Survivors' narratives of the value of cancer survivorship care plans and clinical services.

Abstract

57 Background: Providers in primary care practice can benefit from having a better understanding of cancer survivors’ perceptions of the value of survivorship treatment summaries and care plans. Our objective was to qualitatively explore survivors’ perceptions of care received in dedicated outpatient clinics for survivors of breast, genitourinary (GU), and head/neck cancers. Methods: This study was conducted from August 8, 2014 to October 2, 2014 in 3 clinics, selected on variation in infrastructure, patient populations, and disease site. A convenience sample of survivors scheduled for an appointment in these clinics was eligible. Semi-structured interviews were conducted by research staff trained in qualitative methodology. Demographic and clinical data were collected. Groups explored a) experience with care/services, b) value of care plan, service coordination and clinic operations and c) gaps/strengths in transition to clinics. Descriptive statistics were used to summarize and analyze demographic and clinical data. Discussions were transcribed verbatim with confirmation of themes among a team of researchers. Results: A total of 36 survivors, X= 62.3 (SD = 10.9) years, were interviewed. Of these 27.8% breast survivors, 38.9% head/neck, and 33.3% GU, with X= 8.33 (SD = 5.83) years since their cancer diagnosis. Of these, 80.5% were Caucasian, 8.3% Hispanic/Latino, and 5.6% Asian/Pacific Islander, and 5.6% African-American. 61.1% were male and 78.6% married or living with someone. Survivors cited concerns about inconsistency in methods used to distribute care plans to survivors, inadequate communication about the purpose of the care plan, and vague recall of receiving care plans. Survivors reported the value of receiving survivorship care were “having an awareness of what’s up the road, establishing a constant relationship with their provider and addressing gaps in care”. Conclusions: The value of offering survivorship care is supported by the narratives of these survivors. Additional training and education on effective communication about survivorship care plans may be useful to oncology specialists and primary care providers.