Vaarwerk, Bas;
Schoot, Reineke A;
Maurice-Stam, Heleen;
Slater, Olga;
Hartley, Benjamin;
Saeed, Peerooz;
Gajdosova, Eva;
... Merks, Johannes HM; + view all
(2019)
Psychosocial well-being of long-term survivors of pediatric head-neck rhabdomyosarcoma.
Pediatric Blood & Cancer
, 66
(2)
, Article e27498. 10.1002/pbc.27498.
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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.
| Type: | Article |
|---|---|
| Title: | Psychosocial well-being of long-term survivors of pediatric head-neck rhabdomyosarcoma |
| Location: | United States |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1002/pbc.27498 |
| Publisher version: | https://doi.org/10.1002/pbc.27498 |
| Language: | English |
| Additional information: | © 2018 The Authors. Pediatric Blood & Cancer Published by Wiley Periodicals, Inc. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes. |
| Keywords: | Science & Technology, Life Sciences & Biomedicine, Oncology, Hematology, Pediatrics, brachytherapy, Head and neck, pediatric oncology, psychosocial well-being, quality of life, radiotherapy, rhabdomyosarcoma, QUALITY-OF-LIFE, CHILDHOOD-CANCER SURVIVORS, LOCAL TREATMENT, CHILDREN, ADOLESCENTS, RADIOTHERAPY, SARCOMAS, OUTCOMES, TUMORS |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Cancer Institute UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Cancer Institute > Research Department of Oncology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Developmental Biology and Cancer Dept |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10182910 |
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