SUPPLEMENT ARTICLE

Starting Early: A Life-Course Perspective on Child Disparities—Research Recommendations

AUTHORS: DC Baltimore Research Center on Child Health The future health and well-being of America is linked to how success- Disparities Writing Group fully we manage the health and well-being of today’s children. In this ABBREVIATION report we review recommendations for a research agenda on the dis- IOM—Institute of Medicine parities that affect the health and opportunities of many children and The views and recommendations presented in the articles in this volume are those of the authors and participants and not contribute to suboptimal health in adulthood. intended to represent those of the organizations with which they On November 6–7, 2008, a multidisciplinary group of 70 researchers, are affiliated, the American Academy of Pediatrics, or the practitioners, and funders gathered in Washington, DC, to develop this funders of the conference or research. research agenda for eliminating child health disparities. The meeting www.pediatrics.org/cgi/doi/10.1542/peds.2009-1100O focused on disparities, defined as “differences in health, health care, doi:10.1542/peds.2009-1100O and developmental outcomes, particularly among racial and ethnic Accepted for publication Jul 20, 2009 minority groups.” Led by the DC-Baltimore Research Center on Child Address correspondence to Ivor B. Horn, MD, MPH. E-mail: [email protected] Health Disparities, a collaboration of Howard University, Johns Hopkins PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). University, and Children’s National Medical Center, the conference was sponsored by the National Center on Minority Health and Health Dis- Copyright © 2009 by the American Academy of Pediatrics parities, Eunice Kennedy Shriver National Institute of Child Health and FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose. Human Development, American Academy of Pediatrics, Agency for Healthcare Quality and Research, The Commonwealth Fund, Academic Pediatric Association, Lucile Packard Foundation for Children’s Health, and Robert Wood Johnson Foundation. The multidisciplinary conference planning committee reviewed exist- ing health disparities reports and, in consensus building of expert opinion, chose 9 topic areas to be discussed in 2 conference panels on conceptualization of child health disparities and solving child health disparities. Nine articles were commissioned and briefly presented at the conference with time for discussion and development of a research action agenda. The 9 articles, discussant comments, and final confer- ence recommendations make up this supplement to Pediatrics. In this summary article, we discuss our overarching definition and conceptualization of “health disparities,” which we believe should in- form future research. We also discuss 2 useful models that informed the conference and provide recommendations regarding the scope, content, and methods of child health disparities research. Finally, we present recommendations regarding the infrastructure required to conduct this research, including training and funding.

Demographic Trends in the United States Much more is understood about the state of child health disparities today than in 2003, when the Institute of Medicine (IOM) released Un- equal Treatment: Confronting Racial and Ethnic Disparities in Health Care.1 Nonetheless, significant work remains to be done, particularly when we contrast the knowledge of child health disparities with our knowledge of disparities in adult health. The reasons for this contrast are many, but the consequences of not conducting the research re-

PEDIATRICS Volume 124, Supplement 3, November 2009 S257 Downloaded from www.aappublications.org/news by guest on October 2, 2021 quired to better understand and ame- of the working-age population (18–64 characteristics of children that differen- liorate child health disparities do not years) is projected to be minority in tiate them from adults, and it ignores re- bode well for our nation. 2050 (up from 34% in 2008).6 A signifi- ciprocal impact of adult and child health 9 Throughout this article, we frequently cantly greater portion of minority chil- disparities, which collectively limit life refer to race and ethnicity; therefore, dren than non-Hispanic white children chances and burden families. For exam- we briefly present here the context in live in . For example, in 2006, ple, high rates of childhood asthma mor- which we use these terms. Growing lit- whereas only 10% of non-Hispanic bidity mean that adult caretakers take time off work, experience sleep disrup- erature suggests that race and ethnic- white children lived in poverty, 27% of tions, divert family resources into medi- ity are a sociocultural category with black and 33% of Hispanic children cal care, and experience additional little or no inherent biological or phys- bore this burden.5 Racial and ethnic sources of . Similarly, when iologic meaning, although people are minorities are disproportionately rep- adults carry heavy burdens of chronic often sorted into these categories on resented among the socially and eco- , such as type 2 diabetes and the basis of vague phenotypic crite- nomically . early stroke, their ability to be effective ria.1–3 The sociocultural definition of Previous Disparities Reports parents and grandparents becomes race and ethnicity differs across time constrained by their own health limita- and place but is often the basis for dif- There is growing scientific and popu- tions. Finally, the focus on disease and ferential treatment, including limited lar consensus regarding the existence diagnosis (or even on prevention) tends access to resources and power, that and importance of racial and ethnic to minimize the importance of broad so- can have dramatic and adverse effects health disparities, as well as diverse cial forces and socioeconomic disadvan- on health.4 efforts to address and ameliorate tage, factors that are beyond the often- Considerable heterogeneity exists both them. These efforts include publication limited biomedical focus. This narrow within and between the racial minority of the ground-breaking 2003 IOM re- focus necessarily constrains our consid- groups in the United States. Nonethe- port on health care disparities1 and eration of opportunities for intervention. less, the data on these groups make the subsequent IOM roundtable dis- CONFERENCE RECOMMENDATIONS apparent the many ways in which so- cussions in 2007,7 national health care cioeconomic adversity is admixed with disparities reports from the Agency First, we discuss our overarching def- “minority” racial status in this country. for Healthcare Quality and Research,8 inition and conceptualization of health Taken together, minority status and and the Finding Answers program sup- disparities, which we believe should in- decreased access to socioeconomic ported by the Robert Wood Johnson form future research. Second, we dis- resources can create profound social Foundation. cuss 2 useful models that informed the conference and our recommenda- disadvantage that is expressed in Although this work has been informative, tions. Third, on the basis of this under- health disparities. significant limitations exist in under- standing of health disparities, we pro- Demographic trends in the US popula- standing and addressing child health vide recommendations regarding the tion provide a backdrop for our consid- disparities. First, fewer discussions have scope, content, and methods of child focused on health disparities in children eration of child health disparities. In health disparities research. Finally, we than in adults. Notably, the original IOM 2007, the United States had almost 74 present conference recommendations ϳ million children, representing 24% report made little mention of pediatric regarding the infrastructure required of the population; this number was issues. Second, and perhaps more im- to conduct this research, including projected to increase to 80 million by portantly, when child health issues have training and funding. 2020.5 As the ratio of children to adults been raised as part of the discussion of has declined since the 1960s, the racial disparities, the approach is usually dis- Defining and Conceptualizing and ethnic diversity of children in the ease oriented and categorical (focused Health Disparities United States has increased signifi- on disparities in a condition such as Several definitions of health disparities cantly. In 2007, 57% of children were asthma or immunization rates). This ap- exist in the literature; however, the ma- non-Hispanic white compared with proach overlooks the fundamental ways jority of definitions are adult oriented 74% in the 1980s.5 By 2050, it is esti- in which disparities are created and may and approach child health disparities by mated that 62% of America’s children be sustained over the life course and using a similar framework. However, will be ethnic minorities compared transgenerationally. Equally important, previous literature has made a cogent with 44% currently.6 Furthermore, 55% it does not incorporate the unique health argument that child health is unique and

S258 HORN et al Downloaded from www.aappublications.org/news by guest on October 2, 2021 SUPPLEMENT ARTICLE distinct from that of adult health and that framework is needed when investigat- Future Research on Child Health research on child health should incorpo- ing child health disparities. A develop- Disparities: Scope, Content, and rate this perspective.9,10 Consequently, mental or life-course model and an Methods adapted from the Eunice Kennedy ecological model provide cogent para- Scope Shriver National Institute of Child Health digms for understanding the precur- We call for translational research that and Human Development, the working sors of health outcomes and dispari- addresses the need for new mechanis- definition of health disparities for the ties that occur in childhood. The tic insights, interventions, and ap- conference was “significant differences conference organizers chose the life- proaches for making established in- in health, health care, or developmental course framework as a source of terventions available to everyone. outcomes, particularly among racial and guidance for the conference to move 11 Disparities research has been re- ethnic groups.” However, through the beyond disease-oriented and cross- work of the conference, participants garded too often as the domain of psy- sectional approaches to child health proposed broadening the definition to in- chosocial and behavioral investiga- disparities. This model emphasizes the corporate the issues listed below. We tors, who are typically rooted in a development of disparities across the believe that these issues should in- public health perspective. It is our view continuum of childhood, adolescence, form future research: that basic, clinical, health-services, and adulthood. Although there contin- 1. Health disparities should be de- and community research are all ues to be debate and discussion re- needed to adequately understand and fined not simply as a difference but garding the evidence for, and value of, an inequitable difference that is po- eliminate child health disparities. This this approach, it provides a method for tentially systematic and avoidable. research will identify: considering the many transgenera- 1. Factors that create and sustain 2. Health disparities research should tional and developmental processes involve consideration of life chances, child health disparities: biological, that produce and sustain social disad- environmental, and psychosocial opportunity and risk, and quality of vantage and health disparities. life in a way that includes psychos- exposures, as well as their complex ocial and socioeconomic perspec- In addition, we recognize the need interactions, all of which require tives, as well as more traditional at- for an ecological perspective that en- investigation. tention to health status and the compasses the diverse and far- 2. Ways in which such disparities af- provision of health care. reaching biological and social sys- fect the health and well-being of tems and interactions within which 3. Health disparities should be defined, children, which includes carefully disparities are produced and sus- investigated, and ameliorated on the describing the magnitude of health basis of race and ethnicity, socio- tained. Whereas the life-course model disparities, identifying naturally oc- economic status, generation, and draws attention to developmental curring differences in response to geography, as well as their com- and transgenerational perspectives, risk factors, and tracking the ef- plex interactions. the ecological model focuses on fects of health disparities over time appreciating the complex environ- and across generations. 4. Health disparities within groups mental and extraindividual factors characterized by specific racial, eth- 3. Optimal methods for preventing, nic, and/or socioeconomic character- present at every point in time. In this addressing, or eliminating child istics require careful consideration way, these models are complemen- health disparities, which must in- and could be an important tool for tary. The conceptual model pre- clude dissemination and implemen- identifying resiliency factors. sented in Children’s Health, the tation research that translates Nation’s Wealth: Assessing and Im- science to health care–delivery Appropriate Conceptual Models for proving Child Health,12 an IOM report, systems, practice, and policy; such Understanding Child Health incorporates these models. Although research should also incorporate Disparities neither the life-course nor the eco- quality improvement approaches. Most existing health disparities frame- logical model should be considered works approach inequities with an deterministic or preclude the use of Content adult focus and make the assumption other relevant models, we generally It is not our intention to constrain that child inequities follow a similar recommend that these models in- child health disparities research, and paradigm. However, Horn and Beal10 form future investigations of child the recommendations below are not have argued that a child-specific health disparities. meant to be exclusive. Rather, they

PEDIATRICS Volume 124, Supplement 3, November 2009 S259 Downloaded from www.aappublications.org/news by guest on October 2, 2021 identify areas of emphasis that merit Methods searchers to determine which poli- special consideration. We recom- Methodologic rigor and innovation are cies cover children in different mend that, collectively, child health- both required to advance health- states and time periods. disparities research: disparities research generally and Research Infrastructure 1. incorporate multiple disciplines child health disparities research spe- and perspectives; cifically. Methodologic issues in re- Conference attendees also devel- oped recommendations concerning 2. include etiologic, descriptive, search on child health disparities the infrastructure support required and intervention investigations include the need to: for effective child health disparities (eg, more intervention research 1. ensure greater rigor and consis- research. The critical infrastructure is needed that incorporates tency in metrics for race and eth- elements they identified were train- community engagement and nicity, socioeconomic status, edu- cation, generation, and geography; ing an effective and diverse scien- uses randomized, controlled tri- tific workforce and ensuring funding 2. create or make available mea- als and other designs); for this underappreciated area of 3. document biological, psychoso- sures that are developed and/or investigation. cial, and environmental factors validated in diverse groups and across languages; Specifically, we recommend the devel- that mediate health outcomes opment, implementation, or increased across vulnerable populations; 3. create developmentally appropri- investment in: 4. investigate intrapersonal, family, ate measures for children, includ- ing child self-report measures; 1. broad training in child health dis- and community factors that mod- parities, which should incorporate erate or ameliorate the deleteri- 4. disaggregate traditional census the various disciplines of medicine ous effects of risk factors on child categories to include more specific and allied health across the life health (eg, resiliency); racial and ethnic groups and mixed- span, as well as the social sciences race categories as well as data on 5. investigate critical or sensitive pe- (such as sociology, psychology, and immigrant status and generation; riods for interventions that are political science), public health, specific to particular risks in par- 5. develop intermediary measures education, economics, and policy ticular outcomes; of predictors, mediators, and analysis; outcomes; 6. study the interrelated effects of 2. funding and technical assistance to disparities in health and educa- 6. include health information technol- support this training, including sup- tion as they affect children’s ogy and systematic data collection; port through research career- lives; 7. improve documentation of where development awards; vulnerable (at-risk) children re- 7. explore the contribution to child 3. programs to strengthen child ceive health services and the care health disparities of racial dis- health research and practice work- they are receiving; crimination at the personal, in- force diversity; terpersonal, and institutional 8. incorporate mixed (qualitative and 4. requests for applications from the levels; quantitative) methods into child National Institutes of Health and health disparities research; and other agencies and foundations 8. explore the contribution of self- that address these research rec- perception (eg, racial identity and 9. make better use of existing health ommendations (reviewers should socioeconomic status identity) to data collections by developing new recognize the value of child health- child health disparities; ways to make sensitive data (eg, geographic location) available for disparities research and the devel- 9. investigate the mediating and research as much of what is known opmental and life-course approach- moderating effects of accultura- about the effects of recent expan- es); and tion and immigration status on sions of health insurance for chil- 5. methods for incorporating child child health outcomes; and dren through Medicaid and/or the health disparities research into es- 10. determine if and how clinician cul- State Children’s Health Insurance tablished infrastructural support tural competency and linguistic Program has been learned because for pediatric research (such as the competency influence health care state identifiers in the National National Children’s Study, Intellec- quality and health disparities. Health Interview Survey allow re- tual and Developmental Disabilities

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Research Centers, and Pediatric Re- right but is also essential for ensuring WRITING GROUP search in Office Settings), including the future health of our nation. This *Ivor B. Horn, MD, MPH, FAAP conference was designed to shape the Denice Cora-Bramble, MD, MBA, FAAP support for efforts to enhance re- Tina L. Cheng, MD, MPH, FAAP cruitment of practices that serve research agenda for child health dis- Rene´e Jenkins, MD, FAAP racial and ethnic minority popula- parities, recognize the importance of Lee Pachter, DO, FAAP tions from diverse socioeconomic child health disparities in the life Jill Joseph, MD, PhD backgrounds. course, and maximize our opportuni- STAFF ties for eliminating health disparities. Debby Berlyne, PhD Angela Gaskin, MA CONCLUSIONS Maura Gaughan CONFERENCE ORGANIZERS Regina Shaefer, MPH Improving the health of all children is Tina L. Cheng, MD, MPH, FAAP not only a social priority in its own Rene´e Jenkins, MD, FAAP *Lead author REFERENCES

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Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. Pediatrics is owned, published, and trademarked by the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2009 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397.

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