Abstract
BackgroundThe 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.MethodsThis 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.ResultsTelephone 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.ConclusionThe 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.
Highlights
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 paper presents study findings related to the following aims: 1. To identify young people with cancer’s information and support needs when active treatment ends
Healthcare professionals Interviews were conducted with 12 healthcare professionals (nurses n = 8; youth support coordinators (YSC) n = 2; medical doctor n = 1; psychologist n = 1) and 49 healthcare professionals completed the online survey
Summary
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. Guidance in England proposed young people should be reviewed by the multi-disciplinary team (MDT) prior to entering survivorship [12] and should ‘be provided with access to resources and/or referral information that can help them re-integrate back into “normal” society’ [6], p.210. While these recommendations are useful, more specific guidance would provide professionals with a clearer direction of how they can provide support for young people at this point in the cancer timeline. The limited evidence which currently exists suggests young people leave active treatment with little support and experience an unanticipated withdrawal of services [13]
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