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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

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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.

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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.

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Authors and 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

    Jacqueline Casillas

  2. David Geffen School of Medicine at University of California, Los Angeles (UCLA), Los Angeles, CA, USA

    Patricia A. Ganz & Peiyun Lu

  3. Division of Cancer Prevention and Control Research at the UCLA Jonsson Comprehensive Cancer Center, Los Angeles, CA, USA

    Jacqueline Casillas, Patricia A. Ganz & Catherine M. Crespi

  4. Biobehavioral Sciences Department, Fred Hutchinson Cancer Research Center, Seattle, WA, USA

    Karen L. Syrjala & Emy Hammond

  5. University of Colorado Cancer Center, Denver, CO, USA

    Alfred C. Marcus

  6. Connecticut Children’s Medical Center, Hartford, CT, USA

    Kerry M. Moss

  7. Department of Biostatistics, School of Public Health, University of California, Los Angeles, CA, USA

    Catherine M. Crespi

  8. Memorial Sloan-Kettering Cancer Center Survivorship Program, New York, NY, USA

    Mary S. McCabe & Jennifer S. Ford

  9. Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA

    Linda A. Jacobs, Donna Pucci & Steven C. Palmer

  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

    Amanda M. Termuhlen

  11. Dana-Farber Cancer Institute, Boston, MA, USA

    Lisa Diller

  12. University of North Carolina at Chapel Hill, Lineberger Comprehensive Cancer Center, Chapel Hill, NC, USA

    Marci Campbell

  13. School of Social Work, University of Texas at Austin, Austin, TX, USA

    Barbara Jones

  14. Vanderbilt-Ingram Cancer Center, Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, TN, USA

    Debra L. Friedman

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  1. Jacqueline Casillas
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  2. Karen L. Syrjala
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  3. Patricia A. Ganz
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  16. Marci Campbell
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  18. Debra L. Friedman
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Corresponding author

Correspondence to Jacqueline Casillas.

Additional information

Prior presentations

Poster presentation at the Biennial Cancer Survivorship Research Conference: Recovery and Beyond, June 2010.

Workshop presentation at the National Latino Cancer Summit, “Cancer Survivorship,” San Francisco, CA, July 2010.

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Casillas, J., Syrjala, K.L., Ganz, P.A. et al. How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG™ Survivorship Center of Excellence Network. J Cancer Surviv 5, 371–381 (2011). https://doi.org/10.1007/s11764-011-0199-1

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