title: Patient-reported outcome measures and risk factors in a quality registry: a basis for more patient-centered diabetes care in Sweden.
abstract: 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.
authors.affiliation: Health Economics Unit, Department of Clinical Sciences in Malmö, Lund University, SE-223 81 Lund, Sweden. Sixten.Borg@med.lu.se.
authors.forename: Sixten
authors.initials: S
authors.lastname: Borg
authors.affiliation: The National Diabetes Register, SE-413 45 Gothenburg, Sweden. bo.palaszewski@vgregion.se.
authors.forename: Bo
authors.initials: B
authors.lastname: Palaszewski
authors.affiliation: Health Economics Unit, Department of Clinical Sciences in Malmö, Lund University, SE-223 81 Lund, Sweden. Ulf.Gerdtham@nek.lu.se.
authors.forename: Ulf-G
authors.initials: UG
authors.lastname: Gerdtham
authors.affiliation: Ivey Business School, Western University, 1255 Western Road, London ON N6G ON1, Canada. fodegaard@ivey.uwo.ca.
authors.forename: Odegaard
authors.initials: O
authors.lastname: Fredrik
authors.affiliation: Health Economics Unit, Department of Clinical Sciences in Malmö, Lund University, SE-223 81 Lund, Sweden. Ulf.Gerdtham@nek.lu.se.
authors.forename: Pontus
authors.initials: P
authors.lastname: Roos
authors.affiliation: The National Diabetes Register, SE-413 45 Gothenburg, Sweden. soffia.gudbjornsdottir@medic.gu.se.
authors.forename: Soffia
authors.initials: S
authors.lastname: Gudbjörnsdottir
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003625:Data Collection; D003920:Diabetes Mellitus / Q000453:epidemiology* / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D018802:Patient-Centered Care; D011787:Quality of Health Care; D012042:Registries; D012307:Risk Factors; D011795:Surveys and Questionnaires; D013548:Sweden / Q000453:epidemiology; D016896:Treatment Outcome; D055815:Young Adult