Division of Child and Adolescent Health Psychology, Department of Psychology, University of Zurich, Zurich, Switzerland.
Children's Research Center, University Children's Hospital Zurich, Zurich, Switzerland.
Int J Public Health. 2024 Sep 25;69:1607548. doi: 10.3389/ijph.2024.1607548. eCollection 2024.
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).
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.
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).
Findings highlight the need for comprehensive assessment of healthcare access in adults with rare diseases and identifies potential targets for tailored interventions.
本研究旨在确定瑞士罕见病患者获得医疗保健的聚类，确定与获得途径相关的个体特征，以及对健康相关生活质量（HRQoL）的影响。
瑞士成年人（n=341）诊断患有罕见病，完成了一项在线调查，包括医疗保健感知问卷（PAHQ）和健康调查简表 12 项（SF-12）。我们采用中位数分区算法根据 PAHQ 识别患者聚类。评估了各种社会人口统计学/疾病相关因素和 HRQoL。
我们确定了两个患者聚类：较高获得途径（n=227）和较低获得途径（n=114）。与较低获得途径显著相关的因素包括疾病进程不稳定（<0.05）、误诊次数增加（<0.05）和影响神经系统的疾病（<0.01）。较低获得途径聚类的成员与较差的 HRQoL 显著相关（<0.05）。
研究结果强调了对罕见病成年患者获得医疗保健的全面评估的必要性，并确定了有针对性干预的潜在目标。
