External review and validation of the Swedish national inpatient register

Jonas F Ludvigsson, Eva Andersson, Anders Ekbom, Maria Feychting, Jeong-Lim Kim, Christina Reuterwall, Mona Heurgren, Petra Otterblad Olausson, Jonas F Ludvigsson, Eva Andersson, Anders Ekbom, Maria Feychting, Jeong-Lim Kim, Christina Reuterwall, Mona Heurgren, Petra Otterblad Olausson

Abstract

Background: The Swedish National Inpatient Register (IPR), also called the Hospital Discharge Register, is a principal source of data for numerous research projects. The IPR is part of the National Patient Register. The Swedish IPR was launched in 1964 (psychiatric diagnoses from 1973) but complete coverage did not begin until 1987. Currently, more than 99% of all somatic (including surgery) and psychiatric hospital discharges are registered in the IPR. A previous validation of the IPR by the National Board of Health and Welfare showed that 85-95% of all diagnoses in the IPR are valid. The current paper describes the history, structure, coverage and quality of the Swedish IPR.

Methods and results: In January 2010, we searched the medical databases, Medline and HighWire, using the search algorithm "validat* (inpatient or hospital discharge) Sweden". We also contacted 218 members of the Swedish Society of Epidemiology and an additional 201 medical researchers to identify papers that had validated the IPR. In total, 132 papers were reviewed. The positive predictive value (PPV) was found to differ between diagnoses in the IPR, but is generally 85-95%.

Conclusions: In conclusion, the validity of the Swedish IPR is high for many but not all diagnoses. The long follow-up makes the register particularly suitable for large-scale population-based research, but for certain research areas the use of other health registers, such as the Swedish Cancer Register, may be more suitable.

Figures

Figure 1
Figure 1
Timeline of the Swedish Inpatient Register. Years inside the arrow indicate the first year when an ICD classification was in use. ICD-10 was introduced in 1997, with the exception of the county of Skåne where ICD-9 was still in use throughout 1997. The one-year delay in introducing ICD-10 in Skåne has some implications when identifying patients with a certain disease/disorder in this county because about 8-9% of the Swedish population live in Skåne.
Figure 2
Figure 2
Somatic care: coverage of the Swedish population. Red = Proportion of the Swedish population living in counties that had started to report somatic hospital discharges to the Swedish Inpatient Register. Blue = Proportion of the Swedish population living in counties where all somatic hospital discharges were reported to the Swedish Inpatient Register (1964: 6%; 1972: 36%; 1982: 71%; 1984: 86%). In 1976, for the first time more than 50% of the Swedish population were covered. Complete coverage (100%) was attained in 1987. County population data obtained from the government agency Statistics Sweden (Appendix).
Figure 3
Figure 3
Psychiatric care: coverage of the Swedish population. Blue = Proportion of the Swedish population living in counties where all psychiatric hospital discharges were reported to the Swedish Inpatient Register (1973: 86%; 1985: 94%; 1986: 98%). All counties in Sweden started to record psychiatric care in 1973. (Actually, psychiatric diagnoses were recorded before 1973 but then removed until 1973 - see text). County population data obtained from the government agency Statistics Sweden (Appendix).
Figure 4
Figure 4
Number of hospital discharges from 1964-2007[2]. Surgery = General surgery.
Figure 5
Figure 5
A sample of variables from the Swedish Inpatient Register (as seen with the statistics programme SPSS). Each hospital discharge is listed on a row. This means that an individual may occupy several rows in the IPR (first, second, third hospital discharge, etc.). The variable lpnr (or lopnr) is constructed when the dataset is delivered to the researcher, and serves as unique serial number. In the original IPR dataset, each discharge is linked to a unique Personal Identity Number (PIN)[3]. Please note that the order of the variables above may differ from that in the original IPR dataset.
Figure 6
Figure 6
Percentage of hospital discharges for injury and poisoning with reported external cause[2] .
Figure 7
Figure 7
Collection of validation studies. In both the PubMed and HighWire Press search, we used the following search algorithm to identify relevant papers: validat* (inpatient or hospital discharge) Sweden. Databases were searched from the start of the databases until January 2010. *In the HighWire Press literature search, JFL manually screened all titles, authors, keywords and, when available, abstracts for the 840 hits. If a validation of the inpatient register could not be ruled out, the corresponding author was contacted. A number of publications could then be excluded; 14 "new papers" remained that had not previously been identified.

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