Objectives This study aimed to develop a conceptual model (CM) of the adult and pediatric patient experience of immunoglobulin A nephropathy (IgAN), including disease signs/symptoms, treatment side-effects, and impact on functioning and wellbeing.

Methods A review was conducted to identify relevant qualitative literature via an electronic database search of journal articles (MEDLINE, Embase, PsycINFO; run June 2021), hand-searching conference proceedings, patient advocacy group websites and gray literature. Identified data (patient/caregiver quotes, author summaries and interpretations of patient experiences) were analysed using inductive, semantic thematic analysis techniques, aided by ATLAS.tiv7. Codes were applied to data and concepts (symptoms/impacts) were identified, named, and refined. A CM was developed by grouping related concepts into domains.

Results In total, 5 sources were identified for analysis; 2 journal articles, 2 blogs, and 1 patient organisation-sponsored ‘Voice of Patient’ meeting. The CM indicates whether concepts were reported as applicable to adults and/or pediatric patients, and whether concepts were reported to be disease signs/symptoms and/or treatment side-effects. Symptom domains included: swelling/puffiness (edema); pain/aches/discomfort; fatigue; weight gain; sleep problems; urinary problems; and gastrointestinal problems. Impact domains included impact on emotional/psychological wellbeing, physical functioning/ activities of daily living; social functioning; work/school; and relationships. It was not possible to identify the most salient/bothersome experiences from the data sources reviewed.

Conclusion We believe this to be a novel CM depicting the patient experience of IgAN. However, the depth of the CM is limited by the lack of available literature; further research with patients and clinical expert review are recommended to refine/ confirm the concepts and domains, and to determine any relationships between them. Further research is needed to explore the outcomes that are most meaningful to patients. The refined CM will provide a useful tool to inform the selection, development, and/or amendment of clinical outcome assessments for future IgAN clinical trials.