Shared Decision-Making During Initial Diagnostic and Treatment Planning Visits for Children with Autism Spectrum Disorder

OBJECTIVE: Although shared decision-making (SDM) can improve patient engagement, adherence, and outcomes, evidence on the use of SDM within the context of autism spectrum disorder (ASD) initial diagnosis and treatment planning remains limited. The goal of this study was to objectively assess the occurrence of SDM in these visits and to compare this assessment with parent and provider perceptions of SDM in the same encounter. METHODS: After audio-recording and transcribing initial clinical visits between parents (n = 22) and developmental behavioral pediatricians (n = 6) discussing the diagnosis of ASD and treatment options, we used the OPTION(5 Item) scale to assess the occurrence of SDM. Afterward, parents and providers completed the OPTION(5 Item), and parents also participated in a semistructured qualitative interview. Analysis consisted of descriptive statistics for OPTION(5 Item) scores and a modified grounded theory framework for interviews. RESULTS: Low levels of SDM were observed, with 41% of visits having no elements of SDM. On average, visits scored 1.1 of a possible 20 points on the OPTION(5 Item) scale for SDM. By contrast, parents and providers indicated on the OPTION(5 Item) scale that providers made a “moderate” to “skilled” effort to engage parents in SDM. Qualitative interviews with parents were consistent with their OPTION(5 Item) ratings. CONCLUSION: The level of SDM determined by parent and provider reports was higher than the level of SDM determined by objective observation using a standard validated rating method. The findings reinforce the need for further research into barriers and facilitators of SDM methods and outcomes within ASD.