Wishing you had a chance to ask more questions or voice a few worries at your last doc appointment? If you have psoriasis (PsO), the answer is probably yes. Because for all the hours you spend managing and worrying over your condition, you most likely get mere minutes to share those concerns with your dermatologist.
“This is certainly a frustration for our patients, and we totally understand,” says Joel Gelfand, M.D., director of the Psoriasis and Phototherapy Treatment Center at Penn Medicine in Philadelphia. “Often, doctors don’t have the time patients deserve. So efficiency becomes important.”
Dermatology visits are notoriously brief, lasting sometimes for as little as five to 10 minutes. And if you don’t know how to efficiently and effectively advocate for yourself—in a way so that your dermatologist truly hears you—you may end up among the 52% of psoriasis patients who say they’re dissatisfied with their treatment.
Here are some simple tips to help you feel heard, understood, and empowered to pursue the right PsO treatments.
Before Your Visit: Do the 3-Step Prep
A smooth doctor’s visit starts before you even step foot into the clinician’s office. “Number one for the patient: Be prepared,” says Brett King, M.D., associate professor of dermatology at Yale School of Medicine in Middlebury, CT. Start by asking for a dermatologist instead of a mid-level nurse practitioner or physician assistant, especially if it's your first visit. (One recent study reports doc swaps happen in more than 20% of all PsO patient appointments.) Same goes if your diagnosis is uncertain, or you’re not responding well to treatment, Dr. Gelfand adds.
Once your upcoming visit is on the books, get ready for it with these three steps:
Step 1. Do just enough research online.
Stick to reputable websites, says Dr. King, who recommends the National Psoriasis Foundation (NPF) as an online resource. Do your best to avoid overwhelming yourself with too much information. Just search until you feel you have a basic understanding of your condition and the possible treatment options, says Dr. Gelfand. “If you’re beyond 15 to 30 minutes, you’ve spent too much time.”
Step 2. Make a list.
Dr. King says to write down notes to refer back to during your upcoming appointment using three separate categories:
When thinking on your expectations for the visit, consider the following questions:
- How important is it for you to clear up your skin?
- Do you expect to get a treatment plan from your doc, or just information?
- What specific info do you expect to get from your derm?
Think of your expectations list as your general guide for the visit—a plan for getting the most out of patient-doctor face time.
Once you’ve got a handle of what, exactly, you want from the appointment—from clearer skin to, say, concerns about side effects from a new treatment—it’s time to jot down your specific questions. Ask yourself: What do I really want to know? But try to keep this list short—three questions, max. (You may only get 5 to 10 minutes with your derm, remember?)
For example, is the disease disrupting your work or your ability to sleep? Is skin discoloration an issue? Is it interfering with intimacy with your partner? Are you afraid to wear shorts or short sleeves in public?
Your questions on these topics—or any others—will help inform the kind of treatment your dermatologist recommends. “These are important to your clinician,” says Dr. Gelfand. “The more the disease bothers you, the more important it is for us to manage it. In 2020, there’s no reason for someone to suffer with psoriasis.”
As for your top concerns, you might consider:
- Are there certain comorbidities you’re especially worried about—arthritis, diabetes, heart disease, or mental health issues—either because you’ve been experiencing symptoms, or you have a family history of them?
- Are particular treatments off the table for you (maybe you’re terrified of injections, for example)?
- Do specific side effects (cancer risk, sexual dysfunction) give you pause?
- What about clinical trials? Could you be a good candidate to join one?
If you are interested in joining a trial, be ready for the doctor to ask you why, says Scott Worswick, M.D., clinical associate professor of dermatology at the Keck Hospital of USC in Los Angeles. Is it because all the therapies you’ve tried aren’t working? Or do you want to give back to science? Your answers can help your doctor advise you.
Step 3: Write down all treatments you’ve tried before.
If you’ve been prescribed medications in the past, write them down as part of your pre-visit prep. Be sure to include how you used them and whether or not they were effective. This can help your dermatologist eliminate what hasn’t worked, and zero in on a potentially more effective solution, says Dr. King. For example, if you used one treatment twice a day for two weeks and it worked for a time, but the rash came back later, your derm might suggest you try it again, just with a different maintenance routine—perhaps three times a week going forward, he explains.
During Your Visit: Stay Focused
You’ve done your prep work (good job!), and now it’s time for your appointment. Don’t forget to bring a paper and pen with you to take notes. “You can learn a lot in a dermatology visit,” says Dr. Worswick, “and if you’re like most people, it’s hard to remember everything.”
Then, your mission is simple: Avoid time-wasters and stay focused. Here’s how:
Get off to a strong start.
When the derm walks into the exam room and asks, “What are you here for?” that’s your cue. Share your expectations and main questions, mention your concerns, and hand over the list of treatments you’ve tried before (if you have one). You’ll immediately shape the visit around your priorities, says Dr. King.
Your doc may arrive with his or her own agenda—so it’s up to you to change it. “My assumption as a clinician is you want your skin to be clear,” says Dr. King. “But if you don't care about clear, and you just read somewhere that there’s cardiovascular disease risk and you want to know how that affects you, then that needs to be communicated, and early.”
Avoid irrelevant details—and be sure you’re listening, too.
Give as much information as you need to—and no more. “I’ve had psoriasis patients come in and tell me all the symptoms they’ve had in their whole life,” says Dr. Worswick. “Then it’s like, well, we have five minutes left, and we haven’t gotten to the psoriasis yet.”
Stick to your major questions and concerns—and do your best not to go off on tangents. If, say, your derm has already explained how there’s no particular diet proven to help psoriasis, don’t come back five minutes later with, “Well, what about gluten-free?” says Dr. King. If there’s a specific thing that’s unclear to you, ask for clarification. But don’t make the doctor feel like you’re not listening. Repeating information just wastes time.
Be 100% honest.
While your dermatologist determines the severity of your psoriasis, it’s important for you to offer an honest assessment as well. “I tell my patients my opinion doesn’t matter,” says Dr. Gelfand. “What matters is whether you think it’s mild, moderate, or severe.”
PsO can affect patients in dramatically different ways, and dermatologists can’t always tell that just by looking. Patients with rashes all over their body may not be bothered by them, while others with milder-looking disease may suffer with extreme itch or self-consciousness. If you don’t clearly communicate how much the condition is affecting you, your doctor may believe it’s not as bad as it really is—which can put you on the path to the wrong treatment. Perhaps that’s why in one survey, 36% of PsO patients identified itch as their biggest challenge, while only 12% of dermatologists said the same.
So be open with your dermatologist, says Dr. Gelfand. If you minimize your concerns or hold back your emotions, you’re not giving your doc the information needed to recommend proper treatment. “This should be a place where you’re understood, and your experiences are validated or attended to. It’s common for patients to become emotional or cry. That’s fully acceptable. That’s what we’re here for as clinicians—to listen and understand what you’re going through,” he says.
And, if you have a tendency to downplay your concerns, resist that urge. If necessary, bring a friend or family member who can help keep you honest, suggests Dr. King.
Explain your symptoms using a scale.
One way to quickly and clearly convey the impact of your condition: Rate your symptoms on a simple zero-to-10 scale. “It’s one thing to say, ‘I’m itchy,’” says Dr. King. “It’s another thing to say, ‘On a scale of 1-to-10, my itch is a 15.’ In an instant I know it’s bad.”
Dr. Gelfand agrees. He recommends using a zero-to-10 scale to rate two things: (1) your physical symptoms including flaking, itching, cracking, burning, and pain, and (2) the emotional impact of the disease (anxiety, depression, and social isolation).
Once you’ve set the tone, allow the doctor to lead.
Eventually, the dermatologist will want to ask you a targeted series of questions. Once the questioning starts, you’ll want to let him or her direct the discussion. “As clinicians we have an algorithm in our mind of all the things we need to ask to get a diagnosis and recommend a treatment,” Dr. Gelfand says. “If we’re being pulled in different directions, that makes it more challenging to get the information we need to help you the best we can.”
Don’t be afraid to ask about treatments.
If your derm recommends a new treatment plan, don’t expect to be told everything you need to know. Be prepared to ask some more questions, including:
- How well will this work?
- How long do I need to use it?
- What side effects should I be aware of?
It’s important your expectations of any treatment align with your doctor’s. If they don’t, then maybe it isn’t the right treatment (or doctor) for you. Also, even if your doctor shares with you the major side effects, the full list is likely to be much longer. It’s always smart to do your own research. When you pick up your prescription, ask the pharmacist for patient prescribing information. This will include common and serious side effects.
Never worry about hurting your doc’s feelings.
If you’re seeing a dermatologist who doesn’t specialize in psoriasis, don’t be afraid to ask whether they’re comfortable treating it—or if you should see a psoriasis expert, Dr. Gelfand says. (To double check on the DL, check out this NPF directory.) “Any good clinician should not be offended by such a question, and in fact should be reassured by it. A patient who wants to make sure they have all the options is a patient who’s motivated to get better,” he says.
Seeing a psoriasis expert could open up more treatment options for you, adds Dr. Gelfand. For example, the center where he works offers phototherapy treatment, which may not be available at other dermatology practices.
After Your Visit: Evaluate It
If you’ve followed these steps, you should leave an appointment feeling like your major concerns were addressed. Still, if a question comes up after the fact, call the dermatologist’s office, or send a message through your online patient portal (if there is one). If you find you have to keep asking additional questions, it’s probably best to book another appointment, says Dr. Gelfand.
Finally, take a moment to think about your visit. Ask yourself whether you have confidence in the clinician taking care of you. Did the person express concern and involve you in decision making? Were all your questions answered? If you were on a treatment that wasn’t working, was the doc able to explain why and then recommend something different?
“If those things aren’t happening, you may have to ask to be referred to another person,” Dr. Gelfand says. After all, no one has time—those with PsO, in particular—for a doc who doesn’t hear you or fully respond to your needs.