How do primary care providers and autistic adults want to improve their primary care? A Delphi-study.
Eva B Warreman, Wietske A Ester, Hilde M Geurts and 2 others
PMID 37194206WHAT IT FOUND
Autistic adults rated many primary care barriers as more impactful than Dutch providers did.
Both groups agreed seeing the same provider is most useful; longer appointments, online autism-aid lists and provider education were rated useful and feasible; a stigmatization flyer was not.
Key findings
01Autistic adults rated most barriers as having higher negative impact than primary care providers did, with the largest difference for stigmatizing views.
02Both groups rated seeing the same primary care provider as the most useful recommendation across all categories, and rated it feasible.
03Most recommendations were rated useful, except a flyer about stigmatization, while feasibility varied across the 22 recommendations.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study was set in Dutch primary care, so barriers and recommendations may not match other countries or healthcare systems. It included only adults, so it does not tell us what autistic children or their parents need. Participants had to complete the questionnaires independently, so the results may not apply to autistic adults with higher support needs. The authors had difficulty recruiting participants from different ethnic and cultural backgrounds. Autism status was self-reported, and the study did not measure how familiar providers were with autistic people. The study rated usefulness and feasibility only. It did not test whether the recommendations improve access, care or outcomes.
Declared interests
The authors declared no potential conflicts of interest. The study was supported by a grant from the Netherlands Organization for Health Research and Development (NWO-ZonMw).
The easy way to misread this
Do not read these consensus recommendations as evidence that they improve autism primary care. The study only rated usefulness and feasibility; it did not implement or test the recommendations, so no patient outcomes were measured.