Thailand is considered to have one of the highest incidences of cleft lip and palate in the world. Yet, no studies or databases regarding the geographical incidence cleft lip and palate currently exists.
TF recently decided to support Tawanchai Foundation’s initiative to implement cleft lip and palate registration in 75 hospitals. The registry would like to establish a system that will allow government officials to see the scope of the incidence of cleft lip and palate. It will also help medical staff to collect statistics for research and ensure that timely surgery and on-going rehabilitation is provided.
This project will target four provinces in Northeast Thailand: Roi Et, Khon Kaen, Mahasarakham, and Kalasin. The four provinces targeted in this pilot have an estimated incidence of children with cleft lip/palate of about 195 newborns per year. However, if current trends were to hold, it is estimated that only 13.94% of these newborns will receive treatment in the Tawanchai Cleft Center. Even for those who are fortunate enough to receive treatment, further care is marked by a lack of professionals in various sciences working together, which results in symptoms being treated as an isolated problem, other symptoms going untreated and some receiving unnecessary overlapping treatment.
Even after surgery, children with cleft lip and palate will face various physiological and psychosocial difficulties over the long term that can negatively impact quality of life. Therefore, treatment must cover health promotion, nursing care, restoration of capabilities, as well as the cosmetic, functional and psychosocial states. The grand challenge is to effectively coordinate the actions of multidisciplinary teams that should include, at a minimum, dentists, nurses, speech pathologists, psychiatrists and social workers. The lack of reliable incidence data, providing treatment later than recommended and a lack of multidisciplinary approach are barriers to care.
The Tawanchai Cleft Center has already received limited initial funding from the National Health Security Office 7 to provide the database for registration and parent books for cleft lip/palate care. TF’s support will allow patients registered in the system will be followed until at least 2 years of age to evaluate the quality of treatment outcomes.
If the implementations in these provinces are effective, the program can be adapted to other regions in Thailand as well as other developing countries in the world and disseminated as a model for management of other chronic diseases.