Psychometric Properties of a Brief Self-reported Health-related Quality of Life Measure (HRQoL-IDD) for Persons with Intellectual and Developmental Disabilities

Overview

Journal J Appl Res Intellect Disabil

Date 2021 Feb 1

PMID 33522020

Citations 1

Authors

Marjorie A Pett

Jia-Wen Guo

Beth Cardell

Erin P Johnson

Nichole Guerra

Lauren Clark

Affiliations

Soon will be listed here.

Abstract

Background: To encourage self-determination and address health disparities among persons with intellectual and developmental disabilities, clinicians and researchers rely on self-reported measures like health-related quality of life (HRQoL). This study evaluated the psychometric properties of a theory-driven self-reported HRQoL measure for adults requiring mild to moderate support related to intellectual and developmental disabilities.

Method: 224 volunteers completed 42 quality of life items developed with extensive input from persons with intellectual and developmental disabilities, family members/caregivers, and providers. The 5-point Likert scale format with visual images of fluid-filled cups represented the range of responses.

Results: Exploratory and Unrestricted Factor Analyses yielded 16 HRQoL items with 4 subscales: Functional Well-Being, Emotional Well-Being, Social Well-Being, and Healthy Decision-making. The HRQoL-IDD explained 62.8% of variance, had satisfactory internal consistency (0.73-0.83), stability of reponses, and reading level (2nd grade, ages 7-8).

Conclusions: The HRQoL-IDD is a promising measure of self-reported HRQoL for use in community-based settings for persons requiring mild to moderate support related to intellectual and developmental disabilities.

Citing Articles

Outcome Measures in intellectual disability: A Review and narrative synthesis of validated instruments.

Kumar M, Sawhney I, Chester V, Alexander R, Mitchell J, Shankar R Int J Soc Psychiatry. 2024; 71(2):239-253.

PMID: 39453310 PMC: 11874570. DOI: 10.1177/00207640241291517.

Measuring empathy in youth and young adults with mild intellectual disabilities or borderline intelligence in residential care - The validation of an adapted basic empathy scale: The BES-MID.

Heynen E, Borghuis A, Pat-El R, Moonen X, Stams G Heliyon. 2024; 10(10):e31050.

PMID: 38813188 PMC: 11133657. DOI: 10.1016/j.heliyon.2024.e31050.

References

Skotko B, Levine S, Goldstein R . Self-perceptions from people with Down syndrome. Am J Med Genet A. 2011; 155A(10):2360-9. PMC: 3740159. DOI: 10.1002/ajmg.a.34235. View

Perez J, Mosher Z, Watson S, Sheppard E, Brabston E, McGwin Jr G . Readability of Orthopaedic Patient-reported Outcome Measures: Is There a Fundamental Failure to Communicate?. Clin Orthop Relat Res. 2017; 475(8):1936-1947. PMC: 5498383. DOI: 10.1007/s11999-017-5339-0. View

Fang J, Fleck M, Green A, McVilly K, Hao Y, Tan W . The response scale for the intellectual disability module of the WHOQOL: 5-point or 3-point?. J Intellect Disabil Res. 2011; 55(6):537-49. DOI: 10.1111/j.1365-2788.2011.01401.x. View

Hays R, Hahn H, Marshall G . Use of the SF-36 and other health-related quality of life measures to assess persons with disabilities. Arch Phys Med Rehabil. 2002; 83(12 Suppl 2):S4-9. DOI: 10.1053/apmr.2002.36837. View

Timmerman M, Lorenzo-Seva U . Dimensionality assessment of ordered polytomous items with parallel analysis. Psychol Methods. 2011; 16(2):209-20. DOI: 10.1037/a0023353. View

Schalock R, Bonham G, Verdugo M . The conceptualization and measurement of quality of life: implications for program planning and evaluation in the field of intellectual disabilities. Eval Program Plann. 2008; 31(2):181-90. DOI: 10.1016/j.evalprogplan.2008.02.001. View

Hartley S, MacLean Jr W . A review of the reliability and validity of Likert-type scales for people with intellectual disability. J Intellect Disabil Res. 2006; 50(Pt 11):813-27. DOI: 10.1111/j.1365-2788.2006.00844.x. View

Krahn G, Fox M . Health disparities of adults with intellectual disabilities: what do we know? What do we do?. J Appl Res Intellect Disabil. 2013; 27(5):431-46. PMC: 4475843. DOI: 10.1111/jar.12067. View

Driessnack M, Furukawa R . Arts-based data collection techniques used in child research. J Spec Pediatr Nurs. 2011; 17(1):3-9. DOI: 10.1111/j.1744-6155.2011.00304.x. View

10.

Nord E . The desirability of a condition versus the well being and worth of a person. Health Econ. 2001; 10(7):579-81. DOI: 10.1002/hec.647. View

11.

Pinhas-Hamiel O, Singer S, Pilpel N, Fradkin A, Modan D, Reichman B . Health-related quality of life among children and adolescents: associations with obesity. Int J Obes (Lond). 2005; 30(2):267-72. DOI: 10.1038/sj.ijo.0803107. View

12.

Butler M, Kane R, Larson S, Jeffery M, Grove M . Closing the quality gap: revisiting the state of the science (vol. 7: quality improvement measurement of outcomes for people with disabilities). Evid Rep Technol Assess (Full Rep). 2014; (208.7):1-112. PMC: 4781164. View

13.

Rosenquist P, Brenes G, Arnold E, Kimball J, McCall W . Health-related quality of life and the practice of electroconvulsive therapy. J ECT. 2006; 22(1):18-24. DOI: 10.1097/00124509-200603000-00004. View

14.

Reichard A, Stolzle H, Fox M . Health disparities among adults with physical disabilities or cognitive limitations compared to individuals with no disabilities in the United States. Disabil Health J. 2011; 4(2):59-67. DOI: 10.1016/j.dhjo.2010.05.003. View

15.

Schmidt S, Power M, Green A, Lucas-Carrasco R, Eser E, Dragomirecka E . Self and proxy rating of quality of life in adults with intellectual disabilities: results from the DISQOL study. Res Dev Disabil. 2010; 31(5):1015-26. DOI: 10.1016/j.ridd.2010.04.013. View

16.

Harris P, Taylor R, Thielke R, Payne J, Gonzalez N, Conde J . Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2008; 42(2):377-81. PMC: 2700030. DOI: 10.1016/j.jbi.2008.08.010. View

17.

Power M, Green A . Development of the WHOQOL disabilities module. Qual Life Res. 2010; 19(4):571-84. DOI: 10.1007/s11136-010-9616-6. View

18.

Norris M, Lecavalier L . Evaluating the use of exploratory factor analysis in developmental disability psychological research. J Autism Dev Disord. 2009; 40(1):8-20. DOI: 10.1007/s10803-009-0816-2. View

19.

Schafer J, Graham J . Missing data: our view of the state of the art. Psychol Methods. 2002; 7(2):147-77. View

20.

Williams S, Swanson M . The effect of reading ability and response formats on patients' abilities to respond to a patient satisfaction scale. J Contin Educ Nurs. 2002; 32(2):60-7. DOI: 10.3928/0022-0124-20010301-05. View