Qualitative Analysis Reveals Insights to Meet the Needs of Patients with C3 Glomerulopathy (C3G)
- Glomerular Diseases: Epidemiology and Case Reports
November 02, 2023 | Location: Exhibit Hall, Pennsylvania Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- 1402 Glomerular Diseases: Clinical, Outcomes, and Trials
- Woolley, Ryan, American Kidney Fund, Rockville, Maryland, United States
- Olebara, Stephanie C., American Kidney Fund, Rockville, Maryland, United States
- Paris, Melanie, American Kidney Fund, Rockville, Maryland, United States
- Spigler, Michael, American Kidney Fund, Rockville, Maryland, United States
C3 glomerulopathy (C3G), a rare condition characterized by abnormal regulation of the alternative complement pathway, results in kidney function impairment that can progress to end-stage renal disease. Published evidence of the patient experience in managing this rare condition is scarce. Therefore, the American Kidney Fund (AKF) sought to gain insight into the unique needs and challenges of people affected by C3G by convening a focus group of patients and caregivers.
Through convenience sampling via a C3G social media page, 8 participants were recruited for a virtual, 60-minute focus group. Six participants were adults diagnosed with C3G and two were caregivers of children with C3G. The focus group was recorded and transcribed, then analyzed for key themes using thematic analyses.
Findings revealed 3 overarching themes: limited C3G awareness among health care providers, a lack of patient-friendly C3G education material, and a need to stay connected to the community. Participants faced challenges identifying health care providers knowledgeable about C3G and with experience treating patients with C3G leading several to travel far for their care. Many also discussed their struggle with finding accessible educational information and having to navigate complex scientific literature to learn more about their condition and treatment options. Social support needs were also identified including connecting with others with this rare condition and seeing progress being made with advancements in treatments and ongoing trials.
C3G educational resources written in plain language, especially targeted at newly-diagnosed patients, are needed. Additionally, increased HCP education and better avenues for identifying HCPs well-versed in C3G will help patients feel more confident in their care and management plans. Lastly, finding avenues to connect patients and share insights from clinical trials and ongoing advancements will help to relieve the emotional burden felt by patients and caregivers. As part of this effort, AKF is developing a C3G education campaign centered around tackling these barriers. Gathering patient input is imperative to ensure educational resources are meaningfully tailored to patient needs and values to improve health outcomes.
- Commercial Support – Novartis Pharmaceuticals