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Journal of Cancer Survivorship

, Volume 10, Issue 5, pp 814–831 | Cite as

Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review

  • Marie Barnett
  • Glynnis McDonnell
  • Antonio DeRosa
  • Tammy Schuler
  • Errol Philip
  • Lisa Peterson
  • Kaitlin Touza
  • Sabrina Jhanwar
  • Thomas M. Atkinson
  • Jennifer S. Ford
Review

Abstract

Purpose

A cancer diagnosis during adolescence or young adulthood (AYA; defined as ages 15–39) generates unique medical and psychosocial needs as developmental milestones are simultaneously impacted. Past research highlights that AYAs’ experiences and psychosocial outcomes are different, and more research and attention is needed. We aimed to identify and synthesize literature regarding psychosocial outcomes, unique needs, and existing psychosocial interventions pertaining to individuals diagnosed with cancer exclusively during AYA, and to highlight areas for future research.

Methods

A systematic literature search was conducted using MEDLINE (via PubMed), EMBASE, Cochrane, Web of Science, and PsycINFO (via OVID). Grey literature was searched using key term variations and combinations. Overall, 15,301 records were assessed by two independent reviewers, with 38 studies meeting inclusion criteria.

Results

Data synthesis of the 38 articles was organized by four main themes based on quality of life and survivorship: physical well-being (7 studies), psychological well-being (8 studies), social well-being (9 studies), and survivorship care (14 studies). The paucity of studies for such broad inclusion criteria highlights that this population is often combined or subsumed under other age groups, missing needs unique to these AYAs.

Conclusions

AYA cancer survivors’ experiences are nuanced, with interacting variables contributing to post-treatment outcomes. AYAs require age-appropriate and flexible care, informational needs and treatment-related education that foster autonomy for long-term survivorship, as well as improved follow-up care and psychological outcomes.

Implications for Cancer Survivors

By incorporating these findings into practice, the informational and unmet needs of AYAs can be addressed effectively. Education and programming is lacking specific and general subject matter specific to AYAs, incorporating ranging needs at different treatment stages.

Keywords

Adolescent Cancer survivorship Literature review Neoplasms Young adult 

Notes

Acknowledgments

The authors wish to acknowledge Dr. Jamie Ostroff for her mentorship and guidance for this manuscript.

Compliance with ethical standards

Funding

This research was supported by a National Institutes of Health Research Training Grant (T32 CA009461-25), as well as a National Institutes of Health Support Grant (P30 CA08748-49), which provides partial support for the Behavioral Research Methods Core Facility used in conducting this investigation.

Conflict of interest

The authors declare that they have no conflicts of interest.

References

  1. 1.
    Bleyer A, Barr R, Hayes-Lattin B, et al. The distinctive biology of cancer in adolescents and young adults. Nat Rev Cancer. 2008;8:288–98.CrossRefPubMedGoogle Scholar
  2. 2.
    Institute of Medicine. Identifying and addressing the needs of adolescents and young adults with cancer: workshop summary. Washington, DC: The National Academies Press; 2013.Google Scholar
  3. 3.
    Bleyer A, O’Leary M, Barr R, Ries LAG. Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975–2000. Bethesda: National Cancer Institute; 2006. NIH Pub. No. 06–5767.Google Scholar
  4. 4.
    Bleyer WA. Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and importance of clinical trials. Med Pediatr Oncol. 2002;38:1–10.CrossRefPubMedGoogle Scholar
  5. 5.
    Hewitt M, Greenfield S, Stovall S, editors. From cancer patient to cancer survivor: lost in translation. Washington, DC: The National Academies Press; 2005.Google Scholar
  6. 6.
    Albritton K, Bleyer WA. The management of cancer in the older adolescent. Eur J Cancer. 2003;39:2584–99.CrossRefPubMedGoogle Scholar
  7. 7.
    Evan EE, Zeltzer LK. Psychosocial dimensions of cancer in adolescents and young adults. Cancer. 2006;107:1663–71.CrossRefPubMedGoogle Scholar
  8. 8.
    Badr H, Chandra J, Paxton RJ, et al. Health-related quality of life, lifestyle behaviors, and intervention preferences of survivors of childhood cancer. J Cancer Surviv Res Pract. 2013;7:523–34.CrossRefGoogle Scholar
  9. 9.
    Bellizzi KM, Smith A, Schmidt S, et al. Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer. 2012;118:5155–62.CrossRefPubMedGoogle Scholar
  10. 10.
    Bloom JR, Stewart SL, D’Onofrio CN, Luce J, Banks PJ. Addressing the needs of young breast cancer survivors at the 5 year milestone: can a short-term, low intensity intervention produce change? J Cancer Surviv Res Pract. 2008;2:190–204.CrossRefGoogle Scholar
  11. 11.
    Carpenter PJ, Morrow GR, Schmale AH. The psychosocial status of cancer patients after cessation of treatment. J Psychosoc Oncol. 1989;7:95–103.CrossRefGoogle Scholar
  12. 12.
    Carpentier MY, Fortenberry JD, Ott MA, Brames MJ, Einhorn LH. Perceptions of masculinity and self-image in adolescent and young adult testicular cancer survivors: implications for romantic and sexual relationships. Psychooncology. 2011;20:738–45.CrossRefPubMedGoogle Scholar
  13. 13.
    D’Agostino NM, Edelstein K. Psychosocial challenges and resource needs of young adult cancer survivors: implications for program development. J Psychosoc Oncol. 2013;31:585–600.CrossRefPubMedGoogle Scholar
  14. 14.
    Deyell RJ, Lorenzi M, Ma S, et al. Antidepressant use among survivors of childhood, adolescent and young adult cancer: a report of the childhood, adolescent and young adult cancer survivor (CAYACS) research program. Pediatr Blood Cancer. 2013;60:816–22.CrossRefPubMedGoogle Scholar
  15. 15.
    Dieluweit U, Seitz DCM, Besier T, et al. Utilization of psychosocial care and oncological follow-up assessments among German long-term survivors of cancer with onset during adolescence. Klin Padiatr. 2011;223:152–8.CrossRefPubMedGoogle Scholar
  16. 16.
    Dyson GJ, Thompson K, Palmer S, Thomas DM, Schofield P. The relationship between unmet needs and distress amongst young people with cancer. Support Care Cancer. 2012;20:75–85.CrossRefPubMedGoogle Scholar
  17. 17.
    Gorman JR, Usita PM, Madlensky L, Pierce JP. Young breast cancer survivors: their perspectives on treatment decisions and fertility concerns. Cancer Nurs. 2011;34:32–40.CrossRefPubMedPubMedCentralGoogle Scholar
  18. 18.
    Harlan LC, Lynch CF, Keegan THM, et al. Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study. J Cancer Surviv. 2011;5:305–14.CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Hauken M, Larsen TMB, Holsen I. Meeting reality: young adult cancer survivors’ experiences of reentering everyday life after cancer treatment. Cancer Nurs. 2013;36:E17–26.CrossRefPubMedGoogle Scholar
  20. 20.
    Keegan THM, Lichtensztajn DY, Kato I, et al. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv Res Pract. 2012;6:239–50.CrossRefGoogle Scholar
  21. 21.
    Keim-Malpass J, Steeves RH. Talking with death at a diner: young women’s online narratives of cancer. Oncol Nurs Forum. 2012;39:373–8. 406.CrossRefPubMedGoogle Scholar
  22. 22.
    Keim-Malpass J, Baernholdt M, Erickson JM, et al. Blogging through cancer young women’s persistent problems shared online. Cancer Nurs. 2013;36:163–72.CrossRefPubMedGoogle Scholar
  23. 23.
    Kirchhoff AC, Lyles CR, Fluchel M, Wright J, Leisenring W. Limitations in health care access and utilization among long-term survivors of adolescent and young adult cancer. Cancer. 2012;118:5964–72.CrossRefPubMedGoogle Scholar
  24. 24.
    Lee RJ, Wakefield A, Foy S, et al. Facilitating reproductive choices: the impact of health services on the experiences of young women with breast cancer. Psychooncology. 2011;20:1044–52.CrossRefPubMedGoogle Scholar
  25. 25.
    Love C, Sabiston CM. Exploring the links between physical activity and posttraumatic growth in young adult cancer survivors. Psychooncology. 2011;20:278–86.CrossRefPubMedGoogle Scholar
  26. 26.
    Mattson MR, Demshar RK, Daly BJ. Quality of life of young adult survivors of hematologic malignancies. Cancer Nurs. 2013;36:E1–7.CrossRefPubMedGoogle Scholar
  27. 27.
    Miedema B, Hamilton R, Easley J. From “invincibility” to “normalcy”: coping strategies of young adults during the cancer journey. Palliat Support Care. 2007;5:41–9.CrossRefPubMedGoogle Scholar
  28. 28.
    Miedema B, Easley JK, Robinson LM. Comparing urban and rural young adult cancer survivors’ experiences: a qualitative study. Rural Remote Health. 2013;13:2324.PubMedGoogle Scholar
  29. 29.
    Millar B, Patterson P, Desille N. Emerging adulthood and cancer: how unmet needs vary with time-since-treatment. Palliat Support Care. 2010;8:151–8.CrossRefPubMedGoogle Scholar
  30. 30.
    Mumma GH, Mashberg D, Lesko LM. Long-term psychosexual adjustment of acute leukemia survivors: impact of marrow transplantation versus conventional chemotherapy. Gen Hosp Psychiatry. 1992;14:43–55.CrossRefPubMedGoogle Scholar
  31. 31.
    O’Callaghan C, Barry P, Thompson K. Music’s relevance for adolescents and young adults with cancer: a constructivist research approach. Support Care Cancer. 2012;20:687–97.CrossRefPubMedGoogle Scholar
  32. 32.
    Park CL, Cho D, Wortmann JH. The impact of yoga upon young adult cancer survivors. Complement Ther Clin Pract. 2013;19:77–82.CrossRefPubMedGoogle Scholar
  33. 33.
    Parsons JA, Eakin JM, Bell RS, Franche RL, Davis AM. “So, are you back to work yet?” Re-conceptualizing ‘work’ and ‘return to work’ in the context of primary bone cancer. Soc Sci Med. 2008;67:1826–36.CrossRefPubMedGoogle Scholar
  34. 34.
    Parsons HM, Harlan LC, Lynch CF, et al. Impact of cancer on work and education among adolescent and young adult cancer survivors. J Clin Oncol. 2012;30:2393–400.CrossRefPubMedPubMedCentralGoogle Scholar
  35. 35.
    Phillips-Salimi CR, Andrykowski MA. Physical and mental health status of female adolescent/young adult survivors of breast and gynecological cancer: a national, population-based, case–control study. Support Care Cancer. 2013;21:1597–604. 1–8.CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Rabin C, Simpson N, Morrow K, Pinto B. Behavioral and psychosocial program needs of young adult cancer survivors. Qual Health Res. 2011;21:796–806.CrossRefPubMedGoogle Scholar
  37. 37.
    Rabin C, Simpson N, Morrow K, Pinto B. Intervention format and delivery preferences among young adult cancer survivors. Int J Behav Med. 2013;20:304–10.CrossRefPubMedGoogle Scholar
  38. 38.
    Sammallahti P, Lehto-Salo P, Maenpaa H, Elomaa I, Aalberg V. Psychological defenses of young osteosarcoma survivors. Psychooncology. 1995;4:283–6.CrossRefGoogle Scholar
  39. 39.
    Tai E, Buchanan N, Townsend J, et al. Health status of adolescent and young adult cancer survivors. Pediatr Blood Cancer. 2012;58:1066.Google Scholar
  40. 40.
    Thompson K, Palmer S, Dyson G. Adolescents & young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009;13:207–12.CrossRefPubMedGoogle Scholar
  41. 41.
    Valle CG, Tate DF, Mayer DK, Allicock M, Cai J. A randomized trial of a Facebook-based physical activity intervention for young adult cancer survivors. J Cancer Surviv Res Pract. 2013.Google Scholar
  42. 42.
    Yanez B, Garcia SF, Victorson D, Salsman JM. Distress among young adult cancer survivors: a cohort study. Support Care Cancer. 2013;21:2403–8.CrossRefPubMedGoogle Scholar
  43. 43.
    Zebrack B, Bleyer A, Albritton K, Medearis S, Tang J. Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer. 2006;107:2915–23.CrossRefPubMedGoogle Scholar
  44. 44.
    Zebrack BJ, Mills J, Weitzman TS. Health and supportive care needs of young adult cancer patients and survivors. J Cancer Surviv. 2007;1:137–45.CrossRefPubMedGoogle Scholar
  45. 45.
    Zebrack B, Chesler MA, Kaplan S. To foster healing among adolescents and young adults with cancer: what helps? What hurts? Support Care Cancer. 2010;18:131–5.CrossRefPubMedGoogle Scholar
  46. 46.
    Downs SH, Black N. The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health. 1998;52:377–84.CrossRefPubMedPubMedCentralGoogle Scholar
  47. 47.
    Senn SJ. Overstating the evidence: double counting in meta-analysis and related problems. BMC Med Res Methodol. 2009;9:10.CrossRefPubMedPubMedCentralGoogle Scholar
  48. 48.
    Nass SJ, Beaupin LK, Demark-Wahnefried W, et al. Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop. Oncologist. 2015;20:186–95.CrossRefPubMedPubMedCentralGoogle Scholar
  49. 49.
    NCI. Survivorship. National Cancer Institute at the National Institutes of Health. Available from: http://www.cancer.gov/about-cancer/coping/survivorship Accessed 1 Feb 2016.
  50. 50.
    Cassileth BR, Keefe FJ. Integrative and behavioral approaches to the treatment of cancer-related neuropathic pain. Oncologist. 2010;15 Suppl 2:19–23.CrossRefPubMedGoogle Scholar
  51. 51.
    Cassileth BR. The complete guide to complementary therapies in cancer care. WSPC: Singapore; 2011.CrossRefGoogle Scholar
  52. 52.
    Zebrack BJ, Mills J, Weitzman TS. Health and supportive care needs of young adult cancer patients and survivors. J Cancer Surviv Res Pract. 2007;1:137–45.CrossRefGoogle Scholar
  53. 53.
    Miedema B, Easley J, Robinson LM. Do current cancer follow-up care practices meet the needs of young adult cancer survivors in Canada? A qualitative inquiry. Curr Oncol. 2013;20:14–22.CrossRefPubMedPubMedCentralGoogle Scholar
  54. 54.
    Rabin C, Simpson N, Morrow K, Pinto B. Intervention format and delivery preferences among young adult cancer survivors. Int J Behav Med. 2013;20:304–10.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Marie Barnett
    • 1
  • Glynnis McDonnell
    • 2
    • 3
  • Antonio DeRosa
    • 2
  • Tammy Schuler
    • 2
    • 4
  • Errol Philip
    • 5
  • Lisa Peterson
    • 2
  • Kaitlin Touza
    • 6
  • Sabrina Jhanwar
    • 2
  • Thomas M. Atkinson
    • 2
  • Jennifer S. Ford
    • 2
  1. 1.Columbia University Medical CenterNew YorkUSA
  2. 2.Department of Psychiatry & Behavioral SciencesMemorial Sloan Kettering Cancer CenterNew YorkUSA
  3. 3.St. John’s University Department of PsychologyQueensUSA
  4. 4.Association for Behavioral and Cognitive TherapiesNew YorkUSA
  5. 5.The Notre Dame Laboratory for Psycho-oncology ResearchNotre DameUSA
  6. 6.Indiana University-Purdue University IndianapolisIndianapolisUSA

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