Development of a Cognitively Accessible Self-Report Measure of Health-Related Quality of Life in People With Intellectual and Developmental Disabilities

PURPOSE: Intellectual and developmental disabilities (IDD) are characterized by significant limitations in cognitive, social, and practical skills. Although progress has been made in alleviating debilitating symptoms associated with IDD, our ability to assess the efficacy of health interventions is limited because of a lack of reliable and accessible outcome measures for people with a broad range of cognitive and physical abilities. Rather than using proxy reports, we need to empower people with IDD to self-identify indicators of their health-related quality of life (HRQoL).

HRQoL is a multidimensional construct that includes physical, mental, emotional, and social functioning. It is a strong predictor of mortality and morbidity and, consequently, is increasingly assessed in research. Yet, to date, the availability of cognitively accessible HRQoL measures for people with IDD is severely limited. The purpose of our interdisciplinary research was to develop a reliable and valid paper-and-pencil self-report measure of HRQoL for people with IDD, the HRQoL–IDD, using community-based participatory research (CBPR).

DESIGN: The initial measurement development process used a mixed methods CBPR design. Reflecting the disability movement’s maxim “Nothing About Us Without Us,” the HRQoL–IDD was developed and tested with input and feedback from people with IDD, their caregivers, and agency partners.

The analysis portion of our project used a descriptive nonexperimental quantitative design. Participants were recruited from our community research partners and had to be adults (age 18+) and to have a reported diagnosis of IDD.

METHOD: Guiding principles for the measure were ease of use and the eight theory-based domains identified by Schalock et al. for people with IDD. The resulting measure, the HRQoL–IDD, has 42 items. The tool asks respondents to indicate the extent to which an item is of concern on a 5-point illustrated Likert scale and their desire to work on the area. Higher scores indicate more satisfactory HRQoL and greater desire to work on change. Descriptive and inferential statistics (e.g., chi-square tests, correlations, t tests, analyses of variance, and Cronbach’s alphas) were used to examine data.

RESULTS: To date, 103 people with IDD (50 men, 93% White, aged 18–75; 65.9% with mild, 31.8% with moderate, and 2.3% with severe IDD) have completed the paper-and-pencil measure. Average completion time was 24.5 minutes (range = 8–90) and was not influenced by functional ability (p = .40) or need for assistance (p = .84; 15% needed assistance). Descriptive statistics support previous IDD research: Respondents’ self-reported HRQoL was positive, especially in the areas of self-determination, rights, and emotional and material well-being. The majority of participants were able to respond to the HRQoL either independently or with minimal assistance for motor skills required to respond or for low literacy.

Future plans include development and testing of a digitized version of the HRQoL–IDD with a national sample of 700 people with IDD. We hypothesize that a digitized, audio-enabled, self-reported HRQoL–IDD on a touch screen device will increase accessibility to a wider range of people with IDD, including those with limited reading skills.

CONCLUSION: True client-centered practice and research can be achieved only when information is accessed directly through the client. Initial analysis of the HRQoL–IDD is positive. The measure offers occupational therapy practitioners a way to minimize the practice of proxy reports when working with people with IDD through the use of a theory-based, cognitively accessible self-report measure of HRQoL.

References

Abbeduto, L. (2014). Reflecting on the past, looking to the future. American Journal of Intellectual and Developmental Disability, 119, 493–495. https://doi.org/10.1352/1944-7558-119.6.493

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, 267–275. https://doi.org/10.1111/j.1525-1497.2005.00291.x

Fujiura, G. T. (2012). Self-reported health of people with intellectual disability. Intellectual and Developmental Disabilities, 50, 352–369. https://doi.org/10.1352/1934-9556-50.4.352