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)

Purpose: To assess the change in disease-specific quality of life associated with operating on patients with AIS, compared to non operative patients.

Methods: The Climent Quality of Life for Spinal Deformities Scale (QLPSD)was administered prospectively to 119 patients undergoing scoliosis surgery and 42 patients followed for bracing or observation. Change in quality of life after two years (adjusted for baseline quality of life) was used to estimate the short term benefit of scoliosis surgery. Bracing status was also analyzed at baseline as a covariate to determine its effect on improvement in quality of life.

Results: The operated group experienced an increase in quality of life of 4.3 points (95% C.I. 0.69, 7.88) on the 105 point Climent scale. Although statistically significant, this increase was lower than the 5.5 point cutoff we had defined a priori as clinically significant. Among the operative patients, there was no difference in the quality of life score between those braced at baseline (91.2) and those not (90.5) (p=0.73). In non operative patients, those braced had a baseline quality of life score of 88.2, and those not braced 83.3, this difference was also not significant (p=0.13).

Conclusions: Scoliosis surgery results in a small increase, of questionable clinical significance, in spine-related quality of life at two years.

Funding : Commerical funding

Funding Parties : This trial was funded by (in alphabetical order) Canadian Institutes of Health Research, DePuyAcroMed-Johnson & Johnson Medical Products, and Synthes, Canada.

Five surgeons independently rated clinical photographs of forty patients with AIS. Ratings of shoulder blades, shoulder symmetry, and waist symmetry were related to “overall appearance”, and were also correlated with rib prominence and Cobb angle. Because the components of surgeons’ ratings of appearance differed, this may lead to inconsistent recommendations regarding surgery.

To identify patient characteristics associated with surgeons’ ratings of patient physical deformity in Adolescent Idiopathic Scoliosis (AIS).

Five surgeons independently rated clinical photographs of forty patients with AIS. Surgeons separately rated the appearance of patients’ shoulder blades, shoulder symmetry, waist symmetry and also rated their “overall appearance” [in five categories from zero (best) to five (worst)]. The following clinical and radiographic data was also collected: rib prominence, vertebral rotation, shoulder height, spinal imbalance, Cobb angle, age, sex, and body mass index.

Surgeons’ mean rating for “overall appearance” was moderately correlated with rib prominence (r = 0.48), vertebral rotation (r = 0.44) and Cobb angle (r = 0.53). Surgeons’ rating of patients’ “overall appearance” was affected by each of: shoulder blades (p = 0.001), shoulder symmetry (p = 0.01) and waist symmetry (p = 0.001). However, each surgeon weighted components of patients’ appearance differently to arrive at their overall rating of appearance (p< 0.006).

Because patients’ physical appearance is an important element of surgical decision making, differences among surgeons could be contributing to inconsistent recommendations.

Surgeons’ ratings of physical appearance are based on surgeons’ ratings of patients’ shoulder blades, waist symmetry and shoulder symmetry but surgeons weight those elements differently.

Surgeon decision making is complicated. It is based on radiographs and subjective assessment. Patients’ appearance undoubtedly influences surgeon recommendation for surgery. We need to clarify surgeons’ ratings and improve the criteria for surgeon decision making.

Funding: This trial was funded by (in alphabetical order) The Canadian Institutes of Health Research, DePuyAcroMed-Johnson & Johnson Medical Products, and Synthes, Canada.

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.