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ASN leads the fight to prevent, treat, and cure kidney diseases throughout the world by educating health professionals and scientists, advancing research and innovation, communicating new knowledge, and advocating for the highest quality care for patients.

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Kidney Week

Abstract: TH-PO861

Engaging Patients and Defining Outcomes: A Minority Engagement Effort

Session Information

Category: Genetic Diseases of the Kidneys

  • 1001 Genetic Diseases of the Kidneys: Cystic


  • Mustafa, Reem, University of Kansas, Kansas City, Kansas, United States
  • Husainat, Nedaa, University of Kansas, Kansas City, Kansas, United States
  • Kalot, Mohamad A., University of Kansas, Kansas City, Kansas, United States

Polycystic kidney disease (PKD) is an irreversible inherited disease that causes permanent worsening of kidney function. Despite being rare, PKD is the most common genetic cause of chronic kidney disease. The Establishing Meaningful Patient-centered Outcomes With Relevance for patients with Polycystic Kidney Disease (EMPOWER PKD) initiative aims to engage PKD stakeholders and patients to learn about health priorities, insurance issues, and patient engagement.


We utilized semi-structured focus groups. We developed and pre-piloted a guide that allowed for both conversational flow and consistency in questions among groups. We audio-recorded each group and transcribed the conversations verbatim. We performed an inductive thematic analysis. Two investigators completed all data coding independently and in duplicate. We compare the results of an ethnically diverse focus group to the other 7 that mainly included Caucasian participants.


14 individuals participated in this part of the study. Of these, (64.2%) reported having PKD, and (14.2%) being caregivers. The mean age of participants was 48.8 (range 29-75) years. The group included 85.75% African American and 7.1% reported more than one race. It was challenging to recruit this group and it required establishing relation with community nephrologists and faith-based organizations leads. Multiple participants stated that they would not have participated in the group was not exclusively ethnically diverse as they fear that their opinion may be outnumbered by a Caucasian majority. Some discussed believing that PKD was a “white” disease. Many discussed hiding their diagnosis which affected their activation and engagement and came with unanticipated psychological impacts. Several other themes emerged including fear of others finding out, isolation, lack of support, helplessness, the need to lie about their condition, and victimization. Participants unanimously described lack of trust-worthy easy to understand educational resources for minorities as a main barrier to engagement.


With a treatment now approved for use in the US, it is important to be aware of patients’ values and barriers to engagement which have pivotal effects on care. Additionally, it is essential to utilize resources to help activate patients of all racial and ethnic groups to be prepared for future treatments.


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