Improving Symptom Management for Survivors of Young Adult Cancer: Development of a Novel Intervention
Open accessAbstract
Purpose: Improved symptom management is a critical although unmet post-treatment need for young adult (YA) cancer survivors (aged 18–39 at diagnosis). This study aimed to develop and refine a behavioral symptom management intervention for YA survivors. Methods: Phase I: YA survivors (N = 21) and oncology providers (N = 11) completed individual interviews and an online, self-report assessment to examine symptom experiences, the need for a behavioral symptom management intervention for YAs, and perceptions about potential intervention components, structure, and format. Phase II: YA survivors (N = 10) completed user testing sessions, providing feedback on the prototype intervention materials (paper manual and mobile application), and completed an online assessment. Quantitative data were examined using descriptive statistics. Rapid qualitative analysis, a methodologically rigorous standardized approach, was used. Results: Pain, fatigue, and distress were ranked as top concerns by most YAs and providers. Phase I interviews underscored the need for a symptom management intervention for YAs. YAs and providers highlighted potential coping strategies and program format/structure suggestions (e.g., small group format) to best meet YAs' needs. A prototype intervention was developed combining the following: traditional behavioral symptom coping skills; home-based physical activity; strategies from Acceptance and Commitment Therapy and Meaning-Centered Psychotherapy; and strategies to foster self-compassion. Phase II user testing sessions highlighted strengths and suggestions for refining the prototype materials. Conclusion: Post-treatment symptoms are common for YAs. A tailored behavioral symptom management program was developed and refined with input from YAs and providers and will be examined for feasibility and acceptability in a pilot randomized controlled trial. Clinical Trial:Clinicaltrials.gov identifier NCT04035447
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YA have limited opportunities to connect with other YA with cancer following diagnosis and often feel as though their peers, family, and members of their community do not understand what it is like to be a young person who has had cancer.
“Our work [33] and the work of others [53, 54, 85] suggest that YA have limited opportunities to connect with other YA with cancer following diagnosis and often feel as though their peers, family, and members of their community do not understand what it is like to be a young person who has had cancer.”
From Improving symptom management for survivors of young adult cancer: rationale and study protocol for a pilot randomized controlled trial (2024) · cites this paper as [33]
In the Phase II user-testing feedback (Table 4), the paper says many young adults feel alone because others in their lives “don’t get it.” The intervention-development interviews also report that survivors valued meeting other young survivors who understood their experiences. The paper does not establish that young adults generally have limited opportunities to make those connections following diagnosis. (LLM, conf=0.84)
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References 72 · Cited by 10
Research works printed but not linked: 3
- Walker AJ, Lewis FM. Adolescent and young adult cancer survivorship. A systematic review of end-of-treatment and early post-treatment. Nurs Palliat Care 2016;1(1):1-6; doi: 10.15761/NPC.1000101 · DOI
- US Department of Health and Human Services, National Institutes of Health, National Cancer Institute, et al. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer, A Report of the Adolescent and Young Adult Oncology Progress Review Group. NIH: Bethesda, MD; 2006.
- Hamilton AB. Rapid Qualitative Methods in Health Servivces Research: Spotlight on Women's Health VA. In: Spotlight on Women's Health. (Series HDNC. ed.); 2013.
- Authors
- Dorfman, C. S., Shelby, R. A., Stalls, J. M., Somers, T. J., Keefe, F. J., Vilardaga, J. P., Winger, J. G., Mitchell, K., Ehren, C., & Oeffinger, K. C.
- Affiliations
- Duke University (US)
- Duke Medical Center (US)
- Corresponding author
- Dorfman, Caroline S.
- ORCID
- Venue
- Journal of Adolescent and Young Adult Oncology
- Publisher
- SAGE Publications
- Published
- 2023-08-01
- Volume
- 12
- Issue
- 4
- Pages
- 472-487
- ISSN
- 2156-5333 (ISSN-L)
- 2156-535X
- PMC
- PMC10457621
- OpenAlex
- W4298089166
- Cited by
- 10
- References
- 72
- Citations by year
- 2026: 2 · 2025: 4 · 2024: 2 · 2023: 2
- FWCI
- 0.84
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Adolescent and Young Adult Oncology (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institutes of Health
- National Cancer Institute (K08CA245107)
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cancer-related cognitive impairment studies
- Keywords
- young adult cancer survivors, symptom management, behavioral interventions, pain, fatigue, distress, acceptance and commitment therapy, meaning-centered therapy, self-compassion, home-based physical activity, mobile application, user testing, feasibility and acceptability
- MeSH terms
- Cancer Survivors, Adaptation, Psychological, Humans, Neoplasms, Survivors, Young Adult, Acceptance and Commitment Therapy
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