Survivorship needs of adolescent and young adult cancer survivors: a concept mapping analysis
Adolescents and young adults (AYAs) with cancer are known to have complex medical and psychosocial needs throughout treatment; however, information is lacking about the challenges AYA survivors face after treatment has ended. Focus groups were conducted using a concept mapping framework to better understand the most important issues these patients face in transitioning to survivorship and how prepared they felt to face them.
AYAs diagnosed between 18 and 39 years old and at least 2 years post-treatment participated in one of six focus groups based on age group and follow-up status. Using a concept mapping design, participants provided important issues during the transition to survivorship and appraised them on three core areas of interest.
Analyses revealed salient themes shared across age and follow-up group status, particularly related to the psychosocial, emotional, and cognitive effects of treatment. Differential concerns included those related to patients’ developmental concerns—namely, finding a new identity, financial burden of treatment, and fertility concerns after treatment.
AYA cancer survivors continue to have a myriad of issues beyond the immediate treatment phase. Despite a complex list of challenges, these issues largely remained unaddressed by their oncology provider and left patients feeling overwhelmingly ill-prepared to manage their transition to survivorship.
Implications for Cancer Survivors
AYA cancer survivors have many unaddressed concerns as they transition out of active cancer treatment, largely related to developmental issues they are facing. Survivorship care for these patients would benefit from care planning that takes these unique concerns into account.
KeywordsAdolescents and young adults Cancer Cancer survivors Concept mapping Oncology Survivorship
This study was funded by the American Cancer Society (Institutional Research Grant #IRG-02-197-09).
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
- 1.Altekruse S, Kosary CL, Rapcho M, et al. SEER Cancer Statistics Review, 1975–2007. National Cancer Institute; Bethesda MD. 2010. http://seer.cancer.gov/csr/1975_2007, based on November 2009 SEER data submission. Accessed 12 Apr 2018.
- 2.National Cancer Institute Cancer Control and Population Sciences. Estimated US Cancer Prevalence. 2010. http://cancercontrol.cancer.gov/ocs/prevalence/prevalence.html. Accessed 12 Apr 2018.
- 3.Crom DB, Lensing SY, Rai SN, Snider MA, Cash DK, Hudson MM. Marriage, employment, and health insurance in adult survivors of childhood cancer. J Cancer Surviv. 2007;1(3):237–45.Google Scholar
- 4.Maltaris T, Boehm D, Dittrich R, Seufert R, Koelbl H. Reproduction beyond cancer: a message of hope for young women. Gynecol Oncol. 2006;103(3):1109–21.Google Scholar
- 5.Mertens AC, Liu Q, Neglia JP, Wasilewski K, Leisenring W, Armstrong GT, et al. Cause-specific late mortality among 5-year survivors of childhood cancer: the childhood cancer survivor study. J Natl Cancer Inst. 2008;100(19):1368–79.Google Scholar
- 6.Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82.Google Scholar
- 7.Soliman H, Agresta SV. Current issues in adolescent and young adult cancer survivorship. Cancer Control. 2008;15(1):55–62.Google Scholar
- 8.Lee JS, Dubois SG, Coccia PF, et al. Increased risk of second malignant neoplasms in adolescents and young adults with cancer. Cancer. 2016;122(1):116–23.Google Scholar
- 9.Gray RE, Doan BD, Shermer P, Fitzgerald AV, Bery MP, Jenkin D, et al. Psychological adaptation of survivors of childhood cancer. Cancer. 1992;70:2713–21.Google Scholar
- 10.Teta MJ, Del Po MC, Kasl SV, et al. Psychosocial consequences of childhood and adolescent cancer survival. J Chronic Dis. 1986;39:751–9.Google Scholar
- 11.Chang PH, Nesbit ME, Youngren N, et al. Personality characteristics and psychosocial adjustment of long term survivors of childhood cancer. J Psychosoc Oncol. 1987;5:43–58.Google Scholar
- 12.Byrne J, Fears RT, Steinhorn SC, et al. Marriage and divorce after childhood and adolescent cancer. JAMA. 1989;262:2693–9.Google Scholar
- 13.Kroenke CH, Rosner B, Chen WY, Kawachi I, Colditz GA, Holmes MD. Functional impact of breast cancer by age at diagnosis. J Clin Oncol. 2004;22(10):1849–56.Google Scholar
- 14.Mazanec SR, Daly BJ, Douglas SL, Lipson AR. The relationship between optimism and quality of life in newly diagnosed cancer patients. Cancer Nurs. 2010;33(3):235–43.Google Scholar
- 15.Duffey-Lind EC, O'Holleran E, Healey M, et al. Transitioning to survivorship: a pilot study. J Pediatr Oncol Nurs. 2006;23(6):335–43.Google Scholar
- 16.Hewitt M, Greenfield S, Stovall E. From cancer patient to cancer survivor: lost in transition. Washington, DC: National Academies Press; 2006.Google Scholar
- 17.Landier W. Survivorship care: essential components and models of delivery. Oncol. (Williston Park). 2009;23(4):46–53.Google Scholar
- 18.Butow P, Palmer S, Pai A, Goodenough B, Luckett T, King M. Review of adherence-related issues in adolescents and young adults with cancer. J Clin Oncol. 2010;28(32):4800–9.Google Scholar
- 19.Kondryn HJ, Edmondson CL, Hill J, Eden TOB. Treatment non-adherence in teenage and young adult patients with cancer. Lancet Oncol. 2011;12(1):100–8.Google Scholar
- 20.Ruddy K, Mayer E, Partridge A. Patient adherence and persistence with oral anticancer treatment. CA Cancer J Clin. 2009;59(1):56–66.Google Scholar
- 21.Partridge AH, Archer L, Kornblith AB, Gralow J, Grenier D, Perez E, et al. Adherence and persistence with oral adjuvant chemotherapy in older women with early-stage breast cancer in CALGB 49907: adherence companion study 60104. J Clin Oncol. 2010;28(14):2418–22.Google Scholar
- 22.Trochim WMK. An introduction to concept mapping for planning and evaluation. Eval Program Plann. 1989;12:1–16.Google Scholar
- 23.Zebrack BJ, Mills J, Weitzman TS. Health and supportive care needs of young adult cancer patients and survivors. J Cancer Surviv. 2007;1(2):137–45.Google Scholar
- 24.Nathan PC, Hayes-Lattin B, Sisler JJ, Hudson MM. Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer. 2011;117:2335–41.Google Scholar
- 25.Zebrack BJ, Hamilton R, Smith AW. Psychosocial outcomes and service use among young adults with cancer. Semin Oncol. 2009;36(5):468–77.Google Scholar
- 26.Children’s Oncology Group. Long-Term Follow-up Guidelines, Version 4.0. 2013. http://www.survivorshipguidelines.org/pdf/LTFUGuidelines_40.pdf. Accessed 20 Apr 2018.
- 27.Denlinger CS, Sanft T, Baker KS, Baxi S, Broderick G, Demark-Wahnefried W, et al. Survivorship, version 2.2017, NCCN clinical practice guidelines in oncology. J Natl Compr Cancer Netw. 2017;15:1140–63.Google Scholar
- 28.Zebrack, B. Psychological, social, and behavioral issues for young adults with cancer. Cancer. 2011;117 (S10):2289–2294.Google Scholar
- 29.Zebrack BJ, Chesler M. Health-related worries, self-image, and life outlooks of long-term cancer survivors of childhood cancer. Health Soc Work. 2001;26(4):245–56.Google Scholar
- 30.Barnett M, McDonnell G, DeRosa A, Schuler T, Philip E, Peterson L, et al. Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review. J Cancer Surviv. 2016;10(5):814–31.Google Scholar
- 31.Shay LA, Capentier MY, Vernon SW. Prevalence and correlates of fear of recurrence among adolescent and young adult versus older adult post-treatment cancer survivors. Support Care Cancer. 2016;24(11):4689–96.Google Scholar
- 32.Roth ME, O’Mara AM, Seibel NL, Dickens DS, Langevin AM, Pollock BH, et al. Low enrollment of adolescents and young adults onto cancer trials: insights from the community clinical oncology program. J Oncol Pract. 2016;12(4):e388–95.Google Scholar