Surveillance of Cerebral Palsy in Europe: Reference and Training Manual

Context and setting Cerebral palsy (CP), although the most common cause of physical disability in children in Europe, is relatively rare, with a birth prevalence of approximately two in 1000 live births. The Surveillance of Cerebral Palsy in Europe (SCPE) group, established in 1998, enables surveillance of the condition and collaborative research into its origins and risk factors. A first step was to agree inclusion criteria and the classification of neurological subtypes in order to enable data from similar cases from different centres to be pooled for further analysis. Overall 25 centres have contributed to the collaboration, and currently 19 centres in 11 countries contribute data. Why the idea was necessary Cerebral palsy is an umbrella term and sharing the agreed criteria and definitions with the contributing centres is challenging. Those involved in identifying and classifying cases at a local level are numerous, come from a range of clinical disciplines, have different levels of experience and training, and speak different languages. Video clips of children with and without CP had been useful in agreeing the classification criteria and therefore funding was sought to develop a computer-based CD-ROM on which clinical signs would be described in words (in the local language of the user), alongside video clips demonstrating the signs. The program includes an interactive element, whereby users can classify cases of unknown diagnosis and obtain feedback on the correct answer. What was done With the written informed consent of parents and guardians, the neurological examinations of selected children with CP or other neurological abnormalities were recorded on video. These recordings were edited and included alongside written descriptions of the SCPE classification criteria to form the Reference and Training Manual (R&TM). An English-language draft was piloted in 20 SCPE centres and feedback received from 200 participants. Based on this feedback, a final version of the R&TM was produced and translation into other languages begun. In July 2007, 6 months after the distribution of the completed R&TM, a semi-structured questionnaire was used to determine how each centre had used it. Evaluation of results and impact Thirteen of 24 SCPE centres approached (54%) returned the completed questionnaire, 12 of which reported using the R&TM. Eight centres used their own-language version. In total, over 150 copies of the manual had been distributed by centres. Eight centres distributed it to people directly associated with data collection, with five centres distributing it more widely. It was being used for demonstration purposes (two centres), for training data collection staff (seven centres), and for more general teaching of health care professionals (seven centres). In addition to the intended outcome of improved understanding of the SCPE definitions and criteria, centres reported that the R&TM had improved case ascertainment and enhanced communication between professionals. To date, the RT&M has been translated into 11 languages and over 1050 copies distributed worldwide. The R&TM has reached its target audience and beyond. Further work is now underway to assess whether its use has also improved the quality of data collected.