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Sickle Cell Disease and Intervention preparedness among the Messiria people, Western Sudan.

Author(s) Dina Nagodra1, Oladele Akogun2.
Affiliation(s) 1Department of Voluntary Agencies, Khartoum State Ministry of Health, Omdurman, Sudan, 2Public Health, Parasitology, Common Heritage Foundation, Yola, Nigeria.
Country - ies of focus Sudan
Relevant to the conference tracks Social Determinants and Human Rights
Summary Introduction: An exploratory study of the knowledge and practices of the Messiria people about Sickle Cell Disease (SCD).
Methodology: Ethnographic tools and 401 structured household surveys.
Results: The cited prevalence of SCD is 28% with mortality of 20%. About 90% marry their patrilateral parallel cousin resulting in 48% bearing affected children. The communal treatment burden is US $217,138 per crisis. There is no policy regarding the SCD dilemma in Sudan. Almost 79% would accept prenuptial screening and 69% would decline a marriage offer with the prospective SCD spouse. Conclusion: There is a need to provide the foundation for planning a community-directed genetic counseling and prenuptial screening against SCD.
Background Sickle Cell Disease (SCD) is a very common health problem in Africa. It is associated with hemoglobin disorders which may be reduced by balancing disease management with prevention (or behavior change) programs. Promotion of pre-marital screening in areas where it is highly prevalent and discouraging marriages between sickle cell trait partners is a major prevention strategy for reducing the prevalence of the disease. Sickle Cell Anemia (SCA) is one of the major types of anemia, especially in Western Sudan where it is a major public health concern among the Messiria ethnic group. Parents of such children are resign to their fate and to the frequent hospital admissions with their attendant cost. Although an understanding of local knowledge, beliefs and practices is generally considered important, very little effort has been directed to this aspect of SCD management. The present study is to provide information on the local knowledge, attitude and practices about the SCD situation among the Messiria people of Western Sudan in order to understand the local perception of the problem and burden of the disease as well as preparedness to challenge it. Such understanding will be helpful in developing a locally appropriate and community-sustained intervention strategy.
Objectives The main objective of this study is to apply a mixed research methodology for documenting local perception of the burden of the disease and intervention-seeking practices about Sickle Cell Trait and Sickle Cell Disease in a typical Western Sudan community.
The specific objectives of the study are:
i. To describe and document community knowledge, attitude and practice about and towards the prevention and treatment of Sickle Cell Disease.
ii. To assess the cultural and biological burden of the disease (perceived, empirical, social and economic) at the household, community and government sphere of influence.
iii. To assess community preparedness to participate in preventive approaches towards alleviating the problem of SCD (adoption of preventive Hb electrophoresis technique; and denying marriages with Sickle Cell Trait Partner).
iv. To review and analyze current policy on SCD treatment, prevention and control in the State.
Methodology The study was carried out between June 2012 and February 2013 among eight Messiria communities in Southern Kordofan State, Western Sudan. A mixed methodology combining quantitative household survey with social research techniques was used. A thematic design matrix was developed after critical thinking and brainstorming. This approach would yield measurable indicators and variables, identify the source of information and verify the analysis technique for each of them. The study was designed in three stages with each stage preceding and providing information for the subsequent stage. Data tools prepared and pretested.The study comprised of:
1. Unstructured interviews with Health personnel and local opinion leaders about the problem.
2. Household surveys.
3. In-depth interviews with affected, non - affected, FG discussions
The Messiria population is around 507,000, which could be 4 times more but no documented data is available in Sudan. Therefore; 507,000 constituted the study population and the required sample size was 2488 which was equivalent to 401 households. Systematic stratified random sampling method was used. About 11 rohot (pools of water) camps were included in the study and 5 or 6 different camps may be found around each rahat (pool of water). Every camp around each rahat was included in the study and every odd number of household from Messiria Humr community in a camp was selected in the study. Informed Voluntary Consent was taken from every participant and Ethical Clearance was obtained from the University and Locality department.

Data were analysed in the following manner:
1. Selection and baseline data collection: through observation, in-depth interviews, focus group discussion and structured questionnaires analyzed.
2. Assessing community preparedness towards preventive techniques through structured questionnaires interviews analyzed.
3. Estimating disease burden physically, economically and socially and documenting a policy based on current strategy and anticipated outcomes through in-depth interviews and quantitative data collection and analysis.
These were then used for reviewing the local and government policy about the disease.
The qualitative data collected were transcribed appropriately and written notes in English and Arabic were compared for quality. A coding theme was prepared and analysed manually. Quantitative data was entered in Epidata and analysed through IBM SPSS. Analysis was guided by the research questions and objectives using the indicators.

Results Messiria community is divided into two main divisions, Humr and Zurug. Sickle Cell Anemia (SCA) is locally referred to as aldabas. The social worker perceives that the word aldabas means swelling which is the most obvious sign in children with SCA.
About 79% of Messiria Humr regarded aldabas (swelling of hands and feet commonly observed in children) as the most dreadful of the first three principal community health problems, affecting 49% of households with 5745 aldabas sufferers. The cited prevalence of aldabas is about 28% with male to female ratio of 1:3 (P value 0.000) and mortality of 20%; yet, no policy is established regarding SCD dilemma in Sudan. Nine of every 10 Messiria are married to their paternal uncle’s son or daughter. Culture imposes patrilateral parallel marriage as a means of preserving ancestral kinship and wealth of livestock within the family resulting in 48% bearing one or more children with aldabas. However, only 24% consider aldabas to be hereditary and 89% prefer Government health facilities for treatment. Records indicate that SCD accounted for 441 children hospital admissions per year. Estimation of the exact full cost of care and national economic burden due to SCD in Sudan is unfeasible as no such studies have been done and SCA children may be admitted more than once in a month. The burden of aldabas treatment on the Messiria community is US $217,138 per crisis with a mean of US $135 per admission compelling 27% to sacrifice their education. Care not directly related to SCD is unknown and quite higher if the additional contributions of sickle cell disease associated with reduced quality of life, uncompensated care, lost productivity and premature mortality is considered. Almost 79% would accept prenuptial screening to determine SCD status of their partner, and 69% willing would decline a marriage offer if the prospective spouse is confirmed to be inflicted with SCD or is a carrier.
"There is no any ongoing community effort or Government assistance regarding aldabas affected patients or children. The affected child often named SICKLER is neglected / ignored and never given adequate management and are repeatedly admitted, 3 to 4 times every month. It is very painful to lose 7 children in a family due to SCD. These are very precious babies and they are lost without even having understood the disease properly by the parents." Community Leader Interview.
Conclusion Sickle cell anemia disease or aldabas is regarded as the primary health problem among the Messiria people of Western Sudan with a perceived prevalence of 28% and a health burden of $135/ hospital admission (or communal burden of US$217,138). The disease is so well entrenched within the culture that there is a causation theory, beliefs and practices surrounding it. Although the people do not appreciate the association between the practice of patrilineal marriage and aldabas, 83% would accept prenuptial screening to determine their proposed spouse’ sickle cell status and 69% would decline a marriage offer to a prospective spouse with confirmed sickle cell disease or carrier. Healthy marriage Program (Premarital screening) introduced in 2004 in Saudi Arabia resulted in decreasing consanguineous marriage from being 89.6% in 2004 to 62% in 2007. The average cost of treating one person with Sickle cell Anemia in Sudan is US $2695 whereas screening with Hemoglobin Electrophoresis done prior to marriage may cost around US $7.30. Large differences in estimated approximate cost of treating and preventing SCD in Sudan should open up a way for Control and Prevention Programme for SCD similar to Healthy Marriage Programme. The fact that 92%, particularly youths and adults, were eager to participate in community intervention against the disease provides a unique opportunity to commence a community-driven approach to awareness-raising, prenuptial screening and counseling among the Messiria. Community directed intervention (CDI) approaches (made popular by the African programme for onchocerciasis control (APOC) and currently used for the increasing access to culturally appropriate intervention services) are most likely to change the current status of sickle cell disease among the Messiria if introduced at the earliest possibility. The CDI approach that has been made popular in the control of Malaria in nomads in Nigeria can be adopted to control SCD in nomads in Sudan.
In the absence of SCD Policy a Control or Prevention Programme (CDI) can be approached to optimise results with prolonged sustainability.