PATIENT PERSPECTIVES ON PHARMACOLOGICAL TREATMENTS FOR GLOMERULONEPHRITIS: PRIORITIZING DISEASE CONTROL, ORAL TREATMENTS AND SHARED DECISION-MAKING

Chronic glomerulonephritis (CGN) significantly impacts patients (pts) on physical, emotional, and economic levels due to its symptoms and prognosis. This collaborative study with the National Federation of Associations for the Fight Against Kidney Diseases (ALCER, according to Spanish spelling), aims to describe the burden of CGN from the pts’ perspective, and to identify and prioritize their preferences regarding pharmacological treatment (tx). Understanding what pts value most can guide tx decisions and enhance the evidence base for shared decision-making in patient-centered care.

Market research study conducted via online questionnaires to pts with a biopsy-confirmed diagnosis of 10 different GN, aged ≥12 years and their caregivers (for <18 years pts). Pts were invited to participate by nephrologists (81 clinical nephrologists and 15 pediatric nephrologists) of 52 hospitals across all Spanish regions. Questionnaires covered 5 domains: sociodemographic and clinical characteristics, impact of the disease (psycho-emotional well-being and daily life activities, patient journey in the health system, tx, and economic impact).

360 pts participated: 337 adult and 23 adolescent pts with their respective caregivers. Most of the pts had native kidneys (85.6%); 7.5% had been transplanted and 6.9% were on dialysis. 90.0% of them received pharmacological tx. Most pts were very satisfied with their tx (87.7%) and perceived their disease as being under control (83.3%). Nevertheless, although many pts perceived their disease as controlled, most continued to report persistent and severe signs and symptoms, such us proteinuria, fatigue and pain. The most valued tx attribute was disease control (39.4%), followed by maintenance or improvement of kidney function (34.4%) and symptom improvement (14.7%) (Figure). Oral administration (once or twice daily) was preferred by 83.6% of the pts, while subcutaneous self-injections (6.1%) and intravenous infusions (8.3%) were less favored. Subcutaneous injections administered by healthcare professionals were the least preferred option (<2.0%). Trust and satisfaction in the patient-physician relationship were high, with 97.2% reporting complete trust and 96.2% high satisfaction. Additionally, 94.4% were satisfied with the time dedicated by their physician, and 92.5% appreciated coordination with other healthcare professionals. Although 85.8% of the pts reported that their physician explained available tx options, only 65.8% felt involved in the tx decision, highlighting a gap in shared decision-making.

Pts with CGN diseases prioritize long-term disease control and preservation of kidney function, highlighting a strong focus on slowing disease progression. Convenience and non-invasive tx options are also highly valued, with oral administration preferred by 83.6% of pts, suggesting future therapies should align with these expectations. Despite high levels of information provided by physicians (85.8%), only 65.8% of pts feel actively involved in tx decisions, revealing a gap in shared decision-making. These findings underscore the need to strengthen collaborative dialogue and promote pts empowerment in clinical care.