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

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Abstract

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.

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References

  1. Miller KD, Siegel RL, Lin CC, Mariotto AB, Kramer JL, Rowland JH, Stein KD, Alteri R, Jemal A (2016) Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin 66(4):271–289

    Article  Google Scholar 

  2. Institute of Medicine and National Research Council (2005) From cancer patient to cancer survivor: lost in transition. National Academies Press, Washington, DC

    Google Scholar 

  3. Cohen HJ (2009) A model for the shared care of elderly patients with cancer. J Am Geriatr Soc 57(Suppl 2):S300–S302

    Article  PubMed  Google Scholar 

  4. Schutze H, Chin M, Weller D, Harris MF (2017) Patient, general practitioner and oncologist views regarding long-term cancer shared care. Fam Pract. https://doi.org/10.1093/fampra/cmx105

  5. Gorin SS, Haggstrom D, Han PKJ, Fairfield KM, Krebs P, Clauser SB (2017) Cancer care coordination: a systematic review and meta-analysis of over 30 years of empirical studies. Ann Behav Med 51(4):532–546

    Article  PubMed  Google Scholar 

  6. Viswanathan M, Halpern M, Swinson Evans T, Birken SA, Mayer DK, Basch E (2014) AHRQ comparative effectiveness technical briefs. In: Models of Cancer Survivorship Care. Agency for Healthcare Research and Quality, Rockville, p 2014

  7. Campbell BH, Massey BL, Myers KB (2012) Survivorship care plans for patients with head and neck cancer. Arch Otolaryngol Head Neck Surg 138(12):1116–1119

    Article  PubMed  Google Scholar 

  8. Shulman LN, Ferris L, Takanishi DM, McKellar D (2015) Treatment summaries and survivorship care plans: the approach by the commission on cancer to increase use. J Oncol Pract 11(1):40–41

    Article  PubMed  Google Scholar 

  9. Boekhout AH, Maunsell E, Pond GR, Julian JA, Coyle D, Levine MN, Grunfeld E (2015) A survivorship care plan for breast cancer survivors: extended results of a randomized clinical trial. J Cancer Surviv 9(4):683–691

    Article  PubMed  Google Scholar 

  10. Brothers BM, Easley A, Salani R, Andersen BL (2013) Do survivorship care plans impact patients’ evaluations of care? A randomized evaluation with gynecologic oncology patients. Gynecol Oncol 129(3):554–558

    Article  PubMed  PubMed Central  Google Scholar 

  11. Grunfeld E, Julian JA, Pond G, Maunsell E, Coyle D, Folkes A, Joy AA, Provencher L, Rayson D, Rheaume DE, Porter GA, Paszat LF, Pritchard KI, Robidoux A, Smith S, Sussman J, Dent S, Sisler J, Wiernikowski J, Levine MN (2011) Evaluating survivorship care plans: results of a randomized, clinical trial of patients with breast cancer. J Clin Oncol 29(36):4755–4762

    Article  Google Scholar 

  12. Hershman DL, Greenlee H, Awad D, Kalinsky K, Maurer M, Kranwinkel G, Brafman L, Jayasena R, Tsai WY, Neugut AI, Crew KD (2013) Randomized controlled trial of a clinic-based survivorship intervention following adjuvant therapy in breast cancer survivors. Breast Cancer Res Treat 138(3):795–806

    Article  CAS  PubMed  Google Scholar 

  13. Jeppesen MM, Ezendam NPM, Pijnenborg JMA, Caroline Vos M, Boll D, Kruitwagen R, Jensen PT, van de Poll-Franse LV (2018) The impact of the survivorship care plan on health care use: 2-year follow-up results of the ROGY care trial. J Cancer Surviv 12(1):18–27

    Article  PubMed  Google Scholar 

  14. Mayer DK, Birken SA, Check DK, Chen RC (2015) Summing it up: an integrative review of studies of cancer survivorship care plans (2006–2013). Cancer 121(7):978–996

    Article  PubMed  Google Scholar 

  15. Mitchell SA, Chambers DA (2017) Leveraging implementation science to improve cancer care delivery and patient outcomes. J Oncol Pract 13(8):523–529

    Article  PubMed  PubMed Central  Google Scholar 

  16. Selove R, Birken SA, Skolarus TA, Hahn EE, Sales A, Proctor EK (2016) Using implementation science to examine the impact of cancer survivorship care plans. J Clin Oncol 34:3834–3837

    Article  PubMed  PubMed Central  Google Scholar 

  17. Proctor E, Silmere H, Raghavan R, Hovmand P, Aarons G, Bunger A, Griffey R, Hensley M (2011) Outcomes for implementation research: conceptual distinctions, measurement challenges, and research agenda. Admin Pol Ment Health 38(2):65–76

    Article  Google Scholar 

  18. Hsieh HF, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Health Res 15(9):1277–1288

    Article  PubMed  Google Scholar 

  19. Zafar SY, Abernethy AP (2013) Financial toxicity, Part I: a new name for a growing problem. Oncology (Williston Park) 27(2):80–81, 149

    Google Scholar 

  20. Berkowitz C, Allen DH, Tenhover J, Zullig LL, Ragsdale J 3rd, Fischer JE, Pollak KI, Koontz BF (2017) Knowledge and preferences of primary care providers in delivering head and neck cancer survivorship care. J Cancer Educ. https://doi.org/10.1007/s13187-017-1250-3

  21. Salz T, Baxi S (2016) Moving survivorship care plans forward: focus on care coordination. Cancer Med 5(7):1717–1722

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Disclaimers

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

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).

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Authors and Affiliations

  1. Center for Health Services Research in Primary Care, Durham Veterans Affairs Health Care Center, Durham, NC, 27705, USA

    Leah L. Zullig & Hayden B. Bosworth

  2. Department of Population Health Sciences, Duke University Medical Center, Durham, NC, 27710, USA

    Leah L. Zullig, Julie J. Miller & Hayden B. Bosworth

  3. Duke Cancer Institute, Duke University Medical Center, Durham, NC, 27710, USA

    Leah L. Zullig, Bridget F. Koontz, S. Yousuf Zafar, D. Hutch Allen, Jennifer A. Tenhover & Hayden B. Bosworth

  4. Geriatric Research Education and Clinical Center, Durham Veterans Affairs Health Care Center, Durham, NC, 27705, USA

    Katherine Ramos

  5. Duke University School of Medicine, Durham, NC, 27705, USA

    Callie Berkowitz

  6. Division of General Internal Medicine, Duke University Medical Center, Durham, NC, 27710, USA

    Rowena J. Dolor

  7. Department of Radiation Oncology, Duke University Medical Center, Durham, NC, 27710, USA

    Bridget F. Koontz

  8. Department of Medical Oncology, Duke University Medical Center, Durham, NC, 27710, USA

    S. Yousuf Zafar

  9. School of Nursing, Duke University Medical Center, Durham, NC, 27710, USA

    Hayden B. Bosworth

  10. Department of Psychiatry and Behavioral Sciences, Duke University, Durham, NC, 27710, USA

    Hayden B. Bosworth

Authors
  1. Leah L. Zullig
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  2. Katherine Ramos
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  3. Callie Berkowitz
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  4. Julie J. Miller
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  5. Rowena J. Dolor
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  6. Bridget F. Koontz
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  7. S. Yousuf Zafar
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  8. D. Hutch Allen
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  9. Jennifer A. Tenhover
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  10. Hayden B. Bosworth
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Corresponding author

Correspondence to Leah L. Zullig.

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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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Zullig, L.L., Ramos, K., Berkowitz, C. et al. Assessing Key Stakeholders’ Knowledge, Needs, and Preferences for Head and Neck Cancer Survivorship Care Plans. J Canc Educ 34, 584–591 (2019). https://doi.org/10.1007/s13187-018-1345-5

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  • DOI: https://doi.org/10.1007/s13187-018-1345-5

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