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

International Journal of Environmental Research and Public Health

Sixten Borg⁴  Bo Palaszewski³  Ulf-G Gerdtham⁴  Fredrik 훞gaard²  Pontus Roos¹  Soffia Gudbjörnsdottir³ 

[1] Ivey Business School, Western University, 1255 Western Road, London ON N6G ON1, Canada; E-Mail:;The National Diabetes Register, SE-413 45 Gothenburg, Sweden; E-Mails:;Health Economics Unit, Department of Clinical Sciences in Malmö, Lund University, SE-223 81 Lund, Sweden; E-Mail:

关键词: patient-reported outcome measures/PROM;    item response theory/IRT;    risk factors;    registry data;    diabetes;    patient-centered diabetes care;    evaluation;   

DOI  :  10.3390/ijerph111212223

来源: mdpi

【 摘 要 】

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.

【 授权许可】

CC BY   
© 2014 by the authors; licensee MDPI, Basel, Switzerland.