Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale

Abstract

Our objective was to develop a measure of healthcare providers’ self-efficacy in providing healthcare to autistic adults and to better understand their training needs. We used a community-based participatory research approach with academic researchers, autistic adults, supporters, and healthcare providers. We developed a one-page questionnaire which included the new 6-item self-efficacy scale, two items on how challenging and rewarding it is to provide care to autistic adults, and seven items on provider characteristics. We surveyed 143 healthcare providers from eight primary care clinics in Oregon and California, United States. Preliminary psychometric testing found the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Adult Autism Healthcare Provider Self-Efficacy Scale to have good internal consistency reliability (Cronbach’s alpha 0.87) and consist of a single factor. A priori hypothesis testing found correlations in the expected directions. Only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients and identify and make accommodations. Lay abstract The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers’ confidence (or “self-efficacy”) in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers’ training needs most effectively.

Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study

“…Our study stratifies individual barriers from the perspective of the autistic person, which addresses healthcare provider training needs identified in Nicolaidis[4]. It couples these barriers to the self-reported adverse consequences, highlighting some of the factors which may lead to excess morbidity and mortality in the autistic population.…”

“…Most autistic people are adult, do not have intellectual disability and are likely to be undiagnosed[2]. Doctors may underestimate of the number of autistic patients under their care[3,4].…”

“…Communication skills training for health care providers is the most pressing need[4]. GPs[22] and hospital specialists[3] self-report difficulties communicating with autistic patients.…”

“…GPs[22] and hospital specialists[3] self-report difficulties communicating with autistic patients. Only 25% of primary healthcare providers reported high confidence in communicating with autistic adult patients, or identifying and making necessary accommodations[4].…”

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

“…This article focuses on the constructs that are measured by patient or proxy report. Another paper discusses constructs that are reported by healthcare providers (Nicolaidis et al, 2020). Future work will explore the relationship between these measures, healthcare utilization, and health and will assess how interventions may affect these constructs.…”