Increasing response rate in data registration and follow‐up of children and adolescents with type 1 diabetes: A prospective population study 1992–97

Abstract

AimsThis study considers how a local diabetes team can develop a system for patient data registration and follow-up to enhance quality control and health economic analysis, and how a high response rate forpatient data can be achieved. Patients and methodsA geographic population of yearly 120-130 intensively treated type 1 diabetes children.< 19 years of age was studied. A prospective patient questionnaire monitored: blood glucose and urine testing, insulin doses, acute complications, medications for hypertension and epilepsy, tobacco and snuff use, and any open questions and needs of the patient. This was completed before every visit to the out-patient department and used as a database for consultation. Data were thereafter registered in regular computer software, and analysed on a yearly basis. ResultsResponse rate increased with time to near 700%. There was a time gain for diabetes nurse and physician. Many patients found the questionnaire good for overviewing treatment and easy to complete, whereas some found it was irksome and boring. The total cost of the method was <1 60 S€K/patient year. ConclusionsA very high patient data response rate can be achieved over years by a patientsupportive questionnaire integrated in the treatment program. Treatment and outcome analysis can then be performed locally at low costs. The combination of a patient questionnaire with regular hard-and software is easy to create, manage and develop. Benefits for diabetes team and patients exceed the total cost. 1 999; 16(4): 1 01 -1 06 Practical Diabetes lnt

Seasonal Variation of HbA1c in Intensive Treatment of Children with Type 1 Diabetes

“…HbAi c values were determined at each visit, and registered by a method described elsewhere 24 . Patients were scheduled at three months intervals, but seen more often when needed.…”

“…Severe hypoglycaemia was prospectively registered at every visit, in two categories: "...that demanded help by another person, but without causing unconsciousness" and "...with unconsciousness", as described earlier 24 …”

Short‐term effects of severe hypoglycaemia in children and adolescents with type 1 diabetes. A cost‐of‐illness study

“…The forms were distributed at each visit to the clinic, scheduled quarterly, and returned at the next visit to the diabetes nurse. The number of forms completed was compared with data from a well-established long-term prospective registration of severe hypoglycaemia used in this clinic and described earlier (7,17). Severe hypoglycaemia was also de ned in this study as selfreported by the patients and/or families, and without other inclusion or exclusion criteria.…”

“…Severe hypoglycaemia was also de ned in this study as selfreported by the patients and/or families, and without other inclusion or exclusion criteria. By means of separate questions it was divided into two categories, with unconsciousness (U) or without unconsciousness but needing the assistance of another person (NU) (7,17).…”

“…However, we have found no speci c estimations of costs for acute complications due to insulin treatment. Primary data would be necessary for this, but our previous ndings indicate that events of severe hypoglycaemia are less frequently registered in case records (17). Reliable data on the bene ts, complications, costs and social effects of medical treatments are often lacking (18,19).…”