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  • 1.
    Borg, Sixten
    et al.
    Lund University, Department of Clinical Sciences in Malmö, Health Economics Unit, Medicon Village, SE-223 81 Lund, Sweden.
    Eeg-Olofsson, Katarina
    University of Gothenburg, Sahlgrenska Academy, Institute of Medicine, SE-413 46 Gothenburg, Sweden and Sahlgrenska University Hospital, Gothenburg, Sweden.
    Palaszewski, Bo
    Region Västra Götaland, Department of Data Management and Analysis, SE-405 44 Gothenburg, Sweden.
    Svedbo Engström, Maria
    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.
    Gerdtham, Ulf-G
    Lund University, Department of Clinical Sciences in Malmö, Health Economics Unit, Medicon Village, SE-223 81 Lund, Sweden; The Swedish Institute for Health Economics (IHE), Box 2127, SE-220 02 Lund, Sweden; Department of Economics, School of Economics and Management, Box 7082, SE-220 07 Lund, Sweden.
    Gudbjörnsdottir, Soffia
    University of Gothenburg, Sahlgrenska Academy, Institute of Medicine, SE-413 46 Gothenburg, Sweden and Centre of Registers Västra Götaland, SE-413 45 Gothenburg, Sweden.
    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 Sweden2018In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 9, no 1, article id e025033Article in journal (Refereed)
    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.

  • 2.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Department of Molecular and Clinical Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Uppsala University.
    Johansson, Unn-Britt
    Sophiahemmet University, Stockholm, Sweden; Karolinska Institutet, Department of Clinical Sciences and Education, Södersjukhuset, Stockholm, Sweden.
    Borg, Sixten
    Lund University, Department of Clinical Sciences in Malmö, Health Economics Unit, Medicon Village, Lund, Sweden.
    Palaszewski, Bo
    Region Västra Götaland, Department of Data Management and Analysis, Gothenburg, Sweden.
    Franzén, Stefan
    Register Center Västra Götaland, Gothenburg, Sweden.
    Gudbjörnsdottir, Soffia
    Department of Molecular and Clinical Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Register Center Västra Götaland, Gothenburg, Sweden.
    Eeg-Olofsson, Katarina
    Department of Molecular and Clinical Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Sahlgrenska University Hospital, Gothenburg, Sweden.
    A new diabetes questionnaire to add patients’ perspectives to diabetes care: A nationwide cross-sectional study among adults with type 1 and type 2 diabetes.2019Conference paper (Refereed)
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