Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults.
Christina Nicolaidis, Kelly Y Zhen, Junghee Lee and 6 others
PMID 33103457WHAT IT FOUND
Six patient-reported tools for autistic adults showed strong reliability and validity.
The self-efficacy scale splits into two parts: skills the patient controls, and those depending on the provider. These tools help evaluate healthcare interventions but do not yet prove an intervention works.
Key findings
01The set of six instruments demonstrated strong content validity, construct validity, and internal consistency reliability.
02The Health and Healthcare Self-Efficacy Scale has a two-factor structure: Individual Healthcare Self-Efficacy and Relationship-Dependent Healthcare Self-Efficacy.
03Participants who reported unmet healthcare needs or four or more barriers had lower self-efficacy, less visit preparedness, and fewer accommodations.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study used cross-sectional data, so it cannot determine if these instruments effectively measure change over time or causality. The response rate was low (17%), which may introduce participation bias. The proxy-report subgroup was small (50 participants), limiting confidence in findings for patients who cannot self-report. The study was conducted only in the United States with English-speaking participants; validity in other cultures or languages is unknown. Responsiveness to change was not assessed in this specific analysis, though prior studies suggested it for some scales.
Declared interests
The study was supported by the NIH. The AASPIRE community-academic partnership, which includes autistic adults and healthcare providers, collaborated as equal partners on design, instrument creation, and interpretation. No commercial conflicts were reported.
The easy way to misread this
Do not assume these instruments prove a treatment works. They are tools to measure patient experience and barriers, not evidence of clinical efficacy. Also, do not use the total score for the self-efficacy scale; it must be split into its two distinct subscales to be accurate.