By Ijeoma Udeozo BSc Economics & Obiageli Nnodu BMBCH, FWACP, Professor of Hematology & Blood Transfusion, Director, Centre of Excellence for Sickle Cell Disease Research and Training, University of Abuja, (CESRTA) Abuja, Nigeria.
Sickle cell disease (SCD) is a major health concern in Nigeria and requires attention from all relevant stakeholders. A recent study was conducted aimed at assessing the understanding and knowledge of SCD among patients, healthcare providers, policymakers, patient support groups, and the media.
The study was carried out by The Sickle Pan Africa Research Consortium NigEria Network (SPARC-NEt), which comprises 25 healthcare centers across the six geopolitical zones of Nigeria with the hub at the Centre of Excellence for Sickle Cell Research and Training, University of Abuja (CESRTA). SPARC-NEt is a member of a larger consortium, the Sickle Pan African Research Consortium (SPARCo) comprising six sub-Saharan African countries: Tanzania, Ghana, Nigeria, Mali, Uganda, Zambia/Zimbabwe. The main objectives of SPARCO are to expand the existing sickle cell registry which currently has over 13,000 patients; establish and implement a uniform multi-level standard of healthcare for sub-Saharan Africa; strengthen existing skills, and undertake collaborative research in SCD in a sustainable manner.
The Perspective of Stakeholders
This study examined the perspectives of critical stakeholders, including patients; parents/caregivers; healthcare providers such as doctors, nurses, pharmacists, medical laboratory scientists, health records officers; andpolicymakers, on the challenges that patients face in accessing care and best practices that will improve healthcare services.
Their responses and the insights which were discovered by this study are insightful. Issues were raised and the participants were able to learn of evidence-based interventions which the general public might not be aware of.
Challenges of Accessing Care for SCD in Nigeria
SCD patients and their caregivers reported the high cost of care and challenges in accessing quality healthcare services. Delays in communication with healthcare providers, the absence of holistic consultation, and problems with healthcare service coordination were identified. Some attitudinal issues were also identified including the unfriendliness of healthcare providers and providers who were too much in a hurry, to the extent that they could not offer quality care. They also identified that SCD management tended to focus on physical health alone at the expense of social, mental and spiritual health of affected individuals. The study also found that the National Health Insurance Scheme was perceived as unfriendly by patients and caregivers.
Patients and caregivers observed that the cost of some of the drugs was high out of reach of patients.
This further supports the findings of a study on the association between level of poverty and SCD severity in a low-resource setting, which reported that rather than relying solely on medical procedures and use of sophisticated equipment, policies that will improve the socioeconomic status of people living in developing countries mayoffer far reaching influence on SCD complications (Bello-Manga et al.,2020).
Challenges of Providing Care for Warriors by Health Care Workers
On the part of the healthcare providers, they highlighted the importance of community engagement and health education in addressing the challenges of SCD. Previous studies had shown that patients with SCD exhibited poor health-seeking behaviour in Nigeria with many patients seeking care from non-hospital and unorthodox places including patent medicine vendors, herbal or traditional medicine shops and faith-based centres including prayer homes and other mind-body therapies in Nigeria.
The study revealed poor knowledge among stakeholders about measures to reduce the prevalence of SCD and that regular stakeholder engagement meetings are needed to improve their knowledge and perspectives. A small proportion knew about gene editing and selection, prenatal diagnosis and genetic counselling, roles of public awareness, sensitization and education. Stakeholders lacked knowledge about the role of community engagement and education in reducing the prevalence of SCD and alleviating SCD crises. These findings underscore the need for regular and robust stakeholder engagement meetings to improve knowledge and perspectives of stakeholders.
The Perspective of Policy Makers
Policymakers and hospital management staff agreed that poor integration of SCD services with other health and non-health services, as well as a lack ofresources and coordination among NGOs and researchers, were major issues that needed to be addressed.
What the Government Has Done
The government on its part has taken some measures towards providing quality healthcare services for SCD such as:
- development of the National Guideline for the Management and Control of SCD (The Federal Ministry of Health, 2014)
- establishment of 6 zonal Centres of Excellence for SCD equipped with HPLC for early detection and comprehensive care,
- creation of a National Desk for SCD at the Federal Ministry of Health (FMoH) and more.
Game Changing Strategies
The study highlights the urgent need for improved health literacy among patients with SCD in Nigeria, and for better access to quality healthcare services. The government, healthcare providers, and all relevant stakeholders must work together to address the challenges faced by patients with SCD to improve their quality of life. The sickle cell day-care service model should be encouraged as a means of improving access to care and reducing the length and cost of hospital stays. Dedicated specialist SCD centres, with well-trained multidisciplinary teams and better capacity building for healthcare providers and access to good blood transfusion services are immediate goals.
Regular stakeholder engagement meetings and increased advocacy efforts are needed to ensure that SCD receives the attention it deserves.
- Isa H, Okocha E, Adegoke SA, Nnebe-Agumadu U, Kuliya-Gwarzo A, Sopekan A, Ofakunrin AO, Ugwu N, Hassan A-A, Ohiaeri C, Madu A, Diaku-Akinwumi I, Ekwem L, Dogara LG, Okoh D, Jasini J, Girei A, Ekwere T, Okolo A, Kangiwa U, Lawson J, Chianumba R, Brown B, Akinola N, Nwegbu M and Nnodu O (2023) Strategies to improve healthcare services for patients with sickle cell disease in Nigeria: The perspectives of stakeholders. Front. Genet. 14:1052444. doi: 10.3389/fgene.2023.1052444
- Bello-Manga, H., Galadanci, A. A., Abdullahi, S., Ali, S., Jibir, B., Gambo, S., et al. (2020). Low educational level of head of household, as a proxy for poverty, is associated with severe anaemia among children with sickle cell disease living in a low-resource setting: Evidence from the SPRING trial. Br. J. Haematol. 190 (6), 939–944. doi:10.1111/bjh.16746
- The Federal Ministry of Health (2014). National guideline for the control and management of sickle cell disease. Nigeria: The Federal Ministry of Health. Available at: http://www.health.gov.ng/doc/SCDGuideline.pdf.