Development of a prostate cancer survivorship care toolkit for Black men with clinical and contextual tailoring

Black men experience the highest prostate cancer (CaP) burden among all racial and ethnic groups, underscoring the urgent need for research to guide the development and implementation of culturally tailored strategies aimed at reducing disparities and improving health outcomes. Survivorship care resources are recommended to educate patients and provide them with better information about their cancer diagnosis, treatment, and follow-up care, thereby empowering them to be active participants in their own survivorship care for improved quality of life and well-being. Due to the lack of culturally relevant survivorship care, we aimed to develop a survivorship care toolkit (SCT) that includes a survivorship care roadmap template tailored to Black men to address the unique survivorship care needs of Black prostate cancer survivors (CaPS). Our approach is grounded in the science of survivorship and rooted in the science of community engagement, which requires a genuine, bidirectional relationship between scientists and survivor-advocates.

Following literature and guideline review of the American Society of Clinical Oncology (ASCO) survivorship care template, we employed a three-pronged method to develop the toolkit that included a literature review, a consensus-building approach with diverse stakeholders, and in-depth interviews with Black prostate cancer survivors (CaPS).

Following community-engaged research, we included 22 diverse Black CaPS to review and tailor the SCT. Results supported the enhancement of the ASCO template by incorporating and expanding domains including family history, care team contacts, follow-up and surveillance, symptom management, quality of life, survivor-specific concerns, major comorbidities, health advisories, and culturally relevant resources.

Black CaPS expressed satisfaction with the tailored SCT as a tool and a credible, clinically, and community-responsive resource to improve follow-up and survivorship care, patient documentation, activation, and communication about their survivorship concerns and needs.