What Do Patients and Parents Know About Surgery for Adolescent Idiopathic Scoliosis?

Abstract

Questionnaire. The purpose of this study was to develop a reliable and valid questionnaire to assess patient and parent knowledge concerning risks, benefits, and complications of surgery for adolescent idiopathic scoliosis (AIS). Families of adolescents with moderate to severe AIS are required to make an important decision on whether to proceed with surgery. Prior research has found families have substantial need for information with regard to surgery, and these needs may not be met by the health care system. The study sample consisted of AIS patients and their parents. The questionnaire was administered to patients (and their parents) who were either actively braced (Cobb angle 30 degrees-50 degrees) or were within 1 year of surgery. The questionnaires were completed 2 weeks apart to test reliability of responses. To test construct validity, we hypothesized that patients who were postoperative would know more about the risks and benefits of surgery for AIS than those who were currently braced. Postoperative patients' and parents' scores were significantly greater than bracing patients' and parents' scores (P < 0.0001). Parents and patients reliably completed the questionnaires 2 weeks apart (Intraclass coefficient 0.83 and 0.68; CI = 0.83-0.96 and 0.45-0.83, respectively). The questionnaire was valid and reliable in evaluating patients' and parents' knowledge of AIS surgery and may be used in evaluating educational interventions for patients and parents.