The primary goal of this study was to understand the subjective impact of a diagnosis of Simple Bone Cyst on children with regards to activity participation and psychosocial development. We aimed to explore the concepts of labeling, embodiment and activity participation to understand the impact of SBC.

This was a qualitative study. Ten children between the ages of 4 and 17 years with SBC and their families participated in semi-structured interviews related to activity participation, social interactions and psychological impact of SBC. Interview questions were derived from psychology, sociology and philosophy literatures pertaining to illness and activity, sense of embodiment, self-concept and interactions with the social environment. Interviews were transcribed and analyzed using thematic analysis.

First, children and families view SBC as an injury more than an illness and did not experience labeling or significant changes in embodiment. Second, SBCs cause anxiety in children related fear of fracture or pain, however normal function and activity participation were maintained. Third, there were significant shortcomings identified in the communication and the decision-making process between families and physicians regarding SBC management.

SBC as a benign disease does not neatly fit into the category of illness or injury based on children's experiences. Children who previously perceived themselves as normal feel different and not normal following diagnosis with SBC. The experience of parents is largely one of anxiety, and much of that anxiety is derived from the uncertainty over the treatment plans for their child.

The proposed framework of normality allows for the more temporary and fluid changes in perception experienced by the children in our study. The results of this study suggest that the current decision-making process in SBC is unsatisfactory leading to anxiety and worry. Parents felt pressure to make decisions regarding surgery without feeling that they sufficient information. Though understanding how children experience SBCs and how parents experience the treatment course of their child with SBC, we can shared decision-making as a potential way to reduce parents' anxiety and limit negative experience in children.

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.