Health Data and Information Systems U.S. Territories and Freely Associated States Report

Health Data and Information System U.S. Territories and Freely Associated States

Report

December 2009

Prepared for:

U.S. Department of Interior Office of Insular Affairs 1849 C Street, NW Washington, DC 20240 Prepared by: With assistance from:

Sela V. Panapasa, Ph.D. James A. Weed, Ph.D., University of Michigan Delton Atkinson, MPH, PMP Institute for Social Research Division of Vital Statistics Research Center for Group Dynamics National Center for Health Statistics Program for Research on Black Americans Centers for Disease Control and Prevention

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Acknowledgements

I would like to acknowledge the invaluable contributions of the health professionals and administrators of the U.S. Territories and Freely Associated States for sharing with us their health data collection systems and help us understand the wide array of health-related data currently being collected within their local communities. The process leading to this Health Data and Information System Catalog (HDISC) involved learning the appropriate protocols for engaging with each of the project areas and seek permission to be able to meet with key personnel who are responsible for the collection and processing of health data and information.

First special thanks are extended to the Directors and Health Leaders of the Pacific Island Health Officers Association (PIHOA) and the U.S. Virgin Islands for their leadership, support and guidance throughout this effort. They are Dr. Gregory Dever (Director, Bureau of Hospital and Clinical Services, Palau); Wincener David (Director of Public Health, Pohnpei); Dr. Mark Durand (Director of Health, Yap); Vivian Eberson-Fludd (Commissioner, Department of Health, USVI); Michael Epp (Executive Director, PIHOA); Dr. John Gilmatam (Director of Public Health, Yap); Dr. John Hedson (Director of Clinical Services, Pohnpei); Dr. Riley Jim (Director of Public Health, Pohnpei); Dr. Stevenson Kuartei (Director, Bureau of Public Health, Palau); Justina Langidrik (Secretary of Health, RMI); Aso Utofili Maga (Director, Public Health, American Samoa); Julio Marrar (Director, State Department of Health, Chuuk); Nena Nena (Secretary of Health, FSM); Arthy Nena (Director of Health Services, Kosrae); Marcus Samo (Assistant Secretary for Health, FSM); Dr. Ivan Tuli’au (Medical Director, American Samoa); Dr. John Tuitele (Medical Director, American Samoa); Dr. Abram Ichin (Deputy Director, State Department of Health, Chuuk); Joseph Villagomez (Secretary of Public Health, CNMI); Dr. Victor Yano (Minister of Health, Palau).

Secondly, without the Program Coordinators who have been very instrumental throughout this process and deserve recognition for their professionalism, dedication and hard work we would not have been able to acquire such valuable information to get the job done. We wish to thank each and every one of them for their full cooperation, enthusiasm and time. Also, we want to thank representatives of the U.S. Department of Health and Human Services for their encouragement and support, and colleagues in Hawaii and the University of Michigan’s Institute for Social Research for their advice and assistance. The hospitality expressed by the people in the Pacific and Caribbean made working in the islands very pleasent. We owe everyone our deepest gratitude:

American Samoa: Dr. Jean Asuega, Anna Brown, Fa’atuai Faoa, Tele Hill, Alisi Iongi-Filiaga, Pasesa Lafitaga, Siga Fili Le’iato, Josephine Lamuyuan, Farah Lesa, Sarona Ma’ae, Yoland Masunu, Ofeira Nu’usolia, Moli Pa’au, Moli Samoa, Dottie Siavi’i, Tai Solomona, Mareta Tuiafono, Dr. Tuitele, Jackie Tulafono, Dr. Ivan Tuli’au, Pasa Turituri, Fale Uele, Fara Utu, and Moira Wright.

Commonwealth of the Northern Mariana Islands (CNMI): Annette L. Aguon, Margarita Aldan, Gerard B. Calvo, Dr. Jean Paul Chaine, Vicente Tenorio Chong, John DaxMoreno, Dr. Mary K. Fegurgur, Carolyn R. Garrido, Latisha Lochabay, Maggie Murphy-Bell, Mariana Sablan, Raymond Salas, John Tagabuel, Lynn Tenorio, Margarita Torres Aldan, and John Tagabuel, and Pete Untalan.

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Federated States of Micronesia (FSM): Sheild Angeson, Kathy Asor, Carter Bisau, Holden Dalley, Nancy Lynn Edward, Amato Elymore, Dr. Yalbert Enlet, Martha Esau, Tatari Esah, Casey Freddy, Dr. Marcelle Gallen, James Gilmar, Mercedes Gilmete, Sylvia Guerpin, Reverend Francis Hezel, Helden K. Heldert, Kenye Jackson, Skiller Joe, Caroline Johnny, Dr. Eliasor Johnson, Margaret Lefagoch, Dr. Cindy Lefagopal, Norlin Livae, Marcy Lorrin, Xner Luther, Salome Martin, Patricia Melander, Andita Meyshine, Juliana Mitag, Kiomy Noket, Dr. Herliep Nowell, Theo Onamwar, Denitha Palemar, Moses Patrick, Yumiko Paul, Enrida Pillias, Sigfrit Rain, Boone Rain, Abu Rold, Roslyn Reynold, Arlynn Roby, Moria Shomour, Shiro Sigrah, Siocy Soaz, Sepehr Sohrab, Lucille Stevens, Arlene Takesy, Carston Talley, Martha Thompson, Merinda Timothy, Carsila Tulensa, Kerio Walliby, Sanphy P. William, Sanphy P. William, Cyril Yinnifel, Cindy Ysicar, and Lawrence Yuz.

Guam: Terry Argun, Annette Aguon, Leonel Arcangel, Cecilia Archia, W.J. (Brandy) Brandshagen, Gerard Calvo, Peter John Comacho, Dr. Mary Fegurgur, Tuba Gallon, Carolyn Garrido, Dr. Robert Haddock, Vernancio R. Imanil, Jr., Tony Lorenzo, Patrick Lucas, Charles Morriss, Maggie Murphy-Bell, Vince Quichocho, Peter Roberto, Arthur San Augustin, Raymond Salas, Bernadette Schumann, Gil Suguitan, and Angela Tachney.

Republic of the Marshall Islands (RMI): Risa J. Bukbuk, Ione DeBrum, Oscar DeBrum, Marita Edwin, Kumi Hanerg, Wilbur Heine, Adri Hicking, Daniel Hone, Helen Jenil, Hillia K. Langrine, Esther Lokboj, Armenta Matthew, Gerard Mejbon, Florina Nathan, Janet Nemra, Daisy Pedro, Chinilla Pedro, Henry Peter, Suzanne Philippo, and Dr. Zachraias Zachraias.

Republic of Palau: Martha Dever, Annabel Lyman, Everlynn Belelai, Everett Belelai, Yorah Demei, Tino Fa’atu’uala, Maria Hedenberg, Lucio Hidemi, Kolvas Kloulechad, Margaret Koshiba, Pearl Marumoto, Toshi Misawa, Hilaria Ngemaes, Dr. Kathy Ngemaes-Maddison, Dr. Caleb Otto, Augusta Rengiil, Dr. Louisa Santos, Biribo Tekahene, Husto Ulengehong, Dr. Sylvia Wally, Berry Watson, and Valerie Whipps.

U.S. Virgin Islands: Jackie Adams, Christopher E. Finch, Yvonne George, Kathleen J. Greenway, Annette A. Gumbs, Kund Hansen, Lauris Harley, Cherie Hendricks, Gail A. Jackson, Renee Joseph- Rhymer, Francine E. Lang, Jasper Lettsome, Dr. Denese Marshall, Nona McCray, C. Patricia Penn, Justin Phillip-Dorsett, Michal Rhymer-Charles, Patricia Sprauve, Stevie Webster, and Sharon A. Williams.Michal Rhymer-CharlesMichal Rhymer-

United States: Nia Aitaoto, Lynnette Araki, Clifford Chang, Debbie Coral, Doris Crawford, Nina Diaz, Megan Durham, Karen Kirchner, Brian Krenz, Kristina Krich, Kirsten McCall, Dr. James McNally, Irine Sorser, Phyllis Stillman, Faye Untalan, Roylynn Wada, Capt. John Walmsley, Capt. Cathy Wassam, and Dr. David Williams.

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Table of Contents

Section Page Executive Summary 1. Introduction ...... 1-1 2. Background ...... 2-1 3. Catalog Description ...... 3-1 3.1 Catalog Organization ...... 3-1 3.2 Methodology ...... 3-2 3.3 Using These Data Sources ...... 3-2 4. Data Sources by Domain and Policy Issue ...... 4-1 5. Data Sources by U.S. Territory and Freely Associated State ...... 5-1 6. Listing of Data Sources ...... 6-1 Behavioral Risk Factor Surveillance System (BRFSS) ...... 6-2 Behavioural Surveillance Survey (BSS) ...... 6-4 Breast and Cervical Cancer Early Detection Program (BCCEDP) ...... 6-5 Bureau of Family Health and Nursing Services ...... 6-7 Cancer Registry ...... 6-8 CARE Program ...... 6-9 Child and Adult Immunizations Registry/Survey ...... 6-10 Children with Special Healthcare Needs Assessment Survey (CSHNS) ...... 6-12 Children with Special Needs Registry ...... 6-14 Chronic Disease Program ...... 6-15 Decennial Census of Population ...... 6-16 Demographic and Health Survey (DHS) ...... 6-18 Dental Prevention Program of Elementary School Students ...... 6-19 Diabetes Prevention and Control Program ...... 6-21 Emergency Health Program ...... 6-22 Epidemiology and Factor Analysis of Obesity, Type II Diabetes, Hypertension, and Dyslipidemia (Syndrome X) ...... 6-23 Family Planning ...... 6-24

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Food Safety and Inspection ...... 6-25 Global Youth Tobacco Survey (GYTS) ...... 6-26 Health Behavior and Lifestyle of Pacific Youth (HBLPY) ...... 6-28 Human Resource Study, Health and Education ...... 6-29 Infant Mortality ...... 6-30 Investigation in Lead Poisoning ...... 6-32 Lymphatic Filariasis, Intestinal Parasites and Anaemia Investigations ...... 6-33 Mental Health and Substance Abuse...... 6-35 Monthly Morbidity Report ...... 6-36 Monthly Productivity Report by Health Facility ...... 6-37 Mortality ...... 6-38 Natality ...... 6-39 National Nutrition Survey ...... 6-40 National Survey of Children with Special Healthcare Needs ...... 6-42 Newborn Registry ...... 6-44 Nursing Home Facility ...... 6-45 Oral Health ...... 6-46 Oral Health Survey of Young Children ...... 6-48 Out-patient and In-patient Survey ...... 6-49 Palau Community Health Assessment ...... 6-50 Palau Health Survey ...... 6-51 Pregnant Women’s First Dental Visit ...... 6-52 Pre-natal First Visit Registry ...... 6-53 Sanitation and Environment ...... 6-54 Sexually Transmitted Infection (STI)/HIV/AIDS Prevention, Testing and Screening...... 6-55 STEPS Survey ...... 6-57 Suicide Data ...... 6-58 Traumatic Brain Injury ...... 6-59 Tuberculosis (TB)/Leprosy & Hansen’s Disease ...... 6-60 Vaccination Coverage Survey ...... 6-61 Vitamin A Deficiency Survey ...... 6-62

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Well-Baby Dental Program ...... 6-64 Well Men’s Survey ...... 6-65 Well Women’s Survey ...... 6-66 Women Infant and Child (WIC) Program ...... 6-67 Youth Health Survey ...... 6-68 Youth Risk Behavior Surveillance Survey ...... 6-69 7. Other Data Sources ...... 7-1 Admixture Mapping Schizophrenia Genes in Oceanic Palau ...... 7-1 Age Related Neurodegenerative Disease in Micronesia ...... 7-1 American Samoa Community Cancer Network ...... 7-1 Bone Loss with Age—Epidemiology, Familial and Cross-Cultural Considerations ...... 7-2 Cancer Control Needs among Native American Samoans ...... 7-2 Cognitive and Emotional Profile of Neuropsychiatric Disorders ...... 7-3 Clinical Integration of Genetic Risk Assessment...... 7-3 Core—Clinical ...... 7-3 Core—Neuropathology/Brain Bank...... 7-4 Development of an Intervention for Palauan Youth at Genetic Risk for Psychosis ...... 7-5 Diabetes Care in American Samoa ...... 7-5 Epidemiologic Transition and NIDDM ...... 7-6 Epidemiological and Genetic Studies of ALS/PD Complex of Guam ...... 7-6 Epidemiology of Neurodegenerative Diseases in Micronesia ...... 7-6 Factors in Adolescent Suicide ...... 7-7 Family-Genetic Study of Youth at Risk for Schizophrenia ...... 7-7 Genetic Basis of Syndrome X on the Island of Kosrae ...... 7-8 Genetic Studies in Achromatopsia ...... 7-8 Genetic Study of Schizophrenia in an Ethnic Minority ...... 7-9 Genetics of CVD Risk Factors in Samoans ...... 7-10 Genetics of Physiological Schizophrenia Phenotypes ...... 7-10 Genetics of Psychophysiological Schizophrenia Phenotypes ...... 7-11 Genome Scan for Obesity Susceptibility Loci in Samoans ...... 7-11 HIV/AIDS Prevention Research in St. Croix, U.S.V.I...... 7-12

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Investigations of Osteoarthritis and Bone Loss ...... 7-12 Linkage Study of Schizophrenia and P50 Gating Deficits...... 7-13 Mapping Genes for Schizophrenia in Founder Populations ...... 7-13 Modernization and Diabetes among Samoan Americans ...... 7-14 Molecular Genetic Study of Manic Depression and Schizophrenia ...... 7-14 Molecular Genetics of Schizophrenia ...... 7-15 MRI of Neurodegenerative Disease among Aging Chamorros ...... 7-15 Multiple-Cause Mortality among Aging Samoans ...... 7-16 Natural History of ALS-PD in Guam ...... 7-16 Neuropathologic Studies of Pre Clinical ALS/PDC ...... 7-16 Pacific Islander Cancer Control Network ...... 7-17 PHFtau in Neurodegenerative Disease in Micronesia ...... 7-17 Pilot Study for the Women Physicians’ Health Study ...... 7-18 Pilot—Evaluation of Risk Factors for Chronic Disease among Adults in Guam ...... 7-18 Prevalence/Incidence/Risk Factors for Dementia on Guam ...... 7-19 Studies of Amyotrophic Lateral Sclerosis—Parkinsonic Dementia ...... 7-20 Study of Cancer Incidence in the South Pacific ...... 7-20 Suspected Influences on Methamphetamine Use ...... 7-20 Virgin Islands Export Center for Health Disparities ...... 7-21 WHO Collaborating Center—Epidemiological & Clinical Investigations in Diabetes ...... 7-21 8. Other Reports ...... 8-1 9. Vital Statistics System in the U.S. Territories ...... 9-1 10. Data Gaps and Barriers ...... 10-1 11. Recommendations for DOI ...... 11-1 REFERENCES ...... 12-1 APPENDICES Appendix A: WHO Health Matrix Conceptual Framework ...... A-1 Appendix B: List of Published Articles on Health in the Insular Areas ...... B-1

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Tables and Figures

Figure 2.1: South Pacific Map ...... 2-3 Figure 2.2: U.S.Virgin Island Map ...... 2-4 Figure 2.3: Birth rate (births/1,000) ...... 2-8 Figure 2.4: Infant mortality rate (deaths/1,000 live births) ...... 2-8 Table 2.1: Demographic Characteristics of the U.S. Territories and Freely-Associated States ...... 2-6 Table 4.1: List of data sources by domain and policy issue...... 4-1 Table 5.1: Data sources by domain and insular area ...... 5-1 Table 9.1: Final birth and death totals and estimated populations for Virgin Islands, Guam, American Samoa, Northern Marianas, Hawaii, Puerto Rico, and the U.S., 1994-2005 ...... 9-16 Table 9.2: Number of births, birth rates, fertility rates, total fertility rates, and birth rates for Teenagers 15-19 years, by age of mother: Virgin Islands, Guam, American Samoa, Northern Marianas, and Hawaii, 1994-2005 [By place of residence]...... 9-18 Table 9.3: Number births, birth rates, fertility rates, total fertility rates, and birth rates for teenagers 15-19 years, by age of mother: United States, California, Washington, and Puerto Rico, 1994-2005 [By place of residence] ...... 9-20 Table 9.4: Percentage of birth records on which specified items were not stated: Virgin Islands, Guam, American Samoa, Northern Marianas, Hawaii, total U.S., and Puerto Rico, 2004 [By place of residence ...... 9-22 Table 9.5: Live births by race of mother: Virgin Islands, Guam, American Samoa, Northern Marianas, and Hawaii, 1994-2005 [By place of residence] ...... 9-23 Table 9.6: Live births by race for mother: United States, California, Washington, and Puerto Rico, 1994-2005 [By place of residence] ...... 9-25 Table 9.7: Live births by Hispanic origin of mother and by race for mothers of non-Hispanic origin: Virgin Islands, Guam, Hawaii, and Puerto Rico, 1994-2005 [By place of residence] ...... 9-27 Table 9.8: Number and percentage of births to unmarried women, by race and Hispanic origin of mother: Virgin Islands, Guam, American Samoa, Northern Marianas, and Hawaii, 1994-2005 [By place of residence]...... 9-29

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Executive Summary

The HDISC project was funded by the Department of the Interior, Office of Insular Affairs to address the need for a realistic assessment of the baseline information pertaining to the presence, quality, and potential value of existing data collection efforts that measure the health and well-being of the insular populations. Its objectives were:

• Identify and systematically catalog datasets/data sources on the populations of the U.S. Territories and Compact of Free Association States that describe disease prevalence, health behavior and produce useful health indicators; • Assess the effectiveness of the data collection systems and practices within the insular areas; • Identify critical gaps and suggest ways to strengthen current data collection systems and practices to achieve accurate and timely information; and • Develop recommendations to the DOI, Office of Insular Affairs, how best to improve the health data infrastructure and health information systems in the U.S. Territories

The study itself represented an opportunity to perform an inventory of the number of data collections available through public health agencies. To accomplish this goal, we studied the nature, purpose, and structure of the existing databases. Our work found that: • The available information resources vary considerably, ranging from national surveys and research survey databases to state and community surveys and administrative databases • The foundation of effective data development in the insular areas will be determined by the investments made in equipment and storage mediums that are appropriate to the temperature extremes, the corrosion of the salt air, and the risks of flooding and other natural disasters. Data has value, and, as such, it needs to be stored and maintained in a manner that will allow it to become a natural resource for generations long after it has served its initial purpose. • Improving data collection systems that directly address the health and well-being of the U.S. Insular Areas must be consistent with the recommendations outlined by the Institute of Medicine and National Committee on Vital and Health Statistics which were: o Continued U.S. involvement and investment in the healthcare systems within the insular areas with a specific focus on the immediate and pressing need to develop a regional health information system (IOM, 1998); and o HHS should support and encourage long-term plans for health agencies to integrate data collection and training activities in these same areas (HHS, 1999).

Based on the data gaps and barriers observed as part of the evaluation process as well as from personal interviews with program coordinators and leaders in the selected U.S. Territories and the Freely Associated States, the categorized recommendations were as follows:

Data Collection and Processing

A. DOI should seek support for the implementation and routine administration of a National Health Survey, as well as a Hospital/Community Health Center Discharge Survey in the U.S.

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Territories—American Samoa, Commonwealth of the Mariana Islands, Guam, and the U.S. Virgin Islands.

B. DOI should work with HHS to develop and implement a strategy for agencies to collect comparable and culturally meaningful data on the U.S. Territories and Freely Associated States.

C. DOI should help in the support the implementation and routine administration of the Vital Statistics Systems in the U.S. Territories.

D. DOI is encouraged to negotiate agreements with HHS to assess and provide recommendations that could strengthen the vital statistics systems in the Freely Associated States.

E. DOI should develop a strategy for ensuring that ALL health data collected in the U.S. Territories are adequately supported by an integrated and easily maintained database system.

F. DOI should facilitate through NCHS the development of a 5-year vital statistics technical assistance and training program for the territories.

Data Analysis and Dissemination

G. DOI should negotiate agreements with HHS and other data collection agencies to report results of analyses using data from the insular areas in a form that is understandable across audiences and designed for local use.

H. DOI should work with HHS-NCHS and DOC-Census Bureau to calculate and disseminate intercensal estimates, as well as age, race, and ethnicity-specific life tables for the Territories.

I. DOI should support the development of community college/university health administration and public health tracks in the insular areas which promote data literacy.

J. DOI should support advance training in statistics, research methods, data analysis, and data management between the territories and U.S. agencies, as well as institutions for higher learning.

K. DOI should support a more holistic capacity building program such as WHO’s Health Metrics Network.

L. DOI should support the generation of an ongoing series of annual reports based on key health indicators for the insular areas.

M. DOI should support the production of the Pacific Global Health Publication.

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N. DOI should periodically support national conferences on health and improvement of data collection, analysis, and dissemination on the insular areas.

Data Management and Preservation

O. DOI should provide routine support for the development and maintenance of Health Information Systems in the territories—American Samoa, Guam, Commonwealth of the Northern Mariana Islands, and U.S. Virgin Islands, as well as the Freely Associated States— Federated States of Micronesia, Republic of the Marshall Islands, and Republic of Palau.

P. DOI should negotiate agreements with HHS to develop a data sharing strategy of data collected in the U.S. Territories.

Q. DOI should support the archival and preservation of data on the insular areas.

R. DOI should support the development of broadband connectivity in the insular areas.

S. DOI should support the development of Internal Review Boards (IRB) in the territories and Freely Associates States.

To achieve optimum health and healthcare services for the insular areas, it is essential that robust health information systems are available for effective policy development.

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1. Introduction

Reliable data lies at the foundation of all effective policy development. Data and other structured forms of information represent an irreplaceable tool for measuring and understanding the health and well- being of a nation’s population. Across the globe, governments and institutions have relied on data to engage in evidence-based decision-making, to allow for planning based on information as opposed to assumptions, and to generate realistic forecasts and estimates of future outcomes based on science as opposed to instinct. The collection and analysis of well-planned and well-implemented data collection strategies allow for the development of useful interventions grounded in knowledge and therefore more likely to have a positive impact on the population of interest (National Committee on Vital and Health Statistics, 1999; National Research Council, 2004).

The routine collection of research data, particularly as an internal function of government, health, and educational institutions, serves the purpose of informing future research and data collection efforts. It also promotes a deeper understanding of the processes and population dynamics associated with specific outcomes, for instance, the complex interactions between health and economic productivity. According to the WHO Health Metrics Network (2007), the presence of reliable and timely health information is essential for any public health activity. The active recognition of the need to develop and maintain a system of accurate and informative statistics is essential to a responsive and proactive public health system. This is true no matter what the size of the population or of the level of government responsible for the health of its people.

Recognizing this need, the Department of the Interior (DOI), Office of Insular Affairs (OIA) funded, through the U.S. Department of Health and Human Services, National Center for Health Statistics, Centers for Disease Control and Prevention a project to catalogue data sources pertaining to the health and well-being of the U.S. insular area population in order to better understand existing data gaps and barriers and seek relevant recommendations to address core concerns. This report summarizes the findings for a study of the U.S. flag territories: American Samoa (AS), the Commonwealth of the Northern Marianna Islands (CNMI), Guam, and the U.S. Virgin Islands (VI); and for the three independent countries maintaining Compacts of Free Association with the United States—the Federated States of Micronesia (FSM), the Republic of the Marshall Islands (RMI), and the Republic of Palau (Palau). In addition, because four of the territories (AS, Guam, CNMI, and VI) are currently participating in the U.S. National Vital Statistics System, a special assessment was conducted (see Section 9: Vital Statistics System in the U.S. Territories) using their vital statistics data for health policy and research. Clearly it would be extremely beneficial to expand this section to a review of all the areas addressed in this report, but at present we lack this capacity. Consequently, NCHS has developed this section using available data and information to reflect not only what is occurring in the U.S. Territories but to provide a template that will hopefully evolve to include all insular areas and allow for direct comparisons of these entities.

This Health Data and Information Systems Catalog on the U.S. Territories and Freely Associated States (HDISC) project comes at an important time and follows two important studies conducted by the Institute of Medicine (IOM, 1998) and HHS National Committee on Vital and Health Statistics (HHS, 1999) designed to systematically assess the health systems and health data needs in the Pacific insular

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areas, Puerto Rico, and the Virgin Islands and make recommendations. Currently, routine collection of nationally representative data, such as the National Health Interview Survey, to provide baseline epidemiological information on the health and well-being across the life course of the insular populations is nonexistent. This is unfortunate as local leaders in the insular areas require the same accurate, culturally appropriate, and useful health information available to most states in the United States. Further, detailed and accurate information is essential to the needs of small, insular areas to inform policy, engage in strategic planning, develop meaningful evidence-based interventions, and leverage resources that are becoming increasingly limited and difficult to obtain.

When the federal government’s Office of Management and Budget (OMB) established the new racial category, “Native Hawaiian and Other Pacific Islander (NHOPI)” in 1997, federal agencies were given a direct mandate to collect and present data on these racial populations (Fernandez, 1996; OMB, 1997). This directive was seen as an essential first step in creating new opportunities for the detailed analyses of Pacific Islander populations (Hoyert and Kung, 1997; Srinivasan and Guillermo, 2000; Cho, Hummer and Rogers, 2004; Goggins and Wong, 2007; U.S. Census, 2001; 2005). Of equal importance, however, this mandate had direct implications for the collection of data in the U.S. Territories and Freely Associated States. For example, up until 1992, American Samoans and Guamanians residing in their respective territories were classified as being of Other Asian/Pacific Islander Race in birth and death statistics released by the federal government. Despite internally-generated and university-based data collection efforts performed in the past decades, recent studies have found that the existing data pertaining to health and health care in the insular areas remains problematic.

Inconsistencies in the collection process, questionable data validity, lack of appropriate hardware and software, as well as the lack of trained data personnel continue to impose significant barriers to the development and implementation of meaningful health policy (O’Leary, 1995; IOM, 1998; HHS, 1999; Kuartei, 2005; Taylor, Bampton, Lopez, 2005). Consequently, “decision-makers do not have the information required to identify problems and needs, make evidence based decisions on health policy and allocate resources in an optimal way” (WHO, 2007, pg. 1). Moreover, this lack of timely and accurate information impairs understanding of the unmet health needs facing insular area populations. A number of federally-sponsored conferences have documented the lack of information on the health of the Pacific Islander population. These conferences have identified the negative consequences of this deficit on health policy and planning, and ultimately the welfare of Pacific Islanders (FNHSAAPI, 1995; Office of Minority Health, 1996). Having long since established the critical role this lack of data plays upon the development of realistic health policy, we now need to push forward aggressively to eliminate this problem through the focused collection and preservation of new data and the more systematic use of existing data.

If we succeed in overcoming these data limitations and begin the process of developing an effective health information system, we will enable leaders to make transparent and evidence-based decisions that will ultimately improve the health and well-being of the population in the insular areas.

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2. Background

As part of this catalog, we not only described the content of the identified databases and data tracking systems, we also evaluated their potential strengths and weaknesses as tools to address institutional and individual health issues in the insular areas. In the course of our systematic review, we identified the data limitations and gaps inherent in the existing data resources and developed recommendations for next steps based on the findings and discussions.

The study itself represented an opportunity to perform an inventory of the number of data collections available through public health agencies. To accomplish this goal, we studied the nature, purpose, and structure of the existing databases. Our work found that the available information resources vary considerably, ranging from national surveys and research survey databases to state and community surveys and administrative databases. Our primary selection criterion was that each of the studies identified included health-related information for each area. The detail and the quality of the questionnaire survey design were also examined, but this was considered secondary to the main goal of the project. What is important at this point is to identify what does exist, how it can be used in the short term, and how it can be improved in the future. Many of the studies identified showed tremendous potential for application and health research and for policy development. Others had systematic problems that may have undermined the validity of some of the measures collected. Most studies lay somewhere between these two extremes. Ultimately, no data set is without some value, either as a starting point for understanding some aspect of health within the population or as a foundation to be built on and expanded upon in future years.

The work of the project leader documents some of the unique challenges facing researchers attempting to collect data within the insular areas. The climate, the existing infrastructure and the challenges of moving about within many of the areas of interest can represent barriers to the uninitiated. The portable computer used by the project leader herself had to be replaced due simply to the day-to-day use of the machine within the area. The tropics are hard on electronic machinery, and this fact alone needs to be seriously considered in the development of any data collection plans. Further, it has direct implications for the archiving and preservation of existing and future data collections. Lack of careful

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consideration of the challenges inherent in working in the insular areas, the risk of data loss, the corruption of electronic medium, and the rapid changes of software platforms can undermine the best- intended and well-funded efforts. The foundation of effective data development in the insular areas will be determined by the investments made in equipment and storage mediums that are appropriate to the temperature extremes, the corrosion of the salt air, and the risks of flooding and other natural disasters. Data has value, and, as such, it needs to be stored and maintained in a manner that will allow it to become a natural resource for generations long after it has served its initial purpose. We will discuss preservation and archiving of data in a later segment of this report.

The goal to improve data collection in a manner that directly addresses the health and well-being of the U.S. Insular Areas is also consistent with those outlined by the Institute of Medicine and National Committee on Vital and Health Statisics which recommended: 1) continued U.S. involvement and investment in the healthcare systems within the insular areas with a specific focus on the immediate and pressing need to develop a regional health information system (IOM, 1998); and 2) HHS support and encourage long-term plans for health agencies to integrate data collection and training activities in these same areas (HHS, 1999). These organizations join others such as DOI and local public health departments within the Insular Areas in tracking outcomes toward Healthy People 2010 goals (DHHS 2000; Institute of Medicine, 1998; HHS, 1999)). The domains employed in the catalog are derived from U.N. Health Data Matrix framework, which provides comprehensive rational for core data sources within a country health information system (WHO, 2007). Altogether there are six core data sources: 1) Census of population and housing—that collects information on the size of a population, geographic distribution of the population, and the social, economic and demographic characteristics of its people; 2) Civil registration—based on vital event monitoring; 3) Population based surveys and surveillance—typically household surveys to generate detail information on the specific health issue within the population; 4) Health and disease records—based on health records or disease registries of patient and health provider encounters; 5) Health service records—captures the number of clients receiving a given health service; and 6) Health administrative records—accounts for the quality and availability of key health services.

The populations covered by this catalog are the U.S. Associated Pacific Islands, namely American Samoa, Guam, the Commonwealth of the Northern Mariana Islands, the Federated States of Micronesia, the Republic of the Marshall Islands and the Republic of Palau, as well as the U.S. Virgin Islands. Figure 2.1 and Figure 2.2, represent a map of the areas.

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Figure 2.1: Map of the South Pacific

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Figure 2.2: U.S. Virgin Islands Map Source:

https://www.cia.gov/library/publications/the-world-factbook/geos/vq.html

U.S. Territories and Freely Associated States

This section provides detailed information on insular areas presented in this report, including location, geography, history, demographics, and general hospital/health center services.

There are seven U.S. associated island jurisdictions; six are located in the Pacific Basin and one in the Caribbean. American Samoa, the Commonwealth of the Northern Mariana Islands (CNMI), Guam, and the U.S. Virgin Islands are considered U.S. Territories, while the remaining three, the Federated States of Micronesia (FSM), the Republic of the Marshall Islands (RMI), and the Republic of Palau (Palau), are independent countries with free association with the United States through Compact agreements (DOI, 1997; 1999). American Samoans are considered U.S. nationals, whereas Guamanians

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and people of the CNMI are considered U.S. citizens. As these areas are classified as unincorporated territories, not all provisions of the U.S. constitution apply to American Samoa, the CNMI or Guam regardless of citizenship status. Specifically, American Samoans, Guamanians, and Northern Mariana Islanders are not eligible to vote in U.S. presidential elections or benefit from many federal programs that target the poor (Berringer et al, 1993). American Samoa and Guam send a non-voting Delegate to the U.S. House of Representatives, and the CNMI sends a Washington Resident Representative to represent the interests of the territory; no territory has representation in the U.S. Senate (Berringer et al., 1993; U.S. Department of Interior, 1999). Because American Samoa, the CNMI, and Guam remain under the “sovereignty” of the United States, these territories are not eligible to participate in the services provided by international organizations and financial institutions such as the WHO, the Asian Development Bank, and United Nations programs, compared to their Freely Associated States counterparts. Citizens of the U.S. Territories and Freely Associated States (FSM, RMI, and Palau) can enter and work in the United States without restriction.

Demographic Variation across the Insular Territories

Table 2.1 summarizes a number of standard demographic variables that allow direct comparative measures across the insular areas. Much of this information is drawn from the CIA World Factbook, one of the few authoritative sources of socioeconomic and demographic information for small areas such as the Territories and the Freely Associated States. In a later section of the report we will address health and vital statistics in more detail for the Insular Territories as they fall within the US vital registration system. There is currently no such analogous program in place for the Freely Associated States, so variations will exist in the estimates made out to 2008 by the World Fact Book and the more accurate information gathered by the CDC on the Insular Territories up until 2006 but the CDC information does not provide insight into comparative figures for the Freely Associated States. Initially we seek to provide a broad overview of comparative statistics for the most recent estimates of health measures and vital statistics available to any interested researcher, and as the report progresses we will introduce information obtained as part of the data gathering and cataloguing process. This will hopefully allow us to identify potential strengths and weaknesses in commonly used estimates for the U.S. Territories and the Freely Associated States. Table 1 focuses upon demographic measures and the appendix section provides a detailed and thorough assessment of all comparable measures available for each of the geographic areas of interest to DOI. According to Table 2.1, the variation in the estimated populations for the insular areas is quite marked from a low of 21,000 for Palau to a high of 176,000 for Guam. Age structure also varies, with the Marshall Islands reporting the highest proportion of children under the age of 15 and Northern Mariana reporting the lowest. Guam and the Virgin Islands are by far the oldest populations in the insular areas, but this may be due, at least in part, to retirement migration to these territories resulting from their close ties to the United States and its socioeconomic structures. Population growth rates are relatively flat, and both the Virgin Islands and Micronesia report negative or zero growth. This is clearly surprising for the Federated States of Micronesia, as it is estimated to have a relatively high birth rate of 24 live births per thousand persons as 2008 (Figure 1).

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Table 2.1: Demographic Characteristics of the U.S. Territories and Freely-Associated States

FREELY ASSOCIATED STATES U.S. TERRITORIES Commonwealth Republic of the U.S. Federated of the American Northern Virgin States of Marshall Republic Population Characteristics Samoa Mariana Islands Guam Islands Micronesia Islands of Palau

Population: (July 2008 est.) 64,827 86,616 175,877 109,840 107,665 63,174 21,093 Age Structure 0-14 years: 34.4% 18.4% 28.2% 21% 35.3% 38.5% 25.8 Male 11,337 8,342 25,644 11,698 19,344/ 12,404 2,797 Female 10,946 7,594 23,910 11,390 18,687 11,946 2,637 15-64 years: 61.8% 79.9% 64.8% 66.2% 61.8% 58.6 69.4% Male 20,335 27,996 58,034 34,035 33,142 18,937 7,864 Female 19,728 41,245 55,900 38,670 33,389 18,095 6,779 65 years and over: 3.8% 1.7% 7% : 12.8% 2.9% 2.8% 4.8 Male 1,161 740 5,801 6,312 1,320/ 869 482 Female 1,320 699 6,588 7,735 1,783 923 534 Median age: Total: 22.8 29.9 28.9 38.5 21.6 21 32.3 Male: 22.7 32 28.7 38 21.1 21 33.3 Female: 23 28.9 29.2 39 22.1 20.9 31.3 Population growth rate: 1.236% 2.377% 1.37 0.002 -0.191 2.142 1.157% 23.66 19.04 18.37 12.29 23.66 31.52 17.4 Birth rate: for every thousand people in the population for a live births as of 2008/1,000 est.) Death rate: deaths/1,000 4.13 2.31 4.65 6.55 4.53 4.57 6.73 Net migration rate: migrant(s)/1,000 -7.17 7.04 N/A -5.72 -21.04 -5.52 0.9 Sex ratio: male(s)/female At birth: 1.06 1.06 1.06 1.06 N/A 1.05 1.06 Under 15 years: 1.04 1.10 1.07 1.03 1.04 1.06 15-64 years: 1.03 0.68 1.04 0.88 1.05 1.16 65 years and over: 0.88 1.06 0.88 0.82 0.94 0.9 Total population: 0.995 0.8975 1.007 0.9075 1.0175 1.06 Infant mortality rate: (deaths/1,000 live births) Total: 10.46 6.72 6.55 7.72 27.03 26.36 13.69 Male: 13.69 6.668 7.22 8.43 29.8 29.58 15.37 Female: 7.03 6.76 5.84 6.96 24.13 22.98 11.9 Life expectancy at birth: Total population: 73.47 76.5 78.93 78.92 70.65 70.9 71.0 Male: 70.55 73.89 75.86 75.9 68.79 68.88 67.82 Female: 76.56 79.26 82.19 82.11 72.61 73.03 74.36

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Republic Commonwealth U.S. Federated of the American of the Northern Virgin States of Marshall Republic Population Characteristics Samoa Mariana Islands Guam Islands Micronesia Islands of Palau

Total fertility rate: Children 3.35 1.18 2.55 1.88 2.98 3.68 2.45 born/woman HIV/AIDS – Adult prevalence rate: No reliable information* People living with HIV HIV/AIDS - deaths: Source: CIA World Fact Book 2008: https://www.cia.gov/library/publications/the-world-factbook/ Note: *HIV/AIDS data is systematically collected in the U.S. Territories and Freely Associated States. According to local health leaders reliable HIV/AIDS information currently exists.

It appears that migration plays a strong role in the flat or negative growth rates for the insular areas with migration flow out of the areas exceeding the size of return migration, except for the Commonwealth of the Northern Mariana Islands. This is particularly true for the Federated States of Micronesia, which shows negative migration rates better than three times higher than seen for the other insular areas.

Levels of mortality and life expectancy are seen as useful indicators for the health of the population. Death rates vary from 2 per thousand for the Northern Marianas to 7 per thousand for Palau. According to Table 2.1 and Figure 2, the Freely Associated States experience significantly higher mortality rates than those seen for U.S. Territories. In American Samoa, the estimated rate is 10 infant deaths per thousand live births as of 2008, compared to the Republic of the Marshall Islands and the Federation of Micronesia, each with slightly over 26 and 27 infant deaths per thousand live births respectively. Equally distressing is the markedly lower life expectancy seen for the Freely Associated States compared to the U.S. Territories. Life expectancy for women ranges up to 10 years less in the Freely Associated States than the life expectancy seen for women in Guam and the U.S. Virgin Islands. The total fertility rate in general remains above replacement with the exception of the Marshall Islands, which is nearing a TFR of one, which is quite low for a developing nation. According to the CIA Factbook, there seems to be little reliable information on STDs and HIV/AIDS for the insular areas, however, systematic collection of STD and HIV/AIDs data in the insular areas exists and represent a valuable source of information on the prevalence patterns of the disease. This makes the development of intervention policies in the face of high risks of disease transmission, infertility, early mortality, and any one of a number of co-morbidities worthwhile examining.

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Figure 1: Birth rate: births/1,000 35

15 Birth rate: births/1,000

0 American Commonwealth Guam US Virgin Federated Republic of the Republic of Samoa of Northern Islands States of Marshall Palau Mariana Islands Micronesia Islands

Source: CIA World Fact Book 2008: https://www.cia.gov/library/publications/the-world-factbook/

Figure 2: Infant mortality rate: (deaths/1,000 live births) 30

Total: 10

0 American Samoa Commonwealth Guam US Virgin Islands Federated States Republic of the Republic of Palau of Northern of Micronesia Ma rsha ll Isla nds Mariana Islands

Source: CIA World Fact Book 2008: https://www.cia.gov/library/publications/the-world-factbook/

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In summary, this brief review of basic demographic indicators reflects the inherent heterogeneity that marks Pacific culture and requires that each insular area be treated as an independent entity, with unique ways of approaching its individual population issues. This report seeks to illustrate commonalities across these areas in terms of the collection of information, but it also seeks to emphasize the challenges of trying to develop and implement a one-size-fits-all policy for this region.

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3. Catalog Description

As described above, this catalog was designed to provide overview information on a variety of data sources that can address the health and well-being issues of populations in the U.S. Territories and the Compact of Freely Associated States. It was not meant to be an exhaustive listing of all data available. Time and resource limitation prevented coverage of the entire universe of data sources that might be used to address these topics. Discussed parameters for the data cataloged were:

Data should be health related; Data should be from a survey, program reporting system, or registry; Data should be quantitative in nature; Contact and location information regarding the data source must be available; Data should have been collected primarily to fill advocacy needs, support funding interests; Coverage of data source must be either national or focus on a subpopulation, or consist of a smaller geographic area of clear relevance to the U.S. jurisdictions; and Timeframe of the data source should be early-1990s or later (unless a strong argument can be made to include older data).

NOTE: This review did not include an assessment of the quality of the data or any form of analysis of any data sources identified in this report except for the vital statistics data for the U.S. Territories only that is archived and distributed through the National Center for Health Statistics.

3.1 Catalog Organization

Section 1 Introduction Section 2 Background Section 3 Catalog Description Section 4 Data Sources by Topical Areas (Domain and Policy Issue) Section 5 Data Sources by U.S. Territories and Freely Associated States Section 6 Description of Data Sources Section 7 Other Data Sources Section 8 Other Reports Section 9 Vital Statistics System in the U.S. Territories Section 10 Data Gaps and Barriers Section 11 Recommendations for DOI REFERENCES APPENDICES Tables and Figures

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3.2 Methodology

Developing the initial listings of data sources

The datasets and databases that form the basis of the HDISC were identified by reviewing all available resources that could be placed within the scope of the study. Detailed information that clarified specific needs and strengths were obtained directly through site visits made to the insular areas. These site visits allowed the investigators to perform in-depth meetings with program coordinators in Public Health Departments, as well as, speak to governmental representatives, local college or university faculty and, physicians and nurses and other health care professionals. To identify and catalogue research projects in the insular areas that were funded by U.S. federal agencies or international agencies, the investigators searched the electronic databases and published funding reports of select health organizations including the Centers for Disease Control (CDC), the National Center for Health Statistics (NCHS), Health Resources and Services Administration (HRSA), Substance Abuse and Mental Health Service Administration (SAMSHA), U.S. Department of Agriculture (USDA), World Health Organization (WHO), and the Secretariat of the Pacific Community (SPC). Most of the federally-sponsored research for the years spanning 1990 to 2005, including the support of population/survey data collection, was obtained through the U.S. grant-search databases, Computer Retrieval of Information on Specific Projects (CRISP), and Computer Retrieval Information System (CRIS). Information and data resources were also obtained from the Inter-university Consortium for Political and Social Research (ICPSR) at the University of Michigan and through publication databases such as PubMed, JStor and ProQuest.

Screening of data sources

The data sources were screened using the following criteria: Be directly related to the health and healthcare of the populations in the insular areas. Represent either a population-based or health-service based data source Data is collected and reported by an official health employee based on the islands Data is publicly available on major citation databases The data were collected during the past two decades

3.3 Using These Data Sources

The catalog and report are intended for a variety of users including the jurisdiction stakeholders; researchers from the government, private sector, academic institutions, and foundations; and policy makers. The catalog provides an overview of existing resources identified as part of the project inventory. The profiles are not instructions on how to use the data resources for policy development or analysis, which is highly dependent on capacity, existing infrastructure, and the capabilities of the people charged to examine these resources for the benefit of a specific insular area. Rather, the profiles provide contact information and data source locations for those interested in conducting further in-depth reviews of targeted data sources. The author does not offer direct access to the information described in this report. These data remain the property and resource of the area of interest or funding agency, and while many public health workers and government researchers within the insular areas will welcome opportunities for

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collaborative research, it is important that this research benefits the insular area in some direct and substantial manner.

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4. Data Sources by Domain and Policy Issue

• Demographic, social, and economic indicators (1 data set) • Disease/Injury specific issues (12 data sets) • Elder well-being (1 data set) • Family well-being (2 data sets) • Health policy issues (11 data sets) • Infant and child well-being (9 data sets) • Maternal and women’s well-being (4 data sets) • Paternal and men’s well-being (1 data set) • Youth and adolescent well-being (6 data sets) • Healthcare services (5 data sets) • Health administration (2 data sets)

Table 4.1: List of Data Sources by Domain and Policy Issue Dataset Policy Issue Page #

1. Population Based Decennial Census of Population Demographic, Social, Economic 6-16 and Disability Indicators

2. Civil Registration Infant Mortality Health policy 6-30 Mortality Health policy 6-38 Natality Health policy 6-39 Newborn Registry Infant and child well-being 6-44 Pre-natal First Visit Registry Infant and child well-being 6-53

3. Population-based Survey Behavioral Risk Factor Surveillance System Health policy 6-2 (BRFSS) Behavioral Surveillance Survey (BSS) Youth and adolescent well-being 6-4 Children with Special Health Care Needs Youth and adolescent well-being 6-12 Assessment Survey (CSHNS) Demographic and Health Survey (DHS) Health policy 6-18 Epidemiology and Factor Analysis of Obesity, Health policy 6-23 Type II Diabetes, Hypertension, and Dyslipidemia (Syndrome X) Global Youth Tobacco Survey (GYTS) Youth and adolescent well-being 6-26 National Nutrition Survey Family well-being 6-40 National Survey of Children with Special Infant and child well-being 6-42 Healthcare Needs Oral Health Survey of Young Children Infant and child well-being 6-48

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Dataset Policy Issue Page # Out-Patient and In-Patient Survey Healthcare services 6-49 Palau Community Health Assessment Health policy 6-50 Palau Health Survey Health policy 6-51 STEPS Survey Health policy 6-57 Vaccination Coverage Survey Infant and child well-being 6-61 Vitamin A Deficiency Survey Infant and child well-being 6-62 Well Men’s Survey Paternal and men’s well-being 6-65 Well Women’s Survey Maternal and women’s well-being 6-66 Youth Health Survey Youth and adolescent well-being 6-68 Youth Risk Behavior Surveillance Survey Youth and adolescent well-being 6-69

4. Health and Disease Records Breast and Cervical Cancer Early Detection Maternal and women’s well-being 6-5 Program (BCCEDP) Cancer Registry Disease/Injury specific issues 6-8 CARE Program Disease/Injury specific issues 6-9 Child and Adult Immunizations Family well-being 6-10 Registry/Survey Children with Special Needs Registry Infant and child well-being 6-14 Chronic Disease Program Disease/Injury specific issues 6-15 Dental Prevention Program of Elementary Infant and child well-being 6-19 School Students Diabetes Prevention and Control Program Disease/Injury specific issues 6-21 Family Planning Maternal and women’s well-being 6-24 Health Behavior and Lifestyle of Pacific Youth Youth and adolescent well-being 6-28 (HBLPY) Lymphatic Filariasis, Intestinal Parasites and Disease/Injury specific issues 6-33 Anemia Investigations Mental Health and Substance Abuse Disease/Injury specific issues 6-35 Monthly Morbidity Report Disease/Injury specific issues 6-36 Oral Health Disease/Injury specific issues 6-46 Pregnant Women’s First Dental Visit Maternal and women’s well-being 6-52 Sexually Transmitted Infection Disease/Injury specific issues 6-55 (STI)/HIV/AIDS Prevention, Testing, and Screening Suicide Data Disease/Injury specific issues 6-58 Traumatic Brain Injury Disease/Injury specific issues 6-59 Tuberculosis (TB)/Leprosy and Hansen’s Disease/Injury specific issues 6-60 Disease Well-Baby Dental Program Infant and child well-being 6-64

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Dataset Policy Issue Page #

5. Health Service Records Emergency Health Healthcare services 6-22 Food Safety and Inspection Healthcare services 6-25 Investigation in Lead Poisoning Health policy 6-32 Nursing Home Facility Elder well-being 6-45 Women Infant and Child (WIC) Program Healthcare services 6-67

6. Health Administrative Records Bureau of Family Health and Nursing Services Health administration 6-7 Human Resource Study, Health and Education Health administration 6-29 Monthly Productivity Report by Health Facility Healthcare services 6-37 Sanitation and Environment Health policy 6-54

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5. Data Sources by U.S. Territory and Freely Associated State

Table 5.1: Data Sources by Domain and Insular Area

U.S. TERRITORIES FREELY ASSOCIATED STATES

Republic Commonwealth of U.S. Federated of the American the Northern Virgin States of Marshall Republic No Dataset Samoa Mariana Islands Guam Islands Micronesia Islands of Palau

Population Based 1 Decennial Census of Y Y Y Y Y Y Y Population

Civil Registration 2 Infant Mortality Y Y Y Y Y Y Y 3 Mortality Y Y Y Y Y Y Y 4 Natality Y Y Y Y Y Y Y 5 Newborn Registry Y Y Y Y Y Y Y 6 Pre-natal First Visit Y Y Y Y Y Y Y Registry

Population-based Survey 7 Behavioral Risk Factor Y Y Y Y — — — Surveillance System (BRFSS) 8 Behavioral Surveillance — Y — — — — — Survey (BSS) 9 Children with Special Health Care Needs Y Y Y Y Y Y Y Assessment Survey (CSHNS) 10 Demographic and Health — — — — — Y — Survey (DHS) 11 Epidemiology and Factor — — — — Y — — Analysis of Obesity, Type II Diabetes, Hypertension, and Dyslipidemia (Syndrome X) 12 Global Youth Tobacco Y Y Y Y Y Y Y Survey (GYTS) 13 National Nutrition Survey — — — — Y — —

14 National Survey of Y Y Y Y Y Y Y Children with Special Healthcare Needs 15 Oral Health Survey of — Y Y — Y Y Y Young Children 16 Out-patient and In-patient — — — — Y — — Survey 17 Palau Community Health — — — — — — Y Assessment

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Republic Commonwealth of U.S. Federated of the American the Northern Virgin States of Marshall Republic No Dataset Samoa Mariana Islands Guam Islands Micronesia Islands of Palau 18 Palau Health Survey — — — — — — Y 19 STEPS Survey Y Y — — Y Y Y 20 Vaccination Coverage Y Y Y Y Y Y Y Survey 21 Vitamin A Deficiency — — — — Y Y Y Survey 22 Well Men’s Survey — Y — — — — —

23 Well Women’s Survey — Y — — — — — 24 Youth Health Survey — — — — Y — —

25 Youth Risk Behavior Y Y Y Y Y Y Y Surveillance Survey

Health and Disease Records 26 Breast and Cervical Y Y Y Y — — Y Cancer Early Detection Program (BCCEDP) 27 Cancer Registry Y Y Y Y Y Y Y 28 CARE Program Y Y Y Y Y Y Y

29 Child and Adult Y Y Y Y Y Y Y Immunizations Registry/Survey 30 Children with Special Y Y Y Y Y Y Y Needs Registry 31 Chronic Disease Program Y Y Y Y Y Y Y 32 Dental Prevention Y Y Y Y Y Y Y Program of Elementary School Students 33 Diabetes Prevention and Y Y Y Y Y Y Y Control Program 34 Family Planning Y Y Y Y Y Y Y 35 Health Behavior and — — — — Y — — Lifestyle of Pacific Youth (HBLPY) 36 Lymphatic Filariasis, Y — — — Y Y — Intestinal Parasites, and Anemia Investigations 37 Mental Health and Y Y Y Y Y Y Y Substance Abuse 38 Monthly Morbidity Report Y Y Y Y — — — 39 Oral Health Y Y Y Y Y Y Y 40 Pregnant Women’s First Y Y Y Y Y Y Dental Visit 41 Sexually Transmitted Y Y Y Y Y Y Y Infection (STI)/HIV/AIDS Prevention, Testing, and Screening

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Republic Commonwealth of U.S. Federated of the American the Northern Virgin States of Marshall Republic No Dataset Samoa Mariana Islands Guam Islands Micronesia Islands of Palau 42 Suicide Data Y Y Y Y Y Y Y 43 Traumatic Brain Injury Y Y Y Y Y Y Y 44 Tuberculosis (TB)/Leprosy Y Y Y Y Y Y Y & Hansen’s Disease 45 Well-Baby Dental Y Y Y Y Y Y Y Program

Health Service Records 46 Emergency Health Y Y Y Y Y Y Y 47 Food Safety and Y Y Y Y Y Y Y Inspection 48 Investigation in Lead — — — — Y — — Poisoning 49 Nursing Home Facility — — — Y — — — 50 Women Infant and Child Y Y Y Y — — — (WIC) Program

Health Administrative Records 51 Bureau of Family Health Y Y Y Y Y Y Y and Nursing Services 52 Human Resource Study, — Y Y Y Y — Y Health and Education 53 Monthly Productivity Y Y Y Y Y Y Y Report by Health Facility 54 Sanitation and Y Y Y Y Y Y Y Environment

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6. Listing of Data Sources

The following pages contain detailed descriptions of the 54 data sources included in this catalog.

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Behavioral Risk Factor Surveillance System (BRFSS)

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention (CDC)—National Center for Chronic Disease Prevention and Health Promotion

Description: The objective of the Behavioral Risk Factor Surveillance System (BRFSS) is to collect uniform information on health risk behaviors, preventive health practices, and health care access primarily related to chronic diseases, injuries, and preventable infectious diseases in the adult population. The health survey helps to identify emerging health problems, establish and track health objectives, and develop and evaluate public health policies and programs. Collected demographic data (gender, age, educational attainment, race/ethnicity, household income, employment status, and marital status.

Relevant Health policy issues Policy Issues:

Unit of Adult population (18 years and older) Analysis:

Geographic Since 2001, the BRFSS was administered in 50 States, the District of Columbia, Scope: Puerto Rico, American Samoa, Guam, U.S. Virgin Islands and more recently in the Commonwealth of the Northern Mariana Islands.

Date or Data collected has been conducted annually since 1984; however, data Frequency: collection in the US Territories began in 2001.

Data Data operations are managed by the local health departments and follows Collection guidelines provided by CDC. The survey used a simple random sample design Methodology: and was a telephone survey.

For Guidelines for HIV/AIDS, STI, and Behavioral Risk Factors Surveillance: Additional Pacific Island Countries and Areas, World Health Organization Regional Office Information: for the Western Pacific, 2000, 24 pp. (Also available at http://www.wpro.who.int/NR/rdonlyres/4EEC1089-216F-4D6D-9C1C- 54910DB6A14D/0/Guidelines_for_HIV_AIDS_STI_Behavioural_Risk_Factors _Surveillance_PIC_2000.pdf

2005 National Healthcare Disparities Report. U.S. Department of Health and Human Services: Agency for Healthcare Research and Quality, Rockville, MD. AHRQ Publication No. 06-0017 www.ahrq.gov/qual/nhdr05/nhdr05.pdf

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Data can be accessed at http://www.cdc.gov/brfss

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Behavioral Surveillance Survey (BSS)

Sponsor: World Health Organization (WHO) and United Nations Children’s Fund (UNICEF)

Description: National surveillance survey to determine awareness, attitudes and perceptions on sexual behaviors pertaining to sexually transmitted infections (STIs), human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS). Collected demographic characteristics (age, DOB, ethnicity, residence, household structure, education, occupation), sexual history, anal sex, sexually active youth, sexually transmitted infections, alcohol and drug use and tattooing, HIV/AIDS knowledge, attitudes and access to testing, stigma and discrimination.

Relevant Youth and adolescent well-being Policy Issues:

Unit of Youth ages 18-24 years, and older adults 24-49 years Analysis:

Geographic Non-institutionalized population in the Commonwealth of the Northern Mariana Scope: Islands

Date or CNMI—2006 Frequency:

Data Cross-sectional Face-to-face interview Collection Methodology:

For HIV/AIDS & STI Section, PHP, Secretariat of the Pacific Community, The Additional Pacific Regional Strategy on HIV/AIDS 2004-2008 (Final Working Draft), Information: (Final Working Draft), SPC - Secretariat of the Pacific Community, 5th July 2004, 32 pp. http://www.hivpolicy.org/Library/HPP000028.pdf

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Breast and Cervical Cancer Early Detection Program (BCCEDP)

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention—Division of Cancer Prevention and Control

Description: Cooperative agreements are established with State, Tribe or Territory Comprehensive Breast and Cervical Cancer Early Detection Programs through increased screening and follow-up among groups of women who are of low income, uninsured, underinsured and minority. Data collected is associated with the provision of mammogram clinical breast exam and Pap tests, and screening. Outreach programs are conducted to disseminate information and educate women.

Relevant Policy Maternal and women’s well-being Issues:

Unit of Women age 40 and older Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Guam, Scope: Republic of Palau, U.S. Virgin Islands.

Date or 2002 to 2009 Frequency:

Data Collection Screenings, mammographies and Pap tests were administered as follows: Methodology: AS—Over 2,000 women; CNMI—N/A Programs providing fewer than 200 mammograms or fewer than 200 Pap tests within the reporting period are suppressed; Guam—4648 women; Republic of Palau—Over 3,000 women; U.S. Virgin Islands—N/A

For Additional National Breast and Cervical Cancer Early Detection Program Information: http://www.cdc.gov/cancer/nbccedp/pdf/0809_nbccedp_fs.pdf

Cancer Control in the U.S. Affiliated Pacific Islands http://www.cdc.gov/cancer/ncccp/usapi.htm

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CDC—Centers for Disease Control and Prevention. National Breast and Cervical Cancer Early Detection Program: American Samoa http://www.cdc.gov/cancer/nbccedp/data/summaries/american_samoa.htm#o verview

CDC—Centers for Disease Control and Prevention. National Breast and Cervical Cancer Early Detection Program: Guam http://www.cdc.gov/cancer/nbccedp/data/summaries/guam.htm

CDC—Centers for Disease Control and Prevention. National Breast and Cervical Cancer Early Detection Program: Republic of Palau http://www.cdc.gov/cancer/nbccedp/data/summaries/republic_of_palau.htm

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Bureau of Family Health and Nursing Services

Sponsor: U.S. Department of Health and Human Services (DHHS)/Health Resources and Services Administration— Maternal and Child Health Bureau Programs

Description: States and jurisdictions use Title V funds to design and implement a wide range of maternal and child health programs that meet national and State needs. Although specific initiatives may vary among the 59 States and jurisdictions utilizing Title V funds, all programs work to do the following: Reduce infant mortality and incidence of handicapping conditions among children; Increase the number of children appropriately immunized against disease; Increase the number of children in low-income households who receive assessments and follow-up diagnostic and treatment services; Provide and ensure access to comprehensive perinatal care for women; preventative and child care services; comprehensive care, including long-term care services, for children with special health care needs; and rehabilitation services for blind and disabled children under 16 years of age who are eligible for Supplemental Security Income; facilitate the development of comprehensive, family-centered, community-based, culturally competent, coordinated systems of care for children with special health care needs.

Relevant Policy Health administration Issues:

Unit of Individual, infants, disabled children under 16 years, family, low-income Analysis: women, pregnant women.

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Guam, Scope: Federated States of Micronesia, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or Daily clinic visits Frequency:

Data Collection Medical encounter record Methodology:

For Additional Maternal and Child Health Bureau Programs Information: http://mchb.hrsa.gov/programs/

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Cancer Registry

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control—National Comprehensive Cancer Control Program, National Cancer Institute to Reduce Cancer Health Disparities, Health Resource and Services Administration—Pacific Association for Clinical Training

Description: Cancer registries are being develop through a collaborative process to monitor cancer trends overtime; determine cancer patterns in various populations; guide planning and evaluation of cancer control programs; help set priorities for allocating health resources; advance clinical, epidemiologic, and health services research; provide information for a national database of cancer incidence.

Relevant Disease/Injury specific issues Policy Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or Since 2002 Frequency:

Data Medical encounter record Collection Methodology:

For Pacific Regional Comprehensive Cancer Control Plan 2007-2012 Additional http://cancercontrolplanet.cancer.gov/state_plans/Pacific_Regional_Cancer_Co Information: ntrol_Plan.pdf

National Comprehensive Cancer Control Program (NCCP) http://www.cdc.gov/cancer/ncccp/

National Program of Cancer Registries http://www.cdc.gov/cancer/npcr/

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CARE Program

Sponsor: U.S. Department of Health and Human Services (DHHS)/Substance Abuse and Mental Health Services Administration (SAMHSA)

Description: To improve the physical health status of people with serious mental illnesses (SMI) by supporting communities to coordinate and integrate primary care services into publicly funded community mental health and other community-based behavioral health settings. The CARE Program administers the Communities That Care Youth Survey, is a reliable and valid instrument to measure the incidence and prevalence of substance use, delinquency and related problem behaviors and the risk and protective factors that predict those problems in your community. Risk factors, and consequences of depression, suicide behavior and drug cases to recovery program.

Relevant Policy Disease/Injury specific issues Issues:

Unit of Individual, high risk youth Analysis:

Geographic American Samoa, Guam, Federated States of Micronesia, Republic of the Scope: Marshall Islands, and Republic of Palau

Date or Daily Frequency:

Data Collection Medical encounter record Methodology:

For additional SAMSHA Health Information Network. Communities that Care information: http://ncadi.samhsa.gov/features/ctc/resources.aspx

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Child and Adult Immunizations Registry/Survey

Sponsor: U.S. Department of Health and Human Services (DHHS)/Center for Disease Control and Prevention—National Immunization Program

Description: The Immunization Program is to prevent the spread of communicable diseases through monitoring and evaluation of immunization coverage particularly among children 0-6 years old, the age group most at risk. The program offers a variety of services: immunizations of all age groups including international travel vaccinations, school immunization coverage assessment, public immunization outreaches. The National Immunization Survey collects information on vaccine coverage, along with information on race and ethnicity and socioeconomic status.

Relevant Policy Infant and child well-being Issues:

Unit of Infants, children and adults Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or 1997-1998 Frequency:

Data Collection Annual school vaccination surveys and biennial surveys of Head Start Methodology: programs and licensed day care facilities, as well as medical records.

For Additional National Foundation for Infectious Diseases. (2008). Immunization: Information: Supporting a Healthier Life Throughout the Lifespan: National Adult Immunization Awareness Week 2008. Bethesda, MD http://www.nfid.org/pdf/publications/naiaw08.pdf

R Jiles, C Fuchs, RM Klevens. (2000). Vaccination Coverage Among Children Enrolled in Head Start Programs or Day Care Facilities or Entering School. CDC—MMWR; 49(SS09):27-38 http://www.cdc.gov/mmwr/preview/mmwrhtml/ss4909a2.htm

PART VII — Health and Safety Requirements in the Territories (AS, CNMI,

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GU, PR, VI) http://www.nccic.acf.hhs.gov/pubs/stateplan/part7.pdf

Immunization Program in Virgin Islands http://www.healthvi.org/index.phy?page_id=92

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Children with Special Healthcare Needs Assessment Survey (CSHNS)

Sponsor: U.S. Department of Health and Human Services (DHHS)/Health Resources and Services Administration (HRSA) —Maternal & Child Health Bureau Program

Description: Title V Maternal & Child Health Bureau Program is an assessment on the size and characteristics of the population of children with special healthcare needs (CSHCN) or who are screened positive for having a possible chronic or disabling condition. Collects data on socio-demographic characteristics, SES, mental and emotional health, health status, health insurance, income level, prescription medication, specialty medical care, vision care, mental health care, specialized therapies, dental care, community-based and family centered measures.

Relevant Infant and child well-being Policy Issues:

Unit of Children age 0 to 18 years Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or 2005 and later Frequency:

Data Medical encounter record Collection Methodology:

For M.Inkelas, N.Garro A Picture of Needs for Children With Special Health-Care Additional Needs: What We Are Learning from the National Survey Information: Journal of Pediatric Nursing, Volume 20, Issue 3, Pages 207-210

Maternal and Child Health Services Title V Black Grant: State Narrative for American Samoa, October 4, 2007 www.perfdata.hrsa.gov/mchb/mchreports/documents/2008/Narratives/AS- Narratives.pdf

Maternal and Child Health Services Title V Black Grant: State Narrative for Federated States of Micronesia, Application for 2008; Annual Report for 2006,

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October 4, 2007 www.perfdata.hrsa.gov/mchb/mchreports/documents/2008/Narratives/FM- Narratives.pdf

Maternal and Child Health Services Title V Black Grant: State Narrative for Marshall Islands, Application for 2008; Annual Report for 2006, October 4, 2007 www.perfdata.hrsa.gov/mchb/mchreports/documents/2008/Narratives/MH- Narratives.pdf

Maternal and Child Health Services Title V Black Grant: State Narrative for Northern Mariana Islands, Application for 2008; Annual Report for 2006, October 4, 2007 www.perfdata.hrsa.gov/mchb/mchreports/documents/2008/Narratives/MP- Narratives.pdf

Maternal and Child Health Services Title V Black Grant: State Narrative for Palau, Application for 2008; Annual Report for 2006, October 4, 2007 www.perfdata.hrsa.gov/mchb/mchreports/documents/2008/Narratives/PW- Narratives.pdf

Maternal and Child Health Services Title V Black Grant: State Narrative for Virgin Islands, Application for 2008; Annual Report for 2006, October 4, 2007 www.perfdata.hrsa.gov/mchb/mchreports/documents/2008/Narratives/VI- Narratives.pdf

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Children with Special Needs Registry

Sponsor: U.S. Department of Health and Human Services (DHHS)/Health Resources and Services Administration (HRSA) —Maternal & Child Health Bureau Program

Description: Provide support in the form of assistive devices to clients with special health needs and their caregivers. Provide healthcare services to clients with special needs. Monitor newborns and individuals less than 21 years with special health needs. Collected information on basic demographic information (DOB, gender, residence), mother and father information, disability.

Relevant Policy Infant and child well-being Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Guam, Scope: Republic of the Marshall Islands, Republic of Palau, U.S. Virgin Islands

Date or Daily Frequency:

Data Collection Medical encounter record Methodology:

For Additional Local Program Offices Information:

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Chronic Disease Program

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention—National Center for Chronic Disease Prevention and Health Promotion

Description: The program prevents, delays, detects and controls chronic diseases (Asthma, Diabetes, Hypertension and Injury, Cancer) by conducting studies to better understand the causes of these diseases, promote health behaviors and monitor the health of the population.

Relevant Policy Disease/Injury specific issues Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Guam, Scope: Federated States of Micronesia, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands

Date or Daily Frequency:

Data Collection Medical encounter record Methodology:

For Additional CDC—NCCDPHP Report. (2009). Chronic Diseases The Power to Prevent, Information: The Call To Control: At A Glance 2009. http://ww.cdc.gov/nccdphp/publications/AAG/pdf/chronic.pdf

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Decennial Census of Population

Sponsor: U.S. Department of Interior—Office of Insular Affairs and U.S. Department of Commerce—Bureau of the Census (U.S Territories only); and Independent governments of the Freely Associated States—Federated States of Micronesia, Republic of the Marshall Islands, Republic of Palau

Description: Collects demographic, social, economic and disability information on the entire population. Additional measures were included to the U.S. territory census.

Relevant Policy Demographic, social, economic and disability indicators Issues:

Unit of ALL households and members living in each household Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Guam, Scope: Federated States of Micronesia, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or Every 10 years Frequency:

Data Collection U.S. territory censuses were conducted by the government of each Insular Methodology: Area in partnership with the Census Bureau. The long form census questionnaire was administered to the entire population in the U.S. territories. Also additional questions were added to the U.S. territory census. The Freely Associated States conducted their own decennial census.

For Additional U.S. Census Bureau. (2005). American Samoa Summary File 2000: 2000 Information: Census of Population and Housing. Washington, DC http://www.census.gov/prod/cen2000/doc/sfas.pdf

U.S. Census Bureau. (2003). Commonwealth of the Northern Mariana Islands: 2000 Social, Economic, and Housing Characteristics. Washington, DC http://www.census.gov/prod/cen2000/phc-4-cnmi.pdf

U.S. Census Bureau. (2003). Guam: 2000 Social, Economic, and Housing Characteristics. Washington, DC http://www.census.gov/prod/cen2000/phc-4-guam.pdf

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Government of the Federated States of Micronesia. FSM Population. http://www.fsmgov.org/info/people.html

Economic Policy – Planning and Statistics Office. Main Results – 1999 Census. Majuro, Republic of the Marshall Islands http://www.spc.int/prism/Country/mh/stats/CensusSurveys/keyfig_99.htm

Office of Planning and Statistics. (2004). Republic of Palau 2000 Census. Koror, Republic of Palau http://www.palaugov.net/stats/PalauStats/Publication/Monography2000III.pdf

U.S. Census Bureau. (2003). U.S. Virgin Islands: 2000 Social, Economic, and Housing Characteristics. Washington, DC http://www.census.gov/prod/cen2000/phc-4-vi.pdf

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Demographic and Health Survey (DHS)

Sponsor: Asian Development Bank, AusAid and NZAid

Description: This pilot project with Solomon Islands, Tuvalu, and Nauru collected data on child health, men’s and women’s health, family planning, general health, health histories of families, environment health (water and sanitation) and domestic violence.

Relevant Health policy issues Policy Issues:

Unit of A total of 1,106 households had participated in the study; 1,070 females age 15- Analysis: 49 were interviewed including males age 15-59 in every second household.

Geographic Eight atolls around the Republic of the Marshall Islands Scope:

Date or 2007 Frequency:

Data With technical assistance from the Secretariat of the Pacific Community (SPC), Collection the Australian Bureau of Statistics, and Macro International Inc. a Household Methodology: Questionnaire, Women’s Questionnaire, and Men’s Questionnaire was administered. Covered over 1,200 households in eight atolls around the Marshall Islands

For RMI Press Release. (2009). Marshall Islands 2007 Demographic Health Survey Additional (DHS) Policy Notes. Information: http://www.yokwe.net/index.php?name=News&file=article&sid=2361

Demographic and Health Survey in Pacific Island Countries http://www.adb.org/Documents/TARs/REG/tar-stu-39074.pdf

Earth Trends Country Profile. Population, Health, and Human Well-Being— Marshall Islands http://74.125.95.132/search?q=cache:9ENgVR- 8JzsJ:earthtrends.wri.org/country_profiles/fetch_profile.php%3Ftheme%3D4% 26filename%3Dpop_cou_584.PDF+dem

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Dental Prevention Program of Elementary School Students

Sponsor: U.S. Department of Health and Human Services (DHSS)/Health Resource Service Administration—Maternal Child Health Bureau and an Inter-agency agreement with the Administration for Children and Families (ACF)

Description: To improve the oral health of children in Early Head Start and Health Start Programs. Preventative treatment in oral health and hygiene among elementary students between ages 6 to 13 years was administered.

Relevant Infant and child well-being Policy Issues:

Unit of Children Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Guam, Scope: Federated States of Micronesia, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or Between 2001 and 2007 Frequency:

Data Collaboration of local Dental Programs and Oral Health professionals from Collection U.S. universities/colleges, as well as the Association of State and Territorial Methodology: Dental Directors (ASTDD) to assess elementary student oral hygiene. Parental consent was required. The survey collected data on school, grades 1-8, school year, hospital number, basic demographic characteristics of the student, mouth exam, sealant, received fluoride, dental education, oral hygiene, toothbrush and toothpaste, number of teeth decay, missing and filled (DMFT), and students who required dental treatment (for tooth decay, tooth abscess, and any other abnormalities).

For Tut, O.M. “End-of-Project Final Report” Children’s Oral Health Care Access Additional Program. Information: http://www.mchlibrary.info/MCHBfinalreports/docs/H47MCO2052.pdf

Tut, O.M., Greer, M.H.K., Milgrom, P. (2003). “Republic of the Marshall Islands: Planning and Implementation of a Dental Caries Prevention Program for an Island Nation”. Pacific Health Dialog.

http://www.mchlibrary.info/databases/searchprojects.php?query=federated%20s

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tates%20of%20micronesia

Oral Health in Palau. http://www.cdc.gov/oralHealth/state_programs/OH_plans/PDF/palau.pdf

Association of State and Territorial Dental Directors (ASTDD). Evaluation Summary: ASTDD Health Start Oral Health Project. http://www.astdd.org/docs/EvaluatingtheASTDDHeadStartOralHealthProject4p agerfinal.pdf

Katz, L., Ripa, L.W., Peterson, M. Nursing caries in Head Start children, St Thomas, Virgin Islands: assessed by examiners with different dental backgrounds. Journal of Clinical Pediatric Dentistry 1992;16:124-8.

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Diabetes Prevention and Control Program

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention—National Center for Chronic Disease Prevention and Health Promotion

Description: State program adopting the mission of NCCDPHP to eliminate the preventable burden of diabetes through leadership, research, programs, and policies that translate science into practice. The program offers state-based diabetes prevention and control programs; capacity-building activities; improve treatment and outcomes for people with diabetes and their families; health care providers; and payers and purchasers of health care and policymakers.

Relevant Policy Disease/Injury specific issues Issues:

Unit of All individuals diagnosed with diabetes Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or Daily Frequency:

Data Collection Medical encounter record. Outreach and educational programs. Methodology:

For Additional CDC State-Based Diabetes Prevention & Control Programs. Information: http://www.cdc.gov/diabetes/states/index.htm#ter

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Emergency Health Program

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention—National Center for Environment Health, Emergency Preparedness and Response Branch

Description: Strengthen the capacity for emergency health preparedness and response among Pacific Island nations through 3 objectives: 1) measure preparedness among health and medical systems; 2) facilitate disaster planning among health sectors; and 3) develop indigenous emergency health education

Relevant Policy Healthcare services Issues:

Unit of Training administered to over 500 Pacific Island health professionals Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands

Date or Since 2002 Frequency:

Data Collection Pro-active partnership of governmental institutions, international agencies, Methodology: Pacific nations, the Pacific Basin Medical Association and PIHOA.

For Additional Centers for Disease Control and Prevention. Emergency Preparedness and Information: Response. http://www.bt.cdc.gov/publications/feb08phprep/background.asp

M. Keim. (2002). History of the Pacific Emergency Health Imitative (PEHI). Pacific Health Dialog; 9(1):146-9

U.S. Virgin Islands. Department of Health. Public Health Preparedness Office http://www.healthvi.org/index.php?page_id=93

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Epidemiology and Factor Analysis of Obesity, Type II Diabetes, Hypertension, and Dyslipidemia (Syndrome X)

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention—Preventive Health Service Capacity Building Grant; NRSA; NIH; Pew Foundation

Description: To fully understand the genetic determinants associated with obesity, diabetes, hypertension, and dyslipidemia among Kosraens. The study collected demographic, family information of biological parents, siblings, and children, smoking status, village of residence, and health status. Medical evaluations were also conducted to gather anthropometric measures (weight, height, waist, hip), serum chemistries (leptin, fasting blood sugar (FBS), insulin, total cholesterol (TC), triglycerides (TG), and apolipoproteins B and A-I (apo B and apo A-I) and blood pressure (BP) measurements.

Relevant Policy Health policy issues Issues:

Unit of Analysis: 2,188 Kosraens (age 20-85)

Geographic Five villages (Lelu, Malem, Tafunsek, Utwe and Welung) Scope:

Date or 1994 Frequency:

Data Collection Population based survey Methodology:

For Additional D. Shmulewitz, SB Auerbach, T Lehner, ML Blundell, JD Winick, LD Information: Youngman, V Skilling, SC Health, J Ott, M Stoffel, JL Breslow, JM Friedman. (2001). Epidemiology and Factor Analysis of Obesity, Type II Diabetes, Hypertension, and Dyslipidemia (Syndrome X) on the Island of Kosrae, Federated States of Micronesia. Human Heredity; 51:8-19

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Family Planning

Sponsor: U.S. Department of Health and Human Services (DHHS)/Office of Public Health and Science (OPHS), Office of Population Affairs (OPA), and Office of Family Planning (OFP)

Description: Title X funds for family planning services and regional training were allocated to the 10 Public Health Service Regional Offices to manage through a competitive review process, service and training grants, and monitor program performance. Family planning clinics offer low- to moderate- income women and male clients preventive health services through patient education; breast and pelvic exams; cervical cancer screening; pregnancy diagnosis and counseling; and STD and HIV/AIDS prevention education, counseling, testing and referrals.

Relevant Policy Maternal and women’s well-being Issues:

Unit of Low-income, uninsured, and under insured individuals Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and Virgin Islands

Date or Title X Family Planning Program begin since 1970 Frequency:

Data Collection Medical encounter record Methodology:

For Additional U.S. Department of Health and Human Services—Office of Population Information: Affairs. (2008). Title X Family Planning Program: Fact Sheet. Washington, DC http://www.hhs.gov/opa/pubs/download_pubs/titlex_fpp_fact_sheet_pdf.pdf

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Food Safety and Inspection

Sponsor: United States Department of Agriculture (USDA)—Food Safety and Inspection Service

Description: Provide product and hygiene inspection activities, process and food management systems audits. Food safety certification is issued to vendors involved in the preparation and sale of food for public consumption.

Relevant Policy Healthcare services Issues:

Unit of Food suppliers Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands

Date or Ongoing Frequency:

Data Collection Inspection of products, food supply, preparation and service areas, as well as Methodology: waste disposal methods and sites.

For Additional Eblen, D.R., Barlow, K.E., Naugle, A.L. (2006). U.S. Food Safety and Information: Inspection Service Testing for Salmonella in Selected Raw Meat and Poultry Products in the United States, 1998 through 2003: An Establishment-Level Analysis. Journal of Food Protection. 69(11):2600-2606. http://ddr.nal.usda.gov/bitstream/10113/22289/1/IND43855772.pdf

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Global Youth Tobacco Survey (GYTS)

Sponsor: World Health Organization (WHO) and U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention

Description: The GYTS is a school-based survey designed to enhance the capacity of countries to monitor tobacco use among youth and to guide the implementation and evaluation of tobacco prevention and control programmes. The GYTS uses a standard methodology for constructing the sampling frame, selecting schools and classes, preparing questionnaires, following consistent field procedures, and using consistent data management procedures for data processing and analysis. The information generated from the GYTS can be used to stimulate the development of tobacco control programmes and can serve as a means to assess progress in meeting program goals. In addition, GYTS data can be used to monitor seven Articles in the WHO FCTC.

Relevant Policy Youth and adolescent well-being Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, U.S. Virgin Islands

Date or 2007, 2001 Frequency:

Data Collection GYTS standard sampling methodology uses a two-stage cluster sample Methodology: design that produces samples of students in grades associated with students aged 13--15 years. Each sampling frame includes all schools (usually public and private) in a geographically defined area containing any of the identified grades. At the first stage, the probability of schools being selected is proportional to the number of students enrolled in the specified grades. At the second sampling stage, classes within the selected schools are randomly selected. All enrolled students in selected classes the day the survey is administered are eligible to participate. Student participation is voluntary and anonymous using self- administered data collection procedures. The GYTS sample design produces representative, independent, cross-sectional estimates for each

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sampling frame.

For Additional Global Youth Tobacco Surveillance, 2000-2007 Information: http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5701a1.htm

Palau Youth Tobacco Survey Report http://www.who.int/tobacco/surveillance/Palau%202001%20YTS%20- %20Final%20Report.pdf

Smoking & Tobacco Use, Federated States of Micronesia Fact Sheet http://www.cdc.gov/tobacco/global/gyts/factsheets/wpr/2007/fsm_factsheet.htm

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Health Behavior and Lifestyle of Pacific Youth (HBLPY)

Sponsor: WHO Western Pacific Region Office; UNICEF Pacific; Ministries of Health, the Vanuatu Provincial Youth Councils, Tonga National Youth Congress and Pohnpei Youth Council, and; the Australian Centre for Health Promotion at the University of Sydney

Description: The study collected demographic information, substance abuse, social, family and school connectedness, ease of communication with family and peers, psychological health, injury and violence, personal hygiene, physical activity sedentary practices, community involvement, future job prospects, body image, use of psychoactive substances, food and drink consumption and anthropometric measures among students age 11 to 17 years.

Relevant Policy Youth and adolescent well-being Issues:

Unit of Individual Analysis:

Geographic Vanuatu, Tonga and the Federated States of Micronesia—Chuuk, Kosrae, Scope: Pohnpei and Yap

Date or 2000-2001 Frequency:

Data Collection Cross-sectional study based on representative national samples of the school Methodology: students of participating country. Students were selected using cluster random selection of primary and secondary schools. However, in FSM, the surveys were conducted in all secondary schools in the State of Pohnpei only. Modelled after the WHO Europe Health Behavior in School-aged Children (HBSC) surveys. The survey was administered in the local vernacular.

For Additional P Phongsavan, A Olatunbosun-Alakija, D Havea, A Bauman, B Smith, G Information: Galea, J Chen and Members of the Health Behavior and Lifestyle of Pacific Youth Survey Collaborating Group and Core Survey Teams. (2006). Health behavior and lifestyle of Pacific youth surveys: a resource for capacity building. Health Promotion International; 20(3):238-48

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Human Resource Study, Health and Education

Sponsor: World Health Organization

Description: Assessment of health workforce and training programs in the Western Pacific Region.

Relevant Policy Health administrative records Issues:

Unit of Individual Analysis:

Geographic Commonwealth of the Northern Mariana Islands, Federated States of Scope: Micronesia, and Republic of Palau

Date or 1998, 1999 Frequency:

Data Collection Systematic evaluation of the health workforce and training programs of health Methodology: professionals.

For Additional The Work of WHO in the Western Pacific Region, 1998-1999. Human Information: resources for health: Improving the health workforce. Health Services Development. http://www.wpro.who.int/NR/rdonlyres/B053D6B1-F382-494A-B98F- 12861A9ACCE2/0/chapter3_32.pdf

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Infant Mortality

Sponsor: U.S. Department of Heath and Human Services (DHHS)/Centers for Disease Control and Prevention—National Center for Health Statistics; Freely Associated States National Government Vital Statistics

Description: This collection provides information on infant deaths occurring in the U.S. Territories and Freely Associated States. Vital events for the U.S. Territories are shared with the Centers for Disease Control and Prevention, National Center for Health Statistics, for electronic processing.

Relevant Health policy issues Policy Issues:

Unit of Infant < 1 year Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated States of Scope: Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or Medical encounter record Frequency:

Data Administrative data. One-hundred percent of infant death certificates issued during the Collection calendar year. Methodology:

For Contact: National Center for Health Statistics Additional 3311 Toledo Rd Information: Hyattsville, MD 20782 1 (800) 232-4636 [email protected]

American Samoan Facts http://www.cdc.gov/nchs/fastats/popup_as.htm

Commonwealth of the Northern Mariana Islands (CNMI) http://www.cdc.gov/nchs/fastats/popup_mp.htm

Guam Facts http://www.cdc.gov/nchs/fastats/popup_gu.htm

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Federated States of Micronesia http://www.spc.int/prism/country/fm/stats/ http://www.indexmundi.com/federated_states_of_micronesia/infant_mortality_rate.html

Republic of the Marshall Islands http://www.spc.int/prism/country/mh/stats/ http://www.spc.int/prism/country/mh/stats/CensusSurveys/DHS07/finalrpt/rmidhs_ch8.pdf

Republic of Palau http://www.spc.int/prism/Country/PW/PWindex.html http://www.indexmundi.com/palau/infant-and-child-mortality.html

U.S. Dept. of Health and Human Services, National Center for Health Statistics. Mortality Detail File, 2005, 2004, 2003, 2002, 2001[United States] [Computer file]. ICPSR22960- v1, 04707-v1, 04706-v1, 04705-v1, 04708. Hyattsville, MD: U.S. Dept. of Health and Human Services, National Center for Health Statistics [producer], 2005. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2008-08-13. Doi:10.3886/ ICPSR22960, ICPSR04707, ICPSR04706, ICPSR04705, ICPSR04708. Inter-University Consortium for Political and Social Research: http://www.icpsr.umich.edu/

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Investigation in Lead Poisoning

Sponsor: U.S. Department of Health and Human Services/Centers for Disease Control and Prevention; U.S. Department of Interior—Office of Insular Affairs

Description: To assess lead poisoning among children in Yap and to determine where the lead exposure is derived from. Cross-section of children ages 1 to 12 years and living on the main island of Yap. Sample size of 425 children was interviewed for the study. Data was collected on demographic characteristics, ethnicity, household structure, school attending, dies, occupation within the home, neighborhood, blood sample, blood lead testing results, environmental sampling, and environmental exposure of children.

Relevant Policy Healthcare services Issues:

Unit of Individual Analysis:

Geographic Federated States of Micronesia Scope:

Date or 2000 Frequency:

Data Collection Radom sample of school children Methodology:

For Additional Mr. Peter Crippen, Pacific Regional Public Health Advisor, CDC Information: Dr. Victor Ngaden, Director of Yap State Hospital Dr. John Gilmatam, Chief of Public Health of Yap State Dr. Rachel Kaufmann, Co-Principal Investigator, CDC Pamela Meyer, CDC Gary Noonan, CDC

Allen, J.S., J.L. Laycock. (1997). Major Mental Illness in the Pacific: a Review. Pacific Health Dialog; Vol 4. No 2.

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Lymphatic Filariasis, Intestinal Parasites and Anaemia Investigations

Sponsor: World Health Organization (WHO) Collaboration Center for Control of Lymphatic Filariasis, James Cook University, School of Public Health and Tropical Medicine, Australia

Description: Investigate an unexpected focus of high lymphatic filariasis prevalence. This investigation was to prevent further spread to other islands, provide direct treatment, ensure cluster did not retard regional progress toward elimination, and build local capacity to field investigations into parasitic diseases of public health importance.

Relevant Policy Disease/Injury specific issues Issues:

Unit of Individual Analysis:

Geographic Federated States of Micronesia—islands of Weno, Houk and Satawal Scope:

Date or 2003 Frequency:

Data Collection Qualitative data collected using the Multiple Perspective Approach Methodology:

For Additional Wynd, S., Durrheim, D.N., Carron, J., Selve, B., Chaine, J.P., Leggat, P.A., Information: and Melrose, W. (2007). Socio-cultural insights and lymphatic filariasis control – lessons from the Pacific. Filaria Journal. 6(3). http://www.filariajournal.com/content/pdf/1475-2883-6-3.pdf

Wynd, S., Carron, J., Durrheim, D., Melrose, W., Leggat, P., Chaine, J.P., Selve, B., Canyon, D. Using the Multiple Perspective Approach to Understanding Local Issues Regarding Lymphatic Filariasis in the Pacific Region. James Cook University. http://www.jcu.edu.au/school/sphtm/antonbreinl/centers/lf/swposter.pdf

Lymphatic Filariasis Support Centre, A WHO Collaborative Centre for Lymphatic Filariasis based at the School of Public Health and Tropical Medicine, James Cook University, Townesville, Australia Annual Report, February 2003.

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http://www.jcu.edu.au/school/sphtm/antonbreinl/centers/lf/LFReport2003.pdf

Liang, J.L., King, J., Pa’au, M., Ichimori, K., and Lammie, P. Prevalence of Lymphatic Filariasis in American Samoa After Three Years of Improved Social and Mass Drug Administration. Presentation at the American Society of Tropical Medicine and Hygiene. www.astmh.org

Hughes RG, Sharp DS, Hughes MC, Akau'ola S, Heinsbroek P, Velayudhan R, Schulz D, Palmer K, Cavalli-Sforza T, Galea G. Environmental influences on helminthiasis and nutritional status among Pacific schoolchildren. Int J Envir Hlth Res. 2004;14:163–177. doi: 10.1080/0960312042000218589.

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Mental Health and Substance Abuse

Sponsor: U.S. Department of Health and Human Services (DHHS)/Substance Abuse and Mental Health Services Administration (SAMHSA)

Description: Provide screening and evaluation of clients with mental health and/or substance abuse problems. Interviewed youth in Yap proper and Outer Island middle schools and high schools to determine the extent of tobacco use.

Relevant Policy Disease/Injury specific issues Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or Daily Frequency:

Data Collection Medical encounter record Methodology:

For Additional SAMHSA’s National Mental Health Information Center Information: http://mentalhealth.samhsa.gov/databases/

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Monthly Morbidity Report

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease and Prevention

Description: Data for selected nationally notifiable diseases reported by the 50 states, New York City, the District of Columbia, and the U.S. territories are collated and published weekly in the Morbidity and Mortality Weekly Report (MMWR). Cases reported by state health departments to CDC for weekly publication are provisional because of ongoing revision of information and delayed reporting. Case counts in these query tables are presented as they were published in the MMWR . Therefore, numbers listed in later MMWR weeks may reflect changes made to these counts as additional information becomes available.

Relevant Policy Disease/Injury specific issues Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Guam, Scope: and U.S. Virgin Islands.

Date or Weekly and cumulative weekly data Frequency:

Data Collection Medical encounter records Methodology:

For Additional Centers for Disease Control and Prevention. 2009. Notifiable Diseases/Deaths Information: in Selected Cities Weekly Information. MMWR. 58(41);1156-1167. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5841md.htm

Disease Trends: State and Local Health Statistics http://www.cdc.gov/mmwr/distrnds.html

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Monthly Productivity Report by Health Facility

Sponsor: National and State Health Ministries/Departments

Description: Assessment of local health facilities

Relevant Policy Healthcare services Issues:

Unit of Primary Care Facility Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, U.S. Virgin Islands

Date or Weekly, monthly and quarterly Frequency:

Data Collection Tracking of services administered in each health facility Methodology:

For Additional Contact local Public Health Department Information:

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Mortality

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention—National Center for Health Statistics; and National Government Vital Statistics Department for the Federated States of Micronesia, Republic of the Marshall Islands and Republic of Palau

Description: This collection provides information on all deaths occurring in the U.S. Territories and Freely Associated States. Vital events for the U.S. Territories are shared with the National Center for Health Statistics, Centers for Disease Control and Prevention for electronic processing.

Relevant Policy Health policy Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or Daily Frequency:

Data Collection Administrative data—death certificates Methodology:

For Additional U.S. Dept. of Health and Human Services, National Center for Health Information: Statistics. Mortality Detail File, 2005, 2004, 2003, 2002, 2001[United States] [Computer file]. ICPSR22960-v1, 04707-v1, 04706-v1, 04705-v1, 04708. Hyattsville, MD: U.S. Dept. of Health and Human Services, National Center for Health Statistics [producer], 2005. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2008-08-13. Doi:10.3886/ ICPSR22960, ICPSR04707, ICPSR04706, ICPSR04705, ICPSR04708. Inter-University Consortium for Political and Social Research: http://www.icpsr.umich.edu/

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Natality

Description: This collection provides information on live births occurring in the U.S. Territories and Freely Associated States. Vital events for the U.S. Territories are shared with the National Center for Health Statistics, Centers for Disease Control and Prevention for electronic processing.

Relevant Policy Health policy Issues:

Unit of Newborn or Still Born Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, U.S. Virgin Islands.

Date or Daily Frequency:

Data Collection Administrative data—birth certificates Methodology:

For Additional U.S. Dept. of Health and Human Services, National Center for Health Information: Statistics. Natality Detail File, 2005, 2004, 2003, 2002, 2001[United States] [Computer file]. ICPSR22960-v1, 04707-v1, 04706-v1, 04705-v1, 04708. Hyattsville, MD: U.S. Dept. of Health and Human Services, National Center for Health Statistics [producer], 2005. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2008-08-13. Doi:10.3886/ ICPSR22960, ICPSR04707, ICPSR04706, ICPSR04705, ICPSR04708. Inter-University Consortium for Political and Social Research: http://www.icpsr.umich.edu/

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National Nutrition Survey

Sponsor: The United Nations Children’s Fund (UNICEF) and the Government of the Federated States of Micronesia (FSM)

Description: Designed to form a basis for future nutrition program and policy formulation at the national and state levels. Respond to concerns observed with changing food supply and dietary pattern, and the increasing incidence of clinical malnutrition among children and adults reported at the hospitals and clinics in FSM. Examine the status of Vitamin A deficiency among children in Kosrae and Yap. Data collected were demographic characteristics, feeding history, availability of home garden, number of vitamin A-rich plants grown, and vitamin/mineral intake for each child, caregiver information, reproductive history, dietary and nutritional knowledge of vitamin A and iron, vitamin/mineral intake, height-for-age, Z-score and blood sample to assess serum retinol and hemoglobin.

Relevant Policy Family well-being Issues:

Unit of Analysis: Individual

Geographic Federated States of Micronesia Scope:

Date or 1987/1988, 1999 Frequency:

Data Collection Survey, cross-section of the population. Systematic random design using Methodology: the village as the selection unit. Within the selection unites, all of the target populations were included, specifically, women 15 to 49 years and children 0 to 4 years covering 28 percent of each target population groups. The sample was designed to provide population-based on food situation. Approximately 350 to 400 cases were interviewed for the study per state and zone.

In 1999, separate cluster survey was conducted in each state using the proportionate-to-population size sampling method to address the uneven village sizes between Kosrae and Yap. The sample calculated for each state was designed to yield a prevalence estimate with 5 % error assuming 50% Vitamin A Deficiency prevalence.

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For Additional Elymore, J., A. Elymore, J. Badcock, F. Bach, S. Terrell-Percia. (1989). The Information: 1987/1988 National Nutrition Survey of the Federated States of Micronesia. Office of Health Services, Department of Human Resources, Federated States of Micronesia and South Pacific Commission, Noumea, New Caledonia.

Center for Disease Control and Prevention. (2001). Morbidity and Mortality Weekly Report (MMWR). Vitamin A Deficiency Among Children— Federated States of Micronesia, 2000; Vol 20: 24

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National Survey of Children with Special Healthcare Needs

Sponsor: U.S. Department of Health and Human Services (DHHS)/Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau

Description: The National Survey of Children with Special Health Care Needs (NS- CSHCN) provides a consistent source of both National- and State-level data on the size and characteristics of the population of CSHCN. This survey, sponsored by HRSA's MCHB and carried out by the Centers for Disease Control and Prevention’s National Center for Health Statistics, provides detailed information on the prevalence of CSHCN in the Nation and in each State, the demographic characteristics of these children, the types of health and support services they and their families need, and their access to and satisfaction with the care they receive.

Relevant Policy Infant and child well-being Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated States Scope: of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands

Date or Daily Frequency:

Data Collection Medical encounter records Methodology:

For Additional McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck P, Information: Perrin J, Shonkoff J, Strickland B. A new definition of children with special health care needs. Pediatrics, 102(1):137–140, 1998.

American Samoa Snapshot https://perfdata.hrsa.gov/mchb/TVISReports/Snapshot/snapshot.aspx?statecode=AS

Commonwealth of the Northern Mariana Islands Snapshot https://perfdata.hrsa.gov/mchb/TVISReports/Snapshot/snapshot.aspx?statecode=MP Federated States of Micronesia Snapshot 6-42

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https://perfdata.hrsa.gov/mchb/TVISReports/Snapshot/snapshot.aspx?statecode=FM

Guam Snapshot https://perfdata.hrsa.gov/mchb/TVISReports/Snapshot/snapshot.aspx?statecode=GU

Republic of the Marshall Islands Snapshot https://perfdata.hrsa.gov/mchb/TVISReports/Snapshot/snapshot.aspx?statecode=MH

Republic of Palau Snapshot https://perfdata.hrsa.gov/mchb/TVISReports/Snapshot/snapshot.aspx?statecode=PW

U.S. Virgin Islands Snapshot https://perfdata.hrsa.gov/mchb/TVISReports/Snapshot/snapshot.aspx?statecode=VI

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Newborn Registry

Description: Monitor the health status of newborns

Relevant Policy Infant and child well-being Issues:

Unit of Individual babies and children 0 to 5 years Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands.

Date or Daily Frequency:

Data Collection Self administered questionnaire sent to immunization program managers that Methodology: measure enrollment of a registry’s target population, which is the percentage of children in the catchment areas. Focus group research is conducted with the managers and developers to achieve consensus on the 12 functional standards.

For Additional Centers for Disease Control and Prevention. (2000). Progress in Development Information: of Immunization Registries—United States 1999; 49(13) http://www.cdc.gov/mmwr/PDF/wk/mm4913.pdf

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Nursing Home Facility

Sponsor: National Department of Health and Human Services

Description: The 6 senior centers throughout the Virgin Islands territory: St Thomas— Anna’s Retreat and Project Strive; St Croix—Richmond and Aldershville; and St. John—St. Ursula and Adrian provide elder care services to seniors with severe disabilities and who may require extended supervision.

Relevant Policy Elder well-being Issues:

Unit of Individual Analysis:

Geographic U.S. Virgin Islands Scope:

Date or Daily Frequency:

Data Collection Medical encounter record Methodology:

For Additional U.S. Virgin Islands Department of Human Services Information: http://www.dhs.gov.vi/home/index.html http://www.dhs.gov.vi/seniors/Socio_Rec_Program.html

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Oral Health

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease and Prevention/Health Resources and Services Administration (HRSA), World Health Organization and National Governments

Description: Provide curative and preventative oral health care services to all age groups. Specifically, tooth construction, root canal cleaning, tooth extraction, dental examination, sealant, oral health education and emergency services are provided locally.

Relevant Policy Disease/Injury specific issues Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, Virgin Islands.

Date or Daily Frequency:

Data Collection Dental encounter records Methodology:

For Additional Pacific Basin Dental Association. (2006). Dental Public Health Activities Information: Descriptive Summaries http://www.astdd.org/statepractices/pdf/SUM41002PWpbdaheadstartforum.pdf

American Samoa http://www.astdd.org/index.php?template=tprogramselected.php&state=AS

Commonwealth of the Northern Mariana Islands http://www.astdd.org/index.php?template=tprogramselected.php&state=MP

Federated States of Micronesia http://www.astdd.org/index.php?template=tprogramselected.php&state=FM

Guam http://www.astdd.org/index.php?template=tprogramselected.php&state=GU

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Republic of the Marshall Islands http://www.astdd.org/index.php?template=tprogramselected.php&state=MH

Republic of Palau http://www.astdd.org/index.php?template=tprogramselected.php&state=PW

U.S. Virgin Islands http://www.astdd.org/index.php?template=tprogramselected.php&state=VI

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Oral Health Survey of Young Children

Sponsor: Okayama University, Japan; University of Washington Pacific Islands Continuing Clinical Education Program, National Governments

Description: To determine the prevalence of dental caries and caries activity distribution among 3- to 6 year old children in Yap, as well as Majuro. Examine alcohol and drug-related problems in Micronesia. A total 175 children were included in the survey for Yap. The sample for Majuro is unclear. Collected data on demographic characteristics of children, Cariostat (CAT) testing, caries activity tests, acid production in dental plaque, untreated decay (d/dmft).

Relevant Policy Infant and child well-being Issues:

Unit of Individual Analysis:

Geographic Commonwealth of the Northern Mariana Islands, Federated States of Scope: Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau

Date or 1986-87, 1990s, 2002 Frequency:

Data Collection Personal interview and examination Methodology:

For Additional Nakai, Y., P. Milgrom, K. Larson, V. Ngaden, T. Shimono, S. Information: Matsumara. Oral Health Status of Young Children in Yap, Federated States of Micronesia. Presentation at The IADR/AADR/CADR 80th General Session (March 6-9, 2002).

Tut, O.K., Greer, M.H.K., Milgrom, P. Republic of the Marshall Islands: Planning and Implementation of a Dental Caries Prevention Program for an Island Nation. (2005). Public Health Dialog; 12(1): 118-123.

Vane ES. Oral Health Survey of School Children Age 6 and 12 Years in the Solomon Islands. M.S. Thesis BDS(Fiji) http://ses.library.usyd.edu.au/bitstream/2123/4217/1/0444.pdf

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Out-Patient and In-Patient Survey

Sponsor: Federated States of Micronesia Yap State Hospital

Description: Self evaluation of medical treatment and health services by in-patient and out- patient seeking medical attention at local hospitals and community centers. The study is design to obtain quality assurance audit data on healthcare and healthcare delivery.

Relevant Policy Healthcare services Issues:

Unit of Adults only Analysis:

Geographic Federated States of Micronesia—Yap Scope:

Date or Administered locally Frequency:

Data Collection Random selection of patients Methodology:

For Additional Contact Director of Public Health in Yap Information:

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Palau Community Health Assessment

Sponsor: Ministry of Health, Bureau of Public Health

Description: Comprehensive health assessment of all household members living in Palau.

Relevant Policy Health policy issues Issues:

Unit of Household Analysis:

Geographic Republic of Palau Scope:

Date or 2003 Frequency:

Data Collection National Methodology:

For Additional Contact Dr. Stevenson Kuartei Information: Minister of Health Palau Ministry of Health

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Palau Health Survey

Sponsor: Ministry of Health, Bureau of Public Health

Description: Comprehensive health survey

Relevant Policy Health policy issues Issues:

Unit of Household Analysis:

Geographic Republic of Palau Scope:

Date or 1990-1991 Frequency:

Data Collection Simple random sample using a cross-sectional design Methodology:

For Additional Republic of Palau “Plus 5” Review of the 2002 Special Session Information: on Children and World Fit for Children Plan of Action Country Report http://www.unicef.org/worldfitforchildren/files/Palau_WFFC5_Report.pdf

UNGASS Country Report – 2006 Republic of Palau http://data.unaids.org/pub/Report/2006/2006_country_progress_report_palau_en.pdf

WHO Global Infobase: Palau Most Recent National Survey(s) for Chronic Non Communicable Disease Risk Factors https://apps.who.int/infobase/reportviewer.aspx?uncode=585&rptcode=BCP&dm=18

WHO Global Infobase https://apps.who.int/infobase/mddetails.aspx?surveycode=101155a1

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Pregnant Women’s First Dental Visit

Sponsor: Federated States of Micronesia National Government, Yap State Government

Description: Provide dental treatment (cleaning, tooth extractions, filling and fluoride varnish application) and oral health education to pregnant women on their first prenatal visit. This service is applied once during each pregnancy. Data was collected on demographic information (age, gender, education and residence), oral hygiene information (treatment, findings for cavity or tooth attention).

Relevant Policy Maternal and women’s well-being Issues:

Unit of Individual Analysis:

Geographic Federated States of Micronesia Scope:

Date or Daily Frequency:

Data Collection Dental encounter record Methodology:

For Additional Contact local dentist Information:

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Pre-natal First Visit Registry

Sponsor: Federated States of Micronesia Federal Government, Yap State Government

Description: Track first pre-natal visit to weekly clinic. The data collected include basic demographic information on the mother (DOB, mother’s age, education, resident and occupation), number of pregnancies, number of abortions, number of children born, number of living children, risk factor, pregnancy interval, hepatitis B status, tetanus toxide, postpartum, sexually transmitted disease.

Relevant Policy Infant and child well-being Issues:

Unit of Individual Analysis:

Geographic Federated States of Micronesia Scope:

Date or Daily Frequency:

Data Collection Medical encounter record Methodology:

For Additional Contact local Maternal Child Health Program Coordinator Information:

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Sanitation and Environment

Sponsor: National Government

Description: Assessment of facilities and food preparation areas that cater to the general public to ensure that proper disposal of waste and safety procedures are in full compliance with local safety codes.

Relevant Policy Health policy issues Issues:

Unit of Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, Virgin Islands

Date or Daily Frequency:

Data Collection Site visits and completion of inspection forms Methodology:

For Additional Contact local Public Health Programs on Sanitation and Environment Information:

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Sexually Transmitted Infection (STI)/HIV/AIDS Prevention, Testing and Screening

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention —Division of HIV Prevention; Health Resources and Services Administration—Ryan White HIV/AIDS Program

Description: Track clients with Sexually Transmitted Infections (STIs) and HIV/AIDS incidence. Data collected include demographic information (person id, data, age, gender, ethnicity, employment status, occupation status, education level, contact information and residence-municipality), previous STI/HIV test, test results, sexual orientation, and reason for screening, follow-up on patient contact, patient follow-up 1 & 2, treatment received, treatment status, reason for test, risk group, pre-test counseling, pre-test consent, HIV AB test results, and HIV antibody test.

Relevant Policy Disease/Injury specific issues Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands

Date or Daily program routine Frequency:

Data Collection Medical encounter record Methodology:

For Additional Centers for Disease Control & Prevention. (2007). HIVAIDS Surveillance Information: Report: Cases of HIV Infection and AIDS in the United States and Dependent Areas, 2007. Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Coordinating Center for Infectious Diseases; Vol. 19

Centers for Disease Control & Prevention. (2002). HIV/AIDS Surveillance Summaries; 13(2):1-44

NOTE: Electronic reports of local HIV and AIDS surveillance were not

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available for the following areas: American Samoa, Guam, Commonwealth of the Northern Mariana Islands, Puerto Rico, and the U.S. Virgin Islands

Health Resources and Services Administration—The Ryan White HIV/AIDS Program http://hab.hrsa.gov/findcare/aboutryanwhitecare.htm

World Health Organization. (2000). STI/HIV Guidelines for HIV/AIDS, STI, and Behavioral Risk Factors Surveillance, Pacific Island Countries and Areas.

Secretariat of the Pacific Community. (2004). The Pacific Regional Strategy on HIV/AIDS 2004-2008. HIV/AIDS & STI Section, PHP.

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STEPS Survey

Sponsor: World Health Organization (WHO)

Description: WHO STEPwise approach to chronic disease risk factor surveillance.

Relevant Youth and adolescent well-being Policy Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated States of Scope: Micronesia, Republic of the Marshall Islands, Republic of Palau

Date or 2004, 2007 Frequency:

Data Face-to-face interview of a cross-section of the adult population Collection Methodolog y:

For Hosey G, Aitaoto N, Satterfied D, Kelly J, Apaisam CJ, Belyeu-Camacho T, deBrum I, Additional Luces PS, Rengiil A, Turituri P. (2009). The Culture, Community, and Science of Type 2 Information: Diabetes Prevention in the US Associated Pacific Islands. Preventing Chronic Disease, Public Health Research, Practice, and Policy. Vol 6(3).

Secretariat of the Pacific Community. (2009). Pacific countries and territories take up the battle against NCDs http://www.spc.int/hpl/index.php?option=com_content&task=blogcategory&id=19&Item id=48

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Suicide Data

Sponsor: Micronesian Seminar (MicSem), National Government and Public Health Programs

Description: Systematic monitoring of suicide attempts and deaths to help inform the development of suicide prevention strategies and reduce suicide mortality

Relevant Policy Disease/Injury specific issues Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands

Date or Daily Frequency:

Data Collection Medical encounter record Methodology:

For Additional Hezel, F.X. Suicide in the Micronesian Family. MicSem Articles. Information: http://www.micsem.org/pubs/articles/suicide/frames/suifamilyfr.htm

Hezel, F.X. Truk Suicide Epidemic and Social Change. MicSem Articles. http://www.micsem.org/pubs/articles/suicide/suiepid.htm

Contact local Public Health Department Program Coordinator

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Traumatic Brain Injury

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention—National Center for Injury Prevention and Control

Description: CDC surveillance of traumatic brain injury to improve injury control programs, reduce morbidity, mortality, severity, disability and costs associated with injury.

Relevant Policy Disease/Injury issues Issues:

Unit of Individual Analysis:

Geographic American Samoa, Federated States of Micronesia, Commonwealth of the Scope: Northern Mariana Islands, Guam, Republic of the Marshall Islands, Republic of Palau, U.S. Virgin Islands

Date or Daily Frequency:

Data Collection Medical encounter record Methodology:

For Additional National Center for Injury Prevention and Control Information: http://www.cdc.gov/ncipc/tbi/TBI.htm

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Tuberculosis (TB)/Leprosy and Hansen’s Disease

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention, World Health Organization (WHO)

Description: Develop TB Registry to monitor the prevalence of Tuberculosis (TB), harmonize set of data elements, as well as standardize diagnosis and treatment protocol to blend with core WHO DOTS procedures with certain enhancements from the Centers for Disease Control and Prevention (CDC). The Secretariat for the Pacific Community helped develop an electronic database to collect the information and to generate agency and country reports. Data collected include demographic information (age, DOB, gender, occupation, address), health zone, name of treatment center, type of patient, hospitalization, tuberculin skin test, chest x-ray, treatment start date, regimen, disease site, name of health facility, patient TB status by type and grading system.

Relevant Policy Disease/Injury specific issues Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, U.S. Virgin Islands

Date or Daily Frequency:

Data Collection TB registry card is created and a journal entry log book is used to track Methodology: incidence of Tuberculosis (TB).

For Additional World Health Organization Report. (2009). Tuberculosis Control in the Information: Western Pacific Region. http://www.wpro.who.int/NR/rdonlyres/2894B832-5677-4BB1-B01F- 1962551F9304/0/tbcontrol_2009.pdf

CDC Recommendations for Counting Reported Tuberculosis Cases http://www.wpro.who.int/NR/rdonlyres/2894B832-5677-4BB1-B01F- 1962551F9304/0/tbcontrol_2009.pdf

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Vaccination Coverage Survey

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention — National Immunization Program

Description: Annual school vaccination surveys and biennial surveys of Head Start programs and licensed day care facilities were conducted to determine nationally representative vaccination coverage estimates for each population and help prevent outbreaks of vaccine-preventable diseases. The survey focused on poliovirus vaccine; diphtheria and tetanus toxoids and pertussis vaccine (DTP), diphtheria and tetanus toxoids (DT), and tetanus toxoid (Td); and measles, mumps, and rubella vaccines.

Relevant Policy Infant and child well-being Issues:

Unit of Children enrolled in kindergarten and first grade Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, U.S. Virgin Islands

Date or 1997 and 1998 school year Frequency:

Data Collection Children enrolled in Kindergarten through Methodology:

For Additional Jiles RB, Fuchs C, Klevens RM. (2000). Vaccination Coverage Among Information: Children Enrolled in Head Start Programs or Day Care Facilities or Entering School. MMWR Surveillance Summaries; 49(SS09):27-3. http://www.cdc.gov/mmwr/preview/mmwrhtml/ss4909a2.htm#tab3

Luman ET, Ryman TK and Sablan, M. Estimating vaccination coverage: Validity of household-retained vaccination cards and parental recall. Vaccine; 2(19): 2534-2539.

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Vitamin A Deficiency Survey

Sponsor: Centers for Disease Control and Prevention (CDC)/United Nations International Children’s Education Fund (UNICEF)

Description: To examine the prevalence of Vitamin A deficiency among preschool children in FSM, RMI and Palau. Vitamin A deficiency is known to cause anemia. Caregivers were asked about demographics, feeding history, availability of home garden, number of vitamin A-rich plants grown, vitamin/mineral supplement intake pertaining to each child, caregiver information on demographics, reproductive history, dietary and nutritional knowledge about vitamin A and iron, vitamin/mineral supplement intake, child height and weight, blood to assess serum retinol. The study carried out in Palau found no clinical signs of Vitamin A deficiency.

+Relevant Infant and child well-being Policy Issues:

Unit of Total of 200 preschool children—CNMI; total of 498 preschool children— Analysis: FSM, (270 in Kosrae) and (228 children in Yap); 919 preschool children— RMI; and their caregivers respectively.

Geographic Federated States of Micronesia—Kosrae and Yap; Republic of the Marshall Scope: Islands, Republic of Palau

Date or November 1999—FSM; Between September and November 1994—RMI Frequency:

Data Collection Cluster survey—FSM; Community-based survey—RMI, Palau Methodology:

For Additional World Health Organizations (WHO). Prevalence of Vitamin A deficiency Information: (VAD) in the Western Pacific Region Table. www.wpro.who.int/NR/rdonlyn/F48F2722-5FE8-496B-ABCC- 784C5F36D8FB/0/mic.pdf

Centers for Disease Control and Prevention. (2001). Vitamin A Deficiency Among Children—Federated States of Micronesia. MMWR Morbidity and Mortality Weekly Report: 50(24) 509-512.

Palafox NA, Gamble MV, Dancheck B, Ricks MO, Briand K and Semba RD. (2003). Vitamin A deficiency, iorn deficiency, and anemia among preschool children in the Republic of the Marshall Islands. Nutrition: Nutrition; 19(5),

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405-408.

Gamble MV, Palafox NA, Dancheck D, Ricks MO, Briand K and Semba RD. (2004). Relationship of vitamin A deficiency, iron deficiency, and inflammation to anemia among preschool children in the Republic of the Marshall Islands: European Journal of Clinical Nutrition; 58, 1396-1401.

Maqsood M, Dancheck B, Gamble MV, Palafox NA, Ricks MO, Briand K and Semba RD. (2004). Vitamin A deficiency and inflammatory markers among preschool children in the Republic of the Marshall Islands. Nutrition Journal; 3:21.

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Well-Baby Dental Program

Sponsor: National Government

Description: Provide fluoride varnish, oral health education, examination and dental treatment of children and toddlers less than 6 years. Collected demographic information (age, gender, place of residence), oral hygiene information (treatment, education, findings for cavity or tooth attention).

Relevant Policy Infant and child well-being Issues:

Unit of Individual Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Federated Scope: States of Micronesia, Guam, Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands

Date or Daily Frequency:

Data Collection Dental encounter records Methodology:

For Additional Contact local chief dental officer Information:

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Well-Men’s Survey

Sponsor: Secretariat of the Pacific Community (SPC), CNMI Department of Public Health

Description: The survey is of men (age 18+ years) who have sex with other men in Saipan and collects information on men’s sexual behaviors, alcohol and drug use, and HIV knowledge and attitudes.

Relevant Policy Paternal and men’s well-being Issues:

Unit of Individual Analysis:

Geographic Commonwealth of the Northern Mariana Islands Scope:

Date or 2006 Frequency:

Data Collection Interviewer administered questionnaire Methodology:

For Additional Contact: Joe Villagomez, Information: Secretary of Public Health Saipan Public Health Department Email: [email protected]

Tim Sladden Surveillance Specialist—HIV/AIDS & STIs SPC, BPD5, Noumea Cedex, New Caledonia Email: [email protected]

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Well-Women’s Survey

Sponsor: Secretariate of the Pacific Community (SPC), CNMI Department of Public Health

Description: The survey collected information on women’s sexual behaviors provides tests for sexually transmitted infections (STIs) such as syphilis, hepatitis B, Chlamydia, gonorrhea and HIV to help improve the health and health services for pregnant women, as well as reduce STIs.

Relevant Policy Disease/Injury specific issues Issues:

Unit of Pregnant women attending prenatal clinic (PNC) for their first prenatal check- Analysis: up

Geographic Commonwealth of the Northern Mariana Islands Scope:

Date or 2006 Frequency:

Data Collection Total sample of 300 pregnant women recruited from the Northern, Central Methodology: and Southern clinics of CNMI. The sample was proportional to the number of births or number of prenatal patients served in each clinic. The questionnaire was administered by clinic staff interviewers.

For Additional Contact: Joe Villagomez, Information: Secretary of Public Health Saipan Public Health Department Email: [email protected]

Tim Sladden Surveillance Specialist—HIV/AIDS & STIs SPC, BPD5, Noumea Cedex, New Caledonia Email: [email protected]

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Women Infant and Child (WIC) Program

Sponsor: U.S. Department of Agriculture—Food and Nutrition Service

Description: Special Supplemental Nutrition Program for Women, Infants, and Children - better known as the WIC Program designed to safeguard the health of low- income women, infants, & children up to age 5 who are at nutritional risk by providing nutritious foods to supplement diets, information on healthy eating, and referrals to health care. Older adults and disabled are eligible to participate in the WIC program.

Relevant Policy Healthcare services Issues:

Unit of Low-income women, infants and children up to age 5 Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Guam, and Scope: U.S. Virgin Islands

Date or Daily Frequency:

Data Collection Medical encounter record Methodology:

For Additional Nutrition Assistance Block Grants (NABG) Information: http://www.fns.usda.gov/cga/FactSheets/NABGP_Quick_Facts.htm

Supplemental Nutrition Assistance Program http://www.fns.usda.gov/snap/government/FY07_Allot_Deduct_AKHIGUVI.htm

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Youth Health Survey

Sponsor: World Health Organization

Description: Study to describe the sexual risk behaviors of youth within the Pacific Island nations of Vanuatu, Tonga and the Federated States of Micronesia.

Relevant Policy Youth and adolescent well-being Issues:

Unit of Youth aged 15-19 years not attending school Analysis:

Geographic Federated States of Micronesia, Tonga, Vanuatu Scope:

Date or 2000-2001 Frequency:

Data Collection Surveys were conducted with youth aged 15-19 years and not attending Methodology: school in the three countries. A sample of 390 Ni-Vanuatu youth from the Shefa Province, 934 youth from three island provinces of Tonga and 92 youth from Pohnpei, the main island of the four island states of the Federated States of Micronesia, were interviewed in gender-specific groups. Questions were asked about sexual behaviors that may contribute to unintended pregnancy or sexually transmitted infections (STIs).

For Additional Information: Corner, H., Rissel, C., Smith, B., Forero, R., Olatunbosum-Alakija, A., Phongsavan, P., Havea, D. (2005). Sexual health behaviors among Pacific Island youth in Vanuatu, Tonga and the Federated States of Micronesia. Health Promotion Journal Australia; 16(2):144-50.

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Youth Risk Behavior Surveillance Survey

Sponsor: U.S. Department of Health and Human Services (DHHS)/Centers for Disease Control and Prevention (CDC)—Davison of Adolescent and School Health, National Center for Chronic Disease Prevention and Health Promotion

Description: The Youth Risk Behavior Surveillance System (YRBSS) monitors six categories of priority health-risk behaviors among youth -- behaviors that contribute to unintentional injuries and violence; tobacco use; alcohol and other drug use; sexual behaviors that contribute to unintended pregnancy and sexually transmitted diseases, including human immunodeficiency virus infection; unhealthy dietary behaviors; and physical activity. In additional YRBSS monitors the prevalence of obesity and asthma.

Relevant Policy Youth and adolescent well-being Issues:

Unit of Individual students in grades 9—12 Analysis:

Geographic American Samoa, Commonwealth of the Northern Mariana Islands, Guam, Scope: Republic of the Marshall Islands, Republic of Palau, and U.S. Virgin Islands

Date or January 2007 – June 2007 Frequency:

Data Collection School-based survey Methodology:

For Additional J Lippe, N Brener, L Kann, S Kinchen, W Harris, T McManus, N Speicher. Information: (2008). Youth Risk Behavior Surveillance---Pacific Island United States Territories, 2007. CDC-MMWR; 57(SS12);28-56 http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5172a2.htm

N Brener, L Kann, S. Kinchen, JA Grunbaum, L Whalen,D. Eaton, J Hawkins, J Ross. (2004). Methodology of the Youth Risk Behavior Surveillance System. CDC-MMWR; 53(RR12);1-13 http://www.ede.gov/mmwr/preview/mmwrhtml/rr5312.htm

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7. Other Data Sources

Admixture Mapping Schizophrenia Genes in Oceanic Palau

Funded by the National Institute on Mental Health (NIMH), this study sought to identify genes that underlie liability to schizophrenia by using the special features of Palau. To map liability genes, the study focused on linkage and LD analyses. Statistical methods were developed to complement the molecular analyses for the LD component of the study.

Additional information about this study can be found at:

PI: Bernie Devlin Email: [email protected] Institution: UNIVERSITY OF PITTSBURGH AT PITTSBURGH 350 THACKERAY HALL PITTSBURGH, PA 15260 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6319644&p_grant_num=1R01MH0632 95-01&p_query=&ticket=87709445&p_audit_session_id=403789797&p_keywords=

Age Related Neurodegenerative Disease in Micronesia

Funded by the National Institute on Aging (NIA), this project used epidemiologic, genetic, pathologic, and molecular biologic approaches to address three major issues: 1) relevant genetic and environmental risk factors, 2) the pathogenesis and development of tau pathology, and 3) the potential role of oxidative stress and mitochondrial dysfunction. The research provided critical insights into the etiology and pathogenesis of this major public health problem for the people of Guam, while also serving as a model for the study of analogous conditions seen elsewhere in the world.

Additional information about this study can be found at:

PI: Douglas Galasko Email: [email protected] Institution: UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DR, DEPT 0934 LA JOLLA, CA 92093-0934 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6163783&p_grant_num=5P01AG0143 82-04&p_query=&ticket=87710079&p_audit_session_id=403793949&p_keywords=

American Samoa Community Cancer Network

Funded by the National Cancer Institute (NCI), this project was designed to establish a sustainable infrastructure among Samoans in the U.S. Territory of American Samoa through the establishment of a sustainable infrastructure to: 1) promote cancer awareness within American Samoan communities; and 2) initiate a cancer research and training program to develop indigenous Samoan researchers. The target population was Samoans who live in the U.S. Territory of American Samoa. The project involved the collaboration of three agencies: 1) LBJ Tropical Medical Center (LBJ), 2) American Samoa Community College (ASCC); and 3) American Samoa Department of Health (DOH). Additional information about this study can be found at:

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PI: Victor Williams Tofaeono Email: [email protected] Other Contact: Phone: (684) 633-1412 Fax: (684) 633-1839 Institution: LYNDON BAINES JOHNSON TROPICAL MEDICAL CENTER P. O. BOX LBJ TMC PAGO PAGO, AS 96799 http://crchd.cancer.gov/cnp/pi-tofaeono-description.html

Bone Loss with Age—Epidemiology, Familial and Cross-Cultural Considerations

Funded by the National Institute on Aging (NIA), this project dealt with epidemiological, genetic, cross-sectional, longitudinal, and biomechanical aspects of bone loss among: 1) the participants of the Baltimore Longitudinal Study of Aging (BLSA); 2) genetic isolates of the Croatian Islands of Yugoslavia and the island of Guam in Micronesia; 3) senior athlete population; 4) long distance runners and relatively inactive normal controls; and 5) rats and dogs.

Additional information about this project can be found at:

PI: C. Plato http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=3802184&p_grant_num=1Z01AG0000 22-15&p_query=(bone+%26+loss+%26+age+%26+epidemiology+%26+familial+%26+cross- cultural+%26+considerations)&ticket=87778750&p_audit_session_id=403952329&p_audit_scor e=6&p_audit_numfound=1&p_keywords=bone+loss+age+epidemiology,+familial+cross- cultural+considerations

Cancer Control Needs among Native American Samoans

Funded by the National Cancer Institute (NCI), this study involved collaboration between the National Office of Samoan Affairs in Carson, California, and the University of California, Irvine, to conduct a Phase I study that would develop and validate needs assessment instruments to measure the effectiveness of cancer control methods among American Samoans. The three specific aims of the project were: 1) evaluating the existing data on the incidence of various cancers among American Samoans from the computerized cancer surveillance programs in Los Angeles County, California and Hawaii and from manually kept data in American Samoa; 2) developing a culturally sensitive survey instrument for the American Samoan population based upon the National Health Interview Survey (NHIS) and its Cancer Control Supplement; and 3) using the survey instrument to assess knowledge, attitudes, and practices regarding cancer in general and barriers to cancer preventive care in a random sample of American Samoans residing in Los Angeles County, California, Oahu, Hawaii, and American Samoa.

Additional information about this study can be found at:

PI: Pat Luce-Aoelua Institution: NATIONAL OFFICE OF SAMOAN AFFAIRS 20715 S AVALON BLVD, #200 CARSON, CA 90746 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=2864793&p_grant_num=3U01CA0644 34- 03S1&p_query=(cancer+%26+control+%26+needs+%26+native+%26+american+%26+samoans 7-2

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)&ticket=87778843&p_audit_session_id=403952329&p_audit_score=9&p_audit_numfound=18 &p_keywords=cancer+control+needs+native+american+samoans

Cognitive and Emotional Profile of Neuropsychiatric Disorders

Funded by the National Institute of Neurological Disorders and Stroke (NINDS), this study was a neuropsychological profile of dementia that was drafted for individuals with Alzheimer's disease, Huntington's disease, who were 'at risk' for Huntington's disease. The evaluations extended into memory, learning and perceptual areas, utilizing standard and experimental tasks, also establishing normative references for functional changes encouraged by the aging processes. These behavioral data were collated with biochemical and neuroradiometric measures, and independent indicators of deterioration and dementia were developed.

Additional information about this study can be found at:

PI: P. Fedio http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=4730805&p_grant_num=1Z01NS00020 0- 29&p_query=(Huntington%27s+%26+disease+%26+Alzheimer%27s+%26+neuroradiometric)&t icket=87903372&p_audit_session_id=404129746&p_audit_score=17&p_audit_numfound=1&p_ keywords=Huntington%27s+disease+Alzheimer%27s+neuroradiometric

Clinical Integration of Genetic Risk Assessment

Funded by the National Human Genome Research Institute (NHGRI), this study sought to characterize family physicians’ attitudes and practices related to the genetics of complex disorders. This information could be useful in understanding and shaping the dissemination of genetic medicine in ways that improve the standard of primary care practice. Specifically, the project proposed to conduct a two-phase study. The first phase was a web-based survey of AAFP members who delivered care in a broad array of practice settings in rural and urban communities around the United States, Puerto Rico, the Virgin Islands, and Guam. In the second phase, a sub- sample of those who completed the web survey was contacted; half were enrolled in a year-long, web-based curriculum related to medical genetics, and the other half was not enrolled in the curriculum.

Additional information about this study can be found at:

PI: Donald Hadley http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6988996&p_grant_num=1Z01HG2003 14- 01&p_query=(clinical+%26+integration+%26+genetic+%26+risk+%26+assessment)&ticket=87 778959&p_audit_session_id=403952329&p_audit_score=6&p_audit_numfound=3&p_keywords =clinical+integration+genetic+risk+assessment

Core—Clinical

Funded by the National Institute on Aging (NIA), this project supported studies into neurodegenerative disorders occurring on Guam, including amyotrophic lateral sclerosis (ALS), Parkinson's Dementia Complex (PDC), and late-life dementia clinically resembling Alzheimer's Disease (AD). Specific aims of Core B in this study were to: 1) recruit Chamorros aged 65 and older on Guam to support epidemiological and other studies; 2) screen subjects for cognitive,

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motor, and functional abilities; 3) conduct clinical, neurological, and neuropsychological assessment of participants who meet the criteria for detailed evaluation in the proposed prevalence and incidence studies; 4) establish clinical diagnoses; 5) follow existing patients with ALS, PDC, and Marianas Dementia, and evaluate and follow new patients with these disorders; 6) recruit subjects to undergo research MRI studies; 7) collect, store, and ship blood and CSF specimens; 8) obtain autopsy consent, and assist in brain autopsies and preparation of tissue, storage and shipment; 9) data acquisition and management; 10) supervise staff and maintain quality assurance of procedures and data; 11) provide consultation for study participants and their families and caregivers; 12) provide liaison with health care providers and government agencies; and 13) carry out education and training.

Additional information about this study can be found at:

PI: Douglas Galasko Email: [email protected] Institution: UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DR, DEPT 0934 LA JOLLA, CA 92093-0934 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6481378&p_grant_num=2P01AG0143 82- 069002&p_query=(core+%26+clinical+%26+guam+%26+marianas+%26+dementia)&ticket=87 845340&p_audit_session_id=404129746&p_audit_score=20&p_audit_numfound=1&p_keyword s=core+clinical+guam+marianas+dementia

Core—Neuropathology/Brain Bank

Funded by the National Institute on Aging, this study was designed to: 1) provide supervision and advice to the Clinical core (Core B) to enable the Program to obtain optimally fixed and preserved autopsy-derived brain specimens with a minimum amount of postmortem delay; 2) carry out MRI examinations on all fixed brain specimens; 3) perform dissection, preservation, and storage of received brain specimens and distribute appropriate tissue samples to investigators within the Program; 4) perform complete neuropathologic evaluation and diagnosis of each brain specimen; 5) determine the extent and distribution of relevant neuropathologic lesions in these specimens; 6) incorporate these data above in the neuropathology database; 7) obtain Guam- derived brain specimens obtained in conjunction with prior NINCDS registry studies that were evaluated neuropathologically and are being stored in the Brain Research Institute, Niigata, Japan; and 8) retain in a preserved state brain samples obtained in conjunction with the above and serve as a national/international brain bank repository to make available appropriate brain tissue specimens to qualified researchers.

Additional information on this study can be found at:

PI: Daniel Perl Institution: MOUNT SINAI SCHOOL OF MEDICINE OF NYU NEW YORK UNIVERSITY NEW YORK, NY 10029-6574 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6481379&p_grant_num=2P01AG0143 82- 069003&p_query=(core+%26+neuropathology/brain+%26+bank+%26+guam)&ticket=87845508 &p_audit_session_id=404129746&p_audit_score=20&p_audit_numfound=1&p_keywords=core +neuropathology/brain+bank+guam

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Development of an Intervention for Palauan Youth at Genetic Risk for Psychosis

Funded by Forgarty International Center (NIH-FIC), this project sought to build capacity among Palauan health care providers to conduct intervention research and pilot test an existing preventive-intervention program for the first time among Palauan adolescents at-risk for psychotic disorders. The first year of the project involved research training workshops, a clinical training workshop, and a workshop in culturally sensitive protocol development. The second year involved pilot testing a Palauan-adapted preventive-intervention program on a small sample of high-risk youth (n=30). The training component of the grant was designed for Palauan health care providers and utilized datasets previously collected from Palauan adolescents at-risk for psychotic disorders.

Additional information on this project can be found at:

PI: Paul Florsheim Email: [email protected] Institution: UNIVERSITY OF UTAH 75 SOUTH 2000 EAST SALT LAKE CITY, UT 84112 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=7122662&p_grant_num=1R21TW0078 03- 01&p_query=(development+%26+intervention+%26+palauan+%26+youth+%26+genetic+%26+ risk+%26+psychosis)&ticket=87713092&p_audit_session_id=403793949&p_audit_score=14&p _audit_numfound=1&p_keywords=development+intervention+palauan+youth+genetic+risk+psy chosis

Diabetes Care in American Samoa

Funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD), this study was designed to translate recent advances in diabetes care into clinical practice for the American Samoan community by improving methods of health care delivery and improving diabetes self management. The community health worker model was used to test an expanded diabetes care model.

The outcomes at a one-year follow-up included glycosolated hemoglobin testing (HbA1c), cardiovascular disease risk factors, diet and exercise behaviors, and adherence to diabetes care guidelines. The intervention builds upon best clinical practices for diabetes care by translating effective strategies to American Samoans. The translation of good diabetes care was designed as a model that could potentially be replicable in other ethnic minority populations suffering the burden of diabetes.

Additional information about this study can be found at:

PI: Stephen McGarvey Email: [email protected] Institution: BROWN UNIVERSITY 164 ANGELL STREET PROVIDENCE, RI 02912 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=7129138&p_grant_num=1R18DK0753 71-

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01&p_query=(diabetes+%26+care+%26+American+%26+Samoa)&ticket=87713229&p_audit_s ession_id=403793949&p_audit_score=39&p_audit_numfound=1&p_keywords=diabetes+care+A merican+Samoa

Epidemiologic Transition and NIDDM

Funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD), this population-based study assessed the prevalence of NIDDM in the U.S. Virgin Islands (U.S.V.I.), a predominantly African-American population. The prevalence of diabetes (3.5%) was intermediate, with low rates in Black Africans (1%) and higher rates in U.S. African-Americans (5.3%). The study tested the hypothesis that NIDDM is lower among African-Americans in the U.S. Virgin Islands than among those on the U.S. mainland. Data on physical activity and other lifestyle-associated factors was collected by personal interview. Blood chemistries for glucose, glycosylated hemoglobin, serum lipids/lipoproteins, C-peptides and insulin will also be performed.

Additional information about this study can be found at:

PI: Eugene Tull Email: [email protected] Institution: UNIVERSITY OF PITTSBURGH AT PITTSBURGH 350 THACKERAY HALL PITTSBURGH, PA 15260 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=2145730&p_grant_num=1R01DK0465 02- 01A1&p_query=(Epidemiologic+%26+Transition)&ticket=87713325&p_audit_session_id=4037 93949&p_audit_score=26&p_audit_numfound=2&p_keywords=Epidemiologic+Transition

Epidemiological and Genetic Studies of ALS/PD Complex of Guam

Funded by the National Institute on Aging (NIA), this study was designed to: 1) investigate the genetic and epidemiological factors contributing to the very high incidence of Amyotrophic Lateral Sclerosis and Parkinsonism Dementia (ALS/PD) on Guam; 2) evaluate the distribution of the various established genetic and anthropological markers among the normal Guamanian population and compare them with those of the ALS/PD patients; and 3) ascertain the effects of immobilization due to paralysis on bone density.

Additional information about the study can be found at:

http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=3808843&p_grant_num=1Z01AG0000 28- 14&p_query=(Epidemiological+%26+Genetic+%26+Studies+%26+ALS/PD+%26+Complex+% 26+Guam)&ticket=87713411&p_audit_session_id=403793949&p_audit_score=10&p_audit_nu mfound=1&p_keywords=Epidemiological+Genetic+Studies+ALS/PD+Complex+Guam

Epidemiology of Neurodegenerative Diseases in Micronesia

Funded by the National Institute on Aging (NIA), this study undertook a follow-up study of two previously well-established cohorts with amyotrophic lateral sclerosis (ALS) and Parkinson- dementia complex (PDC). Specifically, the scientific goals were to determine if familial

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clustering of ALS/PDC was still prevalent and whether or not the incidence of ALS/PDC is continuing to decrease. As a case control study, the hypothesis tested was that consumption of native food, specifically fadang, is a risk factor related to the development of ALS/PDC. The results of these efforts may provide a basis for establishing a potential Biological explanation for this unique occurrence of neurodegenerative diseases and may ultimately lead to specific intervention and preventive strategies.

Additional information about this study can be found at:

PI: Wigbert Wiederholt Email: [email protected] Location: UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DR, DEPT 0934 LA JOLLA, CA 92093-0934 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6234622&p_grant_num=1P01AG0143 82- 010001&p_query=(Epidemiology+%26+Neurodegenerative+%26+Diseases+%26+Micronesia)& ticket=87713612&p_audit_session_id=403793949&p_audit_score=14&p_audit_numfound=1&p _keywords=Epidemiology+Neurodegenerative+Diseases+Micronesia

Factors in Adolescent Suicide

Funded by the National Institute on Mental Health (NIMH), this research was designed to further an understanding of the socio-cultural processes underlying the adolescent suicide epidemic, which has developed concomitantly with a complex of adolescent adaptational problems (e.g., alcohol abuse, delinquency, psychiatric disturbance). The research explored in ethnographic perspective the socio-cultural context of adolescent suicide in one Micronesian locale (Chuuk), which preliminary studies show to be the area with highest incidence of adolescent suicides and attempts. Specifically, the study aims were to: 1) identify psychosocial precursors of suicidal behavior among Micronesian adolescents; 2) interpret the social meanings associated with suicide within the adolescent subculture; 3) elucidate the epidemic dynamics and collective aspects of suicidal behavior; and 4) further analyze previously collected case material in terms of the ethnographic data which emerge from this project.

Additional information about this study can be found at:

PI: Geoffrey White Institution: EAST-WEST CENTER 1601 EAST-WEST RD HONOLULU, HI 96848 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=4209532&p_grant_num=1R01MH0373 85- 01&p_query=(factors+%26+adolescent+%26+suicide)&ticket=87779590&p_audit_session_id=4 03952329&p_audit_score=6&p_audit_numfound=184&p_keywords=factors+adolescent+suicide

Family-Genetic Study of Youth at Risk for Schizophrenia

Funded by the National Institute on Mental Health (NIMH), this prospective study researched the genetic etiology of schizophrenia in Palau by focusing on high-risk (HR) offspring in the large multiplex schizophrenia families that have now been identified. All subjects were comprehensively assessed with a battery of clinical/psychosocial and neuropsychological

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measures plus two neurophysiological endophenotypes for schizophrenia, and followed up longitudinally for the development of psychopathology in order to accomplish three specific aims: 1) describe the genetic epidemiology of schizophrenia in HR offspring within multiplex families; 2) develop and test etiological models that describe how genetic liability, environmental factors, and individual traits interact to cause schizophrenia spectrum psychopathology; and 3) describe the phenomenology of schizophrenia in its developmental stages to facilitate early detection and intervention.

Additional information about this study can be found at:

PI: Marina Myles-Worsley Email: [email protected] Institution: UPSTATE MEDICAL UNIVERSITY RESEARCH ADMINISTRATION SYRACUSE, NY 13210 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=7502964&p_grant_num=7R01MH0541 86-11&p_query=(Family- Genetic+%26+Study+%26+Youth+%26+Risk+%26+Schizophrenia)&ticket=87713712&p_audit _session_id=403793949&p_audit_score=2&p_audit_numfound=8&p_keywords=Family- Genetic+Study+Youth+Risk+Schizophrenia+

Genetic Basis of Syndrome X on the Island of Kosrae

Funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD), this study proposed a series of genetic and clinical studies to elucidate the genetic basis of hypertension, obesity, diabetes and dyslipidemia. In studies completed in 1994, a medical evaluation was conducted and DNA was isolated from each of 2,364 Kosraeans over the age 20, nearly the entire adult population. To complete this genetic study, the investigators proposed applying modern methods in human genetics to map the genes that cause the components of Syndrome X. In addition, a follow-up clinical study was performed on the entire population of the island over 16 years old.

Additional information about this study can be found at:

PI: Jeffrey Friedman Email: [email protected] Institution: ROCKEFELLER UNIVERSITY NEW YORK, NY 10065-6399 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6130014&p_grant_num=1R01DK0562 08- 01A1&p_query=(genetic+%26+basis+%26+syndrome+%26+x+%26+island+%26+kosrae)&tick et=87769998&p_audit_session_id=403793949&p_audit_score=19&p_audit_numfound=1&p_ke ywords=genetic+basis+syndrome+x+island+kosrae

Genetic Studies in Achromatopsia

Funded by the National Center for Research Resources (NCRR), this study examined Achromatopsia, or complete color blindness, an autosomal recessive condition that is rare in the general population (<1/30,000), but very common among the people of Pingelap (1/14), who came from an island in the Federated States of Micronesia. The identification of the disease- causing gene has led to a better understanding of how we see color and how retinal cones

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function, to improved genetic counseling, and to potentially better treatments. In order to identify the gene, families which segregate achromatopsia were studied. Specifically, the goal of the study was to localize the second gene responsible for achromatopsia and isolate it. In order to meet these goals, families with achromatopsia must be studied.

Additional information about this study can be found at:

PI: Maria Karayiorgou Email: [email protected] Institution: ROCKEFELLER UNIVERSITY NEW YORK, NY 10065-6399 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6409920&p_grant_num=2M01RR0001 02- 36A10376&p_query=(genetic+%26+studies+%26+achromatopsia)&ticket=87770141&p_audit_s ession_id=403793949&p_audit_score=4&p_audit_numfound=1&p_keywords=genetic+studies+a chromatopsia

Genetic Study of Schizophrenia in an Ethnic Minority

Funded by the National Institute on Mental Health (NIMH), this study searched for major genes underlying schizophrenia using four strategies that can address the problems inherent in genetic linkage studies: 1) With respect to families/subjects, the investigators studied exceptionally large multiplex clans in Palau, Micronesia where the population has been geographically and ethnically isolated from outside genetic influences yet is not inbred. Given the large sibships found in these families, the large number of family members willing to participate, and the greater probability of genetic homogeneity across families in this geographic isolate, the power to detect linkage with these three families was equivalent to the power to detect linkage with 200 small- to medium- sized families. The investigators also ascertained all cases of schizophrenia in the area to be used for future linkage disequilibrium studies in areas of potential linkage found in the current project. 2) The investigators phenotyped the largest pedigrees using the standard diagnostic phenotype as well as two of the most promising endophenotypes for schizophrenia, SPEM and P50 sensory gating, which offer the advantages of higher penetrances and more clearly defined patterns of inheritance. 3) For genotyping these pedigrees, the investigators used a two-pronged approach, including polymorphic candidate genes or regions and a genome scan. 4) The data was analyzed according to the following specific plans for each study.

Additional information about the study can be found at:

PI: Marina Myles-Worsley Email: [email protected] Institution: UNIVERSITY OF UTAH 75 SOUTH 2000 EAST SALT LAKE CITY, UT 84112 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=2392980&p_grant_num=5R01MH0541 86- 02&p_query=(genetic+%26+study+%26+schizophrenia+%26+ethnic+%26+minority)&ticket=87 770228&p_audit_session_id=403793949&p_audit_score=8&p_audit_numfound=1&p_keywords =genetic+study+schizophrenia+ethnic+minority

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Myles-Worsley, M., Ord L., Blailes, F., Ngiralmau, H., & Freedman, R. P50 sensory gating in adolescents from a Pacific Island isolate with elevated risk for schizophrenia. Biological Psychiatry, 2004, 55: 663-667.

Genetics of CVD Risk Factors in Samoans

Funded by the National Heart, Lung, and Blood Institute (NHLBI), this study evaluated the role of known genes involved in lipid metabolism on serum lipid and apolipoprotein levels in 1,301 adults aged 29-59 years residing in American and Western Samoa who were exposed to the biobehavioral changes of modernization. Specifically, the study: 1) estimated the effects of dietary intake on lipid and apolipoproteins; 2) performed cross-sectional analyses of genetic factors influencing lipid and lipoprotein levels; and 3) performed statistical analyses to test hypotheses about gene-environment interactions including gene-gene interactions, in Polynesians from American Samoa and Western Samoa. Diet, physical activity and body size varied with exposure to the influences of economic modernization and the adoption of non- traditional behaviors. Specific hypotheses about the influence of genes on lipids, genetic interactions on lipids and about concrete environmental and specific gene interactions on lipid outcomes were tested based on cross-sectional data collected in 1994 and 1995.

Additional information about this study can be found at:

PI: Milyas Kamboh Email: [email protected] Institution: UNIVERSITY OF PITTSBURGH AT PITTSBURGH 350 THACKERAY HALL PITTSBURGH, PA 15260 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=2230089&p_grant_num=1R01HL0526 11- 01A1&p_query=(genetics+%26+cvd+%26+risk+%26+factors+%26+samoans)&ticket=8777038 2&p_audit_session_id=403793949&p_audit_score=6&p_audit_numfound=1&p_keywords=gene tics+cvd+risk+factors+samoans

Genetics of Physiological Schizophrenia Phenotypes

Funded by the National Center for Research Resources (NCRR), this study employed linkage and linkage disequilibrium using data from: 1) moderately sized Utah pedigrees; 2) a fully ascertained sample from the island population of Palau, Micronesia; and 3) schizophrenics and their first degree relatives form the isolated inbred populations of Dahestan, Russia. This was a "core lab only" protocol.

Additional information on this study can be found at:

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it_session_id=403952329&p_audit_score=7&p_audit_numfound=6&p_keywords=genetics+phys iological+schizophrenia

Genetics of Psychophysiological Schizophrenia Phenotypes

Funded by the National Institute on Mental Health (NIMH), this study combined information from variables measuring psychophysiological endopheno-types of smooth pursuit eye movement (SPEM) and the P50 evoked auditory response to investigate the genetics of schizophrenia. Studies were conducted in two unique populations, which allowed an underlying quantitative liability to schizophrenia: 1) 14 moderately-sized Utah pedigrees genotyped with over 500 highly informative micro satellite markers, so that a disease gene will map 5 cM or less from a genetic marker. These families had also been phenotyped with P50, and new pilot SPEM data were promising. 2) A sample from an isolated island population in Palau, Micronesia which included information from all living schizophrenics and their families. Because these are isolated populations, a gene contributing to disease susceptibility may be more likely to reside on a single ancestral haplotype.

Additional information about this study can be found at:

PI: Hilary Coon Email: [email protected] Institution: UNIVERSITY OF UTAH 75 SOUTH 2000 EAST SALT LAKE CITY, UT 84112 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=2445538&p_grant_num=5R29MH0520 55- 02&p_query=(Genetics+%26+Psychophysiological+%26+Schizophrenia+%26+Phenotypes)&tic ket=87770758&p_audit_session_id=403793949&p_audit_score=9&p_audit_numfound=1&p_ke ywords=Genetics+Psychophysiological+Schizophrenia+Phenotypes

Genome Scan for Obesity Susceptibility Loci in Samoans

Funded by the National Institute for Diabetes and Kidney Diseases (NIDDKD), this study conducted a genome-wide scan for obesity susceptibility loci among adult Samoans of Polynesia. The three specific components of the study were: 1) Obesity phenotypes were collected including fat mass and percent body fat, body mass index (BMI), fat distribution from circumferences and skin folds using anthropometry, and fasting serum leptin data, from 1,200 adults in approximately 60 extended pedigrees in American Samoa and 60 extended pedigrees in Western Samoa; 2) A genome-wide scan was conducted using a panel of highly polymorphic genetic markers with average spacing of 10 cM between markers; 3) The location of obesity susceptibility loci was determined by multipoint linkage analysis primarily based on the powerful and flexible variance components approach.

Additional information about this study can be found at:

PI: Stephen McGarvey Email: [email protected] Institution: BROWN UNIVERSITY 164 ANGELL STREET PROVIDENCE, RI 02912

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http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6333943&p_grant_num=1R01DK0596 42- 01&p_query=(Genome+%26+Scan+%26+Obesity+%26+Susceptibility+%26+Loci+%26+Samoa ns)&ticket=87770683&p_audit_session_id=403793949&p_audit_score=23&p_audit_numfound= 1&p_keywords=Genome+Scan+Obesity+Susceptibility+Loci+Samoans

HIV/AIDS Prevention Research in St. Croix, U.S.V.I.

Funded by the National Institute on Drug Abuse (NIDA), the goals of this study were to: a) Determine the nature and extent of HIV risk behaviors within populations of sexually active, drug and/or alcohol involved women and men in St Croix, U.S.V.I.; b) Develop and test the appropriateness and acceptability of culturally relevant HIV prevention/interventions for the target populations; and c) Explore the feasibility of QraSure HIV testing. The study: 1) collected baseline data on drug-using and sexual behaviors, HIV risk, and other life experiences from 100 women and 100 men who appear to be at high risk for HIV infection; 2) conducted focus groups with key informants in the health and human services fields as well as representatives of religious and police organizations and members of the target population to determine the supports, barriers, and impediments to safe sex, drug use, and HIV testing; 3) developed female-oriented and male- oriented HIV interventions based on input from the target populations; and 4) assessed the cultural appropriateness and suitability of the resulting interventions through focus groups with key informants and members of the target populations.

Additional information about this study can be found at:

PI: Hilary Surratt Email: [email protected] Institution: UNIVERSITY OF DELAWARE RESEARCH OFFICE NEWARK, DE 19716 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6589920&p_grant_num=1R21DA0150 17- 01A1&p_query=(HIV/AIDS+%26+Prevention+%26+Research+%26+St.+%26+Croix+%26+U.S .V.I.)&ticket=87770809&p_audit_session_id=403793949&p_audit_score=9&p_audit_numfound =1&p_keywords=HIV/AIDS+Prevention+Research+St.+Croix,+U.S.V.I.

Investigations of Osteoarthritis and Bone Loss

Funded by the National Institute on Aging (NIA), this study dealt with the epidemiological, genetic and longitudinal aspects of osteoarthritis and bone loss among: (1) the participants of the Baltimore Longitudinal Study; (2) a sample of normal Guamanians (Chamorras); (3) patients afflicted with amyotrophic Lateral Sclerosis/Parkinsonism Dementia Complex of Guam; and (4) Guamanian children ages 7-17 who lived on Guam during periods of severe nutritional deprivation.

Additional information about this study can be found at:

PI: C. Plato http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=4783649&p_grant_num=1Z01AG0000 22- 04&p_query=(investigations+%26+osteoarthritis+%26+bone+%26+loss)&ticket=87833722&p_a

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udit_session_id=403952329&p_audit_score=8&p_audit_numfound=1&p_keywords=investigatio ns+osteoarthritis+bone+loss

Linkage Study of Schizophrenia and P50 Gating Deficits

Funded by the National Institute on Mental Health (NIMH), this study tested the hypothesis that a major genetic locus underlies schizophrenia in a subgroup of families. It was carried out by: 1) Enlarging our sample of 17 current pedigrees to 25 moderately-sized, high density families to increase power to detect linkage; 2) Undertaking a two-pronged genotyping approach whereby the schizophrenic pedigrees were genotyped using a) polymorphic candidate genes implicated in the pathophysiology of schizophrenia; and b) a linkage map with simple sequence repeat (SSR) markers spaced at 5 centimorgan intervals; 3) Using the lod score method as well as the affected pedigree member method of linkage analysis; 4) Analyzing two neurophysiological variables, the P50 evoked auditory response and SPEM, in addition to analysis using the schizophrenia phenotype; 5) Conducting linkage analysis with brain cDNA's that contained highly informative polymorphic microsatellite sequences; 6) Conducting mutation scanning techniques in candidate genes that map to promising areas of linkage; and 7) Using the approaches described above to search for linkage in large pedigrees on the Micronesian island of Palau.

Additional information can be found at:

PI: William Byerley Institution: UNIVERSITY OF COLORADO DENVER GRANTS AND CONTRACTS, MAIL STOP F428 AURORA, CO 80045-0508 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=3759833&p_grant_num=2P50MH0442 12- 06A10002&p_query=(Linkage+%26+Study+%26+Schizophrenia+%26+P50+%26+Gating+%26 +Deficits)&ticket=87771005&p_audit_session_id=403793949&p_audit_score=4&p_audit_numf ound=6&p_keywords=Linkage+Study+Schizophrenia+P50+Gating+Deficits+

Mapping Genes for Schizophrenia in Founder Populations

Funded by the National Institute on Mental Health (NIMH), the long-term objectives of this study was the identification of genes contributing to schizophrenia susceptibility. The study sought to identify the genomic regions which may harbor such genes by performing linkage studies in genetically-isolated populations (populations that originated from a small number of founders and expanded in relative isolation). Data on families afflicted with schizophrenia from genetically isolated founder populations with accessible geneology that differ in their demographic characteristics (sample size, growth rate), as well as in their age of ancestry were collected from the island populations of Kosrae and Yap in Micronesia (genetic isolates of recent origin), and the Afrikaners in South Africa (genetic isolate of 'older' origin).

Additional information about this study can be found at:

PI: Maria Karayiorgou Email: [email protected] Institution: ROCKEFELLER UNIVERSITY NEW YORK, NY 10065-6399 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6088610&p_grant_num=1R01MH0613 99-

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01&p_query=(Mapping+%26+Genes+%26+Schizophrenia+%26+Founder+%26+Populations)&t icket=87771122&p_audit_session_id=403793949&p_audit_score=14&p_audit_numfound=9&p_ keywords=Mapping+Genes+Schizophrenia+Founder+Populations+

Modernization and Diabetes among Samoan Americans

Funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD), this study brought together a collaborative research team including anthropologists, public health specialists, health care personnel from Samoan communities, and others as necessary to forge a program to investigate factors contributing to the risk and complications of diabetes among modernizing Samoans. The three-fold approach of this study was to: 1) draw on already existing data sets for further analysis, including analyzing the 1988 Diabetes Registry for American Samoa, which was collected by the CI and PI in 1989, and the on-going Samoan Studies Project; 2) undertake a chart review at the LBJ Tropical Medical Center, American Samoa, and other clinic sources in Hawaii and California to estimate the prevalence of diabetes and diabetic complications and to describe the distribution of diabetes across the three communities of Samoan Americans; and 3) work with the collaborators from different Samoan communities to devise a follow-up research proposal responsive to the interests of these groups and which would yield culturally responsive approaches to prevention and control of diabetes.

Additional information about this study can be found at:

PI: James Bindon Institution: UNIVERSITY OF ALABAMA IN TUSCALOOSA BOX 870104 TUSCALOOSA, AL 35487 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=3443793&p_grant_num=1R21DK0451 96- 01&p_query=(Modernization+%26+Diabetes+%26+Samoan+%26+Americans)&ticket=8777123 3&p_audit_session_id=403793949&p_audit_score=14&p_audit_numfound=1&p_keywords=Mo dernization+Diabetes+Samoan+Americans

Molecular Genetic Study of Manic Depression and Schizophrenia

Funded by the National Center for Research Resources (NCRR), this study sought to identify genes that underlie susceptibility to manic-depressive illness (MDI) and schizophrenia (SCZ). Pedigree ascertainment continues in outbred populations from the United States, Palau, Micronesia, and Dagahestan, Russia. Sixteen multiplex MDI pedigrees and 20 multiplex pedigrees with SCZ have been ascertained from the Intermountain West, phenotyping has been completed, and over 500 cell lines and DNA stocks have been established. The objective in Palau was to ascertain all cases of schizophrenia and their relatives. Approximately 160 schizophrenics in the isolated population of Palau and Micronesia have been ascertained with DNA and cell lines collected from most. Almost all cases of SCZ in Palau have proven to be familial.

Additional information about this study can be found at:

PI: William Byerley Email: [email protected] Institution: UNIVERSITY OF UTAH 75 SOUTH 2000 EAST SALT LAKE CITY, UT 84112

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http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6218412&p_grant_num=3M01RR0000 64- 35S10503&p_query=(Molecular+%26+Genetic+%26+Study+%26+Manic+%26+Depression+% 26+Schizophrenia)&ticket=87771294&p_audit_session_id=403793949&p_audit_score=10&p_a udit_numfound=1&p_keywords=Molecular+Genetic+Study+Manic+Depression+Schizophrenia

Molecular Genetics of Schizophrenia

Funded by the National Institute on Mental Health (NIMH), this study identified the gene (or genes) predisposing to schizophrenia in the geographically-isolated population of Palau, Micronesia. Four large extended pedigrees containing 22, 16, 20, and 20 ascertained cases of schizophrenia were genotyped with the latest, high density Cooperative Human Linkage Center (CHLC) genome-wide screening set of DNA markers. Linkage analyses were subjected to linkage disequilibrium analyses using all available pedigrees, including simplex families.

Additional information about this study can be found at:

PI: William Byerley Email: [email protected] Institution: UNIVERSITY OF UTAH 75 SOUTH 2000 EAST SALT LAKE CITY, UT 84112 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=2416189&p_grant_num=5R01MH0560 98- 02&p_query=(molecular+%26+genetics+%26+schizophrenia+%26+palau+%26+micronesia)&ti cket=87845687&p_audit_session_id=404129746&p_audit_score=10&p_audit_numfound=1&p_ keywords=molecular+genetics+schizophrenia+palau+micronesia

MRI of Neurodegenerative Disease among Aging Chamorros

Funded by the National Institute on Aging, this study examined whether regional brain volume changes assessed with MRI volumetric can distinguish among, and predict, the major forms of dementia likely to affect Chamorro people. The study further examined whether rates of brain volume loss differ among cognitively intact subjects and PDC and MD patients and if the volume changes predict cognitive decline in Chamorros at high risk for dementia, those with mild cognitive impairment.

Additional information about this study can be found at:

PI: Jeffrey Kaye Email: [email protected] Institution: OREGON HEALTH AND SCIENCE UNIVERSITY 3181 SW SAM JACKSON PK RD PORTLAND, OR 97239-3098 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6481384&p_grant_num=2P01AG0143 82- 060008&p_query=(MRI+%26+Neurodegenerative+%26+Disease+%26+Aging+%26+Chamorro s)&ticket=87776367&p_audit_session_id=403952329&p_audit_score=15&p_audit_numfound=1 &p_keywords=MRI+Neurodegenerative+Disease+Aging+Chamorros

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Multiple-Cause Mortality among Aging Samoans

Funded by the National Institute on Aging (NIA), this study examined cause-specific mortality in American Samoa from 1900 to 1987, to determine how and when different causes contributed to the transition from infections to degenerative diseases as the primary cause of death. This analysis was based on death certificates, recorded while the islands of American Samoa were a protectorate of the United States, and census data from the United States decennial censuses of outlying territories.

Additional information about this study can be found at:

PI: Douglas Crews Email: [email protected] Institution: NORTHWESTERN UNIVERSITY 750 N. LAKE SHORE DRIVE, 7TH CHICAGO, IL 60611 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=3119998&p_grant_num=1R01AG0083 95- 01&p_query=(multiple+%26+cause+%26+mortality+%26+aging+%26+samoans)&ticket=87833 900&p_audit_session_id=403952329&p_audit_score=7&p_audit_numfound=1&p_keywords=m ultiple+cause+mortality+aging+samoans

Natural History of ALS-PD in Guam

Funded by National Institute of Neurological Disorders and Stroke (NINDS), this study was a continuation of previous projects on clinical, pathological, and epidemiologic surveillance of Guamanian amyotrophic lateral sclerosis (ALS) and Parkinsonism-dementia (PD) in the Marianas Islands. Identified survivors, including suspects, in the NINDS Registry as of January 1, 1983, were followed at intervals of six months by a qualified neurologist for detailed clinical descriptions of patterns of progression. The prevalence surveys of three southern Guamanian villages were completed in 1988 to determine the current prevalence of ALS/PDC. Simultaneously, other surveys were conducted for other major neurological diseases and for major diseases of aging populations.

Additional information about this study can be found at:

PI: L. Lavine http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=3881737&p_grant_num=1Z01NS00257 0-08&p_query=(Natural+%26+History+%26+ALS- PD+%26+Guam+%26+marianas)&ticket=87845816&p_audit_session_id=404129746&p_audit_ score=7&p_audit_numfound=1&p_keywords=Natural+History+ALS-PD+Guam+marianas

Neuropathologic Studies of Pre Clinical ALS/PDC

Funded by the National Institute on Aging, this project sought to: 1) recruit Chamorros aged 65 and older on Guam to support epidemiological and other studies; 2) screen subjects for cognitive, motor and functional abilities, and conduct clinical, neurological and neuropsychological assessments of participants who meet criteria for detailed evaluation in the proposed prevalence and incidence studies; 3) establish clinical diagnoses; 4) follow existing patients with ALS, PDC, and Marianas Dementia and evaluate and follow new patients with these disorders; 5) recruit subjects to undergo research MRI studies; 6) collect, store, and ship blood and CSF specimens; 7)

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obtain autopsy consent, and assist in brain autopsies and preparation of tissue, storage, and shipment; 8) data acquisition and management; 9) supervise staff and maintain quality assurance of procedures and data; 10) provide consultation for study participants and their families and caregivers; 11) liaison with health care providers and government agencies; and 12) carry out education and training.

Additional information about this project can be found at:

PI: Danial Perl Institution: UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DR, DEPT 0934 LA JOLLA, CA 92093-0934 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6234624&p_grant_num=1P01AG0143 82- 010003&p_query=(neuropathologic+%26+studies+%26+pre+%26+clinical+%26+als/pdc)&ticke t=87776904&p_audit_session_id=403952329&p_audit_score=8&p_audit_numfound=1&p_keyw ords=neuropathologic+studies+pre+clinical+als/pdc

Pacific Islander Cancer Control Network

Funded by the National Cancer Institute (NCI), this project established the Pacific Islander Cancer Control Network (PICCN) to improve cancer awareness, enhance recruitment to clinical trials, and increase the number of cancer control investigators among American Samoans, Native Hawaiians, Tongans, and Chamorros/Guamanians in the United States. The community-based organizations were located in California, Washington, Utah, Hawaii, American Samoa, and Guam--states and territories in which the large majority of Pacific Islanders reside.

Additional information about this project can be found at:

PI: Allan Hubbell Email: [email protected] Institution: UNIVERSITY OF CALIFORNIA IRVINE IRVINE, CA 92697-7600 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6129320&p_grant_num=1U01CA0860 73-01&p_query=&ticket=87711309&p_audit_session_id=403793949&p_keywords=

Hubbell, A.F., Luce, P.H., Afeaki, W.P., Cruz, L.C., McMullin, J.M., Mummert, A., Pouesi, J., Reyes, M.L., Taumoepeau, L.T., Tu'ufuli, G.M., Wenzel, L. Legacy of the Pacific Islander cancer control network. Cancer, 2006 Oct 15, 107(8 Suppl):2091-8.

PHFtau in Neurodegenerative Disease in Micronesia

Funded by the National Institute on Aging (NIA), this study examined the unusually high prevalence of neurodegenerative disorders similar to Alzheimer's disease (AD), Parkinson's disease (PD) and Amyotrophic Lateral Sclerosis (ALS) among Chamorros in the Mariana Islands. Despite similarities between these Chamorro diseases (known as Guam ALSIPDC) and AD, PD, or ALS elsewhere, the predominant findings in Guam ALS/PDC brains are abundant neurofibrillary tangles (NETs) like those in classic AD. The project assessed the biological significance of elevated levels of CSF tan, examined the role of PP2A in the pathogenesis of PHFtau and tangle formation, and characterized the molecular profile of tangle bearing versus normal neurons in the brains of patients with and without Guam ALS/PDC. These studies

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provided important insights into the pathogenesis of PHFtau in the hallmark lesions of Guam ALS/PDC, and clarified how these lesions led to neuron loss in Guam ALS/PDC.

Additional information about this study can be found at:

PI: Virginia Lee Email: [email protected] Institution: UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DR, DEPT 0934 LA JOLLA, CA 92093-0934 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6234625&p_grant_num=1P01AG0143 82- 010004&p_query=(phftau+%26+neurodegenerative+%26+disease+%26+micronesia)&ticket=87 777125&p_audit_session_id=403952329&p_audit_score=16&p_audit_numfound=1&p_keyword s=phftau+neurodegenerative+disease+micronesia

Pilot Study for the Women Physicians’ Health Study

Funded by the National Cancer Institute (NCI), this one-year pilot project was designed to plan a complex prospective epidemiologic investigation to study health outcomes among women physicians in the United States. The pilot study aims were: 1) obtain names, addresses, birth dates, and race for women physicians in the United States, Guam, Puerto Rico, and the Virgin Islands; 2) conduct one initial full mailing to a random sample of 10,000 of the approximately 122,000 women physicians inviting them to participate in the study; 3) estimate race and age- specific disease rates to determine how many years of follow-up will be needed for specific outcome events to be studied in order to identify risk factors for endpoints of interest; 4) pre-test the draft questionnaire in a sample of physicians who returned postcards indicating they would participate in the study; and 5) use information obtained from the pilot study in a proposal for a large prospective cohort study of health outcomes of more than 100,000 women physicians.

Additional information about this study can be found at:

PI: Elizabeth Holly Email: [email protected] Institution: UNIVERSITY OF CALIFORNIA SAN FRANCISCO 3333 CALIFORNIA ST., STE 315 SAN FRANCISCO, CA 94143-0962 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=2102571&p_grant_num=1R03CA0617 89- 01&p_query=(pilot+%26+study+%26+women+%26+physician%27s+%26+health+%26+study) &ticket=87777251&p_audit_session_id=403952329&p_audit_score=9&p_audit_numfound=3&p _keywords=pilot+study+women+physician%27s+health+study

Pilot—Evaluation of Risk Factors for Chronic Disease among Adults in Guam

Funded by the National Cancer Institute (NCI), this pilot project developed and evaluated instruments and methods for measuring dietary and anthropometric risk factors for chronic disease in Guam, with a particular focus on cancer risk. The specific goals were: 1) Develop the tools to accurately measure food and nutrient intakes, including a protocol for conducting 24-hour dietary recalls, a food composition database, a food grouping database, and a recipe file and conduct a small pilot study using the aforementioned methods; 2) Conduct a survey of a

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representative sample of 120 adult Filipinos and Chamorros living in Guam to evaluate dietary quality, physical activity levels, and body size and compare these findings to those from prior dietary surveys to estimate changes in dietary quality; and 3) Develop a food frequency questionnaire (FFQ) using data from the dietary recalls as an essential tool for measuring usual food and nutrient intake in future studies of diet and health.

Additional information about this project can be found at:

PI: Rachael Guerrero Institution: UNIVERSITY OF HAWAII AT MANOA 2530 DOLE STREET, SAK D-200 HONOLULU, HI 96822 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6822485&p_grant_num=1U56CA0962 54- 01A10002&p_query=(Pilot+%26+Evaluation+%26+Risk+%26+Factors+%26+Chronic+%26+Di sease+%26+Adults+%26+Guam)&ticket=87777387&p_audit_session_id=403952329&p_audit_s core=6&p_audit_numfound=1&p_keywords=Pilot+Evaluation+Risk+Factors+Chronic+Disease+ Adults+Guam

Prevalence/Incidence/Risk Factors for Dementia on Guam

Funded by the National Institute on Aging (NIA), this population-based study characterized the rates of dementia and PDC among Chamorros on Guam. The project aims were to: 1) Determine the prevalence of dementia ('pure' dementia, PDC, and other causes) among Chamorros on Guam aged 65 and older; 2) Determine the age- and sex-specific incidence of dementia among Chamorros on Guam; 3) Examine the effect of putative risk factors on the prevalence and incidence of dementia and PDC. Potential risk factors include environment (traditional Chamorro diet and lifestyle, sources of water), genetics (family history of ALS or PDC, ApoE e4 allele, tau polymorphisms and other candidate genes), risk factors for AD (education, head trauma, head circumference, and others), biological measures (plasma levels of F-2-isoprostanes; cholesterol levels); and 4) Characterize neuropathologic changes among elderly Chamorros who are cognitively normal and those who have clinical syndromes of dementia or AD. This project drew on the Clinical core on Guam, Neurologists and a neuropsychologist at UCSD and OHSU, a Neuropathology core at Mt Sinai Hospital, New York, and Neuroepidemiologists at University of South Florida.

Additional information about this study can be found at:

PI: Douglas Galasko Email: [email protected] Institution: UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DR, DEPT 0934 LA JOLLA, CA 92093-0934 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6738395&p_grant_num=5P01AG0143 82- 070007&p_query=(Prevalence/Incidence/Risk+%26+Factors+%26+Dementia+%26+Guam)&tic ket=87777905&p_audit_session_id=403952329&p_audit_score=6&p_audit_numfound=1&p_ke ywords=Prevalence/Incidence/Risk+Factors+Dementia+Guam

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Studies of Amyotrophic Lateral Sclerosis—Parkinsonic Dementia

Funded by the National Institute on Aging (NIA), this study was designed to: 1) Investigate the genetic and epidemiological factors contributing to the very high incidence of Amyotrophic Lateral Sclerosis and Parkinsonism Dementia (ALS/PD) on Guam; 2) Evaluate the distribution of the various established genetic and anthropological markers among the normal Guamanian population and compare them with those of the ALS/PD patients; and 3) Ascertain the effects of immobilization due to paralysis on bone density.

Additional information about this study can be found at:

PI: Chris Plato http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=4813574&p_grant_num=1Z01AG0000 28- 01&p_query=(studies+%26+amyotrophic+%26+lateral+%26+sclerosis+%26+parkinsonic+%26+ dementia)&ticket=87834038&p_audit_session_id=403952329&p_audit_score=9&p_audit_numf ound=5&p_keywords=studies+amyotrophic+lateral+sclerosis+parkinsonic+dementia

Study of Cancer Incidence in the South Pacific

Funded by the Division of Cancer Epidemiology and Genetics, this study: 1) obtained data coded and keypunched from abstracts on cancer cases diagnosed in Papua and New Guinea from 1958 onward, and in New Caledonia, New Hebrides, American Samoa, Western Samoa and French Polynesia beginning in 1978; 2) expanded and improved reporting of cancer cases to include Guam and the Trust Territories; and 3) began the processing of the data from Fiji. A tape containing these data was then be submitted to NCI for analysis.

Additional information about this study can be found at:

PI: Brian Henderson Institution: UNIVERSITY OF SOUTHERN CALIFORNIA DEPARTMENT OF CONTRACTS AND GRANTS LOS ANGELES, CA 90033 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=3979028&p_grant_num=1N01CP09102 7- 00079&p_query=(study+%26+cancer+%26+incidence+%26+south+%26+pacific)&ticket=87778 134&p_audit_session_id=403952329&p_audit_score=4&p_audit_numfound=11&p_keywords=s tudy+cancer+incidence+south+pacific

Suspected Influences on Methamphetamine Use

Funded by the National Institute on Drug Abuse (NIDA), this pilot project examined the growing use of methamphetamine in several regions of the United States and, in particular, the Territory of Guam. The study pilot tested methods for sampling community and clinically-ascertained methamphetamine users to set the stage for larger epidemiologic investigations. In addition, two classes of risk factors hypothesized to be associated with methamphetamine use was studied : 1) previous drug involvement under the hypothesis that a history of heavy alcohol and marijuana use will signal an increase in the risk for methamphetamine use; and 2) familial influences under the hypothesis that methamphetamine and other drug use is clustered within families and associated with a number of family characteristics, including loss of cultural identity. Lastly, the project

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studied the suspected transition from ice smoking to injecting methamphetamine, gathering evidence from both the clinical sample of cases and the epidemiologic sample.

Additional information about this study can be found at:

PI: Amelia Arria Email: [email protected] Institution: JOHNS HOPKINS UNIVERSITY W400 WYMAN PARK BUILDING BALTIMORE, MD 21218-2680 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=2639704&p_grant_num=1R03DA0116 39- 01&p_query=(suspected+%26+influences+%26+methamphetamine+%26+use)&ticket=8777827 3&p_audit_session_id=403952329&p_audit_score=17&p_audit_numfound=1&p_keywords=sus pected+influences+methamphetamine+use

Virgin Islands Export Center for Health Disparities

Funded by the National Center for Minority Health and Health Disparities (NCMHD), this project sought to develop the resources and infrastructure needed to expand research capacity in education and health to support interdisciplinary projects to reduce disparities in health status in the U.S. Virgin Islands (St. Thomas, St. Croix, and St. John). This project is located at the University of the Virgin Islands within the Division of Nursing.

Additional information about the center can be found at:

PI: Gloria Callwood Email: [email protected] Institution: UNIVERSITY OF THE VIRGIN ISLANDS 2 JOHN BREWER'S BAY ST. THOMAS, VI 00802 http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=6888442&p_grant_num=1R24MD0011 23- 01&p_query=(Virgin+%26+Islands+%26+Export+%26+Center+%26+Health+%26+Disparities) &ticket=87778374&p_audit_session_id=403952329&p_audit_score=22&p_audit_numfound=1& p_keywords=Virgin+Islands+Export+Center+Health+Disparities+

WHO Collaborating Center—Epidemiological & Clinical Investigations in Diabetes

This project was funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD). Since 1986 the Phoenix Epidemiology and Clinical Research Branch has been designated as the World Health Organization (WHO) collaborating Center for Design, Methodology and Analysis of Epidemiological and Clinical Investigations in Diabetes. The purposes of the Center were to collaborate with WHO to implement the WHO/International Diabetes Federation action program on diabetes and to provide advice, consultation and collaboration with other investigators in the design, methodology and analysis of epidemiological and clinical studies of Type 2 diabetes and its complications. It has also: 1) Assisted in the development and application of standardized methods for epidemiological and clinical investigation and data analysis relating to the etiology and pathogenesis of Type 2 diabetes and its complications; 2) Advised in the design of new studies and provided on-site assistance when necessary; 3) Trained investigators from many parts of the world in diabetes epidemiology and

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clinical research.; 3) Participated in the International Diabetes Federation (IDF) Expert Committee on IFG and IGT and in the WHO consultation group recommending methods for the diagnosis and classification of complications of diabetes; and 4) Provided advice and recommendations on the epidemic of diabetic renal disease in Guam and Saipan.

Additional information about this project can be found at:

PI: Peter Bennett http://crisp.cit.nih.gov/crisp/CRISP_LIB.getdoc?textkey=3876483&p_grant_num=1Z01DK0690 24- 04&p_query=(collaborating+%26+center+%26+epidemiological+%26+clinical+%26+investigati ons+%26+diabetes)&ticket=87778497&p_audit_session_id=403952329&p_audit_score=23&p_a udit_numfound=1&p_keywords=collaborating+center+epidemiological+clinical+investigations+ diabetes

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8. Other Reports

Listing of useful reports on health and healthcare in the U.S. Territories and Freely Associated States are presented:

1. Centers for Disease Control and Prevention. (2001). Morbidity and Mortality Weekly Report (MMWR). Vitamin A Deficiency Among Children—Federated States of Micronesia, 2000; Vol. 50:24

2. The DASIS Report: Asian and Pacific Islander Adolescents in Substance Abuse Treatment: 1999. Published July 2002. SAMSHA: Rockville, MD. http://www.oas.samhsa.gov/2k2/AsianTX/AsianTX.cfm.

3. The DASIS Report: Asians and Pacific Islanders in Substance Abuse Treatment: 1999. Published August 2002. SAMSHA: Rockville, MD. http://www.oas.samhsa.gov/2k2/AsiansallTX/AsiansallTX.cfm.

4. The DASIS Report: Substance Abuse Treatment Admissions among Asians and Pacific Islanders: 2002. Published July 2005. SAMSHA: Rockville, MD. http://www.oas.samhsa.gov/2k5/AsianTX/AsianTX.htm.

5. Future of Health Care In the Insular Areas Leaders Summit. 2008. U.S. Department of the Interior. Washington, DC. http://usasearch.gov/search?v%3aproject=firstgov&v%3afile=viv_1074%4019%3aAMaDSS&v%3astate=r oot%7croot&opener=full- window&url=http%3a%2f%2fwww.doi.gov%2foia%2fFirstpginfo%2fhealth_summit%2fdocuments%2fEn tire%2520Report_Insular%2520Area%2520Health%2520Summit%2520Report.pdf&rid=Ndoc50&v%3afr ame=redirect&rsource=firstgov- msn&v%3astate=%28root%29%7croot&rrank=0&h=7f3513a46dbbc25a2cc246c6ff1e0ec7&.

6. Healthy Yap 2000: A Priority-Based Health Plan 1996-2001. Yap State Department of Health Services. Prepared by Dr. Mark Durand, Director, Yap State Department of Health Services and staff.

7. The Ministry of Health and Environment Primary Health Care Annual Report Division of Outer Island Health Care.

8. Monthly Morbidity Report (Only Reportable Diseases with New Cases. Yap State Department of Health Services. Prepared by Dr. Mark Durand, Director, Yap State Department of Health Services.

9. The NSDUH Report: Past Month Cigarette Use among Racial and Ethnic Groups. 2006. SAMSHA: Rockville, MD. http://www.oas.samhsa.gov/2k6/raceCigs/raceCigs.cfm.

10. PIHOA Strategic Plan 2005-2009. Plan adopted September 2004. Honolulu, HI. http://www.pihoa.org/[email protected].

11. Republic of the Marshall Islands Ministry of Health Annual Report. 2004. http://www.rmiembassyus.org/Health/RMI%20MOH%20Annual%20Report%20FY%202004.pdf.

12. Republic of the Marshall Islands Ministry of Health Annual Report. 2003. http://www.rmiembassyus.org/Health/RMI%20MOH%20Annual%20Report%20FY%202003.pdf.

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13. Republic of the Marshall Islands Ministry of Health Annual Report. 2002. http://www.rmiembassyus.org/Health/RMI%20MOH%20Annual%20Report%20FY%202002.pdf.

14. Secretariat of the Pacific Community Annual Report 2007, Parts 1 & 2. Report published 2008. Written by Smaalder, M. and SPC Staff. SPC Headquarters: Noumea, New Caledonia. Part 1: http://www.spc.int/corp/index.php?option=com_docman&task=doc_download&gid=149&Itemid=79. Part 2: http://www.spc.int/corp/index.php?option=com_docman&task=doc_download&gid=204&Itemid=79.

15. SPC Thirty-Eighth Meeting of the Committee of Representatives of Governments and Administrations: Paper 3-6 Public Health – Challenges and Directions. October 2008. Paper presented by the Secretariat. Noumea, New Caledonia. http://www.spc.int/corp/index.php?option=com_docman&task=doc_download&gid=178&Itemid=79.

16. SPC TB Statistics Proforma Report (Summary of leprosy incidence in Yap, total new and old casesof leprosy by gender, for children <14, PB by gender, MB by gender, total by gender, total number screened, leprosy drug supply for child and adults, expiration of leprosy drug, newly received leprosy drug.)

17. SPC Thirty-Seventh Meeting of the Committee of Representatives of Governments and Administrations: Paper 3-5 Public Health – Challenges and Directions. November 2007. Paper presented by the Secretariat. Apia, Samoa. http://www.spc.int/corp/index.php?option=com_docman&task=doc_download&gid=69&Itemid=79.

18. The World Health Report 2008: Primary Health Care Now More Than Ever. 2008. World Health Organization. Geneva, Switzerland.

19. The Division of Behavioral Health, 2006 Annual Report, Koror, Palau.

20. The Ministry of Health and Environment Primary Health Care Annual Report Division of Outer Island Health Care. Prepared by Dr. Mark Durand, Director, Yap State Department of Health Services. (Summary of total number of visits to Health Centers by age and gender, total births and deaths, maternal and child deaths, medical consultations by radio and number of referrals, well baby clinic attendance, common diseases encountered in Outer Island Health Centers, Diabetes summary (attendance & screening), hypertension summary (attendance and reason for screening, diabetes cases seen by medication and age, hypertension cases seen by status and age, hypertension clinic results, causes of hypertension, default action, follow-up action, infectious and contagious diseases, vaccine preventable diseases, tuberculosis status, leprosy, immunization for children and adults, human services, reproductive health, family planning for males and females, family planning defaulters, method and reason for discontinuing contraceptive use, maternal and child health, vital events, teen pregnancies, prenatal details, pre and post natal dietary supplements, overweight/obesity, health promotion and education, dental services, staff training.)

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Allen, J.S., J.L. Laycock. (1997). Major Mental Illness in the Pacific: A Review. Pacific Health Dialog; Vol.4, No. 2.

Burchard, E. G., Ziv, E., Coyle, N., Gomez, S. L., Tang, H., Karter, A. J., et al. (2003). The Importance of Race and Ethnic Background in Biomedical Research and Clinical Practice. N Engl J Med, 348(12), 1170-1175. doi: 10.1056/NEJMsb025007.

Burke, W. (2002). Genetic Testing. N Engl J Med, 347(23), 1867-1875. doi: 10.1056/NEJMoa012113.

Sayers, M. D., Bellack, A. S., Wade, J. H., Bennett, M. E., & Fong, P. (1995). An Empirical Method for Assessing Social Problem Solving in Schizophrenia. Behav Modif, 19(3), 267-289. doi: 10.1177/01454455950193001.

1995 Summary Report: U.S. Virgin Islands Behavioral Risk Factor Survey. 1997. U.S. Virgin Islands Department of Health Chronic Disease Prevention Program Department of Health: St. Croix, Virgin Islands. http://apps.nccd.cdc.gov/Publications/resultV.asp?Open=&Year=-1&State=59&Topic=- 1&Division=1&Start=0&Expand=184&X=0#184

Shmulewitz, D., Auerbach, S. B., Lehner, T., Blundell, M. L., Winick, J. D., Youngman, L. D., et al. (2001). Epidemiology and factor analysis of obesity, type II diabetes, hypertension, and dyslipidemia (syndrome X) on the Island of Kosrae, Federated States of Micronesia. Human Heredity, 51(1-2), 8-19.

Vogt, T. M., Goldstein, S. T., & Kuartei, S. (2006). Endemic hepatitis B virus infection and chronic liver disease mortality in the Republic of Palau, 1990-2002. Transactions of the Royal Society of Tropical Medicine and Hygiene, 100(12), 1130-1134. doi: 10.1016/j.trstmh.2006.01.011.

Eke, P. I., Timothé, P., Presson, S. M., & Malvitz, D. M. (2005). Dental Care Use Among Pregnant Women in the United States Reported in 1999 and 2002. Preventing chronic disease [electronic resource]., 2(1), A10.

Maga, A., Courten, M., Dan, L., Uele, F., Macdonald, N., Lili’o, L., et al. (2007). American Samoa NCD Risk Factors STEPS Report. A collaborative effort between the American Samoa Department of Health, the WHO, and Monash University, Australia. http://www.who.int/chp/steps/Printed_STEPS_Report_American_Samoa.pdf

Centers for Disease Control. Palau Youth Tobacco Survey 2001.

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http://www.who.int/tobacco/surveillance/Palau%202001%20YTS%20-%20Final%20Report.pdf

Lippe, J., Brener, N., Kann, L., Kinchen, S., Harris, W., McManus, T., & Speicher, N. (2008). Youth Risk Behavior Surveillance – Pacific Island United States Territories, 2007. Centers for Disease Control. http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5712a2.htm

Tseng, C., Omphroy, G., Cruz, L., Naval, C. L., & Haddock, R. L. (2004). Cancer in the Territory of Guam. Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 11(2), 57-63.

Englberger, L., Marks, G. C., & Fitzgerald, M. H. (2003). Insights on Food and Nutrition in the Federated States of Micronesia: A Review of the Literature. Public Health Nutrition, 6(01), 5-17. doi: 10.1079/PHN2002364.

1992 Census of Agriculture, Vol 1: Geographic Area Series, Part 54: Virgin Islands of the United States. March, 1995. U.S. Department of Commerce, Economics and Statistics Administration, Bureau of the Census. http://www.nass.usda.gov/census/census92/outlying/vi-54.pdf

A Report on the State of the Islands: Chapter 5: Virgin Islands. U.S. Department of the Interior, Office of Insular Affairs. http://www.doi.gov/oia/StateIsland/chapter5.html

Additional reports can be found at the following websites:

PIHOA: http://www.pihoa.org/documents.html

WHO Regional Office for the Western Pacific: http://www.wpro.who.int/publications/publications.htm

SPC: http://www.spc.int/corp/index.php?option=com_docman&Itemid=79

SAMSHA: http://www.oas.samhsa.gov/race.htm#Asians

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9. Vital Statistics System in the U.S. Territories

This section was prepared by Delton Atkinson and Dr. James Weed of the Division of the Vital Statistics, National Center for Health Statistics Centers for Disease Control and Prevention and presents vital statistics for the four U.S. Territories. This task was made possible through NCHS role in collecting, processing and disseminating vital event data on the U.S. Territories. The chapter itself provides two independent benefits, first it offers a detailed overview of the vital events that impact the U.S. Territories and provides useful measures of mortality, fertility and how these factors can be associated with the overall health of an area. The second benefit is that it reflects the valuable information that could be produced for all the insular areas if existing vital registration systems are standardized and if this information is made available for analysis and reporting purposes.

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Introduction

The decentralized vital statistics system1 has long been recognized as an essential component of the U.S. Public Health System. It has been the primary source of information to assess and track overall population health; to plan, implement, and evaluate health and social services for children, families, and adults; and to set health policy at the national, state and even the local levels. Vital statistics data on access to prenatal care, maternal risk factors, infant mortality, cause of death, life expectancy and other pregnancy and mortality indicators have been the foundation of public policy and programmatic debates about improving overall health status and health service delivery. This system has provided the most complete and continuous data available to public health and other officials at the federal, state and local levels, and consequently is considered to be the pillar for all public health data systems.

Within the four U.S. territories--American Samoa, Guam, Northern Marianas, and the U.S. Virgin Islands--this pillar of public health is fragile. Although able to issue birth and death certificates for legal and administrative purposes, the vital statistics systems in the islands have not been on-going sources of timely, high quality health information about the Islanders. As a part of the larger Department of Interior (DOI) Project on the Assessment of Health Data Systems, the National Center for Health Statistics (NCHS) undertook a special assessment of the “health” of the vital statistics systems in American Samoa, Guam, the Commonwealth of the Northern Marianas, and the U.S. Virgin Islands. The results of this assessment are summarized in this report along with recommendations for enhancement.

Assessment of the Vital Statistics Systems

Process

In 2006, NCHS received a contract from the DOI to conduct an assessment of the health data systems in the insular areas of the United States--the Virgin Islands, Guam, American Samoa, and the Commonwealth of the Northern Mariana Islands (CNMI)--as well as three jurisdictions maintaining Compacts of Free Association with the United States: Palau, the Federated States of Micronesia, and the Republic of the Marshall Islands. As a component of this project, NCHS undertook a special review of the vital statistics systems in the insular areas of the United States,2 each of which is a participant in the NCHS Vital Statistics Cooperative Program (VSCP).3 In conducting these assessments, a series of on-site, individual interviews

1 For purposes of this report, the vital statistics system is defined as consisting of two components-- records and statistics. The records component involves collecting, processing, amending, archiving and issuing birth, death and fetal death records according to state and territorial laws and regulations. The statistics component involves the analysis and dissemination of birth, death and fetal death data and assistance to others in the use of that data for policy, program management, and research. 2 On-site interviews were conducted in American Samoa, Guam and Northern Marianas during the entire month of February 2007 and in the U.S. Virgin Islands (specifically St. Thomas and St. Croix) in the last two weeks of September 2007.

3 According to a March 2007 communication from the Data Acquisition and Evaluation Branch in the CDC/NCHS Division of Vital Statistics, the Division has been working with American Samoa, Guam and Northern Marianas since 2000 to move them formally into the VSCP, whereby annual funding for each state and territory is based on an agreed upon formula. To become a full VSCP participant, these three areas would need to commit to meeting all of 9-2

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(approximately 2 to 3 hours in duration) were conducted with gubernatorial, public health, and academic officials about the vital statistics and other health data systems in the four U.S. territories. The interviewees were quite candid about their cultural traditions and practices and about the strengths and weaknesses of their public health programs and the associated data systems. From these interviews, four factors were used to assess the “health” of the islands’ vital statistics programs: 1) ability to collect and issue birth, death, and fetal death certificates timely and securely; 2) ability to process records efficiently using national edits; 3) ability to analyze the records and publish/disseminate the resulting analyses; and 4) ability to work with other programs in the use of the vital statistics data for policy and/or program management.

Findings

While each of the four territories was able to collect and issue birth and death certificates, none demonstrated a timely, high quality and well-used (hereafter characterized collectively as “well-functioning”) vital statistics system. Leading officials in these territories recognized the value and importance of a well-functioning vital statistics system in both understanding the health of their residents and developing and implementing programs to address the identified problems. They considered this system to be a priority data system because it gave them the ability not only to better count the number of birth and death events, but also to assess health status, trends, and delivery systems across the mix of population groups that predominate on their islands.

At the same time, they were cognizant of the underlying limitations of their systems but less conversant about how best to minimize those limitations. The islands’ vital statistics systems generally lacked the capacity to process and systematically edit the records efficiently, lacked quality control procedures between the hospital and the vital records office, and had limited-to- no capacity to analyze or disseminate birth, death and fetal death data. Three of the four territories had neither produced nor disseminated basic vital statistics in at least the prior five years, while in the fourth territory only sporadic data tabulations had been produced. This latter limitation (i.e., the inability to obtain data) was of the most concern as expressed by the leaders and their staffs.

The mix of factors causing the limitations varied by territory, but can be categorized into one or more of four groupings: organizational placement of the records and the statistics components of the vital statistics program, combined with limited communications between the two components; lack of appropriate staffing resources or funding for both components of the vital statistics program, especially statistical staff to analyze the data; inadequate infrastructure including building and computer hardware/software to operate a vital statistics program; and/or outdated laws and policies governing the vital statistics program.

the requirements documented within the statement of work of the VSCP agreement. The most significant of these requirements would be transmitting their records in the standard NCHS file format and detail, adhering to the timeliness requirements for submitting files, and improving the quality of their data. The lack of funding within these respective territories has precluded them from meeting the requirements of the national VSCP contract, and, thus, becoming a full VSCP participant. 9-3

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Of the four territories, the most inefficient vital statistics system was in American Samoa. The records component of the vital statistics program (i.e., the Office of Vital Records) was housed within the Department of Homeland Security while the statistical component (i.e., the Office of Health Information Systems) was housed in the Department of Public Health, with an inefficient working relationship between the two offices. This organizational separation had led to the creation of a fractured vital statistics system with significant timeliness, quality and data content limitations. For instance, in observing their operations, the Office of Vital Records staff collected no health and medical information in the registration of the birth and death certificates, the only state or territory in the U.S. not to do so. Staff of the single hospital in American Samoa completed the legal part of the certificates and submitted them to the Office of Vital Records for registration. The hospital retained a copy for the Health Information Systems staff to use in abstracting any needed medical information on the birth certificate from the hospital’s medical records. All three staffs used manual processes and identified the problems of missing cases, missing data, and inadequate data quality as major issues. Neither Vital Records nor Health Information Systems had any electronic infrastructure for the collection, processing, issuance, and archival functions associated with the vital statistics system; thus, no systematic record editing using the NCHS edits was occurring locally. Further, neither had the capacity for ongoing, systematic analysis of the data, only tabulations of the data.

Even more problematic than the organizational separation was the lack of legislative clarity governing the vital statistics program in American Samoa. Laws pertaining to vital records were first enacted in 1961 and revised once in 1973, but no legislative laws (only a Governor’s memo---Memo #99-1542) existed governing the collection, analysis and dissemination of vital statistics data to meet the needs of policy and program managers. Further, no laws existed on the protection of the confidentiality of information if analyses were undertaken. While both staffs considered helpful the Governor’s memo authorizing the statistical component of the vital statistics program, clearly defined and updated laws and policies governing the entire vital statistics system were felt to be necessary to have a well-functioning program in American Samoa. This governance structure has been one factor in the lack of progress with the vital statistics system in American Samoa, resulting in it being the only state or U.S. territory in the nation using the 1978 versions of U.S. standard certificates.4

In the other three territories, the defining limitations were more resource oriented than either political or organizational. Although both the records and the statistical components of the Guam vital statistics program were housed in the Department of Public Health (DPH), this program exhibited significant difficulties in efficiently executing the basic vital records functions of collecting, registering, issuing, and archiving certificates. Guam had no electronic infrastructure for transmitting birth, death, and fetal death records from the two island hospitals to the vital records office (a function highly desired by the local non-military hospital), for issuing certificates to the general public, or for archiving old records. Periodically, staffs from

4 In 2002, the U.S. Department of Health and Human Services released the 2003 version of the U.S. standard certificates for states and territories to implement. As of 2010, 36 of the 57 registration jurisdictions have begun using the 2003 standard birth certificate; 34 have begun using the 2003 standard death certificate; and 27 have begun using the 2003 standard report of fetal death. The implementation delay in most jurisdictions has been due to the cost and/or complexity of re-engineering their IT systems to accommodate the new national standards. Guam, Northern Marianas and U.S. Virgin Islands, all of which have no IT system to re-engineer, were using the 1989 version of these certificates while American Samoa was using the 1978 version. 9-4

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other parts of DPH have assisted this Office in meeting the basic records functions. Further, it had no current capacity to either analyze and disseminate the vital statistics data or assist public health and other professionals in the use of that data. Guam had not published any data using the birth, death and fetal death records since the 1996 data year, a fact about which interviewees expressed significant distress. Without interventions, Guam’s prospects of improving its vital statistics system in the immediate future are at best slim because of the: 1) impending relocation of over 8,000 U.S. military personnel and their families to Guam, placing even greater strain on the Office of Vital Statistics to deliver basic record services; 2) continual across-the-board cuts in the budgets being experienced by the DPH and other governmental agencies; 3) recent transfer of the issuance of marriage certificates from the Office of the Courts to the Office of Vital Statistics without any additional resources; and 4) ever expanding volume of requests for verification of birth certificates from federal and territorial agencies.

Similar to American Samoa, organizational and communication problems and resource limitations have also existed in the Northern Mariana Islands (CNMI), significantly hampering both the availability and quality of its vital statistics data.5 Unlike American Samoa, however, CNMI somehow managed to deal with its organizational issues, providing hope for an improved vital statistics system. Through the concerted leadership of the Department of Public Health (DPH), the CNMI Legislature transferred the Vital Records Program from the Office of the Courts to the DPH in late 2007, whereby the records function was merged with the fledgling Office of Vital Statistics. In obtaining this legislative approval, DPH re-wrote and updated its outdated vital statistics laws and associated regulations, using the NCHS Model State Vital Statistics Act and Regulations6 as a guide. With the legal underpinning for a well-functioning vital statistics program in place, CNMI’s challenge now becomes actually creating a new, functioning Office of Vital Records/Statistics within the DPH that can meet the national expectations of a vital statistics program. Limited resources and limited registration experiences7 will be major problems confronting them. As with other territories, significant improvements are not likely to happen unless some outside resources are provided.

Finally, as with CNMI, the U.S. Virgin Islands (VI) provided a ray of optimism for enhancing the vital statistics system. VI has shortcomings similar to those of the other three territories--no electronic infrastructure to collect the vital records information from the hospitals; limited quality control procedures between the hospital and the vital records office; the inability to efficiently process and issue the records once they receive them; the inability to use national NCHS edits systematically to improve the quality of the data; and no capacity to analyze and disseminate the data or work with the programs and other decision-makers in the use of the data.

5 Budget shortfalls/limitations were continual problems in CNMI. During the visit to CNMI in February 2007, the Governor had already declared every other Friday as an “austerity day.” This meant that all CNMI governmental workers had to take the day off without pay, which significantly affected the ability of public health programs to deliver services. It was expected that “austerity days” would continue for the foreseeable future.

6 The 1992 revision.

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Despite these problems, three factors stand out that warrant this optimism. First, the gubernatorial staff and the new Health Commissioner, who had been in place for only 90 days at the time of the interview, articulated a clear vision about the role and importance of data. Improving their health data systems, particularly the vital statistics system, was a priority in their administrations. Each saw well-functioning data systems as essential tools in their fight to improve the health status and the health services delivery system for the Islanders. They emphatically expressed this vision in their interviews, much more so than the leaders in the other three islands. Both the Governor’s staff and the Health Commissioner individually expressed hope that some type of health statistics improvement project for the islands would be one outcome of this DOI assessment initiative.

The second factor was the expanding association between the VI government and the University of Virgin Islands (UVI)--a key academic resource for the islands. VI has begun to build a data system partnership with UVI, with the latter already designated as the home for the demographic and census-related information for the islands. These two entities are discussing forging a new working relationship for improving economic data and, from the interviews with the staff in the VI Department of Public Health, building partnership opportunities for health data systems. This type of government-to-academia relationship was not specifically mentioned on the other three islands, but where the opportunity exists, it could be a key element in achieving a territory’s desire to enhance its vital statistics and other public health data systems.

A third and final factor for this optimism was the potential for leveraging existing public health and other programs to improve statistical capacity. Within many states, it is a common practice for public health and other programs to assist in financing centralized statistical capacities for the betterment of public health. Where this practice exists, strong leadership from the health officer is necessary to make it a reality. VI was the only territory where the Health Commissioner openly discussed this concept as one potential strategy to assist in strengthening the statistical capacity of the DPH. Moreover, even some of the program managers expressed support of this concept if their statistical needs could be met and assured over time.

For VI to translate this optimism into enhanced vital statistics and other data systems, its ability to secure the necessary resources to build or strengthen cross-program collaborations using vital statistics and other health data systems and to foster cross-agency program funding of statistical capacity will be paramount. As with the other territories, outside assistance will be necessary to achieve these outcomes.

Vital Statistics Trends and Differentials

Methods

This section presents trends and differentials in selected vital statistics indicators for four of the five U.S. territories: Guam, American Samoa, the Commonwealth of the Northern Mariana Islands, and the Virgin Islands. Also included for comparison purposes are data for the fifth U.S. territory (Puerto Rico), three States (Hawaii, California, and Washington), and the

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total United States (excluding the territories). The data presented in this section have been gathered from the National Center for Health Statistics (NCHS) in annual issues of Final Data for Births and Deaths in the National Vital Statistics Reports (Advance Reports of Final Natality and Mortality Statistics in Monthly Vital Statistics Reports until 1996). The Technical Notes in each issue provide additional details on sources and characteristics of the data. NCHS receives no data from the freely associated states of Palau, the Federated States of Micronesia, and the Republic of the Marshall Islands. For copies of reports, see http://www.cdc.gov/nchs/products/pubs/pubd/nvsr/nvsr.htm and http://www.cdc.gov/nchs/products/pubs/pubd/mvsr/mvsr.htm.

Vital statistics for both births and deaths were first published by the U.S. Bureau of the Census in 1925 for the Virgin Islands and in 1932 for Puerto Rico; except for occasional periods of omission, NCHS has continued to publish annual data for both of these territories. Vital statistics for Guam were published for the first time in the 1970 edition of Vital Statistics of the United States (VSUS). NCHS first published vital statistics for American Samoa in 1997 and for the Northern Marianas in 1998. See http://www.cdc.gov/nchs/products/pubs/pubd/vsus/vsus.htm for pdf files of available volumes of VSUS.

Traditionally, NCHS and its predecessor federal statistical agencies have received paper copies of birth and death certificates from the territories (as they once did from the states as well) and have coded and classified the data for publication. This is still the case with all data on Guam's birth and death certificates. In recent years, American Samoa and the Northern Marianas have sent NCHS electronic spreadsheets (or databases) containing all information reported on birth certificates and all demographic information reported on death certificates; NCHS then converts this information to the standard NCHS code structure for these items. Literal cause-of- death entries are included in the Northern Marianas' spreadsheet and are converted by NCHS for entry into the SuperMICAR data entry module of the NCHS Mortality Medical Data System (MMDS). NCHS enters and codes the cause-of-death information from copies of death certificates for American Samoa. The Virgin Islands sends NCHS electronic files with data in NCHS standard format for all variables except cause-of-death data, which NCHS codes from paper copies. Puerto Rico also sends NCHS electronic files in NCHS format, including cause- of-death information entered into the SuperMICAR data entry module. For a description of the NCHS MMDS, see http://www.cdc.gov/nchs/about/major/dvs/medsof.htm.

Table 9.1 provides an overview of final birth and death totals for the five U.S. territories, plus Hawaii and the total United States, for 1996-2005. These are the basic data that have been used (with the population data described below) to calculate birth and death rates for presentation in subsequent Tables 9.2-9.3 and 9.11-9.12, respectively. Data for the entire United States refer to events occurring within the United States and exclude births to and deaths of nonresidents of the United States. Natality and mortality statistics for Puerto Rico, the Virgin Islands, American Samoa, and the Northern Marianas exclude births to and deaths of nonresidents of those jurisdictions. For Guam, however, natality and mortality statistics exclude births and deaths that occurred to residents of any place other than Guam or the United States.

Included in Table 9.1 are the total annual populations, estimated as of July 1, for the five U.S. territories, Hawaii, and the total United States. The U.S. Bureau of the Census provided

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these population postcensal estimates to NCHS for calculating birth and death rates. Population estimates based on the 1990 census are shown for 1996-2001 and on the 2000 census for 2000- 2005, so that two figures are shown for 2000 and 2001. Populations used for computing birth and fertility rates for 1994-2001 and 2002-2005 are estimates based on the 1990 and 2000 censuses, respectively. Populations used for computing death rates for 1994-2000 and 2001- 2004 are estimates based on the 1990 and 2000 censuses, respectively. These facts should be kept in mind when viewing trends in birth and death rates for the territories, particularly American Samoa and the Virgin Islands which had 12 percent and 10 percent reductions, respectively, between their July 1, 2000 population estimates based on the 1990 censuses and estimates based on the 2000 censuses.

Natality Statistics

The natality data provided to NCHS show considerable variation in fertility among the five U.S. territories. Tables 9.2 and 9.3 show the crude birth rate, general fertility rate, and total fertility rate (TFR) for the territories, plus three states and the total United States. Of these measures, the TFR is the best measure to use in comparing populations across time or among geographic areas because it is computed from age-specific birth rates (usually in 5-year age intervals) and hence is age-adjusted.

The TFR summarizes the potential impact of current fertility patterns on completed family size. The TFR estimates the number of births that a hypothetical cohort of 1,000 women would have if they experienced throughout their childbearing years the same age-specific birth rates observed in a given year. The rate can be expressed as the average number of children that would be born per woman. Differences among groups are made apparent when their rates are compared with a "replacement" rate. A replacement rate is the rate at which a given generation can exactly replace itself, generally considered to be 2,100 births per 1,000 women. The TFR for the United States has been at or below replacement since 1972.

The birth and fertility rates in Tables 9.2 and 9.3 indicate the existence of rather different fertility patterns and trends in the five territories, but one must be very cautious in interpreting the data. Consider first the Virgin Islands and Puerto Rico, both of which experienced significant decreases in the number of births from 1994 to 2005. This is reflected in a declining TFR for Puerto Rico but not for the Virgin Islands. By way of interpretation, note in Table 9.1 that Puerto Rico's population estimates had a minor drop of 2 percent between 2001 (based on 1990 census) and 2002 (based on 2000 census), while Virgin Islands had an 11 percent drop. In Puerto Rico the birth decline after 2000 is reflected consistently in the TFR and lower teenage birth rates. A different pattern appears for the Virgin Islands, where both the TFR and the birth rate for women 18-19 years increased significantly after 2001, but declined for teenagers 15-17 years, probably reflecting a shift in the age-distribution of the population as estimated by the Census Bureau using the 2000 census.

Guam and American Samoa have had much the highest TFR's among the five territories, although Guam's TFR has shown a very rapid drop, falling from about 4,000 in 1996-1997 to 2,576 in 2005. A strong component of this decline has been the nearly fifty percent drop in the teenage birth rate (Table 9.2) over that 10-year time period, from 116.8 to 59.2 births per 1,000

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teenagers aged 15-19. In comparison, the TFR and teenage birth rates for American Samoa have been very stable, fluctuating around 3,749 and 42.0, respectively. Nevertheless, the Guam teenage birth rate remains much higher than that for American Samoa. Depending on findings from a more detailed quality analysis of birth and population figures, present evidence indicates different fertility patterns in these two territories.

An interesting case is presented by the Northern Marianas, which has an exceptionally low TFR—well below replacement—but has teenage (15-19 years) birth rates that are in line with those of American Samoa, which has a relatively high TFR. Nevertheless, according to NCHS' received data, the Northern Marianas' teenage birth rates have declined by more than 50 percent between 1998 and 2005, with only a minimal decline in the total number of births. The evidence suggests a rapid and radical shift in the age distribution of childbearing in the Northern Marianas, a feature of the population that calls for further in-depth analysis.

The questions of interest regarding the Northern Marianas do not end there. Posted at the bottom of the top two blocks in Table 9.1 are the averages of the annual birth and death totals for each geographic area, and the line indicated by Ratio B/D shows the ratio of the birth average to the death average. Note that the ratios for Hawaii (2.2) and Puerto Rico (2.0) are just slightly greater than that for the total United States (1.7), while the Virgin Islands ratio is somewhat higher (2.8). But much higher still are the ratios for Guam (5.9), American Samoa (6.5), and—by far the highest—the Northern Marianas (8.8). The comparatively high total fertility rates (TFR) for Guam and American Samoa, shown in Table 9.2, would indicate that those two territories have relatively young populations, and hence that the birth/death ratio would be relatively high. The ratio for the Northern Marianas is the anomalous figure in this regard, because the Northern Marianas has much the smallest TFR level among the geographic areas shown in Tables 9.2 and 9.3. There may be several possible reasons for this anomaly, such as under-reporting of deaths, which further research should pursue.

NCHS regularly publishes limited information on selected demographic and health characteristics of births for the territories, shown in Tables 9.5 thru 9.8 as available for the years 1994 through 2005. Other data items are, however, generally available, and Table 9.4 shows for each territory the item availability and the percentage of birth records on which available items were not stated for the year 2004. Data are not shown for the variables race, age, and marital status of mother, because missing data are imputed by NCHS in these cases. Hispanic origin of mother is well reported in those jurisdictions where the information is requested. Hispanic origin of mother and father is not reported on birth certificates in American Samoa, the Northern Marianas, and Puerto Rico (prior to 2005); it is not well reported for fathers in Guam, the Virgin Islands, and the United States generally. Father's age and race tend to be the least reported items in all geographic areas. The American Samoa birth certificate does not collect information on a number of health characteristics of the mother and birth. Otherwise, the percent not stated for other demographic and health characteristics on the territories' birth records is quite similar to that of the total United States.

Tables 9.5 and 9.6 show the count distribution of live births by race of mother and by Hispanic origin of mother, respectively. These data are presented to aid in the interpretation of data in Tables 9.7-9.8. It may be noted that in 2005 Asian or Pacific Islander mothers constitute

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about 90 percent of the mothers of live births in Guam, 98.5 percent in the Northern Marianas, and all but a few in American Samoa.

Table 9.8 shows the trend in number and percentage of births to unmarried women, by race and Hispanic origin of mother, for the five territories, three states, and the total United States. Considering mothers of all races combined, the United States overall and the three states, California, Washington, and Hawaii, exhibit similar levels of non-marital births (about one-third) and all have shown increases over the period 1996-2005. In 2005, 36.9 percent of all births in the United States (excluding territories) were to unmarried women, and the percentage has risen steadily since the mid 1990's.

Between 1994 and 2005, the proportion of all births to unmarried women in the United States increased for non-Hispanic white and American Indian or Alaska Native (AIAN) women, rising steadily from 20.8 to 25.3 percent for the former and from 57.0 to 63.5 percent for the latter. The percent unmarried among Hispanic mothers increased from 40.7 in 1996 to 48.0 in 2005. The proportion for non-Hispanic black women actually declined somewhat from 1994 (70.7 percent) to 2002 (68.4 percent) and then increased to 69.9 percent in 2005; a similar trend occurred among Asian or Pacific Island mothers, dropping from 16.7 percent in 1996 to 14.9 in 2002 and then rising to 16.2 percent. API mothers have by far the lowest proportion unmarried of all the race/ethnicity groups in the U.S.

Considering the Pacific Islands, Table 9.8 shows that proportions of non-marital births to API mothers in American Samoa have also fluctuated around one-third (34.2 percent in 2005), though without an apparent increase over the 1997-2005 period. Non-marital births in 2005 were slightly higher for API mothers in Hawaii (40.4 percent), and much higher in the Northern Marianas (56.3 percent) and Guam (64.2 percent). In contrast, the percent unmarried in 2005 among API mothers was strikingly lower at 16.2 percent in the U.S. and only 14.5 percent in California; however, this comparison must be interpreted with caution in light of the different composition of the API population in the U.S. vis-à-vis the Pacific islands.

The United States and three states have similar proportions of non-marital births among non-Hispanic white mothers (20 to 25 percent), and the Virgin Islands is somewhat higher for this group, in the range of 25 to 30 percent in recent years. The Virgin Islands also has somewhat higher proportions of non-marital births for non-Hispanic black mothers (70 to 75 percent) than in the United States as a whole (68 to 70 percent), and much higher proportions for Hispanic mothers (65 to 74 percent) than in the United States as a whole (40 to 48 percent). Data for Puerto Rico in 2005 indicate a proportion of non-marital births similar to the Virgin Islands for non-Hispanic black mothers (72.5 percent) but a much lower proportion for Hispanic mothers (56.5 percent).

In the territories, the proportion of births to unmarried women has been increasing for some population subgroups, but not all. And, to the extent that the quality of the data is judged to be satisfactory, there is considerable variation by race and ethnicity between the jurisdictions, indicating a uniqueness of socio-economic and cultural environment in each territory with regard to unmarried childbearing.

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Each year, NCHS publishes data by jurisdiction on several aspects of medical services utilization by birth mothers. One aspect of this topic is the timing of prenatal care, an important public-health indicator because appropriate prenatal care can enhance pregnancy outcome by assessing risk, providing health care advice, and managing chronic and pregnancy-related health conditions. Table 9.9 presents trends in the percent of mothers beginning prenatal care in the first trimester, by race and Hispanic origin of mother, for four territories, three states, and the total United States (American Samoa does not report prenatal care). Table 9.9 also presents trends in the percent of mothers with late or no prenatal care. This table includes data on the timing of prenatal care based only on the 1989 Revision of the U.S. Standard Certificate of Live Birth, because the 2003 Revision introduced substantive changes in item working and also sources of prenatal information to the extent that it is not directly comparable with data from the 1989 Revision. This only affects the data for 2003-2004, as stated in the footnotes to Table 9.9.

In 2005, 83.9 percent of all mothers in the United States (excluding territories) were reported to have begun care within the first 3 months of pregnancy. Prenatal care utilization had improved modestly, but quite steadily, from 1994 (80.2 percent) to 2003 (84.1 percent); during this period there was a slight decline in the percent receiving late (last trimester) or no prenatal care (4.4 to 3.5 percent). Between 1994 and 2005, the proportion of non-Hispanic black mothers and Hispanic mothers receiving first trimester care also increased, rising steadily from 68.3 to 76.5 percent for the former and from 68.9 to 77.6 percent for the latter. Proportions of API and AIAN mothers receiving first trimester care showed a somewhat lesser increase, the former rising from 79.7 to 85.3 and the latter from 65.2 to 69.6 between 1994 and 2005. The proportion for non-Hispanic white mothers increased only slightly from 1994 (86.5 percent) to 2003 (89.0 percent) and then decreased to 88.7 percent in 2005 (based on fewer jurisdictions).

Considering mothers of all races combined in 2002, the United States, the three states (California, Washington, and Hawaii), and Puerto Rico exhibit similar proportions of mothers receiving first trimester care, ranging from 81.2 percent in Puerto Rico to 86.4 percent in California, and all have shown increases over the period 1996-2005 except Washington, which has fluctuated around 83.0 (through 2002), and Hawaii, which has declined somewhat from 84.2 to 81.5 percent. While the percent of mothers receiving first trimester care has increased significantly from 55.7 percent in 1994 to 65.9 percent in 2005 for the Virgin Islands, these proportions are well below those of the states and the United States as a whole. The percent for Guam has fluctuated in the same low range as the Virgin Islands (around 62.3 percent). A little more than a tenth of Virgin Islands and Guam mothers have had late or no prenatal care. But the Northern Marianas have by far the lowest proportion of mothers with first trimester care, ranging from 24.8 to 33.3 percent over the period from 1998 to 2005, and the highest proportion with late or no prenatal care, ranging from 24.4 to 34.7 percent over the same period.

The second aspect of health services utilization to be discussed here is method of delivery, generally characterized as either vaginal or cesarean. Table 9.10 presents trends (for all races combined only) in the percent of all births delivered by cesarean section for four territories (American Samoa does not report method of delivery), three states, and the total United States. In 2005, the U.S. rate of cesarean delivery increased to 30.3 percent, the highest rate ever reported in the United States. After falling between 1989 and 1996, the cesarean rate rose by 46 percent from the 1996 low of 20.7. In 2005, the cesarean rates for non-Hispanic

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white and black women were 30.4 and 32.6, respectively (not shown in Table 9.10). The rate of cesarean delivery in 2005 for American Indian or Alaska Native women was 25.9 percent, 29.7 for Asian or Pacific Islander women, and 29.0 percent for Hispanic women.

Considering mothers of all races combined in 2005, the territories of the Virgin Islands and Guam had reached the same cesarean delivery level of 27.5 percent, very similar to that of Washington State (27.8 percent); these rates were not far below the rate for API women in the United States. However, the trends for the Virgin Islands and Guam were very different. By 2005, the cesarean delivery rate had increased by 31 percent in the Virgin Islands (from the 1995 rate of 21.0 percent), while the rate in Guam had increased 88 percent (from the 1995 rate of 14.6 percent). As a reference point, the rate in Washington increased 60 percent (from 17.4 in 1995). Between 1995 and 2005, Puerto Rico experienced a 54 percent increase in its cesarean rate from 31.2 to 48.1 percent, by far the highest cesarean rate of the jurisdictions under consideration here. Meanwhile, during 1998-2005 the Northern Marianas fluctuated between 14.9 and 24.8 percent cesarean deliveries without any clear overall trend.

On the topic of infant health characteristics, an important predictor of future morbidity and mortality is the weight of the newborn. Infants born at less than 2,500 grams (5 lb 8 oz) are identified as low birth-weight (LBW), and infants born at less than 1,500 grams (3 lb 4 oz) are regarded as very low birth-weight (VLBW). For very low birth-weight infants, it has been estimated that the risk of dying in the first year of life is nearly 100 times that of normal weight infants.

Data in Table 9.10 show numbers and percents of births delivered LBW and VLBW for the United States, the three states, and five territories over the years 1994-2005. In the United States, the LBW rate has generally been increasing for two decades; the 2005 rate of 8.2 percent is 22 percent higher than the 1984 low (6.7 percent). In 2005, the LBW (VLBW) rates for infants of non-Hispanic white and black women were 7.3 (1.2) and 14.0 (3.3), respectively; LBW (VLBW) rates for infants of AIAN and API women were 7.4 (1.2) and 8.0 (1.1), respectively (not shown in Table 9.10). The 2005 LBW (VLBW) rate for infants of Hispanic women was 6.9 (1.2) percent.

Like the United States as a whole, the LBW rates have generally been increasing over the 1994-2005 period for all three states (California, Washington, and Hawaii) and three of the five territories (Virgin Islands, Puerto Rico, and Guam). Possibly due to the variability inherent in small numbers, the LBW rates for American Samoa and the Northern Marianas have tended to fluctuate without a clear trend up or down; American Samoa's LBW rate has fluctuated in the extraordinarily low range of 2.7 to 4.2 percent, a finding that warrants more in-depth research. The LBW rate for the Northern Marianas, which seems to have a downward trend, is fairly similar to the levels for Guam, Hawaii, and the United States as a whole. In 2005, the Virgin Islands had the second highest LBW rate of the five territories, and Puerto Rico had the highest at 12.8 percent, 56 percent higher than the United States' rate of 8.2. Despite this high LBW rate, Puerto Rico had a VLBW rate (1.4 percent) essentially the same as that for Guam, Hawaii, and the United States. Over the 1994-2005 period, the Virgin Islands' VLBW rate has fluctuated around an average of 2.0, the highest of the five territories.

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Mortality

The measures of mortality presented in this report for the five U.S. territories, three states, and the total United States include the number of deaths and the crude and age-adjusted death rates by fifteen major causes of death (Table 9.11) and the number of infant and neonatal deaths and mortality rates (Table 9.12), as published in annual issues of Final Data for Deaths in the National Vital Statistics Report (NVSR) (Monthly Vital Statistics Report through 1996). Most of the analysis by cause of death will utilize the age-adjusted death rates (AADR), which are constructs that show what the level of mortality would be if no changes occurred in the age composition of the population from year to year or between geographic areas. Age-adjusted death rates are better indicators than unadjusted (crude) death rates for examining changes in the risk of death over a period of time when the age distribution of the population is changing, or when comparing mortality across geographic areas that have different age compositions.

Where available at the time of this report, the mortality data are shown for the years 1994 through 2005 (some tables will show data only through 2004). In analyzing these data, there are three factors that can affect the trends and differentials during this period. First, until 1998 the standard population used for age-adjusting death rates was based on the estimated year 1940 population of the United States. For the year 1999 and later, age-adjustment has been done using a new standard population based on the estimated year 2000 population of the United States. The statistical consequences of the new standard are generally to increase the magnitude of rates and to affect differentials between groups and over time but not to alter trends. Second, effective with data for 1999, causes of death are classified by the World Health Organization's Tenth Revision of the International Classification of Diseases (ICD-10), replacing the Ninth Revision (ICD-9) that was used for 1979-1998 data. The consequences of this ICD change, as they affect this report, were: 1) new cause-of-death titles and corresponding cause-of-death codes; and 2) breaks in comparability over time—before and after 1999—for cause-of-death statistics. Third, as noted above, populations used for computing death rates for 1994-2000 and 2001-2004 are estimates based on the 1990 and 2000 censuses, respectively. This change may mark a shift in death rates for the territories, particularly American Samoa and the Virgin Islands which had 12 percent and 10 percent reductions, respectively, between their July 1, 2000, population estimates based on the 1990 censuses and estimates based on the 2000 censuses. Despite these three factors, the mortality trends and differentials should be directly comparable at least for the years 2001 through 2004, but also for the years 1999 through 2004 for those populations for which there was only a very small shift in population estimates.

In 2004, the age-adjusted death rate for the United States was 800.8 per 100,000 U.S. standard population, having declined steadily from a level of 881.9 in 1999. In 2004 the U.S. AADR exceeded the AADRs of the Virgin Islands (693.6), and Guam (686.0) as well as Hawaii (623.1) as a comparison; these territories plus Hawaii had experienced significant declines in AADR since 1999. The remaining two U.S. territories in this study, which had relatively small annual numbers of deaths resulting in considerable rate fluctuation, showed no noticeable trend in recent years, but both have 2004 AADRs much higher than the United States: American Samoa's AADR was 1,352.2 and the Northern Marianas' AADR was 1,160.1, both per 100,000 U.S. standard population.

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The fifteen major causes of death, abstracted from annual issues of final reports on mortality (NVSR) and shown in Table 9.11, are essentially the 15 leading causes for the United States in 2004, except for Septicemia, Essential hypertension and hypertensive renal disease, and Parkinson's disease, and with a few additions (Human immunodeficiency virus, Motor vehicle accidents, and Injury by firearms). Except for Human immunodeficiency virus and Influenza and pneumonia, these are either chronic (non-infectious) conditions or external causes. These 15 major causes in 2004 accounted for 83 percent of all deaths in the United States and Guam; 86 percent in the Virgin Islands; 80 percent in the Northern Marianas; 78 percent in Hawaii; and 72 percent in American Samoa.

In the United States, the three leading causes of death, heart disease, cancer, and stroke, have declined steadily for a number of years. Except for a relatively small increase in 1993, mortality from heart disease has steadily declined since 1980. The AADR for cancer has shown a gradual but consistent downward trend since 1993, and the rate for stroke has generally declined since 1958, with the exception of an increase of 2.6 percent between the years 1992 and 1995. The AADRs in Table 9-11 show that these declines have in recent years been occurring also for Hawaii. Given the relatively small numbers of deaths for these three leading causes in the Virgin Islands, Guam, American Samoa, and the Northern Marianas, the resulting AADR fluctuations over the years 2001-2004 would tend to mask the suggestion of a decline that may be occurring in these territories, with the possible exception of cancer and stroke mortality declines in the Virgin Islands and heart disease mortality declines in Guam and American Samoa. Moreover, these small numbers also create significant fluctuations in the cause-specific AADR rates, making the identification of a trend difficult.

Table 9.12 presents statistics provided by the U.S. territories on infant and neonatal deaths and mortality rates. For a given jurisdiction, an infant mortality rate is calculated as the number of infant (under 1 year) deaths per 1,000 live births; a neonatal mortality rate is the number of neonatal (under 28 days) deaths per 1,000 live births. The United States infant mortality rate declined fairly steadily over the years 1994 to 2004, dropping from 8.0 to 6.87 infant deaths per 1,000 live births; there has been a smaller decline for the neonatal mortality rate from 5.1 to 4.54. Table 9-12 shows indicates a contrary movement for Guam—an apparent sudden increase in infant mortality rate in 2003-2004 (which has continued into 2005). Numbers of infant deaths were too small in the Virgin Islands, American Samoa, and the Northern Marianas to calculate reliable rates.

Comments

An analysis of vital statistics data from the U.S. territories (VI, AS, CNMI, and Guam) must take into account several critical caveats. First, there is the usual question of registration completeness for both births and deaths that any registration system must face, as well as the question of completeness and accuracy of data reported on certificates of birth and death. Complicating this picture is the issue of analyzing small numbers, which immediately occurs in detailed tabulations; trend data and 3-year averages can help with this issue but will not always be a complete solution. Then there are the complications introduced by changes in classification, in certificate format and content, and in methods for standardizing data to facilitate comparisons.

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And finally there is the problem of creating valid population estimates for use in calculating birth and death rates, very important demographic indicators.

Overriding all of this are the confounding effects of in- and out-migration on both vital registration and census taking. These island communities are not sealed off from their environments, and they experience considerable and frequent population movement in and out that is difficult to identify and quantify. All of these issues have had their impact on the statistical analyses presented above, and only a more detailed investigation of the demographic picture in each location, together with the recommendations proposed below, can hope to create a clearer statement about the health status of each territory.

From interviews and statistical analysis it has become patently obvious that these U.S. territories are unique in their cultures, resources, social issues, economic conditions, and political organizations. The problems and solutions for gathering health data must take these variants into account in order to be efficacious. But the potential and enthusiasm for a sound, basic vital statistics system are alive and well in each community; these systems only need a reasonable amount of resources and legal/political backing to develop the kind of health data systems that will guide health providers, managers, and planners with the tools they need to do their jobs better.

Despite the limitations and challenges in the four territories, the vital statistics system is the only established health data collection system available with universal coverage to public health practitioners in those territories. As the pillar of public health, strengthening the islands’ health data systems must begin with strengthening the vital statistics system.

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Table 9.1. Final birth and death totals and estimated populations for Virgin Islands, Guam, American Samoa, Northern Marianas, Hawaii, Puerto Rico, and the U.S., 1994-2005

Total Births Virgin American Northern Total Puerto Year Islands Guam Samoa Marianas Hawaii U.S.1 Rico 2005 1,605 3,187 1,720 1,335 17,924 4,138,349 50,564 2004 1,574 3,410 1,714 1,355 18,281 4,112,052 51,127 2003 1,522 3,281 1,608 1,349 18,100 4,089,950 50,696 2002 1,634 3,212 1,627 1,290 17,477 4,021,726 52,747 2001 1,669 3,564 1,655 1,449 17,072 4,025,933 55,866 2000 1,564 3,766 1,731 1,431 17,551 4,058,814 59,333 1999 1,671 4,021 1,736 1,381 17,038 3,959,417 59,563 1998 1,800 4,318 1,688 1,462 17,583 3,941,553 60,412 1997 2,017 4,309 1,634 --- 17,393 3,880,894 64,109 1996 1,905 4,259 ------18,401 3,891,494 63,141 1995 2,063 4,180 ------18,595 3,899,589 63,425 1994 2,396 4,410 ------19,517 3,952,767 64,213 Average births 1,785 3,826 1,679 1,382 17,911 3,997,712 57,933

Total Deaths 2005 663 677 272 186 9,136 2,448,017 29,531 2004 626 683 286 164 9,030 2,397,615 28,912 2003 631 680 256 142 8,978 2,448,288 28,202 2002 617 638 290 161 8,801 2,443,387 27,924 2001 605 663 239 148 8,394 2,416,425 29,082 2000 641 648 219 136 8,290 2,403,351 28,365 1999 659 693 246 162 8,270 2,391,399 28,967 1998 615 632 243 162 8,091 2,337,256 29,865 1997 620 615 257 --- 7,892 2,314,245 28,963 1996 575 599 ------7,948 2,314,690 29,731 1995 664 592 ------7,633 2,312,132 30,032 1994 602 605 ------7,336 2,278,994 28,292 Average deaths 627 644 256 158 8,317 2,375,483 28,989 Ratio B/D 2.8 5.9 6.5 8.8 2.2 1.7 2.0

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Table 9.1. cont. Estimated Populations as of July 1 2005 2 108,708 168,564 62,378 80,362 1,275,194 296,410,404 3,912,054 2004 2 108,775 166,090 57,902 78,252 1,262,840 293,655,404 3,894,855 2003 2 108,814 163,593 57,844 76,129 1,257,613 290,810,789 3,878,532 2002 2 108,810 161,057 57,716 74,003 1,244,898 288,368,706 3,858,806 2001 2 108,749 158,330 57,529 71,868 1,227,024 284,796,887 3,838,361 2000 2 108,637 155,324 57,301 69,706 1,211,537 281,421,906 3,815,893 2001 3 122,211 157,557 67,084 74,612 1,178,447 277,739,757 3,937,316 2000 3 120,917 154,623 65,446 71,912 1,179,178 275,264,999 3,915,798 1999 3 119,615 151,968 63,781 69,216 1,185,497 272,690,813 3,889,507 1998 3 118,382 149,101 62,093 66,611 1,193,001 270,298,524 3,857,070 1997 3 114,483 145,780 60,383 --- 1,186,602 267,636,061 3,827,038 1996 3 113,245 144,778 ------1,183,723 265,283,783 3,782,862 1995 3 112,120 143,643 ------1,186,815 262,755,270 3,731,006 1994 3 110,415 142,718 ------1,178,564 260,340,990 3,687,158 --- Data not available Source: Annual estimates provided by the U.S. Census Bureau. 1 Excludes data for the territories. 2 Postcensal estimates as of July 1 based on the year 2000 census for 2000-2005. 3 Postcensal estimates as of July 1 based on the year 1990 census for 1996-2001.

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Table 9.2: Number of births, birth rates, fertility rates, total fertility rates, and birth rates for teenagers 15-19 years, by age of mother: Virgin Islands, Guam, American Samoa, Northern Marianas, and Hawaii, 1994-2005 [By place of residence] General Total Teenage birth rate Territory/State Number Birth fertility fertility and year of births rate rate rate Total 15-17 yrs. 18-19 yrs. Virgin Islands 2005 1,605 14.8 71.8 2,341.5 50.0 22.2 112.5 2004 1,574 14.5 69.7 2,253.5 52.7 24.4 115.2 2003 1,522 14.0 66.8 2,157.0 50.9 25.2 106.1 2002 1,634 15.0 71.1 2,286.5 56.8 26.1 121.5 2001 1,669 13.7 63.4 1,922.0 51.5 31.8 82.5 2000 1,564 12.9 57.6 1,680.0 46.8 26.3 78.1 1999 1,671 14.0 64.3 1,957.5 55.2 32.0 89.9 1998 1,800 15.2 61.4 2,122.5 62.0 40.1 94.5 1997 2,017 17.6 80.3 2,426.5 66.0 45.6 96.7 1996 1,905 16.8 76.1 2,328.5 54.9 35.0 84.9 1995 2,063 18.4 ------1994 2,396 21.7 ------Guam 2005 3,187 18.9 85.0 2,576.0 59.2 33.5 100.5 2004 3,410 20.5 91.9 2,779.5 62.6 37.1 103.1 2003 3,281 20.1 89.4 2,678.5 64.3 36.4 109.5 2002 3,212 19.9 88.3 2,634.5 64.7 41.7 102.1 2001 3,564 22.6 113.7 3,472.5 70.5 39.8 118.6 2000 3,766 24.4 113.8 3,444.5 69.5 46.2 109.4 1999 4,021 26.5 129.2 3,898.5 96.6 54.9 163.3 1998 4,318 29.0 139.0 4,166.5 104.8 60.4 176.1 1997 4,309 29.6 138.9 4,137.5 106.3 61.4 178.2 1996 4,259 29.4 135.1 3,983.5 116.8 69.5 191.5 1995 4,180 29.1 ------1994 4,410 30.9 ------American Samoa 2005 1,720 27.6 125.5 3,922.0 34.2 11.7 74.6 2004 1,714 29.6 132.4 4,140.0 45.8 20.2 91.5 2003 1,608 27.8 124.7 3,852.0 40.4 15.8 87.6 2002 1,627 28.2 126.7 3,858.0 46.2 20.5 93.6 2001 1,655 24.7 113.9 3,497.0 38.9 10.7 83.7 2000 1,731 26.4 108.2 3,348.0 38.1 16.8 75.1 1999 1,736 27.0 125.1 3,746.0 46.4 21.6 86.3 1998 1,688 27.2 124.6 3,718.5 43.9 17.3 86.4 1997 1,634 27.1 123.5 3,657.0 43.9 20.7 81.5 1996 ------1995 ------1994 ------

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Table 9.2 cont. Northern Marianas 2005 1,335 16.6 41.4 1,163.0 30.4 22.2 40.1 2004 1,355 17.3 43.6 1,229.0 39.3 26.0 55.7 2003 1,349 17.7 45.1 1,290.5 42.3 33.1 53.5 2002 1,290 17.4 45.1 1,266.5 42.3 27.7 60.1 2001 1,449 19.4 57.5 1,653.0 56.8 34.1 86.0 2000 1,431 19.9 60.5 2,010.0 61.1 42.0 92.0 1999 1,381 20.0 58.9 1,665.5 62.0 50.5 76.4 1998 1,462 21.9 65.0 1,792.5 65.5 50.4 83.7 1997 ------1996 ------1995 ------1994 ------Hawaii 2005 17,924 14.1 72.9 2,276.0 36.2 19.0 61.8 2004 18,281 14.5 74.0 2,301.5 36.1 18.5 61.8 2003 18,100 14.4 72.2 2,242.5 37.3 18.7 63.9 2002 17,477 14.0 68.6 2,137.0 38.2 17.7 66.4 2001 17,072 14.5 71.4 2,311.0 42.5 22.4 66.5 2000 17,551 14.9 72.3 2,337.0 45.1 24.7 70.5 1999 17,038 14.4 68.7 2,216.5 43.8 25.6 67.2 1998 17,583 14.7 69.6 2,238.0 45.7 29.5 67.3 1997 17,393 14.7 69.0 2,208.0 43.8 25.3 69.6 1996 18,401 15.5 72.5 2,299.5 48.1 28.0 76.2 1995 18,595 15.7 72.2 ------1994 19,517 16.6 74.7 ------Data not available. See notes at end of Table 8.2b.

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Table 9.3: Number of births, birth rates, fertility rates, total fertility rates, and birth rates for teenagers 15-19 years, by age of mother: United States, California, Washington, and Puerto Rico, 1994-2005 [By place of residence] General Total Teenage birth rate

Territory/State Number Birth fertility fertility 15-19 years and year of births rate rate rate Total 15-17 yrs. 18-19 yrs. United States1 2005 4,138,349 14.0 66.7 2,053.5 40.5 21.4 69.9 2004 4,112,052 14.0 66.3 2,045.5 41.1 22.1 70.0 2003 4,089,950 14.1 66.1 2,042.5 41.6 22.4 70.7 2002 4,021,726 13.9 64.8 2,013.0 43.0 23.2 72.8 2001 4,025,933 14.5 66.9 2,114.5 45.8 25.2 75.5 2000 4,058,814 14.7 67.5 2,130.0 48.5 27.4 79.2 1999 3,959,417 14.5 65.9 2,075.0 49.6 28.7 80.3 1998 3,941,553 14.6 65.6 2,058.5 51.1 30.4 82.0 1997 3,880,894 14.5 65.0 2,032.5 52.3 32.1 83.6 1996 3,891,494 14.7 65.3 2,027.0 54.4 33.8 86.0 1995 3,899,589 14.8 65.6 2,019.0 56.8 36.0 89.1 1994 3,952,767 15.2 66.7 2,036.0 58.9 37.6 91.5 California 2005 548,882 15.2 71.3 2,183.0 38.8 21.0 67.6 2004 544,843 15.2 70.4 2,150.5 39.5 21.2 67.9 2003 540,997 15.2 69.9 2,131.5 40.1 21.8 68.1 2002 529,357 15.1 68.3 2,074.0 41.1 22.6 69.1 2001 527,759 15.5 69.5 2,151.0 45.2 26.0 70.6 2000 531,959 15.8 70.7 2,186.0 48.5 28.6 75.6 1999 518,508 15.6 69.5 2,151.0 50.7 30.9 78.5 1998 521,661 16.0 70.7 2,184.5 53.5 33.4 83.4 1997 524,840 16.3 72.3 2,230.5 57.3 36.2 90.5 1996 539,433 16.9 74.8 2,295.0 62.6 39.2 99.1 1995 552,045 17.5 76.6 ------1994 567,930 18.1 78.3 ------Washington 2005 82,703 13.2 62.1 1,911.0 31.1 15.2 54.8 2004 81,747 13.2 61.7 1,907.5 31.3 15.7 54.1 2003 80,489 13.1 61.2 1,899.5 31.5 15.5 55.5 2002 79,028 13.0 60.2 1,886.0 33.0 16.8 57.6 2001 79,570 13.6 61.9 1,963.0 34.9 17.7 59.8 2000 81,036 13.9 63.2 2,011.5 38.2 20.3 64.5 1999 79,586 13.8 62.1 1,988.0 40.1 21.5 67.6 1998 79,663 14.0 62.3 1,993.5 41.7 23.2 69.6 1997 78,190 13.9 61.8 1,978.5 42.5 24.5 70.7 1996 77,945 14.1 62.0 1,977.0 45.0 26.1 74.5 1995 77,228 14.2 62.1 ------1994 77,358 14.5 62.9 ------

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Table 9.3 cont. Puerto Rico 2005 50,564 12.9 59.4 1,759.0 61.2 40.8 92.2 2004 51,127 13.1 59.9 1,772.5 61.7 41.5 92.0 2003 50,696 13.1 59.4 1,756.5 59.5 41.0 87.2 2002 52,747 13.7 61.6 1,822.5 62.2 42.8 91.1 2001 55,866 14.2 61.2 1,761.5 68.0 46.1 100.2 2000 59,333 15.2 64.9 1,857.0 71.5 49.1 103.8 1999 59,563 15.3 65.3 1,865.5 72.0 50.3 102.7 1998 60,412 15.7 66.8 1,906.5 74.3 54.4 102.3 1997 64,109 16.8 71.1 2,029.0 77.8 57.6 106.6 1996 63,141 16.7 70.8 2,023.5 74.8 55.6 102.7 1995 63,425 17.0 ------1994 64,213 17.4 ------Data not available. 1 Excludes data for the territories. NOTES: Birth rates are live births per 1,000 estimated population in each area; general fertility rates are live births per 1,000 women aged 15-44 years estimated in each area; total fertility rates are sums of birth rates for 5-year age groups multiplied by 5; birth rates by age are live births per 1,000 women in specified age group estimated in each area. Populations used for computing birth and fertility rates for 1994-2001 and 2002-2005 are post-censal estimates based on the 1990 and 2000 censuses, respectively, estimated as of July 1.

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Table 9.4: Percentage of birth records on which specified items were not stated: Virgin Islands, Guam, American Samoa, Northern Marianas, Hawaii, total U.S., and Puerto Rico, 2004 [By place of residence]

Virgin American Northern Total Puerto Birth certificate item Islands Guam Samoa Marianas Hawaii U.S.1 Rico All Births 1,574 3,410 1,714 1,355 18,281 4,112,052 51,127 Percentage not stated: Place of birth - 0.1 0.2 - - 0.0 - Attendant at birth 0.3 0.4 - 0.5 0.1 0.2 0.1 Mother's birthplace - 0.4 3.9 - 0.2 0.4 - Father's age 21.0 22.3 36.4 8.9 8.6 13.6 3.2 Father's race 22.1 22.6 36.5 9.0 12.3 16.0 4.3 Hispanic origin—mother 4.3 1.5 ------0.2 0.8 --- Hispanic origin—father 60.7 27.8 ------8.6 14.1 --- Education of mother 1.0 1.4 --- 8.1 1.2 2.0 0.3 Live-birth order 1.3 2.3 - 5.4 0.0 0.5 0.1 Length of gestation - 0.1 --- 0.7 0.2 1.0 0.0 Month prenatal care began 0.1 1.1 --- 4.4 3.4 2.5 0.2 Number of prenatal visits 2.6 1.5 --- 4.0 2.8 3.6 0.1 Birthweight 0.6 0.1 - 0.4 0.1 0.1 0.0 5-minute apgar score 1.6 0.6 --- 1.5 0.5 0.5 0.1 Weight gained 13.0 2.8 ------13.3 5.9 0.0 Tobacco use 1.5 1.0 --- 6.4 0.1 1.1 - Method of delivery 1.7 0.2 --- 3.4 0.5 0.4 0.0 0.0 Quantity more than zero but less than 0.05. - Quantity zero --- Data not available 1 Excludes data for the territories.

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Table 9.5: Live births by race of mother: Virgin Islands, Guam, American Samoa, Northern Marianas, and Hawaii, 1994-2005 [By place of residence] Number Territory/State All American Indian Asian or and year races White Black or Alaska Native Pacific Islander Virgin Islands 2005 1,605 415 1,168 10 12 2004 1,574 383 1,161 5 25 2003 1,522 351 1,147 2 22 2002 1,634 326 1,222 86 - 2001 1,669 367 1,230 72 - 2000 1,564 320 1,191 51 2 1999 1,671 313 1,288 65 5 1998 1,800 357 1,396 45 2 1997 2,017 363 1,595 56 3 1996 1,905 350 1,503 46 6 1995 2,063 411 1,595 41 16 1994 2,396 368 2,001 8 19 Guam 2005 3,187 279 31 5 2,872 2004 3,410 272 32 6 3,100 2003 3,281 276 39 5 2,961 2002 3,212 260 41 2 2,909 2001 3,564 234 37 4 3,289 2000 3,766 287 36 3 3,440 1999 4,021 320 49 2 3,650 1998 4,318 348 46 4 3,920 1997 4,309 421 70 2 3,816 1996 4,259 427 48 7 3,777 1995 4,180 429 62 9 3,680 1994 4,410 538 73 4 1,912 American Samoa 2005 1,720 2 - - 1,718 2004 1,714 4 - - 1,710 2003 1,608 2 - - 1,606 2002 1,627 8 - - 1,619 2001 1,655 3 - - 1,652 2000 1,731 4 - - 1,727 1999 1,736 6 - - 1,730 1998 1,688 10 - - 1,678 1997 1,634 8 - - 1,626 1996 ------1995 ------1994 ------

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Table 9.5 cont. Northern Marianas 2005 1,335 19 1 - 1,315 2004 1,355 20 - - 1,335 2003 1,349 13 - - 1,336 2002 1,290 17 1 - 1,272 2001 1,449 19 - - 1,430 2000 1,431 24 - - 1,407 1999 1,381 30 - - 1,351 1998 1,462 29 - - 1,433 1997 ------1996 ------1995 ------1994 ------Hawaii 2005 17,924 5,115 487 117 12,205 2004 18,281 5,179 573 67 12,462 2003 18,100 5,086 583 71 12,360 2002 17,477 3,953 475 171 12,878 2001 17,072 3,815 527 183 12,547 2000 17,551 4,022 472 189 12,868 1999 17,038 3,999 460 203 12,376 1998 17,583 4,176 560 187 12,660 1997 17,393 4,481 578 187 12,147 1996 18,401 4,799 515 186 12,901 1995 18,595 4,968 564 182 12,881 1994 19,517 5,435 627 188 13,267 --- Data not available - Quantity zero See notes at end of Table 8.4b.

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Table 9.6: Live births by race of mother: United States, California, Washington, and Puerto Rico, 1994-2005 [By place of residence] Number Territory/State All American Indian Asian or Pacific and year races White Black or Alaska Native Islander United States1 2005 4,138,349 3,229,294 633,134 44,813 231,108 2004 4,112,052 3,222,928 616,074 43,927 229,123 2003 4,089,950 3,225,848 599,847 43,052 221,203 2002 4,021,726 3,174,760 593,691 42,368 210,907 2001 4,025,933 3,177,626 606,156 41,872 200,279 2000 4,058,814 3,194,005 622,598 41,668 200,543 1999 3,959,417 3,132,501 605,970 40,170 180,776 1998 3,941,553 3,118,727 609,902 40,272 172,652 1997 3,880,894 3,072,640 599,913 38,572 169,769 1996 3,891,494 3,093,057 594,781 37,880 165,776 1995 3,899,589 3,098,885 603,139 37,278 160,287 1994 3,952,767 3,121,004 636,391 37,740 157,632 California 2005 548,882 445,277 32,252 3,121 68,232 2004 544,843 441,330 32,049 2,976 68,488 2003 540,997 438,374 32,349 2,916 67,358 2002 529,357 428,549 32,653 3,033 65,122 2001 527,759 428,238 33,774 2,926 62,821 2000 531,959 429,638 35,046 3,032 64,243 1999 518,508 421,541 35,403 3,243 58,321 1998 521,661 424,659 36,745 3,373 56,884 1997 524,840 426,231 37,320 3,355 57,934 1996 539,433 439,523 38,371 3,343 58,196 1995 552,045 449,889 40,260 3,523 58,373 1994 567,930 462,719 42,807 3,355 59,049 Washington 2005 82,703 67,917 4,230 2,083 8,473 2004 81,747 67,165 4,056 2,138 8,388 2003 80,489 66,581 4,015 2,051 7,842 2002 79,028 66,519 3,393 1,920 7,196 2001 79,570 67,437 3,334 1,897 6,902 2000 81,036 68,676 3,497 1,972 6,891 1999 79,586 68,273 3,331 1,875 6,107 1998 79,663 69,024 3,111 1,828 5,700 1997 78,190 67,635 3,181 1,729 5,645 1996 77,945 67,577 3,115 1,855 5,398 1995 77,228 67,306 2,962 1,699 5,261 1994 77,358 67,600 3,065 1,681 5,012

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Table 9.6 cont. Puerto Rico 2005 50,564 45,556 4,991 ------2004 51,127 46,399 4,702 ------2003 50,696 46,067 4,605 ------2002 52,747 47,811 4,925 ------2001 55,866 51,285 4,564 ------2000 59,333 64,552 4,773 ------1999 59,563 54,548 5,003 ------1998 60,412 55,814 4,581 ------1997 64,109 59,342 4,745 ------1996 63,141 58,079 5,003 ------1995 63,425 58,430 4,794 ------1994 64,213 59,962 4,040 ------Data not available 1 Excludes data for the territories. NOTES: Race and Hispanic origin are reported separately on birth certificates. Race categories are consistent with the 1977 Office of Management and Budget standards. Nineteen states reported multiple race data for 2005. The multiple-race data for these states were bridged to the single race categories of the 1977 OMB standards for comparability with other states. In this table all women (including Hispanic women) are classified only according to their race.

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Table 9.7: Live births by Hispanic origin of mother and by race for mothers of non-Hispanic origin: Virgin Islands, Guam and Hawaii, 1994-2005 [By place of residence] Origin of mother Territory/State All Non-Hispanic Not and year origins Hispanic Total1 White Black Stated Virgin Islands 2005 1,605 377 1,154 134 1,000 74 2004 1,574 349 1,157 118 1,010 68 2003 1,522 344 1,038 104 914 140 2002 1,634 323 1,240 83 1,086 71 2001 1,669 385 1,233 79 1,091 51 2000 1,564 328 1,195 77 1,072 41 1999 1,671 300 1,297 98 1,142 74 1998 1,800 337 1,406 107 1,257 57 1997 2,017 375 1,534 85 1,402 108 1996 1,905 321 1,505 98 1,359 79 1995 2,063 422 1,583 106 1,432 58 1994 2,396 405 1,899 139 1,738 92 Guam 2005 3,187 56 3,110 249 29 21 2004 3,410 51 3,309 237 28 50 2003 3,281 54 3,150 241 35 77 2002 3,212 54 3,069 220 39 89 2001 3,564 52 3,421 209 37 91 2000 3,766 42 3,688 250 33 36 1999 4,021 46 3,928 286 48 47 1998 4,318 44 4,257 307 45 17 1997 4,309 43 4,185 373 68 81 1996 4,259 45 4,186 390 44 28 1995 4,180 51 4,113 389 61 16 1994 4,410 66 4,294 486 72 50 Hawaii 2005 17,924 2,789 15,091 4,194 409 44 2004 18,281 2,680 15,571 4,319 483 30 2003 18,100 2,617 15,453 4,275 483 30 2002 17,477 2,422 15,021 3,200 442 34 2001 17,072 2,237 14,812 3,119 495 23 2000 17,551 2,302 15,232 3,285 440 17 1999 17,038 2,210 14,803 3,340 425 25 1998 17,583 2,240 15,332 3,529 524 11 1997 17,393 2,147 15,202 3,766 550 44 1996 18,401 2,164 16,220 4,118 489 17 1995 18,595 2,029 16,555 4,311 540 11 1994 19,517 2,176 17,334 4,728 601 7

1 Includes races other than white and black. NOTE: Race and Hispanic origin are reported separately on birth certificates.

Persons of Hispanic origin may be of any race. American Samoa and the Northern Marianas do not report Hispanic origin.

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Table 9.8: Number and percentage of births to unmarried women, by race and Hispanic origin of mother: Virgin Islands, Guam, American Samoa, Northern Marianas, and Hawaii, 1994-2005 [By place of residence]

Percent unmarried Births to unmarried women Non- Non- Territory/State All Hispanic All Hispanic and year races1 White2 Black2 Hispanic3 AIAN API races1 White2 Black2 Hispanic3 AIAN API Virgin Islands 2005 1,138 36 772 277 3 1 70.9 26.9 77.2 73.5 * * 2004 1,078 34 748 249 2 1 68.5 28.8 74.1 71.3 * * 2003 1,047 28 684 226 1 4 68.8 26.9 74.8 65.7 * * 2002 1,099 21 803 216 20 - 67.3 25.3 73.9 66.9 23.3 * 2001 1,115 29 794 255 10 - 66.8 36.7 72.8 66.2 * * 2000 1,043 28 771 213 7 - 66.7 36.4 71.9 64.9 * * 1999 1,121 27 839 200 8 4 67.1 27.6 73.5 66.7 * * 1998 1,253 45 939 225 10 1 69.6 42.1 74.7 66.8 * * 1997 1,368 25 1,014 242 17 - 67.8 29.4 72.3 64.5 * * 1996 1,224 35 952 188 8 - 64.3 35.7 70.1 58.6 * * 1995 1,288 ------8 2 62.5 ------* * 1994 1,597 49 1,252 252 4 5 66.7 35.3 72.0 62.2 * * Guam 2005 1,901 40 6 21 2 1,842 59.6 16.1 * 37.5 * 64.2 2004 1,932 38 6 13 1 1,878 56.7 16.0 * * * 60.6 2003 1,821 33 12 17 2 1,768 55.5 13.7 * * * 59.7 2002 1,778 40 13 18 1 1,713 55.4 18.2 * * * 58.9 2001 1,985 27 5 17 2 1,946 55.7 12.9 * * * 59.2 2000 2,064 53 7 12 - 1,994 54.8 21.2 * * * 58.0 1999 2,246 57 18 18 - 2,105 55.9 19.9 * * * 59.3 1998 2,341 59 11 7 3 2,215 54.2 19.2 * * * 57.7 1997 2,125 64 15 6 1 2,035 49.3 17.2 * * * 53.3 1996 2,066 66 10 9 2 1,978 48.5 16.9 * * * 52.4 1995 1,940 ------4 1,731 46.4 ------* 49.8 1994 2,054 79 16 17 - 1,702 46.6 16.3 22.2 25.8 * 49.8 American Samoa 2005 587 ------587 34.1 ------* 34.2 9-28

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2004 627 ------627 36.6 ------* 36.7 2003 609 ------609 37.9 ------* 37.9 2002 521 ------521 32.0 ------* 32.2 2001 469 ------468 28.3 ------* 28.3 2000 614 ------613 35.5 ------* 35.5 1999 616 ------614 35.5 ------* 35.5 1998 578 ------578 34.2 ------* 34.4 1997 567 ------567 34.7 ------* 34.9 Table 9.8 cont. 1996 ------1995 ------1994 ------Northern Marianas 2005 747 ------741 56.0 ------* 56.3 2004 760 ------755 56.1 ------* 56.6 2003 780 ------776 57.8 ------* 58.1 2002 770 ------765 59.7 ------* 60.1 2001 826 ------822 57.5 ------* 57.9 2000 ------1999 655 ------47.4 ------1998 667 ------45.6 ------1997 ------1996 ------1995 ------1994 ------

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Hawaii 2005 6,504 1,030 111 1,321 31 4,925 36.3 24.6 27.1 47.4 40.4 2004 6,098 1,021 137 1,196 12 4,566 33.4 23.6 28.4 44.6 17.9 36.6 2003 6,058 993 122 1,134 24 4,604 33.5 23.2 25.3 43.3 33.8 37.3 2002 5,870 537 78 1,061 79 5,017 33.6 16.8 17.6 43.8 46.2 39.0 2001 5,632 528 97 989 75 4,741 33.0 16.9 19.6 44.2 41.0 37.8 2000 5,658 498 94 1,049 76 4,782 32.2 15.2 21.4 45.6 40.2 37.2 1999 5,593 559 99 1,004 84 4,684 32.8 16.7 23.3 45.4 41.4 37.9 1998 5,544 512 112 1,016 77 4,695 31.5 14.5 21.4 45.4 41.2 37.1 1997 5,202 598 110 961 74 4,239 29.9 15.9 20.0 44.8 39.6 34.9 1996 5,569 630 99 980 70 4,571 30.3 15.3 20.2 45.3 37.6 35.4 1995 5,428 657 115 892 71 4,416 29.2 15.2 21.3 44.0 39.0 34.3 1994 5,533 710 114 946 70 4,446 28.3 15.0 19.0 43.5 37.2 33.5 --- Data not available. * Figure does not meet standards of reliability or precision. - Quantity zero. See footnotes at end of Table 9.6b.

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Table 9.9: Percentage of mothers beginning prenatal care in first trimester and percentage of mothers with late or no prenatal care, by race and Hispanic origin of mother: Virgin Islands, Guam, Northern Marianas, and Hawaii, 1994-2004 [By place of residence] Percent late/1 or no care Percent beginning care in first trimester Non- Territory/State All Hispanic All Non-Hispanic and year races/2 White Black Hispanic races/2 White Black Hispanic Virgin Islands 2004 64.0 77.1 62.6 60.7 9.1 * 8.0 13.8 2003 63.4 76.0 60.5 65.8 11.4 * 12.4 9.4 2002 64.0 77.1 63.5 59.8 10.5 * 9.6 13.3 2001 65.6 81.0 66.4 59.5 8.6 * 8.1 10.6 2000 63.8 80.5 63.3 60.2 10.4 * 9.9 11.3 1999 59.6 73.5 59.0 57.5 11.7 * 12.2 8.7 1998 59.3 76.6 57.9 55.0 12.8 * 13.4 11.8 1997 56.9 80.0 56.3 53.2 10.9 * 10.9 11.3 1996 55.4 76.3 54.3 52.6 11.6 * 11.6 14.8 1995 56.0 ------14.9 ------1994 55.7 ------13.4 ------Guam 2004 60.4 86.0 74.1 74.5 13.5 * * * 2003 62.2 86.7 91.4 87.0 12.0 * * * 2002 61.2 89.1 89.5 73.6 12.7 * * * 2001 64.0 89.4 86.5 72.0 12.2 * * * 2000 62.6 87.9 81.8 80.5 13.1 * * * 1999 61.8 87.8 79.2 73.3 14.0 * * * 1998 63.0 86.8 81.4 83.7 12.7 * * * 1997 64.2 86.3 87.5 78.0 12.7 * * * 1996 66.7 80.1 78.4 78.0 11.0 * * * 1995 70.1 ------9.4 ------1994 66.4 ------8.0 ------Northern Marianas 2004 33.3 ------27.6 ------2003 29.9 ------27.8 ------2002 30.4 ------24.4 ------2001 30.1 ------25.8 ------2000 24.8 ------29.4 ------1999 30.2 ------25.7 ------9-31

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1998 26.3 ------34.7 ------1997 ------1996 ------1995 ------1994 ------Hawaii 2004 81.8 85.2 87.4 80.2 3.7 3.0 * 3.0 2003 82.4 86.3 89.1 80.8 3.6 1.9 * 3.0 2002 83.9 89.1 94.7 82.5 3.5 2.2 * 3.2 2001 84.2 89.2 92.3 83.3 3.8 2.6 * 3.2 2000 85.5 90.0 90.6 84.0 3.0 2.1 * 3.3 1999 85.7 91.7 90.7 83.8 2.9 1.9 * 3.2 1998 85.4 90.9 91.9 83.5 3.1 2.0 * 3.7 1997 83.4 89.9 89.6 82.0 4.6 2.9 * 3.9 1996 84.2 89.6 87.0 83.6 3.5 1.8 * 3.0 1995 83.7 ------3.6 ------1994 84.3 ------3.1 ------Data not available. * Figure does not meet standards of reliability or precision. 1 Care beginning in the 3rd trimester. 2 Includes races other than white and black. NOTE: American Samoa does not report prenatal care. Northern Marianas does not report Hispanic origin.

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Table 9.10: Rate of cesarean delivery and number and percentage of births delivered low birthweight and very low birthweight: Virgin Islands, Guam, American Samoa, Northern Marianas, and Hawaii, 1996-2004 [By place of residence]

Births delivered Rate of Very low Territory/State cesarean Low birthweight birthweight and year delivery Number Percent Number Percent Virgin Islands 2004 25.1 179 11.4 32 2.0 2003 26.6 164 10.8 37 2.4 2002 23.4 193 11.8 32 2.0 2001 25.2 161 9.7 29 1.7 2000 23.1 142 9.1 35 2.2 1999 22.7 168 10.1 41 2.5 1998 22.7 165 9.2 36 2.0 1997 22.8 164 8.1 41 2.0 1996 22.4 142 7.5 39 2.0 Guam 2004 27.0 289 8.5 48 1.4 2003 24.4 301 9.2 45 1.4 2002 20.6 255 8.0 28 0.9 2001 21.8 287 8.1 33 0.9 2000 18.0 287 7.8 37 1.0 1999 16.6 314 7.8 26 0.6 1998 14.7 328 7.6 33 0.8 1997 15.8 306 7.1 34 0.8 1996 15.1 304 7.2 32 0.8 American Samoa 2004 --- 57 3.3 4 * 2003 --- 67 4.2 10 * 2002 --- 64 3.9 6 * 2001 --- 65 3.9 9 * 2000 --- 47 2.7 5 * 1999 --- 62 3.6 8 * 1998 --- 51 3.0 11 * 1997 --- 53 3.2 5 * 9-33

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1996 ------Northern Marianas 2004 21.1 102 7.6 9 * 2003 20.3 103 7.6 9 * 2002 24.8 89 6.9 7 * 2001 23.7 120 8.3 7 * 2000 20.4 114 8.9 12 * 1999 14.9 107 8.2 14 * 1998 17.1 110 8.6 9 * 1997 ------

Table 9.10 cont. 1996 ------Hawaii 2004 24.2 1,442 7.9 242 1.3 2003 22.0 1,554 8.6 252 1.4 2002 21.4 1,450 8.3 266 1.5 2001 20.1 1,385 8.1 206 1.2 2000 14.7 1,308 7.5 210 1.2 1999 13.8 1,280 7.6 210 1.2 1998 15.6 1,284 7.5 231 1.4 1997 16.7 1,235 7.2 186 1.1 1996 17.5 1,330 7.3 196 1.1 --- Data not available * Figure does not meet standards of reliability or precision.

Table 9.11: Number of deaths, death rates, and age-adjusted death rates for major causes of death for Virgin Islands, Guam, American Samoa, Northern Marianas, and Hawaii, 1994-2004 9-34

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Age- Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate

Human immunodeficiency Virgin Islands virus Malignant neoplasms Diabetes mellitus ICD-10: All causes disease (HIV) (B20-B24) (C00-C97) (E10-E14) 2004 626 575.5 693.6 4 * * 122 112.2 128 35 32.2 39.5 2003 631 579.9 717.7 8 * * 111 102.0127.4 34 31.2 37.4 2002 617 567.0 734.3 7 * * 129 118.6147.1 26 23.9 33.1 2001 605 556.3 751.6 3 * * 114 104.8142.6 31 28.5 41.1 2000 641 530.1 730.6 3 * * 132 109.2153.2 24 19.8 28.3 1999 659 550.9 805.2 10 * * 117 97.8 147.9 40 33.4 52.7 Malignant neoplasms, including Human immunodeficiency neoplasms of lymphatic and ICD-9: virus infection hematopoietic tissues Diabetes mellitus All causes (*042-*044) (140-208) (250) 1998 615 519.5 453.0 4 * * 122 103.1 87.6 45 38.0 32.4 1997 620 541.8 474.4 17 * * 119 103.9 86.7 37 32.3 27.9 1996 575 507.7 458.4 18 * * 104 91.8 83.2 38 33.6 29.6 1995 664 ------24 ------118 ------43 ------1994 602 ------30 ------107 ------31 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate Rate

Virgin Islands Alzheimer's disease Diseases of heart Cerebrovascular diseases Influenza and pneumonia ICD-10: (G30) (I00-I09, I11, I13, I20-I51) (I60-I69) (J10-J18) 2004 9 * * 170 156.3 199.2 50 46 58.3 12 * * 2003 9 * * 181 166.3 209.3 44 40.4 51 11 * * 2002 3 * * 190 174.6 238.6 41 37.7 49.8 16 * * 2001 7 * * 172 158.2 228.6 47 43.2 61.4 9 * * 2000 6 * * 203 167.9 237.5 52 43.0 66.8 11 * * 1999 7 * * 181 151.3 235.4 38 31.8 52.1 13 * *

ICD-9: Alzheimer's disease Diseases of heart Cerebrovascular diseases Pneumonia and influenza (331.0) (390-398,402, 404-429) (430-438) (480-487) 1998 2 * * 179 151.2 127.3 37 31.3 25.6 13 * * 1997 5 * * 156 136.3 111.3 51 44.5 37.0 16 * * 9-35

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1996 3 * * 147 129.8 108.6 30 26.5 23.1 13 * * 1995 4 ------161 ------51 ------21 ------1994 5 ------131 ------42 ------10 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate

Chronic lower respiratory Chronic liver disease and Nephritis, nephrotic syndrome, Virgin Islands diseases cirrhosis and nephrosis Accidents ICD-10: (J40-J47) (K70,K73-K74) (N00-N07,N17-N19,N25-N27) (V01-X59,Y85-&86) 2004 5 * * 10 * * 7 * * 28 25.7 27.5 2003 8 * * 17 * * 6 * * 21 19.3 23.1 2002 8 * * 12 * * 12 * * 26 23.9 28.1 2001 8 * * 9 * * 5 * * 40 36.8 39.6 2000 7 * * 11 * * 8 * * 28 23.2 28.3 1999 7 * * 18 * * 11 * * 41 34.3 42.8

Chronic obstructive pulmonary Chronic liver disease and Nephritis, nephrotic syndrome, ICD-9: diseases and allied conditions cirrhosis and nephrosis Accidents and adverse effects (490-496) (571) (580-589) (E800-E949) 1998 12 * * 9 * * 5 * * 37 31.3 30.9 1997 15 * * 9 * * 4 * * 36 31.4 30.9 1996 9 * * 12 * * ------33 29.1 30.3 1995 14 ------15 ------40 ------1994 13 ------18 ------45 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate

Injury by firearms (*U01.4, W32-W34,W32- Virgin Islands Motor vehicle accidents Intentional self-harm (suicide) Assault (homicide) W34,X72-X74, X93- ICD-10: (*U03,X60-X84,Y87.0) (*U01-*U02,X85-Y09,Y87.1) X95,Y22-Y24, Y35.0) 2004 14 * * - * * 37 34.0 36.8 36 33.1 35.4 2003 8 * * 9 * * 31 28.5 30.9 28 25.7 28.5 2002 12 * * 2 * * 41 37.7 39.8 36 33.1 35.2 2001 17 * * 4 * * 28 25.7 27.0 27 24.8 26.8 2000 13 * * 5 * * 23 19.0 20.2 22 18.2 19.3 9-36

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1999 12 * * 6 * * 27 22.6 24.0 16 * *

Injury by firearms (E922, E955.0-E955.4, ICD-9: Motor vehicle accidents Suicide Homicide and legal intervention E965.0- (E810-E825) (E950-E959) (E960-E978) E965.4, E970, E985.0-E985.4) 1998 21 17.7 18.0 22 18.6 21.3 25 21.1 24.2 22 18.6 21.3 1997 9 * * 24 21.0 23.5 31 27.1 30.8 24 21.0 23.5 1996 15 * * 20 17.7 19.4 23 20.3 23.4 20 17.7 19.4 1995 12 ------16 ------20 ------16 ------1994 17 ------30 ------34 ------30 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate Rate Guam ICD-10: All causes HIV Malignant neoplasms Diabetes mellitus 2004 683 411.2 686.0 3 * * 112 67.4 123.5 27 16.3 32.2 2003 680 415.7 755.8 5 * * 115 70.3 136.5 19 * * 2002 638 396.1 736.6 2 * * 118 73.3 136.1 18 * * 2001 663 418.7 789.9 3 * * 97 61.3 112.9 19 * * 2000 648 419.1 719.2 2 * * 121 78.3 140.2 21 13.6 25.0 1999 693 456.0 832.9 1 * * 102 67.1 123.0 25 16.5 33.0 ICD-9: 1998 632 423.9 480.1 2 * * 88 59.0 71.0 36 24.1 29.1 1997 615 421.9 493.3 4 * * 79 54.2 67.0 31 21.3 26.3 1996 599 413.7 489.6 2 * * 105 72.5 90.2 39 26.9 34.8 1995 592 ------5 ------92 ------29 ------1994 605 ------11 ------86 ------40 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate Guam 9-37

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ICD-10: Alzheimer's disease Diseases of heart Cerebrovascular diseases Influenza and pneumonia 2004 3 * * 217 130.7 235.7 39 23.5 39.5 8 * * 2003 8 * * 195 119.2 247.2 51 31.2 70.5 17 * * 2002 3 * * 201 124.8 253.6 49 30.4 60.4 20 12.4 23.8 2001 2 * * 204 128.8 276.1 62 39.2 87.2 17 * * 2000 - * * 172 111.2 209.2 57 36.970.3 11 * * 1999 2 * * 197 129.6 264.5 66 43.4 94.6 21 13.8 32.0 ICD-9: 1998 2 * * 150 100.6 119.5 54 36.2 42.5 23 15.4 16.9 1997 3 * * 177 121.4 150.1 50 34.3 42 15 * * 1996 2 * * 140 96.7 123 38 26.2 32.9 13 * * 1995 1 ------165 ------38 ------23 ------1994 0 ------156 ------36 ------33 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate Guam ICD-10: Chronic lower respiratory dis. Chronic liver dis. & cirrhosis Nephritis, neph syn, nephrosis Accidents 2004 20 12 26.9 11 * * 22 13.2 22.5 53 31.9 37.4 2003 19 * * 18 * * 18 * * 46 28.1 34.8 2002 27 16.8 44.5 12 * * 12 * * 31 19.2 21.8 2001 22 13.9 34.3 10 * * 15 * * 45 28.4 36.5 2000 22 14.2 28.7 13 * * 11 * * 40 25.9 30.9 1999 30 19.7 42.5 23 15.1 20.6 18 * * 39 25.7 30.0 ICD-9: 1998 32 21.5 25 18 * * 7 * * 51 34.2 36.9 1997 23 15.8 19.8 11 * * 5 * * 49 33.6 37.7 1996 18 * * 13 * * ------46 31.8 34.5 1995 16 ------16 ------63 ------1994 21 ------16 ------51 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate Guam 9-38

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ICD-10: Motor vehicle accidents Intentional self-harm (suicide) Assault (homicide) Injury by firearms 2004 19 * * 16 * * 8 * * 6 * * 2003 21 12.8 15.1 21 12.8 12.2 7 * * 3 * * 2002 12 * * 21 13.0 13.2 1 * * 1 * * 2001 20 12.6 14.2 23 14.5 13.8 8 * * 8 * * 2000 22 14.2 16.8 29 18.8 18.9 3 * * 6 * * 1999 27 17.8 19.6 36 23.7 25.2 10 * * 8 * * ICD-9: 1998 30 20.1 22.1 32 21.5 24.8 12 * * 13 * * 1997 24 16.5 18.2 28 19.2 21.6 11 * * 16 * * 1996 16 * * 31 21.4 22.8 15 * * 18 * * 1995 29 ------22 ------8 ------10 ------1994 26 ------22 ------11 ------11 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate American Samoa ICD-10: All causes HIV Malignant neoplasms Diabetes mellitus 2004 286 493.9 1,352.2 - * * 36 62.2 190.4 28 48.4 155.9 2003 256 442.6 1,209.7 - * * 35 60.5 207.2 30 51.9 159.9 2002 290 502.5 1,467.9 - * * 34 58.9 187.9 31 53.7 159.7 2001 239 415.4 1,229.5 - * * 34 59.1 147.2 21 36.5 134.4 2000 219 334.6 742.2 - * * 32 48.9 106.2 28 42.8 93.7 1999 246 385.7 832.8 - * * 39 56.4 132.2 22 34.5 96.4 ICD-9: 1998 243 391.3 521.6 - * * 38 61.2 88.5 21 33.8 49.5 1997 257 425.6 599.1 - * * 38 62.9 95.6 23 38.1 59.9 1996 ------1995 ------1994 ------

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Samoa ICD-10: Alzheimer's disease Diseases of heart Cerebrovascular diseases Influenza and pneumonia 2004 - * * 45 77.7 241.9 23 39.7115.8 4 * * 2003 - * * 40 69.2 234.0 22 38.0165.8 8 * * 2002 - * * 54 93.6 307.1 21 36.4128.8 11 * * 2001 - * * 51 88.7 318.9 19 * * 4 * * 2000 1 * * 44 67.2 157.6 9 * * 8 * * 1999 - * * 45 70.6 166.1 15 * * 3 * * ICD-9: 1998 - * * 50 80.5 117.3 17 * * 9 * * 1997 - * * 54 89.4 132.6 24 39.758.9 5 * * 1996 ------1995 ------1994 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate American Samoa ICD-10: Chronic lower respiratory dis. Chronic liver dis. & cirrhosis Nephritis, neph syn, nephrosis Accidents 2004 14 * * - * * 5 * * 11 * * 2003 9 * * 1 * * 12 * * 15 * * 2002 14 * * 1 * * 9 * * 18 * * 2001 9 * * 3 * * 7 * * 14 * * 2000 9 * * - * * 5 * * 15 * * 1999 12 * * 2 * * 7 * * 19 * * ICD-9: 1998 14 * * - * * 6 * * 15 * * 1997 17 * * 3 * * 3 * * 13 * * 1996 ------1995 ------1994 ------

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Samoa ICD-10: Motor vehicle accidents Intentional self-harm (suicide) Assault (homicide) Injury by firearms 2004 - * * 4 * * 4 * * 1 * * 2003 2 * * 7 * * 2 * * 3 * * 2002 3 * * 1 * * 10 * * 1 * * 2001 2 * * 4 * * - * * - * * 2000 2 * * 3 * * - * * - * * 1999 3 * * 1 * * 1 * * 1 * * ICD-9: 1998 3 * * 1 * * - * * - * * 1997 - * * 2 * * 2 * * 3 * * 1996 ------1995 ------1994 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate Northern Marianas ICD-10: All causes HIV Malignant neoplasms Diabetes mellitus 2004 164 209.6 1,160.1 - * * 22 28.1 206.8 19 * * 2003 142 186.5 805.1 1 * * 18 * * 11 * * 2002 161 217.6 1,057.4 - * * 19 * * 7 * * 2001 148 205.9 1,015.4 - * * 27 37.6 195.7 9 * * 2000 136 189.1 945.3 1 * * 19 * * 8 * * 1999 162 234.0 1,016.9 - * * 22 31.8 145.5 9 * * ICD-9: 1998 162 243.2 551.0 - * * 28 42 125.2 4 * * 1997 ------1996 ------1995 ------1994 ------

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Marianas ICD-10: Alzheimer's disease Diseases of heart Cerebrovascular diseases Influenza and pneumonia 2004 1 * * 23 29.4 183.4 13 * * 1 * * 2003 - * * 15 * * 12 * * 7 * * 2002 - * * 27 36.5 226.8 12 * * 3 * * 2001 - * * 23 32.0 204.5 15 * * 1 * * 2000 - * * 21 29.2 225.6 15 * * 1 * * 1999 - * * 30 43.3 283.8 11 * * - * * ICD-9: 1998 - * * 32 48.0 124.5 13 * * 4 * * 1997 ------1996 ------1995 ------1994 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate Northern Marianas ICD-10: Chronic lower respiratory dis. Chronic liver dis. & cirrhosis Nephritis, neph syn, nephrosis Accidents 2004 4 * * 5 * * 6 * * 22 28.1 30.8 2003 4 * * 3 * * 4 * * 10 * * 2002 6 * * 3 * * 5 * * 15 * * 2001 5 * * 2 * * 7 * * 6 * * 2000 3 * * 2 * * 2 * * 10 * * 1999 6 * * 1 * * 3 * * 22 31.8 29.9 ICD-9: 1998 3 * * 4 * * 1 * * 17 * * 1997 ------1996 ------1995 ------1994 ------Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate Northern 9-42

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Marianas ICD-10: Motor vehicle accidents Intentional self-harm (suicide) Assault (homicide) Injury by firearms 2004 7 * * 4 * * 1 * * - * * 2003 5 * * 4 * * 1 * * - * * 2002 4 * * 4 * * 4 * * 2 * * 2001 2 * * 12 * * 4 * * 1 * * 2000 2 * * 7 * * 5 * * 1 * * 1999 5 * * 2 * * 4 * * 1 * * ICD-9: 1998 8 * * 6 * * 1 * * 2 * * 1997 ------1996 ------1995 ------1994 ------

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate Hawaii ICD-10: All causes HIV Malignant neoplasms Diabetes mellitus 2004 9,030 715.1 623.1 23 1.8 1.8 2,088 165.3 147.8 194 15.4 13.4 2003 8,978 713.9 649.3 21 1.7 1.7 2,133 169.6 154.8 202 16.1 14.5 2002 8,801 707.0 660.6 26 2.1 2.1 1,945 156.2 145.4 204 16.4 15.2 2001 8,394 684.1 652.6 26 2.1 2.1 2,024 165.0 155.9 173 14.1 13.3 2000 8,290 703.0 666.7 27 2.3 2.2 1,943 164.8 154.0 203 17.2 16.1 1999 8,270 697.6 680.3 29 2.4 2.4 1,916 161.6 154.7 211 17.8 17.1 ICD-9: 1998 8,091 678.2 370.1 22 1.8 1.8 1,969 165.0 100.5 202 16.9 9.9 1997 7,892 665.1 374.7 36 3.0 2.8 1,846 155.6 95.5 202 17.0 10.2 1996 7,948 671.4 390.1 72 6.1 5.7 1,861 157.2 100.5 214 18.1 10.8 1995 7,633 643.1 --- 124 10.4 --- 1,856 156.4 --- 168 14.2 --- 1994 7,336 622.5 --- 130 11.0 --- 1,765 149.8 --- 156 13.2 ---

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate Hawaii 9-43

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ICD-10: Alzheimer's disease Diseases of heart Cerebrovascular diseases Influenza and pneumonia 2004 171 13.5 10.8 2,457 194.6 167.3 714 56.5 47.1 236 18.7 15.5 2003 161 12.8 11.4 2,461 195.7 176.9 752 59.8 53.9 237 18.8 16.9 2002 141 11.3 10.6 2,512 201.8 188.3 812 65.2 60.6 246 19.8 18.4 2001 122 9.9 9.6 2,310 188.3 179.5 766 62.4 59.8 207 16.9 16.1 2000 118 10.0 9.8 2,390 202.7 191.9 747 63.3 60.3 221 18.7 17.9 1999 109 9.2 9.3 2,410 203.3 198.8 762 64.3 63.2 229 19.3 19.2 ICD-9: 1998 54 4.5 1.4 2,458 206.0 100.4 658 55.2 24.1 391 32.8 13.3 1997 50 4.2 1.4 2,380 200.6 101.9 710 59.8 28.3 351 29.6 12.1 1996 61 5.2 1.7 2,445 206.6 108.4 617 52.1 24.4 334 28.2 11.9 1995 47 4.0 --- 2,326 196.0 --- 611 51.5 --- 317 26.7 --- 1994 48 4.1 --- 2,274 192.9 --- 584 49.6 --- 279 23.7 ---

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate Hawaii ICD-10: Chronic lower respiratory dis. Chronic liver dis. & cirrhosis Nephritis, neph syn, nephrosis Accidents 2004 307 24.3 21 87 6.9 6.4 164 13 11.3 390 30.9 29.2 2003 287 22.8 20.6 78 6.2 5.7 123 9.8 8.8 415 33.0 31.4 2002 265 21.3 19.7 79 6.3 6.0 136 10.9 10.1 393 31.6 30.4 2001 280 22.8 21.6 84 6.8 6.4 123 10.0 9.5 372 30.3 29.7 2000 278 23.6 22.1 86 7.3 6.8 113 9.6 9.0 343 29.1 28.3 1999 290 24.5 23.6 70 5.9 5.5 133 11.2 11.0 293 24.7 24.5 ICD-9: 1998 266 22.3 10.8 69 5.8 4.0 107 9.0 4.6 299 25.1 21.0 1997 256 21.6 10.9 60 5.1 3.7 85 7.2 3.8 355 29.9 24.1 1996 239 20.2 10.6 78 6.6 4.9 ------368 31.1 25.6 1995 242 20.4 --- 75 6.3 ------327 27.6 --- 1994 210 17.8 --- 88 7.5 ------336 28.5 ---

Territory Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. Number Death Age-adj. and year of deaths rate rate of deaths rate rate of deaths rate rate of deaths rate rate Hawaii 9-44

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ICD-10: Motor vehicle accidents Intentional self-harm (suicide) Assault (homicide) Injury by firearms 2004 142 11.2 11.2 116 9.2 9.0 31 2.5 2.4 41 3.2 3.2 2003 142 11.3 11.1 131 10.4 10.1 20 1.6 1.6 37 2.9 2.8 2002 121 9.7 9.5 120 9.6 9.5 38 3.1 3.1 36 2.9 2.8 2001 128 10.4 10.3 136 11.1 10.9 34 2.8 2.8 47 3.8 3.8 2000 129 10.9 10.7 137 11.6 11.6 35 3.0 2.9 52 4.4 4.4 1999 90 7.6 7.6 136 11.5 11.5 38 3.2 3.2 42 3.5 3.6 ICD-9: 1998 124 10.4 10.6 116 9.7 9.2 28 2.3 2.5 40 3.4 3.2 1997 141 11.9 11.4 138 11.6 11.1 48 4.0 4.2 58 4.9 5.1 1996 139 11.7 11.5 127 10.7 10.4 41 3.5 3.7 48 4.1 3.9 1995 142 12.0 --- 142 12.0 --- 58 4.9 --- 75 6.3 --- 1994 127 10.8 --- 138 11.7 --- 45 3.8 --- 79 6.7 ---

9-45

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Table 9.12: Number of infant and neonatal deaths and mortality rates: Virgin Islands, Guam, American Samoa, Northern Marianas, and Hawaii, 1994-2004 [By place of residence]

Territory/State Infant deaths Neonatal deaths and year Number Rate Number Rate Virgin Islands 2004 13 * 8 * 2003 12 * 10 * 2002 8 * 6 * 2001 13 * 11 * 2000 21 13.4 15 * 1999 18 * 3 * 1998 20 11.1 15 * 1997 26 12.9 19 * 1996 25 13.1 19 * 1995 34 16.6 25 12.2 1994 33 13.8 24 10.0 Guam 2004 40 11.73 26 7.62 2003 37 11.28 28 8.53 2002 19 * 11 * 2001 35 9.8 25 7.0 2000 22 5.8 10 * 1999 35 8.7 21 5.2 1998 34 7.9 17 * 1997 35 8.1 17 * 1996 36 8.5 23 5.4 1995 38 9.4 24 5.9 1994 41 9.3 28 6.3 American Samoa 2004 26 15.17 17 * 2003 20 12.44 14 * 2002 22 13.5 9 * 2001 14 * 8 * 2000 11 * 9 * 1999 20 11.5 16 * 1998 27 16.0 16 * 9-46

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1997 17 * 12 * 1996 ------1995 ------1994 ------Northern Marianas 2004 12 * 6 * 2003 20 12.44 14 * 2002 8 * 6 * 2001 11 * 9 * 2000 11 * 7 * 1999 8 * 7 * 1998 13 * 11 * 1997 ------1996 ------1995 ------1994 ------Hawaii 2004 104 5.69 78 4.27 2003 136 7.51 95 5.25 2002 127 7.3 83 4.7 2001 106 6.2 68 4.0 2000 142 8.1 107 6.1 1999 120 7.0 84 4.9 1998 121 6.9 89 5.1 1997 114 6.6 73 4.2 1996 107 5.8 66 3.6 1995 107 5.8 74 4.0 1994 130 6.7 76 3.9 * Figure does not meet standards of reliability/precision. --- Data not available.

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10. Data Gaps and Barriers Despite ongoing data collection efforts that seek to inform policy, interventions, and future research to achieve optimal health and well-being among the population in the insular areas, these efforts are not without shortcomings and challenges. This section presents a discussion of the data gaps and barriers identified as an outcome of the larger project, and serve as the bases for the recommendations to follow. The identified gaps are summarized into two broad categories: 1) Gaps by domain; and 2) Barriers associated with data collection in the insular areas.

Data Gaps by Domain The vast majority of data sources identified in this project were initiated with external funding from the U.S. Department of Health and Human Services’ Centers for Disease Control and Prevention (CDC), National Center for Health Statistics (NCHS), Health Resources and Services Administration (HRSA), Substance Abuse and Mental Health Services Administration (SAMSHA), National Institutes on Health (NIH), U.S. Census Bureau and multinational organizations including the World Health Organization (WHO), and the Secretariat of the Pacific Community (SPC). The funding agencies approach these health projects from a perspective that is consistent with the overall mission of the organization and the research designs aim to maximize the use of funding by focusing on a specific set of health issues such as maternal and child health, infectious and non-communicable diseases, mental health and substance abuse, oral health or wellness programs. As a consequence of this variability in mission and research design, these data collection designs exist independently from each other and typically lack comparability in question text across countries. While a thorough harmonization of data collection approaches and questionnaire instruments is not a reasonable goal, increased emphasis on the development of a comparable set of core questions on demographic, socioeconomic and health issues would greatly enhance the value and usability of these data across the Pacific and Caribbean region.

Similarly, while data collection on specific diseases, age groups and gender are useful for health surveillance purposes and to some extent local policy and interventions, however it becomes difficult to obtain a coherent epidemiological profile of the overall health of the population and the individuals who make it as they progress through the lifecourse. The small population size, limited sampling frames and the use of convenience samples drawn from clinics, church groups and other social organization potentially capture specific respondents multiple times. Although this approach may generate a variety of information on a specific individual or event, the data are not systematically linked together. Further the current approaches raise questions regarding generalizability and the introduction of systematic bias into the sample design that cannot be adequately addressed with the information currently available. These factors severely limit the ability of local leaders and health advocates build comprehensive health histories for individuals within the community of interest despite the presence of multiple programs that address different aspects of community health. The lack of routine collection of baseline measures on the health and well-being of insular area populations is a major deficit to effective planning and monitoring purposes. There is a clear need to conduct national health surveys on a routine if not annual basis but significant barriers will need to be overcome before this goal becomes practical.

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There are also clear weaknesses in the variety of health topics being supported by external funding in the insular areas. Figure 10.1 summarizes the domain of the specific data sources identified through face-to-face meetings with Program Coordinators and Public Health leaders. As is apparent from the figure, the majority of data collection efforts for the insular areas focus predominately on studies of disease or injury (23 percent) related processes that are captured in medical encounter records, followed by studies that are useful to addressing aspects of health policy (19 percent). While both of these domains are important, the insular areas lack reliable intercensal estimates of the population size for basic demographic elements such as age or gender. The collection of disease and injury information in surveys and on health reports only provides estimates of incidence. Without annual population denominators there is no systematic way to measure the prevalence of any specific disease or injury process across the broader population. Equally surprising is a rather low prevalence of demographic studies which would help better understand the population dynamics that drive the growth of at risk populations within the insular areas. It does need to be recognized that many of these resources either exist or could be generated with existing resources. Like the United States proper, the areas routinely perform census enumerations and they all collect vital statistics data to some degree. If these basic resources could be more freely accessed by qualified researchers then the generation of intercensal estimates, and prevalence rates becomes straightforward. The routine practice of actively using existing population data resources would also provide researchers with important information regarding potential weaknesses and sources of error in their data collection efforts, leading to more sophisticated approaches and better data to use in policy development.

Figure 10.1 also shows that data on infants and children dominate collection efforts. This is to be expected considering the young age structure and large family size common to the insular areas, it also seems appropriate at the present time as infant mortality is a core concern across the pacific region. In contrast, data on youth and adolescent well-being as well as maternal and women’s well-being reflect less emphasis which may be problematic as both these area offer well defined risks for morbidity, mortality and risk taking behaviors. Far less common are studies on family well-being, elder well-being, paternal well-being and men’s well-being. These areas of weakness reflect long standing patterns seen in research throughout the developing world and ignore our growing understanding of the integrated role that families and males play in the overall functioning of the household unit. While rare it was gratifying to see that some projects addressed issues of aging and the elderly in the insular areas. Although not a critical issue at this time, increased life-expectancy and population aging will require greater attention to the midlife and elderly lifecourse. Of more immediate concern are the impacts of the high rates of chronic diseases such as hypertension and diabetes found in the islands but as longevity increases concerns over frailty and age-related disability concerns will also increase. Data on health services and administration, family well- being and paternal health and men’s well-being should be seen as greater priority whenever possible as health and socioeconomic success is often the result of family efforts as opposed to the individual outcomes that are currently measured in most studies.

The stages involved in data collection and processing are typically conducted locally using a variety of storage and management approaches. The data recording technique ranges from the simple recording of data as journal entries in log books and transcribed encounter records to more complex

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approaches that enter information into customized computerized databases designed specifically for one particular health program. As a result the insular areas have multiple databases that reside on a wide array of paper storage mediums, as well as various computer software programs and operating systems. Frequencies of the data are commonly generated internally within the insular areas for basic reporting purposes and in some cases the data is sent back to the funding agency of record for more detailed analysis, archival and reporting purposes. If the data entry and data management systems could be more closely integrated across studies, with a specific focus on the need to computerize all data processing systems this alone would provide a tremendous benefit to research capacity within and across the insular areas leading to more flexible and responsive policy development. Similarly, the investment in local data preservation and analysis would greatly enhance this development as well as empowering local stakeholders and encouraging greater collaboration between local researchers, health professionals and U.S. federal agencies.

Table 10.1: Percentage of Data Sources by Domain 25%

20%

15%

10%

c g g i ng ild n n ph eing i a b bei ch be ation r l- policy - r ll- l h & ll ist e lt mog we we e y fant 's well-bei t care services min D l Hea In n n h d Disease/Injury e e lt a Elder w mi m sc th Fa o le l o Hea d Hea & w al & a rn th te Paternal & men's well-beingou Ma Y

Barriers to Data Collection, Processing and Analysis

The types of data collected in the insular areas varied widely from formal sample survey designs to administrative and vital record collection to demonstration projects; similarly wide variation was found in the research frameworks that were used to identify potential samples, contact respondents, and administer surveys or data collection efforts. Both qualitative and quantitative approaches were employed

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within different research frameworks, generating a body of data resources that varied from encounter based in convenience sample data drawn from participants in specific health programs and services, registration data collected for vital events, population based surveys, as well as disease incidence data captured through disease-specific registries.

Reliance on local staff to collect and process data is both practical and valuable; however data literacy among program staff varies within and across country. Like computerization of records, the issues of training and educational access are seen as central to the long term development of the insular areas and their data collection, data processing and data analysis efforts. While this can be accomplished to some extent through the external training of select individuals at U.S. based institutions, as well as through the use of need-base consultants and targeted seminars within the insular areas that represent short term solutions at best. Long term planning suggests the development of community college health education programs to promote data literacy and strengthen curriculum in statistics, survey research and data management. Such an investment would also provide a two-fold benefit in both encouraging students in the insular areas to apply to these institutions but also more importantly increasing the likelihood that students once trained would apply their knowledge within the areas increasing the human capital of the region.

Our inventory of locally-collected data resources and health information presented in Sections 4, 5 and 6 combined with interviews and group discussions with health providers also identified problems related to the access, storage, and preservation of research data once the collection period was completed. Many of these problems were typical of developing countries with limited information technology infrastructures and extremes in temperature such as high humidity, heavy rainfall, and lack of climate controlled office environments. The majority of the information identified that seem to present the most potential research value to a better understanding of health patterns within the community consisted of hand-entered medical and public health encounter records tracked as journal entries and stored on paper. This approach is time consuming, especially when these records are later used in preparation of summary reports and descriptions of potential health concerns. The labor-intensive aspect of producing tabulations by hand and performing other kinds of analysis is prone to a number of potential human errors including typographical errors, duplication of entries, the omission of information, and mathematical inconsistencies. The use of paper records as a primary storage medium also makes the process of duplication, quality control, and long-term preservation virtually impossible, particularly when faced with a situation when there is only one copy of the information in existence. A more disturbing problem is that the use of paper records alone places severe limitations on the capacity of local programs, data analysts, policy makers, and researchers to fully analyze and build on the existing data resources, no less share information collaboratively across insular areas.

Concerns were also identified in interviews and group sessions over the control and ownership of data. The access that local researchers and policy makers have to the data resources emerging from the insular areas after the research is concluded is at best limited and far more often nonexistent. Often after data collection is concluded, the raw data is sent directly to the funding agency or research institution for processing, and only printouts of frequencies are shared with program coordinators and public health officials in the insular areas. Data obtained by HHS agencies will frequently become part of broader

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national health reports or become separate fact sheets to inform the general public on health issues, and occasionally the results would appear as a published article in peer-reviewed publications.

Strict federal guidelines on confidentiality and privacy issues often restrict the amount of information that can be released based upon size of the population studied. The numerically small population of most insular areas increases the risk of their data not being reported. This problem is further complicated by the lack of access to the individual level analysis files. The lack of ownership of research data is a long standing issue, making the insular areas dependent upon the funding agency for timely access to the information, reports, and tabulations they need to inform policy development and healthcare reform. Not only does this reinforce the cycle of dependency, it also leaves local planners unable to go beyond the basic descriptive statistics provided to them by federal agencies or those limited resources available to most health workers in the insular areas. The lack of control and access to original data resources negatively impacts their ability to maximize the use of existing information to build a greater understanding of the predictors, moderating factors, and projected outcomes across health issues and develop effective evidence-based policy and strategic plans. One of the core findings of this report is that useful baseline information on health and healthcare in the insular areas is lacking.

This does not mean that research is not being performed on the insular areas. A simple search of Pub-Med using the keywords “Guam” and “health” immediately identifies over 200 articles which range across topics such as youth risk behavior (Lippe et al, 2007), cancer related knowledge attitudes and behaviors (Balajadia et al, 2008), measles (Leydon et al, 2005), HIV/AIDs (Sladden, 2005), suicide (Else et al, 2007; Ran et al, 2007), contraceptive use (Bensyl et al, 2005) and Amyotrophic lateral sclerosis (Haddock & Chen, 2003). A similar check for American Samoa finds almost 100 articles covering a similarly broad array of topics. This level of scientific productivity is to be commended but it also illustrates the barriers in gaps faced by researchers and public health providers in the insular areas. First and foremost, the majority of these articles are being generated by researchers outside of these areas. Independent investigators, academics and federal health professionals make up the majority of the authors for these articles (see Appendix B). This doesn't immediately address the issue of ownership and equitable access to the data. It is not unreasonable to speculate that some members of the public health community in the insular areas could have significantly contributed to many of these research topics and potentially created a parallel body of research using the same data sets. Lacking control or access to the analysis of data once it leaves the insular areas, researchers in the insular areas are helpless in terms of their ability to generate independent or original research using data collected specifically on the health and well-being of the communities in which they live. Collaboration between funding agencies, researchers and local health service personnel would strengthen the development of meaningful information.

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11. Recommendations

In this section, we present recommendations for improving health data and health information systems in the insular areas. These recommendations are based on the data gaps and barriers observed as part of the evaluation process as well as from personal interviews with program coordinators and leaders in select the U.S. Territories (American Samoa, Commonwealth of the Northern Mariana Islands, Guam and U.S. Virgin Islands), and the Freely Associated States (Federated States of Micronesia, Republic of the Marshall Islands and Republic of Palau). The purpose of this section is to provide guidance to ensure that the insular areas are equipped with a robust health information system that supports achieving optimum health and healthcare services locally. The recommendations are presented in four categories: 1) Data collection and processing; 2) Data Analysis and Dissemination; and 3) Data Management and Preservation.

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Data Collection and Processing

A. DOI should seek support for the implementation and routine administration of a National Health Survey, as well as a Hospital/Community Health Center Discharge Survey in the U.S. Territories—American Samoa, Commonwealth of the Mariana Islands, Guam, and the U.S. Virgin Islands.

Having baseline data and information on the overall health and well-being of the population, as well as health services in the U.S. Virgin Islands and U.S. Pacific Territories is essential to the development of Healthy People objectives, meaningful interventions, and optimal healthcare. It is difficult, if not impossible, to target specific needs and plan guided policy if there is no metric to evaluate the comparative level of health and healthcare indicators in relation to similar areas and federal goals such as Health People 2000 and 2010.

One of the potential strengths that the territories have in terms of the development of national health surveys is the well established and ongoing relationship that DOI has with federal agencies such as HHS and DOC. These organizations are leaders in the development of survey designs and repeat measure studies such as the National Health Interview Survey (NHIS), Hospital Discharge Survey and Census. Of the available studies the NHIS seems the most logical choice for the insular areas to use in modeling a health survey relevant to their needs. There are a number of clear attractions to this approach, not the least of which are the availability of trained professionals who could advise and guide in the development of such an endeavor and the ability to use pre-existing questions from the NHIS to generate health measures that are directly comparable to those obtained for the United States as a whole. If a study modeled after the NHIS were to be fielded throughout the Territories, then comparisons of health measures and key socio-economic and demographic variables could be looked at cross-nationally to identify variations in health as a whole and as individual political entities compared to the health of the populations measured within the United States. This kind of information has powerful policy implications as health disparities could be measured correctly using common variables and the validated set of metrics that have been used in the United States since the late 1950s.

B. DOI should work with HHS to develop and implement a strategy for agencies to collect comparable and culturally meaningful data on the U.S. Territories and Freely Associated States.

Data harmonization is essential for drawing comparisons and measuring change in health outcomes within and between U.S. Territories, Freely Associated States and the United States.

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C. DOI should help in the support the implementation and routine administration of the Vital Statistics Systems in the U.S. Territories.

Vital statistics data are essential components of the U.S. Public Health System and represent the foundation of public policy and public debates. It is therefore essential that the vital registration program be adequately equipped to process as well as maintain accurate records on vital events.

D. DOI is encouraged to negotiate agreements with HHS to assess and provide recommendations that could strengthen the vital statistics systems in the Freely Associated States.

An additional benefit of this report is in the potential implications for the vital statistics systems in the Freely Associated States (Federated States of Micronesia, Republic of the Marshall Islands, and the Republic of Palau). As these areas are solely responsible for processing and maintaining their own vital events an assessment similar to one presented for the US Territories is currently impossible. The current evaluation could potentially serve as a template for structuring both the content and the accessibility of vital statistics in the Freely Associated States. Similarly, the recommendations made for the U.S. Territories could offer guidance in strengthening their independent vital statistics system. A long term benefit to such a process could include the development of comparable systems between the Territories and the Freely Associated States that would improve the tracking of vital events across the pacific region. It is well established that high levels of migration exist between the U.S. territories and Freely Associated States ensuring that vital events such as births and deaths are often experienced when an individual is outside their place of normal residence for medical treatment, visiting relatives or other reasons. Within the US system this kind of behavior can be tracked as place of origin is identified for all births and deaths occurring in the United States and its territories. Across independent governments such as in the case of the Territories and the Freely Associated States, these linkages cannot be made and there is substantial room for reporting error. Building more comparable systems across these political entities could assist in a better understanding of the health of these populations as well as the socioeconomic interrelations they share.

E. DOI should develop a strategy for ensuring that ALL health data collected in the U.S. Territories are adequately supported by an integrated and easily maintained database system.

Data that is maintained in electronic mediums introduce specific efficiencies in terms of storage and long term preservation. This approach also offers numerous benefits such as the facilitation of reporting of periodic health outcomes, the ease of access to existing information, and greater accessibility for analytical research and policy development.

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F. DOI should facilitate through NCHS the development of a 5-year vital statistics technical assistance and training program for the territories.

A core goal of this partnership should be the development of certification programs and coursework that focuses on the needs of the insular areas. Programs geared towards addressing clearly defined weaknesses in current training and educational curriculum would enhance the development of skills that emphasize the best science related to registration methods and practices associated with the collection of administrative health data. The need for this kind of specialized training was repeatedly mentioned in face-to-face discussions with the investigators of this project. Program managers and public health providers felt they could benefit from additional training in domains such as statistical analysis (especially small-area analysis), and data dissemination. They also expressed an interest in public health certification that would help them both maintain and update their existing skills in these areas. Providing focused training would enhance skills and allow for the cross-agency leveraging of resources. The improvement of the statistical capacities of the staff would encourage other agencies more readily share related information for analysis as both parties would benefit from the exchange. Similarly, the investment in focused education among professionals and health care providers in the insular areas could prove to be a mechanism to initiate cross-island collaborations and learning opportunities. The gubernatorial and public health leaders emphatically expressed their belief that, given the proper guidance and opportunities, their staff had the capacity to become better collectors, processors, analyzers, and disseminators of data. The leadership of Guam best phrased this belief with the following statement: “Teach us to fish and we can and will do it. We do not need to always rely upon consultants and researchers who may not have the best interest of Guam in mind.” As the territories strengthen their vital statistics systems over the 5 year training period, DOI and key federal agencies could begin to facilitate their full participation in programs such as the NCHS Vital Statistics Cooperative Program, the Social Security Administration’s Enumeration at Birth Project, and in any other federal program that may provide financial assistance in the ongoing support of their vital statistics system.

Data Analysis and Dissemination

Data collection efforts represent a valuable resource for making informed decisions and developing meaningful interventions to improve the livelihood, safety and conditions of the people and areas that that the data was derived from. It is essential that the results be summarized and presented in a manner that is understandable to the local people and relevant to the area of study.

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H. DOI should work with HHS-NCHS and DOC-Census Bureau to calculate and disseminate intercensal estimates, as well as age, race, and ethnicity-specific life tables for the Territories.

Life tables and intercensal estimates of the Territory populations are not presently calculated for these areas. The lack of this basic demographic tool prevents the computation of prevalence rates and other basic indicators of fertility, mortality and health indicators among the insular populations by age and race/ethnicity.

I. DOI should support the development of community college/university health administration and public health tracks in the insular areas which promote data literacy.

The promotion of data literacy is essential to any long term gains in addressing public health concerns. While many of the insular areas lack universities or large research institutes, many do have community colleges which could provide invaluable training in the statistical use of data. While it is common for public health workers, physicians, nurses, and other professionals to attend short training courses in research design and procedures, the long-term impact of short courses is difficult to evaluate. Similarly, researchers who received their training overseas or in the United States may be less likely to return to their area of origin due to underemployment, low pay scales, or a lack of access to information that would challenge their skills. Fully supported and staffed programs in statistics, research design, and the analysis of data as part of local community college curriculums would benefit the ability of insular areas to make the best use of existing data. This is dependent, of course, on the presence of data, which continues to represent the core problem faced by the insular areas.

J. DOI should support advance training in statistics, research methods, data analysis, and data management between the territories and U.S. agencies, as well as institutions for higher learning.

Health professionals, analysts and researchers in the territories should be encouraged to develop skills in the research and analysis areas identified in the report so that they can perform the data analysis functions, present and write up the results locally. It is essential to increase the pipeline of Pacific Islander researchers based in the territories.

K. DOI should support a more holistic capacity building program such as WHO’s Health Metrics Network.

The more rounded and complete the training and education local health professionals and researchers receive, the more capable they will be in performing independent analysis of existing data resources and in the development of new data resources. To the extent practical, education and training should be tied

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to degree and credit-granting programs, which in turn need to be integrated into systems that lead to job advancement and equitable pay scales. External training and educational resources should build, rather than bypass, local educational capacity. It is imperative that the needs of the community have priority in the development of training in order to maximize the potential impacts of these educational opportunities.

L. DOI should support the generation of an ongoing series of annual reports based on key health indicators for the insular areas.

Due to their small population size, data and information on the insular areas are limited. The number of cases from most data collection efforts in the insular areas does not meet the confidentiality and protection of identities of respondents criteria enforced by HHS and the DOC for US statistical data publications. According to agency reports, the results for the insular areas are often presented as a “dot, dash or asterisk”. Preparation of annual reports featuring key health indicators for the insular areas in comparison to results on select U.S. states and the Pacific Islander American population would prove to be a tremendous benefit to the insular areas and U.S. statewide.

M. DOI should support the production of the Pacific Global Health Publication.

The Pacific Global Health Journal is the leading publication on health for the insular areas and it is widely read among health professionals, researchers and scholars throughout the Pacific region and the United States. The publication offers excellent opportunities for Pacific Islanders to engage in scientific health research and preparation of peer reviewed manuscripts.

N. DOI should periodically support national conferences on health and improvement of data collection, analysis, and dissemination on the insular areas.

There should be an ongoing program to initiate and maintain a program of periodic conferences held at fixed intervals (perhaps every other year). These conferences should be devoted to the exchange/promotion of research findings about health issues in the insular areas and scientific discussions on enhancing research methods for island populations. Planning for periodic events as opposed to a single conference, allows for not only collaborations and partnership building between the insular areas, Federal agencies, States and U.S. institutions, but also the capacity to address specific themes, emerging issues and the reinforcement of ongoing research concerns.

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Data Management and Preservation

O. DOI should provide routine support for the development and maintenance of Health Information Systems in the territories—American Samoa, Guam, Commonwealth of the Northern Mariana Islands, and U.S. Virgin Islands, as well as the Freely Associated States—Federated States of Micronesia, Republic of the Marshall Islands, and Republic of Palau.

Ongoing assistance should be provided to the insular areas to guide them in effectively budgeting funds for the routine maintenance and upgrading of IT hardware and software systems. The initial purchase of new hardware and software for this recommendation is a starting point which will bring the computer infrastructure of insular areas up to current standards of data entry and analysis but without ongoing maintenance and upgrading of equipment this infrastructure will quickly become strained and incompatible with external systems. The maintenance and improvement of data systems is most economically managed when it is planned in specific cycles of upgrades and replacement.

P. DOI should negotiate agreements with HHS to develop a data sharing strategy of data collected in the U.S. Territories.

Ownership of data collected on the insular areas was a cited as a concern in face-to-face interviews. Agencies are encouraged to develop a data sharing program that allows the insular areas to receive copies of datasets based on the territories and Freely Associated States.

Researchers and planners both inside and outside the insular areas who seek to address the needs and concerns of these regions need to have equitable access to data collected with taxpayer dollars. The quality of the data needs to be evaluated, errors and inconsistencies need to be addressed, commonalities need to be identified, and existing data needs to be analyzed and reported so we can learn from the investment of time, energy, talent, and tax-payer dollars. There has been a growing recognition of the unrecovered costs associated with research data collected with federal funds that is never shared with the broader research community. In response to this concern, both the National Science Foundation and the National Institutes of Health have established guidelines that require data preservation and data sharing plans that are formal elements of all grant applications to these agencies. Many federal agencies that do primary data collection, such as CDC, NCHS, and the Census Bureau, have a long standing practice of providing and promoting the use of their research data in public use formats that allow for independent research without compromising the confidentiality of research subjects in these studies. Both of these approaches have resulted in a flood of original research from investigators who obtained secondary access to data collections in the public domain, often through centralized government distribution centers such as the NCHS and Census websites or from data repositories such as ICPSR. Extensive experience in data sharing argues persuasively that research data can be safely distributed to the broader community for responsible analysis, the generation of new knowledge and a deeper understanding of the population studied.

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Q. DOI should support the archival and preservation of data on the insular areas.

Increasingly, data collected with federal funds must have a data preservation plan as an integral aspect of the data collection effort. These requirements have resulted in both a significant reduction in the loss of research data due to neglect or outdated storage mediums and the benefit of having more data available for research and replication. Currently, data collected in insular areas has no such process by which data is archived and preserved and, in fact, it is quite difficult to identify the exact number of studies which have be fielded in the U.S. Territories and Freely Associated States. Preservation and the controlled use of data, even those representing relatively small geographic areas, offer benefits to the population of interest that far outweigh any minimal risks to confidentiality. The archival process not only insures the long-term protection and storage of research data, surveys, and administrative data, but it also provides invaluable opportunities to increase our understanding of understudied populations. The archival process is a science, not to be undertaken lightly. Organizations such as the Inter-university Consortium for Political and Social Science (ICPSR) at the University of Michigan have a long history in leadership in the science of electronic data preservation data, protection, and controlled data distribution for valid research purposes (ICPSR, 2005). The process of preserving research data from the insular areas should be undertaken as a partnership with organizations that represent longstanding expertise and the infrastructure required to perform these functions. Archived data should be seen and treated as a legacy to the insular areas and an ongoing resource they and others can use for research and education. Archieved data increases the ability of the insular areas to perform guided policy research which leads to the reduction of health disparities and the improvement of overall quality of life.

R. DOI should support the development of broadband connectivity in the insular areas.

Broadband connectivity represent major positive implications for health workforce development, health services management and coordination, as well as collaboration related to Health Information Systems (HIS) in the U.S. Territories, Freely Associated States and United States.

S. DOI should support the development of Internal Review Boards (IRB) in the territories and Freely Associates States.

There is a growing need for local stakeholders to implement policies that ensure the protection and safety of respondents in the territories. While researchers operating out of US based universities and research institutions are routinely required to submit their research plan to their local IRB for review and approval. In fully evolved research organizations this process is followed regardless of the funding source or type of research if it involvs human subjects and such a review is mandatory when federal research dollars are employed for a study. The quality and consistency of the IRB process in the territories and Freely

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Associated States is not clearly defined at the present time, particularly for research originated and fielded by local researchers. While it is generally assumed that ethical researchers make all efforts to protect their human subjects from risk regardless of where they are based and where they do their work, the clear documentation of how these risks are minimized represents an essential element of the research process. Using existing programs as a foundation, the creation, training and maintenance of local IRB’s for the region represents a core part of a sustainable research system. Such a formalized system would help reinforce and ensure the ongoing protection of human subjects and offer the additional benefit of simplifying collaborative efforts between institutions based in the US and those operating in the territories or the Freely Associated States.

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REFERENCES

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Sladden T. (2005). Twenty years of HIV surveillance in the Pacific--what do the data tell us and what do we still need to know? Pacific Health Dialog: 12(2); 23-37. Srinivasan S, Guillermo T. (2000). Toward Improved Health: Disaggregating Asian American and Native Hawaiian/Pacific Islander Data. American Journal of Public Health; 90(11): 1731-34. Taylor R, Bampton D, Lopez AD. (2005). Contemporary patterns of Pacific Island mortality. International Journal of Epidemiology; 34: 207-214. U.S. Bureau of the Census. (2001). The Native Hawaiian and Other Pacific Islander Population: 2000. Census 2000 Brief. U.S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau. Washington, DC. U.S. Bureau of the Census. (2005). We the People: Pacific Islanders in the United States. U.S. Census Bureau, Census 2000 special tabulation. U.S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau. Washington, DC. U.S. DHHS (U.S. Department of Health and Human Services). (1999). Health Data Needs of the Pacific Insular Areas, Puerto Rico, and the U.S. Virgin Islands. National Committee on Vital and Health Statistics (Subcommittee on Populations). Washington, DC. http://www.ncvhs.hhs.gov/9912islandreport.pdf U.S. DHHS (U.S. Department of Health and Human Services). (2000). Healthy People 2010. 2nd ed. With Understanding and Improving Health and Objectives for Improving Health. Washington, DC: U.S. Government Printing Office. U.S. Department of Interior, Office of Insular Affairs. (1997). A Report on the State of the Islands. Available at the website http://www.doi.gov/oia/StateIsland/oia.html. U.S. Department of Interior, Office of Insular Affairs. (1999). A Report on the State of the Islands. Available at the website http://www.doi.gov/oia/StateIsland/islands.pdf. Ulin PR, Robinson ET, Tolley EE. (2004). Qualitative Methods in Public Health: A Field Guide for Applied Research. John Wiley and Sons. New York. World Health Organization (WHO). (1999). Rapid Health assessment protocol for emergencies. Geneva, 1999. World Health Organization. 1999. Geneva. Web link: www.crid.or.cr/digitalizacion/pdf/eng/doc13866/doc13866.htm World Health Organization (WHO). (2006). Health Metrics Network, Framework and Standards for the Development of Country Health Information Systems. Geneva, Switzerland. www.healthmetricsnetwork.org.

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Appendix A

WHO Health Matrix Conceptual Framework

Source: World Health Oorganization. (2006). Health Metrics Network: Framework and Standards for the Development of Country Health Information Systems. Geneva, Switzerland. www.healthmetricsnetwork.org

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Appendix B

Published Article List on the Insular Areas

1994 emergency medical services state and province survey. (1993). Emergency Medical Services, 22(12), 188- 221. 19th Annual EMS State and Province survey. (1995). Emergency Medical Services, 24(12), 206-35. Aberg, K., Dai, F., et al. (2008). A genome-wide linkage scan identifies multiple chromosomal regions influencing serum lipid levels in the population on the Samoan islands. Journal of Lipid Research, 49(10), 2169-78. doi: 10.1194/jlr.M800194-JLR200. Aberg, K., Sun, G., et al. (2008). Applying novel genome-wide linkage strategies to search for loci influencing type 2 diabetes and adult height in American Samoa. Human Biology; an International Record of Research, 80(2), 99-123. Abidi, S. M., Negrete, H. O., Zahid, I., Bennett, P. H., & Nelson, R. G. (2005). Diabetic end-stage renal disease in the indigenous population of the Commonwealth of the Northern Mariana Islands. Nephrology (Carlton, Vic.), 10(3), 291-5. doi: 10.1111/j.1440-1797.2005.00415.x. Abramowitz, S., & Greene, D. (n.d.). Ryan White CARE Act Title IV programs: a preliminary characterization of benefits and costs. AIDS & Public Policy Journal, 20(3-4), 108-25. Acute hemorrhagic conjunctivitis--St. Croix, U.S. Virgin Islands, September-October 1998. (1998). MMWR. Morbidity and Mortality Weekly Report, 47(42), 899-901. Adams, W. H., Harper, J. A., Heotis, P. M., & Jamner, A. H. (1984). Hyperuricemia in the inhabitants of the Marshall Islands. Arthritis and Rheumatism, 27(6), 713-6. Adams, W. H., Kindermann, W. R., Walls, K. W., & Heotis, P. M. (1987). Toxoplasma antibodies and retinochoroiditis in the Marshall Islands and their association with exposure to radioactive fallout. The American Journal of Tropical Medicine and Hygiene, 36(2), 315-20. Agostini, H. T., Yanagihara, R., Davis, V., Ryschkewitsch, C. F., & Stoner, G. L. (1997). Asian genotypes of JC virus in Native Americans and in a Pacific Island population: markers of viral evolution and human migration. Proceedings of the National Academy of Sciences of the United States of America, 94(26), 14542-6. Agreement on abortion unravels. Vatican criticized for tough stance at U.N. conference. (1994). Sun (Baltimore, Md.: 1837), 1A, 4A. Ahl, A. S., Miller, D. A., & Bartlett, P. C. (1992). Leptospira serology in small ruminants on St. Croix, U.S. Virgin Islands. Annals of the New York Academy of Sciences, 653, 168-71. Ahluwalia, I. B., Mack, K. A., Murphy, W., Mokdad, A. H., & Bales, V. S. (2003). State-specific prevalence of selected chronic disease-related characteristics--Behavioral Risk Factor Surveillance System, 2001. MMWR. Surveillance Summaries: Morbidity and Mortality Weekly Report. Surveillance Summaries / CDC, 52(8), 1-80. AIDS education reaches Pacific atolls. (1994). Global AIDSnews: The Newsletter of the World Health Organization Global Programme on AIDS, (3), 6.

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Aitaoto, N. T., Braun, K. L., Ichiho, H. M., & Kuhau, R. L. (2005). Diabetes today in the Pacific: reports from the field. Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 12(1), 124-31. Aitaoto, N. T., Braun, K. L., Ichiho, H. M., & Kuhau, R. L. (2005). Diabetes today in the Pacific: reports from the field. Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 12(1), 124-31. Allan, A. T., Tydingco, P., & Perez, V. (1985). Clinical aspects of cultural psychiatry on Guam. The International Journal of Social Psychiatry, 31(3), 198-204. Allotey, P., & Lazroo, C. (2004). The moral high ground: reflections on ethical dilemmas in unethical circumstances. Monash Bioethics Review, 23(4), 78-84. Alto, W. (1989). Is there a greater incidence of abdominal pregnancy in developing countries? Report of four cases. The Medical Journal of Australia, 151(7), 412, 414. Ament, L. (n.d.). Reimbursement, employment, and hospital privilege data of certified nurse-midwifery services. Journal of Nurse-Midwifery, 43(4), 305-9. Anderson, I., Crengle, S., Kamaka, M. L., Chen, T., Palafox, N., & Jackson-Pulver, L. (2006). Indigenous health in Australia, New Zealand, and the Pacific. Lancet, 367(9524), 1775-85. doi: 10.1016/S0140-6736(06)68773- 4. Armour, B. S., Campbell, V. A., Crews, J. E., Malarcher, A., Maurice, E., & Richard, R. A. (2007). State-level prevalence of cigarette smoking and treatment advice, by disability status, United States, 2004. Preventing Chronic Disease, 4(4), A86. Ashford, D. A., Savage, H. M., Hajjeh, R. A., McReady, J., Bartholomew, D. M., Spiegel, R. A., et al. (2003). Outbreak of dengue fever in Palau, Western Pacific: risk factors for infection. The American Journal of Tropical Medicine and Hygiene, 69(2), 135-40. Attaining higher coverage: obstacles to overcome. English-speaking Caribbean and Suriname. (1984). EPI Newsletter / C Expanded Program on Immunization in the Americas, 6(6), 1-2. Austin, D. (1994). Condom failure and fornication. Pacific AIDS Alert Bulletin / South Pacific Commission, (9), 13. Availability of funds to provide health services in the Pacific Basin--HHS. Notice of availability of funds. (1990). Federal Register, 55(71), 13847-8. Awareness of stroke warning signs--17 states and the U.S. Virgin Islands, 2001. (2004). MMWR. Morbidity and Mortality Weekly Report, 53(17), 359-62. Bailey, J., & Keller, A. (1982). Post family planning acceptance experience in the Caribbean: St. Kitts-Nevis and St. Vincent. Studies in Family Planning, 13(2), 44-58. Bailey, M. C., Azam, A. A., Galea, G., & Rotem, A. (2001). From policy to action: access to essential drugs for the treatment of hypertension in the Small Island States (SIS) of the South Pacific. Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 8(1), 103-9. Baker, P. T. (1996). Adventures in human population biology. Annual Review of Anthropology, 25, 1-18. doi: 10.1146/annurev.anthro.25.1.1. Balachandra, H. K. (2005). Coral stone landscape and pterygia; is there an association? Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 12(1), 81-3.

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Balajadia, R. G., Wenzel, L., Huh, J., Sweningson, J., & Hubbell, F. A. (2008). Cancer-related knowledge, attitudes, and behaviors among Chamorros on Guam. Cancer Detection and Prevention, 32 Suppl 1, S4-15. doi: 10.1016/j.cdp.2007.12.002. Balick, M. J., & Lee, R. (n.d.). The power of community. Alternative Therapies in Health and Medicine, 9(1), 100- 3. Balick, M. J., & Lee, R. (n.d.). Traditional use of sakau (kava) in Pohnpei: lessons for integrative medicine. Alternative Therapies in Health and Medicine, 8(4), 96-8. Balluz, L., Ahluwalia, I. B., Murphy, W., Mokdad, A., Giles, W., & Harris, V. B. (2004). Surveillance for certain health behaviors among selected local areas--United States, Behavioral Risk Factor Surveillance System, 2002. MMWR. Surveillance Summaries: Morbidity and Mortality Weekly Report. Surveillance Summaries / CDC, 53(5), 1-100. Barnes, S. P., Torrens, A., George, V., & Brown, K. M. (2007). The use of portfolios in coordinated school health programs: benefits and challenges to implementation. The Journal of School Health, 77(4), 171-9. doi: 10.1111/j.1746-1561.2007.00188.x. Barry, F. (1982). Mobilization of community resources to work with abusive and neglectful families: community organization in New York State. Child Abuse & Neglect, 6(2), 177-84. Bavadra, T. U., & Kierski, J. (1980). Fertility and family planning in Fiji. Studies in Family Planning, 11(1), 17-23. Beatty, M. E., Jack, T., Sivapalasingam, S., Yao, S. S., Paul, I., Bibb, B., et al. (2004). An Outbreak of Vibrio cholerae O1 infections on Ebeye Island, Republic of the Marshall Islands, associated with use of an adequately chlorinated water source. Clinical Infectious Diseases: An Official Publication of the Infectious Diseases Society of America, 38(1), 1-9. doi: 10.1086/379713. Beecher, D. M. (1983). The history of dental health in Guam. Bulletin of the History of Dentistry, 31(2), 108-12. Begnami, M. D., Palau, M., Rushing, E. J., Santi, M., & Quezado, M. (2007). Evaluation of NF2 gene deletion in sporadic schwannomas, meningiomas, and ependymomas by chromogenic in situ hybridization. Human Pathology, 38(9), 1345-50. doi: 10.1016/j.humpath.2007.01.027. Bell, T. R., Hickman, D., Yamaguchi, L., Jackson, W., & Hamilton, T. (2002). A whole body counting facility in a remote Enewetak Island setting. Health Physics, 83(8 Suppl), S22-6. Benoit, D., Guillaume, A., & Levi, P. (1984). [Levels and trends of childhood mortality in seven Asian countries]. Cahiers O. R. S. T. O. M. Série Sciences Humaines, 20(2), 207-41. Bensyl, D. M., Iuliano, D. A., Carter, M., Santelli, J., & Gilbert, B. C. (2005). Contraceptive use--United States and territories, Behavioral Risk Factor Surveillance System, 2002. MMWR. Surveillance Summaries: Morbidity and Mortality Weekly Report. Surveillance Summaries / CDC, 54(6), 1-72. Berg, B. W. (1994). Marshall Islands Medical Survey. Hawaii Medical Journal, 53(6), 160-1. Berg, B. W., Vincent, D. S., & Hudson, D. A. (2003). Remote critical care consultation: telehealth projection of clinical specialty expertise. Journal of Telemedicine and Telecare, 9 Suppl 2, S9-11. doi: 10.1258/135763303322596129. Berlioz-Arthaud, A., Kiedrzynski, T., Singh, N., Yvon, J., Roualen, G., Coudert, C., et al. (2007). Multicentre survey of incidence and public health impact of leptospirosis in the Western Pacific. Transactions of the Royal Society of Tropical Medicine and Hygiene, 101(7), 714-21. doi: 10.1016/j.trstmh.2007.02.022. Bill would require informing mothers of baby's HIV status. (1995). AIDS Policy & Law, 10(8), 1, 7.

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Bindon, J. R. (1984). The body build and composition of Samoan children: relationships to infant feeding patterns and infant weight-for-length status. American Journal of Physical Anthropology, 63(4), 379-88. doi: 10.1002/ajpa.1330630405. Bindon, J. R. (1985). The influence of infant feeding patterns on growth of children in American Samoa. Medical Anthropology, 9(2), 183-95. Bindon, J. R., & Vitzthum, V. J. (2002). Household economic strategies and nutritional anthropometry of women in American Samoa and highland Bolivia. Social Science & Medicine (1982), 54(8), 1299-308. Bindon, J. R., Knight, A., Dressler, W. W., & Crews, D. E. (1997). Social context and psychosocial influences on blood pressure among American Samoans. American Journal of Physical Anthropology, 103(1), 7-18. doi: 10.1002/(SICI)1096-8644(199705)103:1<7::AID-AJPA2>3.0.CO;2-U. Bindon, J., Dressler, W. W., Gilliland, M. J., & Crews, D. E. (2007). A cross-cultural perspective on obesity and health in three groups of women: the Mississippi Choctaw, American Samoans, and African Americans. Collegium Antropologicum, 31(1), 47-54. Bishwa, S. (2000). Fiji: AIDS education among youth at the grassroots. Pacific AIDS Alert Bulletin / South Pacific Commission, (19), 16. Block grant programs--Office of the Secretary, HHS. Final rule with comment period. (1983). Federal Register, 48(44), 9270-1. Bogen, K. T., Conrado, C. L., & Robison, W. L. (1997). Uncertainty and variability in updated estimates of potential dose and risk at a U.S. nuclear test site--Bikini Atoll. Health Physics, 73(1), 115-26. Borenstein, A. R., Mortimer, J. A., Schofield, E., Wu, Y., Salmon, D. P., Gamst, A., et al. (2007). Cycad exposure and risk of dementia, MCI, and PDC in the Chamorro population of Guam. Neurology, 68(21), 1764-71. doi: 10.1212/01.wnl.0000262027.31623.b2. Bort, S., Sevilla, T., García-Planells, J., Blesa, D., Paricio, N., Vílchez, J. J., et al. (1998). Déjérine-Sottas neuropathy associated with de novo S79P mutation of the peripheral myelin protein 22 (PMP22) gene. Human Mutation, Suppl 1, S95-8. Boyles, G., Moore, A. D., & Edwards, Q. T. (2003). Health practices of male Department of Defense health care beneficiaries: a follow-up on prostate cancer screening in the national capital area. Military Medicine, 168(12), 992-6. Bradley, P., Fisher, W. S., Bell, H., Davis, W., Chan, V., LoBue, C., et al. (2009). Development and implementation of coral reef biocriteria in U.S. jurisdictions. Environmental Monitoring and Assessment, 150(1-4), 43-51. doi: 10.1007/s10661-008-0670-2. Braun, K. L., Ichiho, H. M., Kuhaulua, R. L., Aitaoto, N. T., Tsark, J. U., Spegal, R., et al. (2003). Empowerment through community building: Diabetes Today in the Pacific. Journal of Public Health Management and Practice: JPHMP, Suppl, S19-25. Braun, K. L., Kuhaulua, R. L., Ichiho, H. M., & Aitaoto, N. T. (2002). Listening to the community: a first step in adapting Diabetes Today to the Pacific. Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 9(2), 321-8. Breastfeeding Act will aid working mothers. Commonwealth of the Northern Mariana Islands. (1987). MCH News PAC, 2(4), 9, 12. Brewis, A. A. (1992). Sexually-transmitted disease risk in a Micronesian atoll population. Health Transition Review: The Cultural, Social, and Behavioural Determinants of Health, 2(2), 195-213.

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Brindle, R. J., Eglin, R. P., Parsons, A. J., Hill, A. V., & Selkon, J. B. (1988). HTLV-1, HIV-1, hepatitis B and hepatitis delta in the Pacific and South-East Asia: a serological survey. Epidemiology and Infection, 100(1), 153-6. Brinkley, P., Haddock, R., O'Mallan, J., & Camacho, P. (2002). Guam responds to SARS. Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 9(2), 229-32. Brown, L. M., Kim, D., Yomai, A., Meyer, P. A., Noonan, G. P., Huff, D., et al. (2005). Blood lead levels and risk factors for lead poisoning in children and caregivers in Chuuk State, Micronesia. International Journal of Hygiene and Environmental Health, 208(4), 231-6. Brown, R. P. (1998). Comparative labor market performance of visaed and non-visaed migrants: Pacific islanders in Sydney. Journal of Population Economics, 11(3), 395-411. Brownson, R. C., Ballew, P., Brown, K. L., Elliott, M. B., Haire-Joshu, D., Heath, G. W., et al. (2007). The effect of disseminating evidence-based interventions that promote physical activity to health departments. American Journal of Public Health, 97(10), 1900-7. doi: 10.2105/AJPH.2006.090399. Bruss, M. B., Morris, J. R., Dannison, L. L., Orbe, M. P., Quitugua, J. A., & Palacios, R. T. (2005). Food, culture, and family: exploring the coordinated management of meaning regarding childhood obesity. Health Communication, 18(2), 155-75. doi: 10.1207/s15327027hc1802_4. Burris, S., Vernick, J. S., Ditzler, A., & Strathdee, S. (n.d.). The legality of selling or giving syringes to injection drug users. Journal of the American Pharmaceutical Association (Washington,D.C.: 1996), 42(6 Suppl 2), S13-8. Burwen, D. R., Bloch, A. B., Griffin, L. D., Ciesielski, C. A., Stern, H. A., & Onorato, I. M. (1995). National trends in the concurrence of tuberculosis and acquired immunodeficiency syndrome. Archives of Internal Medicine, 155(12), 1281-6. Cancio, L. C. (n.d.). Airplane crash in Guam, August 6, 1997: the aeromedical evacuation response. Journal of Burn Care & Research: Official Publication of the American Burn Association, 27(5), 642-8. doi: 10.1097/01.BCR.0000238097.10219.66. Carapetis, J. R., Russell, F. M., Mansoor, O., Darcy, A., Fakakovi, T., Metai, A., et al. (2004). Haemophilus influenzae type b infection in children in Pacific countries. Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 11(1), 79-83. Carter, K., Chan, J., Kuartei, S., & Alvarez, J. (2005). Disease surveillance during the VII South Pacific Mini Games, Palau 2005--lessons learnt. Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 12(2), 9-16. Cassone, B. J., Mouline, K., Hahn, M. W., White, B. J., Pombi, M., Simard, F., et al. (2008). Differential gene expression in incipient species of Anopheles gambiae. Molecular Ecology, 17(10), 2491-504. doi: 10.1111/j.1365-294X.2008.03774.x. Castiglioni, B., Rizzi, E., Frosini, A., Sivonen, K., Rajaniemi, P., Rantala, A., et al. (2004). Development of a universal microarray based on the ligation detection reaction and 16S rrna gene polymorphism to target diversity of cyanobacteria. Applied and Environmental Microbiology, 70(12), 7161-72. doi: 10.1128/AEM.70.12.7161-7172.2004. Castilla, J., Arregui, L., Baleztena, J., Barricarte, A., Brugos, A., Carpintero, M., et al. (n.d.). [Incidence of influenza and influenza vaccine effectiveness in the 2004-2005 season]. Anales Del Sistema Sanitario De Navarra, 29(1), 97-106.

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CDC advocates names, but doesn't rule out use of coded identifiers. Centers for Disease Control and Prevention. (1999). AIDS Policy & Law, 14(22), 1, 10. Chadee, D. D., Ward, R. A., & Novak, R. J. (1998). Natural habitats of Aedes Aegypti in the Caribbean--a review. Journal of the American Mosquito Control Association, 14(1), 5-11. Chaix, A., Benton, K., & Buchanan, H. (1999). MBC / UNAIDS / SPC Pacific Islands AIDS / STD strategic planning. Project update. Pacific AIDS Alert Bulletin / South Pacific Commission, (18), 8-11. Chang, L., Whittaker, N. F., & Bewley, C. A. (2003). Crambescidin 826 and dehydrocrambine A: new polycyclic guanidine alkaloids from the marine sponge Monanchora sp. that inhibit HIV-1 fusion. Journal of Natural Products, 66(11), 1490-4. doi: 10.1021/np030256t. Chen, T., Ou, A. C., Haberle, H., Miller, V. P., Langidrik, J. R., & Palafox, N. A. (2004). Smoking rates and risk factors among youth in the Republic of the Marshall Islands: results of a school survey. Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 11(2), 107-13. Choi, J. Y. (2008). Seeking health care: Marshallese migrants in Hawai'i. Ethnicity & Health, 13(1), 73-92. doi: 10.1080/13557850701803171. Chowdhury, P. P., Balluz, L., Murphy, W., Wen, X., Zhong, Y., Okoro, C., et al. (2007). Surveillance of certain health behaviors among states and selected local areas--United States, 2005. MMWR. Surveillance Summaries: Morbidity and Mortality Weekly Report. Surveillance Summaries / CDC, 56(4), 1-160. Christian, C. L., Werley, B., Smith, A., Chin, N., & Garde, D. (1994). Comparison of employees' white blood cell counts in a petrochemical plant by worksite and race. Journal of the National Medical Association, 86(8), 620-3. Clark, A. L., Howland, R., Affonso, D., & Uyehara, J. (1974). MCH in American Samoa. The American Journal of Nursing, 74(4), 700-2. Clark, L., & Shivik, J. (2002). Aerosolized essential oils and individual natural product compounds as brown treesnake repellents. Pest Management Science, 58(8), 775-83. doi: 10.1002/ps.525. Cleveland, K., Keim, M., Rich, W., & Rhyne, G. (2002). Pilot workshops at the Palau Center for Emergency Health: a model for international collaborative operations training and planning. Pacific Health Dialog: A Publication of the Pacific Basin Officers Training Program and the Fiji School of Medicine, 9(1), 7-10. Cline, N., & Palau, D. (1982). Quality circles in the recovery room: how it worked for these staff members. Nursing & Health Care: Official Publication of the National League for Nursing, 3(9), 494-6. Coin, C. G. (1987). Image transmission. CT images transmitted to U.S. boost Caribbean health care. Medical Electronics, 18(4), 74-5. Collier, A. F., McClure, F. H., Collier, J., Otto, C., & Polloi, A. (1999). Culture-specific views of child maltreatment and parenting styles in a Pacific-Island community. Child Abuse & Neglect, 23(3), 229-44. Collins, V. R., Dowse, G. K., & Zimmet, P. Z. (1991). Evidence against association between parity and NIDDM from five population groups. Diabetes Care, 14(11), 975-81. Collins, V. R., Dowse, G. K., Zimmet, P. Z., Tuomilehto, J., Alberti, K. G., Gareeboo, H., et al. (1993). Serum insulin and ECG abnormalities suggesting coronary heart disease in the populations of Mauritius and Nauru: cross-sectional and longitudinal associations. Journal of Clinical Epidemiology, 46(12), 1373-93. Connell, J. (1984). Status or subjugation? women, migration and development in the South Pacific. The International Migration Review, 18(4 Spec No), 964-83.

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