The hidden costs: a qualitative analysis exploring the experience of prostate cancer treatment-related side effects on sexual function and urinary incontinence among Black survivors and their caregivers

Prostate cancer (PCa) disproportionately affects Black men in the U.S., leading to high incidence and mortality rates. Post-treatment challenges, such as sexual dysfunction and urinary incontinence, significantly impact quality of life yet are frequently overlooked. The purpose of this study was to characterize the experience of treatment-related side effects around sexual function and urinary incontinence among Black survivors of PCa and their caregivers.

We conducted semi-structured virtual interviews with 11 Black survivors of PCa and 11 caregivers (22 total participants). Survivors were eligible if they were diagnosed and treated for PCa within the last decade and caregivers were eligible if they self-identified as a caregiver for a Black survivor. Interviews were transcribed verbatim and analyzed using a qualitative descriptive approach.

During interviews, participants spontaneously discussed topics covering sexual dysfunction and urinary incontinence. Key themes identified from interview discussions included the physical experience of PCa treatment, knowledge of the impact of PCa treatment on life quality, and the process of navigating survivorship care. Although they received peer and familial support, survivors expressed a desire for clinicians to initiate discussions on sexual dysfunction and urinary incontinence. Caregivers recounted their experiences while providing support to the survivor.

The findings underscore the need for clinicians to prioritize discussions on sexual dysfunction and urinary incontinence with patients, and for enhancement of care pathways and resources for these issues in survivorship care.

Trained professionals, such as occupational and physical therapists, social workers, genetic counselors, and psychologists, have the potential to fill this survivorship care gap.