Hidradenitis Suppurativa Survey Finds Dermatologists Can Improve Patients’ Confidence in Condition Management

Respondents who see a dermatologist are more likely to be diagnosed with severe form of condition, have been more active in trying out different treatments

Published May 14th, 2021 | 3 Minute Read

PHILADELPHIAMay 14, 2021A new survey from Health Union reveals that people living with hidradenitis suppurativa (HS) who see a dermatologist are more active in trying to find treatments that work and feel more comfortable with their treatment management. The inaugural Hidradenitis Suppurativa In America survey illuminates the perspectives and experiences of people living with HS.

These findings also support and fuel content and engagement for the recent launch of HSDisease.com, Health Union’s 30th condition-specific online health community.

HS, also known as acne inversa, is a non-contagious condition that causes deep and painful lumps under the skin, typically in the armpits or groin. These lumps are often mistaken for pimples or acne and can rupture, emitting a foul-smelling liquid. According to the American Academy of Dermatology, dermatologists are well-suited for identifying and treating the condition because they often receive the training needed to differentiate between HS and other skin issues.

Only 44% of Hidradenitis Suppurativa In America survey respondents currently see a dermatologist for their HS. Of this group, 43% have both a dermatologist and a primary care physician (PCP) as part of their care team. Of respondents who don’t currently see a dermatologist, half aren’t seeing any healthcare professionals (HCP) for their HS, while 43% are seeing a PCP; other HCPs include rheumatologists and holistic medicine specialists.

HSDisease.com patient advocate Jasmine Espy said that she credits finding a dermatologist who specializes in treating HS – in conjunction with her own efforts to improve her diet and overall health – with helping her better manage her condition. Since first seeing her dermatologist, she said the severity of her condition has decreased from Hurley Stage III (severe) to between Stage I (mild) and Stage II (moderate).

“That is what can happen when patients have access to the treatment, resources and expertise they need,” Espy said. “I can’t imagine what my life would look like if I hadn’t received treatment. Finding dermatologists and clinics specializing in HS is pivotal to proper treatment because they know the specifics and intricacies of the disease.”

The survey findings reveal that respondents who currently see a dermatologist have been more active in trying out different treatments. For example, these respondents are more likely than those who don’t currently see a dermatologist to have ever tried topical antibiotics or steroid injections.

Respondents who currently see a dermatologist for their HS were more likely than those who don’t to feel confident they’re doing all things necessary to manage their HS on a regular basis, as well as feel they are doing a good job following their treatment plan. Looking only at respondents who currently see an HCP, those who see a dermatologist were also more likely than those who only see non-dermatologist HCPs to say they rely on their doctors’ recommendations regarding treatment and medications.

Although every individual experience with HS is different, there are a few reasons that could contribute to not seeing a dermatologist. One key reason could be differences in severity. For example, respondents currently seeing a dermatologist were more likely to currently be diagnosed with a severe stage of HS, as well as to say the pain caused by their HS directly impacts their quality of life.

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Other reasons include health insurance concerns and lack of access to a local dermatologist who specializes in HS. For example, respondents currently seeing a dermatologist were more likely to need to travel a far distance to see their HCP. Meanwhile, those who don’t currently see a dermatologist were more likely to have lost health insurance since being diagnosed with HS.

“People living with conditions, such as hidradenitis suppurativa, that are lesser known and have misunderstood symptoms face considerable hardships when seeking diagnosis, treatment and HCPs that fit their needs,” said Olivier Chateau, co-founder and CEO of Health Union. “Online health communities, like HSDisease.com, can go a long way toward providing the information, connection and validation they need to make the condition-related choices that work best for them.”

The Hidradenitis Suppurativa In America survey, which fielded from Sept. 14 to Nov. 23, 2020, included responses from 406 people living with hidradenitis suppurativa. Additional survey results may be available upon request.

More information about living with hidradenitis suppurativa can be found on HSDisease.com.

About Health Union

Since 2010, Health Union has encouraged social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. The company creates condition-specific online communities – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Today, the Health Union family of brands includes 32 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Migraine.com.

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