How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG™ Survivorship Center of Excellence Network
- Jacqueline Casillas,
- Karen L. Syrjala,
- Patricia A. Ganz,
- Emy Hammond,
- Alfred C. Marcus,
- Kerry M. Moss,
- Catherine M. Crespi,
- Peiyun Lu,
- Mary S. McCabe,
- Jennifer S. Ford,
- Linda A. Jacobs,
- Donna Pucci,
- Steven C. Palmer,
- Amanda M. Termuhlen,
- Lisa Diller,
- Marci Campbell,
- Barbara Jones,
- Debra L. Friedman
- … show all 18 hide
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This study examined the association between sociodemographic, cancer treatment, and care delivery factors on young adult cancer survivors’ confidence in managing their survivorship care.
Survivors aged 18–39 years (n = 376) recruited from the LIVESTRONG™ Survivorship Center of Excellence Network sites completed a survey assessing self-reported receipt of survivorship care planning, expectations of their providers, and confidence in managing their survivorship care. Multivariate logistic regression identified characteristics of those reporting low confidence in managing their survivorship care.
Mean age was 28 years; mean interval from diagnosis was 9 ± 8 years. Seventy-one percent reported currently attending an oncology survivorship clinic. Regarding survivorship care planning, 33% did not have copies of their cancer-related medical records, 48% did not have a treatment summary, and 55% had not received a survivorship care plan. Seventy percent identified the oncologist as the most important health care provider for decisions regarding test and treatment decisions while 10% reported using a “shared-care model” involving both primary care providers and oncologists. Forty-one percent were classified as having low confidence in managing survivorship care. In multivariate analysis, low confidence was associated with non-white ethnicity and lack of a survivorship care plan (both p < 0.05).
Findings suggest that provision of survivorship care plans for young adult cancer survivors can be used to improve confidence in managing survivorship care, particularly for ethnic minorities.
Implications for cancer survivors
Survivors should consider advocating for receipt of a survivorship care plan as it may facilitate confidence as a consumer of survivorship care.
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- How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG™ Survivorship Center of Excellence Network
Journal of Cancer Survivorship
Volume 5, Issue 4 , pp 371-381
- Cover Date
- Print ISSN
- Online ISSN
- Springer US
- Additional Links
- Young adult
- Cancer survivors
- Delivery of health care
- Survivorship care plan
- Industry Sectors
- Jacqueline Casillas (1) (3)
- Karen L. Syrjala (4)
- Patricia A. Ganz (2) (3)
- Emy Hammond (4)
- Alfred C. Marcus (5)
- Kerry M. Moss (6)
- Catherine M. Crespi (3) (7)
- Peiyun Lu (2)
- Mary S. McCabe (8)
- Jennifer S. Ford (8)
- Linda A. Jacobs (9)
- Donna Pucci (9)
- Steven C. Palmer (9)
- Amanda M. Termuhlen (10)
- Lisa Diller (11)
- Marci Campbell (12)
- Barbara Jones (13)
- Debra L. Friedman (14)
- Author Affiliations
- 1. Department of Pediatrics, Division of Hematology/Oncology, David Geffen School of Medicine at University of California, Los Angeles (UCLA), 10833 Le Conte Ave. Room A2-410 MDCC, Los Angeles, CA, 90095, USA
- 3. Division of Cancer Prevention and Control Research at the UCLA Jonsson Comprehensive Cancer Center, Los Angeles, CA, USA
- 4. Biobehavioral Sciences Department, Fred Hutchinson Cancer Research Center, Seattle, WA, USA
- 2. David Geffen School of Medicine at University of California, Los Angeles (UCLA), Los Angeles, CA, USA
- 5. University of Colorado Cancer Center, Denver, CO, USA
- 6. Connecticut Children’s Medical Center, Hartford, CT, USA
- 7. Department of Biostatistics, School of Public Health, University of California, Los Angeles, CA, USA
- 8. Memorial Sloan-Kettering Cancer Center Survivorship Program, New York, NY, USA
- 9. Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA
- 10. The Jonathan Jacques Cancer Center at Miller Children’s Hospital and the University of Southern California Keck School of Medicine, Los Angeles, CA, USA
- 11. Dana-Farber Cancer Institute, Boston, MA, USA
- 12. University of North Carolina at Chapel Hill, Lineberger Comprehensive Cancer Center, Chapel Hill, NC, USA
- 13. School of Social Work, University of Texas at Austin, Austin, TX, USA
- 14. Vanderbilt-Ingram Cancer Center, Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, TN, USA