Internet-supported gathering of treatment data and patient benefits in psoriasis

Studies about health care of psoriasis patients in Germany are predominantly carried out in dermatological centres, which results in a certain selection bias. To collect data from other sources of patients, the German Centre of Health Services Research in Dermatology conducted a series of web-based studies. The extent of how data on health care on psoriasis gathered online vary from paper and pencil data is yet to be explored.

1 To collect reliable treatment and benefit online data from psoriasis patients in Germany. 2 To compare these with data gathered at dermatological centres.

On the 'psoriasis-hilfe.de' web portal, psoriasis patients were asked to complete the online version of a questionnaire, which has already been used as a paper and pencil version in the national psoriasis study 'PsoHealth'. Subsequently, difference analyses were conducted between the two data sets.

The PsoWeb sample (n = 1071) varies to a high extent from the PsoHealth sample (n = 2009) regarding the achievement of treatment goals and treatment satisfaction. Irrespective of age, sex and duration of disease, the online sample showed lower treatment satisfaction and fewer patient-defined benefits.

The findings suggest that patients in the online sample are less satisfied with their health care, which also could have been their motive for participating online. It is important to gather data online because it increases the data pool and permits inclusion of people who are not incorporated in clinical settings. However, online data cannot directly replace data collected in clinics because they are also subject to selections.