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

Karimeldin M A Salih, Karimeldin M A Salih

Abstract

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.

Keywords: Absence; anxiety; depression; school; sicklers.

Conflict of interest statement

There are no conflicts of interest.

References

    1. Atif Ahmed Saad, Ibrahim SH, Salih KMA. Oxyhemoglobin saturation in children with sickle cell anemia during steady state and crises using pulse oximetry in Omdurman Pediatric Hospital-Omdurman, Sudan (February-July 2015) IJMRPS. 2016;3:7–11.
    1. Behraman S, Richard E, Kilegman M. Nelson Text Book of Peadiatrics. 17th ed. Verginia: Elsevier; 2004. Sickle Cell Anemia: Epidemiology of Sickle Cell Disease; p. 1426.
    1. GBD 2013 mortality and causes of death, collaborators (17 December 2014). Global, regional, and national age – sex specifically – causes and cause specific mortality for 240 causes of death, 1990-2013: A systemic analysis for the global burden of disease study 2013. Available from:
    1. Ibrahim SH. Oxyhemoglobin Saturation In Childrenc With Sickle cell Anemia During Steady State and Crises Using Pulse Oximetry In Omdurman Pediatric Hospital – Omdurman, Sudan. February –July 2015), MD thesis. 2015:19–21. 86-96.
    1. Vella F. Sickling in the Western Sudan. Sudan Med J. 1964;3:16–20.
    1. Launder JR, Ibrahim SA. Sickling in South-West Kordofan. SMJ. 1970;8:207–14.
    1. Elderdery AY, Mohamed BA, Cooper AT, Knight G, Mills J. Tribal distribution of hemoglobinopathiesin Sudanese patient population. J Med Lab Diagn. 2011:31–7.
    1. Ogunfowora OB, Olanrewaju DM, Akenzua GI. A comparative study of academic achievement of children with sickle cell anaemia. J Natl Med Assoc. 2005;97:405–8.
    1. Taras H, Potts-Datema W. Chronic health conditions and student performance at school. J Sch Health. 2005;75:255–66.
    1. Moonie S, Sterling DA, Figgs LW, Castro M. The relationship between school absence, academic performance, and asthma status. J Sch Health. 2008;78:140–8.
    1. Ezenwosu OU, Emodi IJ, Ikefuna AN, Chukwu BF, Osuorah CD. Determinants of academic performance in children with sickle cell anaemia. BMC Pediatr. 2013;13:189.
    1. Burlew AK1, Evans R, Oler C. The impact of a child with sickle cell disease on family dynamics. Ann N Y Acad Sci. 1989;565:161–71.
    1. Anie KA, Egunjobi FE, Akinyanju OO. Psychosocial impact of sickle cell disorder: Perspectives from a Nigerian setting. Global Health. 2010;6:2.
    1. Grove J, Grove O, Michie C. The real effects of sickle cell disease on children and adolescents. West London Med J. 2013;6:11–7.
    1. Asnani MR. Stonog JH, Blooin M, editors. Sickle Cell Disease. International Encyclopedia for Rehabilitation. 2010. Available from: .
    1. Tunde MF. Aynimode. Psychological impact of sickle cell disease on mother of affected children sect at university of Ilorin. East Afr Med J. 2007;84:410–9.
    1. Awotua-Efebo O, Alikor EA, Nkanginieme KE. Malaria parasite density and splenic status by ultrasonography in stable sickle-cell anaemia (HbSS) children. Nig J Med. 2004;13:40–3.
    1. Bairwa M, Rajput M, Sachdeva S. Modified Kuppuswamy's socioeconomic scale: Social researcher should include updated income criteria, 2012. Indian J Community Med. 2013;38:185–6.
    1. Yang YM, Cepeda M, Price C, Shah A, Mankad V. Depression in children and adolescents with sickle-cell disease. Arch Pediatr Adolesc Med. 1994;148:457–60.
    1. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.
    1. Clark A, Fallowfield LJ. Quality of life measurement in patients with malignant disease. J Royal Soc Med. 1986;79:165–9.
    1. Bjelland I Dahl AA, Haug TT, Neckelmann D. The validity of the hospital anxiety and depression scale an updated literature review. J Psychosom Res. 2002;52:69–77.
    1. Olatunya OS, Oke OJ, Kuti BP, Ajayi IA, Olajuyin O, Omotosho-Olagoke O. Factors influencing the academic performance of children with sickle cell anaemia in Ekiti, South West Nigeria. J Trop Pediatr. 2017;64:67–74.
    1. Schatz J. Brief report: Academic attainment in children with sickle cell disease. J Pediatr Psychol. 2004;29:627–33.
    1. Day S, Chismark E. The cognitive and academic impact of sickle cell disease. J Sch Nurs. 2006;22:330–5.
    1. Dysona SM, Abuateyaa H, Atkinb K, Culleyc L, Dysond SE, Rowleye D Members of the sickle cell and education (SCED) group. Reported school experiences of young people living with sickle cell disorder in England. Br Edu Res J. 2010;36:125–42.
    1. Ohaeri JU, Shokunbi WA, Akindale KS, Dare LO. The psychosocial problems of sickle cell disease sufferers and their methods of coping. Soc Sci Med. 1995;40:955–60.
    1. Simon E, Long B, Koyfman A. Emergency medicine management of sickle cell disease complications: An evidence-based update. J Emerg Med. 2016;4:370–81.
    1. Novelli EM, Gladwin MT. Crises in sickle cell disease. Chest. 2016;149:1082–93.
    1. Schwartz LA, Radcliffe J, Barakat LP. Associates of school absenteeism in adolescents with sickle cell disease. Pediatr Blood Cancer. 2009;52:92–6.
    1. Burkhardt L, Lobitz S, Koustenis E, Rueckriegel SM, Hernáiz Driever P. Cognitive and fine motor deficits in a pediatric sickle cell disease cohort of mixed ethnic origin. Ann Hematol. 2017;96:199–213.
    1. Ozmert EN, Yurdakok K, Soysal S, Kulak-Kayikci ME, Belgin E, Ozmert E, et al. Relationship between physical, environmental and sociodemographic factors and school performance in primary school children. J Trop Paediatr. 2005;51:25–32.
    1. Asnanim MR, Quimby KR, Bennett NR, Francis DK. Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications. Cochrane Database Syst Rev. 2016;10:CD011175.
    1. Castro IPS, Viana MB. Cognitive profile of children with sickle cell anemia compared to healthy controls. J Pediatr (Rio J) 2018 doi: 10.1016/j.jped.2018.04.012.

Source: PubMed

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