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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 [Elektronisk resurs]

Borg, Sixten (författare)
Eeg-Olofsson, Katarina (författare)
Palaszewski, Bo (författare)
Svedbo Engström, Maria, 1968- (författare)
Gerdtham, Ulf-G (författare)
Gudbjörnsdottir, Soffia (författare)
Högskolan Dalarna Akademin Utbildning, hälsa och samhälle (utgivare)
Publicerad: 2018
Engelska.
Ingår i: BMJ Open. - 2044-6055. ; 9:1
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  • E-artikel/E-kapitel
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  • 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. 

Ämnesord

Medical and Health Sciences  (hsv)
Clinical Medicine  (hsv)
Endocrinology and Diabetes  (hsv)
Medicin och hälsovetenskap  (hsv)
Klinisk medicin  (hsv)
Endokrinologi och diabetes  (hsv)
Health and Welfare  (du)
Hälsa och välfärd  (du)

Genre

government publication  (marcgt)

Indexterm och SAB-rubrik

Diabetes
Item Response Theory (IRT)
Patient Reported Outcomes Measures (PROM)
Patient Reported Experience Measures (PREM)
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