Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care
Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care
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DOI：
10.1001/jamanetworkopen.2020.6016
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发表时间：
2020-05-29
影响因子：
13.8
通讯作者：
Treadwell, Marsha
中科院分区：
文献类型：
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作者：
Kanter, Julie;Gibson, Robert;Treadwell, Marsha
问题：在美国，患有镰状细胞病的青少年和成年人在护理方面遇到了哪些障碍？调查结果镰状细胞病实施联盟进行的这项调查研究在7个不同的州招募了440名青少年和成年人，发现大多数受访者对他们平时的护理医生感到满意，但在急性护理环境中有负面的经验。疼痛和疼痛发作的频率与患者报告的自我效能相关，进一步强调了该人群中重度疼痛与不良结局的相关性。在急诊室环境中对护理的负面看法可能是患有镰状细胞病的青少年和成人寻求护理的障碍。重要性镰状细胞病（SCD）是美国最常见的遗传性红细胞疾病，以前的研究表明，SCD患者受到多种健康差异的影响，包括污名化，资金不平等，和更差的健康结果，这可能会妨碍他们获得优质医疗保健的能力。这项需求评估是作为镰状细胞病实施联盟（SCDIC）的一部分进行的，以评估SCD患者可能面临的护理障碍。目的评价青少年和成人SCD患者的相关医疗护理经验。设计、设置和参与者这项一次性调查研究评估了440名患有所有基因型SCD的成人和青少年（年龄15至50岁）的疼痛干预、医疗保健质量和自我效能，并评估了这些变量如何与他们对门诊和急诊科（艾德）护理的看法相关。2018年，在8个SCDIC研究中心中的7个，由经过培训的研究协调员在办公室访视期间进行了一次调查。结果SCDIC研究中心没有报告参与本研究的个体数量;因此，无法计算应答率。此外，答卷人不必回答调查中的每一个问题;因此，每个问题的答复率因每个变量而异。在440名SCD患者中，参与者主要是女性（245 [55.7%]）和非洲裔美国人（428 [97.3%]），平均（SD）年龄为27.8（8.6）岁。大多数参与者（435例中的306例[70.3%]）患有血红蛋白SS或血红蛋白S β（0）-地中海贫血。大多数受访者（361/437 [82.6%]）报告可获得非急性（常规）SCD护理，大多数受访者（382/413 [92.1%]）对常规护理医生表示满意。在435名参与者中，287名（66.0%）报告在前一年因急性疼痛需要艾德就诊。受访者对他们的艾德护理的满意度低于他们通常的护理临床医生，大约一半（287人中的146人[50.9%]）对ED的护理质量感到满意或感到满意。参与者还指出，当他们经历严重疼痛或临床医生缺乏同情心时，这与护理质量不良有关。年龄组与艾德满意度相关，年轻患者（
Question What are the barriers to care experienced by adolescents and adults living with sickle cell disease in the United States? Findings This survey study conducted by the Sickle Cell Disease Implementation Consortium enrolled 440 adolescents and adults in 7 different states and found that most respondents were pleased with their usual care physicians but had negative experiences in acute care settings. Pain and the frequency of pain episodes were associated with patient-reported self-efficacy, further emphasizing the association of severe pain with poor outcomes in this population. Meaning A negative perception of care in the emergency department setting may be a barrier for seeking care among adolescents and adults living with sickle cell disease.Importance Sickle cell disease (SCD) is the most common inherited red blood cell disorder in the United States, and previous studies have shown that individuals with SCD are affected by multiple health disparities, including stigmatization, inequities in funding, and worse health outcomes, which may preclude their ability to access quality health care. This needs assessment was performed as part of the Sickle Cell Disease Implementation Consortium (SCDIC) to assess barriers to care that may be faced by individuals with SCD. Objective To assess the SCD-related medical care experience of adolescents and adults with SCD. Design, Setting, and Participants This one-time survey study evaluated pain interference, quality of health care, and self-efficacy of 440 adults and adolescents (aged 15 to 50 years) with SCD of all genotypes and assessed how these variables were associated with their perceptions of outpatient and emergency department (ED) care. The surveys were administered once during office visits by trained study coordinators at 7 of 8 SCDIC sites in 2018. Results The SCDIC sites did not report the number of individuals approached to participate in this study; thus, a response rate could not be calculated. In addition, respondents were not required to answer every question in the survey; thus, the response rate per question differed for each variable. Of 440 individuals with SCD, participants were primarily female (245 [55.7%]) and African American (428 [97.3%]) individuals, with a mean (SD) age of 27.8 (8.6) years. The majority of participants (306 of 435 [70.3%]) had hemoglobin SS or hemoglobin S beta(0)-thalassemia. Most respondents (361 of 437 [82.6%]) reported access to nonacute (usual) SCD care, and the majority of respondents (382 of 413 [92.1%]) noted satisfaction with their usual care physician. Of 435 participants, 287 (66.0%) reported requiring an ED visit for acute pain in the previous year. Respondents were less pleased with their ED care than their usual care clinician, with approximately half (146 of 287 [50.9%]) being satisfied with or perceiving having adequate quality care in the ED. Participants also noted that when they experienced severe pain or clinician lack of empathy, this was associated with a negative quality of care. Age group was associated with ED satisfaction, with younger patients (