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

Research output: Contribution to journalArticle


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.


External organisations
  • Sahlgrenska University Hospital
  • Västra Götalandsregionen
  • Dalarna University
  • IHE – The Swedish Institute for Health Economics
  • University of Gothenburg
  • Registercentrum Västra Götaland
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Health Care Service and Management, Health Policy and Services and Health Economy
  • Endocrinology and Diabetes
Original languageEnglish
Article numbere025033
Number of pages11
JournalBMJ Open
Issue number1
Publication statusPublished - 2019 Jan 4
Publication categoryResearch

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