城市囊性纤维化项目中成人的健康差异。
Health Disparities among adults cared for at an urban cystic fibrosis program.
机构信息
Columbia University Irving Medical Center, 622 West 168th Street, New York, NY, 10032, USA.
Columbia University Mailman School of Public Health, 722 West 168th Street, New York, NY, 10032, USA.
出版信息
Orphanet J Rare Dis. 2021 Jul 31;16(1):332. doi: 10.1186/s13023-021-01965-4.
BACKGROUND
Evidence is conflicting regarding differential health outcomes in racial and ethnic minorities with cystic fibrosis (CF), a rare genetic disease affecting approximately 28,000 Americans. We performed a cross-sectional analysis of health outcomes in Black/Latinx patients compared with non-Hispanic Caucasian patients cared for in a CF center in New York City. Adult patients enrolled in the CF Foundation Patient Registry at the Columbia University Adult CF Program and seen at least once during 2019 were included. Health metrics were compared between Black/Latinx and non-Hispanic Caucasian patients.
RESULTS
262 patients were eligible. 39 patients (15%) identified as Black/Latinx or non-Hispanic Caucasian. Descriptive statistics are reported with mean (standard deviation). Current age was 35.9 (13.3) years for non-Hispanic Caucasian and 32.0 (9.3) years for Black/Latinx patients (p = 0.087). Age of diagnosis did not differ between groups; 9.56 (15.96) years versus 11.59 (15.8) years for non-Hispanic Caucasian versus Black/Latinx respectively (p = 0.464). Pulmonary function, measured as mean forced expiratory volume in one second (FEV1) was 70.6 (22.5) percent predicted in non-Hispanic Caucasian versus 59.50 (27.9) percent predicted in Black/Latinx patients (p = 0.010). Number of visits to the CF clinic were similar between groups. When controlled for age, gender, co-morbidities, median income, and insurance status, there was a continued association between minority status and lower FEV1.
CONCLUSIONS
Minorities with CF have significantly lower pulmonary function, the major marker of survival, than non-Hispanic Caucasians, even when controlled for a variety of demographic and socioeconomic factors that are known to affect health status in CF. Significant health disparities based on race and ethnicity exist at a single CF center in New York City, despite apparent similarities in access to guideline based care at an accredited CF Center. This data confirms the importance of design of culturally appropriate preventative and management strategies to better understand how to direct interventions to this vulnerable population with a rare disease.
背景
囊性纤维化 (CF) 是一种罕见的遗传性疾病，影响着大约 28000 名美国人，种族和族裔少数民族的健康结果存在争议。我们对在纽约市 CF 中心接受治疗的黑人和拉丁裔患者与非西班牙裔白种人患者的健康结果进行了横断面分析。
纳入了在哥伦比亚大学成人 CF 项目的 CF 基金会患者登记处注册并在 2019 年至少就诊过一次的成年患者。比较了黑人和拉丁裔与非西班牙裔白种人患者之间的健康指标。
结果
262 名患者符合条件。39 名患者（15%）为黑人和拉丁裔或非西班牙裔白种人。报告描述性统计数据，平均值（标准差）。非西班牙裔白种人的当前年龄为 35.9（13.3）岁，黑人和拉丁裔为 32.0（9.3）岁（p=0.087）。两组诊断年龄无差异；非西班牙裔白种人分别为 9.56（15.96）岁和 11.59（15.8）岁，黑人和拉丁裔患者（p=0.464）。作为平均用力呼气量的第一秒（FEV1）的肺功能，非西班牙裔白种人的预测值为 70.6（22.5）%，而黑人和拉丁裔患者的预测值为 59.50（27.9）%（p=0.010）。两组 CF 诊所就诊次数相似。当控制年龄、性别、合并症、中位数收入和保险状况时，少数族裔身份与较低的 FEV1 之间仍存在关联。
结论
即使在控制已知影响 CF 患者健康状况的多种人口统计学和社会经济因素后，患有 CF 的少数民族的肺功能明显低于非西班牙裔白种人，肺功能是生存的主要标志。在纽约市的一家 CF 中心，基于种族和族裔的显著健康差异存在，尽管在获得经认可的 CF 中心的基于指南的护理方面似乎存在相似之处。这项数据证实了设计文化上适当的预防和管理策略的重要性，以更好地了解如何将干预措施针对这一脆弱的罕见疾病人群。
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