A multidisciplinary approach to assessing the impact of local therapy in pediatric bone sarcoma patients and survivors: a cross-sectional study of adverse events and health-related quality of life

Abstract

BACKGROUND: Pediatric bone sarcoma patients undergo intensive treatment including life-changing local therapy, which results in a high burden of adverse events (AEs) and reduced health-related quality of life (HR-QoL). Given this multidimensional impact, optimal follow-up care requires a multidisciplinary expert team. We setup a multidisciplinary follow-up clinic with carousel consultations-including pediatric oncologists/late effects specialists, orthopedic surgeons, rehabilitation physicians, physical therapists, and psychologists-to screen for local therapy-related issues using standardized measurements. In addition to enhancing care, this clinic enables the study of a nationwide cohort. METHODS: This cross-sectional study included patients diagnosed with pediatric bone sarcoma from 2003 onwards who completed local therapy and subsequent treatment, and attended the multidisciplinary follow-up clinic between 18 November 2021 and 7 March 2024. Patient satisfaction was assessed using a modified satisfaction questionnaire, and care output was documented based on healthcare professionals' actions following the consultations using a predefined action list. AEs and HR-QoL of the patients seen at the multidisciplinary clinic were evaluated using the Common Terminology Criteria for Adverse Events, Henderson classification, and PedsQL™ Generic Core Scales. FINDINGS: Satisfaction with the provided care was reported by 99% (135/136) of patients. Healthcare professionals documented 182 actions, with counseling for identified patient needs being the most frequent. AEs were present in 96% (138/144) of patients, including moderate events in 72% (103/144) and severe events in 41% (59/144). Common AEs included musculoskeletal deformity, muscle weakness, decreased range of motion, gait disturbance, pain, and unequal limb length. HR-QoL scores were lower across all domains compared to the general population, with a high AE burden associated with poorer HR-QoL (B = -8.7, 95% CI -16.8 to -0.7, p = 0.035). INTERPRETATION: The multidisciplinary follow-up care achieved high patient satisfaction and substantial care output, while enabling expert-led, high-quality data collection. The high prevalence of local therapy-related AEs and reduced HR-QoL are important to consider in follow-up and shared decision-making for local therapy in future patients. This multidisciplinary framework is broadly applicable to oncology patients facing treatment-related challenges, with the potential to improve outcomes and advance oncology research and practice. FUNDING: No specific funding was received for this study.