A new survey by Health Union, titled “Psoriasis in America 2016,” has revealed that although psoriasis patients agree that a variety of treatment plans are available, they find it difficult to find one that satisfies their needs.
One result: many patients reported feeling isolated and stigmatized, acknowledging their disease has a heavy emotional toll. In total 582 people, a mix of plaque psoriasis and psoriatic arthritis patients, took part in the survey, conducted between April and June.
“Our hope is that some of the new medical advances will help more people with psoriasis find an effective course of treatment, and in turn ease the feelings of stigma and isolation many feel,” Tim Armand, Health Union president and co-founder, said in a press release. “Health Union’s PlaquePsoriasis.com looks to be a bridge, bringing together critical information with an accepting community and tools for overall health maintenance.” That reference is to a free and open online community forum that Health Union makes available to psoriasis patients.
It is estimated that nearly 125 million people worldwide, and 7.5 million in the U.S. alone, suffer from psoriasis. There is no cure for this chronic disease, marked by cycles of flares — often caused by external triggers — and remissions.
Respondents reported never knowing when or how often flares would occur or how severe they would be, and 64% reported flares more frequent than once a month – with half of these people reporting daily flares. In addition, 37% said their flares lasted longer than three months. The most common triggers were stress or anxiety (82%), weather (58%), and infection (22%).
Only one in three of all respondents said they were satisfied with their current treatment plan, and many were seen to switch among therapies over time.
“Finding the right treatment can be difficult for multiple reasons,” said Howard Chang, a PlaquePsoriasis.com community advocate. “With psoriasis, conditions can change and treatments can prove ineffective over time or simply stop working. Expense can be an issue, especially if insurance coverage changes or is lost. Many treatments are very inconvenient or come with challenging side effects.”
Phototherapy or light therapy was used at some point by 40% of the survey’s participants, but only 4% reported continuing to use this therapy. Corticosteroid use showed a similar trend, with 49% reporting having used it and 31% still on this therapy. In contrast, use of topical prescription or over-the-counter treatments was rising, with 36% saying they used it in the past and 57% currently using it. Recent biologic medicines for psoriasis are currently used by 26% of respondents.
The survey also showed the disease’s heavy emotional toll, and 58% of respondents said they wished they had known the full mental and physical impact of their disease at diagnosis.
Many reported wishing others would better understand the impact psoriasis has had on their lives. Along this line, 86% reported feeling embarrassed by their disease, 81% felt an emotional toll to the point of depression, and 66% reported feeling isolated or alone.
“The social, relational, and psychological aspects of plaque psoriasis cannot be overstated,” Chang said. “People often don’t understand the stigma of having a visible condition like psoriasis. In addition, there is the unpredictable nature of the condition. When you don’t have the stability, that can take quite a toll.”