Introduction and Aims: Little is known about the priorities of patients undergoing surgery for idiopathic scoliosis. Surgery, a major undertaking, is recommended to correct or prevent worsening deformity, and to avoid uncertain future consequences. This study aims to define the concerns, desires (goals) and expectations of adolescents undergoing surgery for idiopathic scoliosis.
Method: We conducted structured interviews of 55 pairs of adolescents, who had spinal fusion, and their parents separately. The questionnaire included sections on concerns, desires and expectations regarding both scoliosis and surgery, with items about present and future effects on appearance, pain, physical and psychosocial function and health. Parents reported both their priorities and what their child’s responses might be. Patients’ surgeons (four) completed the same questionnaire. Paediatric spine surgeons across Canada (24) were also surveyed. Surgeons were asked to respond as if their child was a patient. Analysis involved repeated measures ANOVA, intra-class correlation coefficients and kappa statistics.
Results: Parents were significantly more concerned than their children about present and future consequences of scoliosis and of spine fusion surgery. Surgeons were the least concerned about the consequences of scoliosis, even when asked to respond as if their child was the patient. Children, their parents and surgeons did agree that improving physical appearance was the primary goal of surgery. However, surgeons agreed very little among themselves about the natural history of scoliosis, other goals of surgery and about the likelihood of specific outcomes. Consequently, with the exception of improving physical appearance, surgeons’ goals and expectations of surgery were significantly different from those of either the patients or parents. Parents consistently wanted and expected more from surgery than their children. Parents and patients had greater expectations of surgery than surgeons. Although adolescents had different priorities from their parents, parents were aware of these differences and reliably predicted what their children’s priorities were.
Conclusion: Idiopathic scoliosis patients, their parents, and surgeons have different priorities. Surgeons’ opinions about the natural history of scoliosis and treatment goals are discordant. These findings have important implications on shared decision-making and informed consent, and might contribute to better understanding and measurement of outcomes that matter to patients, including satisfaction.
