Associate Professor Crystal Lumpkins Contributes to Groundbreaking Research on Patient Priorities in Polycystic Kidney Disease

Associate Professor Crystal Lumpkins recently collaborated with a multidisciplinary research team on a newly published article in Kidney360, titled “Establishing Meaningful Patient-Centered Outcomes with Relevance for Patients with Polycystic Kidney Disease: Patient, Caregiver, and Researcher Priorities for Research in Polycystic Kidney Disease.”

This significant study sheds light on what truly matters to individuals living with Polycystic Kidney Disease (PKD), emphasizing the need to align future research with the lived experiences and concerns of patients and their caregivers. Dr. Lumpkins provided valuable contributions to this work, helping further critical conversations around patient engagement and the importance of community-informed research.

The project brought together nearly 100 stakeholders—including patients, caregivers, clinicians, and researchers—across nine in-depth focus groups. Participants discussed their experiences with PKD and identified what they believe should be prioritized in future studies. One of the most compelling findings is that patients were far more concerned about the ongoing impact of PKD on their daily health and wellbeing than about mortality. Psychological effects, in particular, emerged as a dominant theme, with participants describing emotional strain as one of the most challenging aspects of managing the disease.

The research also highlighted the importance of addressing comorbidities, navigating lifestyle changes, and making healthcare decisions in the context of limited information and complex testing protocols. Many participants emphasized that the emotional and mental health toll of PKD often goes unrecognized in clinical settings, a gap this research aims to address.

By identifying patient-important outcomes and prioritizing their perspectives, this study encourages a more empathetic, practical, and responsive approach to PKD research. It also reinforces the value of stakeholder engagement in creating a truly patient-centered research agenda.

To explore the full article and learn more about these insights, click the link below:
Establishing Meaningful Patient-Centered Outcomes with Relevance for Patients with Polycystic Kidney Disease