Divergence in Perceptions of Shared Decision Making in Pediatric Neuromuscular Scoliosis

Background. Shared decision making (SDM) is a promising but poorly understood approach toward improving care for children with medical complexity. The objective of this study is to assess the quality of SDM using self-reported and observer-based measures in pediatric orthopedic clinic visits for neuromuscular scoliosis (NMS) surgical treatment decisions. Methods. We recruited 18 children with NMS at ≥8 y old, a Cobb angle of ≥50°, and no prior spine surgery at a quaternary children’s hospital; their caregivers; and spine surgeons ( n = 3). We video-recorded visits and administered postencounter surveys to assess SDM quality via the DEEP-SDM coding scheme and SDM-Q-9 (parent) and SDM-Q-Doc (provider) validated survey measures (0 = poor-quality to 100 = high-quality SDM ). DEEP-SDM consists of 11 binary variables measuring whether a behavior occurred. We used convergent mixed methods to triangulate DEEP-SDM with survey outcomes and calculated caregiver-provider interrater reliability via prevalence-adjusted and bias-adjusted kappa for survey outcomes. Results. Only 1 child-caregiver-provider triad met all DEEP-SDM criteria (Cohen’s kappa = 0.78). All visits discussed treatment rationale, provider preferences, and caregiver understanding. Few visits assessed patient self-efficacy (4/18) and defined treatment options (8/18). Providers led most conversations except for those around caregiver preferences/values and caregiver understanding. Median (interquartile range) SDM-Q-9 and SDM-Q-Doc scores were 75.6 (66.7–91.6) and 80 (72.6–81.7), respectively. However, interrater reliability was poor for many items, including clarifying a need for decision making and eliciting caregiver preferences for decision involvement, both with kappa = 0 (confidence interval 0–0.35). Conclusions. In NMS treatment decisions, providers could more actively elicit parent preferences/values and self-efficacy. The poor caregiver–provider interrater reliability of SDM measures suggests current levels of SDM may be insufficient. Highlights Both observer- and self-rated measures overestimate and inadequately capture the quality of shared decision making for children with medical complexity. Better provider-driven elicitation of family preferences and values is needed. Assessment of decisional self-efficacy is often missed.