SICKLE CELL DISEASE REGISTRY AND PREVALENCE OF SICKLE CELL DISEASE IN KENYA
IS IT FEASIBLE?
BY
DR. CONSTANCE N.TENGE
SENIOR LECTURER/PAEDIATRICIAN
MOI UNIVERSITY-CHS-SOM
ContentsAbout sickle cell diseaseBurden of sickle cell diseasePublic health concern about SCD A National SCD control
programmeAcademic missionSCD registry and prevalence of
SCD in Kenya. Is it feasible?References
About sickle cell diseaseSickle cell Anaemia /
Drepanocytosis.Various cell genotypes or variants of
the sickle cell syndrome:
Hb AS (SCT) Hb SD- Punjab
Hb SS etc
Hb SCGenetic or hereditary blood disorderInheritance –Autosomal recessive Perpetuation of the sickle cell gene
can be controlled.
Percentage Chance
Normal Hb AA
Carrier Hb AS
Disease HB SS
Hb AA Hb AA 100 - -
Hb AA Hb AS 50 50 -
Hb AA Hb SS - 100 -
Hb AS HB AS 25 50 25
Hb AS HB SS - 50 50
Hb SS HB SS - - 100
Burden of sickle cell disease Millions of people throughout the world are affected. Ancestors lived in tropical and subtropical -
Subsaharan regions
–African, African-American Mediterranean (Italian, Sicilian, Greek), Middle East, East Indian, Caribbean ,Central or South American descent. 75-85% of cases occur in Africa. Affects up to 3% births. 6-9 million infants are born with SCD in Africa each
year. 10-40% carrier frequency across equatorial Africa
(Kenya 28-35%).
U.S.A U.S.A
1:5000 affected :90 000 cases : 2.5 million herogenous carriers.
FRANCE
1 in 2500 affected : 8750 carriers
UNITED KINGDOM
1 in 2000 births with SCD
Public Health concern Public health Implications of sickle cell disease
are significant :
-High morbidity and mortality (5% under five deaths)
- Socio-economic burden
No reliable data on burden and survival of patients with SCD on the African Continent.
Management of SCD in most African countries remains inadequate.
National SCD control programmes do not exist.
The need for a National Control Programme
Provide a comprehensive approach to prevention and management of SCD.
Simple affordable and accessible technology
that is feasible so as to benefit a large proportion of the community
Healthcare system able to provide basic requirements
EDUCATION and RESEARCH activities to provide evidence based practice and fill the knowledge gap.
Academic Mission EDUCATION
-Training of health care workers on prevention, diagnosis and management.
-Public Education and awareness on genetic risks and carrier detection before marriage or pregnancy
CARE
-Regional working group experts to coordinate activities and develop guidelines and work closely with primary care providers.
-Health care system that should provide the basics to patients( Pen V, Folate, Hydroxyurea )
- Carrier detection screening programme ( Sickling test )
- Neonatal screening
RESEARCH
-Research and surveillance
- Vital statistics reporting systems to guide changes in health policy.
-Planning and evaluating appropriate interventions.
SCD registry and prevalence of SCD
Aim To set up a sickle cell registry and determine the
prevalence of sickle cell disease in Kenya
Objectives To set up a sickle cell registry in Kenya To describe the socio- demographic
characteristics of patients with sickle cell disease in Kenya
To evaluate the care received by the patients To provide a data base for other studies on Sickle
Cell Disease
Constance N. Tenge 1, Wilson K. Bett 2, Mercy Mulaku 3, Meshack Liru 4 Festus M. Njuguna 5, Teresa C Lotodo 1 , Pamela A Were 5 , Sarah Awino 5, Juliana Otieno 6, Evallyne S Sikuku 7, Rachael Nyamae 4, Anne Wamae 4, Fatuma Abdalla8 , Walter Mwanda ,8
Mike English3.
AFFILIATIONS
1 . Moi University – College of Health Sciences( MU – CHS )
2 . Egerton University- School of Medicine ( EU – SOM )
3 . Kenya Medical Research Institute ( KEMRI )
4 . Ministry of Health – Government of Kenya ( MOH – GOK )
5 . Moi Teaching and Referral Hospital ( MTRH )
6 . Jaramogi Oginga Odinga Teaching and Referral Hospital ( JOOTRH )
7. Academic Model Providing Access To HealthCare ( AMPATH )
8. University of Nairobi - College of Health Sciences ( UON – CHS )
METHODS Preparation of relevant education material and
dissemination.
- Health care providers-conferences and workshops, CMEs. etc.
- Communities - baraza’s ,health camps etc. Gradual and target the different regions/ provinces
systematically
- Level 4,5 and 6 government hospitals
- Mission and private hospitals Identify the patients and profile them-use of
questionnaires
-demographic characteristics
-family information
-Mode of Diagnosis of SCD
-Medical information.
?? SCD Registry ?? Prevalence of SCD in Kenya. ?? National SCD control programme.
IS IT FEASIBLE? ??What role can you play?? Intellectual support(ideas)
Technical support(personnel)
Material support(funds )
Social support
There is no passion to be found playing small, in settling for a life that is less than the one you are capable of living
May our choices reflect our hopes, not our fears…
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