Lattimer Lakshmi, Haywood Carlton, Lanzkron Sophie, Ratanawongsa Neda, Bediako Shawn M, Beach Mary Catherine
Osler Medical Training Program, Johns Hopkins Hospital.
J Health Care Poor Underserved. 2010 Nov;21(4):1114-23. doi: 10.1353/hpu.2010.0940.
Adults with sickle cell disease (SCD) have often reported difficulties obtaining care during vaso-occlusive crisis (VOC) in qualitative studies.
We measured the experiences of 45 SCD patients who received in-hospital care for VOC using the Picker Patient Experience Questionnaire (PPE-15), and used the one sample binomial test to compare with national norms.
Most SCD patients reported that they were insufficiently involved in decisions (86%), staff gave conflicting information (64%), it wasn't easy to find someone to discuss concerns (61%), doctors' answers to questions were not clear (58%), nurses' answers to questions were not clear (56%), doctors did not always discuss fears and anxieties (53%), and nurses did not always discuss fears and anxieties (52%). A greater percentage of SCD patients than the U.S. sample in 9 of 12 areas reported problems.
Further research is needed to determine the consequences of and potential interventions to improve these poor experiences.
在定性研究中，患有镰状细胞病（SCD）的成年人经常报告在血管闭塞性危机（VOC）期间难以获得护理。
我们使用Picker患者体验问卷（PPE - 15）测量了45名因VOC接受住院治疗的SCD患者的体验，并使用单样本二项式检验与全国规范进行比较。
大多数SCD患者报告称，他们在决策中参与不足（86%），工作人员提供的信息相互矛盾（64%），很难找到人讨论担忧的问题（61%），医生对问题的回答不明确（58%），护士对问题的回答不明确（56%），医生并不总是讨论恐惧和焦虑（53%），护士也并不总是讨论恐惧和焦虑（52%）。在12个领域中的9个领域，报告存在问题的SCD患者比例高于美国样本。
需要进一步研究以确定这些不良体验的后果以及改善这些体验的潜在干预措施。
