Perspectives of individuals with sickle cell disease on barriers to care.
Perspectives of individuals with sickle cell disease on barriers to care.
复制标题
DOI：
10.1371/journal.pone.0265342
复制
发表时间：
2022
期刊：
影响因子：
3.7
通讯作者：
Kanter J
中科院分区：
文献类型：
--
作者：
Phillips S;Chen Y;Masese R;Noisette L;Jordan K;Jacobs S;Hsu LL;Melvin CL;Treadwell M;Shah N;Tanabe P;Kanter J
镰状细胞病（SCD）是一种遗传性血红蛋白病，主要影响美国的非洲裔美国人。该疾病与导致高医疗保健利用率的并发症相关，包括急诊科（艾德）就诊和住院。最佳SCD护理需要SCD专家参与的多学科方法，以确保预防性护理，最大限度地减少并发症，并防止不必要的艾德就诊和住院。然而，大多数患有SCD的人接受次优护理或与护理无关（没有看过SCD专家）。我们的目的是确定障碍，以照顾从个人的角度与SCD在多个国家的样本。我们于2018年3月至6月在三个综合SCD中心进行了一项多方法研究，包括调查和访谈。采访经过转录和编码，探讨了围绕护理障碍的主题。使用汇总统计数据分析了访谈中确定的特定主题的调查问题。我们对208名个人进行了调查，并进行了44次深入访谈。根据生态水平（即，个人、家庭/人际、提供者和社会环境/组织层面）。个人层面的障碍包括缺乏自我管理和疾病严重程度的知识。家庭/人际层面的障碍是照顾者的支持不足和竞争的生活需求。提供者层面的障碍是提供者知识有限、提供者缺乏经验、提供者与患者关系不佳、被区别对待以及提供者缺乏对患者SCD知识的了解。社会环境/组织层面的障碍包括交通有限、缺乏保险、行政障碍、护理协调不力以及由于诊所可用性有限、提供的服务有限或诊所拒绝提供SCD护理而导致的获得护理的机会减少。参与者报告了SCD护理的几个多层次障碍。有必要制定专门针对减少这些障碍的战略。我们的研究结果也可以为旨在定位和联系无关联个人的干预措施提供信息。
Sickle cell disease (SCD) is an inherited hemoglobinopathy that predominantly affects African Americans in the United States. The disease is associated with complications leading to high healthcare utilization rates, including emergency department (ED) visits and hospitalizations. Optimal SCD care requires a multidisciplinary approach involving SCD specialists to ensure preventive care, minimize complications and prevent unnecessary ED visits and hospitalizations. However, most individuals with SCD receive sub-optimal care or are unaffiliated with care (have not seen an SCD specialist). We aimed to identify barriers to care from the perspective of individuals with SCD in a multi-state sample. We performed a multiple methods study consisting of surveys and interviews in three comprehensive SCD centers from March to June 2018. Interviews were transcribed and coded, exploring themes around barriers to care. Survey questions on the specific themes identified in the interviews were analyzed using summary statistics. We administered surveys to 208 individuals and conducted 44 in-depth interviews. Barriers to care were identified and classified according to ecological level (i.e., individual, family/interpersonal, provider, and socio-environmental/organizational level). Individual-level barriers included lack of knowledge in self-management and disease severity. Family/interpersonal level barriers were inadequate caregiver support and competing life demands. Provider level barriers were limited provider knowledge, provider inexperience, poor provider-patient relationship, being treated differently, and the provider’s lack of appreciation of the patient’s SCD knowledge. Socio-environmental/organizational level barriers included limited transportation, lack of insurance, administrative barriers, poor care coordination, and reduced access to care due to limited clinic availability, services provided or clinic refusal to provide SCD care. Participants reported several multilevel barriers to SCD care. Strategies tailored towards reducing these barriers are warranted. Our findings may also inform interventions aiming to locate and link unaffiliated individuals to care.
登录
查看更多内容
影响因子：
13.8
作者：
Kanter, Julie;Gibson, Robert;Treadwell, Marsha
通讯作者：
Treadwell, Marsha
影响因子：
7.5
作者：
Hodges, Jason R.;Phillips, Shannon M.;Porter, Jerlym
通讯作者：
Porter, Jerlym
影响因子：
3.2
作者：
Blinder, Morey A.;Vekeman, Francis;Duh, Mei Sheng
通讯作者：
Duh, Mei Sheng
影响因子：
2.2
作者：
Cabana, Michael D;Kanter, Julie;Bardach, Naomi S
通讯作者：
Bardach, Naomi S
影响因子：
5.5
作者：
Hsu, Lewis L.;Green, Nancy S.;Martin, Molly
通讯作者：
Martin, Molly