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Abstract

[Indexed for MEDLINE] 18. J Orthop Surg Res. 2024 Nov 2;19(1):714. doi: 10.1186/s13018-024-05192-y. Shared decision making in primary malignant bone tumour surgery around the knee in children and young adults: protocol for a prospective study. Blom KJ(1)(2), Bekkering WP(2), Fiocco M(2)(3)(4), van de Sande MA(2)(5), Schreuder HW(2)(6), van der Heijden L(2), Jutte PC(7), Haveman LM(2), Merks JH(2)(8), Bramer JA(9)(10)(11). Author information: (1)Department of Orthopedic Surgery and Sports Medicine, Amsterdam Movement Sciences, Amsterdam University Medical Centers, Amsterdam, the Netherlands. (2)Princess Maxima Centre for Paediatric Oncology, Utrecht, The Netherlands. (3)Mathematical Institute, Leiden University, Leiden, the Netherlands. (4)Department of Biomedical Data Sciences, Medical Statistics Section, Leiden University Medical Center, Leiden, the Netherlands. (5)Department of Orthopaedic Surgery, Leiden University Medical Centre, Leiden, the Netherlands. (6)Department of Orthopaedic Surgery, Radboud University Medical Centre Nijmegen, Nijmegen, the Netherlands. (7)Department of Orthopaedic Surgery, University Medical Centre Groningen, Groningen, the Netherlands. (8)Division of Imaging and Oncology, University Medical Centre Utrecht, Utrecht University, Utrecht, the Netherlands. (9)Department of Orthopedic Surgery and Sports Medicine, Amsterdam Movement Sciences, Amsterdam University Medical Centers, Amsterdam, the Netherlands. j.a.bramer@amsterdamumc.nl. (10)Princess Maxima Centre for Paediatric Oncology, Utrecht, The Netherlands. j.a.bramer@amsterdamumc.nl. (11)Cancer Center Amsterdam, Amsterdam University Medical Centers, Amsterdam, the Netherlands. j.a.bramer@amsterdamumc.nl. BACKGROUND: 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. METHODS: 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. DISCUSSION: 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. © 2024. The Author(s). DOI: 10.1186/s13018-024-05192-y PMCID: PMC11531153