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Open AccessArticle

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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Health Economics Unit, Department of Clinical Sciences in Malmö, Lund University, SE-223 81 Lund, Sweden
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The Swedish Institute for Health Economics (IHE), Box 2127, SE-220 02 Lund, Sweden
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The National Diabetes Register, SE-413 45 Gothenburg, Sweden
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Centre of Registers in Region Vastra Gotaland, SE-413 45 Gothenburg, Sweden
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Department of Economics, School of Economics and Management, Box 7082, SE-220 07 Lund, Sweden
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Ivey Business School, Western University, 1255 Western Road, London ON N6G ON1, Canada
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Department of Medicine, Sahlgrenska University Hospital, University of Gothenburg, SE-413 45 Gothenburg, Sweden
*
Author to whom correspondence should be addressed.
Deceased and Previously at Institute of Applied Economics, Malmo, Sweden
Int. J. Environ. Res. Public Health 2014, 11(12), 12223-12246; https://doi.org/10.3390/ijerph111212223
Received: 13 August 2014 / Revised: 23 October 2014 / Accepted: 12 November 2014 / Published: 26 November 2014
(This article belongs to the Section Health Economics)
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. View Full-Text
Keywords: patient-reported outcome measures/PROM; item response theory/IRT; risk factors; registry data; diabetes; patient-centered diabetes care; evaluation patient-reported outcome measures/PROM; item response theory/IRT; risk factors; registry data; diabetes; patient-centered diabetes care; evaluation
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Borg, S.; Palaszewski, B.; Gerdtham, U.-G.; Fredrik, Ö.; Roos, P.; Gudbjörnsdottir, S. Patient-Reported Outcome Measures and Risk Factors in a Quality Registry: A Basis for More Patient-Centered Diabetes Care in Sweden. Int. J. Environ. Res. Public Health 2014, 11, 12223-12246.

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