Young adult cancer survivors’ experience with cancer treatment and follow-up care and perceptions of barriers to engaging in recommended care
Open accessAbstract
We examined correlates of low engagement in the healthcare system, experiences with survivorship care, barriers to follow-up care, and potential resources for promoting follow-up care among young adult survivors of childhood cancers. We conducted a mixed-method study involving surveys of 106 survivors of childhood cancer aged 18-34 recruited from a university-affiliated children's hospital and an NCI-designated cancer center in the Southeastern USA. Phone-based semistructured interviews were then conducted in a subset of 26. Assessments included health factors, psychosocial factors, healthcare system interaction, and interest in resources to promote engagement in healthcare. Survey participants were on average 22.14 (SD = 3.16) years old, 50.0 % female, and 77.4 % White. Overall, 46.0 % had attended survivorship clinic, 47.2 % reported receiving a treatment summary, 68.9 % had a primary care provider, and 17.0 % reported no interaction with healthcare in the past 2 years. Correlates of less than annual healthcare provider visits included being older (p = 0.003), being male (p < 0.001), lack of insurance (p = 0.002), and having had chemotherapy (p = 0.05). Participants reported varied experiences in terms of how health and treatment information was presented, from none or too little to overwhelming or anxiety-provoking amounts. Barriers to engaging in survivorship care included no/limited insurance, time, or transportation; major life changes; anxiety; and difficulty transitioning from pediatrics to adult care. Participants highlighted the need for educational and psychosocial resources, particularly technology-based resources. Multilevel interventions are needed to increase engagement in survivorship care among young adult cancer survivors. Technology-based resources addressing social support and mental well-being are intervention possibilities.
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The scalability of face-to-face survivorship interventions may be limited given the intensive resources involved for the health system and for young adults.
“their scalability may be limited given the intensive resources involved for both: 1) the health system, which faces limitations regarding skilled personnel and mechanisms to sustain financial support to deliver such interventions; and 2) YAs, who are navigating several life demands during their survivorship period (e.g., re-engaging with family and occupational goals) [44, 45].”
From A digital, coach-assisted intervention to address the psychosocial needs of young adult cancer survivors: Randomized controlled trial protocol and intervention adaptation process (2024) · cites this paper as [45]
The Introduction (page not provided) identifies limited provider expertise, clinician preparation time, clinical space, and reimbursement as system-level barriers. The Results (page not provided) report time constraints and life changes, including starting a family or going to college, as barriers for young adults. The paper does not assess the scalability of face-to-face interventions or the resources required to deliver them, so that conclusion goes beyond its findings. (LLM, conf=0.84)
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Self-citation
- Authors
- Berg, C. J., Stratton, E., Esiashvili, N., & Mertens, A.
- Affiliations
- Emory University (US)
- Corresponding author
- Berg, Carla J.
- Venue
- Journal of Cancer Education
- Published
- 2015-05-07
- Volume
- 31
- Issue
- 3
- Pages
- 430-442
- ISSN
- 0885-8195 (ISSN-L)
- 1543-0154
- PMC
- PMC4712118
- OpenAlex
- W1913678855
- Cited by
- 110
- References
- 34
- Citations by year
- 2026: 8 · 2025: 11 · 2024: 8 · 2023: 10 · 2022: 11 · 2021: 17 · 2020: 9 · 2019: 12 · 2018: 7 · 2017: 10 · 2016: 5 · 2015: 2
- FWCI
- 61.68
- Type
- book chapter
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Journal of Cancer Education (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Cancer Institute (K07CA139114, P30CA138292)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Keywords
- young adult cancer survivors, childhood cancer survivors, survivorship care, barriers to health care access, health insurance, transition from pediatric to adult care, psychosocial resources, social support, psychological well-being, treatment summaries
- MeSH terms
- Cancer Survivors, Adolescent, Adult, Aftercare, Attitude of Health Personnel, Continuity of Patient Care, Female, Humans, Male, Neoplasms, Patient Care Planning, Perception, Prognosis, Survival Rate, Young Adult
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