Department of Orthopedic Surgery and Sports Medicine, Amsterdam Movement Sciences, Amsterdam University Medical Centers, Amsterdam, the Netherlands.
Princess Maxima Centre for Paediatric Oncology, Utrecht, The Netherlands.
J Orthop Surg Res. 2024 Nov 2;19(1):714. doi: 10.1186/s13018-024-05192-y.
Children and young adults needing surgery for a primary malignant bone tumour around the knee face a difficult, life-changing decision. A previous study showed that this population wants to be involved more in the decision-making process and that more involvement leads to less decisional stress and regret. Therefore, a well-designed and standardized decision-making process based on the principles of shared decision-making needs to be designed, implemented, and evaluated.
We developed a shared decision-making (SDM) model for this patient population, including an online decision aid (DA). This model has been implemented in the standard care of patients with a primary malignant bone tumour around the knee. Following implementation, we will analyse its effect on the decision-making process and the impact on patient experiences using questionnaires and interviews. Moreover, potential areas for improvement will be identified.
Given the importance of involving patients and parents in surgical decision-making, particularly in life-changing surgery such as malignant bone tumour surgery, and given the lack of SDM models applicable for this purpose, we want to share our model with the international community, including our study protocol for evaluating and optimising the model. This study will generate valuable knowledge to facilitate the optimisation of current patient care for local treatment. The sharing of our implementation and study protocol can serve as an example for other centres interested in implementing SDM methods in an era characterized by more empowered patients and parents who desire autonomy and reliable and realistic information.
儿童和青少年因膝关节周围的原发性骨恶性肿瘤需要接受手术，他们面临着艰难的、改变生活的决策。先前的研究表明，这一人群希望更多地参与决策过程，更多的参与会导致更少的决策压力和遗憾。因此，需要设计、实施和评估一个基于共享决策原则的精心设计和标准化的决策过程。
我们为这一患者群体开发了一个共享决策（SDM）模型，包括一个在线决策辅助（DA）。该模型已在膝关节周围原发性恶性骨肿瘤患者的标准护理中实施。实施后，我们将使用问卷调查和访谈分析其对决策过程的影响以及对患者体验的影响。此外，还将确定潜在的改进领域。
鉴于让患者和家长参与手术决策的重要性，特别是在像恶性骨肿瘤手术这样改变生活的手术中，并且鉴于缺乏适用于此目的的 SDM 模型，我们希望与国际社会分享我们的模型，包括我们评估和优化模型的研究方案。这项研究将产生有价值的知识，以促进当地治疗中对当前患者护理的优化。我们实施和研究方案的分享可以为其他有兴趣在以渴望自主和可靠、现实信息为特征的患者和家长更具授权的时代实施 SDM 方法的中心提供范例。
