SELF-REPORTED QUALITY OF LIFE IN COMPLEMENT 3 GLOMERULOPATHY PATIENTS DELINEATED BY CKD STAGE: A REAL-WORLD, MULTI-COUNTRY SURVEY

E-Poster

Abstract Title

First Name *

Richard

Last Name *

Lafayette

Co-author 1

Raisa Sidhu raisa.sidhu@novartis.com Novartis Pharma AG HEOR Basel

Co-author 2

Clare Proudfoot clare.proudfoot@novartis.com Novartis Pharma AG HEOR Basel

Co-author 3

Katharina Pannagl katharina.pannagl@novartis.com Novartis Pharmaceuticals UK Ltd HEOR London

Co-author 4

Briana Ndife briana.ndife@novartis.com Novartis Pharmaceuticals Corporation HEOR New Jersey

Co-author 5

Serge Smeets serge.smeets@novartis.com Novartis Pharma AG HEOR Basel

Co-author 6

Kathleen Murphy kathleen_p.murphy@novartis.com Novartis Pharmaceuticals Corporation HEOR New Jersey

Co-author 7

Raymond Przybysz raymond.przybysz@novartis.com Novartis Pharmaceuticals Corporation HEOR New Jersey

Co-author 8

Jonathan de Courcy jonathan.decourcy@adelphigroup.com Adelphi Real World Rare Diseases Bollington

Co-author 9

Susanna Libby Susanna.Libby@adelphigroup.com Adelphi Real World Rare Diseases Bollington

Co-author 10

Smeeta Sinha smeeta.sinha@nca.nhs.uk NHS Renal Medicine Manchester

Co-author 11

Co-author 12

Co-author 13

Co-author 14

Co-author 15

Introduction

Complement 3 glomerulopathy (C3G) is a rare, chronic kidney disease (CKD), with an estimated worldwide incidence of 1-2 million people/year. C3G is associated with a high risk of disease progression and later stages are associated with worsening symptoms, but there are limited published data describing the health-related quality of life in patients with C3G. We aimed to evaluate the impact of CKD stage on the health-related quality of life in a multi-country study of C3G patients.

Methods

Data were drawn from the Adelphi C3G Disease Specific Programme, a cross-sectional survey, with retrospective data collection, of nephrologists and their consulting C3G patients conducted in France, Germany, Italy, Spain, the United Kingdom (EU5), China, Japan and the United States from August 2022 – April 2023. Nephrologists completed forms for 1-9 consecutively consulting C3G patients, reporting demographic and clinical information including CKD stage by glomerular filtration rate. These patients were then invited to voluntarily complete a survey, self-reporting impact of fatigue within the last seven days via the Functional Assessment of Chronic Illness Therapy (FACIT) – Fatigue and health-related quality of life via the EQ-5D-5L (US tariff), the EuroQol Visual Analogue Scale (EQ-VAS). Analyses presented here are descriptive.

Results

Conclusions

C3G was shown to impact many aspects of a patient’s quality of life, in particular causing severe fatigue that patients described as the second most bothersome symptom. Quality of life is notably lower for patients with stage 4/5 of CKD. Treatment to slow the progression of kidney disease in C3G patients, particularly to later stages, could help improve patient’s quality of life.

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