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Reporting of malformations in routine health registers
E Hemminki1, J Meriläinen, J Teperi
1Department of Public Health, University of Helsinki, Finland.
Insights
Routinely collected diagnoses in national birth registers are more effective for tracking malformations than specialized malformation registers. Changes in data collection methods significantly impacted reporting accuracy.
Area of Science:
- Public Health
- Epidemiology
- Medical Informatics
Background:
- Accurate identification of congenital malformations is crucial for public health surveillance.
- National health registers are vital tools for monitoring birth defects.
- The effectiveness of different register types for malformation surveillance requires evaluation.
Purpose of the Study:
- To compare the utility of three Finnish national registers in identifying congenital malformations.
- To assess the impact of changes in data collection methods on malformation reporting.
Main Methods:
- Comparative analysis of data from the malformation register, birth register, and hospital in-patient discharge register.
- Inclusion of 60,255 children born in 1987.
- Analysis of data from 1987-1990, including ICD-9 codes and a shift to a yes-no format in the birth register.
Main Results:
- The malformation register showed underrepresentation of diagnoses compared to birth and in-patient registers.
- The malformation register identified few cases not present in the other two registers.
- A 75% decline in malformation reports followed the adoption of a simplified recording method in the birth register.
Conclusions:
- Routinely collected diagnostic data, without requiring explicit malformation judgment, is more effective for surveillance.
- National birth registers utilizing routine diagnostic codes are superior for monitoring malformation occurrence.
- Changes in data recording protocols significantly influence surveillance data quality.
Abstract:
The utility of three national registers--the malformation, birth, and hospital in-patient discharge registers--in identification of malformations among 60,255 children born in 1987 in Finland was compared. Information in the malformation register is collected by specific reporting of physicians; information on the malformed children in the other two registers in 1987 through 1990 was routinely collected and identified by ICD 9-codes (740-759, 7886A). From October 1990 on, the ICD-9 codes were omitted from the birth register and malformation data were asked only in a yes-no question. In 1987, the malformation register included 1,032, the birth register 3,084 and the in-patient register 2,003 malformed infants identified up to the age of 1 year. There was underrepresentation of almost all malformation diagnoses in the malformation register. Individual linkage of the three registers showed that the malformation register revealed very few cases not recorded in the birth and the in-patient registers. With the adoption of the new recording method in the birth register beginning in October 1990, reports of malformation declined by 75%. Our analyses showed that data sources based on diagnoses collected routinely and not requiring an explicit decision on whether or not a problem is a malformation, can be more useful for routine surveillance of occurrence of malformations.