Shared decision making in primary malignant bone tumour surgery in children and young adults

Background: Children and young adults needing surgery for a primary malignant bone tumour around the knee face a difficult, life changing decision. This study describes the level of shared decision making (SDM) experienced and preferred by these patients, parents and physicians in surgical consultations, and its relation to experienced decisional conflict and decisional regret. 

Methods: Multicentre, cross-sectional cohort study. All patients who underwent surgery for a primary bone tumour around the knee in the Dutch designated orthopaedic oncological centres between 2012 and 2015, and their parents, were invited to complete the SDM-patient-Questionnaire (SDM-Q-9), Decisional Conflict Scale (DCS), Decisional Regret Scale (DRS) and Control Preferences Scale (CPS). Physicians completed the SDM- physician-Questionnaire (SDM-Q-Doc) and CPS. 

Results: Twenty-four patients >16 years with twenty-two parents, and ten parents of patients between 5 and 16 years old, completed the questionnaires. Patients’ median SDM-Q-9 score was 60 (8.9–97.8), parents’ 77.8 (8.9–100) and physicians’ 82.2 (66.7–97.8). The SDM-Q-9 scores of patients (rs=−0.753, p < 0.01) and parents (rs=−0.850, p < 0.01) correlated with their DCS scores. DCS scores were correlated with decisional regret in patients (rs=0.701 p < 0.01) and parents (rs=0.405, p < 0.05). Fourteen patients (78%), twenty-eight parents (96%) and twenty-three physicians (92%) preferred a shared relationship in decision making on type of surgery. 

Conclusions: Patients, parents and physicians agree on sharing responsibility choosing a surgical option. Patients and parents who reported more involvement in the decision-making process experienced less decisional conflict; less decisional conflict was associated with less decisional regret. These findings show the importance of SDM in these life changing surgeries.