A Policy Call to Address Rare Kidney Disease in Health Care Plans.
Détails
Télécharger: 37294578.pdf (683.54 [Ko])
Etat: Public
Version: Final published version
Licence: CC BY 4.0
Etat: Public
Version: Final published version
Licence: CC BY 4.0
ID Serval
serval:BIB_8E9E3AF30D72
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Institution
Titre
A Policy Call to Address Rare Kidney Disease in Health Care Plans.
Périodique
Clinical journal of the American Society of Nephrology
ISSN
1555-905X (Electronic)
ISSN-L
1555-9041
Statut éditorial
Publié
Date de publication
01/11/2023
Peer-reviewed
Oui
Volume
18
Numéro
11
Pages
1510-1518
Langue
anglais
Notes
Publication types: Journal Article ; Research Support, Non-U.S. Gov't
Publication Status: ppublish
Publication Status: ppublish
Résumé
Despite a large number of people globally being affected by rare kidney diseases, research support and health care policy programs usually focus on the management of the broad spectrum of CKD without particular attention to rare causes that would require a targeted approach for proper cure. Hence, specific curative approaches for rare kidney diseases are scarce, and these diseases are not treated optimally, with implications on the patients' health and quality of life, on the cost for the health care system, and society. There is therefore a need for rare kidney diseases and their mechanisms to receive the appropriate scientific, political, and policy attention to develop specific corrective approaches. A wide range of policies are required to address the various challenges that target care for rare kidney diseases, including the need to increase awareness, improve and accelerate diagnosis, support and implement therapeutic advances, and inform the management of the diseases. In this article, we provide specific policy recommendations to address the challenges hindering the provision of targeted care for rare kidney diseases, focusing on awareness and prioritization, diagnosis, management, and therapeutic innovation. In combination, the recommendations provide a holistic approach aiming for all aspects of rare kidney disease care to improve health outcomes, reduce the economic effect, and deliver benefits to society. Greater commitment from all the key stakeholders is now needed, and a central role should be assigned to patients with rare kidney disease to partner in the design and implementation of potential solutions.
Mots-clé
Humans, Quality of Life, Delivery of Health Care, Health Policy, Kidney Diseases/diagnosis, Kidney Diseases/therapy
Pubmed
Web of science
Open Access
Oui
Création de la notice
14/06/2023 9:52
Dernière modification de la notice
13/04/2024 6:14