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Compendium of Health Data Sources for Adults with Intellectual Disabilities

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Compendium of Health Data Sources for Adults with Intellectual Disabilities 2011 Compendium of Health Data Sources for Adults with Intellectual Disabilities Center for Developmental Disabilities Evaluation and Research, Shriver Center, University of Massachusetts Medical School Human Services Research Institute November 2011 Authors: Alexandra Bonardi, Emily Lauer, Courtney Noblett University of Massachusetts Medical School’s Center for Developmental Disabilities Evaluation and Research (CDDER) Sarah Taub, Julie Bershadsky Human Services Research Institute The authors thank Patrick Gleason for his editorial assistance, and members of the RTOI Project Advisory Group for their formative guidance throughout the development of this work. RTOI Project Advisory Group: Robert Baldor, Mary Blauvelt, Val Bradley, Mike Fox, Matt Janicki, Christine Linehan, Chas Moseley, Deirdra Murphy, Susan Parish, Ismaila Ramon, Steven Staugaitis. This compendium was developed as part of the 2010 Research Topic of Interest (RTOI): Health Surveillance of Adults with Intellectual Disability, awarded by the Association of University Centers on Disabilities (AUCD) and funded through a cooperative agreement with the Centers for Disease Control and Prevention (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD). Additional project materials can be accessed by contacting the Principal Investigator at [email protected]. COMPENDIUM OF HEALTH DATA SOURCES FOR ADULTS WITH INTELLECTUAL 2011 DISABILITIES Table of Contents Introduction .................................................................................... 2 Methodology .................................................................................. 2 Summary Tables ............................................................................. 9 Health Data Sources Information Sheets Sources are grouped according to their potential to inform health surveillance for adults with I/DD Sources with highest potential ........................................... 12 Sources with moderate potential ........................................ 64 Sources with limited or no potential ................................... 99 Studies in other countries .................................................. 141 Appendix I: Guide to Study Review ............................................ 157 Appendix II: Critical Review Considerations ............................... 161 1 | Page COMPENDIUM OF HEALTH DATA SOURCES FOR ADULTS WITH INTELLECTUAL 2011 DISABILITIES Introduction This compendium is the summary of a review of national, state, or regional surveillance efforts and major data sources that currently capture health information pertaining to adults with intellectual disability in the United States. The review and development of this compendium was completed by members of the CDDER/HSRI project team awarded the 2010 Research Topic of Interest (RTOI): Health Surveillance of Adults with Intellectual Disability, awarded by the Association of University Centers on Disabilities (AUCD) and funded through a cooperative agreement with the Centers for Disease Control and Prevention (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD). Methodology Identification of data sources The CDDER‐HSRI team began with a literature and web‐based review to identify databases that either collect population health information on adults with intellectual disability directly or could be adapted for this purpose. Studies were collected through a literature review with the National Library of Medicine and other sources, using key words of 'intellectual disabilities', 'mental retardation', 'developmental disabilities' combined with key words for targeted measures such as 'health', 'quality of life', 'access', 'health promotion', 'health care access', 'health care utilization', 'surveillance', 'population health'. In addition, a general web search was performed using these key words, and a targeted search was conducted on the major U.S. studies and projects in other countries on health in people with ID. Major databases included in review 1) Social Sciences Variable Database http://www.icpsr.umich.edu/icpsrweb/ICPSR/ssvd/index.jsp Search for “Intellectual Disability” produced 171 valid responses (from a total of 4963) with the following response categories for specific conditions: Autism (3), Cerebral Palsy (7), Down Syndrome (3), Hydrocephalus (1), Mental Retardation (9), Mental Disability (1), Pervasive Developmental Disorder (1), Retardation (1), ADD (11), ADHD (7), Learning Disability (7), Mental Problems (1), Speech Problems (1), Epilepsy (13), Seizure Disorder (1), Brain Damage (2), Brain Injury (4), Head Injury (1), Bipolar Disorder (22), Schizophrenia (10), Major Depression (1), Alcoholism (2), Anorexia (1), Bulimia (1), Eating Disorder (1), Anxiety Disorder (2), Borderline Personality Disorder (1), Drug Abuse (2), Obsessive compulsive Disorder (2), Post Traumatic Stress Disorders (1), Depression (1), Nervous Condition (2), Depression (20), Other Unfamiliar Condition (15), Other Familiar Condition (13), Don’t Know (2). Search for “learning disability” resulted in 16 surveys and studies. Search for “retarded” resulted in a 116 surveys and studies (not listed). 2) Agency for Healthcare Research and Quality (AHRQ) Master Measures List. 2 | Page COMPENDIUM OF HEALTH DATA SOURCES FOR ADULTS WITH INTELLECTUAL 2011 DISABILITIES Presented as a MS Excel workbook, this includes descriptive information on a variety of measures for consideration in recommending the core set for Adult Medicaid as determined by the Agency for Healthcare Research and Quality (AHRQ) and the Centers for Medicare and Medicaid Services (CMS). Data collected for measures include: NCQA given ID number, NQF ID, Measure Owner, Measure Name, Description, Numerator, Denominator, Specific Condition, Condition Type, Measure Type, IOM Framework Category, Unit of Measurement, Age and Gender information, Service Sector, Data Source, In‐Use information, Meaningful Use, and Use by State. *Some data was not available for all measures. Study Review Inclusion Criteria The project team identified 101 potential health surveillance data sources from preliminary literature review. The sources went through an initial screening process to assess their potential to inform ongoing health surveillance for adults with intellectual disabilities. Sources that met a set of 4 initial criteria were fully reviewed, while sources that did not meet these criteria and therefore showed less potential to inform health surveillance for this population were given an abbreviated review. Appendix A includes those sources that were identified but not included in this compendium. The following algorithm was used for this process: Criteria for inclusion of data source: 1. The dataset includes a population on a national, state, regional, or large metro area. 2. The dataset can be sorted to identify people with a disability. The study can either identify people with I/DD uniquely, or include them as part of an identified subgroup (i.e., people with disabilities). 3. The data set collects health related information or has an identifier that allows it to be matched to a database that includes health information. Data sets that have the potential for matching were included. 4. It collects information on adults (major national children’s databases may be included in methods review). If the study met all of the criteria, then a full review was performed. If the study did not meet one or more of these criteria, only a partial review was completed including the following information: Narrative Description of Study Study Location I/DD Group Uniquely Identifiable? Is I/DD included in larger disability subgroup? Known linkages Potential linkages 3 | Page COMPENDIUM OF HEALTH DATA SOURCES FOR ADULTS WITH INTELLECTUAL 2011 DISABILITIES Review Methodology Data sources meeting the criteria above were reviewed using published and web‐based source material to catalog the sampling methods, definitions used, known and suspected biases in sampling and data collection methods. For each data source, the project team gathered, at a minimum, the following information: 1) Data Source 2) Narrative Description of Study 3) Study Location 4) I/DD Group Identification 5) Population Definitions: Inclusion Criteria 6) Populations Definitions: Exclusion Criteria 7) Dates of Data Collection 8) Health‐Related Measures 9) Sampling Methodology 10) Response Rate 11) Sample Size 12) Data Collection Method 13) Data Collection Methodology Details 14) Data Collection Tools 15) Periodicity of Updates 16) Known Linkages 17) Potential Linkages 18) Data Access Costs (where available) Critical Review After information about the data sources was gathered in the review process, the potential of the data source to inform health surveillance of adults with I/DD was discussed by the CDDER/HSRI project group. Thirty eight (38) studies/ surveys/ data sets that showed a high potential were flagged to undergo a critical review process by data specialists in the CDDER/HSRI project team. The questions considered during this process are detailed in Appendix II. Information considered during the critical review process is included throughout the narrative for each data source. Sorting for Presentation in this Compendium Based on the multi‐step process outlined above, the data sources are sorted into those that appear to have the highest potential to inform and serve as a foundation for future US Health Surveillance of Adults with Intellectual or Developmental Disability, those with
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