Salih Karimeldin M A
Department of Pediatrics, College of Medicine, University of Bahri, Khatoum, Sudan.
Department of Pediatrics/Medical Education, College of Medicine, University of Bisha, Bisha, Saudi Arabia.
J Family Med Prim Care. 2019 Feb;8(2):468-471. doi: 10.4103/jfmpc.jfmpc_444_18.
Sickle cell anemia (SCA) is prevalent in Sudan in general, and in particular in the western part of the country among Misseria tribe. School absence, depressive symptoms, embarrassment, social disturbances, and emotional disturbance present negative impact for sicklers. Therefore, an urgent call for improving the quality of life of sicklers is needed.
To examine the impact of SCA on the quality of life of school-age children affected by the disease from the perspective of three dimensions: psychological, social, and schooling.
This is a prospective, cross-sectional, observational study carried out over 2 weeks' period in April 2011 in Western Sudan, Gineana District. This study included 107 patients within the age group of 7-15 years with confirmed diagnosis of SCA in a steady state. A sickler with SCA who had hemoglobin genotype "SS" on hemoglobin electrophoresis without crises over the past 4 weeks was considered to be in steady state. Questionnaires designed by expert covering social and psychological aspects of the disease were filled by the authors.
Of 107 patients with confirmed diagnosis of SCA in steady state, 54.2% of them were male. About 17.8%, 29.6%, 23.4%, 48.6%, 16.8%, and 45.8% of the patients suffered from school absence, teasing, embarrassment due to bedwetting, embarrassment due to jaundice, failure to contribute to school activities such as sport, and depressive symptoms, respectively. Around 8.4% of the patients repeated classes. Divorce and anxiety among sicklers' families were found in 6.5% and 8.4%, respectively. Twenty-one (19.6%) families had less interest in social activities in the community.
Sickle cell disease has many social and psychological problems which need to be addressed. Enuresis, depressive symptoms, school absentees, and deterioration in school performance were the common problems encountered.
镰状细胞贫血（SCA）在苏丹普遍存在，尤其是在该国西部的米塞里亚部落中。缺课、抑郁症状、尴尬、社会干扰和情绪障碍对镰状细胞贫血患者产生负面影响。因此，迫切需要呼吁提高镰状细胞贫血患者的生活质量。
从心理、社会和学业三个维度探讨SCA对受该疾病影响的学龄儿童生活质量的影响。
这是一项前瞻性、横断面观察性研究，于2011年4月在苏丹西部的吉内亚纳区进行，为期2周。本研究纳入了107名年龄在7至15岁之间、确诊为处于稳定状态的SCA患者。血红蛋白电泳显示血红蛋白基因型为“SS”且在过去4周内无危机的镰状细胞贫血患者被认为处于稳定状态。作者填写了由专家设计的涵盖该疾病社会和心理方面的问卷。
在107名确诊为处于稳定状态的SCA患者中，54.2%为男性。分别有17.8%、29.6%、23.4%、48.6%、16.8%和45.8%的患者存在缺课、被取笑、因尿床感到尴尬、因黄疸感到尴尬、无法参与体育等学校活动以及出现抑郁症状。约8.4%的患者留级。镰状细胞贫血患者家庭中离婚和焦虑的比例分别为6.5%和8.4%。21个（19.6%）家庭对社区社交活动兴趣降低。
镰状细胞病存在许多需要解决的社会和心理问题。尿床、抑郁症状、缺课和学业成绩下降是常见问题。
