Health Education Programme: Sickle Cell Sickle Cell Disease in the Democratic Republic of the Democratic Republic of the Congo

Sickle cell disease is a group of inherited erythrocyte disorders resulting in abnormal haemoglobin production. It is a chronic pathology that can lead to numerous systemic complications, including organ dysfunction and infections caused by inadequate tissue perfusion and oxygenation [1]. It is also called Sickle Cell Disease (SCD). It is caused by a mutation at position 6 of the ß-chain of globin resulting in the substitution of glutamic acid for valine, thus producing Haemoglobin S (HbS) [2]. The disease is inherited when both parents carry a gene encoding an abnormal Haemoglobin (HbSS). It is the most severe type of sickle cell disease. Carriers are designated as type HbSA. Depending on the genes, there are several types, which differ in severity and prevalence [3].

In Africa, SCD-related mortality and morbidity is a major child health problem. Epidemiological studies are underdeveloped because they are generally carried outby health centres and only take into account for prevalence those hospitalised [4].

In the Democratic Republic of the Congo (DRC) it is estimated that 25-30% of the population are carriers (AS), and approximately 50,000 children a year are born with sickle cell disease, or 2% of newborns [5].

The population growth rate is still very high in many countries with high frequencies of sickle cell in many countries with high frequencies of HbS, resulting in the fact that without prenatal diagnosis and avoidance without prenatal diagnosis and avoidance strategies, allele frequencies will lead to a progressive increase in the number of progressive increase in the number of SS newborns [6]. At the 2005 UNESCO general conference in Paris, Senegal and the DRC declared sickle cell disease a public health priority and called for declared sickle cell disease as a public health priority and called for the development of an international preventive education programme. In addition, emphasised the importance of country involvement in research [7]. In 2010, the World Health Organisation (WHO) produced a strategy with recommendations on focused a strategy with recommendations on interventions focused on primary care, assessing the primary care, with an emphasis on improving the skills of health care workers in the comprehensive management of SCD. The activities developed should have emphasis on affordable, easy-to-use programmes and simple technology that reach a large proportion of the community [8].

Because of the high risk of infections that can lead to serious complications, it is important that the diagnosis, and therefore the complications, it is important that diagnosis, and therefore treatment, is made as early as possible. Among the most effective measures is neonatal screening for sickle cell anaemia, which immediate treatment of SS children and drastically reduces later complications [9].

The WHO recommends the use of this test for the reduction of infant mortality. Currently, primary prevention is to reduce marriages between carriers. In case of secondary prevention, the focus is on control measures to avoid CVD and on the education of parents, especially mothers who are often the primary caregivers [4].

The Democratic Republic of Congo (DRC) is a country located in the equatorial region of Africa. Equatorial region of Africa, and is the second largest country on the continent. The capital Kinshasa at the last census had between 14 and 17 million inhabitants [10]. In 2018, the World Bank estimated that approximately 73% of Congolese were living in poverty. The economic gap prevents families with limited resources from being able to afford treatment.

Limited resources from being able to afford treatment. Moreover, it has been shown that the socio-economic status of the family will depend on adherence to treatment. Since 2023, the national government has been financing a Pre-School Consultation (CPS) up to the age of 15 months, where vaccines will be administered in addition to a general check-up of each child. In addition, the DRC due to prevalence of SCD has launched a national programme to combat SCD. This programme aims to ensure access to prevention and treatment services. The problem is that it currently lacks practical implementation, resulting in patients having to continue to pay for all treatment. In addition, in the absence of a screening programme, patients are detected when they go to the emergency department for a vaso-occlusive crisis [11]. Nor is there any follow-up from primary care, complicating the correct therapeutic regimen.

The curative treatment is still bone marrow transplantation bone marrow transplantation, but it is expensive and complex to perform, making it inaccessible for developing countries. For this reason, the treatment is palliative in nature, aimed at preventing and treating the symptoms and sequelae of the crises and sequelae of crises.

As there is no cure for secondary prevention, the focus is on control measures to avoid OVC and on education of parents, especially mothers who are often the primary caregivers [4].

General objectives

The main objective of this health education programme is to improve the care of children with sickle cell disease in their homes. Therefore, we will focus on the mothers who are the primary caregivers, we will focus on mothers who are the primary caregivers.

Specific objectives

- To acquire knowledge about the aetiology and consequences of the disease.

- To improve therapeutic adherence and monitoring of the disease.

- To know and manage pharmacological and non-pharmacological treatment.

- To be able to detect emergency symptoms.

- Demonstrate autonomy, aptitudes and skills in the management of crises.

The target group for this programme would be mothers who have children with sickle cell disease between 1 and 5 years of age. Recruitment will be carried out in two different ways. The first is focused on the community through social workers who will locate and explain the project, and the other will be carried out by health professionals. It will be done by the doctors of the Monkole hospital who will discuss the project with the mothers during the check-ups and also to those who come to the emergency room because their child is suffering from a crisis. The nurses will also recruit mothers who come to the SCP. On all three occasions, the mothers will be screened for compliance with the criteria and the objectives of the project will be briefly explained.

The experience of a comprehensive care plan in underdeveloped countries is very important because it prolongs survival and improves the patient's quality of life. It also has the advantage of reducing the cost of care, since the treatment of complications is much more expensive than the measures necessary to prevent them.

The results found in Cuba in relation to the implementation of the programme show that the following are necessary:

1. Knowledge of the prevalence of carrier status in different population groups and in different parts of the country. 2.  1. Knowledge of the prevalence of carrier status in different population groups and in different parts of the country.
2. Development of the national programme for prenatal diagnosis of AD and CAH, which has led to a significant reduction in the birth of sick children.
3. Establishment of a specialised consultation and comprehensive care plan, which has mortality in children and adults has been reduced and their quality of life improved.
4. Treatment with hydroxyurea in AD, which increased Hb and Hb F and significantly decreased the frequency of CVOD, STA, transfusions and hospitalisation.  Significantly reduced the frequency of CVOD, STA, transfusions and hospitalisations.

The implementation of the National Sickle Cell Disease Patient Care Programme in Cuba has had a significant impact not only on survival, but also on the quality of life of Cuban patients with this disease. Currently, when assessing a person's state of health, in addition to their physical capacity, their context and mental health are also taken into account [12].

This programme will be developed specifically for caregiving mothers in small groups of no more than 10 people to facilitate the active participation of all caregivers.

At the beginning during the recruitment a specific quality of life questionnaire for sickle cell caregivers will be given. Throughout these sessions the aetiology of the disease and the clinical manifestations it produces in their children will be explained, the pharmacological and non-pharmacological treatment they require and how they can be how to examine them in the event of a crisis, so that they can be treated as early as possible. Early detection and early treatment of seizures drastically reduces the sequelae and mortality rate. It is therefore vital that mothers as primary caregivers are able to detect changes in their child's condition. The sessions are focused on enabling mothers to mothers to acquire cognitive, affective and psychomotor skills that will help them to help them to manage the sickle cell disease suffered by their children. On the first day, all mothers all the mothers will be given information material where they will write down all the concepts that will be developed during the sessions.

This programme consists of 4 informative talks and lasts 4 weeks, which are carried out in small groups, 10 people maximum, in order to be carried out in a dynamic way and favouring the participation and involvement of all the participants. In addition, a six-month follow-up meeting will be held to assess quality of life and reinforce knowledge.

• Week 1. Duration: 1 hour and 30 minutes Session 1: Presentation and introduction of the disease
• Week 2. Duration: 1h and 45 minutes Session 2: Treatment pharmacological and non-pharmacological
• Week 3. Duration: 1h and 30 minutes Session 3: Physical exploration
• Week 4. Duration: 2h Session 4: Detection and management of a crisis
• Week 5. Duration: 1h and 45 minutes Session 5: Review session at 6 months

The Sickle Cell Disease Specific Short Form Questionnaire (SBC-S) to assess how their quality of life is affected by the disease. It is useful for monitoring the evolution of perception in order to develop a more comprehensive care. The aim of this programme is to measure the effectiveness of this questionnaire [13].

Mortality in children under 5 years of age is 5% related to infections, so a correct indicator would be to reduce this mortality to 0% through health education.

Early diagnosis of the disease allows educating the family for early detection of infections, splenic sequestration crises and other clinical manifestations, initiating vaccination against Streptococus pneumoniae, Haemophilus influenzae type B and Neisseria meningitidis type C, prescribing prophylactic penicillin from 12 weeks of age, actions that have a proven impact on reducing mortality from complications of sickle cell disease, 6 as has been achieved in Cuba [13].

Sickle cell disease is a disease with a high prevalence in the Democratic Republic of Congo. Survival of SCD patients depends on the quality of healthcare systems .Access to treatment is rarely available in low-income developing countries with a high disease burden developing countries with low incomes and a high disease burden, resulting in the majority of children born with the disease dying in early life .As a disease whose symptoms begin as early as 5 months of age, in the youngest children responsibility falls on the mothers, who are the primary caregivers. Therefore, disease will improve the care they give to their children.

Health Education is a very economically sustainable tool with a high impact on health sustainable and with a high impact on society. In resource-poor countries. In resource-poor countries, where access to health care is limited, HPE is an element that empowering people by equipping them with knowledge. This programme aims to improve the quality of life of both mothers and children by promoting the acquisition of knowledge and skills.

In addition, the mothers in the target group, by meeting other women with the same problems, they will be able to form support groups among themselves. The community nurse is a fundamental branch of care for the elaboration and development of health programmes.

Given the extent of the public health problem in African countries, it is imperative to adopt a comprehensive approach to prevent and treat PA. The Cuban experience would undoubtedly be valuable. Currently, a significant part of the population affected by this disease does not receive medical care; therefore, health education should be implemented at the community level through primary health care systems to increase the population's awareness of the problem and prolong the survival of those affected.

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