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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
Lund University, Department of Clinical Sciences in Malmö, Health Economics Unit, Medicon Village, SE-223 81 Lund, Sweden.ORCID iD: 0000-0001-6292-7002
University of Gothenburg, Sahlgrenska Academy, Institute of Medicine, SE-413 46 Gothenburg, Sweden and Sahlgrenska University Hospital, Gothenburg, Sweden.
Region Västra Götaland, Department of Data Management and Analysis, SE-405 44 Gothenburg, Sweden.ORCID iD: 0000-0002-4854-2701
Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. University of Gothenburg, Sahlgrenska Academy, Institute of Medicine, SE-413 46 Gothenburg, Sweden.ORCID iD: 0000-0002-8267-592X
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2018 (English)In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 9, no 1, article id e025033Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2018. Vol. 9, no 1, article id e025033
Keywords [en]
Diabetes, Item Response Theory (IRT), Patient Reported Outcomes Measures (PROM), Patient Reported Experience Measures (PREM)
National Category
Endocrinology and Diabetes
Research subject
Health and Welfare
Identifiers
URN: urn:nbn:se:du-29178DOI: 10.1136/bmjopen-2018-025033PubMedID: 30612113Scopus ID: 2-s2.0-85059500159OAI: oai:DiVA.org:du-29178DiVA, id: diva2:1273648
Available from: 2018-12-21 Created: 2018-12-21 Last updated: 2019-01-21Bibliographically approved

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Svedbo Engström, Maria

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