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What is important for you?: A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register
Gothenburg Univ, Inst Med, Sahlgrenska Acad, Gothenburg, Sweden.;Dalarna Univ, Sch Educ Hlth & Social Studies, Falun, Sweden..
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism. Dalarna Univ, Sch Educ Hlth & Social Studies, Falun, Sweden..
Sophiahemmet Univ, Stockholm, Sweden.;Karolinska Inst, Dept Clin Sci & Educ, Stockholm, Sweden..
Gothenburg Univ, Inst Med, Sahlgrenska Acad, Gothenburg, Sweden.;Register Ctr Vastra Gotaland, Gothenburg, Sweden..
2016 (English)In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 6, no 3, e010249Article in journal (Refereed) PublishedText
Abstract [en]

Objectives There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes. Design Semistructured qualitative interviews analysed using content analysis. Setting Hospital-based outpatient clinics and primary healthcare clinics in Sweden. Participants 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). Inclusion criteria: Swedish adults (18years) living with type 1 DM or type 2 DM (duration 5years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics. Results To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme To live a good life with diabetes' constituting the two main categories How I feel and how things are going with my diabetes' and Support from diabetes care in managing diabetes' including five different categories. Conclusions Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

Place, publisher, year, edition, pages
2016. Vol. 6, no 3, e010249
Keyword [en]
National Category
Endocrinology and Diabetes
URN: urn:nbn:se:uu:diva-296875DOI: 10.1136/bmjopen-2015-010249ISI: 000374052300086OAI: oai:DiVA.org:uu-296875DiVA: diva2:940119
Novo NordiskSwedish Association of Local Authorities and Regions
Available from: 2016-06-20 Created: 2016-06-20 Last updated: 2016-06-20Bibliographically approved

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