A multidisciplinary and structured approach for comprehensive evaluation of functional outcomes, adverse events, psychosocial outcomes and health-related quality of life after local therapy for bone sarcoma in children: protocol for a cross-sectional
This study will generate valuable knowledge on the functional outcomes, adverse events, psychosocial outcomes and quality of life of a national cohort of pediatric bone sarcoma patients in follow-up care. By aligning additional research assessments with standardized patient care, a comprehensive range of outcomes will be obtained while minimizing the patient's burden. Moreover, this protocol may serve as a template for clinics and research internationally, allowing for the merging of standardized outcome data in such rare disease. This will facilitate the optimization of current patient care and inform the important shared decision-making process for local treatment in future patients.
Authors
- Lianne Haveman (ORCID: https://orcid.org/0000-0001-8519-8906)
- Johannes H. M. Merks (ORCID: https://orcid.org/0000-0001-7659-1028)
- Helena J. H. van der Pal (ORCID: https://orcid.org/0000-0003-2253-2115)
- Heleen Maurice‐Stam (ORCID: https://orcid.org/0000-0002-2055-3230)
- Stijn Joël Westerbos
- Michiel A. J. van de Sande (ORCID: https://orcid.org/0000-0002-9156-7656)
- Harm van Tinteren (ORCID: https://orcid.org/0000-0002-4626-8702)
- Hinke van der Hoek (ORCID: https://orcid.org/0000-0002-0020-5036)
- Annemarie M.L. Peek
- Martha A. Grootenhuis (ORCID: https://orcid.org/0000-0002-9632-248X)
- Christel D Rohrich
- Jos A. M. Bramer (ORCID: https://orcid.org/0000-0003-4342-5933)
- W. Peter Bekkering (ORCID: https://orcid.org/0000-0001-5584-2713)
- Irene L B Oude Lansink (ORCID: https://orcid.org/0000-0003-4381-6176)
- Alied M. van der Aa‐van Delden
- Leonie G Tigelaar (ORCID: https://orcid.org/0009-0002-1276-7009)
- Maria M.W. Koopman
- Leontien C. M. Kremer (ORCID: https://orcid.org/0000-0002-7619-7845)
- Laura Beek
- H.W.B. Schreuder
- Jennifer van Dijk
- Relinde W Slooff-Lentink
- Marjolein E M Langemeijer
Institutions
- Radboud University Nijmegen (NL)
- Utrecht University (NL)
- Leiden University Medical Center (NL)
- Radboud University Medical Center (NL)
- University Medical Center Utrecht (NL)
- Princess Máxima Center (NL)
- Amsterdam University Medical Centers (NL)
Publication Details
- Journal
- Frontiers in Pediatrics
- Published
- 2025-04-15
- DOI
- https://doi.org/10.3389/fped.2025.1534153
- Citations
- 3
- Primary Topic
- Childhood Cancer Survivors' Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 10.48