The National Psoriasis Foundation, The Dermatology Nurses Association, dermatologists and people with psoriasis join forces to launch Beyond Psoriasis: The Person Behind the Patient
WASHINGTON, DC – February 9, 2004 – People with psoriasis experience a crisis in self-confidence so severe it can darken almost every aspect of life, from the quality of a person’s love life to performance on the job and day-to-day social interactions. People report feeling like social outcasts and being misunderstood by the public. These are some of the dramatic insights gleaned from a new survey of people with moderate-to-severe psoriasis. Psoriasis is a chronic, life-altering disease that affects more than 4.5 million adults or 1 in 50 people in the United States.
The survey is the most comprehensive study to date to specifically examine the social and emotional effects of psoriasis. It also illustrates the need for a public education and support program for people with psoriasis. Beyond PsoriasisSM: The Person Behind the Patient, is a unique collaboration of health providers, advocates and people with psoriasis including the National Psoriasis Foundation and the Dermatology Nurses Association (DNA). The new program launched today at the 62nd Annual Meeting of the American Academy of Dermatology (AAD).
"Comprehensive care of psoriasis goes beyond treating the symptoms. This survey validates the need for an understanding about how psoriasis can impact a patient's social life and emotional and physical well-being," said Alan Menter, MD, Chief of the Division of Dermatology at Baylor University Medical Center and a member of the Beyond Psoriasis Advisory Board. "I am committed to this program and its objectives to provide education, sensitivity and support to these individuals similar to what is available for other chronic diseases like heart disease or arthritis. Otherwise, the patient's psoriasis is not fully managed."
Psoriasis occurs when the new skin cell growth rapidly accelerates, resulting in thick, red, scaly, inflamed patches on the skin's surface. Plaque psoriasis is the most common form of the disease, and is characterized by inflamed patches of skin ("lesions") topped with silvery white scales. Psoriasis can be limited to a few spots or involve extensive areas of the body, appearing most commonly on the scalp, knees, elbows and trunk. Although it is highly visible, psoriasis is not a contagious disease. While there is no known cure for psoriasis, there are a number of treatment options available including topical creams and ointments, phototherapy, systemics and most recently biologic therapies which offer new hope to psoriasis sufferers.
Key Survey Findings
Conducted in December 2003 by the NFO, a leading market research firm, the survey sampled 502 people with moderate-to-severe psoriasis to determine the effect the disease has on four crucial aspects of life: self-esteem, work/school, relationships (including sex life and intimacy) and social interactions. Most strikingly, three-quarters (73%) of people with severe psoriasis and about half (48%) of people with moderate psoriasis reported low self-confidence serious enough to affect virtually all aspects of life. Further, the survey found that one of the driving forces behind these feelings is a perceived lack of understanding among the general public. Less than one in ten people surveyed (8%) feel that society understands the disease. Sixty-seven percent say the public is ignorant about psoriasis, 64% say the public is afraid that the disease may be contagious, 56% say the public is disgusted by psoriasis and 45% say that people with psoriasis are often the "object of ridicule."
Findings of an Omnibus Survey of 1,000 adult Americans, conducted by Opinion Research Corporation International (ORC) in December 2003, found that the vast majority of respondents (88%) have heard of psoriasis and that almost half (46%) knew someone with psoriasis. The findings showed that although the public is not aware of the prevalence of the disease (93% were not aware that 4.5 million Americans have psoriasis), 86% of the respondents did know that psoriasis is not contagious and 52% were aware that psoriasis is more emotionally crippling than physically disabling.
"I'm really surprised that so many people know that psoriasis is not contagious. I have psoriasis, and when I have a flare up, I am really self-conscious. I know that people stare and stay away from me because they think I am contagious," said Mike Frisbie, a member of the Beyond Psoriasis Advisory Board and psoriasis patient. "Part of what we want to do with this program is to help people with psoriasis feel more comfortable with discussing the disease and to learn ways to cope with the self-defeating attitudes that can cast a shadow over many aspects of our lives. We want to help empower others to speak up about their disease with their doctor, their friends, acquaintances and loved ones, and in doing so, help them continue their lives in a positive way."
Negative effects were most dramatically experienced by people with psoriasis who are 18-24 years old – a population just beginning to develop their self-esteem and interpersonal relationships that will influence the rest of their lives. Women, single people and those who have visible psoriasis (usually on their face and/or scalp) were most impacted.
Many people with psoriasis had problems with sex and intimacy. In fact, four in ten people with psoriasis (38%) agreed that the disease affects their sex life/intimacy. The problems are more prevalent for those who are single. Feelings of worry are common.
In general, the people surveyed felt that their family and friends understand their psoriasis and are supportive. Understanding of family could be driven by genetics: almost half (45%) of the people surveyed have at least one family member with psoriasis. Of those, the majority (62%) has at least one parent who has psoriasis. 81% are worried and 76% feel guilty that they might pass psoriasis on to their children.
Most people with psoriasis avoid public interaction, dress to hide their condition and feel like outcasts (64%). Psoriasis affects daily interactions for four in ten (38%) respondents. For those with severe psoriasis, this increases to 57%.
Work and school can be particularly problematic for people with psoriasis. One-third (37%) of all people with psoriasis agree that the disease affects work/school.
About Beyond Psoriasis: The Person Behind the Patient
In response to the need for increased public awareness and support of people with psoriasis, the National Psoriasis Foundation, DNA, dermatologists and people with psoriasis have collaborated to launch Beyond Psoriasis: The Person Behind the Patient. Beyondpsoriasis.com is a new website that provides people with psoriasis a resource that offers information, coping tips and lessons learned by others with psoriasis on managing the emotional and social challenges of this disease.
"By providing information and support, Beyond Psoriasis can help reduce the social stigma that the survey suggests may be a primary driver of low self-confidence," said Gail Zimmerman, President and Chief Executive Officer of the National Psoriasis Foundation. "With support from healthcare professionals and others with the disease, people with psoriasis can help to build widespread public awareness and at the same time become more confident spokespersons about their disease. That public awareness, in turn, will lessen the social pressures, completing the circle of positive communication and support."
Members of the Advisory Board include:
Alan Menter, MD, Chief, Division of Dermatology, Baylor University Medical Center and Clinical Professor of Dermatology, University of Texas Southwestern Medical School (Dallas, TX)
David M. Pariser, MD, Professor, Department of Dermatology, Eastern Virginia Medical School
Gail Zimmerman, President and Chief Executive Officer, National Psoriasis Foundation. The National Psoriasis Foundation is the largest nonprofit organization in the United States dedicated to improving the quality of life of people with psoriasis and psoriatic arthritis and their families. It receives its principal support from public donations. Its mission is to educate people about these diseases and their treatments, raise public awareness, and support ongoing research. For more information on the National Psoriasis Foundation, visit www.psoriasis.org.
Melodie Young, MSN, RN, ANP-C, member of The Dermatology Nurses Association. DNA is a professional nursing organization comprised of a diverse group of individuals committed to quality care through sharing knowledge and expertise. DNA believes that the quality of patient care is greatly enhanced through the promotion of education for nurses in the specialty of dermatology based on research and committed to the testing and sharing of new ideas. For more information on DNA, visit dnanurse.org.
Vickie Dowling, Psy.D., Person with psoriasis
Michael Frisbie, Person with psoriasis
Vanessa Quaglia, Person with psoriasis
Beyond Psoriasis: The Person Behind the Patient is supported by Genentech.
Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes biotherapeutics for significant unmet medical needs. Seventeen of the currently approved biotechnology products originated from or are based on Genentech science. Genentech manufactures and commercializes 12 biotechnology products in the United States. The company has headquarters in South San Francisco, California and is traded on the New York Stock Exchange under the symbol DNA. For additional information about the company, please visit http://www.gene.com.