Psychometric Properties of Self-reported Quality of Life Measures for People with Intellectual Disabilities: A Systemati
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Psychometric Properties of Self-reported Quality of Life Measures for People with Intellectual Disabilities: A Systematic Review Chunxiao Li & Emily W. S. Tsoi & Antony L. Zhang & Shihui Chen & C. K. John Wang Published online: 21 August 2012 # Springer Science+Business Media, LLC 2012
Abstract This article aimed to review outcome measure instruments of self-reported Quality of Life (QOL) in people with Intellectual Disability (ID). Instruments were identified from five electronic databases (CINAHL, Medline, PsychINFO, Cochrane Library, and ERIC) and hand-searching with the following inclusion criteria: (i) the paper was to evaluate the measurement properties of QOL; (ii) the measurement measured dimensions/indicators that align with the QOL construct; (iii) the target participants should include an ID population; (iv) the measurement should include self-reported QOL ratings from the ID population; and (v) the study was published in peer-reviewed English language literature. Nine QOL instruments met the inclusion criteria. The evidence of reliability and validity of the included instruments varied. None of the instruments reported for responsiveness. The Choice Questionnaire had the most evidence supporting its measurement properties while the Maryland Ask Me! Project had the least. Future studies are needed to further refine these instruments. Keywords Developmental disability . Well-being . Systematic review . Validity . Reliability Intellectual disability (ID) is a generalized disorder, which encompasses a wide array of cognitive and behavioral deficiencies; and affects the individuals in all areas of life (AAIDD 2010). The severity of ID is classified into four types on the basis of C. Li (*) : C. K. J. Wang Physical Education and Sports Science, National Institute of Education, Nanyang Technological University, 1 Nanyang Walk, Singapore 637616, Singapore e-mail: [email protected] E. W. S. Tsoi Department of Social Work and Social Administration, University of Hong Kong, Pokfulam, Hong Kong A. L. Zhang School of Health Sciences, Royal Melbourne Institute of Technology, Melbourne, Victoria, Australia S. Chen Faculty of Arts and Sciences, Hong Kong Institute of Education, Tai Po, Hong Kong
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J Dev Phys Disabil (2013) 25:253–270
intelligence quotient test (i.e., mild, moderate, severe, and profound ID; AAIDD 2010). With a childhood onset, ID symptoms persist over the life course. Individuals who have ID are often disadvantaged in equal participation in society and a range of life domains (e.g., health care, family services). Quality of Life (QOL) is a popular outcome measure in fields such as education, health care, social, and family services (Schalock 2004). Understanding QOL for people with ID is useful for assessing their service needs or the effectiveness of intervention programmes (Schalock 2004). Only when QOL is assessed, areas of lives that need improvement can be found and effective actions (e.g., service design) can then be taken to enhance life quality in ID population (Schalock et al. 2002). Thou
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