The financial burden of sickle cell disease among parents of children with sickle cell disease in Lagos, Nigeria

Adeyinka Adeniran, Esther O. Oluwole, Omobola Y. Ojo


Background: Sickle cell disease is a genetic condition that affects millions of people globally. In view of this, the study aims at determining the financial burden of sickle cell disease among caregivers of children with sickle cell disease in Nigeria.

Methods: It was a descriptive cross sectional study and systematic sampling method was used in selecting 162 caregivers amongst the patients in the Lagos State University Teaching Hospital. Semi-structured questionnaires were used to collect data and analysed using SPSS version 22 software and Microsoft Excel 2007. Results were presented in frequency tables, chi-square to test association between categorical variables and the statistical significance level was set at p<0.05.

Results: The mean age of the caregivers was 34.3 years with an increase in frequency of hospitalization 39% amongst respondents and a cost of hospital bill was over thirty thousand naira (US$76.82). The reason given mostly by 77% of the respondents for non-usage of health insurance was that the enrolment’s premium was high and 53% of the caregivers took loan to treat their wards. Catastrophic healthcare expenditure was found among a quarter 21% of the respondents due to non-usage of health insurance. There was a statistical significance association between level of education and Catastrophic healthcare expenditure at p value <0.05.

Conclusions: Due to high level of financial burden on caregivers and family members, it will be an important step for the government to strengthen the health insurance scheme, intensify campaigns and subsidize costs of healthcare for these patients.


Sickle cell disease, Caregivers, Financial burden, Insurance scheme, Nigeria

Full Text:



Gamit C, Kantharia SL, Gamit S, Patni M, Parmar GKK. A study of knowledge, attitude and practice about sickle cell anaemia in patients with positive sickle cell status in Bardoli Taluka. Int J Med Sci Public Heal. 2014;3(3):365-68.

Akodu SO, Diaku-Akinwumi IN. No Age at diagnosis of sickle cell anaemia in Lagos, Nigeria. J Hematol Infect Dis. 2013;5(1):e201.

Gree S. Epidemiology of Sickle Cell Disease. In: Sickle Cell Disease. 2nd ed. New York: Oxford University Press; 1988:379-84.

Alhassan K. Nigeria ranks first in sickle cell disease burden worldwide with 40 million cases. Leadership Newspaper, 2014.

Moughalu CO. The burden of Sickle cell Disease to Parents of Sufferers in Nigeria. SOJ Genetic Science 2016. 3(1):1-5.

Sickle-cell anaemia report by the secretariat. Fifty ninth World health assembly. Available at: WHA59/A59_9-en.pdf. Accessed on 1 June 2020.

Edwards CL, Scales MT, Loughlin C. A Brief Review of the Pathophysiology, associated pain, and psychosocial issues in sickle cell disease. Int J of Behav Med. 2005:12(3):171-9.

Galadanci N, Wudil BJ, Balogun TM. Current sickle cell disease management practices in Nigeria. Int Health. 2013;6(1):23-8.

Ekwochi U, Osuorah DC, Ndu IK, Ezenwosu OU, Out-of-pocket cost of managing sick newborns in Enugu, Southeast Nigeria. Clinicoecon Outcomes Res. 2014;6:29-35.

Xu K, Evans DB, Kawabata K, Zeramdini R, Klavus JMC. Household catastrophic health expenditure: a multicountry analysis. Lancet. 2003;362:111-7.

Olatunya O, Ogundare EO, Fadare J, Oluwayemi IO, Agaja O, Adeyefa BAO. The financial burden of sickle cell disease on households in Ekiti, Southwest Nigeria. Clinicoeconomics and Outcomes Research. 2015;7:545-53.

Pereira SA, Brener S, Cardoso PA. Sickle cell disease: quality of life in patients with hemoglobin SS and SC disorders. Rev Bras Hematol Hemoter. 2013;35(5):325-31.

Adegoke SA, Kuteyi EA, Adegoke S. Psychosocial burden of sickle cell disease on the family, Nigeria. African Journal of Primary Health Care & Family Medicine. 2012;4(1):1-6.

Mvundura M, Amendah D, Kavanagh PL, Sprinz GS. Health care utilization and expenditures for privately and publicly insured children with Sickle Cell Disease in the United States. Pediatr Blood Cancer. 2009;53(4):642-46.

Amendah D, Mvundura M, Kavanagh PL, Sprinz PG GS. Sickle Cell Disease-related pediatric medical expenditures in the US. Am J Prev Med. 2010;38 (4):S550-6.

Kauf TL, Coates TD, Huazhi L, Mody-Patel N, Hartzema AG. The cost of health care for children and adults with sickle cell disease. Am J Hematol. 2009;84(6):323-7.

Nkem OV. Health Costs of Sickle Cell Disease Patients. Available at: https://mospace.umsystem. edu/xmlui/handle/10355/14298. Accessed on 20 June 2020.

Osibogun Akin. Health care delivery in Nigeria. Any progress? (ii)-all The Guardian Newspaper (Lagos). 6th August 2014.

Ohaeri JU. Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting. J Natl Med Assoc. 2002;94(12):1058-70.

Ohaeri JU. Attitudes and beliefs of relatives of patients with sickle cell disease. East Afr J Med. 2006;78(4):174-9.

Ievers CE, Brown RT, Lambert RG, Hsu EJ. Family functioning and social support in the adaptation of carers of children with sickle cell syndromes. J Paediatr Psychol. 2014;6(2):84-92.

Olatunya OS, Ogundare EO, Fadare JO. The financial burden of sickle cell disease on households in Ekiti, Southwest Nigeria. Clin Outcomes Res. 2015;7:545-53.

Ibukun Cleopatra KE. Household Catastrophic Health Expenditure: Evidence from Nigeria. Microeconomics and Macroeconomics. 2018;6(1):1-8.

Kauf TL, Coates TD, Huazhi L, Mody-Patel N HA. The cost of health care for children and adults with Sickle Cell Disease. Am J Hematol. 2009;84(6):323-27.

Onoka CA, Onwujekwe OE, Hanson K, Uzochukwu BS. Examining Catastrophic Health Expenditures at Variable Thresholds Using Household Consumption Expenditure Diaries. Trop Med Int Heal. 2011;16:1334-41.

Adegoke SA, Abioye-Kuteyi EA, Orji EO. The rate and cost of hospitalisation in children with sickle cell anaemia and its implications in a developing economy. Afr Health Sci. 2014;14(2):475-80.

Xu K, Evans DB, Kadama P. Understanding the impact of eliminat- ing user fees: utilization and catastrophic health expenditures in Uganda. Soc Sci Med. 2006;62:866-76.

Su TT, Kouyate BFS. Catastrophic health expenditure for health care in a low-income society: a study from Nouna District Burkina Faso. Bull World Heal Organ. 2006;84:21-7.

Chuma J MT. Catastrophic health care spending and impoverishment in Kenya. BMC Heal Serv Res. 2012;413.

Xu K, Evans DB, Carrin G, Aguilar-Rivera AM, Musgrave P, Evans T. Protecting Households from Catastrophic health spending. Health Aff J. 2007;26(4):972-83.

Ama PF, Anthony Kus, Felix AA. Factors contributing to low uptake and renewal of health insurance; a qualitative study in Ghana. Global Health Research and Policy. Biomed Central J. 2016;1(18):1-10.

Esther FA, Olalekan AU, John EA. A Systematic review of factors that affect uptake of community-based health insurance in low income and middle income countries. BMC Health Service Res. 2015;15:543.