Psychosocial well-being of long-term survivors of pediatric head-neck rhabdomyosarcoma
Vaarwerk, Bas; Schoot, Reineke A; Maurice-Stam, Heleen; Slater, Olga; Hartley, Benjamin; Saeed, Peerooz; Gajdosova, Eva; van den Brekel, Michiel W; Balm, Alfons J M; Hol, Marinka L F; van Jaarsveld, Stefanie; Kremer, Leontien C M; Ronckers, Cecile M; Mandeville, Henry C; Pieters, Bradley R; Gaze, Mark N; Davila Fajardo, Raquel; Strackee, Simon D; Dunaway, David; Smeele, Ludi E; Chisholm, Julia C; Caron, Huib N; Grootenhuis, Martha A; Merks, Johannes H M
(2019) Pediatric Blood & Cancer, volume 66, issue 2, pp. e27498
(Article)
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
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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.
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Keywords: Adolescent, Cancer Survivors/psychology, Child, Cross-Sectional Studies, Female, Head and Neck Neoplasms/psychology, Humans, Male, Quality of Life, Rhabdomyosarcoma/psychology, Surveys and Questionnaires, pediatric oncology, psychosocial well-being, Head and neck, radiotherapy, brachytherapy, quality of life, rhabdomyosarcoma, Hematology, Oncology, Pediatrics, Perinatology, and Child Health, Research Support, Non-U.S. Gov't, Journal Article
ISSN: 1545-5009
Publisher: Wiley-Liss Inc.
Note: © 2018 The Authors. Pediatric Blood & Cancer Published by Wiley Periodicals, Inc.
(Peer reviewed)