Introduction The end of active treatment is a stressful period for adolescents and young adults (AYA), but little is known about AYA experiences at this time point. The aim was to describe the issues young people experienced and identify interventions to support AYA at the end of treatment. Methods We conducted a rapid review of published primary research to identify what is currently known about AYA experiences of the end of treatment, the issues which arise and existing interventions to support AYA at this time. Results Searches identified 540 papers of which 16 met the inclusion criteria. Five main themes were identified: physical/medical issues; psychological, social and emotional issues; information and support needs; sources of information and support; and difficulties accessing information and support. Within these broader themes, several subthemes were identified and explored further. Conclusion Adolescents and young adults are under prepared for the unpredictable and ongoing nature of the physical, psychological and social issues they face at the end of cancer treatment. Enabling young people's inclusion within their relevant social and educational peer networks should be a priority. Timely, structured and equitable information/support is needed to prepare AYA for treatment ending and subsequent reintegration to “everyday” life.

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, semistructured 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 ongoing 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.

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Background The end of active cancer treatment is described as a stressful period for adolescents and young adults (AYAs). However, research evidence describing the experience of AYAs as they transition from active treatment into follow-up care is scarce. Objective We aimed to understand AYAs’ experiences within the first 12 months of ending active treatment. Methods Data were collected using semistructured interviews, which were digitally recorded and transcribed verbatim. Qualitative analysis of transcripts was used to identify key themes/subthemes. Results Eleven AYAs (8 female participants), diagnosed with cancer aged 17 to 25 years and 19 to 26 years at point of interview, participated. At time of interview, 7 were within 6 months of treatment completion, and in 4 participants, treatment ended 6 to 12 months prior. Three main themes were identified: (1) challenges of social reintegration and self-identity, (2) expectations versus the lived experience of ending treatment, and (3) sudden loss of the safe “bubble” of treatment. Conclusions Adolescents and young adults were underprepared for and challenged by the unexpected emotional and physical consequences of ending active cancer treatment. Implications for Practice Young people require information and support to prepare for ending active treatment and reintegration to everyday life. Preparation for the short- and long-term physical, social, and psychological impact of a cancer diagnosis even when treatment ends will assist young people in managing this transition. Further research is required to develop and test interventions to provide timely, structured, and equitable information and support at the end of treatment to better prepare AYAs for the challenges they may face as treatment ends.