Using principles of community-based participatory research we developed a measure of health-related quality of life (HRQoL) for individuals with intellectual and developmental disability (IDD). The HRQoL-IDD-16 is a measure of health-related quality of life for individuals with IDD. The response format depicts a gradient of fluid-filled cups (‘‘none’’ to ‘‘full’’) to represent frequency of experience of each item on a 5-point scale. The HRQoL-IDD-16 was developed as a self-reported subjective health-related quality-of-life measure for adults with intellectual disability. The measure is appropriate for research and/or community-based administration with minimal supervision and limited respondent and agency burden. 

Example questions on the Measure:

Example answers on the Measure:

Please fill out the following form to request the measure:

    Your Name

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    Intended Purpose

    We'd like to encourage users of the HRQOL to return de-identified data from your clients or research participants to us. With that data, we can continue to refine the HRQoL-IDD by monitoring internal consistency and identify any item-specific problems. Data should be emailed to [email protected].

    By downloading the HRQoL-IDD-16 I attest that I intend to use (without modifying) the HRQoL-IDD-16 instrument in clinical care or research.I am willing to supply the authors with data about the performance of the measure.

    Note: Once your request has been received and approved, you will receive the measure and instruction manual.