- Developing and strengthening registration and surveillance systems
- Developing expertise and building capacity
- Strengthening research and studies on etiology, diagnosis, and prevention
- Promoting international cooperation
The proposed etiological factors of congenital anomalies include low income, as an indirect determinant of congenital anomalies. The high risk is due to poor access to basic health care and screening, lack of access to nutrition, and increased exposure to environmental endocrine disruptors, such as metals, pharmaceuticals, industrial ingredients, solvents, ingredients in household products, and pesticides.
Approximately 94% of the global burden of congenital anomalies are seen in lower and middle- income countries. There are 130 million live births globally in 2017, estimating the congenital anomaly called bladder exstrophy (lack of bladder closure) be around 2600 cases per year. In the US, 205 exstrophy patients are born among more than 9.4 million newborns, giving an incidence of exstrophy to be 2.15 per 100000 live births. In India there are 200 million live births, so 500 exstrophy births. Unfortunately, the infrastructure to care for these children in India is limited.
In the US, there are approximately 407 cases of exstrophy that were identified, with a median number of surgical closures being 1 case per year, when taking into account all hospitals, and more than five repairs in only high-volume centers.
When trying to assess how US surgeons could improve the situation in India through some model of collaboration, several factors needed to be taken into account. These include the high cost of American health care if the patient would have been brought to the US, the identification of patients and assessing needs, and to understand if the local physician in India would be able to manage the post-operative care of these patients, once they had been operated on.
In 2009 the first collaboration between a local hospital in Ahmedabad, India and several US hospitals began to try and create a long-term sustainable model to address the surgical burden of bladder exstrophy. In this model of cooperation, there is a commitment to the return of the same US team to the same institution in India every year to perform surgeries and follow-up on previous patients. The local hosting hospital must be able to manage the postoperative course and potential complications, and it needs to make sure patient compliance is high and rigorous follow-up is attainable. The US surgeons need to provide advanced surgical care while accelerating the surgical learning curve. The aim is to deliver outcomes, quality, and safety equivalent to those of high-income countries.
This novel and exciting cooperation have been published in JAMA surgery.1 This successful collaboration has led to a consistent visiting team of dedicated US surgeons, long-term commitment, competent host team, and leading gradually to optimal outcomes of the patients.
Presented by: Aseem Shukla, MD, Pediatrician, Children’s Hospital of Philadelphia United States
References:
1. Joshi RS et al. JAMA Surg 2017
Written By: Hanan Goldberg, MD, Urologic Oncology Fellow (SUO), University of Toronto, Princess Margaret Cancer Centre Twitter: @GoldbergHanan at the 38th Congress of the Society of International Urology - October 4- 7, 2018 - Seoul, South Korea