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Psychosocial well‐being of long‐term survivors of pediatric head–neck rhabdomyosarcoma
Author(s) -
Vaarwerk Bas,
Schoot Reineke A.,
MauriceStam Heleen,
Slater Olga,
Hartley Benjamin,
Saeed Peerooz,
Gajdosova Eva,
den Brekel Michiel W.,
Balm Alfons J.M.,
Hol Marinka L.F.,
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.
Publication year - 2019
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.27498
Subject(s) - medicine , psychosocial , rhabdomyosarcoma , head and neck , pediatrics , sarcoma , surgery , psychiatry , pathology
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.