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 upcoming surgery for idiopathic scoliosis. Summary of Background Data. No group has recently reported querying patients and their parents regarding expectations, preferences, reasons, and concerns about and for surgical treatment of adolescent idiopathic scoliosis. Methods. Ninety-one sets of parents and patients were separately asked to complete questionnaires regarding the patients' upcoming idiopathic scoliosis surgery. Patients' ages ranged from 9 to 18 years, and data were collected 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 expressed by both parents and patients was neurologic deficit. The least concern for both was location and appearance of the scar. The highest expectation and main reason for having the surgery was to reduce future pain and disability as an adult. Families would be either somewhat or very dissatisfied to spend the rest of life 'as is.' Conclusion. Although parents and patients had similar ratings and concerns, the parents' concerns were higher, and expectations were greater than the patients'.