DEVELOPMENT OF A SELF-REPORT HEALTH MEASURE FOR PERSONS WITH INTELLECTUAL DISABILITY
Background. Addressing the health and wellness needs of persons with intellectual disability (ID) is a critical area of health service deficiency. Providers, researchers, and policymakers need to develop more effective health services that reflect the principles of empowerment, self-determination and choice, issues critical to improving needed access to health care. To facilitate this process, appropriate research-based reliable and valid health measures are needed that accurately reflect the lived experiences of persons with disabilities, including those with ID.
When faced with a paucity of reliable and valid measures to assess health constructs of interest in a given population, the temptation is to use measures previously developed for a different cohort but untested in the target population. Alternatively, we might decide to change a word or two or to create a set of items that may have face validity but which have not undergone the careful scrutiny required of best practices in instrument development.2For example, many assessments used to evaluate HRQoL in persons with ID are inadequate; many have been developed for the general population and are not sufficiently validated for persons with ID. Even self-report measures specifically created for this population have challenges regarding construct complexity and comprehension. As a result, self-report measures are often ignored in favor of using proxies to answer questions for disabled individuals. The use of proxies, while well-intentioned, can distort the tool’s validity and negate the goals of self-determination and empowerment.
Methods. Utilizing best practices as it relates to instrument development,1 a mixed method qualitative/quantitative community-based participatory research (CBPR) approach was used to develop our HRQoL self-assessment tool. The guiding principles were self-determination and the need for items to reflect the 8 theory-based QoL domains identified by Schalock2 for persons with ID. Existing HRQoL measures (n=7) for persons with ID were critically evaluated for their content, presentation, and understanding. After collaboration with 17 persons with ID, 4 focus groups of parents/caregivers (n=16), and 4 partner community-based agencies serving people with ID, several iterations of the measure resulted in 38 HRQoL items that reflect Schalock’s 8 QoL domains. The groups also critiqued the use of a 5-point Likert graphic rating scale using words and pictorial gradients of fluid-filled cups (“none” to “full”) that enabled persons with ID to self-identify their experiences and satisfaction with a given HRQoL experience.
Results/Implications. The product of this initial instrument development study is a theory-based self-report HRQoL measure developed through the step-by-step CBPR involvement of our community-based collaborators. Our community partners have gained a HRQoL self-report measure suited to the abilities of community-based persons with ID, which can be used for clinical assessment and program evaluation. In addition, the HRQoL-38 is now ready for full psychometric testing.