Imagine a goal that once seemed out of reach — say, running a mile in under four minutes.
“At first it didn’t seem possible,” said April Armstrong, M.D., a dermatologist at the University of Southern California and member of the National Psoriasis Foundation Medical Board. “But then someone did it. And now people do it all the time.”
No longer deemed unattainable, today the four-minute mile is the standard for which all runners strive. Now NPF’s Medical Board has set a goal for psoriasis treatment that it hopes will become the new standard of care. The goal was published in an article that appeared in November 2016 in the Journal of the American Academy of Dermatology.
Also known as a treatment target, the goal is to reduce the severity of psoriasis so it only covers 1 percent or less of the body. It’s a target that may seem tough to achieve — just like the four-minute mile once did. But with the growing number of treatments available and increased understanding of the disease, the goal could soon be achieved by everyone with psoriasis.
Treatments, targets, and timing
People with psoriasis and dermatologists came together to develop the targets, which encompass not only the treatment goals but also how long it should take to reach them. These are the first treatment targets for psoriasis in the U.S. The targets were developed through a lengthy process of research, discussion, and consensus-building among NPF Medical Board members, other leaders in the field of dermatology, and psoriasis patients.
What resulted is a consensus on to what degree and how soon a patient and health care provider should strive to get clear or almost clear skin.
Here are the specifics: The goal is to get your psoriasis down to covering 1 percent of your body surface area or less about three months after starting a new treatment. The entire hand (the palm, fingers, and thumb) is equal to about 1 percent of your body surface area. Once you’ve reached that 1 percent goal, you should check in with your doctor every six months or so to make sure you’re still experiencing the same amount of clearance.
But what do you do if, after three months, you still have more than 1 percent of your body covered in psoriasis?
If you’re experiencing some improvement, one option is to wait and see. In addition to the treatment target, the recommendations also offer what can be considered an “acceptable response” after three months — either your psoriasis covers 3 percent or less of your body, or you’ve experienced a 75 percent improvement.
Meeting the acceptable response could be a sign that the treatment is starting to work but may just need a little more time to reach the goal, according to Dr. Abby Van Voorhees, chair of NPF’s Medical Board and a dermatologist at Eastern Virginia Medical School in Norfolk, Virginia.
In that case, you may stay on the therapy and evaluate your options in another three months. But if you’re not seeing enough improvement, it’s probably time to make some adjustments to your treatment.
“If a patient has absolutely no response after three months, that’s probably a clue that I’d better be thinking about some other things for the patient,” Dr. Van Voorhees said. “On the other hand, if a patient has had a partial response, but maybe it’s not quite where I want it to be at that moment, then giving the medication a little longer might be needed. In that situation, I might give the medication the full six months to see if it will be effective.
“But at the end of six months of treatment, a patient should have achieved these goals.”
No one-size-fits-all treatment
That’s a big vote of confidence in the ability of psoriasis treatments to give everyone dramatically clearer skin. Before recent advances in therapeutic options, meeting this target may not have been possible.
“When I began my career, we had two or three treatment options, total,” said Dr. Van Voorhees. “There was a lot more tolerance for poor outcomes since the medications were not as effective and had more frequent potential side effects. The ability to achieve success was therefore so much more limited. But now we have so many more options that can work for somebody.”
Eric Fielding, 53, of Herndon, Virginia, was one of the patients involved in developing the targets. He’s had psoriasis for about 25 years and has witnessed firsthand the advances in treatment that could make clear skin the expectation for all people with psoriasis.
Before the introduction of biologics, he said, topicals were often the go-to — but with limited success.
“Now, I think that targets are more realistic. People can achieve results. But when I first started (treatment) back in the ’90s, it was more like, ‘You have eight spots. Let’s see if a different brand of cortisone will work,’” he recalled. For Fielding, it was an older treatment that finally did the trick for him. Two years ago, he started seeing a new dermatologist, who put him on narrowband phototherapy.
Phototherapy “has been a godsend,” he said. “I literally had something like 75 to 80 psoriasis spots all over my body a year-and-a-half ago. And now I’m down to three or four.”
While the recommendations are very precise about the goals of treatment, they don’t offer specifics on which treatments should be used to attain them. Many different treatment options could be used to meet the target goals, Dr. Van Voorhees noted.
“For example, if I had a patient who had persistent lesions on their legs, it could be that really what’s required for that patient is to supplement the treatment that they’re on with topical medicines, or potentially adding a second medication into the regimen. Or it could be switching therapies. It really very much depends on that individual,” Dr. Van Voorhees said.
The range of available therapies should help doctors and patients stay optimistic as they search for the right treatment.
“I try to explain to my patients that it may take a couple of tries before we find the regimen that works best for them or that they like the best. I try to set that stage right at the beginning,” Dr. Van Voorhees explained.
“It can be very disheartening for a patient if they try something and have it not work or cause side effects that require stopping that treatment. Then they get discouraged.”
But understanding from the outset that they may need to try a few different options can lead to a much more positive experience.
“Then they come back in with the idea in their mind, ‘This one didn’t work. What’s next?’ As opposed to, ‘This one didn’t work. Now I have no hope,’” she said.
How to Meet the Target
Alan Simmons, who was also involved in the development of the targets, has had psoriasis for more than three decades. For him, the targets can help doctors and patients find their way through what can be a frustrating process of finding the right treatment.
“We can provide a road map to follow to ask the right questions at the right time,” he said.
His goals for treatment have changed over the years.
“There was a time in my life when I had approximately 75 percent coverage. My target then was just to be able to wear shorts and T-shirts,” he said. “Now that I have less than 1 percent coverage, my target is to maintain my current treatment as long as possible.”
He and Fielding both emphasize that it’s important for doctors to understand the individual goals and concerns of each patient. Fielding, for example, noted that other aspects of psoriasis — beyond the amount of the body that’s covered — are important to people with the disease.
“There’s itching, there’s pain, there’s parts of the body,” he said. Having psoriasis on the genitals, or on the palms of the hands or soles of the feet, for instance, can have a big impact on someone’s quality of life, he explained. “Basically, from a patient’s perspective, I think the most important thing is improvement,” Fielding said.
Dr. Armstrong hopes that these treatment targets will get patients and doctors talking about different therapeutic approaches.
“I think it’s really opening up the dialogue for all of the different options,” he said.
Treatment goals can be part of an ongoing conversation between doctors and people with psoriasis, covering everything from what a particular person wants to get out of treatment to why some therapies may be better than others.
“Psoriasis is a complex and unpredictable disease,” said Simmons. He advises others living with psoriasis to find a doctor with whom they can openly discuss the challenges they may experience.
“If you don’t have that feeling, you need a new doctor,” he said.
Fielding has developed his own formula for achieving treatment goals. “You have to have a balance of acceptance, confidence, and trust: Acceptance of your condition, confidence in yourself, and trust in your doctor,” he said. “If a patient embraces those qualities in themselves and their doctors, the path to improvement is there.”
By Melissa Leavitt for NPF
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Celebrating 50 years of patient support, advocacy, research funding, and education, the National Psoriasis Foundation (NPF) is the world’s leading nonprofit fighting for individuals with psoriasis and psoriatic arthritis. NPF is on a continued mission to drive efforts to cure psoriatic disease and dramatically improve the lives of more than 8 million Americans affected by this chronic immune mediated disease. As part of that effort, the NPF created its Patient Navigation Center to offer personalized assistance to everyone impacted by psoriasis or psoriatic arthritis. In addition, the NPF has funded more than $17 million in research grants and fellowships to date.