SEARCHSYSTEMATIC_REVIEWsystematic review, public health

systematic_review·systematic review, public health, family medicine, psychiatry, neurology·PMC10490970

A realist review of health passports for Autistic adults

PLOS ONE · 9 authors, 5 centres

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TL;DR

This realist review synthesized 13 studies on Autism Health Passports (AHPs) for adults and found insufficient evidence that these tools reduce the health inequalities experienced by autistic people, largely due to poor study quality, heterogeneous interventions, and a lack of measured health outcomes.

Full summary

625 CHARS

This realist review systematically searched five databases and identified 162 records, with 13 included in the final synthesis. Only one included study was rated as high quality. Studies were heterogeneous in design, ranging from commentaries to quality improvement studies to a mixed-methods evaluation. Most AHP interventions had limited details on development processes, with communication preferences being the most frequent content. Mechanisms were often not explicitly stated and required inference by reviewers. Outcomes were measured in only four studies and focused primarily on AHP uptake rather than health impact.

STUDY TYPE

systematic_review

SPECIALTY

systematic review

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100% · A

ORIGINAL PAPER

PMC10490970

A realist review of health passports for Autistic adults

PLOS ONE

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ABSTRACT

Background Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. Methods We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the C ontext, M echanisms and O utcomes ( CMOs ) associated with each AHP tool. Findings 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. I nterventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. M echanisms were often not stated or were inferred by the reviewers and lacked specificity. O utcomes were included in four studies and were primarily focused on AHP uptake, rather than O utcomes which measured impact. Conclusion There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone in a healthcare C ontext that does not meet Autistic needs, without the inclusion of the local Autistic community developing the tool, and a wider intervention to reduce known barriers to health inequality, may mean that AHPs do not trigger any M echanisms, and thus cannot affect O utcomes.

CITATION EXPORT

Rebecca Ellis, Kathryn Williams, Amy Brown et al.. A realist review of health passports for Autistic adults. PLOS ONE. (2023). https://doi.org/10.1371/journal.pone.0279214

AUTHORS

9 · 5 CENTRES

Rebecca Ellis, Kathryn Williams, Amy Brown, Eleanor Healer, Aimee Grant, Ali B. Mahmoud, Ali B. Mahmoud, Ali B. Mahmoud, Ali B. Mahmoud

1 Centre for Lactation Infant Feeding and Translation (LIFT), Swansea University, Swansea, United Kingdom
2 Autistic UK CIC, Llandudno, Wales, United Kingdom
3 School of Social Sciences, Cardiff University, Cardiff, United Kingdom
4 School of Health and Social Care, Swansea University, Swansea, United Kingdom
St John’s University, UNITED STATES

EDITOR / REVIEWER

Ali B. Mahmoud