CORE Group Global Health Practitioner Conference Fall 2017

1. CORE GROUP FALL CONFERENCE
September 2017
Pamela Sheeran, MPA
Twitter @PWSmiletrain
Email: psheeran@smiletrain.org
Vice President
Comprehensive Cleft Care
Smile Train

2. Overview
1. Cleft
2. ST model
3. Cleft population
trends
4. Global programs
and local
innovations
5. What next – YOU

3. Cleft Lip And Palate – Incidence & Types
1 out of 700 children are born with a cleft lip and/or palate
170,000 annual cleft births across the developing world
Cleft lip and/or palate:
50% cleft lip and palate (M2:F1)
20% isolated cleft lip (M2:F1)
30% isolated cleft palate (F2:M1)
Each form can be in/complete:
• Unilateral
• Bilateral
• Cleft uvula
• Submucous cleft palate

4. Cleft Lip And Palate - Malnutrition
Why are cleft patients at risk of being malnourished?

5. Cleft Lip And Palate - Malnutrition
• Feeding Challenges

6. Cleft Lip And Palate - Malnutrition
• Increased risk for illness, morbidity
• Stigma and lack of local knowledge about cleft
• Lack of local nutrition programs
• Falling through the cracks of existing programs

7. Cleft Lip And Palate - Malnutrition
• 2016 Survey 84% ST partners report
malnutrition as cause of delayed surgery
• Delayed surgery leads to decrease in QoL
• Speech disability
• Hearing loss
• Occlusion issues – pain, sleep apnea, facial
disfigurement
Delayed cleft surgeries

8. 8
Smile Train – Economic Impact
The World Journal of Surgery recently published an independent study
on the Economic Valuation of the Global Burden of Cleft Disease
Averted by a Large Cleft Charity measuring the impact of Smile Train
cleft repair surgery over a ten-year period.

9. Smile Train Model - Focused
Since 1999, Smile Train has provided more than 1 million free cleft
surgeries for children across 85+ countries, both rural and urban settings.

10. Less than
25%
25-50%
50-75%
More than
75%
About 100%
Patient Follow-up a Reality,
2016 Partner Survey
70%
partners
report
follow-up
rates of
≥50%.
Smile Train Model – Sustainable & Scalable
Our sustainable model
provides training, funding and
resources to empower local
hospitals and medical
professionals to provide 100%-
free cleft surgery and
comprehensive cleft care in
their own communities.
Every 5 minutes a safe, efficient and
impactful Smile Train - supported surgery
is created.
0
20000
40000
60000
80000
100000
120000
140000
2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016
Annual Smile Train Surgeries
2001 - 2016

11. Smile Train Model – Trackable
Hosts more than a million medical
pre and post records for surgery,
speech, orthodontic and nutrition
treatments to track outcomes.
Records include important
assessment data, videos, audios,
photos and Xrays

12. No underwt
47%
Mild underwt
24%
Moderate
underwt
17%
Severe
underwt
12%
Underweight Prevalence by Severity
28%
Underwt
Results by gender, age
Weight for age z scores
Smile Train - Patients Data
Smile Train Patients = 28,577
Age 0 – 5 years at time of Surgery
Surgery Date 1/1/2015 – 8/1/2017
Guatemala, Indonesia, Nigeria, Pakistan

13. Smile Train - Patients Data
0%
10%
20%
30%
40%
50%
60%
70%
80%
<6mo 6-12mo 12-24mo 2-5yr
Underweight Prevalence by Age
Younger Smile Train Patients
more likely to be underweight
at time of surgery (>1 yr)
7,099 7,972 8,218 5288

14. Smile Train - Patients Data vs UNICEF Malnutrition Rates
12.60%
19.90% 19.40%
31.60%32.59%
20.36%
39.45%
35.67%
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
Guatemala Indonesia Nigeria Pakistan
Underweight Prevalence by Country, UNICEF & Smile Train
UNICEF Underwt Smile Train Underwt

15. Smile Train Global Standard for Nutrition Programs
2015 Pilots
Pakistan & Guatemala
2016 Finalized global standard
• Translated handouts & videos (20+ languages)
• Applications/reports to allow for local adaptation
• Nutrition Program Guidelines
2017 Scale
Program now in all regions & continuing to grow
Program requirements
- Local application including education
plan for caregivers
- Tracking of patient/caregiver outcomes
in online medical database

16. Local Nutrition Programs in Action - Americas
GUATEMALA
Rural communities
Lack of breastfeeding
• 2015 Pilot Project Site
• Provides one-on-one
support to about 100 –
150 babies a year
• 3 mth avg per patient
• Networks of mothers &
social workers to maintain
communication
• Grassroots awareness to
register new patients
• Caregiver education,
fortified formula and clear
instructions for follow up
apts all critical for success

17. Local Nutrition Programs in Action - Guatemala
17
Guatemala

18. Local Nutrition Programs in Action - Now scaled to include Colombia, Brazil, Peru
18

19. Local Nutrition Programs in Action - Africa
NIGERIA
Extreme stigma
Political instability
• 2017 Program in Kano (North)
• Teaches caregivers how to
prepare readily available food
and safely feed children
• Utilizes local relationships with
farmers (food donations) &
Nestle for formula donations
• Education on breastfeeding &
safe bottle feeding
incorporated into outreach
surgery screening programs

20. Local Nutrition Programs in Action - Nigeria

21. How YOU can get involved
• UNDERSTAND
• Cleft is common and not complicated
• Cleft is an anatomical disability that can cause issues feeding
• Malnutrition is a major barrier to cleft surgery
• FAMILIARIZE with RESOURCES
• Smile Train Feeding One Pager (20+ languages) & Video
• Breastfeeding techniques and innovations to assist with feeding
• Smile Train Grants (Guidelines, Reporting Forms)
• REFER
• Smile Train partners are credentialed, open and everywhere
• smiletrain.org/medical
• DATA
• Preliminary stages of mining Smile Train data
• Need more information on morbidity, mortality

22. Thank you!
Pamela Sheeran
psheearn@smiletrain.org
@PWsmiletrain
41 Madison Avenue, 28TH Floor
New York, NY 10010
1.800.932.9541
smiletrain.org

23. How YOU can get involved