Development and Validation of a Patient and Caregiver Expectations Survey for Posterior Spinal Fusion for Adolescent Idiopathic Scoliosis

BACKGROUND: Adolescent idiopathic scoliosis (AIS), a condition that can affect body image and psychological well-being, can be treated with posterior spinal fusion (PSF) to prevent later pain and respiratory distress when curves become severe. Efforts have been made to identify factors associated with improved patient-reported outcomes (PROs) after PSF. Across other elective orthopaedic procedures preoperative expectations have been shown to be associated with PROs. A methodical way of measuring expectations is needed to develop methods to modify them and ultimately improve outcomes. The purpose of this study is to develop and validate a survey measuring patient and guardian expectations for PSF in patients with AIS. METHODS: Patients undergoing PSF for AIS and their guardians were preoperatively interviewed to collect expectations. Qualitative research techniques were used to create two 10-item Likert-scale surveys, one for patients and one for guardians. To validate the surveys, additional patients/guardians completed the survey twice preoperatively a week apart. Cohen quadratic kappa was calculated for each survey item. RESULTS: A total of 15 patients and guardians were included in the survey development phase and an additional 15 patients and guardians were included in the survey validation phase. The 3 most cited expectations in interviews were return to physical/sporting activities, improvement in pain, and changes in physical appearance. On the validation surveys, guardians had substantial to great agreement (average κ=0.74), and patients had moderate to great agreement (average κ=0.64). Patients and guardians had great agreement with each other (κ>0.8) on only one question-avoid future medical treatment-substantial agreement (κ=0.61 to 0.8) on 2 questions-be more confident in appearance and full recovery without mobility or appearance issues-and poor to moderate agreement (κ<0.6) throughout the rest of the survey. CONCLUSIONS: It is possible to develop a preoperative expectation survey in patients undergoing PSF for AIS. There is moderate to great agreement between baseline and validation surveys for patients and guardians, but patient and guardian expectations differ. These surveys can help surgeons better counsel families to align expectations and potentially improve outcomes and satisfaction after PSF. LEVEL OF EVIDENCE: Level IV.