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Patient-Reported Outcome Measures and Risk Factors in a Quality Registry: A Basis for More Patient-Centered Diabetes Care in Sweden

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Author

Summary, in English

Diabetes is one of the chronic diseases that constitute the greatest disease burden in the world. The Swedish National Diabetes Register is an essential part of the diabetes care system. Currently it mainly records clinical outcomes, but here we describe how it has started to collect patient-reported outcome measures, complementing the standard registry data on clinical outcomes as a basis for evaluating diabetes care. Our aims were to develop a questionnaire to measure patient abilities and judgments of their experience of diabetes care, to describe a Swedish diabetes patient sample in terms of their abilities, judgments, and risk factors, and to characterize groups of patients with a need for improvement. Patient abilities and judgments were estimated using item response theory. Analyzing them together with standard risk factors for diabetes comorbidities showed that the different types of data describe different aspects of a patient’s situation. These aspects occasionally overlap, but not in any particularly useful way. They both provide important information to decision makers, and neither is necessarily more relevant than the other. Both should therefore be considered, to achieve a more complete evaluation of diabetes care and to promote person-centered care.

Publishing year

2014

Language

English

Pages

12223-12246

Publication/Series

International Journal of Environmental Research and Public Health

Volume

11

Issue

12

Document type

Journal article

Publisher

MDPI AG

Topic

  • Environmental Health and Occupational Health

Keywords

  • patient-reported outcome measures/PROM
  • item response theory/IRT
  • risk factors
  • registry data
  • diabetes
  • patient-centered diabetes care
  • evaluation

Status

Published

Project

  • Diabetes: Individual perspectives on outcomes, evaluation and improvement.

Research group

  • Health Economics

ISBN/ISSN/Other

  • ISSN: 1660-4601