Perspectives of Lymphoma Survivors and Oncology Care Providers on Survivorship Care: A Qualitative Study

PURPOSE To explore lymphoma survivors' care experiences and needs post-treatment and to determine optimal information and services for a lymphoma survivorship program from the perspectives of both survivors and oncologists.METHODS We conducted in-depth semi-structured interviews with 32 lymphoma survivors and 13 lymphoma oncology providers. Interviews were analyzed using a template organizing style and iterative immersion/crystallization analysis of retrieved coded segments. Our thematic analysis focused on identifying commonalities and variations of themes related to lymphoma survivors' post-treatment needs, transition from oncology to primary care, and survivors' and providers' recommendations for improving survivorship care for patients with lymphoma.RESULTS Three main themes emerged. (1) A predominant unmet need was how to manage the profound fear of recurrence and anxiety post-treatment. Survivors desired more information about signs and symptoms of recurrence and reassurance from their cancer team. (2) There were diverse views regarding the importance of transition from oncologist to primary care providers. Some survivors and oncologists did not value the importance of transitioning to primary care, whereas others recognized the need for primary care but found difficulty with accessing primary care. (3) Psychosocial support, wellness services, and assistance with financial and employment programs are needed for an ideal survivorship program.CONCLUSION This study provides critical insights into optimal survivorship care for patients with lymphoma. Further research is needed to better understand cost-effective models of care for this unique and complex population of lymphoma survivors.