Addressing patient concerns with biologic treatment in hidradenitis suppurativa
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Key takeaways:
- Five factors were identified as reasons why patients avoid treatment with adalimumab and other biologics.
- Patients ultimately trust their dermatologists to recommend proper treatment plans.
Patients with hidradenitis suppurativa are hesitant to use adalimumab — which is recommended as a first-line treatment for the skin condition — as well as other biologics, according to a study.
“[Tumor necrosis factor-alpha] and [interleukin-17A] inhibitors have been FDA approved for the treatment of HS,” Nicole Salame, MD, FAAD, laser and cosmetic dermatologic surgery fellow at SkinCare Physicians, told Healio. “Yet, despite HS’s morbidity and available evidence-based treatments, prescription rates for biologic treatments are low, suggesting that we are undertreating HS and risking disease progression.”
According to Salame, there has been increasing support in literature for the early initiation of biologics for the treatment of HS. This is called the “window of opportunity” and is a crucial time for treatment to avoid irreversible tunnels and scarring, Salame said. Nevertheless, patients tend to steer clear of biologics.
To learn more about what factors affect the medical decision-making process concerning biologics for patients with HS, Salame and her colleagues conducted an interview-based study comprised of 21 adult patients with HS.
Each patient had reported an average 7-day pain score of 1 or higher based on a 10-point scale prior to the interview. Also, 96% of patients had Hurley stage II or III disease and 71% had a history of being treated with adalimumab.
Five factors were identified as reasons for these patients to avoid biologic treatment: suffering threshold, perceptions of treatment risk, treatment fatigue, disease understanding and sources of information.
Suffering threshold
Patients expressed that disease severity and pain play a large role in their decision-making, with patients reporting that they were willing to escalate from topical to oral to biologic therapies as their condition worsened.
“I don’t really like taking medicine, so I tried not to do that. I just try to suck it up and deal with it for most days until it gets too bad where I can’t deal with it anymore,” one patient in the study said.
Most patients expressed that they considered topical agents to be the least risky and preferred to start with those before progressing to an oral or biologic therapy. Some even stated that they only tried adalimumab after they reached a pain threshold they could no longer endure.
As a suggestion to clinicians, the authors recommend that they educate their patients about the window of opportunity for adequate therapy to reduce long-term suffering.
Perceptions of treatment risk
Participants expressed that the potential benefits of a medication need to outweigh the risks. Many patients were worried about major adverse events, specifically lymphoma and infection, especially if they had children.
“I try to think about my children,” one patient said. “If the risks are too risky for me to take the medicine and still be a full-time mom and be able to be in my right mind, basically, when we’re talking about pain medication.”
“The risk of cancer is my red flag,” another patient expressed. “I have [two] kids ... I don’t want to take that risk. But I also don’t want to be stuck with my arms like this ... so, I would be on the fence about [trying adalimumab].”
Educating patients and mitigating misconceptions may help those that are good candidates for biologics take the next step.
Treatment fatigue
The process of waiting for a biologic to start working, reevaluating treatment effectiveness and constantly weighing the risks vs. the benefits was another reason that participants avoided biologics.
Many participants expressed that the time to or the lack of effectiveness breeds frustrations concerning treatment as well as feelings of hopelessness and a dwindling will to continue trying.
“I hear a lot of specialists saying, well, you know, we’re going to try this and do this and do that. And for the past [2 to 3] years, nothing really works, so it’s more frustrating than anything,” a patient said in the study.
To help patients avoid treatment fatigue, clinicians should set realistic expectations about time to response and the role of medications vs. surgery, according to the authors.
Disease understanding
Many patients explained that they do not understand the nature of their disease. In fact, one patient underwent surgical excision and laser hair removal with the expectation that this cured her HS, not realizing that it is a recurring condition.
They also explained that they do not understand how adalimumab works either, making them cautious to try it.
When asked what suggestions they may have for clinicians, the interviewees stated that they wish their dermatologist would discuss not only the treatment options but also the diagnosis and pathogenesis of HS.
Sources of information
Patients reported that they received treatment information from dermatologists, the internet, advertisements and loved ones.
Overall, participants trusted their dermatologists despite years of past doctors misdiagnosing their condition; however, while some fully trusted their dermatologists, others would feel the need to consistently research their recommended treatments.
“I will take my cues from the clinician first, ask as many questions as I can to have them educate me,” one patient explained. “And if there’s anything I’m unclear about or feel I need additional information with, I probably will do Dr. Google. But I know you have to do that sparingly ... You get yourself in trouble with that.”
According to the authors, the study showed that dermatologists who provided empathetic, personalized care and anticipatory guidance regarding therapies tended to build more trust with patients.
“HS patients want to be asked about their HS, and they want to be heard,” Salame explained. “Treating each patient as an individual with unique perspectives and challenges will equip dermatologists to provide personalized, empathetic care. Simply asking patients about their HS pain and making time to listening compassionately can be impactful and build trust.”
Some patients that referred to the internet often expressed that they felt their dermatologist was not disclosing all adverse effects before prescribing medication, which bred hesitation toward treatment. The authors found that using visual aids to explain treatment risks often helped patients understand these therapies better.
Lastly, patients were swayed by the opinions of their loved ones with one patient retrying adalimumab despite her previous diminished treatment response after being convinced by her parents.
What can practitioners do to help?
While many participants turned to other sources of information for treatment advice and expressed varied reasons for biologic therapy hesitation, they still ultimately trusted their dermatologists to make the right call. Therefore, dermatologists should make an effort to understand where their patient is coming from before prescribing medications.
“Dermatologists are encouraged to identify the factors that drive their patient’s decision, recognize knowledge gaps and opportunities for patient education, mitigate misconceptions and set realistic expectations for treatments while providing hope for promising therapies coming down the pipeline,” Salame said. “Dermatologists are the experts in HS disease management and must serve as a vital source of importance and support for patients.”
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