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Administrative health databases for addressing emerging issues in adults with CHD: a systematic review

Published online by Cambridge University Press:  29 April 2018

Sarah Cohen ,
Harel Gilutz ,
Ariane J. Marelli ,
Laurence Iserin ,
Arriel Benis ,
Damien Bonnet  and
Anita Burgun
Sarah Cohen*
Affiliation:
INSERM-UMRS 1138 Team 22, Cordeliers Research Center, Paris Descartes University, Paris, France McGill Adult Unit for Congenital Heart Disease Excellence, Montreal, Quebec, Canada Adult Congenital Heart Disease Unit, Cardiology Department, Reference Center for Complex Congenital Heart Diseases (M3C), European Georges Pompidou Hospital, Assistance Publique des Hôpitaux de Paris (AP-HP), Paris, France
Harel Gilutz
Affiliation:
School of Medicine, Faculty of Health Sciences, Ben-Gurion University of the Negev, Beer-Sheva, Israel
Ariane J. Marelli
Affiliation:
McGill Adult Unit for Congenital Heart Disease Excellence, Montreal, Quebec, Canada
Laurence Iserin
Affiliation:
Adult Congenital Heart Disease Unit, Cardiology Department, Reference Center for Complex Congenital Heart Diseases (M3C), European Georges Pompidou Hospital, Assistance Publique des Hôpitaux de Paris (AP-HP), Paris, France
Arriel Benis
Affiliation:
Faculty of Technology Management, Holon Institute of Technology (HIT), Holon, Israel
Damien Bonnet
Affiliation:
Department of Paediatric Cardiology, Centre de référence des Malformations Cardiaques Congénitales Complexes (M3C), Hôpital Necker-Enfants Malades, AP-HP, Paris, France Paris Descartes University Sorbonne Paris Cité, Paris, France
Anita Burgun
Affiliation:
INSERM-UMRS 1138 Team 22, Cordeliers Research Center, Paris Descartes University, Paris, France Department of Medical Informatics and Public Health, European Georges Pompidou Hospital, AP-HP, Paris, France
*
Author for correspondence: S. Cohen, INSERM, U1138, Centre de Recherche des Cordeliers, Equipe 22, 15 rue de l’Ecole de Médecine, Paris 75006, France. Tel: +33 1 44 27 63 93; Fax: +33 1 44 27 64 21 E-mail: [email protected]
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Abstract

The need for population-based studies of adults with CHD has motivated the growing use of secondary analyses of administrative health data in a variety of jurisdictions worldwide. We aimed at systematically reviewing all studies using administrative health data sources for adult CHD research from 2006 to 2016. Using PubMed and Embase (1 January, 2006 to 1 January, 2016), we identified 2217 abstracts, from which 59 studies were included in this review. These comprised 12 different data sources from six countries. Of these, 55% originated in the United States of America, 28% in Canada, and 17% in Europe and Asia. No study was published before 2007, after which the number of publications grew exponentially. In all, 41% of the studies were cross-sectional and 25% were retrospective cohort studies with a wide variation in the availability of patient-level compared with hospitalisation-level episodes of care; 58% of studies from eight different data sources linked administrative data at a patient level; and 37% of studies reported validation procedures. Assessing resource utilisation and temporal trends of relevant epidemiological and outcome end points were the most reported objectives. The median impact factor of publication journals was 4.04, with an interquartile range of 3.15, 7.44. Although not designed for research purposes, administrative health databases have become powerful data sources for studying adult CHD populations because of their large sample sizes, comprehensive records, and long observation periods, providing a useful tool to further develop quality of care improvement programmes. Data linkage with electronic records will become important in obtaining more granular life-long adult CHD data. The health services nature of the data optimises the impact on policy and public health.

Keywords

Adult with CHDadministrative health databaseepidemiologyoutcomes
Type
Original Articles
Information
Cardiology in the Young , Volume 28 , Issue 6 , June 2018 , pp. 844 - 853
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Copyright
© Cambridge University Press 2018 

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