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Immunoglobulin A nephropathy (IgAN) is a rare disease with an estimated annual incidence of 25 per million worldwide. Approximately 50% of IgAN patients with proteinuria ≥1 g/day progress to kidney failure in 15 years. Limited data is available on treatment goals among patients with IgAN in the real-world setting and this analysis aims to close this gap.
Data were drawn from the Adelphi IgAN Disease Specific Programme, a survey of IgAN-treating nephrologists and their patients reporting cross-sectional and retrospective data. The survey ran in the United States, EU5 (France, Germany, Italy, Spain and the United Kingdom), China and Japan between June and October 2021. Patients filled self-completion forms regarding their treatment goals and their perception of currently available treatment options.
Out of a total of 1,792 patients, 886 (49%) filled self-completion forms; their mean age was 41.2 years and 57% were male.
Of these, 837 (94%) reported their treatment goals with the most common one being a relief from the overall IgAN symptoms (n=720, 86%). These symptoms included reduction of proteinuria (n=696, 83%) followed by reduction of hematuria (n=526, 63%), reduction of fatigue (n=496, 59%), relief from swelling (n=478, 57%) and delay/prevent progression of disease to a worse condition (n=461, 55%) (Figure 1).
At the time of survey, a total of 701 (79%) patients received non-immunosuppressants (ISTs) (including angiotensin-converting enzyme inhibitors and angiotensin receptor blockers), 404 (46%) received corticosteroids and 208 (23%) received non-steroidal ISTs. Overall, 158 (22%) patients reported that the current intervention did not help in symptom relief; this number was the highest in patients receiving non-steroidal ISTs (n=58, 32%). At the time of survey, 383 (44%) patients were very keen to try new treatments; highest in patients receiving non-steroidal ISTs (n=103, 50%). A large number of patients were concerned about progression to kidney failure (n=631, 71%) and the potential need for dialysis in the future (n=616, 69%). Overall, 164 (19%) patients were unsatisfied with the current treatment options (Table 1).
Relief of overall IgAN symptoms as a treatment goal was reported by the majority of patients and nearly half of the patients were open to trying new treatment options. More than two thirds of patients were concerned about the progression to kidney failure and the potential need for dialysis in the future despite the current intervention. The study findings highlight the unmet need with the available therapeutic options in achieving desired treatment goals, and thus, emphasize the need for new treatments. As patients expressed an interest in new treatments, building the IgAN patient communities with the aim of educating, connecting and empowering them to get early access to available therapies should be one of the future priorities for the healthcare system.