The support and information needs of adolescents and young adults with cancer when active treatment ends

Sarah Lea, Ana Martins, Lorna A. Fern, Matthew Bassett, Maria Cable, Gary Doig, Sue Morgan, Louise Soanes, Michael Whelan, Rachel M. Taylor

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Abstract

Background: The end of active treatment is a period of high stress for young people with cancer, but limited literature exists about their information and support needs during this phase. This study aimed to understand the needs of young people with cancer, how these needs are currently being met, and how best to provide information and support at the end of active treatment.
Methods: This was a multi-stage, mixed methods study exploring the end of treatment experience from the perspectives of young people, and the healthcare professionals caring for them. Semi-structured interviews were undertaken with healthcare professionals, which informed a survey administered nationally. Subsequently, semi-structured interviews were conducted with young people. These combined results informed a co-design workshop to develop recommendations.
Results: Telephone interviews were conducted with 12 healthcare professionals and 49 completed the online survey. A total of 11 young people aged 19–26 years (female = 8; 73%) were interviewed. The stakeholder workshop was attended by both healthcare professionals (n = 8) and young people (n = 3). At the end of treatment young people experience numerous ongoing physical issues including pain, fatigue and insomnia; in addition to a range of psychosocial and emotional issues including anxiety, fear of recurrence and isolation. The top three priorities for end of treatment care were: earlier provision and preparation around on-going impact of cancer and cancer treatment; standardised and continued follow-up of young people’s emotional well-being; and development of more information and resources specific to young people.
Conclusion
The access and availability of appropriate information and sources of support at the end of treatment is variable and inequitable. Young people’s needs would be more effectively met by timely, structured and accessible information, and support provision at the end of treatment to both prepare and enable adaptation across their transition to living with and beyond cancer. This will require both organisational and practical adjustments in care delivery, in addition to a renewed and updated understanding of what the ‘end of treatment’ transition process means.
Original languageEnglish
Article number697
Number of pages13
JournalBMC Cancer
Volume20
Issue number1
DOIs
Publication statusPublished - 28 Jul 2020

Bibliographical note

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Keywords

  • YOUNG adults
  • INFORMATION needs
  • MEDICAL personnel
  • TEENAGERS
  • TELEPHONE interviewing
  • CANCER patients
  • PSYCHO-oncology
  • Adolescents
  • Cancer
  • Early survivorship
  • End of treatment
  • Healthcare transition
  • Teenagers
  • Young adults
  • Young people

ASJC Scopus subject areas

  • Genetics
  • Oncology
  • Cancer Research

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