Department of Medicine, University of Alabama, Birmingham, Birmingham.
Department of Hematology, Medical College of Georgia, Augusta University, Augusta.
JAMA Netw Open. 2020 May 1;3(5):e206016. doi: 10.1001/jamanetworkopen.2020.6016.
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.
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.
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 β0-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 (<19 vs 19-30 and 31-50 years) reporting better ED experiences.
These results suggested that a negative perception of care may be a barrier for patients seeking care. These findings underscore the necessity of implementation studies to improve access to quality care for this population, especially in the acute care setting.
镰状细胞病（SCD）是美国最常见的遗传性红细胞疾病，先前的研究表明，SCD 患者受到多种健康差异的影响，包括污名化、资金不平等以及更差的健康结果，这可能会妨碍他们获得高质量的医疗保健。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。
评估 SCD 相关医疗护理经验的青少年和成年 SCD 患者。
设计、地点和参与者：这项一次性调查研究评估了 440 名 SCD 青少年和成年人（年龄在 15 至 50 岁之间）的疼痛干扰、医疗保健质量和自我效能，评估了这些变量如何与他们对门诊和急诊部门（ED）护理的看法相关。2018 年，在 SCDIC 八个地点中的七个地点，由经过培训的研究协调员在办公室就诊期间进行了调查。
SCDIC 各站点未报告参与这项研究的人数，因此无法计算回复率。此外，受访者并非必须回答调查中的每个问题，因此，每个变量的回复率都不同。在 440 名 SCD 患者中，参与者主要是女性（245[55.7%]）和非裔美国人（428[97.3%]），平均（SD）年龄为 27.8（8.6）岁。大多数参与者（306/435[70.3%]）患有血红蛋白 SS 或血红蛋白 Sβ0-地中海贫血。大多数受访者（361/437[82.6%]）报告可以获得非急性（常规）SCD 护理，大多数受访者（382/413[92.1%]）表示对他们的常规护理医生满意。在 435 名参与者中，287 名（66.0%）报告在过去一年中因急性疼痛需要前往 ED。与常规护理临床医生相比，受访者对 ED 护理的满意度较低，约有一半（287 名中的 146 名[50.9%]）表示对 ED 护理质量满意或认为自己得到了足够的护理。参与者还指出，当他们经历严重疼痛或临床医生缺乏同理心时，这与护理质量差有关。年龄组与 ED 满意度相关，年龄较小的患者（<19 岁比 19-30 岁和 31-50 岁）报告 ED 体验更好。
这些结果表明，对护理的负面看法可能是患者寻求护理的障碍。这些发现强调了实施研究的必要性，以改善该人群获得高质量护理的机会，特别是在急性护理环境中。
