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      Refinement of Swedish Administrative Registers to Monitor Stroke Events on the National Level

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          Abstract

          Background: Routinely collected databases are kept for administrative purposes. We have refined the analyses of the Swedish National Patient Register and the Cause of Death Register and explored their validity to monitor stroke at the population level. Methods: First-ever strokes (incident cases) and all stroke events were measured by combining the two administrative registers and adding refinements. The administrative registers were validated against the Northern Sweden MONICA, a well-validated population-based epidemiological stroke register. Positive predictive values (PPVs) and sensitivity were calculated. Results: After refinements (restriction to first-ever strokes and additional minor delineations), the PPV of the two administrative registers combined was 94% and sensitivity 92% when compared with all MONICA stroke categories together. For stroke attacks (first and recurrent events together), the PPV in the administrative registers was 85% and sensitivity 91%. The PPV was higher in women than in men, whereas the sensitivity was similar. The PPV was lower but sensitivity higher in people below compared with those above 75 years of age. Both PPV and sensitivity were lower among fatal cases than among cases that survived 28 days. Conclusions: After refinement, Swedish national administrative registers may, with some caveats, be used as a low-resource-consuming alternative to crudely monitor stroke incidence rates at the national level. If further accuracy is strived for, high-quality conventional epidemiological registers are required.

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          Most cited references16

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          Validity of Stroke Diagnoses in a National Register of Patients

          Background: Many registers containing routine medical information have been developed for research and surveillance purposes. In epidemiological research assessment of endpoints is often conducted via registers. In the present study we validated stroke and transient ischemic attack (TIA) diagnoses in the Danish National Register of Patients (DNRP). Methods: Subjects from a Danish cohort study, the Copenhagen City Heart Study (n = 19,698), were crosslinked with the DNRP. The following International Classification of Disease 10th revision codes were used to identify possible strokes and TIAs: I60–I69 and G45. Two independent raters reviewed all cases. Positive predictive values of stroke, TIA and stroke subtypes were estimated by dividing the confirmed cases by the total number of cases located in the DNRP. Interrater reliability was tested using ĸ statistics. Results: Of 236 possible cerebrovascular events, 1 in 6 stroke diagnoses did not meet study criteria. The majority of events in the DNRP were registered as unspecified stroke (I64), n = 105 (44%), of which two thirds were diagnosed as ischemic stroke events by the raters. Intracerebral hemorrhage and ischemic stroke had a positive predictive value from 74 to 97%, respectively. Conclusion: Our results show that the DNRP tends to overestimate the number of cerebrovascular events, while ischemic stroke is underestimated.
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            The validity of the Finnish Hospital Discharge Register and Causes of Death Register data on coronary heart disease.

            The recent introduction of sensitive markers of myocardial injury is likely to affect the epidemiology of coronary heart disease (CHD). The American Heart Association together with other societies and research agencies have recently published a new definition on acute CHD to improve consistency in epidemiological and clinical studies (referred here as the '2003 definition'). In this study we compare the data on CHD events in the Finnish National Hospital Discharge Register (HDR) and the Causes of Death Register (CDR) with the population-based myocardial infarction (MI) register, FINMONICA/FINAMI. The FINMONICA/FINAMI events were classified according to the 2003 definition. The relevant International Classification of Diseases (ICD) codes from the HDR and CDR were used. Using the 2003 definition as the reference, the overall sensitivity of the ICD codes for MI in the combined HDR and CDR was 83% and the positive predictive value (PPV) was 90%. When the ICD codes for unstable angina were added to the analyses, the sensitivity improved to 85% and the PPV declined to 83%. In the age group 35-74 the sensitivity of the MI codes improved over time, in men from 64% in 1988-1992 to 81% in 1998-2002, and in women from 61 to 78%, respectively. The oldest age group, 75 years or older, had sensitivity and PPV values comparable to those of the younger. Diagnoses of fatal and non-fatal CHD events in the Finnish HDR and Causes of Death register were reasonably valid indicators for hard CHD events when compared with the FINMONICA/FINAMI register data.
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              The Riks-Stroke story: building a sustainable national register for quality assessment of stroke care.

              Riks-Stroke, the Swedish Stroke Register, is the world's longest-running national stroke quality register (established in 1994) and includes all 76 hospitals in Sweden admitting acute stroke patients. The development and maintenance of this sustainable national register is described. Riks-Stroke includes information on the quality of care during the acute phase, rehabilitation and secondary prevention of stroke, as well as data on community support. Riks-Stroke is unique among stroke quality registers in that patients are followed during the first year after stroke. The data collected describe processes, and medical and patient-reported outcome measurements. The register embraces most of the dimensions of health-care quality (evidence-based, safe, provided in time, distributed fairly and patient oriented). Annually, approximately 25,000 patients are included. In 2009, approximately 320,000 patients had been accumulated (mean age 76-years). The register is estimated to cover 82% of all stroke patients treated in Swedish hospitals. Among critical issues when building a national stroke quality register, the delicate balance between simplicity and comprehensiveness is emphasised. Future developments include direct transfer of data from digital medical records to Riks-Stroke and comprehensive strategies to use the information collected to rapidly implement new evidence-based techniques and to eliminate outdated methods in stroke care. It is possible to establish a sustainable quality register for stroke at the national level covering all hospitals admitting acute stroke patients. Riks-Stroke is fulfilling its main goals to support continuous quality improvement of Swedish stroke services and serve as an instrument for following up national stroke guidelines. © 2010 The Authors. International Journal of Stroke © 2010 World Stroke Organization.
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                Author and article information

                Journal
                NED
                Neuroepidemiology
                10.1159/issn.0251-5350
                Neuroepidemiology
                S. Karger AG
                0251-5350
                1423-0208
                2013
                May 2013
                24 January 2013
                : 40
                : 4
                : 240-246
                Affiliations
                aNational Board of Health and Welfare, Stockholm, and bMedicine, Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden
                Author notes
                *Birgitta Stegmayr, Unit of Epidemiology, National Board of Health and Welfare, SE– 106 30 Stockholm (Sweden), E-Mail birgitta.stegmayr@socialstyrelsen.se; or birgitta.stegmayr@medicin.umu.se
                Article
                345953 Neuroepidemiology 2013;40:240–246
                10.1159/000345953
                23364278
                d4f811ed-2dc6-401d-9a00-b40f845c6578
                © 2013 S. Karger AG, Basel

                Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher. Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug. Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.

                History
                : 10 February 2012
                : 09 November 2012
                Page count
                Tables: 5, Pages: 7
                Categories
                Methods in Neuroepidemiology

                Geriatric medicine,Neurology,Cardiovascular Medicine,Neurosciences,Clinical Psychology & Psychiatry,Public health
                Event rate,Incidence,Northern Sweden MONICA study,Validation,Administrative registers,Attack rate,Stroke

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