Information About Development of the Measure:
During the development of the HRQoL-IDD-16, we partnered with people with IDD, caregivers, and community agencies. Their opinions and experiences drove decision-making about the health-related quality-of-life items and responses. For details on the development process see:
HRQoL
Clark, L., Pett, M., Cardell, E.M., Guo, J., & Johnson, E.(2017). Developing a health-related quality of life measure for people with intellectual disability. Intellectual and Developmental Disabilities, 55(3), doi:10.1352/1934-9556-55.3.140. Published, 06/2017. Through exploratory factor analysis (n-222) we completed further testing to identify the final 16 items (⍺=.64-.73).
Conference Presentations during the development of the HRQoL Measure
Clark, L., Pett, M., Guo, J., Cardell, B., Johnson, E., Guerra., N., & Wawrzynski, S. (2018, September). Precision Outcomes: HRQoL for People with IDD. Council for the Advancement of Nursing Science, Washington, D.C.
Cardell, B., Benson, J., Pett, M., Clark, L., Guo, J., Johnson, E. (2018). Development of a cognitively accessible self-report measure of health-related quality of life in people with intellectual and developmental disability. American Occupational Therapy Association annual conference in Salt Lake City, UT.
Clark, L., Pett, M., Guo, J., Cardell, B., Johnson, E., Wawrzynski, S., Romero, S., Geer, B., Guerra, N. (April, 2018) Person-generated quality of life data for adults with intellectual disabilities. Presented at Western Institute of Nursing, Spokane, WA.
Pett, M., Clark, L., Cardell, B., Johnson, E., & Guo, J. (2015, April). Instrument development of a self-reported health measure for persons with intellectual disability: A case study. Paper presented at the Western Institute for Nursing Annual Conference, Albuquerque, NM.
Pett M, Clark L, Cardell E, Johnson E, Guo J, et al. (June, 2015). A patient centered health-related quality of life (HRQOL) self-report measure for persons with intellectual and developmental disabilities. American Academy of Developmental Medicine and Dentistry; Los Angeles, CA
Clark, L., Guo, J., Pett, M., Cardell, B., & Johnson, E. (2014, September). Complexity in instrument development: Designing a health-related quality of life measure for people with intellectual disabilities. Paper selected as a Presentation of Distinction and presented at the Council for the Advancement of Nursing Science’s 2014 State of the Science Congress on Nursing Research: Optimizing Health by Addressing Complexity, Washington, D.C.
Pett, M., Clark, L., Cardell, B., Guo, J-W, & Johnson, E. (2014, June). Enhancing self-determination: A community-based participatory research (CBPR) approach to defining and assessing self-reported health-related quality of life (HRQOL) for persons with intellectual disability. Annual Meeting of the American Association on Intellectual and Developmental Disabilities, Orlando, FL
Pett, M., Clark, L., Wright, S., Richardson, S., Hart, S., Richards, D., Johnson, E., Guo, J-W., Eaton, J., Lyons, A., Wright, C., Cardell, B., Jordan, K., Reel, J., Burley, J., Dorius, J. (2014, April). Building interdisciplinary collaboration in community-based health equity research. Western Institute of Nursing. Seattle, WA
Other Related Research
Cardell, B. Clark, L., Pett, M. (2015). Measurement considerations for achieving equity in research inclusion for transition-aged youth with disabilities. Journal of Pediatric Nursing, 30, 36-44. doi:10.1016/j.pedn.2014.10.019.
Cardell, B. (2015). Reframing health promotion for people with intellectual disabilities. Global Qualitative Nursing Research. doi:10.1177/ 2333393615580305. Article, Refereed Journal, Published, 04/2015.
Cardell, B. (2013). Identifying perspectives of health in adults with intellectual disabilities through engagement in participatory research. Inclusion, Vol. 1, No. 3, pp. 147-163. doi: 10.1352/2326-6988- 1.3.147. Article, Refereed Journal, Published, 12/2013.
Pett, M., Clark, L., Eldredge, A., Cardell, B., Jordan, K., Chambless, C., & Burley, J. (2013). Effecting Healthy Lifestyle Changes in Overweight and Obese Young Adults with Intellectual Disabilities. American Journal of Intellectual and Developmental Disabilities, 118, 3.
Clark, L., Cardell, B., Eldredge, A., Chambless, C., Pett, M.A., Rothwell, E., & Burley, J. (2011). The realities of collecting research data from people with intellectual disabilities. Communicating Nursing Research, 44,164.
Pett, M.A., Clark, L., Eldredge, A., Jewitt, J., Cardell, B., Reese, S., & Hiatt, B.(2011). Effecting healthy lifestyle change in young adults with intellectual disabilities. Communicating Nursing Research, 44, 162.
Clark, L., Rothwell, E., Chambless, C., Cardell, B., Pett, M. A., Eldredge, A., Johnson, S. L., & Burley, J. (2010). The process of CBPR with young adults with disabilities. Communicating Nursing Research, 43: 199.
References for Background
Cardell, B., Clark, L., & Pett, M. A. (2015). Measurement considerations for achieving equi- ty in research inclusion for transition-aged youth with disabilities. Journal of Pediatric Nursing, 30(1), 36–44. http://dx.doi.org.ezproxy.lib.utah. edu/10.1016/j.pedn.2014.10.019
Claes, C., Vandevelde, S., Van Hove, G., Van Loon, J., Verschelden, G., & Schalock, R. (2012). Relationship between self-report and proxy ratings on assessed personal quality of life- related outcomes. Journal of Policy and Practice in Intellectual Disabilities, 9, 159–165. http://dx. doig.org/10.111/j.1741-1130.2012.00353.x
DeSalvo, K. B., Bloser, N., Reynolds, K., He, J., & Muntner, P. (2006). Mortality prediction with a single general self-rated health question. A meta-analysis. Journal of General Internal Medicine, 21(3), 267–275. http://dx.doi.org/10. 1111/j.1525-1497.2005.00291.x
Finlay, W. M., & Lyons, E. (2001). Methodological issues in interviewing and using self-report questionnaires with people with mental retar- dation. Psychological Assessment, 13(3), 319– 335. http://dx.doi.org/10.1037/1040-3590.13.3. 319
Fujiura, G. T. (2012). Self-reported health of people with intellectual disability. Intellectual and Developmental Disabilities, 50(4), 352–369. http://dx.doi.org/10.1352/1934-9556-50.4.352
Parmenter, T. R. (2001). Intellectual disabilities— Quo vadis? In G. L. Albrecht, K. Seelman, & M. Bury (Eds.), Handbook of disability studies (pp. 267–296). Thousand Oaks, CA: Sage.
Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life: A conceptual model of patient outcomes. Journal of the American Medical Association, 273(1), 59–65. http://dx.doi.org/10.1001/jama. 1995.03520250075037