News and Events News Archive

Survey: What People With Psoriasis Are Saying

First posted April 2002

The Survey
In December 2001, the National Psoriasis Foundation (NPF) conducted a random telephone survey to develop an accurate measure of the number of people with psoriasis in the United States. The NPF followed up with these individuals, as well as with its own members and others who had requested information previously, to measure the impact of the disease on people's quality of life and to gauge satisfaction with available treatments, relationships with physicians, and their knowledge of and feelings about the services provided by the NPF.

Below, please find an overview of these results.

Prevalence

• 4.4 million U.S. adults have psoriasis. This is 2.1 percent of the U.S. adult population.
• 1.5 million people have moderate to severe disease, with plaques covering more than 3 percent of their body (3 percent to 10 percent coverage defined as moderate disease, more than 10 percent as severe).

Quality of Life Impact

• People with moderate to severe disease reported larger quality of life impacts than those with mild forms of psoriasis.
• One third of people with moderate to severe disease say their psoriasis is a very large problem in their life.
• 75 percent of people with moderate to severe disease report that their psoriasis has a moderate to large impact on their everyday lives:
• 26 percent alter their normal daily activities.
• 21 percent stop their normal daily activities.
• 40 percent say their psoriasis affects their clothing choices (avoiding dark colors, covering up arms and legs).
• 36 percent say it affects how they sleep.
• 36 percent report bathing more than normal.

Treatment

• About 25 percent of people with psoriasis are very unsatisfied with their psoriasis treatment, and one-third of people with moderate to severe disease report that they are very unsatisfied with their overall treatment.
• The top-reported reasons for stopping medications are their side effects and that they don't work.
• The majority of people with moderate to severe psoriasis are not using the most aggressive treatments for the disease:
• Only 35 percent of people with moderate to severe psoriasis have ever tried phototherapy or systemic therapy, which are more aggressive treatments.
• Only 22 percent of people with moderate to severe psoriasis are currently using either phototherapy or systemic therapy.

Relationship with Physicians

• More than half of people with moderate to severe disease have seen two to five doctors for their psoriasis in the past two years.
• Overall, patients feel their physicians listen and care, but more than 25 percent of people with moderate to severe disease are very unsatisfied with the lack of aggressive treatment and the information doctors provide them about their disease.

Knowledge of NPF and Benefits of Membership

• 30 percent of the random survey group was aware of the NPF.
• As a group, NPF members tend to have more severe psoriasis than non-members.
• NPF members appear to cope better with psoriasis:
• They view their disease as less of a problem in their everyday life.
• They are more aware of their options.
• They are more informed about treatments.
• They have tried more ways of treating their psoriasis.