OBJECTIVES: To document the methodology and activities of existing national paediatric surveillance units; the formation of INoPSU; the diseases studied by INoPSU members; and the impact of such studies on education, public health and paediatric practice.
METHODS: Directors of paediatric surveillance units in Australia, Britain, Canada, Germany, the Netherlands, Latvia, Malaysia, Papua New Guinea, New Zealand and Switzerland were asked to provide information on each unit's affiliations, funding and staffing; the method of case ascertainment, the mailing list and response rates; and diseases studied. Original articles that reported data derived from units were identified by a search of an electronic database (MEDLINE), and additional information was obtained from units' annual reports.
RESULTS: Worldwide, 10 units (established from 1986 to 1997), use active national surveillance of more than 8500 clinicians each month to identify cases of rare or uncommon diseases in a childhood population (younger than 15 years of age) of over 47 million (monthly response rate 73% to 98%). By January 1999, units had initiated 147 studies on 103 different conditions, and 63 studies were completed.
CONCLUSION: INoPSU enhances collaboration among units from four continents, providing a unique opportunity for simultaneous cross-sectional studies of rare diseases in populations with diverse geographical and ethnic characteristics. It facilitates the sharing of ideas regarding current methodology, ethics, the most appropriate means of evaluating units and their potential application.
METHODOLOGY: A prospective observational study carried out over a 2-year period between 2 September 1996 to 2 September 1998. For every training course conducted, the instructors completed a NRP course report form (Form A) that documented the instructors involved in the course. For every participant who attended the course and successfully completed it, the instructors submitted a record form (Form B) that contained the name, hospital address, department, profession, place of work, language used for training and the marks obtained by the individual participant. After each course, completed forms A and B were returned to the NRP secretariat for compilation.
RESULTS: Of the 37 core instructors, 35 (94.6%) carried out training courses in their respective home states. A further 513 new instructors and 2256 providers were trained subsequently. A total of 2806 health personnel from all 13 states of Malaysia were NRP-certified during the first 2 years. However, 61.2% (n = 335) of the 550 instructors were inactive trainers, having trained less than four personnel per instructor a year. Most of the NRP-certified personnel were either doctors (32.0%) or nursing staff (64.4%). More than 60% of these worked either in the labour rooms, neonatal intensive care units or special care nurseries. At least one person from all three university hospitals and all general hospitals, 89.3% (92/103) of the district hospitals, 3.5% (73/2090) of the maternal and child health services, and 21% (46/219) of the private hospitals and maternity homes, were trained in the NRP.
CONCLUSION: Dissemination of the NRP in Malaysia during the first 2 years was very encouraging. Further efforts should be made to spread the program to private hospitals and the maternal and child health services. In view of the large number of inactive instructors, the criteria for future selection of instructors should be more stringent.
METHODOLOGY: Twenty-four children referred consecutively to the University of Malaya Medical Centre who fulfilled Apley's criteria (at least three episodes of abdominal pain severe enough to affect normal activity over a period longer than 3 months) were tested for lactase deficiency using a pocket breath test analyser (BreatH2 meter; Europa Scientific, Cheshire, England). Lactulose was used to check for hydrogen-producing capacity.
RESULTS: There were 14 males and 10 females in the study, consisting of five Malays, 14 Chinese and five Indians. Mean age was 9.9 years. Seventeen of the 24 children (70.8%) with recurrent abdominal pain who underwent the breath hydrogen test had a positive result. In those with a negative result, subsequent lactulose administration resulted in a positive rise in breath hydrogen. None of the 24 children developed abdominal pain during the test. All the Indian subjects, 71.4% of the Chinese subjects and 40% of the Malay subjects with recurrent abdominal pain had lactase deficiency. The proportion of boys and girls with lactase deficiency was similar (71.4 vs 70.0%, respectively). There was no significant difference between lactase sufficient and deficient children with recurrent abdominal pain with regard to sex, age, ethnic group and clinical features. Following a lactose-free diet, none of the children in the breath hydrogen positive and negative groups reported any appreciable difference in pain symptoms.
CONCLUSIONS: The prevalence of lactase deficiency among this group of Malaysian children with recurrent abdominal pain was high, but lactase deficiency did not appear to play an important role in causing the symptoms.