Abstract
As the concept of quality of life (QOL) has evolved from a theoretical concept to both a measurable construct and an action-oriented change agent in the field of intellectual disabilities, there has emerged a corresponding need to develop, implement, and use a systematic approach to the assessment of domain-referenced quality of life outcomes. The purpose of this article is to suggest eight principles based on published literature and the authors’ experiences that should underlie the assessment of QOL-related personal outcomes in the field of intellectual disabilities. Data from the development of the personal outcomes scale are used to exemplify each principle. The article’s premise is that model development and test construction should work in tandem, and that a ‘quality of life assessment instrument’ should be based on an empirically derived QOL conceptual and measurement framework/model.
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Training interviewing degrees: Level 1: trained interviewer; Level 2: trainer interviewer (degree to train level 1-interviewer); Level 3: master trainer (degree to train level 2 interviewer).
References
Anastasi, A. (1961). Psychological testing. New York: The Macmillan Company.
Bonham, G. S., Basehart, S., Schalock, R. L., Marchand, C. B., Kirchner, N., & Rumenap, J. M. (2004). Consumer-based quality of life assessment: The maryland ask me! project. Mental Retardation, 42, 338–355.
Brown, I., Keith, K. D., & Schalock, R. L. (2004). Quality of life conceptualization, measurement, and application: Validation of the SIRG-QOL consensus principles. Journal of Intellectual Disabilities Research, 48(4 and 5), 451.
Campbell, A., Converse, P. E., & Rodgers, W. L. (1976). The quality of American life. New York: Russell Sage Foundation.
Campo, S. F., Sharpton, W. R., Thompson, B., & Sexton, D. (1997). Correlates of the quality of life of adults with severe or profound mental retardation. Mental Retardation, 35(5), 329–337.
Carr, A. J., & Higginson, I. J. (2001). Measuring quality of life: Are quality of life measures patient centred? British Medical Journal, 322, 1357–1360.
Cicchetti, D. (1994). Guidelines, criteria and rules of thumb for evaluating normed and standardized assessment instruments in psychology. Psychological Assessment, 6, 284–290.
Cicchetti, D. V., & Sparrow, S. S. (1981). Developing criteria for establishing interrater reliability of specific items: Applications to assessment of adaptive behavior. American Journal of Mental Deficiency, 86, 127–137.
Cronbach, L. J., & Meehl, P. E. (1955). Construct validity in psychological tests. Psychological Bulletin, 52, 281–302.
Cummins, R. A. (1997). Assessing quality of life. In R. I. Brown (Ed.), Assessing quality of life for people with disabilities: Models, research, and practice (pp. 116–150). London: Stanley Thornes.
Cummins, R. A. (2004). Instruments for assessing quality of life. In J. H. Hogg & A. Langa (Eds.), Approaches to the assessment of adults with intellectual disabilities: A service providers guide (pp. 130–152). London: Blackwell.
Cummins, R. A. (2005). Moving from the QOL concept to a theory. Journal of Intellectual Disability Research, 49(10), 699–706.
Goode, D., & Hogg, J. (1994). Towards an understanding of holistic quality of life in people with profound intellectual and multiple disabilities. In D. Goode (Ed.), Quality of life for persons wih disabilities—international perspectives and issues (pp. 197–207). Cambridge, MA: Brookline Books.
Hughes, C., Hwang, B., Kim, J., Eisenman, L., & Killian, D. (1995). Quality of life in applied research: A review and analysis of empirical measures. American Journal on Mental Retardation, 99, 623–641.
Inoguchi, T., & Shin, D. C. (2009). The quality of life in confucian Asia: From physical welfare to subjective well-being. Social Indicators Research, 92(2), 183–190.
Jenaro, C., Verdugo, M. A., Caballo, C., Balboni, G., Lachappele, Y., Otbrebski, W., et al. (2005). Cross-cultural study of person-centered quality of life domains and indicators: A replication. Journal of Intellectual Disability Research, 49(10), 734–739.
Lau, A. L. D., Cummins, R. A., & McPherson, W. (2005). An investigation into the cross-cultural equivalence of a personal well-being index. Social Indicators Research, 72, 403–430.
Moon, P., Budts, W., & De Geest, S. (2006). Critique on the conceptualisation of quality of life: A review and evaluation of different conceptual approaches. International Journal of Nursing Studies, 43, 891–901.
Murphy, K. R., & Davidshofer, C. O. (1998). Psychological testing; principles and applications. New Jersey: Prentice Hall.
Naidoo, P. (2006). Potential contributions to disability theorizing and research from positive psychology. Disability and Rehabilitation, 28(9), 595–602.
Perry, J., & Felce, D. (2002). Subjective and objective quality of life assessment: Responsiveness, response bias, and resident: Proxy concordance. Mental Retardation, 40(6), 445–456.
Prescott-Allen, R. (2001). The well-being of nations. Washington, DC: Island Press.
Santelli, B., Singer, G. H. S., DiVinere, N., Ginsberg, C., & Powers, L. (1998). Participatory action research: Reflections on critical incidents in a participatory action research project. Journal of the Association for Persons with Severe Handicaps, 23, 211–222.
Schalock, R. L., Bonham, G. S., & Verdugo, M. A. (2008a). The conceptualization and measurement of quality of life: Implications for program planning and evaluation in the field of intellectual disabilities. Evaluation and Program Planning, 31(2), 181–190.
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, 6, 457–470.
Schalock, R. L., Gardner, J. F., & Bradley, V. J. (2007). Quality of life for persons with intellectual and other developmental disabilities: Applications across individuals, organizations, communities, and systems. Washington, DC: American Association on Intellectual and Developmental Disabilities.
Schalock, R. L., Keith, K. D., Verdugo, M. A., & Gomez, L. E. (2009). Quality of life model development and use in the field of intellectual disability. In R. Kober (Ed.), Enhancing the quality of life of people with intellectual disabilities: From theory to practice. New York: Springer.
Schalock, R. L., & Verdugo, M. A. (2002). Handbook on quality of life for human service practitioners. Washington, DC: American Association on Mental Retardation.
Schalock, R. L., Verdugo, M. A., Bonham, G. S., Fantova, F., & van Loon, J. (2008b). Enhancing personal outcomes: Organizational strategies, guidelines, and examples. Journal of Policy and Practice in Intellectual Disabilities, 5(1), 18–28.
Schalock, R. L., Verdugo, M. A., Jenaro, C., Wang, M., Wehmeyer, M., Xu, J., et al. (2005). A cross-cultural study of quality of life indicators. American Journal on Mental Retardation, 110, 298–311.
Taillefer, M. C., Dupuis, G., Roberge, M. A., et al. (2003). Health-related quality of life models: Systematic review of the literature. Social Indicators Research, 64(2), 293–323.
Thompson, J. R., Hughes, C., Schalock, R. L., Silverman, W., Tassé, M. J., Bryant, B., et al. (2002). Integrating supports in assessment and planning. Mental Retardation, 40, 390–405.
Tsatsanis, K. D., Dartnall, N., Cicchetti, D., Sparrow, S. S., Klin, A., & Volkmar, F. R. (2003). Concurrent validity and classification accuracy of the Leiter and Leiter-R in low-functioning children with autism. Journal of Autism & Developmental Disorders, 33, 23–30.
van Loon, J., Van Hove, G., Schalock, R., & Claes, C. (2008). POS. Persoonlijke Ondersteuningsuitkomsten Schaal. Individuele kwaliteit van bestaan scoreboek. Antwerpen, Apeldoorn: Garant.
Verdugo, M. A., Arias, B., Gomez, L. E., & Schalock, R. L. (2008). The GENCAT scale of quality of life: Standardization manual. Barcelona: Department of Social Action and Citizenship, Generalitat of Catalonia (Available from Laura E. Gomez: lauraelisabet@usal.es).
Verdugo, M. A., Schalock, M. A., Keith, K. D., & Stancliffe, R. J. (2005). Quality of life and its measurement: Important principles and guidelines. Journal of Intellectual Disability Research, 49(10), 707–717.
Wang, M., Schalock, R. L., Verdugo, M. A., & Jenaro, C. (2009). Examining the factor structure and hierarchical nature of the quality of life construct. American Journal on Intellectual and Developmental Disabilities (in press).
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Claes, C., Van Hove, G., van Loon, J. et al. Quality of Life Measurement in the Field of Intellectual Disabilities: Eight Principles for Assessing Quality of Life-Related Personal Outcomes. Soc Indic Res 98, 61–72 (2010). https://doi.org/10.1007/s11205-009-9517-7
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DOI: https://doi.org/10.1007/s11205-009-9517-7