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.
Subject(s)
Cancer Survivors , Patient Care Planning , Attitude of Health Personnel , Communication , Documentation , Female , Head and Neck Neoplasms , Humans , Interviews as Topic , Male , Middle Aged , Nurse Practitioners , Physicians, Primary Care , Professional RoleABSTRACT
BACKGROUND: Head and neck cancer (HNC) survivors experience significant sequelae of treatment, including long-term physical side effects and ongoing cancer surveillance. OBJECTIVES: The aim of this study is to understand patients' survivorship knowledge gaps and supportive care needs. METHODS: Through an anonymous cross-sectional survey, the authors evaluated 41 HNC survivors' knowledge regarding post-treatment issues. FINDINGS: Patients had undergone a variety of treatment modalities.
Subject(s)
Cancer Survivors/psychology , Caregivers/psychology , Head and Neck Neoplasms/nursing , Head and Neck Neoplasms/psychology , Oncology Nursing/standards , Quality of Life/psychology , Survivorship , Adaptation, Psychological , Adult , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Patient Care Planning , Practice Guidelines as Topic , Stress, Psychological/nursing , Young AdultABSTRACT
Long-term care for head and neck cancer (HNC) survivors is complex and requires coordination among multiple providers. Clinical practice guidelines highlight the role of primary care providers (PCPs) in screening for secondary cancer/recurrence, assessment of late/long-term side effects, and referrals for appropriate specialty management of toxicity. However, these responsibilities may be difficult to meet within the scope of primary care practice. We conducted this study to explore preferences, comfort, and knowledge of PCPs in the care of HNC survivors. We piloted a 40-item web-based survey developed with oncologist and PCP input targeted for family medicine and internal medicine providers. Responses were collected within a single university health system over 2 months. PCPs (n = 28; RR = 11.3%) were interested in learning about health promotion after cancer treatment (89%) and generally agree that their current practice patterns address healthy lifestyle behaviors (82%). However, only 32% of PCPs felt confident they could manage late/long-term side effects of chemotherapy, radiation, or surgery. Only 29% felt confident they could provide appropriate cancer screening. Looking at shared care responsibilities with oncology providers, PCPs perceived being responsible for 30% of care in the first year after treatment and 81% of care after 5 years. Seventy-one percent of PCPs agreed that oncologists provided them necessary information, yet 32% of PCPs found it difficult to coordinate with cancer providers. While these PCPs perceive increased care responsibility for long-term survivors, most are uncomfortable screening for recurrence and managing late/long-term side effects. Education and mutual coordination between PCPs and oncology providers may improve survivor care.
