ORIGINAL ARTICLE
Issues experienced and support provided to adolescents and young adults at the end of active treatment for cancer: A rapid review of the literature
Sarah Lea,
Ana Martins,
Matt Bassett, Maria Cable, Gary Doig, Lorna A. Fern,
Sue Morgan, Louise Soanes,
Sam Smith, Michael Whelan, Rachel M. Taylor,
Sarah Lea
University College London Hospitals NHS Foundation Trust, London, UK
Search for more papers by this authorAna Martins
University College London Hospitals NHS Foundation Trust, London, UK
Search for more papers by this authorLorna A. Fern
University College London Hospitals NHS Foundation Trust, London, UK
National Cancer Research Institute, London, UK
Search for more papers by this authorLouise Soanes
University College London Hospitals NHS Foundation Trust, London, UK
Search for more papers by this authorCorresponding Author
Rachel M. Taylor
University College London Hospitals NHS Foundation Trust, London, UK
Correspondence
Rachel M. Taylor, Cancer Division, University College London Hospitals NHS Foundation Trust, London NW1 2PG UK.
Email: [email protected]
Search for more papers by this authorSarah Lea,
Ana Martins,
Matt Bassett, Maria Cable, Gary Doig, Lorna A. Fern,
Sue Morgan, Louise Soanes,
Sam Smith, Michael Whelan, Rachel M. Taylor,
Sarah Lea
University College London Hospitals NHS Foundation Trust, London, UK
Search for more papers by this authorAna Martins
University College London Hospitals NHS Foundation Trust, London, UK
Search for more papers by this authorLorna A. Fern
University College London Hospitals NHS Foundation Trust, London, UK
National Cancer Research Institute, London, UK
Search for more papers by this authorLouise Soanes
University College London Hospitals NHS Foundation Trust, London, UK
Search for more papers by this authorCorresponding Author
Rachel M. Taylor
University College London Hospitals NHS Foundation Trust, London, UK
Correspondence
Rachel M. Taylor, Cancer Division, University College London Hospitals NHS Foundation Trust, London NW1 2PG UK.
Email: [email protected]
Search for more papers by this authorAbstract
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.
CONFLICT OF INTEREST
The authors have no conflict of interest to declare.
REFERENCES
- Bleyer, A., Barr, R., Reis, L., Whelan, J., & Ferrari, A. (2017). Cancer in adolescents and young adults ( 2nd ed.). London, UK: Springer International Publishing.
10.1007/978-3-319-33679-4_19 Google Scholar
- Brédart, A., Kop, J., Fiszer, C., Sigal-Zafrani, B., & Dolbeault, S. (2015). Breast cancer survivors’ perceived medical communication competence and satisfaction with care at the end of treatment. Psycho-Oncology, 24, 1670–1678. https://doi.org/10.1002/pon.3836
- CanTeen (2015). Exploring survivorship care for adolescent and young adult cancer survivors in Australia. Sydney, NSW: CanTeen Australia.
- Centre for Reviews and Dissemination (2009). Systematic reviews: CRD’s guidance for undertaking reviews in health care. York, UK: CRD, University of York.
- Choquette, A., Rennick, J. E., & Lee, V. (2016). Back to school after cancer treatment: Making sense of the adolescent experience. Cancer Nursing, 39(5), 393–401. https://doi.org/10.1097/NCC.0000000000000301
- Costa-Requena, G., Rodríguez, A., Fernández, R., Palomera, E., & Gil, F. L. (2011). Cognitive processing variables in breast cancer: Worry and distress at the end of treatment. Journal of Cancer Education, 26, 375–379. https://doi.org/10.1007/s13187-010-0140-8
- Daniel, L. C., Aggarwal, R., & Schwartz, L. A. (2017). Sleep in adolescents and young adults in the year after cancer treatment. Journal of Adolescent and Young Adult Oncology, 6(4), 560–567. https://doi.org/10.1089/jayao.2017.0006
- Decker, C. L., Haase, J. E., & Bell, C. J. (2007). Uncertainty in adolescents and young adults with cancer. Oncology Nursing Forum, 34(3), 681–688. https://doi.org/10.1188/07.ONF.681-688
- Docherty, S. L., Kayle, M., Maslow, G. R., & Santacroche, S. J. (2015). The adolescent and young adult with cancer: A developmental life course perspective. Seminars in Oncology Nursing, 31(3), 186–196. https://doi.org/10.1016/j.soncn.2015.05.006
- Fern, L. A., Taylor, R. M., Millington, H., Ashton, J., Grew, T., Brooman, K., … Gibson, F. (2013). The art of age-appropriate care: Reflecting on a conceptual model of the cancer experience for teenagers and young adults. Cancer Nursing, 36(5), e27–e38. https://doi.org/10.1097/NCC.0b013e318288d3ce
- Galan, S., De La Vega, R., Tome Pires, C., Racine, M., Sole, E., Jensen, M. P., & Miro, J. (2017). What are the needs of adolescents and young adults after a cancer treatment? A Delphi study. European Journal of Cancer Care, 26, e12488. https://doi.org/10.1111/ecc.12488
- Grant, M. J., & Booth, A. (2009). A typology of reviews: An analysis of 14 review types and associated methodologies. Health Information and Libraries Journal, 26, 91–108. https://doi.org/10.1111/j.1471-1842.2009.00848.x
- Hauken, M. A., Bogsnes Larsen, T. M., & Holsen, I. (2013). Meeting reality: Young adult cancer survivors’ experiences of reentering everyday life after cancer treatment. Cancer Nursing, 36(5), E17–E26. https://doi.org/10.1097/NCC.0b013e318278d4fc
- Hauken, M. A., & Viken, L. (2015). ‘It made me think a little different’ a qualitative study of young adult cancer survivors’ experiences of cognitive therapy in cancer rehabilitation. The International Journal of Psychosocial Rehabilitation, 20(1), 27–44.
- Henselmans, I., Helgeson, V. S., Seltman, H., de Vries, J., Sanderman, R., & Ranchor, A. V. (2010). Identification and prediction of distress trajectories in the first year after a breast cancer diagnosis. Health Psychology, 29(2), 160–168. https://doi.org/10.1037/a0017806
- Hiers, M., Suekarran, S., Slack, R., Light, K., Gibson, F., Glaser, A., … Phillips, R. (2013). A systematic review of models of care for the follow-up of childhood cancer survivors. Paediatric Blood and Cancer, 60(3), 351–356. https://doi.org/10.1002/pbc.24253
- Independent Cancer Taskforce (2015). Achieving world-class cancer outcomes: A strategy for England 2015–2020. Retrieved fromhttps://www.cancerresearchuk.org/sites/default/files/achieving_world-class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf
- James Lind Alliance (2018). Teenage and young adult cancer top 10. Retrieved from https://www.jla.nihr.ac.uk/priority-setting-partnerships/teenage-and-young-adult-cancer/the-top-10-priorities.htm
- Jones, J., Cheng, T., Jackman, M., Rodin, G., Walton, T., & Catton, P. (2010). Self-efficacy, perceived preparedness, and psychological distress in women completing primary treatment for breast cancer. Journal of Psychosocial Oncology, 28, 268–290. https://doi.org/10.1080/07347331003678352
- Jones, J. M., Cheng, T., Jackman, M., Walton, T., Haines, S., Rodin, G., & Catton, P. (2013). Getting back on track: Evaluation of a brief group psychoeducation intervention for women completing primary treatment for breast cancer. Psycho-Oncology, 22, 117–124. https://doi.org/10.1002/pon.2060
- Lea, S., Martins, A., Morgan, S., Cargill, J., Taylor, R. M., & Fern, L. A. (2018). Online information and support needs for young people with cancer: A participatory action research study. Adolescent Health, Medicine and Therapeutics, 9, 1–15.
- Lethaby, C. D., Picton, S., Kinsey, S. E., Phillips, R., van Laar, M., & Feltbower, R. G. (2013). A systematic review of time to diagnosis in children and young adults with cancer. Archives of Disease in Childhood, 5(8), 349–355. https://doi.org/10.1136/archdischild-2012-303034
- Masterton, K. J., & Tariman, J. D. (2016). Effective transitional therapy for adolescent and young adult patients with cancer: An integrative literature review. Clinical Journal of Oncology Nursing, 20(4), 391–397. https://doi.org/10.1188/16.CJON.391-396
- May, E., McGill, B., Robertson, E. D., Anazodo, A., Wakefield, C. E., & Sansom-Daly, U. M. (2018). Adolescent and young adult cancer survivors’ experiences of the healthcare system: A qualitative study. Journal of Adolescent and Young Adult Oncology, 7(1), 88–96.
- Millar, B., Patterson, P., & Desille, N. (2010). Emerging adulthood and cancer: How unmet needs vary with time-since-treatment. Palliative and Supportive Care, 8, 151–158. https://doi.org/10.1017/S1478951509990903
- Moody, L., Turner, A., Osmond, J., Hooker, L., Kosmala-Anderson, J., & Batehup, L. (2015). Web-based self-management for young cancer survivors: Consideration of user requirements and barriers to implementation. Journal of Cancer Survivorship, 9, 188–200. https://doi.org/10.1007/s11764-014-0400-4
- Muffly, L. S., Hlubocky, F. J., Khan, N., Wroblewski, K., Breitenback, K., Gomez, J. I., … Daugherty, C. K. (2016). Psychological morbidities in adolescent and young adult blood cancer patients during curative-intent therapy and early survivorship. Cancer, 122, 954–961. https://doi.org/10.1002/cncr.29868
- Nathan, P. C., Hayes-Lattin, B., Sisler, J. J., & Hudson, M. M. (2011). Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer, 117(10), 2335–2341. https://doi.org/10.1002/cncr.26042
- National Institute for Health and Clinical Excellence (2005). Improving outcomes in children and young people with cancer: The manual. London, UK: NICE.
- Pini, C., Gardner, P., & Hugh-Jones, S. (2013). The impact of a cancer diagnosis on the education engagement of teenagers – patient and staff perspective. European Journal of Oncology Nursing, 17, 317–323. https://doi.org/10.1016/j.ejon.2012.08.005
- Roper, K., Cooley, M. E., McDermott, K., & Fawcett, J. (2013). Health-related quality of life after treatment of Hodgkin Lymphoma in young adults. Oncology Nursing Forum, 40(4), 349–360. https://doi.org/10.1188/13.ONF.349-360
- Ruccione, K., Lu, Y., & Meeske, K. (2013). Adolescents’ psychosocial health-related quality of life within 6 months after cancer treatment completion. Cancer Nursing, 36(5), e61–e72. https://doi.org/10.1097/NCC.0b013e3182902119
- Shay, A. L., Parsons, H. M., & Vernon, S. W. (2017). Survivorship care planning and unmet information and service needs among adolescent and young adult cancer survivors. Journal of Adolescent and Young Adult Oncology, 6(2), 327–332. https://doi.org/10.1089/jayao.2016.0053
- Shen, A. H., Howell, D., Edwards, E., Warde, P., Matthew, A., & Jones, J. M. (2016). The experience of patients with early-stage testicular cancer during the transition from active treatment to follow-up surveillance. Urologic Oncology: Seminars and Original Investigations, 34(168), e11–e19.
- Smorti, M. (2012). Adolescents’ struggle against bone cancer: An explorative study on optimistic expectations of the future, resiliency and coping strategies. European Journal of Cancer Care, 21, 251–258. https://doi.org/10.1111/j.1365-2354.2011.01271.x
- Spathis, A., Hatcher, H., Booth, S., Gibson, F., Stone, P., Abbas, L., … Barclay, S. (2017). Cancer-related fatigue in adolescents and young adults after cancer treatment: Persistent and poorly managed. Journal of Adolescent and Young Adult Oncology, 6(3), 489–493. https://doi.org/10.1089/jayao.2017.0037
- Taylor, R. M., Feltbower, R. G., Aslam, N., Raine, R., Whelan, J. S., & Gibson, F. (2016). Modified international e-Delphi survey to define healthcare professional competencies for working with teenagers and young adults with cancer. British Medical Journal Open, 6, e011361. https://doi.org/10.1136/bmjopen-2016-011361
- Thompson, K., Palmer, S., & Dyson, G. (2009). Adolescents & young adults: Issues in transition from active therapy into follow-up care. European Journal of Oncology Nursing, 13, 207–212.
- Wilkins, K. L., D'Agostino, N. M., Penney, A. M., & Nathan, P. C. (2014). Supporting adolescents and young adults with cancer through transitions: Position statement from the Canadian task force on adolescents and young adults with cancer. Journal of Pediatric Hematology/Oncology, 36(7), 545–551. https://doi.org/10.1097/MPH.0000000000000103
- Zebrack, B. J., Chesler, M. A., & Penn, A. (2007). Psychosocial support. In A. W. Bleyer & R. D. Barr (Eds.), Cancer in adolescents and young adults (pp. 375–385). Berlin, Germany: Springer.
10.1007/978-3-540-68152-6_24 Google Scholar
