Largest global psoriasis survey shows 85% of U.S. respondents faced social stigma like discrimination and humiliation because of their skin
Jun 29, 2016
- Global survey, including more than 1,400 U.S. moderate-to-severe psoriasis patients, is the first to look at perceptions of clear skin1
- Despite the significant impact of living with the disease, 52% of U.S. respondents do not believe clear or almost clear skin is a realistic goal1
- Leading experts call for psoriasis patients to talk to their dermatologist. For personal assistance in managing psoriasis contact the National Psoriasis Foundation's Patient Navigation Center at psoriasis.org/navigationcenter
EAST HANOVER, N.J., June 29, 2016 /PRNewswire/ --Novartis today released new results from its Clear About Psoriasis Survey, the largest global survey to date of people with moderate-to-severe psoriasis. Findings reveal 85% of U.S. respondents have suffered from social stigma like discrimination and humiliation because of their disease. In addition, U.S. results from the global survey show that 52% of psoriasis patients do not believe clear skin is a realistic goal for them.1
The survey, which is the first of its kind to explore perceptions of clear skin in psoriasis, was completed by over 8,300 people from 31 countries, including 1,415 from the U.S.1 With 25 groups from around the world, this is the largest collaboration between Novartis and patient organizations to develop and conduct a patient survey.
"The National Psoriasis Foundation is proud to partner with Novartis and other patient advocacy organizations around the globe to further highlight the daily challenges faced by those living with psoriasis," said Randy Beranek, president and CEO, National Psoriasis Foundation. "By participating in this survey, we hope to empower patients to work with their dermatologists to achieve a goal of clear or almost clear skin, which will assist in overcoming the impact of the social stigma of this disease."
The survey reveals nearly half (48%) of U.S. respondents have been asked if they are contagious, 45% reported they have been stared at while out in public and 48% noted they needed to do additional housework including cleaning up flakes or washing bloody or stained sheets.1
The devastating effect psoriasis can have on personal lives and people's emotional health was also revealed, with the survey showing 21% of respondents admit to hiding themselves away from the world. Additionally, 30% of respondents reported being diagnosed with depression and 27% diagnosed with anxiety.1
"My goal in joining the steering committee to develop the Clear About Psoriasis Survey was to not only reveal the deeper impact of psoriasis in a patient's life, but to also help ignite conversations between dermatologists and their patients," said April Armstrong, MD, MPH, Associate Dean for Clinical Research, Keck School of Medicine, University of Southern California and Medical Board Member for the National Psoriasis Foundation. "As a dermatologist, I was concerned to learn that so many psoriasis sufferers don't think clear or almost clear skin is a possibility, which reinforces the importance of patients talking to their dermatologists."
The impact of psoriasis can extend beyond the individual living with the disease and can affect loved ones. More than half of U.S. survey respondents (51%) noted that psoriasis has impacted past or current relationships. It can be specifically difficult on intimate relationships, with less than one-third (28%) stating they feel their partner loves them just the way they are.1
Psoriasis patients are encouraged to work closely with their dermatologist on managing their disease. More information and support is available through the National Psoriasis Foundation's Patient Navigation Center, a personalized support center for people living with psoriasis. More information can be found at www.psoriasis.org/navigationcenter.
About psoriasis Affecting about 7.5 million Americans, psoriasis is a chronic immune-mediated disease characterized by thick and extensive skin lesions (plaques), which can cause itching, scaling, and pain.2 Patients reported these symptoms can negatively impact their quality of life, both psychosocially and physically, which makes daily functioning difficult.3,4,5 Additionally, patients with psoriasis are at increased risk for other chronic illnesses.6
About the survey Novartis initiated and funded the survey, which was conducted by the market research company Gesellschaft für Konsumforschung (GfK) Switzerland. The survey was supported by a prestigious steering committee of medical experts from around the world. With 8,338 participants, including 1,415 patients from the U.S., this is the largest survey to date of people living with moderate-to-severe psoriasis and is the first survey of its kind to focus on what achieving clear skin means to the quality of life for people with psoriasis. The results of the survey will be submitted for publication in a clinical journal and will be presented at the 25th European Association of Dermatology and Venereology (EADV) Congress.
Participants in the survey come from the following 31 countries; Argentina, Australia, Austria, Belgium, Brazil, Bulgaria, Canada, Czech Republic, Denmark, Finland, France, Germany, Hungary, India, Ireland, Israel, Italy, Japan, Mexico, Netherlands, Norway, Portugal, Romania, Russia, South Korea, Sweden, Switzerland, Taiwan, Turkey, UK and the U.S.
As with any survey, there are certain limitations that should be considered when reviewing the data. The Clear About Psoriasis Survey included patients who voluntarily participated, which means they agreed to sharing personal information, in general or related to their condition. Patients were recruited through both online panels and patient advocacy groups. Those recruited through panels had previously signed up to participate in market research. Participants recruited through patient advocacy groups had been engaged with the groups in some way, such as accessing their website or signed up for a newsletter distribution list. An online methodology was used, which may have limited the participation of some respondents, including older, hard to reach participants with limited access to computers or the internet. Psoriasis scoring, although user friendly and with visual aids, was self-reported. Respondents were provided the option of skipping sensitive questions.
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About Novartis Located in East Hanover, New Jersey, Novartis Pharmaceuticals Corporation is an affiliate of Novartis AG, which provides innovative healthcare solutions that address the evolving needs of patients and societies. Headquartered in Basel, Switzerland, Novartis offers a diversified portfolio to best meet these needs: innovative medicines, eye care and cost-saving generic pharmaceuticals. Novartis is the only global company with leading positions in these areas. In 2015, the Group achieved net sales of USD 49.4 billion, while R&D throughout the Group amounted to approximately USD 8.9 billion (USD 8.7 billion excluding impairment and amortization charges). Novartis Group companies employ approximately 118,000 full-time-equivalent associates. Novartis products are available in more than 180 countries around the world. For more information, please visit http://www.novartis.com.