Body image of patients in follow-up for pediatric bone sarcoma: implications of tumor location and local therapy

Hinke van der Hoek; Leonie G Tigelaar; Heleen Maurice-Stam; Laura R Beek; Jennifer van Dijk; Marjolein E M Langemeijer; Relinde W Slooff-Lentink; Alied M van der Aa-van Delden; W Peter Bekkering; Irene L B Oude Lansink; Christel D Rohrich; Jos A M Bramer; Michiel A J van de Sande; H W Bart Schreuder; Lianne M Haveman; Johannes H M Merks; Martha A Grootenhuis

doi:10.1007/s11764-025-01847-9

Body image of patients in follow-up for pediatric bone sarcoma: implications of tumor location and local therapy

J Cancer Surviv. 2025 Jun 18. doi: 10.1007/s11764-025-01847-9. Online ahead of print.

Authors

Hinke van der Hoek^#¹, Leonie G Tigelaar^#¹, Heleen Maurice-Stam¹, Laura R Beek¹, Jennifer van Dijk¹, Marjolein E M Langemeijer¹, Relinde W Slooff-Lentink¹, Alied M van der Aa-van Delden¹, W Peter Bekkering¹, Irene L B Oude Lansink^{1

2}, Christel D Rohrich^{1

2}, Jos A M Bramer^{1

3}, Michiel A J van de Sande^{1

4}, H W Bart Schreuder^{1

5}, Lianne M Haveman¹, Johannes H M Merks^{1

6}, Martha A Grootenhuis⁷

Affiliations

¹ Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands.
² University Medical Center Utrecht, Wilhelmina Children's Hospital, Utrecht, the Netherlands.
³ Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands.
⁴ Leiden University Medical Center, Leiden, the Netherlands.
⁵ Nijmegen Medical Center, Radboud University, Nijmegen, the Netherlands.
⁶ Division of Imaging and Oncology, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands.
⁷ Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands. m.a.grootenhuis-2@prinsesmaximacentrum.nl.

^# Contributed equally.

PMID: 40531387
DOI: 10.1007/s11764-025-01847-9

Abstract

Purpose: Bone sarcomas often arise during adolescence, a crucial period for psychosocial development. Treatment requires local therapy, which frequently involves body-altering surgery. Therefore, we aim to evaluate this population's body image and perceived physical appearance, and explore its relationship with tumor location, surgery type for tumors around the knee, and psychological difficulties.

Methods: Patients treated for pediatric bone sarcoma in the lower extremity, pelvis, or upper extremity and ≥ 2 years post-diagnosis completed the Perceived Physical Appearance Scale of the PedsQL Cancer Module (PedsQL-CM-PPA; 0 = worse,100 = good), Body Image Scale (BIS; 0 = good, 30 = worse, cut-off ≥ 10), and Emotion Thermometers (ET). The relationship with tumor location and surgery type for tumors around the knee was assessed by linear regression analyses controlled for age, sex, and time since local therapy. Pearson correlations evaluated associations with psychological difficulties (ET).

Results: Patients (n = 132, 47% female) were on average 20.5 years old and 7.8 years after local therapy. Mean PedsQL-CM-PPA score was 72.0 (SD = 23.0), with amputation patients scoring higher (81.8; p = 0.02), while rotationplasty patients (70.8) and those after limb-sparing surgery (65.9) scored similarly. Mean BIS score was 8.4 (SD = 6.8), with 37% scoring ≥ 10. BIS scores did not differ between groups. PedsQL-CM-PPA and BIS scores significantly correlated with psychosocial difficulties.

Conclusion: Body image, perceived physical appearance, and their relationship with psychological difficulties should be carefully addressed in counseling during shared decision-making for local therapy options and follow-up care. Since these outcomes are influenced by more than just medical factors, patient preferences and personal factors should be central to these discussions.

Implications for cancer survivors: Body image concerns and perceived physical appearance may persist long after treatment and are not solely related to surgery type. Addressing these issues in follow-up care is essential to support survivors' long-term well-being.

Keywords: Body image; Cancer survivorship; Mental health; Oncology; Pediatric bone sarcoma; Perceived physical appearance; Psychosocial outcomes; Quality of life research.