Lived Experiences of Patients and Care Providers in Focal Segmental Glomerular Sclerosis and IgA Nephropathy

Focal segmental glomerulosclerosis (FSGS) and IgA nephropathy (IgAN) are progressive kidney conditions associated with substantial clinical burden. However, limited research has explored the lived experiences of individuals affected by these conditions. The DEFINE study aimed to address this gap by examining the day-to-day impacts of FSGS and IgAN on personal and professional lives, emotional well-being, time, and finances.

DEFINE was a multi-country qualitative study involving adults with primary FSGS or IgAN, and adult care providers of adults or children with these conditions. Participants were recruited from Germany, Spain, the UK, and the USA. All were invited to complete a pre-task survey and to join virtual focus groups. Thematic analysis was conducted to identify key themes and insights.

Thirty-two participants completed the pre-task survey and 26 attended the focus groups. Fatigue was the most burdensome symptom, affecting daily activities, social life, and employment, yet was often overlooked in clinical care. Dietary restrictions and reduced physical activity further limited quality of life, compounded by inconsistent guidance. Emotional impacts, such as sadness and anxiety, were commonly reported, driven by the condition's effect on daily life and fear of disease progression. Many patients reported reduced work hours or ceased employment due to symptoms or condition management. Care providers also made professional adjustments, although some reported greater workplace flexibility. Financial strain was reported across all regions, including medical costs, dietary expenses, medical-related travel, and lost income. Participants highlighted the value of peer support, self-advocacy, and access to specialist healthcare professionals (HCPs).

DEFINE highlights the wide-ranging burdens of FSGS and IgAN on patients and care providers. Findings underscore the need for holistic, patient-centered care that recognizes lived experience and provides consistent lifestyle guidance and emotional support. Greater collaboration among HCPs, industry, and patient organizations is essential to improve self-management and quality of life.