Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults

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Nicolaidis, C., Zhen, K. Y., Lee, J., Raymaker, D. M., Kapp, S. K., Croen, L. A., Urbanowicz, A., Maslak, J., & Scharer, M. (2020). Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults. Autism, 25(3), 786-799. https://doi.org/10.1177/1362361320967178

Publication date: 25 Oct 2020 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
9
Publication authors identified as autistic
3 / 9 (33.3%)
  1. Christina Nicolaidis
  2. Kelly Y. Zhen
  3. Junghee Lee
  4. Dora M. Raymaker *
  5. Steven K. Kapp *
  1. Lisa A. Croen
  2. Anna Urbanowicz
  3. Joelle Maslak *
  4. Mirah Scharer

Abstract

There is a growing recognition of the need for interventions to improve the healthcare of autistic adults. However, there is a dearth of validated measures to evaluate such interventions. Our objectives were to use a community-based participatory research approach to create an accessible set of patient- and proxy-reported instruments to measure healthcare outcomes and potential intervention targets in autistic adults and to assess the instruments’ psychometric characteristics, including content validity, construct validity, and internal consistency reliability. We administered a survey to 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (194 participating directly and 50 participating via a proxy reporter). Community partners ensured items were easy to understand and captured the intended construct. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Visit Preparedness Scale, Healthcare Accommodations Scale, and Patient–Provider Communication Scale were each found to have a single factor. The AASPIRE Health and Healthcare Self-Efficacy Scale had two factors: Individual Healthcare Self-Efficacy and Relationship-Dependent Healthcare Self-Efficacy. Both patient- and proxy-reported versions of all scales had good to excellent internal consistency reliability, with alphas ranging from 0.81 to 0.96. The scales were associated with the Barriers to Healthcare Checklist and the Unmet Healthcare Needs Checklist in the hypothesized directions. Lay Abstract Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient–provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults.

Bibliography cited by this reference

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 01:00.

Cited references
46
With a DOI
38
Without a DOI, from raw bibliography text
6
10 / 46 (21.7%) cited references include at least one author identified as autistic.
References with data to complete
3 / 46 (6.5%)
References with detected author names
43 / 46 (93.5%)
Without detected author names
3
Without a structured title
3
Without a stable identifier
3
References with raw author names still to review
3
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
215
From DOI or external metadata
215
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
9
90 / 215 (41.9%) names are linked to an author already present in AutiHub. 125 / 215 (58.1%) names are not yet linked.
Names linked to a person identified as autistic
37 / 215 (17.2%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 37 / 90 (41.1%). Distinct people identified as autistic: 12 / 151 (7.9%).
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