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

J Cancer Educ. 2019 Jun;34(3):584-591. doi: 10.1007/s13187-018-1345-5.

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.

Keywords: Cancer survivors; Care coordination; Care quality; Head and neck neoplasms; Qualitative; Survivorship care plan.

Publication types

  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Attitude of Health Personnel
  • Cancer Survivors*
  • Communication
  • Documentation
  • Female
  • Head and Neck Neoplasms
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Nurse Practitioners
  • Patient Care Planning*
  • Physicians, Primary Care
  • Professional Role