"It's Something I didn't Know": Experiences of Research Participation in an Integrated Kidney Palliative Care (KPC) Intervention at a Safety Net Hospital

Background: Patients seen at safety net hospitals are underrepresented in research and often have high disease burden, highlighting a need for research in these settings. We explored experiences of patients at a safety net hospital participating in a KPC randomized controlled trial (RCT) to inform future research. Methods: In this qualitative descriptive study, we conducted semi-structured interviews in English or Spanish with purposively sampled participants with chronic kidney disease (CKD) from a pilot RCT testing an ambulatory KPC intervention integrated with CKD care as compared to usual CKD care at an urban safety net hospital. Interviews explored motivation for and experience with trial participation, and demographic/clinical data were collected. We analyzed data using conventional content analysis and descriptive statistics. Results: Among all RCT participants (n=84), 59 (71%) consented to interviews, and 24 (41%) completed them. Mean age was 61 (range 37-81). Participants were 58% male, 50% Hispanic, 38% Black, and 21% White. 33% were on dialysis, while the remainder had CKD stage IV or V. 4% were uninsured, and 54% were on Medicaid. 30% did not graduate high school. Spanish-speaking participants often asked family members to be involved in participation decisions. Motivators of RCT participation were to be “part of something,” to help others, and to obtain CKD education. The trial experience was positively perceived due to receipt of CKD and KPC education and holistic support, particularly given a lack of prior palliative care knowledge. Data collection was seen as enjoyable versus burdensome, yet many had not previously participated in research. Conclusion: Participants at a safety net hospital were interested in and benefitted from RCT participation. A key motivator for participation was altruism. Participants appreciated that both physical and emotional issues were addressed during data collection and in the intervention. They valued research team members listening to them and involving family members in enrollment decisions at their request. Safety net settings offer the benefits of receptive participants and the opportunity to improve equity in CKD research. Funding: NIDDK Support