Shared Decision Making in Pediatrics: A Pilot and Feasibility Project

Shared decision making (SDM), which accommodates patient preferences and values in making decisions about their care, has been used extensively in adult health care, but less so in pediatrics. SDM in pediatrics differs since parents’ involvement in decision making changes as children mature and become increasingly capable of informed decision making. This pilot and feasibility study evaluated an SDM approach to 2 pediatric treatment decisions: allergen immunotherapy for children with environmental allergies and spinal fusion surgery for children with scoliosis (curved spine) as a result of severe neuromuscular conditions. Fifteen patients with environmental allergies and 11 with neuromuscular scoliosis participated along with their parents. Families reviewed carefully constructed decision aids for the respective conditions, which were designed to enhance the quality of their decision making, provide information about the options and outcomes, and help clarify their personal values and preferences. Pre–post comparisons indicated significant increases in parental knowledge of treatment information for their child’s condition. Additional measures indicated high satisfaction with the SDM intervention and better decision quality (alignment of values and choice) for both conditions. Clinicians were also highly satisfied with the intervention. Exploratory findings suggested better engagement with allergen immunotherapy for children who experienced SDM relative to similar patients who did not. Completion of follow-up measures was poor, especially among those who decided against the treatment option under consideration. The results support the feasibility, acceptability, and effectiveness of SDM in pediatrics. Future approaches to increasing retention and maximizing effectiveness of SDM interventions in pediatrics are discussed.