Follow-up after local therapy for bone sarcoma in children: Optimizing care and evaluating outcomes

This thesis describes the development and evaluation of a multidisciplinary follow-up clinic for patients who underwent local treatment for pediatric bone sarcoma, while also providing a comprehensive overview of outcomes in this patient population. Multidisciplinary follow-up care appeared to be both feasible and valuable for these patients. By integrating expertise from multiple key disciplines, outcomes could be assessed more comprehensively and care could be better tailored to individual needs.

We discuss that it matters what is measured and how it is measured. The choice of measurement instruments determines which aspects of functioning and quality of life become visible and which may remain undetected. Therefore, careful selection of measurement instruments is essential, taking into account the research question, psychometric properties, clinical feasibility, and patient burden.

This thesis confirms that patients with bone sarcoma undergo intensive treatment that can have a lasting impact on daily life. Adverse events and physical limitations are shown to be common, and average quality of life is lower than that of the general population. At the same time, there are indications of resilience. Many patients remain physically active, develop ways of coping with pain and physical limitations, and report satisfaction with their daily lives within the possibilities available to them.

The type of surgery does not seem to determine patients’ perceived abilities or satisfaction with daily life. Factors such as fatigue, perceived physical limitations, and potentially non-medical factors may be more important. These findings highlight the importance of care that addresses not only medical outcomes, but also individual preferences, coping strategies, and the management of expectations.

The multidisciplinary approach and the comprehensive assessment of patient-reported and clinical outcomes provide a strong foundation for further improving follow-up care for patients after local treatment for pediatric bone sarcoma. Additionally, the findings of this thesis support healthcare professionals in shared decision-making with newly diagnosed patients regarding local treatment options, by providing a better understanding of potential long-term consequences and realistic expectations.

Beyond improving care for this specific patient population, this multidisciplinary and structured approach to follow-up care may also serve as a model for other groups of patients living with lasting consequences of complex oncological treatments.