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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

Borg S, Palaszewski B, Gerdtham UG, Ödegaard F, Roos P and Gudbjörnsdottir S

Diabetes is one of the chronic diseases that constitute the greatest disease burden in the world. The Swedish National Diabetes Register (NDR) is an essential part of the diabetes care system in Sweden. The registry mainly records clinical outcomes, but has recently started to collect patient-reported outcome measures, complementing the standard registry data on clinical outcomes as a basis for evaluating diabetes care. The authors develop a questionnaire to measure patient abilities and judgments of their experience of diabetes care to further expand patient reported outcomes in the NDR.

Patient abilities and judgments were then 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. They both provide important information to decision makers, and neither is necessarily more relevant than the other. Both types of outcome measures should therefore be considered, to achieve a more complete evaluation of diabetes care and to promote person-centered care.

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International Journal of Environmental Research and Public Health 2014; 11(12): 12223 - 12246
DOI: 10.3390/ijerph111212223