Assessing Key Stakeholders’ Knowledge, Needs, and Preferences for Head and Neck Cancer Survivorship Care Plans

  • Leah L. Zullig
  • Katherine Ramos
  • Callie Berkowitz
  • Julie J. Miller
  • Rowena J. Dolor
  • Bridget F. Koontz
  • S. Yousuf Zafar
  • D. Hutch Allen
  • Jennifer A. Tenhover
  • Hayden B. Bosworth


Cancer survivorship care plans (SCPs) are endorsed to support quality care for cancer survivors, but uptake is slow. We assessed knowledge, needs, and preferences for SCP content and delivery from a wide variety of stakeholders. We focused SCP content for head and neck cancer as it is a disease prone to long-term side effects requiring management from multiple providers. We conducted telephone-based, qualitative interviews. We purposively sampled head and neck cancer survivors (n = 4), primary care physicians in the community (n = 5), and providers affiliated with a large academic medical center (n = 5) who treat head and neck cancer, cancer specialists (n = 6), and nurse practitioners/supportive care staff (n = 5). Interviews were recorded, transcribed, and analyzed using direct content analysis. Few participants reported personal experience with SCPs, but most supported the concept. Several key themes emerged: (1) perceived ambiguity regarding roles and responsibilities for SCPs, (2) a need to tailor the content and language based on the intended recipient, (3) documentation process should be as automated and streamlined as possible, (4) concerns about using the SCP to coordinate with outside providers, and (5) that SCPs would have added value as a “living document.” We also report SCP-related issues that are unique to serving patients diagnosed with head and neck cancer. Effort is needed to tailor SCPs for different recipients and optimize their potential for successful implementation, impact on care outcomes, and sustainability. Many cancer survivors may not receive a SCP as part of routine care. Survivors could engage their health care team by requesting a SCP.


Cancer survivors Care coordination Qualitative Head and neck neoplasms Survivorship care plan Care quality 



The views expressed in this article are those of the authors and do not necessarily represent the views of Duke University Medical Center or the US Department of Veterans Affairs.

Funding information

This study was supported with pilot funding from the Cancer Control and Population Sciences group at the Duke Cancer Institute. Dr. Zullig is supported by a VA Health Services Research and Development (HSR&D) Career Development Award (CDA 13-025). Dr. Bosworth is supported by a VA Research Career Scientist Award (RCS 08-027).

Compliance with Ethical Standards

Conflict of Interest

Dr. Zullig has received a speaker honorarium from Novartis, which was unrelated to the current work. Dr. Koontz receives research funding from Janssen Pharmaceuticals and has been on advisory boards for Blue Earth Diagnostics and Bayer Pharmaceuticals, none of which is related to the presented work. All other authors report no conflicts of interest.

Research Involving Human Participants

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.


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Copyright information

© This is a U.S. government work and its text is not subject to copyright protection in the United States; however, its text may be subject to foreign copyright protection 2018

Authors and Affiliations

  • Leah L. Zullig
    • 1
    • 2
    • 3
  • Katherine Ramos
    • 4
  • Callie Berkowitz
    • 5
  • Julie J. Miller
    • 2
  • Rowena J. Dolor
    • 6
  • Bridget F. Koontz
    • 3
    • 7
  • S. Yousuf Zafar
    • 3
    • 8
  • D. Hutch Allen
    • 3
  • Jennifer A. Tenhover
    • 3
  • Hayden B. Bosworth
    • 1
    • 2
    • 3
    • 9
    • 10
  1. 1.Center for Health Services Research in Primary CareDurham Veterans Affairs Health Care CenterDurhamUSA
  2. 2.Department of Population Health SciencesDuke University Medical CenterDurhamUSA
  3. 3.Duke Cancer InstituteDuke University Medical CenterDurhamUSA
  4. 4.Geriatric Research Education and Clinical CenterDurham Veterans Affairs Health Care CenterDurhamUSA
  5. 5.Duke University School of MedicineDurhamUSA
  6. 6.Division of General Internal MedicineDuke University Medical CenterDurhamUSA
  7. 7.Department of Radiation OncologyDuke University Medical CenterDurhamUSA
  8. 8.Department of Medical OncologyDuke University Medical CenterDurhamUSA
  9. 9.School of NursingDuke University Medical CenterDurhamUSA
  10. 10.Department of Psychiatry and Behavioral SciencesDuke UniversityDurhamUSA

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