Putting “ME” into measurement: Adapting self-report health measures for use with individuals with intellectual disability

Research in Developmental Disabilities - Tập 128 - Trang 104298 - 2022
Katherine Walton1,2, Gloria L. Krahn3, Andrew Buck2, Rebecca Andridge4, Luc Lecavalier1,2, Jill A. Hollway2, Daniel K. Davies5, L. Eugene Arnold2, Susan M. Havercamp2
1The Ohio State University Department of Psychology, 1835 Neil Avenue, Columbus, OH, 43210, USA
2The Ohio State University Nisonger Center, 1581 Dodd Drive, Columbus, OH 43210, USA
3Oregon State University, Corvallis, OR 97331, USA
4Division of Biostatistics, The Ohio State University College of Public Health, 1841 Neil Ave., Columbus, OH 43210, USA
5AbleLink Smart Living Technologies, LLC, 6745 Rangewood Dr. Suite 210, Colorado Springs, CO 80918, USA

Tài liệu tham khảo

Witwer, A, Rosencrans, M, Held, M, Walton, K, Fletcher, R, Cobranchi, C, … Havercamp, S, & The Nisonger RRTC on Health and Function. (in press). A scoping literature review of current psychotherapy practices in intellectual disability. Professional Psychology: Research and Practice. Ader, D.N. (2007). Developing the patient-reported outcomes measurement information system (PROMIS) . Albrecht, 1999, The disability paradox: High quality of life against all odds, Social Science & Medicine, 48, 977, 10.1016/S0277-9536(98)00411-0 Andresen, 2001, Proxy reliability: Health-related quality of life (HRQoL) measures for people with disability, Quality of Life Research, 10, 609, 10.1023/A:1013187903591 Berwick, 2008, The triple aim: Care, health, and cost, Health Affairs, 27, 759, 10.1377/hlthaff.27.3.759 Boland, 2008, Methodological issues in inclusive intellectual disability research: A health promotion needs assessment of people attending Irish disability services, Journal of Applied Research in Intellectual Disabilities, 21, 199, 10.1111/j.1468-3148.2007.00404.x Brooks, 2013, A measure for feelings–using inclusive research to develop a tool for evaluating psychological therapy (C linical O utcomes in R outine E valuation–Learning Disability), British Journal of Learning Disabilities, 41, 320, 10.1111/bld.12020 Cella, 2012, Neuro-QOL: Brief measures of health-related quality of life for clinical research in neurology, Neurology, 78, 1860, 10.1212/WNL.0b013e318258f744 Cuthill, 2003, Development and psychometric properties of the Glasgow Depression Scale for people with a learning disability: Individual and carer supplement versions, The British Journal of Psychiatry, 182, 347, 10.1192/bjp.182.4.347 Davies, 2017, An accessible testing, learning and assessment system for people with intellectual disability, International Journal of Developmental Disabilities, 63, 204, 10.1080/20473869.2017.1294313 Downs, 2019, Psychometric properties of the quality of life Inventory-Disability (QI-Disability) measure, Quality of Life Research, 28, 783, 10.1007/s11136-018-2057-3 Eilson Airmen Turn Child Into Pilot for A Day. (2008). [Photograph]. 〈https://www.af.mil/News/Photos/igphoto/2000683558/〉. Emerson, 2013, Issues concerning self-report data and population-based data sets involving people with intellectual disabilities, Intellectual and Developmental Disabilities, 51, 333, 10.1352/1934-9556-51.5.333 Fujiura, 2012, Self-reported health of people with intellectual disability, Intellectual and Developmental Disabilities, 50, 352, 10.1352/1934-9556-50.4.352 Gallagher, 2016, Factors associated with self-reported health: Implications for screening level community-based health and environmental studies, BMC Public Health, 16, 1, 10.1186/s12889-016-3321-5 Gnambs, 2015, Disclosure of sensitive behaviors across self-administered survey modes: A meta-analysis, Behavior Research Methods, 47, 1237, 10.3758/s13428-014-0533-4 Harniss, 2007, Considerations for developing interfaces for collecting patient-reported outcomes that allow the inclusion of individuals with disabilities, Medical Care, 45, S48, 10.1097/01.mlr.0000250822.41093.ca Harrison, 2001, “Nothing about us without us”: The ideals and realities of participatory action research with people with an intellectual disability, Scandinavian Journal of Disability Research, 3, 56, 10.1080/15017410109510776 Harrison, P.L., & Oakland, T. (2015). ABAS-3: Adaptive behavior assessment system. Western Psychological Services Los Angeles, CA. Hartley, 2005, Perceptions of stress and coping strategies among adults with mild mental retardation: Insight into psychological distress, American Journal on Mental Retardation, 110, 285, 10.1352/0895-8017(2005)110[285:POSACS]2.0.CO;2 Hays, 2018, PROMIS®-29 v2. 0 profile physical and mental health summary scores, Quality of Life Research, 27, 1885, 10.1007/s11136-018-1842-3 Hoekman, 2001, IDQOL–Intellectual Disability Quality Of Life: De ontwikkeling van een instrument ter bepaling van de “kwaliteit van bestaan” van mensen met een verstandelijke handicap, Nederlands Tijdschrift Voor Délelőtt Zorg Aan Verstandelijk Gehandicapten (NTZ)[Dutch Journal for the Care of People with Intellectual Disabilities], 27, 207 Hulbert‐Williams, 2011, Self‐reported life events, social support and psychological problems in adults with intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, 24, 427, 10.1111/j.1468-3148.2011.00624.x Idler, 1997, Self-rated health and mortality: A review of twenty-seven community studies, Journal of Health and Social Behavior, 38, 21, 10.2307/2955359 Jarrett, 2017, ADHD dimensions and sluggish cognitive tempo symptoms in relation to self-report and laboratory measures of neuropsychological functioning in college students, Journal of Attention Disorders, 21, 673, 10.1177/1087054714560821 John, 2018, Reflections from co-researchers with intellectual disability: Benefits to inclusion in a research study team, Intellectual and Developmental Disabilities, 56, 251, 10.1352/1934-9556-56.5.251 Kooijmans, 2022, The adaptation of self-report measures to the needs of people with intellectual disabilities: A systematic review, Clinical Psychology: Science and Practice Krahn, 2009, The dilemma of measuring perceived health status in the context of disability, Disability and Health Journal, 2, 49, 10.1016/j.dhjo.2008.12.003 Krahn, 2014, Development and psychometric assessment of the function-neutral health-related quality of life measure, American Journal of Physical Medicine & Rehabilitation, 93, 56, 10.1097/PHM.0b013e3182a517e6 Krahn, 2021, It’s time to reconsider how we define health: Perspective from disability and chronic condition, Disability and Health Journal, 14, 10.1016/j.dhjo.2021.101129 Kramer, 2011, Following through to the end: The use of inclusive strategies to analyse and interpret data in participatory action research with individuals with intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, 24, 263, 10.1111/j.1468-3148.2010.00602.x Kramer, 2021, Usability and reliability of an accessible patient-reported outcome measure (PROM) software: The Pediatric Evaluation of Disability Inventory–Patient-Reported Outcome (PEDI–PRO), American Journal of Occupational Therapy, 75, 10.5014/ajot.2020.040733 Li, 2013, Psychometric properties of self-reported quality of life measures for people with intellectual disabilities: A systematic review, Journal of Developmental and Physical Disabilities, 25, 253, 10.1007/s10882-012-9297-x Magasi, 2018, Interdisciplinary approach to the development of accessible computer-administered measurement instruments, Archives of Physical Medicine and Rehabilitation, 99, 204, 10.1016/j.apmr.2017.06.036 McDonald, 2017, What’s the harm? Harms in research with adults with intellectual disability, American Journal on Intellectual and Developmental Disabilities, 122, 78, 10.1352/1944-7558-122.1.78 Mileviciute, 2015, Self-reported versus informant-reported depressive symptoms in adults with mild intellectual disability, Journal of Intellectual Disability Research, 59, 158, 10.1111/jir.12075 Mindham, 2003, Glasgow Anxiety Scale for people with an Intellectual Disability (GAS‐ID): Development and psychometric properties of a new measure for use with people with mild intellectual disability, Journal of Intellectual Disability Research, 47, 22, 10.1046/j.1365-2788.2003.00457.x Mokkink, L.B., Prinsen, C.A., Patrick, D.L., Alonso, J., Bouter, L.M., de Vet, H.C., & Terwee, C.B. (2019). COSMIN Study Design checklist for Patient-reported outcome measurement instruments. Amsterdam, The Netherlands. Nery-Hurwit, 2018, Examining the roles of self-compassion and resilience on health-related quality of life for individuals with Multiple Sclerosis, Disability and Health Journal, 11, 256, 10.1016/j.dhjo.2017.10.010 Pickard, 2005, Proxy evaluation of health-related quality of life: A conceptual framework for understanding multiple proxy perspectives, Medical Care, 43, 493, 10.1097/01.mlr.0000160419.27642.a8 Raczka, 2020, An initial validation of a new quality of life measure for adults with intellectual disability: The Mini-MANS-LD, Journal of Intellectual Disabilities, 24, 177, 10.1177/1744629518787895 Schalock, 2002, Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts, Mental Retardation, 40, 457, 10.1352/0047-6765(2002)040<0457:CMAAOQ>2.0.CO;2 Schalock, 2010, Quality of life model development and use in the field of intellectual disability, 17 Schützwohl, 2018, Self-and proxy-rated needs in adults with mild to moderate intellectual disabilities: Perspective matters, Journal of Applied Research in Intellectual Disabilities, 31, 285, 10.1111/jar.12399 Schwartz, 2013, Using cognitively accessible survey software on a tablet computer to promote self-determination among people with intellectual and developmental disabilities, Journal of Human Development, Disability, and Social Change, 21, 17 Scott, 2018, Comparisons of self and proxy report on health-related factors in people with intellectual disability, Journal of Applied Research in Intellectual Disabilities, 31, 927, 10.1111/jar.12452 Shogren, 2021, State of the Field: The Need for Self‐Report Measures of Health and Quality of Life for People With Intellectual and Developmental Disabilities, Journal of Policy and Practice in Intellectual Disabilities, 18, 286, 10.1111/jppi.12386 Skirrow, 2009 Stancliffe, 2014, Responsiveness to self‐report questions about loneliness: A comparison of mainstream and intellectual disability‐specific instruments, Journal of Intellectual Disability Research, 58, 399, 10.1111/jir.12024 Stock, 2019, Technology to support transportation needs assessment, training, and pre-trip planning by people with intellectual disability, Advances in Neurodevelopmental Disorders, 3, 319, 10.1007/s41252-019-00117-x Stock, 2004, Internet-based multimedia tests and surveys for individuals with intellectual disabilities, Journal of Special Education Technology, 19, 43, 10.1177/016264340401900405 Tanis, 2012, Self-report computer-based survey of technology use by people with intellectual and developmental disabilities, Intellectual and Developmental Disabilities, 50, 53, 10.1352/1934-9556-50.1.53 Team, R.C. (2020). R: A language and environment for statistical computing. 〈https://www.R-project.org/〉. Victorson, 2013, Using the NIH Toolbox in special populations: Considerations for assessment of pediatric, geriatric, culturally diverse, non–English-speaking, and disabled individuals, Neurology, 80, S13, 10.1212/WNL.0b013e3182872e26 Vlissides, 2017, Development and psychometric properties of the Psychological Therapies Outcome Scale–Intellectual Disabilities (PTOS-ID), Journal of Intellectual Disability Research, 61, 549, 10.1111/jir.12361 Vlissides, 2016, A systematic review of the outcome measures used in psychological therapies with adults with ID, Psychological Therapies and People Who Have Intellectual Disabilities, 61, 115 Vlot-van Anrooij, 2018, Self-reported measures in health research for people with intellectual disabilities: An inclusive pilot study on suitability and reliability, BMC Medical Research Methodology, 18, 1, 10.1186/s12874-018-0539-1 White, 2015, Promoting self-determination in health for people with intellectual disabilities through accessible surveys of their healthcare experiences, Journal of Human Development, Disability, and Social Change, 21, 29 Wigham, 2011, The Lancaster and Northgate Trauma Scales (LANTS): The development and psychometric properties of a measure of trauma for people with mild to moderate intellectual disabilities, Research in Developmental Disabilities, 32, 2651, 10.1016/j.ridd.2011.06.008