Abstract: PO1479
Humanistic Burden of Rare Kidney Diseases; Understanding the Impact of FSGS and IgAN on Patients and Caregivers: The HONUS Rationale and Study Design
Session Information
- Glomerular Diseases: Immunology and Inflammation in IgANP, C3GP, TMA, and Nephrotic Diseases
November 04, 2021 | Location: On-Demand, Virtual Only
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- 1202 Glomerular Diseases: Immunology and Inflammation
Author
- Szklarzewicz, Justyna, University Hospitals of Leicester NHS Trust, Leicester, Leicester, United Kingdom
Group or Team Name
- HONUS Advisory Board Members and HONUS Study Team
Background
While both Immunoglobulin A Nephropathy (IgAN) and Focal Segmental Glomerulosclerosis (FSGS) conditions have been shown to be associated with significant clinical and economic burden to healthcare systems, less is known about the humanistic burden associated with these diseases. Here we describe the Humanistic Burden of Rare KidNey Diseases: Understanding the Impact of FSGS and IgAN on Patients and Caregivers Study (HONUS), which aims to elucidate the impact of these conditions.
Methods
HONUS is being designed in consultation with patient and clinical community members as a multi-national, cross-sectional survey recruiting adult patients, caregivers (care-partners) and parents/care-partners of youth with FSGS or IgAN. Participants complete a comprehensive survey covering demographic and clinical information, health-related quality of life (HRQoL), and the impact these diseases have on education, career, employment, relationships, mental wellbeing, personal finances, lifestyle, and fear and uncertainty for the future.
Results
Humanistic burden considers the impact of illness on patient HRQoL, activities of daily living, caregiver health and HRQoL, and is commonly quantified in population health context as Disability- or Quality-Adjusted Life Years (DALYS or QALYS). Quantifying humanistic burden is foundational for value assessment of new therapeutic options, but also has broader benefits. For patients and care-partners, insights can validate and support individual experiences and coping. For patient advocacy groups, information can be used to raise awareness, facilitate education and develop resources for affected families. For the clinical community, evidence supports patient/family communication, education of the broader clinical community and contributes to informed decision making. For industry, data supports value assessments and ensures the patient and care-partner voice is heard. This begins with engagement of patient and clinical community members at inception of study design, ensuring the right elements are included in the study, the design fits with the evidence generation goal, and results are disseminated in a comprehensive and useful way.
Conclusion
HONUS will provide evidence quantifying the humanistic burden of FSGS and IgAN from patient and care-partner perspectives.
Funding
- Commercial Support –