College of Nursing, Medical University of South Carolina, Charleston, SC, United States of America.
Department of Hematology/Oncology, UCSF Benioff Children's Hospital Oakland, Oakland, CA, United States of America.
PLoS One. 2022 Mar 23;17(3):e0265342. doi: 10.1371/journal.pone.0265342. eCollection 2022.
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.
镰状细胞病（SCD）是一种遗传性血红蛋白病，主要影响美国的非裔美国人。该疾病与导致高医疗利用率的并发症有关，包括急诊部（ED）就诊和住院治疗。最佳的 SCD 护理需要多学科方法，包括 SCD 专家，以确保预防护理，最小化并发症并防止不必要的 ED 就诊和住院治疗。然而，大多数 SCD 患者接受的护理不尽人意，或者没有联系护理（没有看过 SCD 专家）。我们旨在从多州样本中 SCD 患者的角度确定护理障碍。
我们进行了一项多方法研究，包括 2018 年 3 月至 6 月在三个综合 SCD 中心进行的调查和访谈。访谈记录被转录并进行编码，探讨了护理障碍的主题。使用总结统计分析了访谈中确定的具体主题的调查问题。
我们对 208 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/人际关系、提供者和社会环境/组织水平）确定并分类了护理障碍。个人层面的障碍包括自我管理和疾病严重程度方面的知识不足。家庭/人际关系层面的障碍包括照顾者支持不足和生活需求竞争。提供者层面的障碍包括提供者知识有限、提供者经验不足、提供者与患者关系不佳、受到不同待遇以及提供者对患者 SCD 知识的不重视。社会环境/组织层面的障碍包括交通不便、缺乏保险、行政障碍、护理协调不善，以及由于诊所可用性、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。有必要制定针对这些障碍的策略。我们的研究结果也可能为旨在寻找并将未联系的患者与护理联系起来的干预措施提供信息。
