ISN-Led Global Scoping Review Highlights Socioeconomic Burden of Rare Kidney Diseases
Brussels, December 16, 2024
The International Society of Nephrology (ISN), in collaboration with The George Institute for Global Health-Australia, undertook a systematic scoping review on the socioeconomic and psychosocial impact of rare kidney diseases on patients and their caregivers. The in-press article has been published in Kidney International Reports®.
Although rare kidney diseases affect less than one in 2000 people, collectively, they pose significant and often overlooked public health challenges. Until now, evidence around their socioeconomic burden has not been systematically examined.
The scoping review analyzed 53 publications from the past decade. Key findings include:
- Disruptions in education: Identified in 32% of studies
- Challenges in maintaining employment and work productivity: Highlighted in 75% of studies
- Emotional and psychological impact: Reported in 32% of studies
- Financial hardship: Out-of-pocket expenses noted in 28% of articles
The findings highlight the substantial lifelong challenges affected individuals and their families face, emphasizing the urgent need for global advocacy and investment in health systems.
The findings also emphasize the need to shift focus from patient numbers to addressing the cumulative burden on families, caregivers, and communities to drive increased investment in treatment and develop support systems to help patients and caregivers with their everyday needs.
Most of the research reviewed was conducted in high-income countries, leaving significant gaps in understanding the impact in low- and middle-income regions, where healthcare access and social support systems may differ. The authors call for more inclusive research to guide equitable investments in targeted care and policy development.
As part of its mission to advance equitable kidney care for all, the ISN urges policymakers, researchers, and healthcare providers to address these gaps and ensure equitable care and support for patients with rare kidney diseases and their families worldwide.
About the ISN
The ISN is a global organization dedicated to advancing kidney health worldwide through education, research, and advocacy. The ISN works to bridge gaps in care and support equitable access to kidney health for all.
For media inquiries, please contact: Danielle Miller
Funding for this research was provided by Novartis in support of ISN’s broader initiative to improve kidney care worldwide.
