Objective: To describe the characteristics of treatment decisions to address challenging behaviors in children with autism spectrum disorder (ASD).
Methods: Parents of children aged 4 to 15 years with ASD seen in a developmental behavioral pediatric (DBP) clinic completed validated measures to characterize their child's behaviors and their own level of stress. Parents reported their treatment priority before the visit. During the visit, we assessed shared decision making (SDM) using the Observing Patient Involvement (OPTION) scale and alignment of the clinician's treatment plan with the parent's priority. Before and after the visit, parents rated their uncertainty about the treatment plan using the Decisional Conflict Scale (DCS). We calculated descriptive statistics for the measures.
Results: Fifty-four families participated. Children were a mean (SD) age of 8.8 (3.3) years, and 87% were male. Children had a variety of behavioral challenges, and parents reported high levels of stress. Commonly reported parent treatment priorities were hyperactivity, tantrums, anxiety, and poor social skills. Levels of SDM were low, with a mean (SD) OPTION score of 24.5 (9.7). Parent priorities were addressed in 65% of treatment plans. Approximately 69% of parents had elevated DCS scores before the visit. Although levels of decisional conflict were lower after the visit compared with before the visit (p < 0.03), 46% of parents continued to report high scores on the DCS.
Conclusion: Parents leave DBP visits with feelings of uncertainty about treatment decisions and with treatment plans that do not always address their priorities. SDM interventions hold promise to improve the quality of ASD treatment decisions.