Parents' and patients' preferences and concerns in idiopathic adolescent scoliosis - A cross-sectional preoperative analysis

Study Design. A multicenter cross-sectional study of parents' and patient's concerns and preferences regarding surgery for idiopathic scoliosis. Objectives. The purpose of this study was to analyze independently both the parents' and patients' assessments of of upcoming surgery for idiopathic s coliosis. Summary of Background Data. No group has recently reported querying patient s and their parents regarding expectations, preferences, reasons, and conce rns about and for surgical treatment of adolescent idiopathic scoliosis. Methods. Ninety-one sets of parents and patients were separately asked to c omplete questionnaires regarding the patients' upcoming idiopathic scoliosi s surgery. Patients' ages ranged from 9 to 18 years, and data were collecte d from four centers and seven surgeons (all active members of the Scoliosis Research Society) from April through December 1998. Thirty-nine questions covered concerns (n = 6), reasons for surgery (n = 14), expectations (n = 9 ), assessment of life as is (n = 5), and scar preference (n = 5). Results. The greatest concern about the surgery ex pressed by both parents and patients was neurologic deficit. The least concern for both was locatio n and appearance of the scar. The highest expectation and main reason for h aving the surgery was to reduce future pain and disability as an adult. Fam ilies would be either somewhat or very dissatisfied to spend the rest of li fe "as is." Conclusion. Although parents and patients had similar ratings and concerns, the parents' concerns were higher, and expectations were greater than the patients'.