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加拿大囊性纤维化患者群体中按种族和族裔划分的治疗结果差异。

Disparities in outcomes by race and ethnicity in the Canadian cystic fibrosis population.

作者信息

Holland Rachel, Stewart Hanna, Cheng Stephanie Y, Schroeder Miriam, Stanojevic Sanja

机构信息

Department of Community Health, and Epidemiology, Faculty of Medicine, Dalhousie University, Halifax, Canada.

Cystic Fibrosis Canada, Toronto, Canada.

出版信息

J Cyst Fibros. 2025 Mar;24(2):271-277. doi: 10.1016/j.jcf.2024.09.009. Epub 2024 Sep 21.

Abstract

BACKGROUND

Cystic Fibrosis has historically been described as a disease that affects people of European ancestry. Consequently, much of what we know about CF is based on evidence generated from data collected in white individuals. This may lead to systematic bias in how non-white people with CF are diagnosed and treated. In this study we compared clinical outcomes between the white and non-white people with CF in Canada.

METHODS

Canadian CF Registry data collected between 2000 and 2019 were used in this population-based cohort study. Demographic characteristics and clinical outcomes of people with CF identified as white and those identified as non-white were compared. Analyses were adjusted for cohort effects but not socioeconomic status.

RESULTS

Between 2000 and 2019, 5516 people with CF in the Registry were identified as white and 323 were identified as non-white. At diagnosis, the white and non-white groups were similar with respect to sex at birth, age at diagnosis, prevalence of pancreatic insufficiency, and meconium ileus. The non-white group had similar rates of CF-related complications and bacterial infections compared to the white, but worse lung function, worse nutritional status, lower treatment rates, and higher rate of hospitalizations. During the 20-year study period, the non-white group had a 1.85 higher risk of death compared to the white group (HR 95 %CI 1.39; 2.47).

INTERPRETATION

There is an urgent need understand why outcomes for Canadians with CF differ between white and non-white individuals, including the role of socioeconomic circumstances.

摘要

背景

囊性纤维化在历史上一直被描述为一种影响欧洲血统人群的疾病。因此,我们对囊性纤维化的许多了解都基于从白人个体收集的数据所产生的证据。这可能导致在囊性纤维化非白人患者的诊断和治疗方式上出现系统性偏差。在本研究中,我们比较了加拿大白人囊性纤维化患者和非白人囊性纤维化患者的临床结局。

方法

本基于人群的队列研究使用了2000年至2019年期间收集的加拿大囊性纤维化注册数据。比较了被确定为白人的囊性纤维化患者和被确定为非白人的囊性纤维化患者的人口统计学特征和临床结局。分析对队列效应进行了调整,但未对社会经济地位进行调整。

结果

在2000年至2019年期间,注册中心的5516名囊性纤维化患者被确定为白人,323名被确定为非白人。在诊断时,白人和非白人组在出生时的性别、诊断年龄、胰腺功能不全的患病率和胎粪性肠梗阻方面相似。与白人组相比,非白人组囊性纤维化相关并发症和细菌感染的发生率相似,但肺功能较差、营养状况较差、治疗率较低且住院率较高。在20年的研究期间,非白人组的死亡风险比白人组高1.85倍(风险比95%置信区间1.39;2.47)。

解读

迫切需要了解为什么加拿大囊性纤维化患者的结局在白人和非白人个体之间存在差异,包括社会经济状况的作用。

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