Needs survey of Canadian rosacea patients

In 1995, a Rosacea Awareness Program (RAP) was initiated in Canada to make available educational resources for physicians and rosacea patients. Material is in French or English, and is accessible though physician offices and by toll-free telephone. Information was communicated to the public via noncommercial, editorial media. The RAP created a database of rosacea patients in Canada.

We investigated if individuals in the database had a confirmed diagnosis of rosacea, how they perceived their treatment by the medical system, and identified their needs.

A two-page questionnaire was mailed to 7874 individuals registered with the RAP. Thirty percent of these individuals responded. Where comparisons were made a chi-squared statistic was used.

Over 70% learned of the RAP via public media. It took patients an average of 5 years to have a diagnosis made after the first symptoms appeared. In the majority of patients (53%) the diagnosis was ultimately made by a specialist. Fifty-eight individuals said they had not discussed their condition with their doctor. Patients were likely to continue on medication that was prescribed (60%) and topical metronidazole was the most common medication used, mostly the gel formulation. Most patients used these twice daily. Patients were very satisfied with treatments and almost 90% had reduced symptoms. Despite receiving explanations and written material, patients expressed a strong interest in more information being available on skin care, make-up, and psychological aspects of rosacea.

The RAP provides a needed educational service and is a useful database. Patients are very knowledgeable about their disease, but despite this and excellent therapeutic responses, the patients demand more information.