Abstract Background and Aims C3 glomerulopathy (C3G) has an estimated incidence of 1 to 2 per million per year and is associated with a high risk of disease progression, with approximately 50% of patients reaching kidney failure within ten years of diagnosis; despite this, there are currently limited treatment options available. The impact of C3G on patient fatigue and quality of life (QoL) is well understood but not well described in large scale real-world settings; this study aims to address this. Method Data were drawn from the Adelphi C3G Disease Specific Programme™, a cross-sectional survey with retrospective data collection of C3G-treating nephrologists in France, Germany, Italy, Spain, the United Kingdom (EU5), China, Japan, and the United States (US) from August 2022 – April 2023. Nephrologists completed surveys for 1–9 consecutively consulted C3G patients, reporting patient demographics, treatment history, symptoms and QoL. Patients for whom nephrologists completed a form were then invited to complete a voluntary follow-up questionnaire to capture impact of C3G across QoL metrics including the 5-level EQ-5D version [EQ-5D-5L] (which captures QoL at the time of survey) and the Functional Assessment of Chronic Illness Therapy (FACIT) – Fatigue (which captures typical impact of fatigue across the 7 days prior to survey completion). Analyses were descriptive. Results Overall, 111 nephrologists reported on 385 patients (EU5 n=189, China n=60, Japan n=36, US n=100). At the time of the survey, median (interquartile range; IQR) patient age was 42.0 (30.0, 55.0) years and 59% of patients were male. Median (IQR) proteinuria was 1.4 g/24 hr (0.8 g/24 hr-3.0 g/24 hr) and eGFR was 50.0 mL/min/1.73m2 (32.00 mL/min/1.73m2 -70.00 mL/min/1.73m2). Of the 385 patients with physician reported data, 118 patients completed their own matched questionnaire, the majority of which were based in China (EU5 n=33, China n=60, Japan n=6, US n=19). Among these patients who completed the EQ-5D 74% experienced anxiety and/or depression, 65% felt pain and/or discomfort and 63% experienced problems doing their usual activities. QoL was also impacted across the further 2 domains: 42% experienced mobility problems and 30% experienced self-care problems (washing or dressing themself). Fatigue as measured by the FACIT fatigue was commonly reported across all patients; 93% of patients felt tired, 91% felt fatigued, 84% felt listless and 82% felt weak all over. The majority (77%) also reported that they needed to sleep during the day. Fatigue impacted all aspects of the patients’ lives; 47% reported feeling too tired to eat, 62% required some help to conduct their usual activities, 71% struggled to start things because they are tired, 74% struggled to finish things because they are tired and 78% reported limiting their social activities due to their fatigue. Most patients (69%) also reported feeling some level of frustration due to tiredness preventing them from doing what they want to do, and 3% felt they could not do their usual activities at all. All the above results on anxiety and depression, pain and discomfort and fatigue were relatively similar across all regions, with EU5 generally reporting a slightly lower frequency. Conclusion Chronic kidney disease (CKD) such as C3G places a substantial burden on patients’ QoL. Living with C3G has a clear impact on all aspects of the patients’ lives, encompassing both an emotional impact (e.g., anxiety/depression and frustration), as well as a physical impact (e.g., pain/discomfort, mobility and fatigue). More efficacious treatment options are needed to treat the cause of C3G to improve patients’ daily lives, increase their QoL, and to reduce the impact of living with C3G.
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Nov 1, 2024
Jiunn Wang + 10
Just Published
Open Access