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Lower Healthcare Access and Its Association With Individual Factors and Health-Related Quality of Life in Adults With Rare Diseases in Switzerland. | LitMetric

AI Article Synopsis

  • The study investigates healthcare access for Swiss adults with rare diseases, aiming to find patterns and their effects on health-related quality of life (HRQoL).
  • Utilizing surveys from 341 participants, two groups were identified: those with high access (227 individuals) and those with low access (114 individuals).
  • Factors linked to lower access included unstable disease conditions, higher misdiagnoses, and neurological diseases, which also correlated with poorer HRQoL, underscoring the need for improved healthcare strategies.

Article Abstract

Objectives: This study aims to determine clusters of access to healthcare among adults with rare diseases in Switzerland, identify associated individual characteristics of access, and impact on health-related quality of life (HRQoL).

Methods: Swiss adults ( = 341) diagnosed with a rare disease completed an online survey including the Perception of Access to Healthcare Questionnaire (PAHQ) and Short Form Health Survey (SF-12). We employed partition around medoids algorithm to identify patient clusters based on the PAHQ. Various sociodemographic/disease-related factors and HRQoL were assessed.

Results: We identified two patient clusters: higher ( = 227) and lower access ( = 114). Significantly associated with lower access were an unstable disease course ( < 0.05), increased number of misdiagnoses ( < 0.05), and diseases affecting the nervous system ( < 0.01). Membership in the lower access cluster was significantly associated with worse HRQoL ( < 0.05).

Conclusion: Findings highlight the need for comprehensive assessment of healthcare access in adults with rare diseases and identifies potential targets for tailored interventions.

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Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461209PMC
http://dx.doi.org/10.3389/ijph.2024.1607548DOI Listing

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