The Healthcare Experience of Autistic Patients in Orthopaedic Surgery: A Survey Study of Autistic Patients' Parents, Caregivers, and Orthopaedic Providers.

Abstract

Background: Autistic patients can have different communication and sensory needs, potentially making orthopaedic visits stressful. This study evaluated which factors play the greatest role in autistic patients' comfort and overall experience in orthopaedic settings by surveying the parents, caregivers, and orthopaedic providers of these patients.

Methods: We developed two online surveys focused on the experience of autistic patients in orthopaedic settings: one for parents/caregivers and another for orthopaedic surgeons. Parents/caregivers of patients under 26 years of age with a diagnosis of autism spectrum disorder (ASD) and an orthopaedic visit at a single pediatric institution between 2017 and 2022 were eligible. The provider survey was sent via email to members of the Pediatric Orthopaedic Society of North America (POSNA).

Results: Parent/caregiver survey: In total, 83 parents/caregivers (mean patient age: 12, 77% male) provided complete responses. The most anxiety-provoking situations included blood draws (49% of patients beyond neutral anxiety level), loud/unfamiliar noises (42%), getting imaging (38%), casting (35%), and cast removal (34%). Parents/caregivers noted that purposeful eye contact, explanations in advance, and use of technology helped improve patient comfort.Provider survey: In total, 61 orthopaedic surgeons responded. The majority of providers reported being aware of an ASD diagnosis in their patients some (48%) or most (40%) of the time. Situations that make autistic patients more anxious/uncomfortable than nonautistic patients included cast removal (80% of respondents), loud/unexpected sounds (77%), imaging (70%), and the physical exam (62%). The most common accommodations in place included child life specialists (53%) and ear plugs/headphones (51%); 18% reported no accommodations. Most providers changed their approach to visits with autistic patients, including discussions with parent/caregiver about patient's preferences (66%) and more time in the room (54%).

Conclusions: Orthopaedic practices looking to improve autistic patient experience can prioritize interventions that lower the sensory demands of cast removal, brace fitting, and radiologic imaging. Orthopaedic surgeons are broadly cognizant of the challenges autistic patients face during clinical visits, but improved awareness and accommodations are necessary.

Key concepts: (1)Autistic patients can have different communication and sensory needs, potentially making orthopaedic visits stressful and uncomfortable.(2)We surveyed parents/caregivers of autistic patients treated at a single pediatric institution, as well as a national sample of orthopaedic surgeons, regarding the experiences of autistic patients in orthopaedic settings and the factors that make the greatest impact on their experiences.(3)According to autistic patients' parents/caregivers, the most anxiety-provoking situations were those that involved high sensory loads and/or discomfort, though patient experience can be improved with purposeful eye contact, thorough explanations, and use of technology or distraction devices.(4)According to orthopaedic providers, most practices used accommodations to improve autistic patient experience, though 18% of practices had no accommodations in place and provider approaches to visits with autistic patients were variable.(5)Orthopaedic practices looking to improve autistic patient experience can prioritize interventions that lower the sensory demands of clinical visits and expand baseline accommodations available.

Level of evidence: IV.