eprintid: 10205785
rev_number: 7
eprint_status: archive
userid: 699
dir: disk0/10/20/57/85
datestamp: 2025-03-10 08:26:16
lastmod: 2025-03-10 08:26:16
status_changed: 2025-03-10 08:26:16
type: article
metadata_visibility: show
sword_depositor: 699
creators_name: Palagyi, A
creators_name: Sengupta, A
creators_name: Moorthy, M
creators_name: Malik, C
creators_name: Barratt, J
creators_name: Devuyst, O
creators_name: Ulasi, II
creators_name: Gale, DP
creators_name: Wang, S
creators_name: Angell, B
creators_name: Jha, V
creators_name: Jan, S
title: Systematic Scoping Review of Socioeconomic Burden and Associated Psychosocial Impact in Patients With Rare Kidney Diseases and Their Caregivers
ispublished: pub
divisions: UCL
divisions: B02
divisions: C10
divisions: D17
divisions: G93
keywords: education; lost productivity; rare kidney diseases; scoping review; socioeconomic burden
note: © 2024 International Society of Nephrology. Published by Elsevier Inc. This is an open access article under the CC BYNC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
abstract: Introduction: Rare kidney diseases constitute a significant public health challenge but have attracted limited research investment. The evidence about the socioeconomic burden of rare kidney diseases has not been systematically examined. Such evidence is critical for generating the advocacy and awareness necessary to impel scientific and policy investment in targeted care in health systems worldwide. We aimed to evaluate the socioeconomic burden borne by patients with rare kidney diseases, their families, and caregivers, and the related psychosocial impact. Methods: We undertook a systemic scoping review of the recent evidence of the socioeconomic and psychosocial burden of rare kidney diseases, to identify gaps in the understanding of this burden across contexts and factors influencing them. Three databases and the grey literature were searched for relevant studies published in the 10 years before April 30, 2023. Results: Fifty-three articles met the inclusion criteria; one-quarter of these articles included rare disease cohorts in which the kidney was the primary organ affected, and 91% of studies were conducted in high-income countries. Evidence of substantial life-long socioeconomic burden emerged across the following 4 main categories: education (n = 17 articles [32%]), work and employment (n = 40 [75%] articles), psychosocial and emotional impact (n = 17 [32%]), and out-of-pocket expenses (n = 15 [28%]). Conclusion: Significant gaps in our understanding of the socioeconomic burden remain, particularly in lower-resource health systems, among traditionally marginalized populations, and for rare diseases for which kidney is the primary affected organ. Further exploration of socioeconomic burden within these populations is vital to inform effectively targeted investment in advocacy and health care innovation for affected individuals.
date: 2025-03-01
date_type: published
publisher: Elsevier BV
official_url: https://doi.org/10.1016/j.ekir.2024.12.005
oa_status: green
full_text_type: pub
language: eng
primo: open
primo_central: open_green
verified: verified_manual
elements_id: 2355482
doi: 10.1016/j.ekir.2024.12.005
lyricists_name: Gale, Daniel
lyricists_id: DGALE18
actors_name: Gale, Daniel
actors_id: DGALE18
actors_role: owner
full_text_status: public
publication: Kidney International Reports
volume: 10
number: 3
pagerange: 838-854
issn: 2468-0249
citation:        Palagyi, A;    Sengupta, A;    Moorthy, M;    Malik, C;    Barratt, J;    Devuyst, O;    Ulasi, II;                     ... Jan, S; + view all <#>        Palagyi, A;  Sengupta, A;  Moorthy, M;  Malik, C;  Barratt, J;  Devuyst, O;  Ulasi, II;  Gale, DP;  Wang, S;  Angell, B;  Jha, V;  Jan, S;   - view fewer <#>    (2025)    Systematic Scoping Review of Socioeconomic Burden and Associated Psychosocial Impact in Patients With Rare Kidney Diseases and Their Caregivers.                   Kidney International Reports , 10  (3)   pp. 838-854.    10.1016/j.ekir.2024.12.005 <https://doi.org/10.1016/j.ekir.2024.12.005>.       Green open access   
 
document_url: https://discovery.ucl.ac.uk/id/eprint/10205785/1/2025%20Palagyi%20et%20al%20Scoping%20Review%20of%20Psychosocial%20impact%20of%20RKDs%20Kindey%20Int%20Rep.pdf