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

Aims

This 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 for patient data can be achieved.

Patients and methods

A 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.

Results

Response rate increased with time to near 100%. 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 <160 SEK/patient year.

Conclusions

A 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.