PMID- 30318743
OWN - NLM
STAT- MEDLINE
DCOM- 20191106
LR  - 20191106
IS  - 1545-5017 (Electronic)
IS  - 1545-5009 (Linking)
VI  - 66
IP  - 2
DP  - 2019 Feb
TI  - Psychosocial well-being of long-term survivors of pediatric head-neck 
      rhabdomyosarcoma.
PG  - e27498
LID - 10.1002/pbc.27498 [doi]
AB  - 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.
CI  - (c) 2018 The Authors. Pediatric Blood & Cancer Published by Wiley Periodicals, Inc.
FAU - Vaarwerk, Bas
AU  - Vaarwerk B
AUID- ORCID: 0000-0003-1336-0112
AD  - Department of Paediatric Oncology, Emma Children's Hospital, Amsterdam UMC, 
      University of Amsterdam, Amsterdam, The Netherlands.
AD  - Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands.
FAU - Schoot, Reineke A
AU  - Schoot RA
AUID- ORCID: 0000-0002-8838-981X
AD  - Department of Paediatric Oncology, Emma Children's Hospital, Amsterdam UMC, 
      University of Amsterdam, Amsterdam, The Netherlands.
FAU - Maurice-Stam, Heleen
AU  - Maurice-Stam H
AUID- ORCID: 0000-0002-2055-3230
AD  - Paediatric Psychosocial Department, Emma Children's Hospital, Amsterdam UMC, 
      University of Amsterdam, Amsterdam, The Netherlands.
FAU - Slater, Olga
AU  - Slater O
AD  - Department of Paediatric Oncology, Great Ormond Street Hospital for Children NHS 
      Foundation Trust, London, United Kingdom.
FAU - Hartley, Benjamin
AU  - Hartley B
AD  - Department of Otorhinolaryngology, Great Ormond Street Hospital for Children NHS 
      Foundation Trust, London, United Kingdom.
FAU - Saeed, Peerooz
AU  - Saeed P
AD  - Orbital Centre, Department of Ophthalmology, Amsterdam UMC, University of 
      Amsterdam, Amsterdam, The Netherlands.
FAU - Gajdosova, Eva
AU  - Gajdosova E
AD  - Department of Ophthalmology, Great Ormond Street Hospital for Children NHS 
      Foundation Trust, London, United Kingdom.
FAU - van den Brekel, Michiel W
AU  - van den Brekel MW
AD  - Department of Oral and Maxillofacial surgery, Amsterdam UMC, University of 
      Amsterdam, Amsterdam, The Netherlands.
AD  - Department of Head and Neck Oncology and Surgery, The Netherlands Cancer 
      Institute, Amsterdam, The Netherlands.
FAU - Balm, Alfons J M
AU  - Balm AJM
AD  - Department of Oral and Maxillofacial surgery, Amsterdam UMC, University of 
      Amsterdam, Amsterdam, The Netherlands.
AD  - Department of Head and Neck Oncology and Surgery, The Netherlands Cancer 
      Institute, Amsterdam, The Netherlands.
FAU - Hol, Marinka L F
AU  - Hol MLF
AD  - Department of Oral and Maxillofacial surgery, Amsterdam UMC, University of 
      Amsterdam, Amsterdam, The Netherlands.
FAU - van Jaarsveld, Stefanie
AU  - van Jaarsveld S
AD  - Department of Paediatric Oncology, Emma Children's Hospital, Amsterdam UMC, 
      University of Amsterdam, Amsterdam, The Netherlands.
FAU - Kremer, Leontien C M
AU  - Kremer LCM
AD  - Department of Paediatric Oncology, Emma Children's Hospital, Amsterdam UMC, 
      University of Amsterdam, Amsterdam, The Netherlands.
AD  - Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands.
FAU - Ronckers, Cecile M
AU  - Ronckers CM
AD  - Department of Paediatric Oncology, Emma Children's Hospital, Amsterdam UMC, 
      University of Amsterdam, Amsterdam, The Netherlands.
AD  - Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands.
FAU - Mandeville, Henry C
AU  - Mandeville HC
AD  - Department of Radiotherapy, The Royal Marsden NHS Foundation Trust, Sutton, 
      United Kingdom.
FAU - Pieters, Bradley R
AU  - Pieters BR
AD  - Department of Radiation Oncology, Amsterdam UMC, University of Amsterdam, 
      Amsterdam, The Netherlands.
FAU - Gaze, Mark N
AU  - Gaze MN
AUID- ORCID: 0000-0002-8344-7902
AD  - Department of Oncology, University College London Hospitals NHS Foundation Trust, 
      London, United Kingdom.
FAU - Davila Fajardo, Raquel
AU  - Davila Fajardo R
AUID- ORCID: 0000-0002-4729-825X
AD  - Department of Radiation Oncology, UMC Utrecht Cancer Center, Utrecht, The 
      Netherlands.
FAU - Strackee, Simon D
AU  - Strackee SD
AD  - Department of Plastic, Reconstructive and Hand Surgery, Amsterdam UMC, University 
      of Amsterdam, Amsterdam, The Netherlands.
FAU - Dunaway, David
AU  - Dunaway D
AD  - Craniofacial Unit, Great Ormond Street Hospital for Children NHS Foundation 
      Trust, London, United Kingdom.
FAU - Smeele, Ludi E
AU  - Smeele LE
AD  - Department of Oral and Maxillofacial surgery, Amsterdam UMC, University of 
      Amsterdam, Amsterdam, The Netherlands.
AD  - Department of Head and Neck Oncology and Surgery, The Netherlands Cancer 
      Institute, Amsterdam, The Netherlands.
FAU - Chisholm, Julia C
AU  - Chisholm JC
AUID- ORCID: 0000-0003-3479-7997
AD  - Children and Young People's Department, The Royal Marsden NHS Foundation Trust, 
      Sutton, United Kingdom.
FAU - Caron, Huib N
AU  - Caron HN
AD  - Department of Paediatric Oncology, Emma Children's Hospital, Amsterdam UMC, 
      University of Amsterdam, Amsterdam, The Netherlands.
FAU - Grootenhuis, Martha A
AU  - Grootenhuis MA
AD  - Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands.
AD  - Paediatric Psychosocial Department, Emma Children's Hospital, Amsterdam UMC, 
      University of Amsterdam, Amsterdam, The Netherlands.
FAU - Merks, Johannes H M
AU  - Merks JHM
AD  - Department of Paediatric Oncology, Emma Children's Hospital, Amsterdam UMC, 
      University of Amsterdam, Amsterdam, The Netherlands.
AD  - Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands.
LA  - eng
GR  - Department of Health/United Kingdom
PT  - Journal Article
PT  - Research Support, Non-U.S. Gov't
DEP - 20181014
PL  - United States
TA  - Pediatr Blood Cancer
JT  - Pediatric blood & cancer
JID - 101186624
SB  - IM
MH  - Adolescent
MH  - Cancer Survivors/*psychology
MH  - Child
MH  - Cross-Sectional Studies
MH  - Female
MH  - Head and Neck Neoplasms/*psychology
MH  - Humans
MH  - Male
MH  - Quality of Life
MH  - Rhabdomyosarcoma/*psychology
MH  - Surveys and Questionnaires
OTO - NOTNLM
OT  - Head and neck
OT  - brachytherapy
OT  - pediatric oncology
OT  - psychosocial well-being
OT  - quality of life
OT  - radiotherapy
OT  - rhabdomyosarcoma
EDAT- 2018/10/16 06:00
MHDA- 2019/11/07 06:00
CRDT- 2018/10/16 06:00
PHST- 2018/06/19 00:00 [received]
PHST- 2018/09/17 00:00 [revised]
PHST- 2018/09/18 00:00 [accepted]
PHST- 2018/10/16 06:00 [pubmed]
PHST- 2019/11/07 06:00 [medline]
PHST- 2018/10/16 06:00 [entrez]
AID - 10.1002/pbc.27498 [doi]
PST - ppublish
SO  - Pediatr Blood Cancer. 2019 Feb;66(2):e27498. doi: 10.1002/pbc.27498. Epub 2018 
      Oct 14.