Psychosocial well-being of long-term survivors of pediatric head-neck rhabdomyosarcoma

Bas Vaarwerk, Reineke A Schoot, Heleen Maurice-Stam, Olga Slater, Benjamin Hartley, Peerooz Saeed, Eva Gajdosova, Michiel W van den Brekel, Alfons J M Balm, Marinka L F Hol, Stefanie van Jaarsveld, Leontien C M Kremer, Cecile M Ronckers, Henry C Mandeville, Bradley R Pieters, Mark N Gaze, Raquel Davila Fajardo, Simon D Strackee, David Dunaway, Ludi E SmeeleJulia C Chisholm, Huib N Caron, Martha A Grootenhuis, Johannes H M Merks

Research output: Contribution to journalArticlepeer-review


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.

Original languageEnglish
Pages (from-to)e27498
JournalPediatric blood & cancer
Issue number2
Publication statusPublished - Oct 2018


  • Adolescent
  • Cancer Survivors/psychology
  • Child
  • Cross-Sectional Studies
  • Female
  • Head and Neck Neoplasms/psychology
  • Humans
  • Male
  • Quality of Life
  • Rhabdomyosarcoma/psychology
  • Surveys and Questionnaires


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