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      External review and validation of the Swedish national inpatient register

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          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.

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          Most cited references 57

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          The American Rheumatism Association 1987 revised criteria for the classification of rheumatoid arthritis.

           D McShane,  D. Bloch,  Emma Healey … (1988)
          The revised criteria for the classification of rheumatoid arthritis (RA) were formulated from a computerized analysis of 262 contemporary, consecutively studied patients with RA and 262 control subjects with rheumatic diseases other than RA (non-RA). The new criteria are as follows: 1) morning stiffness in and around joints lasting at least 1 hour before maximal improvement; 2) soft tissue swelling (arthritis) of 3 or more joint areas observed by a physician; 3) swelling (arthritis) of the proximal interphalangeal, metacarpophalangeal, or wrist joints; 4) symmetric swelling (arthritis); 5) rheumatoid nodules; 6) the presence of rheumatoid factor; and 7) radiographic erosions and/or periarticular osteopenia in hand and/or wrist joints. Criteria 1 through 4 must have been present for at least 6 weeks. Rheumatoid arthritis is defined by the presence of 4 or more criteria, and no further qualifications (classic, definite, or probable) or list of exclusions are required. In addition, a "classification tree" schema is presented which performs equally as well as the traditional (4 of 7) format. The new criteria demonstrated 91-94% sensitivity and 89% specificity for RA when compared with non-RA rheumatic disease control subjects.
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            The Swedish personal identity number: possibilities and pitfalls in healthcare and medical research

             Jonas F. Ludvigsson,  Petra Otterblad Olausson,  Birgitta Pettersson … (2009)
            Swedish health care and national health registers are dependent on the presence of a unique identifier. This paper describes the Swedish personal identity number (PIN) and explores ethical issues of its use in medical research. A ten-digit-PIN is maintained by the National Tax Board for all individuals that have resided in Sweden since 1947. Until January 2008, an estimated 75,638 individuals have changed PIN. The most common reasons for change of PIN are incorrect recording of date of birth or sex among immigrants or newborns. Although uncommon, change of sex always leads to change of PIN since the PIN is sex-specific. The most common reasons for re-use of PIN (n = 15,887), is when immigrants are assigned a PIN that has previously been assigned to someone else. This is sometimes necessary since there is a shortage of certain PIN combinations referring to dates of birth in the 1950s and 1960s. Several ethical issues can be raised pro and con the use of PIN in medical research. The Swedish PIN is a useful tool for linkages between medical registers and allows for virtually 100% coverage of the Swedish health care system. We suggest that matching of registers through PIN and matching of national health registers without the explicit approval of the individual patient is to the benefit for both the individual patient and for society.
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              Association of chronic inflammation, not its treatment, with increased lymphoma risk in rheumatoid arthritis.

               Johan Askling,  Anca I. Catrina,  Anastasia Iliadou … (2006)
              Chronic inflammatory conditions such as rheumatoid arthritis (RA) have been associated with malignant lymphomas. This study was undertaken to investigate which patients are at highest risk, and whether antirheumatic treatment is hazardous or protective. We performed a matched case-control study of 378 consecutive Swedish RA patients in whom malignant lymphoma occurred between 1964 and 1995 (from a population-based RA cohort of 74,651 RA patients), and 378 controls. Information on disease characteristics and treatment from onset of RA until lymphoma diagnosis was abstracted from medical records. Lymphoma specimens were reclassified and tested for Epstein-Barr virus (EBV). Relative risks (odds ratios [ORs]) for lymphomas (by subtype) associated with deciles of cumulative disease activity were assessed, as were ORs associated with drug treatments. The relative risks of lymphoma were only modestly elevated up to the seventh decile of cumulative disease activity. Thereafter, the relative risk increased dramatically (OR ninth decile 9.4 [95% confidence interval 3.1-28.0], OR tenth decile 61.6 [95% confidence interval 21.0-181.0]). Most lymphomas (48%) were of the diffuse large B cell type, but other lymphoma subtypes also displayed an association with cumulative disease activity. Standard nonbiologic treatments did not increase lymphoma risk. EBV was present in 12% of lymphomas. Risk of lymphoma is substantially increased in a subset of patients with RA, those with very severe disease. High inflammatory activity, rather than its treatment, is a major risk determinant.
              Article 0 comments Cited 121 times – based on 0 reviews     Review now
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                Author and article information

                Affiliations
                [1 ]Department of Paediatrics, Örebro University Hospital, Sweden
                [2 ]Clinical Epidemiology Unit, Department of Medicine, Karolinska University Hospital, Karolinska Institutet, Sweden
                [3 ]Section of Occupational and Environmental Medicine, University of Gothenburg, Sweden
                [4 ]Institute of Environmental Medicine, Karolinska Institutet, Sweden
                [5 ]Research Unit, Jämtland County, Sweden
                [6 ]Department of Public Health and Clinical Medicine, Umeå University, Sweden
                [7 ]Department of Statistics and Analyses, National Board of Health and Welfare, Stockholm, Sweden
                Contributors
                Jonas F Ludvigsson
                Eva Andersson
                Anders Ekbom
                Maria Feychting
                Jeong-Lim Kim
                Christina Reuterwall
                Mona Heurgren
                Petra Otterblad Olausson
                Journal
                Journal ID (nlm-ta): BMC Public Health
                Title: BMC Public Health
                Publisher: BioMed Central
                ISSN (Electronic): 1471-2458
                Publication date Collection 2011
                Publication date (Electronic): 9 June 2011
                Volume: 11
                Page: 450
                PMC ID: 3142234
                Publisher ID: 1471-2458-11-450
                PubMed ID: 21658213
                DOI: 10.1186/1471-2458-11-450
                Copyright statement: Copyright ©2011 Ludvigsson et al; licensee BioMed Central Ltd.

                License:

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                Product
                Categories
                Subject: Correspondence

                Link to data:

                ScienceOpen disciplines: Public health

                Keywords: disease, register, epidemiology, classification of diseases, morbidity

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