CHICAGO – If you can’t set the temptation to hurry aside and take the time to listen, things may not go well, said Neil Prose, MD.
With the caveat that Janus kinase inhibitors show promise, Dr. Prose said that “most children who are destined to lose their hair will probably do so despite all of our best efforts.” Figuring out how to engage children and parents and frame a positive conversation about alopecia can present a real challenge, especially in the context of a busy practice, said Dr. Prose, professor of dermatology and medical director of Patterson Place Pediatric Dermatology at Duke University, Durham, N.C.
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“These are very culturally-specific suggestions, but see which ones work for you,” said Dr. Prose, speaking to an international audience at the World Congress of Pediatric Dermatology.
Dr. Prose depicted two opposing images. In one, he said, the patient and you are sitting on opposite sides of the table, with the prospect of hair loss looming between them. By contrast, “imagine what it would take to be on the same side of the table, looking at the problem together,” he said.
There are many barriers that stand in the way of getting you and the patient on the same side of the issue of dealing with severe alopecia areata. The high emotional content of the discussion can be big factor, not just for the patient and family members, but also for you.
“We are often dealing with patient disappointment and, frankly, with our own sense of personal failure” when there isn’t always a good set of options, said Dr. Prose. Other specific aspects of severe pediatric alopecia areata that make the conversation difficult include the high degree of uncertainty that any particular treatment will succeed and a knowledge of how to give patients and family members hope without raising expectations unrealistically.
Coming back to the important first steps of not rushing the visit and being sure to listen, Dr. Prose said that, for him, the process begins before he enters the room, when he takes a moment to clear his mind. “It starts for me just before I open the door to the examining room. As human beings, we are infinitely distractible. It’s very hard for us to simply pay attention.”
Yet, this is vitally important, he said, because families need to be heard. Citing the oft-quoted statistic that, on average, a physician interrupts a patient in the first 17 seconds of the office visit, Dr. Prose said, “Many of us are ‘explainaholics,’ ’’ spending precious visit time talking about what the physician thinks is important.
Still, it’s important to validate parents’ concerns and to alleviate guilt. “Patients’ families sometimes feel guilty because they are so upset and worried – and it’s not cancer,” said Dr. Prose. Potential impacts on quality of life are still huge, and all parents want the best for their children, he pointed out.
One way he likes to begin a follow-up visit is simply to ask, “So, how’s everyone doing?” This opens the door to allow the child and the family to talk about what’s important to them. These may be symptom-related, but social issues also may be what’s looming largest.
In order to decipher how hair loss is affecting a particular child, Dr. Prose said he likes to say, “I need to understand how this is affecting you, so we can decide together where to go from here.” This gives the family control in setting the agenda and begins the process of bringing you to the same side of the table.
Specific prompts that can help you understand how alopecia is affecting a child can include asking about how things are going at school, what the child’s friends know about his or her alopecia, whether there is mocking or bullying occurring, and how the patient, family, and teachers are addressing the global picture.
Parents can be asked whether they are noticing changes in behavior, and it’s a good idea to check in on how parents are coping as well, said Dr. Prose.
To ensure that families feel they’re being heard, and to make sure you are understanding correctly, it’s useful to mirror what’s been said, beginning with a phrase like, “So, what you’re saying is …” Putting a name to the emotions that emerge during the visit also can be useful, using phrases like, “I can imagine that this has been disappointing,” or “It feels like everyone is very worried.”
But, said Dr. Prose, don’t forget about opportunities to praise patients and their families when they’ve come through a tough time well. This validation is important, he said.
When treatment isn’t working, a first place to start is to acknowledge that you, along with the family, wish that things were turning out differently. Then, said Dr. Prose, it can be really important to reappraise treatment goals. After taking the emotional temperature of the room, it may be appropriate to ask, “Is it time to talk about not doing any more treatments?” This question can be put within the framework that hair may or may not regrow spontaneously anyway and that new treatments are emerging that may help in future.
When giving advice or talking about difficult issues, it can be helpful to ask permission, said Dr. Prose. He likes to begin with, “Would it be okay if I ...?” Then, he said, the door can be opened to give advice about school issues, to ask about difficult treatment decisions, or even to share tips learned from other families’ coping methods.
Don’t forget, said Dr. Prose, to refer patients to high-quality information and online support resources, such as the National Alopecia Areata Foundation. The Internet is full of inaccurate and scary information, and patients and families need help with this navigation, he said.
The very last question Dr. Prose asks during a visit is “What other questions do you have?” The question is always framed exactly like this, he said, because it assumes there will be more questions, and it gives families permission to ask more. Although most of the time there aren’t any further questions, Dr. Prose said, “Do not ask the question with your hand on the doorknob!”
Dr. Prose had no relevant financial disclosures.
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