Introduction: 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.
Methods: 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.
Results: 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).
Conclusion: 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.
Keywords: Caregiver burden; Focal segmental glomerular sclerosis; IgA nephropathy; Patient experience data; Patient-centered care.
Focal segmental glomerulosclerosis (FSGS) and IgA nephropathy (IgAN) are long-term kidney conditions that can seriously affect health. Although healthcare professionals (HCPs) understand how these conditions affect the body, less is known about how they impact everyday lives. The DEFINE study explored the personal and emotional experiences of people living with FSGS or IgAN. The study included 32 participants: adults with FSGS or IgAN and care providers – adults who support someone with these conditions in daily life. Participants were from Germany, Spain, the UK, and the USA. They completed a short survey and took part in online group discussions. Fatigue was the most challenging symptom, affecting daily routines, work, and social life, but was often not addressed during medical visits. Many also described being confused by inconsistent guidance about diet, exercise, or lifestyle changes. Emotional struggles were common, including sadness, anxiety, and fear of disease progression. Work and finances were also affected, with some needing to reduce hours or to stop working due to their condition. Care providers described similar challenges and often adjusted their own lives to support their loved ones. Participants said that peer support, being involved in their care, and seeing HCPs who really understand their condition helped them to feel more supported. DEFINE shows that FSGS or IgAN affect many parts of life. The findings highlight the need for care that looks at the whole person – care that reflects people’s real-life experiences, provides consistent lifestyle advice, and offers emotional support.
© 2025 The Author(s). Published by S. Karger AG, Basel.