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

IF 2.6 3区医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH

International Journal of Public Health Pub Date : 2024-09-25 eCollection Date: 2024-01-01 DOI:10.3389/ijph.2024.1607548

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

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引用次数: 0

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 (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.

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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。

目的：本研究旨在确定瑞士患有罕见病的成年人中获得医疗服务的群体：本研究旨在确定瑞士患有罕见病的成年人获得医疗保健服务的情况，识别获得医疗保健服务的相关个人特征，以及对健康相关生活质量（HRQoL）的影响：方法：被诊断患有罕见病的瑞士成年人（N = 341）完成了一项在线调查，其中包括 "对医疗服务可及性的感知问卷"（PAHQ）和 "简表健康调查"（SF-12）。我们采用 medoids 周围分区算法，根据 PAHQ 确定患者群组。对各种社会人口学/疾病相关因素和 HRQoL 进行了评估：结果：我们确定了两个患者集群：就诊率较高的（n = 227）和就诊率较低的（n = 114）。病程不稳定（p < 0.05）、误诊次数增加（p < 0.05）和影响神经系统的疾病（p < 0.01）与就诊率较低有显著相关性。结论：研究结果表明，有必要对患者的健康状况进行全面评估：研究结果突出表明，有必要对患有罕见病的成年人获得医疗保健的情况进行全面评估，并确定有针对性干预措施的潜在目标。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

International Journal of Public Health 医学-公共卫生、环境卫生与职业卫生

CiteScore

4.20

自引率

2.20%

发文量

269

审稿时长

12 months

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.