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

Research output: Contribution to journalArticlepeer-review

47 Scopus citations

Abstract

Introduction: This study examined the association between sociodemographic, cancer treatment, and care delivery factors on young adult cancer survivors' confidence in managing their survivorship care. Methods: 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. Results: 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). Discussion/conclusions: 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.

Original languageEnglish (US)
Pages (from-to)371-381
Number of pages11
JournalJournal of Cancer Survivorship
Volume5
Issue number4
DOIs
StatePublished - Dec 2011
Externally publishedYes

Bibliographical note

Funding Information:
Acknowledgments/support This work was supported by grants from the Lance Armstrong Foundation for the COE Network, the Jonsson Comprehensive Cancer Center Foundation’s STOP Cancer Research Career Development Award, and American Society for Clinical Oncology’s Career Development Award. C. Crespi was supported by NIH CA 16042. K. Syrjala was also supported by NIH grant CA112631.

Keywords

  • Cancer survivors
  • Delivery of health care
  • Neoplasm
  • Survivorship care plan
  • Young adult

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