ArticleJournal of community genetics2025
The segmentation of the Argentine healthcare system in the care of patients with epidermolysis bullosa: challenges and proposals for a comprehensive model.
Article in Journal of community genetics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Epidermolysis bullosa is a rare genetic disorder characterized by extreme mucocutaneous fragility. The healthcare coverage in Argentina is divided into the public sector, social security, and the private sector. This study examines how this segmentation affects the socio-healthcare management of patients with EB, identifying barriers and challenges. A descriptive phenomenological qualitative design was employed. The sample included 91 participants: parents of minors with EB (n = 54), adults with EB (n = 26), and socio-healthcare professionals (n = 11). Data were collected through semi-structured interviews and open-ended online surveys. A reflexive thematic analysis was conducted using ATLAS.ti software. Health system segmentation negatively impacts the care of individuals with EB, alongside other factors such as deficient interdisciplinary coordination, the lack of protocols for transitioning from pediatric to adult care, centralization and scarcity of specialized services, and significant disparities in access to wound-care products and treatments. Healthcare inequities exacerbate the vulnerability of individuals with EB and their families. The disparities in socio-healthcare access for individuals with EB in Argentina are closely linked to the segmentation of the healthcare system. While the National Program for Rare Diseases represents progress, there remains an urgent need to implement a national plan that ensures equitable access to treatment, interdisciplinary teams, and specialized training.
Indexed as
Identifiers
What OpenQuestion holds
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.