Susanne Wehrli, Andrew A Dwyer, Matthias R Baumgartner, Carmen Lehmann, Markus A Landolt
{"title":"瑞士成人罕见病患者较低的医疗保健可及性及其与个人因素和与健康相关的生活质量的关系。","authors":"Susanne Wehrli, Andrew A Dwyer, Matthias R Baumgartner, Carmen Lehmann, Markus A Landolt","doi":"10.3389/ijph.2024.1607548","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>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><p><strong>Methods: </strong>Swiss adults (<i>N</i> = 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><p><strong>Results: </strong>We identified two patient clusters: higher (<i>n</i> = 227) and lower access (<i>n</i> = 114). Significantly associated with lower access were an unstable disease course (<i>p</i> < 0.05), increased number of misdiagnoses (<i>p</i> < 0.05), and diseases affecting the nervous system (<i>p</i> < 0.01). Membership in the lower access cluster was significantly associated with worse HRQoL (<i>p</i> < 0.05).</p><p><strong>Conclusion: </strong>Findings highlight the need for comprehensive assessment of healthcare access in adults with rare diseases and identifies potential targets for tailored interventions.</p>","PeriodicalId":14322,"journal":{"name":"International Journal of Public Health","volume":null,"pages":null},"PeriodicalIF":2.6000,"publicationDate":"2024-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461209/pdf/","citationCount":"0","resultStr":"{\"title\":\"Lower Healthcare Access and Its Association With Individual Factors and Health-Related Quality of Life in Adults With Rare Diseases in Switzerland.\",\"authors\":\"Susanne Wehrli, Andrew A Dwyer, Matthias R Baumgartner, Carmen Lehmann, Markus A Landolt\",\"doi\":\"10.3389/ijph.2024.1607548\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>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><p><strong>Methods: </strong>Swiss adults (<i>N</i> = 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><p><strong>Results: </strong>We identified two patient clusters: higher (<i>n</i> = 227) and lower access (<i>n</i> = 114). Significantly associated with lower access were an unstable disease course (<i>p</i> < 0.05), increased number of misdiagnoses (<i>p</i> < 0.05), and diseases affecting the nervous system (<i>p</i> < 0.01). Membership in the lower access cluster was significantly associated with worse HRQoL (<i>p</i> < 0.05).</p><p><strong>Conclusion: </strong>Findings highlight the need for comprehensive assessment of healthcare access in adults with rare diseases and identifies potential targets for tailored interventions.</p>\",\"PeriodicalId\":14322,\"journal\":{\"name\":\"International Journal of Public Health\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.6000,\"publicationDate\":\"2024-09-25\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461209/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"International Journal of Public Health\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.3389/ijph.2024.1607548\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/1/1 0:00:00\",\"PubModel\":\"eCollection\",\"JCR\":\"Q2\",\"JCRName\":\"PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"International Journal of Public Health","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.3389/ijph.2024.1607548","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH","Score":null,"Total":0}
Lower Healthcare Access and Its Association With Individual Factors and Health-Related Quality of Life in Adults With Rare Diseases in Switzerland.
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 (N = 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 (n = 227) and lower access (n = 114). Significantly associated with lower access were an unstable disease course (p < 0.05), increased number of misdiagnoses (p < 0.05), and diseases affecting the nervous system (p < 0.01). Membership in the lower access cluster was significantly associated with worse HRQoL (p < 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.
期刊介绍：
The International Journal of Public Health publishes scientific articles relevant to global public health, from different countries and cultures, and assembles them into issues that raise awareness and understanding of public health problems and solutions. The Journal welcomes submissions of original research, critical and relevant reviews, methodological papers and manuscripts that emphasize theoretical content. IJPH sometimes publishes commentaries and opinions. Special issues highlight key areas of current research. The Editorial Board''s mission is to provide a thoughtful forum for contemporary issues and challenges in global public health research and practice.
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