Patient-reported outcome measures for young people with developmental disabilities: incorporation of design features to reduce cognitive demands

Abstract

Use of patient-reported outcome measures (PROMs) may increase the involvement of young people with developmental disabilities in their healthcare decisions and healthcare-related research. Young people with developmental disabilities may have difficulty completing PROMs because of extraneous assessment demands that require additional cognitive processes. However, PROM design features may mitigate the impact of these demands. We identified and evaluated six pediatric PROMs of self-care and domestic life tasks for the incorporation of suggested design features that can reduce cognitive demands. PROMs incorporated an average of 6 out of 11 content, 7 out of 14 layout, and 2 out of 9 administration features. This critical review identified two primary gaps in PROM design: (1) examples and visuals were not optimized to reduce cognitive demands; and (2) administration features that support young people's motivation and self-efficacy and reduce frustration were underutilized. Because assessment demands impact the validity of PROMs, clinicians should prospectively consider the impact of these demands when selecting PROMs and interpreting scores.

What this paper adds: Patient-reported outcome measure (PROM) design features can reduce assessment demands related to cognitive processes. Pediatric PROMs underutilize design features that decrease cognitive demands of self-reporting.

Figure 1

Summary of methods to identify and evaluate PROMs PROM, Patient Reported Outcome Measure; ICF-CY, International Classification of Functioning – Children and Youth; PROMIS UE-CAT, Patient Reported Outcomes Measurement Information System Upper Extremity – Computer Adaptive Test; PROMIS UE-SF, Patient Reported Outcomes Measurement Information System Upper Extremity – Short Form; TRAQ, Transition Readiness Assessment Questionnaire; LIFE-H 14+, Life Habits Questionnaire for ages 14+; PACS, Pediatric Activity Card Sort; PEGS, Perceived Efficacy and Goal Setting System; QYPP, Questionnaire of Young People’s Participation.