TY - JOUR
T1 - A multidisciplinary approach to assessing the impact of local therapy in pediatric bone sarcoma patients and survivors
T2 - a cross-sectional study of adverse events and health-related quality of life
AU - Tigelaar, Leonie G
AU - Haveman, Lianne M
AU - Bekkering, Willem P
AU - Van Tinteren, Harm
AU - Maurice-Stam, Heleen
AU - Van der Hoek, Hinke
AU - Grootenhuis, Martha A
AU - Beek, Laura R
AU - Rohrich, Christel D
AU - Oude Lansink, Irene L B
AU - Van Noesel, Max M
AU - Kollen, Wouter J W
AU - Kremer, Leontien C M
AU - Solkema, Willemijn Plieger-van
AU - Van der Heijden, Lizz
AU - Bramer, Jos A M
AU - Van de Sande, Michiel A J
AU - Schreuder, Hendrik W B
AU - Merks, Johannes H M
N1 - Publisher Copyright:
© 2025 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license. http://creativecommons.org/licenses/by-nc-nd/4.0/
PY - 2025/12
Y1 - 2025/12
N2 - 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.
AB - 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.
U2 - 10.1016/j.eclinm.2025.103622
DO - 10.1016/j.eclinm.2025.103622
M3 - Article
C2 - 41278240
SN - 2589-5370
VL - 90
JO - EClinicalMedicine
JF - EClinicalMedicine
M1 - 103622
ER -