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.

Aims

High-quality clinical research in children’s orthopaedic surgery has lagged behind other surgical subspecialties. This study used a consensus-based approach to identify research priorities for clinical trials in children’s orthopaedics.

Purpose: Surgery for degenerative lumbar spinal conditions offers tremendous benefit for patients with moderate/severe symptoms failing non-operative treatment. There is little appreciation among referring family physicians (FPs) on factors that identify the ideal surgical candidate. Differences in preferences between patients and physicians leads to wide variation in referrals and impedes the shared decision-making process. Our purpose was to identify the dominant clinical factors influencing patient, FP, and surgeon preferences for lumbar spinal surgery.

Method: We used conjoint analysis, a rigorous method for eliciting preferences, in a mailed survey to all orthopaedic and neurosurgeons, a random sample of FPs, and patients in Ontario to determine the importance that respondents place on decisions for lumbar spinal surgery. We identified six clinical factors (walking tolerance, duration of pain, pain severity, neurological symptoms, typical onset, and dominant location of pain) and presented 16 hypothetical vignettes to participants who rated, on a six-point-scale, their preference for surgery. Data were analyzed using random-effects ordered probit regression models and relative importance of each clinical factor was reported.

Results: We obtained responses from 131 surgeons, 202 FPs, and 164 patients. We demonstrated that despite wide variations in overall responses, all six clinical factors were highly associated with surgical preference (p< 0.01). Surgeons placed the highest importance on the location of pain (34%), followed by pain severity (19%) and walking tolerance (19%). FPs considered neurological symptoms (23%), walking tolerance (20%), pain severity (20%), and typical onset (16%) to all be of similar importance. Pain severity (29%), walking tolerance (29%), and duration of pain (28%) were the most important factors for patients in deciding for surgery. Orthopaedic (over neurosurgical) specialty was statistically associated with a lower preference for surgery (p< 0.047). Older patient age (p< 0.03) and previous surgical consultation (p< 0.03) were both associated with a greater patient preference for considering surgery.

Conclusion: Different preferences for surgery exist between surgeons, FPs and patients. FPs may reduce over- and under-referrals by appreciating surgeons’ importance on location of pain (leg versus back). Surgeons and FPs may improve the shared decision making process by understanding that patients place high importance on duration, severity, and walking tolerance.