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Patient-reported outcome measures for young people with developmental disabilities: incorporation of design features
Ariel E Schwartz1, Jessica M Kramer2, Angela L Longo2
1PhD Program in Rehabilitation Sciences, Boston University, Boston, MA, USA.
Insights
Patient-reported outcome measures (PROMs) can improve healthcare engagement for young people with developmental disabilities. However, current pediatric PROMs often fail to optimize design features, increasing cognitive demands and potentially impacting results.
Area of Science:
- Health Services Research
- Patient-Reported Outcomes
- Developmental Disabilities
Background:
- Patient-reported outcome measures (PROMs) are crucial for involving young people with developmental disabilities in healthcare and research.
- Cognitive demands from assessment requirements can hinder PROMs completion in this population.
- PROM design features can potentially mitigate these cognitive demands.
Purpose of the Study:
- To evaluate pediatric PROMs for self-care and domestic life tasks.
- To assess the incorporation of design features that reduce cognitive demands.
- To identify gaps in PROM design for young people with developmental disabilities.
Main Methods:
- A critical review of six pediatric PROMs.
- Evaluation of content, layout, and administration features.
- Assessment of features designed to reduce cognitive demands.
Main Results:
- PROMs included an average of 6/11 content, 7/14 layout, and 2/9 administration features.
- Identified gaps: suboptimal use of examples/visuals and underutilization of motivational/supportive administration features.
- These design limitations may increase cognitive demands for users.
Conclusions:
- Pediatric PROMs underutilize design features that can decrease cognitive demands.
- Optimizing PROM design is essential for valid self-reporting in young people with developmental disabilities.
- Clinicians must consider assessment demands when selecting and interpreting PROMs.
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.
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