Enhancing accessibility of patients with cleft lip/palate to healthcare services via a cleft birth registration system.

Background: Cleft lip/palate is a critical health problem in Thailand; with an incidence rate of 2.49/1,000 live births. To insure the best outcomes, surgery should be performed near the age of three months. However; during the years 1993-2007, only 39.7% of children with a cleft lip/palate underwent an operation by the age of 3-4 months and only 58.18% by the age of 9-12 months.

Objective: The purpose of the study is to determine if a cleft birth registry might facilitate timely and proper treatment for children with a cleft lip/palate.

Material And Method: A pilot cleft birth registry, developed by the Tawanchai Cleft Center, was made available to hospitals in Khon Kaen, Roi-et, Kalasin, and Mahasarakam provinces, Thailand. Ninety-eight personnel involved in the care of children with a cleft lip/palate were recruited from the participating hospitals to evaluate the system. Assigned to one offour focus groups, participants were asked to evaluate the pilot system in terms of satisfaction and benefit. Following the focus groups, those participants that were traditionally responsible for registration were asked to use the cleft birth registry to register any newborns with a cleft lip/palate that were encountered in the course of their duties. Records were examined to determine how many newborns were properly registered and for those registered, whether proper care was received in a timely manner

Results: With 78 focus group participants responding to the satisfaction survey, results indicated mostly high levels of satisfaction with 26 (33%) participants rating satisfaction as very good, 49 (63%) as good and 3 (4%) as fair No participant rated satisfaction below fair. Furthermore, a majority stated that the cleft birth registy would benefit patients and contribute to timely treatment. During two years of active use, one hundred and thirty-seven newborns with a cleft lip/palate were registered into this cleft birth registry. Subsequent examination showed that eighty-eight percent ofregistered cases received proper management in tertiary healthcare settings.

Conclusion: The fact that most of registered cases received proper care suggests that a cleft birth registry has the potential to facilitate timely and proper care. Howeve,; declining rates of registration over time is cause for concern. One opportunity for improvement in this regard might come from the establishment of an in-service trainingprogram to update knowledge pertaining to current standards of care and effective case management. Further improvements could also be made through better integration with existing referral systems. The researchers also noted that the existing electronic patient records (EPRs) in use by participating hospitals often lacked data structures suitable for effective care of patients with a cleft lip/palate. Thus, to foster useful integration, existing EPRs must also be extended to include data specific to cleft care/management.