With the recent U.S. Food and Drug Administration approval of secukinumab (Cosentyx, Novartis) and a full pipeline, hidradenitis suppurativa (HS) is having a moment.
Up until now, the TNF blocker adalimumab was the only approved treatment for moderate to severe HS in people 12 years and older.
Now that there are more HS treatment options, Nicole Salame, MD, and colleagues set out to better understand the factors affecting treatment selection among HS patients so they can better empower patients to make informed treatment decisions. The new findings appear in JAMA Dermatology.
Dr. Salame, a Laser and Cosmetic Dermatologic Surgery Fellow at SkinCare Physicians in Chestnut Hill, Mass., chatted with TDD about the findings and their implications for HS patients and the physicians who treat them.
TDD: What factors affect the medical decision-making process for HS patients?
Dr. Salame: “We interviewed 21 adults with hidradenitis suppurativa (HS) recruited from an HS specialty clinic in Atlanta, Georgia, and found five major factors that influence their medical decision-making.
Disease understanding.
To make informed treatment decisions, participants desired to learn more about their HS, such as expected pathogenesis, expected progression, and treatment options. For example, learning of the chronicity of HS encouraged one participant to try a biologic therapy.
Participant’s perceptions of treatment risk.
This factor influenced whether they were willing to try new treatments. For example, concerns for infection, lymphoma, or immunosuppression drove some to forgo biologic treatments as options, even in the setting of severe HS.
Individual treatment fatigue.
This factor impacted medical decisions. Participants were often discouraged by treatment failures and time necessary for onset of treatment effect, which drove reluctance to try other treatments.
Sources of information.
Whether from dermatologists, the internet, advertisements, or loved ones, influenced participants in their medical decisions. Many relied on their dermatologists as a primary source of information, while others turned to advertisements or internet forums.
Suffering threshold.
This is defined as hesitance to select treatments perceived as risky until HS pain became unbearable. Perceived risks led some to consider biologic therapy as a last option only to be tried once HS symptoms became intolerable. “
TDD: How can these barriers be better addressed?
Dr. Salame: “Dermatologists play a major role in assisting patients to overcome barriers and guide informed medical-decision making. They can set the stage by assessing patients’ disease understanding and perceptions of treatment risks. This provides the opportunity for dermatologists to mitigate misconceptions, educate patients on the progressive nature and chronicity of HS, and establish realistic expectations.
To combat treatment fatigue, dermatologists can offer faster-acting treatments for temporary symptomatic relief as a bridge to maintenance therapy. Patients should be aware of the role that bridging therapies, maintenance treatments, and surgery can provide. Providers should explain that the goal of maintenance treatments is to reduce flares and prevent new HS lesions, not cure HS. Surgery may then play a role once HS is controlled or if there are painful tunnels refractory to treatment.
To address the suffering threshold, dermatologists can educate patients about the “window of opportunity” with biologic therapies to encourage early trial. Recent studies favor early treatment of HS with biologic therapy, even in Hurley Stage I or II HS, to reduce the risk of irreversible tunnel formation and scarring.
As an invaluable source of information, dermatologists should aim to provide patients with the highest quality resources for information on their condition and treatment options. When applicable, dermatologists can guide patients to reliable online resources, such as the hsfoundation.org.”
TDD: Any advice for dermatologists who haven’t seen so many HS patients?
Dr. Salame: “Being proficient in identifying HS is critical as early diagnosis and treatment are key to preventing scarring and disease progression. Once diagnosed, dermatologists should strongly consider a multidisciplinary, holistic approach, addressing the psychological, gynecological, metabolic, and other comorbidities associated with HS. Extending personalized empathetic care to patients is equally important. Connecting patients to support groups can have a huge impact by providing a sense of community and another vital source of information.
Dermatologists who do not have extensive experience treating HS may also consider referring patients to HS specialists. The website, hsfoundation.org, has an extensive list of HS specialty clinics throughout the country and other helpful resources for the dermatologist and patient, alike.“