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Getting control during follow-up visits: the views and experiences of parents on tumor surveillance after their children have completed therapy for rhabdomyosarcoma or Ewing sarcoma

PURPOSE: Patients treated for rhabdomyosarcoma (RMS) or Ewing sarcoma (ES) are subject to extensive follow-up after completion of therapy. The aim of this follow-up is to monitor treatment side effects and to detect relapse in an early phase to improve prognosis after relapse. Little is known about...

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Autores principales: Vaarwerk, B., Limperg, P. F., Naafs-Wilstra, M. C., Merks, J. H. M., Grootenhuis, M. A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6726689/
https://www.ncbi.nlm.nih.gov/pubmed/30747278
http://dx.doi.org/10.1007/s00520-019-04678-4
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author Vaarwerk, B.
Limperg, P. F.
Naafs-Wilstra, M. C.
Merks, J. H. M.
Grootenhuis, M. A.
author_facet Vaarwerk, B.
Limperg, P. F.
Naafs-Wilstra, M. C.
Merks, J. H. M.
Grootenhuis, M. A.
author_sort Vaarwerk, B.
collection PubMed
description PURPOSE: Patients treated for rhabdomyosarcoma (RMS) or Ewing sarcoma (ES) are subject to extensive follow-up after completion of therapy. The aim of this follow-up is to monitor treatment side effects and to detect relapse in an early phase to improve prognosis after relapse. Little is known about parental emotional experiences during this period. We assessed the views and experiences of parents of children treated for RMS or ES on the follow-up examinations after completion of therapy. METHODS: We conducted two focus group meetings and four semi-structured telephone interviews with parents of children treated for RMS or ES in Dutch pediatric oncology centers. Parents of children 0–5 years after end-of-therapy were invited via letters (response rate 31%) and via social media channels of “Dutch Childhood Association for Children and Parents” (VOKK). An inductive thematic approach was used to analyze the data. RESULTS: In total, 12 parents (fathers, n = 3; mothers, n = 9) of 12 patients treated for RMS (n = 6) or ES (n = 6) participated. Median age at diagnosis for their children was 7.9 years and median time after end-of-treatment was 37 months. Four major themes were identified: content of follow-up, distress and anxiety, search for reassurance and hope, and interaction with others. Parents of children treated for RMS or ES report experiencing significant distress after completion of treatment. They report that their distress was decreased by adequate communication about content, timing, and reasoning behind follow-up. CONCLUSION: Physicians should pay attention to the needs of individual parents to reduce distress in the period after completion of therapy.
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spelling pubmed-67266892019-09-17 Getting control during follow-up visits: the views and experiences of parents on tumor surveillance after their children have completed therapy for rhabdomyosarcoma or Ewing sarcoma Vaarwerk, B. Limperg, P. F. Naafs-Wilstra, M. C. Merks, J. H. M. Grootenhuis, M. A. Support Care Cancer Original Article PURPOSE: Patients treated for rhabdomyosarcoma (RMS) or Ewing sarcoma (ES) are subject to extensive follow-up after completion of therapy. The aim of this follow-up is to monitor treatment side effects and to detect relapse in an early phase to improve prognosis after relapse. Little is known about parental emotional experiences during this period. We assessed the views and experiences of parents of children treated for RMS or ES on the follow-up examinations after completion of therapy. METHODS: We conducted two focus group meetings and four semi-structured telephone interviews with parents of children treated for RMS or ES in Dutch pediatric oncology centers. Parents of children 0–5 years after end-of-therapy were invited via letters (response rate 31%) and via social media channels of “Dutch Childhood Association for Children and Parents” (VOKK). An inductive thematic approach was used to analyze the data. RESULTS: In total, 12 parents (fathers, n = 3; mothers, n = 9) of 12 patients treated for RMS (n = 6) or ES (n = 6) participated. Median age at diagnosis for their children was 7.9 years and median time after end-of-treatment was 37 months. Four major themes were identified: content of follow-up, distress and anxiety, search for reassurance and hope, and interaction with others. Parents of children treated for RMS or ES report experiencing significant distress after completion of treatment. They report that their distress was decreased by adequate communication about content, timing, and reasoning behind follow-up. CONCLUSION: Physicians should pay attention to the needs of individual parents to reduce distress in the period after completion of therapy. Springer Berlin Heidelberg 2019-02-12 2019 /pmc/articles/PMC6726689/ /pubmed/30747278 http://dx.doi.org/10.1007/s00520-019-04678-4 Text en © The Author(s) 2019 OpenAccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Original Article
Vaarwerk, B.
Limperg, P. F.
Naafs-Wilstra, M. C.
Merks, J. H. M.
Grootenhuis, M. A.
Getting control during follow-up visits: the views and experiences of parents on tumor surveillance after their children have completed therapy for rhabdomyosarcoma or Ewing sarcoma
title Getting control during follow-up visits: the views and experiences of parents on tumor surveillance after their children have completed therapy for rhabdomyosarcoma or Ewing sarcoma
title_full Getting control during follow-up visits: the views and experiences of parents on tumor surveillance after their children have completed therapy for rhabdomyosarcoma or Ewing sarcoma
title_fullStr Getting control during follow-up visits: the views and experiences of parents on tumor surveillance after their children have completed therapy for rhabdomyosarcoma or Ewing sarcoma
title_full_unstemmed Getting control during follow-up visits: the views and experiences of parents on tumor surveillance after their children have completed therapy for rhabdomyosarcoma or Ewing sarcoma
title_short Getting control during follow-up visits: the views and experiences of parents on tumor surveillance after their children have completed therapy for rhabdomyosarcoma or Ewing sarcoma
title_sort getting control during follow-up visits: the views and experiences of parents on tumor surveillance after their children have completed therapy for rhabdomyosarcoma or ewing sarcoma
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6726689/
https://www.ncbi.nlm.nih.gov/pubmed/30747278
http://dx.doi.org/10.1007/s00520-019-04678-4
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