The Canadian Paediatric Surveillance Program (CPSP) commenced in 1996 and was patterned after its highly successful counterpart, the British Paediatric Surveillance Unit (BPSU), which was established in 1986. The CPSP is the largest of about 12 similar programs that form the International Network of Pediatric Surveillance Units. Through this network, the CPSP is in a unique position to participate with other paediatric groups in co-operative, international studies of rare or unusual conditions that are important to public health around the globe.
Surveillance requires the ongoing systematic collection, collation and analysis of health information, with the dissemination of data in a timely fashion to individuals who need to know the results. Because the purpose is to take action, capturing all cases is important to the surveillance of rare diseases or diseases that are nearing elimination. Capturing all cases requires active surveillance such as that provided through the CPSP; paediatricians are actively provided with a reminder each month about conditions that are under surveillance and asked to report whether cases were seen.
The strengths of such surveillance programs include the ability to collect timely information on rare conditions, the opportunity for investigators with a strong interest in a condition to follow-up (thus, improving the involvement and participation of reporting paediatricians to an extent that is not possible with passive systems) and the publication of annual reports that allow participants to see the value of their contributions.
While a Canadian version of the successful British program had been under consideration for some time, funding became available only as a result of the certification of the elimination of polio in Canada in 1994 and a requirement of the Pan American Health Organization for the ongoing surveillance of acute flaccid paralysis (AFP) in children younger than 15 years of age. Health Canada is to be commended for providing the core funding that allowed the establishment of the CPSP, as is the Canadian Paediatric Society for undertaking the job of conducting surveillance. Initially, three conditions (AFP, congenital rubella syndrome and neonatal group B streptococcus) were targeted for surveillance. Subsequently, 11 additional conditions were added to the surveillance list, and the surveillance of four studies has been completed.
The BPSU achieves complete reporting by more than 90% of paediatricians. With more than 2350 participants, the CPSP continually strives to improve the initial response rates of 83% and 86% that were achieved in 1999 and 1998, respectively. In 2000, participants voluntarily completed 91% of the more than 770 detailed case-specific questionnaires. The CPSP can confirm that close to 100% of cases in the community are being captured through various methods of case ascertainment such as a review of hospital discharge records.
The Canadian program has been successful in monitoring AFP, congenital rubella syndrome and subacute sclerosing panencephalitis. The Pan American Health Organization considers the background rate of AFP to be one case/100,000 children under 15 years of age, a rate that was achieved by the CPSP for the first time in 1999. Other diseases under surveillance have yielded the expected number of cases per year. Two conditions, group B streptococcus and neural tube defects, did not produce the expected results; however, the experience with these two conditions provided guidance to the CPSP’s Steering Committee for the evaluation of future study proposals.
Over the past five years, the CPSP has addressed several challenges, and emerged as a mature and enhanced surveillance tool. Participants are the heart of the program. Their buy-in of the essential values of surveillance is the starting point. Their ongoing support in taking time from hectic schedules to report cases and return the form, especially when no new cases were seen, is reminiscent of the qualities of a long distance runner and is worthy of applause. Increased emphasis on patient privacy and the enactment of strict privacy legislation in most jurisdictions presents two challenges: how to share information that is vital to the understanding of uncommon diseases, and, yet, develop measures to lessen the burden of such diseases while preserving an individual’s expected right to privacy from caregivers. All CPSP studies must have ethics committee approval; in the process, institutional ethics review committees have gradually developed a better understanding of surveillance.
The CPSP has been a true success story, as is illustrated in the present issue of Paediatrics & Child Health in a variety of papers that confirm the successes of immunization programs, and stress the importance of genetic screening and the study of emerging infections and conditions. The CPSP program is an excellent example of collaboration among clinicians, researchers and public health physicians for the enhancement of the health of Canadian children and youth. Canadian paediatricians, the Canadian Paediatric Society and Health Canada may take pride in this achievement and, hopefully, look forward to many more years of success. I encourage you to read the other papers in this issue that highlight the depth and breadth of the program.