Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction).
Kristen T MacKenzie, Kelly B Beck, Shaun M Eack and 3 others
PMID 38291244WHAT IT FOUND
Cognitive interviews with 43 autistic adults, adults with other developmental disabilities, and caregivers led to major revisions of a new outcome measure.
The original response scales were confusing and the three-month timeframe was too short for many tasks, so items were simplified and restructured.
Key findings
01Participants found the original response options difficult to use because tasks often involved mixed levels of independence and support, leading to the removal of the engagement scale and simplification of the independence scale.
02The three-month timeframe was problematic for infrequent tasks like voting or taxes, so highly temporal items were removed or revised.
03Caregivers felt it was inappropriate to rate the satisfaction of the adults they cared for, so all satisfaction items were removed from the proxy-report version.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The measure has not been psychometrically validated; this paper only reports the item generation and cognitive interview phase. The sample size for cognitive interviews was small (n = 43). The authors state that the measure is not intended to provide a total score, but rather separate subscales, which may complicate its use in some clinical settings. The proxy-report version lacks satisfaction items, limiting its ability to capture the patient's perspective on quality of life when self-report is not possible.
Declared interests
The funding source and conflicts of interest are not reported in the provided text.
The easy way to misread this
Do not use the REALS in clinical practice or research yet. The measure has only undergone cognitive testing for item clarity and relevance. It has not been validated for reliability or sensitivity to change, and the authors explicitly state that psychometric testing is the next step.