A Rare International Dialogue (Saturday May 11, 2019) Grassroots Strategies Across the Globe Newborn screening and Comprehensive Care Program for Sickle Cell Disease in Ghana - Isaac Odame, The Hospital for Sick Children

1. Newborn Screening &
Comprehensive Care for Sickle
Cell Disease in KBTH
Isaac Odame
The Hospital for Sick Children
University of Toronto

2. Key elements of NBS pilot
• Establish NBS program for SCD in KBTH
• Test 4000 newborns using existing national NBS lab
• Track screen-positive newborns and enrol them in
dedicated SCD clinic
• Deliver evidence-based interventions

3. Key elements of NBS pilot
• Monitor impact of NBS program through longitudinal
data capture
• Disseminate results/outcomes of the program
• Determine enhancement needs of SCD Clinic to deliver
comprehensive care
• Plan phase 2 of NBS program building on lessons learned

4. The beginning
• Grant from Pfizer through SickKids Centre
for Global Child Health, enabled programme
to begin in KBTH
• Memorandum of Understanding signed in
February 2017
• Important to integrate into existing health
system framework

5. The preparations
• Oversight & Implementation Committees
formed
• Coordinator hired in April 2017
• Brainstorming on implementation strategy
• Training of public health nurses and midwives
– April 2017 (99 babies screened with 2 P-SCD)
• Official launch – June 27, 2017

6. 8 7
6 5
4 3
2 1
Family screening
completed
Confirmatory tests by age
6 months
Percentage enrolled in
database
Establishment of clinic
database
Percentage on penicillin
prophylaxis
Percentage enrolled in
clinic
Identification of babies
with P-SCD
Percentage of live births
screened
Performance indicators

7. Milestone I
Screen 4000 babies for sickle
cell disease using heel prick
analysis & isoelectric focusing

8. Demonstration phase
June 27, 2017 – July 24, 2018
Live births
in KBTH
10,211
Babies
screened
4527
Percentage
screened
44.3%

9. Live births vs. babies
screened: 2017
108
730
836
664
772
818
725
104
543
424
299
332
534
370

10. Live births vs. babies
screened: 2018
786
660
856
876 870
923
587
262
445
424
298
271
130
91

11. Milestone II
Determine numbers and
percentage of screen positive
babies

12. Screening Results
Samples
obtained
4527
Valid
samples
4514 13
unmatched
Results
obtained
4125
389
not received

13. Screening Results
• Possible-sickle cell disease (P-SCD)
= 74/4125 (1.8%)
FS = 37
(50%)
FSC = 37
(50%)

14. Milestone III
Determine numbers (and
percentage) of screen positive
babies enrolled in the newborn
SCD clinic

15. Screening Results
(P-SCD = 74)
• 5%
relocated
• 7%
unable
to track
• 14% clinic
no-shows
• 74%
Enrolled
in clinic
55 10
4 5

16. Milestone IV
Implement interventions for
screen positive babies
ü Penicillin prophylaxis
ü Parental education

17. Newborn follow-up clinic
• Dedicated clinics held every
month since Aug 2017
• All babies commenced on
penicillin prophylaxis
• Caregiver education workshop
held every 6 months

18. Main challenges
• Human Resource (esp. nursing)
• Screening & documentation
• Clinic follow-up
• Hospital discharge process
• Clinic logistics
• Maternal apprehension

19. Clinic logistics
• Lack of space
• Lack of basic equipment
• Clinic registration & National
health insurance
• Training of dedicated SCD clinic
nurses

20. Overcoming challenges in
next phase
• Recruitment of 2 clinic nurses
• Ensure accurate documentation
to facilitate tracking of screen
positive babies
• Innovative ways of delivering care
(e.g. within the community)

21. Overcoming challenges in
next phase
• Intensify antenatal clinic education
• Transcranial Doppler machine
purchased
• Training of clinic staff
• Ensure accurate documentation
• Clinic space

22. “Ready to Go?”
• Integrate screening into hospital
discharge process for newborns
• Comprehensive initiative including
− Establishment of breastfeeding
− Vitamin K injections
− Immunization
− Newborn examination

23. NBS for SCD in
KBTH- Phase 2

24. Goals for Next Phase
• Universal screening of all babies born
in KBTH; replication in primary care
facilities
• Optimize comprehensive clinical
care
• Nursing & parental education
• Primary stroke prevention; TCD testing
• Disease-modifying therapy: hydroxyurea
• Clinic database & data capture

25. Phase 2 plans
• Consolidate NBS at KBTH to
achieve universal coverage
• Enhancement of comprehensive
care for SCD
• Stroke prevention
• Expand use of hydroxyurea
therapy
• Personnel training and skills dev.

26. Phase 2 plans
• NBS program expansion to 2
Community Sites
• Partnership with Accra
Metropolitan Health Authority
• Longitudinal clinical data capture
• Disseminate results of outcomes-
conferences and publications

27. Who screens?
• Public health nurses vs.
midwives
• All midwives/nurses who look
after newborns should acquire
skill
• Ultimately, dedicated
newborn screening nursing
team
• Solution: Task-shifting to
Nurse Assistants

28. When & where should screening take place?
• Currently, all maternity wards and postnatal clinic designated
as screening sites; but some babies missed..
• Screening integrated into
hospital discharge process
• Creating a universal NBS system

29. How do we keep staff motivated?
• New initiatives come with extra responsibilities and
increased workload
• Consider innovative ways of motivating
staff and showing appreciation
• Staff personal development

30. How can quality of care be improved?
• No. of healthcare personnel in clinic, especially trained clinic
nurses
• Clinic space and facilities
• Ensure minimum standards of care
• Provide care packages for families
• Ensure good quality data

31. Thank You