Method: All cleft teams in the UK at 17 hospitals collaborated in this grant funded (NIHR, RP-PG-0707-10034) project. Data was collected for 5 year old children born with complete UCLP between 01/04/2005 to 31/03/2007. Those children with developmental delay or syndrome which was sufficient to prevent them from co-operating with procedures for data collection were excluded. Standardized process and outcome data were collected for speech, audiology, somatic and facial growth, oral health, surgical and psychological outcomes. Patients also completed a research questionnaire on health/lifestyle and satisfaction with service
Result: The original target for recruitment to this study (250 subjects) was based on a similar research survey conducted in 1996. In the survey reported here, 257 children with complete UCLP were recruited from 347 eligible children. Five families declined to participate in the study and the other families were unable to attend the scheduled data collection clinics. From the children recruited, complete data sets were collected as follows; speech assessment 93%, speech recordings 90%, audiology assessment 87%, orthodontic assessment 93%, dental study casts 77%, oral health assessment 98%, surgery assessment 100%, medical photography 94%, psychological assessment 94%, height, weight and head circumference 99%. There was a disappointing (60%) return rate for the self-reported questionnaire.
Conclusion: A centralised cleft service has been developed in the UK since 1998. In collaboration with supportive cleft teams it has been possible to conduct an observational study with collection of outcome and process data. It is essential to be able to offer adequate support to the cleft teams in order to minimize the burden of administration and data collection.