Canadian Paediatric Surveillance Program - 2003 Results

Participant workload

Program evaluation respondents indicated that the monthly reporting system is simple and 80% felt that the follow-up study questionnaires were easy to complete. As only non-nominal, non-identifiable data is collected through the CPSP, 90% of those who reported a case did not hesitate to provide clinical information. Even with a total of 583 reported cases in 2003, the majority of participants (1,975 of 2,335, 84.6%) had 'nil' cases to report. The importance of zero reporting must however be re-emphasized. As studies come and go, the workload shifts to different subspecialties. The number of reported cases was higher this year due to the neonatal hyperbilirubinemia and vitamin D deficiency rickets studies and the inclusion of the early-onset eating disorders study to the program.

Figure 3 illustrates the number of cases reported by respondents in 2003. It shows that most participants (84.6%) had no cases to report and checked off the 'nothing to report' box each month. In fact, 11.1% of participants reported one case and 3.2% reported two or three cases. Only 25 participants (1.1%) completed four or more questionnaires. It is interesting to note that 125 of the 583 reported cases were duplicates, validating CPSP ascertainment. The CPSP is extremely grateful

that the majority of participants faithfully complete the detailed questionnaires subsequent to reporting cases. This demonstrates that they appreciate the enormous value of the scientific data collected. On their part, the Steering Committee continues to insist on short, precise and pertinent detailed questionnaires.

One-time survey questions

The CPSP is available as an inexpensive tool to survey participants on a one-time-basis in order to identify the prevalence of a problem or to answer a specific question. Once approved by the CPSP Steering Committee, the one-time survey question is sent to all participants with a monthly initial reporting form. Once collected, results are forwarded to the investigator for data analysis.

Results of the 2003 one-time survey question on lap-belt syndrome are found on page 49.

TABLE 2 Criteria considered for inclusion of studies
Rarity	Disorders of such low incidence or prevalence that national ascertainment of cases is needed (less than 1,000 cases a year).
Public health importance	Clearly addressing a public or paediatric health issue.
Scientific importance	Demonstrated scientific interest and importance.
Uniqueness	Proposal must demonstrate a clear need for data on a condition or disorder for which there is only limited information and for which surveillance is the most appropriate means of collecting the data.
Quality of proposal	Proposal must state clear and achievable objectives, practicability, patient confidentiality, adequate resources, clear questionnaire and method of evaluation.
Workload of paediatricians	Steering Committee must be convinced that reporting will not make excessive additional demands on the workload of paediatricians.
Priority will be given to diseases that are not currently notifiable or, if notifiable, have sufficient indication of under-notification. Investigators are expected to demonstrate that potential funding is available.

 

Investigators' corner

The CPSP can offer investigators the use of a timely, active surveillance system to increase awareness of childhood disorders that are high in disability, morbidity, mortality and economic costs to society, despite their low frequency. The CPSP provides an innovative means of identifying and obtaining data on low-frequency diseases and conditions from approximately 2,335 participants. The program is committed to a case ascertainment rate of over 90% and boasts a high response rate of 96% on detailed reports (Table 1), due to follow-up reminders to participants who have not responded. The CPSP offers an opportunity for international collaboration with other paediatric surveillance

units worldwide and a chance to make a difference in the health and well-being of Canadian children and youth.

Individual researchers are encouraged to submit proposals for new studies once they have reviewed the Criteria considered for inclusion of studies

TABLE 3 Format for submission

Proposals for new studies should include: name of principal author brief abstract of proposal proposed starting date proposed duration question(s) to be addressed by study statement of justification, including how the information could be used case definition expected number of cases availability of ethical approval (state source of approval) funding arrangements identification of projected date for completion of analysis and submission for publication

(Table 2) and the Format for submission (Table 3). The Steering Committee reviews submissions at its spring and fall meetings, giving preference to studies that have either strong public health importance or could not be undertaken any other way. Studies must receive ethical approval and have funding in place before final acceptance to the program.

The CPSP is pleased to see established faculty members mentoring young researchers with their study proposals.

As previously mentioned in the Overview section, the CPSP is available to investigators as a cost-effective tool to survey participants on a one-time basis in order to identify the prevalence of a problem or to answer a specific question.

Studies timeline

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TABLE 4 CPSP studies timeline (by end date)
Studies	Start date	End date	Total confirmed cases to December 31, 2003
Group B strep	January 1996	December 1996	178
Neural tube defects	January 1997	December 1998	107
Creutzfeldt-Jakob disease	January 1997	June 1999	1
Hemorrhagic disease of the newborn	January 1997	December 2000	6
Subacute sclerosing panencephalitis	January 1997	December 2000	3
Cerebral edema in diabetic ketoacidosis	July 1999	June 2001	23
Progressive intellectual and neurological deterioration	July 1999	June 2001	59
Anaphylaxis	January 2000	June 2001	732
Hemolytic uremic syndrome	April 2000	March 2002	140
Smith-Lemli-Opitz syndrome	January 2000	December 2002	35
Hepatitis C virus infection	February 2001	January 2003	58
Neonatal liver failure/perinatal hemochromatosis	February 2001	January 2003	10
Necrotizing fasciitis	September 2001	August 2003	37
Neonatal herpes simplex virus infection	October 2000	September 2003	58
Neonatal hyperbilirubinemia - severe	July 2002	June 2004	203
Vitamin D deficiency rickets	July 2002	June 2004	69
CHARGE association/syndrome	September 2001	August 2004	90
Acute flaccid paralysis	January 1996	December 2004	370
Congenital rubella syndrome	January 1996	December 2004	9
Prader-Willi syndrome	January 2003	December 2004	31
Osteogenesis imperfecta	January 2004	December 2004	N/A
Early-onset eating disorders	March 2003	February 2005	63
Lap-belt syndrome	September 2003	August 2005	3
Adverse drug reactions - serious and life-threatening	January 2004	December 2005	N/A
Severe combined immunodeficiency	April 2004	March 2006	N/A
Acquired demyelinating syndromes of the central nervous system	April 2004	March 2007	N/A
Acute rheumatic fever	April 2004	March 2007	N/A

Program Evaluation

Report from the Chair of the Expert Advisory Group

Preamble

The CPSP evaluation process began early in 2003 with the creation of an Expert Advisory Group (EAG). Individual members were selected based on their experience and expertise in the fields of public health, paediatrics, epidemiology, surveillance and administration. The CPSP Evaluation Working Group held a preparatory meeting in May with the chair and circulated extensive background materials to all EAG members prior to a face-to-face meeting in September, followed by in-camera deliberations. The chair of the EAG presented the following final report to the CPSP Steering Committee in November 2003.

Members of the Expert Advisory Group

Dr. Robert McMurtry (Chair), Former Dean of Medicine, The University of Western Ontario; Former Assistant Deputy Minister of Health

Dr. Margaret Berry, Neonatologist, The Montreal Children's Hospital

Dr. Jeffrey Davis, Chief Medical Officer, Wisconsin Division of Public Health

Dr. Philippe Duclos, Project Leader, Immunization Safety, World Health Organization

Dr. Monika Naus, Epidemiologist, BC Centre for Disease Control; Chair, National Advisory Committee on Immunization

Overall comments

The EAG was unanimous in their opinion that the CPSP represents excellent value for money. The achievement in this respect was seen as excellent and unsurpassed by any comparable program known to the EAG. The CPSP was seen as representing an important collaborative tool for surveillance, research and policy development. In this role, it was perceived as unique in Canada. In other words, it provides an important activity that would disappear in its absence, unless a much larger investment is made to replace it.

The core activity of surveillance of low-frequency, high-impact conditions affecting children has created a network that reaches into all parts of Canada. This not only generates crucial information of these conditions ("they are on target"), but it has also established a mechanism to provide important public health information quickly and inexpensively on a national basis. Examples include the work on hemorrhagic disease of the newborn, confirming the Canadian recommendation of vitamin K as the gold standard for prevention, and on baby walker injuries, confirming the need for a commercial product safety ban on these devices.

The EAG was impressed by the survey of clinicians (paediatricians) that affirmed a change in practice pattern by some, and a high degree of recognition by all. The publications generated by the program also received accolades. The CPSP is encouraged to increase its reach to include nurse practitioners and northern communities and territories.

Finally, the EAG underlined the importance of providing more evidence of impact on public health policy and clinical practice. Annual evaluation of the effectiveness of the Steering Committee was also recommended.

Program objectives

The CPSP has done well in regards to its current objectives. It has initiated programs of national scientific significance and developed an effective surveillance system to monitor the health of Canadian children in relationship to low-frequency, high-impact conditions. Nonetheless, there may be an advantage to rewording the program objectives to reflect emerging priorities and new realities (e.g., changes in federal leadership, positive changes in federal/provincial/territorial relations).

Some specific wording for the program objectives was suggested as follows:

• to identify important disease conditions for surveillance to support paediatricians and public health officials in their role of contributing to the health and well-being of Canadian children;
  
• to ensure a strong infrastructure and maintain and improve a national and collaborative population-based surveillance system to monitor health in Canadian children;
  
• to facilitate research into low-frequency, high-impact childhood disorders for the advancement of knowledge, the enhancement of understanding and the improvement of treatment, prevention and health-care planning.
  

The EAG commended the CPSP on performing its core function so well and emphasized that important additional roles, such as responding to public health emergencies and international collaboration, may require additional resources.

Evaluation objectives

The evaluation process was seen as exemplary, and the EAG was impressed with the surveys of the four stakeholder groups and the CDC (Centers for Disease Control and Prevention) framework. The provided integrated background material was well

done and contained both quantitative and qualitative information of value. The logic frameworks provided an interesting context. However, the program goals were not seen as serving CPSP well and could be deleted without ill consequence.

The case in support of the excellent value for money represented by the CPSP might be strengthened, especially in view of the new federal fiscal reality that will likely be similar to the Program Review of 1994-95. The EAG is convinced that the case can be made and, furthermore, an effort to duplicate the essential work of the program by another means would be considerably more expensive.

Strategic issues and conclusion

The events of 2003 have been characterized by large-scale change and high impacts. All provinces east of Alberta held elections this year with new governments being elected in Ontario, Quebec, and Newfoundland and Labrador. Most observers feel that together with the change in federal leadership, a more collaborative approach at federal/provincial/territorial forums can be anticipated. In addition, a significantly negative economic impact was felt from SARS and the case of one animal with BSE (bovine spongiform encephalopathy). Both were low-frequency, high-impact events and, accordingly, both of these latter developments underscore the importance of public health and the crucial importance of surveillance.

In the reviewers' opinion, the asset that the CPSP represents is relevant to these realities. It is a national program and an important mechanism for surveillance of human health as observed in the health and well-being of one of the most vulnerable populations in Canada, our children.

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