Bas Vaarwerk1,2, Reineke A Schoot1, Heleen Maurice-Stam3, Olga Slater4, Benjamin Hartley5, Peerooz Saeed6, Eva Gajdosova7, Michiel W van den Brekel8,9, Alfons J M Balm8,9, Marinka L F Hol8, Stefanie van Jaarsveld1, Leontien C M Kremer1,2, Cecile M Ronckers1,2, Henry C Mandeville10, Bradley R Pieters11, Mark N Gaze12, Raquel Davila Fajardo13, Simon D Strackee14, David Dunaway15, Ludi E Smeele8,9, Julia C Chisholm16, Huib N Caron1, Martha A Grootenhuis2,3, Johannes H M Merks1,2. 1. Department of Paediatric Oncology, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands. 2. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands. 3. Paediatric Psychosocial Department, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands. 4. Department of Paediatric Oncology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom. 5. Department of Otorhinolaryngology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom. 6. Orbital Centre, Department of Ophthalmology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands. 7. Department of Ophthalmology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom. 8. Department of Oral and Maxillofacial surgery, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands. 9. Department of Head and Neck Oncology and Surgery, The Netherlands Cancer Institute, Amsterdam, The Netherlands. 10. Department of Radiotherapy, The Royal Marsden NHS Foundation Trust, Sutton, United Kingdom. 11. Department of Radiation Oncology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands. 12. Department of Oncology, University College London Hospitals NHS Foundation Trust, London, United Kingdom. 13. Department of Radiation Oncology, UMC Utrecht Cancer Center, Utrecht, The Netherlands. 14. Department of Plastic, Reconstructive and Hand Surgery, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands. 15. Craniofacial Unit, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom. 16. Children and Young People's Department, The Royal Marsden NHS Foundation Trust, Sutton, United Kingdom.
Abstract
BACKGROUND: Head and neck rhabdomyosarcoma (HNRMS) survivors are at risk to develop adverse events (AEs). The impact of these AEs on psychosocial well-being is unclear. We aimed to assess psychosocial well-being of HNRMS survivors and examine whether psychosocial outcomes were associated with burden of therapy. PROCEDURE: Sixty-five HNRMS survivors (median follow-up: 11.5 years), treated in the Netherlands and the United Kingdom between 1990 and 2010 and alive ≥2 years after treatment visited the outpatient multidisciplinary follow-up clinic once, in which AEs were scored based on a predefined list according to the Common Terminology Criteria for Adverse Events. Survivors were asked to complete questionnaires on health-related quality of life (HRQoL; PedsQL and YQOL-FD), self-perception (KIDSCREEN), and satisfaction with appearances (SWA). HRQoL and self-perception scores were compared with reference values, and the correlation between physician-assessed AEs and psychosocial well-being was assessed. RESULTS: HNRMS survivors showed significantly lower scores on PedsQL school/work domain (P ≤ 0.01, P = 0.02, respectively), YQOL-FD domains negative self-image and positive consequences (P ≤ 0.01, P = 0.04, respectively) compared with norm data; scores on negative consequences domain were significantly higher (P = 0.03). Over 50% of survivors negatively rated their appearances on three or more items. Burden of AEs was not associated with generic HRQoL and self-perception scores, but was associated with disease-specific QoL (YQOL-FD). CONCLUSION: In general, HRQoL in HNRMS survivors was comparable to reference groups; however, survivors did report disease-specific consequences. We therefore recommend including specific questionnaires related to difficulties with facial appearance in a systematic monitoring program to determine the necessity for tailored care.
BACKGROUND: Head and neck rhabdomyosarcoma (HNRMS) survivors are at risk to develop adverse events (AEs). The impact of these AEs on psychosocial well-being is unclear. We aimed to assess psychosocial well-being of HNRMS survivors and examine whether psychosocial outcomes were associated with burden of therapy. PROCEDURE: Sixty-five HNRMS survivors (median follow-up: 11.5 years), treated in the Netherlands and the United Kingdom between 1990 and 2010 and alive ≥2 years after treatment visited the outpatient multidisciplinary follow-up clinic once, in which AEs were scored based on a predefined list according to the Common Terminology Criteria for Adverse Events. Survivors were asked to complete questionnaires on health-related quality of life (HRQoL; PedsQL and YQOL-FD), self-perception (KIDSCREEN), and satisfaction with appearances (SWA). HRQoL and self-perception scores were compared with reference values, and the correlation between physician-assessed AEs and psychosocial well-being was assessed. RESULTS: HNRMS survivors showed significantly lower scores on PedsQL school/work domain (P ≤ 0.01, P = 0.02, respectively), YQOL-FD domains negative self-image and positive consequences (P ≤ 0.01, P = 0.04, respectively) compared with norm data; scores on negative consequences domain were significantly higher (P = 0.03). Over 50% of survivors negatively rated their appearances on three or more items. Burden of AEs was not associated with generic HRQoL and self-perception scores, but was associated with disease-specific QoL (YQOL-FD). CONCLUSION: In general, HRQoL in HNRMS survivors was comparable to reference groups; however, survivors did report disease-specific consequences. We therefore recommend including specific questionnaires related to difficulties with facial appearance in a systematic monitoring program to determine the necessity for tailored care.
Authors: S Gallego; D Bernabeu; M Garrido-Pontnou; G Guillen; N Hindi; A Juan-Ribelles; C Márquez; C Mata; J Orcajo; G Ramírez; M Ramos; C Romagosa; D Ruano; P Rubio; R Vergés; C Valverde Journal: Clin Transl Oncol Date: 2021-07-01 Impact factor: 3.405