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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, Sixten LU ; Palaszewski, Bo ; Gerdtham, Ulf LU orcid ; Ödegaard, Fredrik LU ; Roos, Pontus and Gudbjörnsdottir, Soffia (2014) In International Journal of Environmental Research and Public Health 11(12). p.12223-12246
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... (More)
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. (Less)
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author
; ; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
patient-reported outcome measures/PROM, item response theory/IRT, risk factors, registry data, diabetes, patient-centered diabetes care, evaluation
in
International Journal of Environmental Research and Public Health
volume
11
issue
12
pages
12223 - 12246
publisher
MDPI AG
external identifiers
  • pmid:25431875
  • wos:000346797100010
  • scopus:84912570623
ISSN
1660-4601
DOI
10.3390/ijerph111212223
project
Diabetes: Individual perspectives on outcomes, evaluation and improvement.
language
English
LU publication?
yes
id
a5a9cac2-afef-46c0-afef-2075717cc908 (old id 4814412)
date added to LUP
2016-04-01 10:27:48
date last changed
2023-01-17 20:06:58
@article{a5a9cac2-afef-46c0-afef-2075717cc908,
  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.}},
  author       = {{Borg, Sixten and Palaszewski, Bo and Gerdtham, Ulf and Ödegaard, Fredrik and Roos, Pontus and Gudbjörnsdottir, Soffia}},
  issn         = {{1660-4601}},
  keywords     = {{patient-reported outcome measures/PROM; item response theory/IRT; risk factors; registry data; diabetes; patient-centered diabetes care; evaluation}},
  language     = {{eng}},
  number       = {{12}},
  pages        = {{12223--12246}},
  publisher    = {{MDPI AG}},
  series       = {{International Journal of Environmental Research and Public Health}},
  title        = {{Patient-Reported Outcome Measures and Risk Factors in a Quality Registry: A Basis for More Patient-Centered Diabetes Care in Sweden}},
  url          = {{https://lup.lub.lu.se/search/files/1867088/4814413.pdf}},
  doi          = {{10.3390/ijerph111212223}},
  volume       = {{11}},
  year         = {{2014}},
}