Back when Jon Fine, now 44, was studying for the bar exam, he couldn’t allow his severe psoriasis to be a distraction. So he walked into his doctor’s office and bluntly told her “to do something dangerous” to stop the itch and unpleasantness, no matter the consequences.
His dermatologist, Alexa B. Kimball, M.D., MPH, who practices dermatology at Beth Israel Deaconess Medical Center in Boston, said Fine’s instructions told her how important it was to him to be able to concentrate on his studies and get through the exam. They agreed on a short-term solution: cyclosporine, an immunosuppressant, one of the few choices at the time.
Over the years, Fine’s willingness to be open and honest with Kimball has helped her treat him in a way that ensures the best possible outcomes. It is important, she said, that doctors understand their patients’ treatment goals. In return, Fine, of Mansfield, Massachusetts, said Kimball is a good listener, which has made their doctor-patient relationship a successful one.
Fine and Kimball appear to have struck gold, as forging a strong relationship between patient and health care provider is not always an easy task, said Bruce Lambert, Ph.D., director of the Center for Communication and Health at Northwestern University in Chicago. But when you have a chronic disease, such as psoriatic disease, it’s especially important to get along with your provider and have open lines of communication to ensure that you are both on the same page, he said.
“Ideally, you want to have a long-term relationship with this provider,” said Lambert. “Your psoriasis is not going to go away, and as long as you live in the same area, you will see your provider regularly.”
Lambert said it is incumbent upon patients to “shop around” for a provider with whom they click. Unless you have an insurance plan that offers only one dermatologist or one rheumatologist who treats psoriatic arthritis, it’s worth spending the time to find the right provider for you and your personality, he said. Sometimes it’s a matter of luck, but patients should never feel as though they can’t speak up or make changes if the provider they’re seeing isn’t a good fit.
Kimball said many patients fear physicians will be insulted if they are unhappy or uncomfortable with their treatment and prefer to move to another provider, but that is not the case.
“No one is going to be offended personally if a patient wants to get a second opinion or explore other options,” she said. “At the end of the day, what your provider wants is for you to get the best care for you.”
Patience and preparation a must
Creating a strong relationship with a physician requires that patients come to their appointments well-prepared. When patients make their treatment goals clear to Kimball, as Fine did, it helps her choose among available options for treatment of their disease and its severity, she said.
Some patients say to her, “I really trust you. Tell me what you think, and that’s what I’ll do,” while others prefer to have the risks and benefits of the different treatment options explained to them, providing the information that allows them to have more input on the route they ultimately take, Kimball said. No choice is necessarily better, she said, but patients need to make their choices clear to their physician so that the doctor can take a complementary approach to making recommendations.
“There is no cookbook on the best way to manage all your patients,” Kimball said.
Kimball, who has been Fine’s doctor for the last 10 years, always explains to him how different medications work and spells out all potential side effects. Fine, who has had severe psoriasis since his early 20s and has tried several biologics, said it’s important for him to understand the side effects, because if they exist, he is likely to experience them.
Patience is also important, as it’s unlikely that one 15-minute appointment is enough to determine the best treatment plan.
“The expectation is that we’re in this together for a while,” Kimball said.
Oftentimes, she said, finding the right treatment takes a lot of trial and error. Fortunately, however, patients with psoriatic disease have lots of options.
“Not everything is going to work, but we can work together to come up with what you need and what’s best for you,” she said.
Fine believes luck played a role in landing him at Kimball’s office door. He had been seeing another group of dermatologists after moving to Boston from California. Then he experienced a flare when the dermatologist he had been seeing was out of the country, so he saw his doctor’s colleague. When his dermatologist returned, he didn’t agree with his colleague’s prescription, and they argued in front of Fine.
“I was a little freaked out by the situation,” Fine said.
When his dermatologist suggested he see Kimball because she was active in research and could offer him clinical trials, he was happy to change practices.
Fine also appreciates Kimball’s availability. Calling his plaque psoriasis a difficult case, Fine said he always seems to need the doctor most when she’s on vacation or attending a medical conference. But she always gets back to him in a timely manner, no matter where she is — whether she’s recently flown over the
Alps or she’s about to deliver a speech at a dermatology convention. When Fine wants to reach her, he emails her. Kimball has given him her direct email address (something she doesn’t do for everyone). Fine said he feels privileged that she’s comfortable with their communications arrangement.
A PA who pays close attention
Like Fine, Tami Seretti, 50, who was diagnosed with psoriasis in her late 20s and psoriatic arthritis in her early 40s, is thrilled with her provider. Seretti began seeing Jason Oberdick, a physician assistant specializing in dermatology, after her dermatologist retired about 10 years ago.
Seretti, who lives near Pittsburgh, is about to start her sixth biologic, after the previous five failed to deliver the desired results. Self-described as a difficult patient to treat, she hadn’t realized that, for 10 years, her dermatologist wasn’t paying close attention until she met Oberdick, of Forefront Dermatology in Pittsburgh.
“You don’t really know any better and think this is the best you can get,” Seretti said.
Seretti loves that Oberdick stays up on the latest treatments for psoriasis and psoriatic arthritis and has offered her biologics before others knew about their availability. Seretti has psoriasis in places such as her groin but is comfortable talking to Oberdick about it because, “I feel like I can say anything and that he understands what I’m talking about.” Her scalp psoriasis has resulted in her hair falling out, and she said Oberdick gets how important it is for her to keep her hair.
“He works with me on that,” Seretti said. “I really feel as though he has a vested interest in me.”
Oberdick said people like Seretti with severe disease are not average patients, and he’s happy to give them a little extra attention.
“Tami’s disease is a lot more complex than someone who has mild acne or a wart, and I have to take that extra time with her when I see her,” he said.
He’s practicing medicine in a time when it's possible to treat psoriasis more aggressively, given the array of treatment options, Oberdick said. This works to the advantage of someone like Seretti, who has a difficult case, he added.
“When I first got onto the scene in dermatology, there were all sorts of new medications coming out for psoriasis, and the old medications were falling out of favor,” he said.
Like Kimball, whenever he meets a new psoriasis patient, Oberdick said one of his first questions is, “How aggressive do you want to be with your treatment?” Some patients aren’t bothered by the itch and can live with topical treatments as needed. Others say their psoriasis is “so bad it prevents them from dating, they’re failing at their job, they’re so miserable and itch all the time.”
Oberdick said he treats the latter patients much more aggressively if that’s what they need. He believes that, in the end, it’s always the patient’s decision, but said he does nudge those whom he thinks should be treating their disease more aggressively if they’re not inclined to do so.
“One thing that psoriasis patients don’t understand is if they have severe disease on the outside, the inflammation associated with psoriasis is doing damage on the inside, to their heart, kidneys or brain,” he said. “We have a lot of evidence to show that if you treat psoriasis aggressively, it’s better for them in the long term.”
Tips for finding your perfect match
So how do you find a provider who is a good match for you? Lambert suggests approaching a new provider as if you are on a speed date.
“Think hard about what issues are critically important to you and what are the deal breakers,” he said. “Come prepared with questions that will get you those answers. Do you want a provider with whom you can share decisions about your care? Or do you want a provider who will make decisions for you? Do you want a provider who believes in complementary medicine, such as acupuncture or nutritional supplements? Or is that not important to you?”
Asking these questions can help you figure out whether you’re on the same page. If you’re not, don’t be afraid to say thanks, but no thanks, and look elsewhere for a provider with whom you are more in sync, he said.
Online communities also are a good source of treatment information, Lambert said.
“Connect online with other patients who have psoriasis and get their feedback about providers you’re considering,” he said.
For example, the NPF has an online community, Talk Psoriasis, where people impacted by psoriatic disease can connect and exchange information about treatments. NPF has another free resource, the Patient Navigation Center, that can help you find a provider in your area who understands how to treat psoriatic disease. Patient Navigators will also make sure that the provider is in your insurance network and is accepting new patients.
And when you do find a provider who is a good match, take the time to say thanks. In July, Kimball was seeing patients in the clinic when one of them stopped to ask her how she was doing.
“It was a refreshing moment of people getting out of their own world of problems and issues and remembering to help each other,” she said. “It was very nice. Patients shouldn’t feel intimidated about expressing their gratitude. It is really meaningful to physicians. It’s little acts of kindness that make a big difference.”
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