Pediatric Hematology and Oncology, University of Health Sciences, Ankara Child Health and Diseases Hematology Oncology Training and Research Hospital, Ankara, Turkey.
Pediatric Hematology and Oncology, Şanlıurfa Children's Hospital, Şanlıurfa, Turkey.
Pediatr Blood Cancer. 2019 May;66(5):e27636. doi: 10.1002/pbc.27636. Epub 2019 Feb 1.
Since the beginning of the Syrian civil war, more than 3.5 million Syrians have been under temporary protection status in Turkey. Because beta-thalassemia (BT) is a prevalent disorder in the Mediterranean countries, we decided to estimate the prevalence of and make an overview of the demographic, socioeconomic, medical characteristics, and healthcare problems of refugee children with BT.
Eighteen Turkish Pediatric Hematology Oncology Centers (PHOC) with 318 refugee children from 235 families participated in the study. The mean age of the patients was 8.1 ± 4.8 years (0.5-21 years). The mean time after immigration to Turkey was 2.5 ± 1.5 years (range, 0.1-7 years). Seventy-two (22.6%) of them were born and diagnosed with BT in Turkey. On physical examination, 82 patients (26%) were underweight and 121 patients (38%) were stunted. The appearance of a thalassemic face was reported for 207 patients (65.1%). Hepatomegaly and splenomegaly were reported in 217 (68.2%) and 168 (52.8%) patients, respectively. The median ferritin level was 2508 ng/mL (range, 17-21 000 ng/mL) at the first admission, and 2841 ng/mL (range, 26-12 981 ng/mL) at the last visit after two years of follow-up in a PHOC (P > 0.05). The most frequently encountered mutation was IVSI-110 (G>A) (31%). Before immigration, only 177 patients (55.6%) reported the use of chelators; after immigration it increased to 268 (84.3%).
Difficulties in communication, finding a competent translator capable in medical terminology, nonregular use of medications, and insensitivity to prenatal diagnosis were preliminary problems. The current extent of migration poses emerging socioeconomic and humanitarian challenges for refugee patients with BT.
自叙利亚内战开始以来，已有超过 350 万叙利亚人在土耳其获得临时保护身份。由于β-地中海贫血症（BT）在地中海国家较为普遍，我们决定评估在土耳其的 BT 难民儿童的患病率，并对其人口统计学、社会经济学、医学特征和医疗保健问题进行综述。
18 家土耳其儿科血液肿瘤学中心（PHOC）参与了这项研究，共有 235 个家庭的 318 名难民儿童。患者的平均年龄为 8.1±4.8 岁（0.5-21 岁）。移民到土耳其后的平均时间为 2.5±1.5 年（范围为 0.1-7 年）。其中 72 名（22.6%）在土耳其出生并被诊断患有 BT。体格检查显示，82 名患者（26%）体重不足，121 名患者（38%）发育迟缓。207 名患者（65.1%）出现了地中海贫血面容。217 名患者（68.2%）和 168 名患者（52.8%）分别有肝肿大和脾肿大。初次就诊时中位铁蛋白水平为 2508ng/mL（范围为 17-21000ng/mL），在 PHOC 随访 2 年后的最后一次就诊时为 2841ng/mL（范围为 26-12981ng/mL）（P>0.05）。最常见的突变是 IVSI-110（G>A）（31%）。在移民之前，只有 177 名患者（55.6%）报告使用螯合剂；移民后，这一比例增加到 268 名（84.3%）。
沟通困难、找到精通医学术语的合格翻译、药物使用不规律以及对产前诊断不敏感等问题是初步存在的问题。目前的移民规模给 BT 难民患者带来了新的社会经济和人道主义挑战。
