Download 7th International Conference on Birth Defects and Disabilities in the

Focus of Surgical Care of Ugandan Children
Hospital-based Birth Defects
Surveillance in Kampala,
Uganda
Linda Barlow-Mosha, MD MPH
On behalf of the BD Surveillance Team
Makerere University- Johns Hopkins University Research Collaboration
Kampala-Uganda
28 Sep 2015
Metropole Hotel
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Protocol Team
MUJHU
Philippa Musoke, MBChB, Ph.D. – Principal investigator
Linda Barlow-Mosha, M.D., MPH
Mulago Hospital
Josephat Byamugisha, MBChB, MMed (OBS &GYN) PhD, Head of Department
Christine Biryabarema, MBChB, MMed, Senior consultant Obstetrician & Gyanecologist
Evelyn Nabunya, MBChB, MMed, Clinical Head, Dept. of Obstetrics and Gynaecology
Jolly Nankunda, MBChB, MMed, Mulago Hospital, Uganda
CDC
Dhelia Williamson, Ph.D.
Diana Valencia, Ph.D
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Background
• Globally 7.9 million children born with birth defects (BD)
annually
• 3.3 million die annually from birth defects
• Limited data on the prevalence of birth defects in sub-Saharan
Africa
• Purpose of this study:
• To establish a hospital-based birth defect surveillance system
• To conduct a nested case-control study to describe maternal risk factors
associated with birth defects
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Background
• In Uganda, HIV prevalence is 8% among pregnant women
• Initially EFV was not indicated for use in the first trimester
– An increase risk of neural tube defects (NTD) was reported in animal
studies and a few human case reports
• Preferred Antiretroviral regimen – EFV/TDF/XTC (Option B+)
– In 2012, panel of experts reviewed evidence of safety for EFV in early pregnancy
– Based on Antiretroviral Program Registry from developed countries and passively
reported by physicians as well as a few studies
– No increase risk of BD compared to other antiretrovirals
– Need for more evidence of safety in developing countries with large numbers of
women on EFV
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Why Uganda?
• Limited data on prevalence of birth defects in Uganda
– Data that are available come from small studies* and March of Dimes
Global Report on BD 2006
– Prevalence ranges from 20 to 60 per 1000 live births*
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•
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124,000 (7%)** of pregnant women in ANC are HIV positive
70% of HIV+ mothers received ARVs (including Option B+)**
In preparation facilities identified with large number of deliveries
Available resources – number of deliveries, staffing, hospital
records/documentation, data collection, and patient flow
*Simpkiss,1961; Ndibazza,2011; Ochieng,2011; **; HMIS,2013
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Study Design
• Establish Hospital-based surveillance system
– 4 participating hospitals in Kampala (48,000 births/ year)
• Mulago, Mengo, Nsambya and Rubaga Hospitals
• Represents 75% of births occurring in hospitals within Kampala
• Case-control study to determine if maternal use of ART (Option
B+ regimen) or cotrimoxazole (concomitant medication) during
early pregnancy is associated with higher risk of BD
– Prospective enrollment: 1 case: 3 controls, matched by birth hospital
– Duration 4 years (total of approximately 192,000 births)
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Design
• Selected 10 major external birth defects
– NTD (Spina bifida with and without hydrocephalus, encephalocoele,
anencephaly)
– Abdominal wall defects (Gastroschisis, Omphalocele)
– Anotia/ Anopthalmia
– Cleft lip/ and palate
– Hypospadius
– Talipes Equinovarus/ other Limb deficiencies
• Active case ascertainment
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Neural Tube Defects
8
Abdominal wall defects
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Eye Defects - Anopthalmia
Cryptophthalmos
Coloboma
10
Ear Defects - Anotia/Microtia
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Cleft Lip and Palate
12
Talipes Equinovarus
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Limb Deficiencies
Complete or partial absence of distal structures of a limb in a transverse plane at
the point where the deficiency begins, with proximal structures being essentially
intact
Congenital complete absence of upper limbs/Amelia of
upper limb
(Q71.0)
Congenital absence
of both forearm and hand
(Q71.2)
Congenital complete absence of lower
limb/Amelia of lower limb (Q72.0)
Source: CDC-Beijing Medical University collaborative project
Limb deficiencies
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Project Significance
• First birth defects surveillance program in Uganda
• Provides current data on baseline prevalence of birth defects in
Uganda
• Identify potential risks associated with HIV treatment
– Population reassurance and potential better ART adherence/compliance
• Evaluate effects of other medications on occurrence of adverse
birth outcomes (i.e., malaria, TB, and other new HIV drugs)
• Utilize findings to guide prevention, service provision, inform
further studies, and expand surveillance to include other
disorders present at birth
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Lessons Learned so far…..
• Need to ensure sustainability beyond funding time frame
• Secure MOH’s interest in birth defects surveillance for the
country
– Involve in training/ stakeholder’s meetings/ birth defects awareness
campaign
• Key elements - Piloting/Continuous improvement/ Patience
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Lessons Learned
• Greatest challenges and how they were addressed
– Examination of large number of deliveries in busy hospitals
• Hired surveillance midwives
– Access to medical records/documentation
• Use of electronic data collection and real time quality control of data
– Provision of referral services for affected children
• Create referral list for service provider
• Establish a link to pediatric surgeon to provide services for
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Update of Birth Defects Surveillance
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•
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Piloting in Upper and Lower Mulago initiated in August 2015
Surveillance launched in Upper Mulago 20 August 2015
Lower Mulago to be launched in October 2015
Planned Stakeholder Meeting early 2016
Hospitals will receive quarterly updates on progress/ activties
of the surveillance
• Present preliminary data from 2 months of piloting and
surveillance activities
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Update on Birth Defects Piloting/Surveillance
Type of Neural tube defects
Spina bifida with hydrocephalus
Spina bifida without hydrocephalus
Encephalocoele
Anencephaly
Total
Number
4
1
2
4
11
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Update on Birth Defects Piloting/Surveillance
Other Types of Birth Defects
Gastroschisis
Eye & Ear defects
Limb reduction defects
Talipes Equinovarus
Knee joint malformations
Orofacial clefts
Hypospadias
Conjoined twins
Amniotic band sequences
Total
Number
2
3
2
8
3
1
2
1
1
23
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Mwebale Nnyo
Thank you
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