Perspectives of medication-related experiences in Black persons with kidney diseases: The patient voice.

Abstract

Purpose: Black persons comprise 13.4% of the US population but represent 36% of those with kidney failure. Medication-related disparities likely contribute to these outcomes. Patient perspective provides valuable insight into what they need and want from their medications and their care.

Methods: We conducted five 1.25-hour online focus group sessions via a videoconferencing app between March 30 and June 27, 2022. Our nationally recruited sample consisted of 19 adults 37 to 72 years of age who represented a broad range of educational backgrounds, all with CKD (non-dialysis-dependent, dialysis-dependent, or post kidney transplant). Semistructured guides were constructed by our team and used by moderators. Inductive thematic analysis procedures were followed. Patients representative of our study population were integral members of our research team.

Results: Our analysis includes 3 major themes and associated subthemes: (1) meet patients where they are (subthemes: patient autonomy and empowerment, experience with illness, home and community support, barriers to understanding, and barriers to access; (2) the patient journey with medications (subthemes: fears with medications, frustrations and burdens with medication use, adjusting to medications, desire for awareness and explanation, preferences with medications, and helpful tools and supports; and (3) significant interactions with healthcare professionals (subthemes: barriers to building trust, type of care and interactions desired, and care team communication).

Conclusion: Recognizing the patient as an individual, addressing their frustrations and needs with medications, and attending to implicit biases and strategies to overcome barriers and empower Black persons with CKD are anticipated to reduce medication- related disparities and improve health outcomes experienced by this population.