Journal of Cancer Survivorship

, Volume 5, Issue 4, pp 371–381

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
Original Paper

DOI: 10.1007/s11764-011-0199-1

Cite this article as:
Casillas, J., Syrjala, K.L., Ganz, P.A. et al. J Cancer Surviv (2011) 5: 371. doi:10.1007/s11764-011-0199-1

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.

Keywords

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

Copyright information

© Springer Science+Business Media, LLC 2011

Authors and Affiliations

  • 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
  1. 1.Department of Pediatrics, Division of Hematology/OncologyDavid Geffen School of Medicine at University of California, Los Angeles (UCLA)Los AngelesUSA
  2. 2.David Geffen School of Medicine at University of California, Los Angeles (UCLA)Los AngelesUSA
  3. 3.Division of Cancer Prevention and Control Research at the UCLA Jonsson Comprehensive Cancer CenterLos AngelesUSA
  4. 4.Biobehavioral Sciences Department, Fred Hutchinson Cancer Research CenterSeattleUSA
  5. 5.University of Colorado Cancer CenterDenverUSA
  6. 6.Connecticut Children’s Medical CenterHartfordUSA
  7. 7.Department of Biostatistics, School of Public HealthUniversity of CaliforniaLos AngelesUSA
  8. 8.Memorial Sloan-Kettering Cancer Center Survivorship ProgramNew YorkUSA
  9. 9.Abramson Cancer CenterUniversity of PennsylvaniaPhiladelphiaUSA
  10. 10.The Jonathan Jacques Cancer Center at Miller Children’s Hospital and the University of Southern California Keck School of MedicineLos AngelesUSA
  11. 11.Dana-Farber Cancer InstituteBostonUSA
  12. 12.University of North Carolina at Chapel Hill, Lineberger Comprehensive Cancer CenterChapel HillUSA
  13. 13.School of Social WorkUniversity of Texas at AustinAustinUSA
  14. 14.Vanderbilt-Ingram Cancer Center, Department of PediatricsVanderbilt University School of MedicineNashvilleUSA

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