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Adriana Dobrzycka Feb. 25, 2019

Hridyam as a Successful Model of Public-Private Partnership for Addressing Complex Newborn and Childhood Disease. Adriana Dobrzycka Feb. 25, 2019. Presentation Overview. Global Burden of CHD About Children’s HeartLink India Overview Burden of CHD Needs vs. Reality

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Adriana Dobrzycka Feb. 25, 2019

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  1. Hridyam as a Successful Model of Public-Private Partnership for Addressing Complex Newborn and Childhood Disease Adriana Dobrzycka Feb. 25, 2019

  2. Presentation Overview • Global Burden of CHD • About Children’s HeartLink • India Overview • Burden of CHD • Needs vs. Reality • Children’s HeartLink and Government of Kerala Partnership • Kerala CHD care before partnership • Steps for Improving Access to Care in Kerala • Planning and Implementation • Accomplishments • Next Steps

  3. Global Burden of Disease • Congenital heart disease (CHD) is the most common birth defect in the world 1 1 in 100 babies are born with CHD; that’s one baby every 15 minutes 1 1 in 4 will need surgery or other intervention within their first year of life just to survive 2 Only 1 in 10 has quality access to lifesaving care 1 1. Children’s HeartLink, The Invisible Child 2. Oster, M. E., Lee, K. A., Honein, M. A., Riehle-Colarusso, T., Shin, M., & Correa, A. (2013). Temporal trends in survival among infants with critical congenital heart defects. Pediatrics, 131(5), e1502-1508. http://dx.doi.org/10.1542/peds.2012-3435 

  4. Our Vision Children around the world have access to high-quality heart care. Our Mission To save the lives of children with heart disease, we partner with organizations to train medical teams, provide education and transform health care in underserved parts of the world.

  5. CHL’s Approach to Addressing Need Components of our Strategy • Shortage of trained medical professionals on all levels • Shortage of centers that deliver CHD care • Poor outcome, high mortality/morbidity • No coordinated national plans to address CHD • Unequal distribution of resources Awareness

  6. Where We Work • 5 Centers of Excellence • 11 Partners in Training • In 2018: • 1,896 Local providers trained • $ 760,000 Medical Volunteer Donated Time • 135,000+ Children Saved

  7. CHL in India • COE: Amrita Institute of Medical Sciences, (AIMS), Kochi • COE: Narayana Health, Bangalore • Post Graduate Institute of Medical Education and Research (PGIMER), Chandigarh • Rabindranath Tagore International Institute of Cardiac Sciences (RTIICS), Kolkata • G. Kuppuswamy Naidu Memorial Hospital (GKNM), Coimbatore

  8. http://theinvisiblechild.childrensheartlink.org/

  9. The Way forward Increase number of Children’s HeartLink Centers of Excellence (COEs) Macro Impact: Increase regional access to quality pediatric cardiac care Global Thought Leadership

  10. CHD Care in India: What’s Needed vs. What’s Available • Every year, 240,000 children are born with CHD, with 48,000 needing an operation • One center/ 5-10 million*: At least 200-1,000 pediatric heart centers doing 100-500 infants annually • Center distribution • Staffing • In 2016-2017 27,000 CHD patients underwent cardiac surgery: 9,700 were infants. 25% of need • Pediatric Heart Centers: about 63; 10 of these are high volume • North vs. South of India • Shortage of surgeons, cardiologists, nurses • Davis JT, Allen HD, Powers JD, Cohen DM. Population requirements for capitation planning in pediatric cardiac surgery. Arch PediatrAdolesc Med 1996;150:257-9. • Saxena, A. Congenital Heart Disease in India: Ac Status Report. Indian Pediatrics 2018: vol 55. 1075-1082

  11. Pediatric Cardiac Centers in India: 2013 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Credit; Dr. R. Krishna Kumar, AIMS

  12. CHD Care in Kerala before 2017 Private Pediatric Cardiac Program Public Pediatric Cardiac Program New Public Pediatric Cardiac

  13. Kerala Infant Mortality Rate

  14. Causes of Infant Mortality in Kerala IAP Study, 2013

  15. Steps to Improving Access to Care in Kerala, State-wide • Scaling Children’s HeartLink efforts in Kerala • Low IMR • Government interested in reducing IMR • CHL Center of Excellence in the region: Amrita Institute of Medical Sciences • Government priorities: • Reduce infant mortality rate (IMR) from 12 to 8 by 2020 by reducing mortality and morbidity from congenital heart to achieve Sustainable Development Goals • Providers discussions (March 2016) • Making the case for state-wide approach • Data analysis (demand vs. supply) • Cost of intervention vs. cost of staying the course • Identify possible solutions

  16. Steps to Improving Access to Care, continued • Needs Assessment (Fall 2016) of Patient Care Continuum • GOK and CHL Partnership Goal: Enhance the public health system to provide early detection; diagnosis, referral; and improved treatment options • Community Capacity Building • Tool to identify, register, prioritize cases and referral for treatment • Build system efficiencies: maximize impact of Pediatric Heart Centers • Screening • Prenatal • Neonatal • Childhood • Diagnosis • Referral • Prioritization • Safe transportation • Treatment • Tertiary Centers • Follow-up • Primary care providers

  17. Recognition Diagnosis and Prioritization Stabilization and Transport 1. Newborn screening: Pulse Oximetry + Physical Examination a) in hospital b) post discharge Training of delivery center staff/JPHNs 2. Screening in infancy & beyond -Periodic CMEs on CHDs for Pediatricians. Referral Treatment Follow-Up Expand (capacity) and improve (quality) existing centers (SCTIMS, GMC Kottayam). Utilize private centers offering quality care (AIMS, MIMS, Lisie). Develop new regionalized centers based on tiered system of care. Prioritize referral & care – (critical CHD/ Significant CHD (non-critical)/Insignificant CHD). Safe transport (Public - Private – Partnership). Training in pediatric echocardiography. OPPORTUNITIES Computerized database of cases with status updates. Regionalized follow-up Funding and creating awareness regarding these resources. Safe transport (Public - Private – Partnership). Interventional Cardiology Workshops focusing on case selection (AIMS). Prenatal screening -OBGs (Fetal Echo Training) Lack of CHD related expertise among primary caregivers and family No systematic plan for integrated primary care follow-up Lack of awareness and training Lack of safe transportation Few centers Lack of awareness; Poor access to care (limited tertiary care facilities, waiting lists & financial burden) Lack of safe transportation Lack of expertise BARRIERS Lack of expertise Danger of over reliance on cath procedures & using them as a substitute for surgery Poor access to tertiary care centers There is currently no formalized system to quickly refer the patient to the closest and most appropriate tertiary center Lack of safe transportation *"There is little point to expanded screening unless and until there is a coordinated mechanism for referral to an appropriate cardiac center, and the means for a timely transport of the patient." No infant should be more than 2 hours from lifesaving care. *"Pulse oximetry as a screening tool depends on appropriate equipment, personnel training, a uniform protocol, and the prompt availability of accurate echocardiography to follow up on positive tests."  

  18. Planning and Implementation Phase • Joint planning to build momentum for creating capacity for: • Community Capacity Building: knowledge transfer • Registry • Screening (prenatal and newborn) and Equipment • Building system efficiencies (included developing new pediatric heart centers) • Patient education (PEDI) • Stabilization & Transport • Knowledge Transfer: • Managing multiple audiences and different types of activities • Identify audience • Identify faculty • Logistics • Evaluating impact

  19. Accomplishments so far… • Empanelment of public and private centers • Hridyam launched (August 2017) • Screening • Registration • Diagnosis and Prioritization • Referral • Treatment and follow up

  20. Accomplishments, Continued • Community Capacity Building: established demand for trainings: • Prenatal screening: 7 trainings; 603 OBGYNs/Radiologists trained • Newborn Screening: 2 trainings • Pediatricians training: 2 trainings; 262 trained • Parent Education Discharge Instructions (PEDI) • Stabilization & Transportation • eLearning for pediatricians launched: Feb. 2019 • Newborn screening launch: May 2018 • Resources: Fetal Echo Booklet; Pulse Ox Screening Poster and Booklet • Hospital capacity building • Advised on expanding capacity of current centers • Advised development of new pediatric heart center

  21. Next Steps • Improve quality and access • Scale Prenatal and Newborn Screenings • Streamline referral process • Ensure safe and timely transport • Continue training (fetal echo, pediatricians, newborn screening, interventional cardiology) • Hospital capacity building • Continue enhancing quality of existing centers • Plan for additional pediatric cardiac centers • Patient engagement • Monitor quality • Engage Frontline Health Workers • Continued funding

  22. Questions?

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