Unveiling the humanistic burden of C3 glomerulopathy in Italy: a narrative medicine multicentre project

Abstract Background. Evaluating the impact of C3 glomerulopathy (C3G) on quality of life (QoL) and its humanistic burden is critical to a deeper understanding of the condition in clinical practice. This Narrative Medicine (NM) project collected C3G narratives to investigate QoL and humanistic challenges associated with C3G and to gain insights for a more profound knowledge of this disease. Methods. The project was conducted in Italy from January to October 2023 and involved eight hospital-based centres and two C3G patient associations. Illness plots and parallel charts were collected through the project website, along with a survey to collect sociodemographic and QoL data. Narratives were analysed using MAXQDA software and interpretive coding. Results. Seventeen adult patients with C3G and 14 informal caregivers participated in the project, along with 12 treating nephrologists who wrote 15 parallel charts. On receiving the diagnosis, 36% of patients and 20% of caregivers reported feeling anxious, while 46% of patients and 50% of caregivers expressed disbelief. Nephrologists experienced anxiety in 20% and found the diagnosis a challenging moment in 26% of parallel charts. Concerns about C3G evolution were reported by 25% of patients and 40% of caregivers and nephrologists, while reassurance was expressed by 42% of patients and 60% of caregivers and nephrologists. Treatments were defined as burdensome by 33% of patients and hopeful by 17%. Patient and caregiver satisfaction with the care pathway was reported by 58% and 60%, respectively, while 45% of patients, 18% of caregivers and nephrologists in 40% of parallel charts called for more research funding and therapies. C3G significantly impacted work for 50% of patients, resulting in an average loss of 52.7% of working days. The impact on social activities and relationships varied, with 40% of patients reporting a low impact and 40% a moderate to high impact. Conclusions. This project marked the first Italian NM initiative on C3G. NM has shown to be a valuable tool for understanding the C3G illness experience and raising awareness about the living with this condition.