ArticleFrontiers in public health2023
Out-of-pocket healthcare expenditures of Turkish households living with rare diseases.
Article in Frontiers in public health, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
6 citing papers in PubMed, 5 citations in OpenAlex.
- Patient- and Caregiver-Reported Experiences of Rare Diseases in Türkiye: A Patient-Organization-Recruited Online Survey.Journal of clinical medicine · 2026Article
- Out-of-pocket expenditures, accessibility, and affordability of low-protein nutrition in rare metabolic disorders in Türkiye.BMC health services research · 2026Article
- Barriers to social participation among patients with hemophilia: a qualitative study using social-ecological systems theory.Frontiers in public health · 2026Article
- Patterns of the Health and Economic Burden of 33 Rare Diseases in China: Nationwide Web-Based Study.JMIR public health and surveillance · 2024Article
- Socio-economic costs of rare diseases and the risk of financial hardship: a cross-sectional study.The Lancet regional health. Western Pacific · 2023Article
- Rare disease emerging as a global public health priority.Frontiers in public health · 2022Review
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Introduction: This study aims to determine the out-of-pocket health expenditures of households in Turkey where individuals with rare diseases are residing. Methods: The research population consisted registered members of associations who are members of the Rare Diseases Network. In addition to the general analysis including all participants, expenditures based on characteristics of disease holders were also calculated. Results: A total of 439 participants were included in the analysis. We determined that special nutrition was the highest expenditure group and emergency departments were the lowest expenditure group. When all the participants were evaluated, the average cost of rare diseases was found to be Ł22,743 (€2,877). A significant relationship was found between income status and out-of-pocket health expenditures ( Discussion: Policy makers should consider inclusion of special nutritional products and medical/non-medical devices used in treatment of rare diseases within the scope of reimbursement and the development of orphan drug legislation as the first actions to be taken.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.