Optimizing Care for Autistic Patients in Health Care Settings: A Scoping Review and Call to Action

Within healthcare settings, morbidity and mortality for autistic individuals is high, with unmet health needs despite greater healthcare utilization.We conducted a scoping review of interventions designed to improve the healthcare experiences of autistic individuals and assessed the methodology and outcomes used to evaluate them.Literature from January 2005 to August 2023 was searched using PubMed, EMBASE, CINAHL, PsycINFO as well as hand searching.Studies included described an intervention for autistic individuals in inpatient or outpatient healthcare settings and evaluated the intervention using standardized methodology.Results were exported to Covidence software. Ten reviewers completed abstract screening, full text review, and then systematic data extraction of the remaining articles. Two reviewers evaluated each article at each stage, with a third reviewer arbitrating differences.A total of 49 studies, including 6 randomized controlled trials (RCTs) were included. Thirty-four (69%) took place in dental, psychiatric, or procedural settings. Interventions primarily focused on visit preparation and comprehensive care plans or pathways (N = 38, 78%). The most frequent outcome was procedural compliance (N=15), followed by improved problem behaviors (N=8).Two studies involved autistic individuals and caregivers in study design, and no studies assessed racial/ethnic diversity on intervention impact.Articles may have been missed based on our search strategy and the key words chosen.Well-designed evaluations of interventions to support autistic individuals in pediatric healthcare settings are limited. There is a need to conduct large multi-site intervention implementation studies.