Issues experienced and support provided to adolescents and young adults at the end of active treatment for cancer: A rapid review of the literature

Lea, Sarah; Martins, Ana; Bassett, Matt; Cable, Maria; Doig, Gary; Fern, Lorna A; Morgan, Sue; Soanes, Louise; Smith, Sam; Whelan, Michael; Taylor, Rachel

doi:10.1111/ecc.12972

Cited by 17 publications

(35 citation statements)

References 35 publications

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“…Healthcare professionals were invited to participate in a telephone interview, which explored how they were currently supporting young people at the end of treatment and what additional information and support they thought young people needed. A semi-structure interview schedule guided the telephone interviews, which was developed from the literature review [ 13 ] and the patient and public involvement activities described above. This was not prescriptive and was purposefully flexible to enable the researcher to explore models of end of treatment care in different settings, and to allow the views of the healthcare professionals who took part to also shape the direction of the discussion.…”

Section: Methodsmentioning

confidence: 99%

“…Young people had the option to participate in a telephone or face-to-face interview. The telephone and face-to-face interviews followed a semi-structured schedule developed through the review of the literature [ 13 ] and YAP workshop. This was not prescriptive and was flexible to enable the researcher to explore new and emerging experiences.…”

Section: Methodsmentioning

confidence: 99%

“…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].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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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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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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“…This has indeed required detailed characterisation of the specific similarities and differences between AYA and older/younger patients, over and above merely highlighting them, but much of that is now in place. For example Specific barriers to AYA entering clinical trials are now characterised (Fern, Lewandowski, Coxon, & Whelan, ) Patient and health service organisational factors that underpin advanced disease at AYA cancer presentation are increasingly understood (Herbert et al, ) Biological differences between apparently similar cancers in AYA and other age groups are described in some areas (Tricoli et al, ) The specific healthcare professional competencies required for working with AYA are characterised (Taylor et al, ) The social difficulties of AYA with cancer are specifically and systematically described (Warner et al, ). The unmet needs of AYA have been frequently described and differ relatively little during the cancer trajectory (Lea et al, ). In this edition, Darlington et al comprehensively describe how specific AYA needs can influence the quality of life (Sodergren et al, ). …”

Section: We Should Design and Implement Intervention Studies In Our Pmentioning

confidence: 99%

“…6. The unmet needs of AYA have been frequently described and differ relatively little during the cancer trajectory (Lea et al, 2018).…”

Section: We S Hould De S I G N and Implement Interventi On S Tud Iementioning

confidence: 99%

Transitioning adolescent and young adult cancer care research out of its adolescence

et al. 2018

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Changes and predictors of social support in adolescent and young adult cancer survivors—Results of a 7‐year longitudinal study

Merz,

Friedrich,

Brock

et al. 2024

Psycho-Oncology

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ObjectiveAs social support has been shown to have beneficial effects on coping with cancer, our study aims to close the research gap on perceived social support in adolescent and young adult (AYA) cancer survivors.MethodsAYAs evaluated their perceived positive social support (PS) and detrimental interactions (DI) by completing the Illness‐Specific Social Support Scale (ISSS‐8) upon completion of acute treatment (t1) as well as 1 year (t2) and 7 years (t6) later. Temporal changes of social support were examined. Sociodemographic, psychological and medical factors were investigated as predictors for PS and DI by using mixed effects models.ResultsWe analyzed data from 319 cancer survivors (74.9% women). At baseline, survivors reported an average score of 13.73 (SD = 2.52) for PS and 3.92 (SD = 2.85) for DI. Average perceived PS changed over time, while DI remained stable. Males, AYAs without a partner and AYAs with clinically meaningful anxiety or depression levels reported fewer PS. Higher effort to cope with the disease and clinically significant anxiety and depression levels were associated with more perceived DI.ConclusionsExisting social networks and perceived social support should be evaluated regularly in AYA‐cancer survivorship. The identification and discussion of mental health of AYAs should also be a standard component in survivor consultations both during treatment and follow‐up care, as elevated depression and anxiety levels were associated with fewer PS and more perceived DI.

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Issues experienced and support provided to adolescents and young adults at the end of active treatment for cancer: A rapid review of the literature

Cited by 17 publications

References 35 publications

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

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

Transitioning adolescent and young adult cancer care research out of its adolescence

Changes and predictors of social support in adolescent and young adult cancer survivors—Results of a 7‐year longitudinal study

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