Surgeon and Caregiver Agreement on the Goals and Indications for Scoliosis Surgery in Children With Cerebral Palsy

Study Design: Prospective multicenter comparative study. Objectives: We aimed 1) to survey surgeons and caregivers to rank the surgical indications for spinal fusion of pediatric patients with neuromuscular scoliosis secondary to cerebral palsy in order of importance and 2) to characterize the agreement of surgeons and caregivers on major (top three) indications. Summary of Background Data: Surgery for spinal deformity in children with cerebral palsy is a multifaceted and individualized decision that may lead to miscommunication during informed consent. Little data exist on communication effectiveness between surgeon and caregiver during preoperative discussion. Methods: This is a multicenter, prospective survey of Harms Study Group patient caregivers and their surgeons. Participants ranked their most important of 15 indications in descending level of importance, where the top 3 selections were considered major indications for surgery for the particular patient in question. Demographic and other perioperative factors were recorded. Surgeon-caregiver agreement on major indications was determined, taking into account preoperative factors and intersurgeon differences. Results: 126 surgeon-caregiver pairs responded. The greatest percentage agreement that an indication was major was “to improve sitting” (69.0% major, 0.8% nonmajor), followed by “to prevent pulmonary compromise” (33.3% major, 24.6% nonmajor), “to improve pain” (31.7% major, 20.6% nonmajor), and “to improve head control/position” (20.7% major, 69.0% nonmajor). Preoperative pain showed an association with surgeon-caregiver agreement on pain as a major indication (p=.004), and intersurgeon differences in agreement on gastrointestinal and pain considerations existed (p=.002, p=.007, respectively). Conclusions: Surgeon-caregiver agreement is greater where literature support for a particular surgical indication is strong (ie, spinal fusion's known improvement of sitting posture in children with neuromuscular scoliosis). Stronger literature support may bolster surgeons’ confidence in recommending a particular procedure, fostering greater communication, understanding, and agreement on surgical necessity between caregivers and surgeons. Level of Evidence: Level II, prospective comparative study.