Optimizing cancer survivorship in primary care: patient experiences from the Johns Hopkins Primary Care for Cancer Survivors clinic

Abstract

Purpose The optimal delivery of survivorship care, particularly within primary care, remains poorly understood. We established the Johns Hopkins Primary Care for Cancer Survivors (PCCS) clinic in 2015 to address care challenges unique to cancer survivors. To better understand the care from the PCCS clinic, we interviewed patients about their perception of care delivery, survivorship care, and care coordination. Methods We conducted semi-structured interviews with adult survivors of any cancer type seen in the PCCS clinic. A priori and in vivo coding of verbatim transcripts was part of the thematic analysis. Results Seventeen cancer survivors were interviewed (ages 37–78). Themes that emerged were (1) optimal care and (2) the PCCS experience. Subthemes respectively included the ideal role of the primary care provider (1), telehealth/COVID-19 challenges and opportunities (1), patient-derived value from the PCCS clinic (2), and improving the PCCS model (2). Overall, PCCS patients expected and experienced high-quality, comprehensive primary care by providers with cancer survivorship expertise. Patients reported telehealth benefits and challenges for survivorship care during the COVID-19 pandemic. Conclusions PCCS patients perceived receiving high-quality primary care and valued being seen in a primary care–based survivorship clinic. The PCCS clinic can serve as a model of primary care–based cancer survivorship. Implications for Cancer Survivors Ideal primary care provider roles and care coordination are important factors for high-quality survivorship care and can be provided by a specialized cancer survivorship clinic in primary care. Supplementary Information The online version contains supplementary material available at 10.1007/s11764-022-01166-3.

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“…However, these are not insurmountable challenges, and numerous successful examples can be identified to encourage these changes in clinical practice. [4][5][6] Yet, regardless of the preferred approach to developing a survivorship program, the workflows, the EHR automation, having dedicated financial commitment from the institution is foundational to having a sustainable survivorship program. A business model and sustainability plan will look different for each organization; however, standard elements should be considered along with a plan for a return on investment metrics.…”

“…We also recognize the existing limitations and challenges of implementing these changes in our disparate health care delivery systems and clinical practices. However, these are not insurmountable challenges, and numerous successful examples can be identified to encourage these changes in clinical practice . Yet, regardless of the preferred approach to developing a survivorship program, the workflows, the EHR automation, having dedicated financial commitment from the institution is foundational to having a sustainable survivorship program.…”