EXECUTIVE SUMMARY - The Canadian Paediatric Surveillance Program

Initiated in 1996 by Health Canada and the Canadian Paediatric Society (CPS), the Canadian Paediatric Surveillance Program (CPSP) has grown from a pilot program monitoring three paediatric conditions to a mature surveillance system involving over 2350 reporting paediatricians/paediatric subspecialists and an annual average of 10 low frequency but high impact childhood disorders investigated to date. CPSP undertakes national surveillance of paediatric diseases/conditions that have a low incidence (< 1000 cases per year) but carry an increased risk of significant long-term disability and death as well as substantial economic costs to society.

A Steering Committee is responsible for reviewing research proposals according to scientific and public health criteria. Once a new condition has been accepted for surveillance, program participants, i.e. reporting paediatricians, receive a summary of the protocol and the case definition. They report all cases of the condition, as well as suspect and probable cases, seen within the previous month (or submit a nil report, if none was seen) on standard reporting forms. Those clinicians who report cases are then asked to provide more details by completing a follow- up questionnaire. Duplicate cases are identified during this follow-up process. Case ascertainment is verified through comparison with data from other programs, such as the Canadian Institute for Health Information.

By 2003, it was felt necessary to undertake an evaluation of the CPSP and its stated objectives. Consequently, an Expert Advisory Group (EAG) was established in the spring of that year to collaborate with the CPSP Working Group and Steering Committee on such a review and to make recommendations in light of the conclusions. The objectives of the review were as follows:

• to determine how well the CPSP is achieving its objectives;
• to assess the costs and effectiveness of the program in comparison with other similar surveillance programs;
• to assess how well the CPSP functions relative to CDC (U.S. Centers for Disease Control and Prevention) criteria for surveillance programs;
• to afford CPSP participants and researchers the opportunity to provide feedback;
• to determine whether the CPSP is meeting the needs of various target groups, including researchers and paediatricians;
• to assess the "public health worth" of the CPSP: Does the information it collects have the potential to change public health policies?
• to assess the effectiveness of the CPSP Steering Committee;
• to identify opportunities for improvement.

The evaluation comprised three components: establishment of an EAG to provide oversight; feedback from CPSP participants and others by means of anonymous questionnaires; and assessment of the CPSP using criteria for evaluating public health systems developed by the CDC.

The response rates to the survey questionnaires were 47% for CPSP participants, 45% for investigators, 71% for Steering Committee members and 46% for public health professionals. The survey data were used to assess how well the CPSP is meeting the needs of various target groups and to answer the questions posed by the CDC's guidelines on evaluation.

Overall, the EAG concluded that the CPSP has met its current objectives. It has initiated programs of national scientific significance and developed an effective surveillance system to monitor the health of Canadian children. Some important results over the past eight years include the improved reporting rate of acute flaccid paralysis; confirmation of the need for administration of intramuscular vitamin K to newborn babies for prevention of hemorrhagic disease, in accordance with CPS guidelines; establishment of Canadian incidence of Smith-Lemli-Opitz syndrome; and information on vitamin-D deficiency rickets and neonatal hyper-bilirubinemia to guide policy development. One-time surveys have been used to investigate the extent of injuries associated with baby walkers and lap belts. Surveillance results from the program have clear implications for treatment, prevention and public health measures. Of the public health professionals surveyed, 71% had used CPSP information to guide the planning, implementation and evaluation of programs. Of the investigators, 95% reported that their research project could not have been undertaken without national case ascertainment, and 68% felt that it would not have been possible without the CPSP.

The CPSP also has an important educational function. Paediatricians' awareness of the low frequency childhood disorders under surveillance has increased through participation in the program, and CPSP results are disseminated through various channels: highlights and articles are published in journals such as Paediatrics and Child Health and Canada Communicable Disease Report, bi-annual educational resource articles are circulated, an Annual Report is produced, and oral and poster presentations are made at scientific meetings. More than 60% of paediatricians responding to the survey reported that the study protocols and bi-annual resource articles were helpful, and clinicians who had previously reported a case to the CPSP were twice as likely to report that study-related materials had changed their clinical practice.

Not only does the CPSP provide a mechanism for national collaborative research (of the 11 studies monitored in 2002, six had co-investigators from different centres), it also actively promotes liaison with similar surveillance systems in other countries through the International Network of Paediatric Surveillance Units. Survey responses indicated that 65% of investigators believed that CPSP results provided information to allow partnership with researchers in other countries.

There is overwhelming evidence that the CPSP is a timely, cost-effective epidemiological tool that carries out a core Health Canada surveillance function and does so very successfully. It demonstrates high sensitivity and response rates, provides an invaluable tool in collaborative research, is recognized internationally as a high-quality program - and achieves all this on a small budget. It is a necessary program with no apparent alternative. The financial savings achieved through increased awareness and education, and thus earlier detection and treatment of patients, are likely to be considerable. An international comparison of its operating costs with those of other national surveillance programs proved impossible, as each unit functions differently.

Use of the CDC framework has demonstrated that the CPSP employs its resources wisely to maintain a surveillance/research tool that is clearly extremely useful, is simple, acceptable (e.g. 83% response rate for the year 2002) and sensitive (as shown through comparison with data from other sources). With regard to the program's influence on public health policy, 88% of public health professionals surveyed had heard of the program, and 86% of these were aware of its results; 32% used the results to evaluate public policy; 47% used them as a basis for future research; 70% for uses such as guiding immediate action; and 60% for continuing professional development.

In summary, the EAG concluded that the CPSP represents excellent value for money, an achievement that was seen as exceptional and unsurpassed by any comparable program known to the group. Furthermore, the CPSP represents an important collaborative tool for surveillance, research and policy development. It is a robust program, with a strong economical infrastructure, a well-established national collaborative network, a rapid real-time reporting rate and a high degree of sensitivity and predictive value.

Surveillance, per se, is not a therapeutic intervention. Surveillance is "knowledge transfer" in action. Information collected by the CPSP provides scientific evidence to advance clinical practices and guide public health actions. CPSP's legacy will be best remembered in the lives saved and the lives prolonged by clinical and social prevention/interventions derived from CPSP studies.