Little is known about the priorities of patients undergoing surgery for idiopathic scoliosis. This study explores the priorities of adolescents and contrasts them from their parents and their surgeons. Fifty-five pairs of children and parents underwent structured interviews separately, to explore their concerns, desires and expectations both about scoliosis and surgery. Surgeons of these patients and from across Canada completed a similar questionnaire. We found a significant mismatch between child, parent and surgeon priorities. This mismatch has implications on matters relating to decision making, informed consent, understanding of patient satisfaction, and measuring outcomes that are meaningful to patients.

To define the concerns, desires (goals) and expectations of adolescents undergoing surgery for idiopathic scoliosis and to contrast them from their parents and surgeons.

We conducted structured interviews of fifty-five pairs of adolescents and parents separately. The questionnaire had sections on concerns, desires and expectations regarding both scoliosis and surgery, with items pertaining to present and future effects on appearance, pain, physical and psychosocial function and health. Parents also reported what their child’s responses might be. Their surgeons (four) and paediatric spine surgeons (twenty-four) across Canada completed the same questionnaire. Analysis involved repeated measures ANOVA, intra-class correlation coefficients and kappa statistics.

Parents were more concerned than their children about present and future consequences of scoliosis. Surgeons were least concerned. Children, parents and surgeons agreed that improving physical appearance was the primary goal of surgery. Surgeons agreed very little about the natural history of scoliosis, other goals of surgery and the likelihood of specific outcomes. Parents wanted more from surgery than their children. Parents and patients had greater expectations of surgery than surgeons. Adolescents had different priorities from their parents, but parents were aware of this difference and knew what their child’s priorities were.

Adolescents with idiopathic scoliosis, their parents and surgeons have different priorities. This mismatch might stem from uncertainty about the natural history of idiopathic scoliosis for individual patients.

Knowledge of patient priorities is vital for shared decision making, informed consent, understanding patient satisfaction, and for measuring outcomes that matter most to patients.

Funding:

Orthopaedic Research & Education Foundation: (Unni. G. Narayanan: AAOS/OREF Health Services research Fellowship award)

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.