OBJECTIVES: Immunoglobulin A nephropathy (IgAN) is the most common form of primary glomerulonephritis worldwide. The aim of this systematic literature review was to assess health-related quality of life (HRQoL) and utilities associated with IgAN.

METHODS: Embase, MEDLINE, Pubmed not MEDLINE, and Cochrane database were searched for relevant publications up to 6^th June 2021, with no date or language limits. Additionally, key conference and health technology assessment websites were searched. Publications were independently screened by two reviewers to identify evidence on HRQoL and utilities.

RESULTS: Out of 3,175 citations identified, four studies were included with sample sizes ranging from 51−344. Two of the studies involved pediatric patients. The mean/median estimated glomerular filtration rate values ranged from 34.9-107.2 mL/min/1.73 m². Various instruments were used to report HRQoL outcomes across studies. Lower physical, psychological, and social well-being scores were reported in pediatric IgAN patients compared to their healthy peers, using the Kidscreen-52 questionnaire. Adverse events associated with steroid therapy i.e. body weight increase and short stature might have contributed to lower HRQoL in children. Tonsillectomy, a common intervention for treating IgAN in Japan, resulted in postoperative pain irrespective of the method used. Physical IgAN symptoms such as increasing severity of edema were associated with worsening HRQoL in both pediatric patients and adults. Furthermore, IgAN negatively impacted sleep and mental health. Intervention, such as personalized physical activity training programs can significantly improve psychological symptoms such as depression (p< 0.001), shown by the Beck Depression Inventory-II scale.

CONCLUSIONS: This review did not identify health state utility values for IgAN, and evidence on HRQoL was sparse. Existing HRQoL evidence suggests that both the disease and currently used treatments such as immunosuppressants and tonsillectomy impact patients’ HRQoL. This warrants the need for improved targeted therapy in IgAN to improve quality of life.