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Patient-reported outcome and experience measures for diabetes : development of scale models, differences between patient groups and relationships with cardiovascular and diabetes complication risk factors, in a combined registry and survey study in Sweden

Borg, Sixten LU ; Eeg-Olofsson, Katarina; Palaszewski, Bo; Svedbo Engström, Maria; Gerdtham, Ulf-G LU and Gudbjörnsdottir, Soffia (2019) In BMJ Open 9(1).
Abstract

PURPOSE: The Swedish National Diabetes Register (NDR) has developed a diabetes-specific questionnaire to collect information on individuals' management of their diabetes, collaboration with healthcare providers and the disease's impact on daily life. Our main objective was to develop measures of well-being, abilities to manage diabetes and judgements of diabetes care, and to detect and quantify differences using the NDR questionnaire.

DESIGN, SETTING AND PARTICIPANTS: The questionnaire was analysed with using responses from 3689 participants with type 1 and 2 diabetes, randomly sampled from the NDR population, combined with register data on patient characteristics and cardiovascular and diabetes complication risk... (More)

PURPOSE: The Swedish National Diabetes Register (NDR) has developed a diabetes-specific questionnaire to collect information on individuals' management of their diabetes, collaboration with healthcare providers and the disease's impact on daily life. Our main objective was to develop measures of well-being, abilities to manage diabetes and judgements of diabetes care, and to detect and quantify differences using the NDR questionnaire.

DESIGN, SETTING AND PARTICIPANTS: The questionnaire was analysed with using responses from 3689 participants with type 1 and 2 diabetes, randomly sampled from the NDR population, combined with register data on patient characteristics and cardiovascular and diabetes complication risk factors.

METHODS: We used item response theory to develop scales for measuring well-being, abilities to manage diabetes and judgements of diabetes care (scores). Test-retest reliability on the scale level was analysed with intraclass correlation. Associations between scores and risk factor levels were investigated with subgroup analyses and correlations.

RESULTS: We obtained scales with satisfactory measurement properties, covering patient reported outcome measures such as general well-being and being free of worries, and patient reported experience measure, for example, access and continuity in diabetes care. All scales had acceptable test-retest reliability and could detect differences between diabetes types, age, gender and treatment subgroups. In several aspects, for example, freedom of worries, type 1 patients report lower than type 2, and younger patients lower than older. Associations were found between some scores and glycated haemoglobin, but none with systolic blood pressure or low-density lipoprotein cholesterol. Clinicians report positive experience of using scores, visually presented, in the patient dialogue.

CONCLUSIONS: The questionnaire measures and detects differences in patient well-being, abilities and judgements of diabetes care, and identifies areas for improvement. To further improve diabetes care, we conclude that patient-reported measures are important supplements to cardiovascular and diabetes complication risk factors, reflecting patient experiences of living with diabetes and diabetes care.

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Please use this url to cite or link to this publication:
author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
BMJ Open
volume
9
issue
1
pages
11 pages
publisher
British Medical Journal Publishing Group
external identifiers
  • scopus:85059500159
ISSN
2044-6055
DOI
10.1136/bmjopen-2018-025033
language
English
LU publication?
yes
id
825cfdfe-c207-4174-bb36-431e61c9f8fa
date added to LUP
2019-01-09 09:31:55
date last changed
2019-03-08 02:53:36
@article{825cfdfe-c207-4174-bb36-431e61c9f8fa,
  abstract     = {<p>PURPOSE: The Swedish National Diabetes Register (NDR) has developed a diabetes-specific questionnaire to collect information on individuals' management of their diabetes, collaboration with healthcare providers and the disease's impact on daily life. Our main objective was to develop measures of well-being, abilities to manage diabetes and judgements of diabetes care, and to detect and quantify differences using the NDR questionnaire.</p><p>DESIGN, SETTING AND PARTICIPANTS: The questionnaire was analysed with using responses from 3689 participants with type 1 and 2 diabetes, randomly sampled from the NDR population, combined with register data on patient characteristics and cardiovascular and diabetes complication risk factors.</p><p>METHODS: We used item response theory to develop scales for measuring well-being, abilities to manage diabetes and judgements of diabetes care (scores). Test-retest reliability on the scale level was analysed with intraclass correlation. Associations between scores and risk factor levels were investigated with subgroup analyses and correlations.</p><p>RESULTS: We obtained scales with satisfactory measurement properties, covering patient reported outcome measures such as general well-being and being free of worries, and patient reported experience measure, for example, access and continuity in diabetes care. All scales had acceptable test-retest reliability and could detect differences between diabetes types, age, gender and treatment subgroups. In several aspects, for example, freedom of worries, type 1 patients report lower than type 2, and younger patients lower than older. Associations were found between some scores and glycated haemoglobin, but none with systolic blood pressure or low-density lipoprotein cholesterol. Clinicians report positive experience of using scores, visually presented, in the patient dialogue.</p><p>CONCLUSIONS: The questionnaire measures and detects differences in patient well-being, abilities and judgements of diabetes care, and identifies areas for improvement. To further improve diabetes care, we conclude that patient-reported measures are important supplements to cardiovascular and diabetes complication risk factors, reflecting patient experiences of living with diabetes and diabetes care.</p>},
  articleno    = {e025033},
  author       = {Borg, Sixten and Eeg-Olofsson, Katarina and Palaszewski, Bo and Svedbo Engström, Maria and Gerdtham, Ulf-G and Gudbjörnsdottir, Soffia},
  issn         = {2044-6055},
  language     = {eng},
  month        = {01},
  number       = {1},
  pages        = {11},
  publisher    = {British Medical Journal Publishing Group},
  series       = {BMJ Open},
  title        = {Patient-reported outcome and experience measures for diabetes : development of scale models, differences between patient groups and relationships with cardiovascular and diabetes complication risk factors, in a combined registry and survey study in Sweden},
  url          = {http://dx.doi.org/10.1136/bmjopen-2018-025033},
  volume       = {9},
  year         = {2019},
}