Department of Hematology, Academic Medical Center, Amsterdam, The Netherlands.
Department of Pediatric Hematology, Emma Children's Hospital, Academic Medical Center, Amsterdam, The Netherlands.
Am J Hematol. 2017 Feb;92(2):179-186. doi: 10.1002/ajh.24612.
Previous reports demonstrated that patients with sickle cell disease (SCD) experience pain on more than half of the observed days. Yet, these high incidences do not seem to match observations in our population. In this prospective cohort study, we aimed to assess the frequency and characteristics of daily, self-reported pain among adult SCD patients in the Netherlands. Consecutive patients were enrolled during routine outpatient visits and followed up to 6 months. A total of 55 patients completed 5,982 diary observation days. Median age was 27 years (IQR 23-43). Patients reported SCD related pain on 17% of the observed days; on 13% of these days this pain was not defined as a painful crisis, while 3% was reported as a painful crisis but managed at home, and on 1% of the observed days patients were admitted to the hospital. Analgesics were used on 52% of days with pain with a relatively infrequent use of oral opioids (9% of pain days). This first European study on pain in SCD indicates that pain appears to be significantly less frequent in our population as compared to previous study cohorts from the United States, and may be more representative for current SCD populations in other Western countries. Besides a more widespread use of hydroxycarbamide in modern disease management, differences in organization and accessibility of healthcare between countries may also explain this discrepancy.
先前的报告表明，镰状细胞病 (SCD) 患者在观察到的日子中有一半以上会经历疼痛。然而，这些高发生率似乎与我们人群中的观察结果不符。在这项前瞻性队列研究中，我们旨在评估荷兰成年 SCD 患者每日、自我报告疼痛的频率和特征。连续患者在常规门诊就诊期间被纳入，并随访 6 个月。共有 55 名患者完成了 5982 天的日记观察。中位年龄为 27 岁（IQR 23-43）。患者报告在观察到的日子中有 17%出现与 SCD 相关的疼痛；在这些日子中的 13%，这种疼痛不被定义为疼痛危机，而 3%被报告为疼痛危机但在家中管理，在观察到的日子中的 1%，患者被收治住院。在有疼痛的日子中，52%使用了镇痛药，而口服阿片类药物的使用相对较少（9%的疼痛日）。这是第一项关于 SCD 疼痛的欧洲研究，表明与来自美国的先前研究队列相比，我们人群中的疼痛似乎明显不那么频繁，并且可能更能代表其他西方国家当前 SCD 人群。除了在现代疾病管理中更广泛地使用羟基脲外，国家间医疗保健的组织和可及性差异也可能解释这种差异。
