Health care service in Cushing's syndrome: Establishment and evaluation of an electronic questionnaire

Aims: Cushing's syndrome is associated with an increased mortality and morbidity. Nevertheless a correct diagnosis of this rare disease is often delayed due to slow development and identification of typical clinical features, resulting in a poor prognosis and change for cure. Documentation of patient data into large multicenter databases results in better understanding of the disease. However data quality in these registries depends on the expertise and documentation standards of each local physician, restricting the comparability of datasets between different databases.

Methods: In line with quality assurance in an endocrine practice and in order to verify whether patients were diagnosed and treated according to accepted standards, an electronic questionnaire based on the corresponding guidelines was established. Data entry of 61 patients happened via a simple, web-based user interface and involved signs and symptoms as well as biochemical results at diagnosis, therapy and current status of each patient. On the one hand data output was implemented as an automated standardized report illustrating the status of care at the local site at a glance. On the other hand it was possible to export the whole dataset into a common database format allowing further specific data analysis.

Results and conclusion: Analysis of data elucidates local health care provision in patients with Cushing's syndrome in an adequate manner, allowing an unambiguous correlation of etiology, therapy and current status of each patient. The analysis further helped to reflect treatment strategies and to identify room for improvement. However, more detailed questions aside from clinical routine, e.g. health care economics can not be addressed in a retrospective approach in general. An ongoing, prospective approach would therefore be preferable to standardize treatment according to the effective guidelines. A simple electronic tool like the one presented here may provide a firm basis for this.

Fig. 1: Cush