title: Feasibility of using self-reported patient data in a national diabetes register.
abstract: BACKGROUND
  In order to improve recruitment of patients to the Norwegian diabetes register for adults, a questionnaire was designed to collect data directly from patients. The main aim of this study was to assess the agreement of questionnaire data with data reported to the Register from health care personnel during routine consultations.
  
  
  METHODS
  Patient data were obtained by sending a questionnaire with 27 of the 41 Register variables to 3714 members of the Norwegian Diabetes Association. Questionnaire data were compared with data already in the Register. Paired t-tests, percentages of total agreement, percentages of "positive" answers and kappa coefficients (k) were used for comparing data.
  
  
  RESULTS
  Of the 1645 replies (44.3 %), the Register already had data on 324 patients for comparison. Response rate for most variables was better from patients (ranging from 76-100 %) compared with health care professionals (33-100 %). For 17 of 25 assessable variables including diabetes duration, height, weight, HbA1c, drug treatment and several diabetes complications, agreement was substantial or better with kappa >0.60. Data on family history of premature heart disease (k-0.59), foot examination (k = 0.26), foot ulcer (k = 0.32) and arterial surgery (k = 0.24) seemed to be difficult to answer by patients, whereas data on physical activity and self-monitoring of glucose seemed to be better when reported by patients.
  
  
  CONCLUSIONS
  Patient response rate was acceptable, and data had good concordance with data from health care professionals for most variables. However, registers using patient questionnaires should compare questionnaire data with data from professionals at regular intervals.
authors.affiliation: Norwegian Diabetes register for adults, Norwegian Center for Quality Improvement of Primary Care Laboratories (NOKLUS), Boks 6165, 5892, Bergen, Norway. karianne.loevaas@noklus.no.
authors.forename: Karianne Fjeld
authors.initials: KF
authors.lastname: Løvaas
authors.affiliation: Norwegian Diabetes register for adults, Norwegian Center for Quality Improvement of Primary Care Laboratories (NOKLUS), Boks 6165, 5892, Bergen, Norway. john.graham.cooper@sus.no.
authors.forename: John G
authors.initials: JG
authors.lastname: Cooper
authors.affiliation: Norwegian Diabetes register for adults, Norwegian Center for Quality Improvement of Primary Care Laboratories (NOKLUS), Boks 6165, 5892, Bergen, Norway. sverre.sandberg@noklus.no.|Department of Global Public Health and Primary Care, University of Bergen, Postboks 7804, 5018 Bergen, Norway. sverre.sandberg@noklus.no.|Laboratory of Clinical Biochemistry, Haukeland University Hospital, Postboks 1400, 5021, Bergen, Norway. sverre.sandberg@noklus.no.
authors.forename: Sverre
authors.initials: S
authors.lastname: Sandberg
authors.affiliation: Norwegian Diabetes register for adults, Norwegian Center for Quality Improvement of Primary Care Laboratories (NOKLUS), Boks 6165, 5892, Bergen, Norway. Thomas.roraas@noklus.no.|Department of Global Public Health and Primary Care, University of Bergen, Postboks 7804, 5018 Bergen, Norway. Thomas.roraas@noklus.no.|Haraldsplass Deaconess Hospital, Postboks 6165, Postterminal, 5892 Bergen, Norway. Thomas.roraas@noklus.no.
authors.forename: Thomas
authors.initials: T
authors.lastname: Røraas
authors.affiliation: Norwegian Diabetes register for adults, Norwegian Center for Quality Improvement of Primary Care Laboratories (NOKLUS), Boks 6165, 5892, Bergen, Norway. geir.thue@uib.no.|Department of Global Public Health and Primary Care, University of Bergen, Postboks 7804, 5018 Bergen, Norway. geir.thue@uib.no.
authors.forename: Geir
authors.initials: G
authors.lastname: Thue
mesh_terms: D000328:Adult; D015190:Blood Glucose Self-Monitoring / Q000706:statistics & numerical data*; D003625:Data Collection; D003922:Diabetes Mellitus, Type 1 / Q000453:epidemiology*; D003924:Diabetes Mellitus, Type 2 / Q000453:epidemiology*; D005240:Feasibility Studies; D005260:Female; D006282:Health Personnel; D006801:Humans; D008297:Male; D008875:Middle Aged; D009043:Motor Activity; D009664:Norway / Q000453:epidemiology; D015203:Reproducibility of Results; D057566:Self Report; D011795:Surveys and Questionnaires