AUTHOR=Wehrli Susanne , Dwyer Andrew A. , Baumgartner Matthias R. , Lehmann Carmen , Landolt Markus A. 

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

JOURNAL=International Journal of Public Health

VOLUME=69

YEAR=2024

URL=https://www.ssph-journal.org/journals/international-journal-of-public-health/articles/10.3389/ijph.2024.1607548

DOI=10.3389/ijph.2024.1607548

ISSN=1661-8564

ABSTRACT=<sec><title>Objectives</title><p>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).</p></sec><sec><title>Methods</title><p>Swiss adults (<italic>N</italic> = 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.</p></sec><sec><title>Results</title><p>We identified two patient clusters: higher (<italic>n</italic> = 227) and lower access (<italic>n</italic> = 114). Significantly associated with lower access were an unstable disease course (<italic>p</italic> &lt; 0.05), increased number of misdiagnoses (<italic>p</italic> &lt; 0.05), and diseases affecting the nervous system (<italic>p</italic> &lt; 0.01). Membership in the lower access cluster was significantly associated with worse HRQoL (<italic>p</italic> &lt; 0.05).</p></sec><sec><title>Conclusion</title><p>Findings highlight the need for comprehensive assessment of healthcare access in adults with rare diseases and identifies potential targets for tailored interventions.</p></sec>