The impact of sickle cell anemia on the quality of life of sicklers at school age

BACKGROUND: 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. OBJECTIVES: 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. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSION: 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.