title: 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.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  Semistructured qualitative interviews analysed using content analysis.
  
  
  METHODS
  Hospital-based outpatient clinics and primary healthcare clinics in Sweden.
  
  
  METHODS
  29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14).
  
  
  METHODS
  Swedish adults (≥ 18 years) living with type 1 DM or type 2 DM (duration ≥ 5 years) 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.
authors.affiliation: University of Gothenburg, Sahlgrenska Academy, Institute of Medicine, Gothenburg, Sweden Dalarna University, School of Education, Health and Social Studies, Falun, Sweden.
authors.forename: Maria
authors.identifier: http://orcid.org/0000-0002-8267-592X
authors.initials: M
authors.lastname: Svedbo Engström
authors.affiliation: Dalarna University, School of Education, Health and Social Studies, Falun, Sweden Uppsala University, Department of Medical Sciences, Uppsala, Sweden.
authors.forename: Janeth
authors.identifier: http://orcid.org/0000-0001-8682-2045
authors.initials: J
authors.lastname: Leksell
authors.affiliation: Sophiahemmet University, Stockholm, Sweden Karolinska Intitutet, Department of Clinical Sciences and Education, Stockholm, Sweden.
authors.forename: Unn-Britt
authors.initials: UB
authors.lastname: Johansson
authors.affiliation: University of Gothenburg, Sahlgrenska Academy, Institute of Medicine, Gothenburg, Sweden Register Center Västra Götaland, Gothenburg, Sweden.
authors.forename: Soffia
authors.initials: S
authors.lastname: Gudbjörnsdottir
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003922:Diabetes Mellitus, Type 1 / Q000628:therapy*; D003924:Diabetes Mellitus, Type 2 / Q000628:therapy*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D000071066:Patient Reported Outcome Measures; D011320:Primary Health Care / Q000592:standards*; D036301:Qualitative Research; D012042:Registries; D012648:Self Care / Q000592:standards*; D013548:Sweden; D055815:Young Adult
keywords: QUALITATIVE RESEARCH