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Psychometric Properties of Self-reported Quality of Life Measures for People with Intellectual Disabilities: A Systematic Review

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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.

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References

  • AAIDD (2010). Intellectual disability: Definition, classification, and systems of supports (11th ed). Retrieved from http://www.aaidd.org/media/PDFs/CoreSlide.pdf

  • Andresen, E. M. (2000). Criteria for assessing the tools of disability outcomes research. Archives of Physical Medicine and Rehabilitation, 81, S15–S20.

    Article  PubMed  Google Scholar 

  • Beadle-Brown, J., Murphy, G., & DiTerlizzi, M. (2009). Quality of life for the Camberwell Cohort. Journal of Applied Research in Intellectual Disabilities, 22, 380–390.

    Article  Google Scholar 

  • Bonham, G. S., Basehart, S., Schalock, R. L., Marchand, C. B., Kirchner, N., Rumenap, J. M., et al. (2004). Consumer-based quality of life assessment: The Maryland Ask Me! Project. Mental Retardation, 42, 338–355.

    Article  PubMed  Google Scholar 

  • Brown, R. I., Schalock, R. L., & Brown, I. (2009). Quality of life: Its application to persons with intellectual disabilities and their families- introduction and overview. Journal of Policy and Practices in Intellectual Disability, 6, 2–6.

    Article  Google Scholar 

  • Caballo, C., Crespo, M., Jenaro, C., Verdugo, M. A., & Martinez, J. L. (2005). Factor structure of the Schalock and Keith Quality of Life Structure (QOL-Q): Validation on Mexican and Spanish samples. Journal of Intellectual Disability Research, 49, 773–776.

    Article  PubMed  Google Scholar 

  • Cummins, R. A. (1997). Self-rated quality of life scales for people with an intellectual disability: a review. Journal of Applied Research in Intellectual Disabilities, 10, 199–216.

    Article  Google Scholar 

  • Cummins R. A. (1998). Measuring subjective life quality by proxy response. Paper presented at the Australian Society for the Study of Intellectual Disability National Conference, Adelaide, South Australia, 28 September 1998.

  • Cummins, R. A. (2004a). Self-rated quality of life scales for people with an intellectual disability: A reply to Ager & Hatton. Journal of Applied Research in Intellectual Disabilities, 14, 1–11.

    Google Scholar 

  • Cummins, R. A. (2004b). Instruments assessing quality of life: Characteristics and functions. In J. H. Hogg & A. Langa (Eds.), Approaches to the assessment of adults with intellectual disabilities: Part I: A service provider’s guide (pp. 130–152). London: Blackwell Publishing.

    Google Scholar 

  • Cummins, R. A., & Lau, A. D. L. (2005). Personal wellbeing index-intellectual disability (3rd ed.). Australia: Deakin University.

    Google Scholar 

  • Finlay, W. M. L., & Lyons, E. (2001). Methodological issues in interviewing and using self- report questionnaires with people with mental retardation. Psychological Assessment, 13, 319–335.

    Article  PubMed  Google Scholar 

  • Fischer, G. H., & Molenaar, I. W. (1995). Rasch models: Foundations, recent developments, and applications. New York: Springer.

    Google Scholar 

  • Harner, C. J., & Heal, L. W. (1993). The Multifaceted Lifestyle Satisfaction Scale (MLSS): psychometric properties of an interview schedule for assessing personal satisfaction of adults with limited intelligence. Research in Developmental Disabilities, 14, 221–236.

    Article  PubMed  Google Scholar 

  • Hartley, S. L., & Maclean, W. E. (2006). A review of the reliability and validity of Likert-type scales for people with intellectual disability. Journal of Intellectual Disability, 50, 813–827.

    Article  Google Scholar 

  • Heal, L. W., & Chadsey-Rusch, J. (1985). The Lifestyle Satisfaction Scale (LSS): Assessing individuals’ satisfaction with residence, community settings an associated services. Applied Research in Mental Retardation, 6, 470–495.

    Article  Google Scholar 

  • Kaptein, S., & Jansen, D. (2008). Mental health problems in children with intellectual disability: use of the strengths and difficulties questionnaire. Journal of Intellectual Disability Research, 52, 125–131.

    PubMed  Google Scholar 

  • McGillivray, J. A., Lau, A. L. D., Cummins, R. A., & Davey, G. (2009). The utility of the Personal Wellbeing Index Intellectual Disability Scale in an Australian Sample. Journal of Applied Research in Intellectual Disabilities, 22, 276–286.

    Article  Google Scholar 

  • Noonan, V. K., Miller, W. C., & Noreau, L. (2009). A review of instruments assessing participation in persons with spinal cord injury. Spinal Cord, 47, 435–446.

    Article  PubMed  Google Scholar 

  • Novak, A. R., Heal, L. W., Pilewski, M. B., & Laidlaw, T. (1980). Independent apartment settings for developmentally disabled adults: An empirical analysis. Paper presented at the meeting of the American Association on Mental Deficiency, San Francisco.

  • People on the Go. (1996). Signs of quality. Annapolis: The Arc of Maryland.

    Google Scholar 

  • Perry, J., & Felce, D. (2002). Subjective and objective quality of life assessment: Responsiveness, response bias and resident: proxy concordance. Mental Retardation, 40, 445–456.

    Google Scholar 

  • Petry, K., & Maes, B. (2006). Identifying expressions of pleasure and displeasure by persons with profound multiple disabilities. Journal of Intellectual and Developmental Disability, 31, 28–38.

    Article  PubMed  Google Scholar 

  • Pirpiris, M., & Graham, H. K. (2004). Uptime in children with cerebral palsy. Journal of Pediatric Orthopaedics, 24, 521–528.

    Article  PubMed  Google Scholar 

  • Rapley, M., & Beyer, S. (1996). Daily activity, community participation and quality of life in an ordinary housing network. Journal of Applied Research in Intellectual Disabilities, 9, 31–39.

    Article  Google Scholar 

  • Rapley, M., Lobley, J., & Bozatzis, N. (1994). Preliminary validation of the Schalock and Keith (1994) Quality of Life Questionnaire with a British Population. Lancaster: Department of Psychology, Lancaster University.

    Google Scholar 

  • Ruddick, L., & Oliver, C. (2005). The development of a health status measure for self-report by people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 18, 143–150.

    Article  Google Scholar 

  • Schalock, R. L. (2004). The concept of quality of life: what we know and not know. Journal of Intellectual Disability Research, 48, 203–216.

    Article  PubMed  Google Scholar 

  • Schalock, R. L., & Keith, K. D. (1993). Quality of life questionnaire manual. Worthington, Ohio: IDS Publishing Corporation.

    Google Scholar 

  • Schalock, R. L., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L., et al. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Mental Retardation, 40, 457–470.

    Article  PubMed  Google Scholar 

  • Schwartz, C., & Rabinovitz, S. (2003). Life satisfaction of people with intellectual disability living in community residences: perceptions of the residents, their parents and staff members. Journal of Intellectual Disability Research, 47, 75–84.

    Article  PubMed  Google Scholar 

  • Stancliffe, R. J. (1995). Choice and decision making and adults with intellectual disability. Unpublished doctoral thesis, Macquarie University, Sydney.

  • Stancliffe, R. J., & Parmenter, T. R. (1999). The choice questionnaire: a scale to assess choices exercised by adults with intellectual disability. Journal of Intellectual & Developmental Disability, 24, 107–132.

    Article  Google Scholar 

  • van Loon, J., van Hove, G., Schalock, R., & Claes, C. (2009). Personal outcome scale: Administration and standardization manual. Retrieved on 16 Jan 2012, from http://www.poswebsite.org/docs/POS-Admin_-Stand__Manual.pdf

  • Verdugo, M. Á., Arias, B., Gómez, L. E., & Schalock, R. L. (2010). Development of an objective instrument to assess quality of life in social services: reliability and validity in Spain. International Journal of Clinical and Health Psychology, 10, 105–123.

    Google Scholar 

  • Wang, M., Schalock, R. L., Verdugo, M. A., & Jenaro, C. (2010). Examining the factor structure and hierarchical nature of the quality of life construct. American Journal on Intellectual and Developmental Disabilities, 115, 218–233.

    Article  PubMed  Google Scholar 

  • Ware, J. E., Snow, K. K., Kosinski, M., & Gandek, B. (1993). SF-36 health survey. Manual and interpretation guide. Boston: The Health Institute, New England Medical Centre.

    Google Scholar 

  • Watson, S. M. R., & Keith, K. D. (2002). Comparing the quality of life of school-age children with and without disabilities. Mental Retardation, 40, 304–312.

    Article  PubMed  Google Scholar 

  • Yu, A. L. C., Jupp, J. J., & Taylor, A. (1996). The discriminate validity of the Lifestyle Satisfaction Scale (LSS) for the assessment of Australian adults with intellectual disabilities. Journal of Intellectual and Developmental Disability, 21, 3–15.

    Article  Google Scholar 

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Correspondence to Chunxiao Li.

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Li, C., Tsoi, E.W.S., Zhang, A.L. et al. Psychometric Properties of Self-reported Quality of Life Measures for People with Intellectual Disabilities: A Systematic Review. J Dev Phys Disabil 25, 253–270 (2013). https://doi.org/10.1007/s10882-012-9297-x

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