The purpose was to review main challenges experienced by adolescent and young adult (AYA) cancer survivors (18–34 years) during transition to survivorship and their suggestions regarding improvements needed in care.
Methods:
A national survey was conducted to identify experiences with follow-up care 1–3 years after cancer treatment. The survey included open-ended questions for respondents to add topics of importance and details for deeper insight. This study presents analysis of open-ended questions about main challenge faced by AYA respondents and their suggestions for improvements in care.
Results:
Of 575 AYA survey respondents, 497 (86.4%) commented regarding main challenges. Twenty-one indicated that they had no challenges. Of those reporting challenges, 209 (43.9%) named one challenge, 267 (56.1%) identified more than one. In total, 955 challenges were identified with the most frequently cited being physical (n = 462, 48.4%) and psychological (n = 234, 24.5%). A total of 391 survivors wrote 679 suggestions about improvements in care with the majority (n = 248, 69.4%) offering more than one. The most frequently cited suggestions included information/communication (n = 191, 29.8%), naming a range of topics for which information was desired, and access to post-treatment therapies/services (n = 164, 25.5%) such as counseling, physiotherapy, and occupational therapy. The overarching theme was, “I need follow-up care that fits me.”
Conclusions:
AYA cancer survivors are diverse and face unique challenges following treatment, which can have life-long implications and impede their recovery. Personalized follow-up care is highly recommended by these survivors.
Get full access to this article
View all access options for this article.
References
1.
BarrRD, FerrariA, RiesL, et al.Cancer in adolescents and young adults: a narrative review of the current status and a view of the future. JAMA Pediatr. 2016; 170(5):495–501.
2.
CloseAG, DrezinA, MillerKD, et al.Adolescent and young adult oncology—past, present, and future. CA Cancer J Clin. 2019; 69(6):485–96.
3.
FerrariA, BarrRD. International evolution in AYA oncology: current status and future expectations. Pediatr Blood Cancer. 2017; 64(9):1–8.
4.
NassSJ, BeaupinLK, Denmark-WahnefriedW, et al.Identifying and addressing the needs for adolescents and young adults with cancer: summary of an Institute of Medicine Workshop. Oncologist. 2015; 20(2):186–95.
5.
EvanEE, ZelterLK. Psychosocial dimensions of cancer in adolescents and young adults. Cancer. 2006; 107(7Suppl):1663–71.
6.
TreadgoldCL, KuperbergA. Been there, done that, wrote the Blog: the choices and challenges of supporting adolescents and young adults with cancer. J Clin Oncol. 2010; 28(32):4842–9.
7.
NathanPC, Hayes-LattinB, SislerJ, HudsonM. Critical issues in transition and survivorship for adolescents and young adults with cancer. Cancer. 2011; 117(10Suppl):2335–41.
8.
KeeganTHM, LichtensztajnDY, KatoI, et al.Unmet adolescent and young adult cancer survivors' information and service needs: a population-based cancer registry study. J Cancer Surviv. 2012; 6(3):239–50.
9.
TreanorC, SantinO, MillsM, DonnellyM. Cancer survivors with self-reported late effects: their health status, care needs and service utilization. Psychooncology. 2013; 22(11):2428–35.
10.
TaylorRM, PearceS, GibsonF, et al.Developing a conceptual model of teenage and young adults' experiences of cancer through meta-synthesis. Int J Nurs Stud. 2013; 50(6):832–46.
11.
KwakM, ZebrackBJ, MeeskeKA, et al.Trajectories of psychological distress in adolescent and young adult patients with cancer: a 1-year longitudinal study. J Clin Oncol. 2013; 31(17):2160–6.
12.
ThomasDM, AlbrittonKH, FerrariA. Adolescent and young adult oncology: an emerging field. J Clin Oncol. 2010; 28(32):4781–2.
13.
FernandezC, FraserG, FreemanC, et al.Principles and recommendations for the provision of healthcare in Canada to adolescent and young adult-aged cancer patients and survivors. J Adolesc Young Adult Oncol. 2011; 1(1):53–9.
14.
RobinsonLL. Opportunities and challenges of establishing a nationwide strategy for adolescents and young adults in Canada with cancer. Cancer. 2011; 117(10Suppl):2351–4.
15.
GuptaAA, PapadakosJK, JonesJM, et al.Reimaging care for adolescent and young adult cancer programs: moving with the times. Cancer. 2016; 122(7):1038–46.
16.
SmithAW, ParsonsHM, KentEE, et al.Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: AYA HOPE study. Front Oncol. 2013; 3(75):1–11.
17.
HydemanJA, UwazurikeOC, AdeyemiEI, BeaupinL. Survivorship needs of adolescents and young adult cancer survivors: a concept mapping analysis. J Cancer Surviv. 2019; 13(1):34–42.
18.
SawyerSM, McNeilR, McCarthyM, et al.Unmet need for health care services in adolescents and young adults with cancer and their parent carers. Support Care Cancer. 2017; 25(7):2229–39.
19.
QuinnGP, GoncalvesV, SehovicI, et al.Quality of life in adolescent and young adult cancer patients: a systematic review of the literature. Patient Relat Outcome Meas. 2015; 6:19–51.
20.
SironiG, BarrRD, FerrariA. A models of care—there is more than one way to deliver. Cancer. 2018; 24(6):315–20.
21.
SmithAW, KeeganT, HamiltonA, et al. Understanding care and outcomes in adolescents and young adults with cancer: a review of the AYA HOPE study. Pediatr Blood Cancer .2019;66(1):e27486.
22.
BarnettM, MacDonnellG, DeRosaA, 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.
23.
FitchMI, ZomerS, LockwoodG, et al.Experiences of adult cancer survivors in transition. Support Cancer Care. 2019; 27(8):2977–86.
24.
HopkinsL, HamptonBS, AbbottJF, et al.To the point: medical education, technology, and the millennial learner. Am J Obstet Gynecol. 2018; 218(2):188–92.
25.
LourencoAP, CronanJJ. Teaching and working with millennial trainees: impact on radiological education and work performance. J Am Coll Radiol. 2017; 14(1):92–5.
26.
MyersKK, SadaghianiK. Millennials in the workplace: a communication perspective on millennials' organizational relationships and performance. J Bus Psychol. 2010; 25(2):225–38.
27.
RobertsDH, NewmanLR, SchwartzsteinRM. Twelve tips for facilitating millennials' learning. Med Teach. 2012; 34(4):274–8.
28.
DiesingG. Millennials: who they are, what they want and why you need them. Hosp Health Netw. 2016; 90(11):22–7.
EbelingPA, DentDL, KempenichJW. The millennials have arrived: what the surgeon educator needs to know to teach millennials. Surgery. 2020; 167(2):265–8.
31.
Canadian Partnership Against Cancer (CPAC). Living with cancer: a report on the patient experience. Toronto: CPAC; 2018; p. 52.
32.
ThorneS. Data analysis in qualitative research. Evid Based Nurs. 2000; 3:68–70.
33.
HsiehH-F, ShannonSE. Three approaches to qualitative content analysis. Qual Health Res. 2005; 15(9):1277–88.
34.
Institute of Medicine. Crossing the Quality Chasm: a new health system for the 21st century. Washington, DC: National Academy Press; 2001.
35.
FitchMI, NicollI, LockwoodG. Cancer survivor's perspectives on the major challenge in the transition to survivorship. Patient Educ Couns. 2020; 24:S0738-3991(20)30205-6.
36.
FitchMI, NicollI, LockwoodG. Positive cancer experiences: perspectives from cancer survivors. J Patient Exp. 2020 [Epub ahead of print]; DOI: 10.1177/2374373520942420.
37.
ThompsonK, PalmerS, DysonG. Adolescents and young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009; 13(3):207–12.
38.
ZebrackB, BleyerA, AlbrittonK, et al.Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer. 2006; 107(12):2915–23.
39.
ThompsonK, DysonG, HollandL, JoubertL. An exploratory study of oncology specialists' understanding of the preferences of young people living with cancer. Soc Work Health Care. 2013; 52(2–3):166–90.
40.
LoiselleCG, HowellD, NicollI, FitchM. Toward the development of a comprehensive cancer experience measurement framework. Support Care Cancer. 2019; 27(7):2579–89.
41.
DamschroderLJ, AronDC, KeithRE, et al.Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implementation Science. 2009; 4:50.
42.
GaglioB, ShoupJ, GlasgowRE. The RE-AIM framework: a systematic review of use over time. Am J Public Health. 2013; 103(6):e38–46.
NekhlyudovL, MollicaMA, JacobsenPB, et al.Developing a quality of cancer survivorship care framework: implications for clinical care, research, and policy. J Natl Cancer Inst. 2019; 111(11):1120–30.
45.
NekhlyudovL, ChanR. Delivering long-term cancer care in primary care. Br J Gen Pract. 2020; 70(694):226–7.
46.
PrithwishD, EllisonLF, BarrRD, et al.Canadian adolescents and young adults with cancer: opportunity to improve coordination and level of care. CMAJ. 2010; 183(3):e187–94.
47.
GreenT, BonnerA, TeleniL, et al.Use and reporting of experience-based codesign studies in the healthcare setting: a systematic review. BMJ Qual Saf. 2020; 29(1):64–76.
