Sampling and ethical issues in a multicenter study on health of people with intellectual disabilities

• Published in: Journal of clinical epidemiology 2010-10, Vol.63 (10), p.1091-1100
• Main Authors: Veenstra, Marja Y, Walsh, Patricia N, van Schrojenstein Lantman-de Valk, Henny M.J, Haveman, Meindert J, Linehan, Christine, Kerr, Mike P, Weber, Germain, Salvador-Carulla, Luis, Carmen-Cara, Alexandra, Azema, Bernard, Buono, Serafino, Germanavicius, Arunas, Tossebro, Jan, Maatta, Tuomo, van Hove, Geert, Moravec, Dasa
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Biological and medical sciences; Disabilities; Ethics; Europe - epidemiology; Female; health; Health Services Needs and Demand - ethics; Health Status Indicators; Healthcare Disparities; Humans; Informed consent; Informed Consent - ethics; Informed Consent - legislation & jurisprudence; Intellectual disabilities; Intellectual Disability - epidemiology; Internal Medicine; Male; Medical sciences; Middle Aged; Miscellaneous; Multicenter research; Patient Selection - ethics; Public health. Hygiene; Public health. Hygiene-occupational medicine; Qualitative Research; Sampling; Social Environment; Teaching. Deontology. Ethics. Legislation; vulnerable people; Young Adult
• ISSN: 0895-4356; 1878-5921
• DOI: 10.1016/j.jclinepi.2009.12.001

Abstract Objectives To study health inequalities in persons with intellectual disabilities, representative and unbiased samples are needed. Little is known about sample recruitment in this vulnerable group. This study aimed to determine differences in ethical procedures and sample recruitment in a multicenter research on health of persons with intellectual disabilities. Study questions regarded the practical sampling procedure, how ethical consent was obtained in each country, and which person gave informed consent for each study participant. Study Design and Setting Exploratory, as part of a multicenter study, in 14 European countries. After developing identical guidelines for all countries, partners collected data on health indicators by orally interviewing 1,269 persons with intellectual disabilities. Subsequently, semistructured interviews were carried out with partners and researchers. Results Identification of sufficient study participants proved feasible. Sampling frames differed from nationally estimated proportions of persons with intellectual disabilities living with families or in residential settings. Sometimes, people with intellectual disabilities were hard to trace. Consent procedures and legal representation varied broadly. Nonresponse data proved unavailable. Conclusion To build representative unbiased samples of vulnerable groups with limited academic capacities, international consensus on respectful consent procedures and tailored patient information is necessary.