Study Shows High Level of Gaps in Care Needs Among Those With HS


Interviewing both patients and providers, researchers found that while having effective treatments for hidradenitis suppurativa (HS) took precedence across the board, some priorities varied among the 2 groups.

Current treatments for managing hidradenitis suppurativa (HS) still leave those affected by the condition with significant unmet needs, revealed a new study, which found gaps in various treatment goals, including optimal effectiveness and pain management.

Interviewing both patients and health care providers (HCPs), the researchers of the study found that while having effective treatments took precedence across the board, some priorities varied among the 2 groups. The study, published in The Patient – Patient-Centered Outcomes Research, is offering novel insights, as data on patient and provider perspectives has remained scant, the researchers noted.

Throughout the study, the group interviewed 12 patients and 16 providers. Quality of life (QoL) was heavily cited by patients, with all respondents voicing the importance of QoL attributes, including improvements in work productivity, mental health, social life, and fatigue.

“Unsurprisingly, given the high unmet care needs caused by the limited number of effective treatments available, patients and HCPs prioritized improvements in effectiveness and QoL over safety or convenience as treatment attributes,” the authors wrote, adding, “There were little to no controversies in the respondents’ statements with the exception of some HCPs seeing the greatest need to more successfully prevent disease progression at early stages with more effective treatments, while others emphasized the need to have more effective treatment options for patients with more severe HS who had already exhausted the limited treatment options available.”

The interviews highlighted 16 unmet care themes classified as either treatment outcome–related or care process–related.

While patients cited more desire for treatments that could improve their pain, improve the appearance of their skin, and help them avoid surgery, HCPs were more likely to want treatments that elicit immunological control and prevent disease progression. Ten of the patients emphasized the poor effectiveness of available interventions compared with 14 HCPs. HCPs did not prioritize improvements in visual appearance or odor, avoidance of surgery, or mental health.

Both groups identified the inadequate pain management of treatment as an important unmet care need.

Outside of treatment, respondents also expressed concerns with the health care process, citing delays in diagnosis stemming from unsuccessful referrals and misdiagnoses attributed to low disease awareness. HCPs detailed fragmentation within care delivery even after patients get a correct diagnosis, and patients highlighted cost concerns for wound dressings and skin care products due to insufficient reimbursement practices.

On a 7-point Likert scale, patients scored the level of perceived unmet care needs as a 4.5 and HCPs scored it a 5.5. In addition, 11 HCPs confirmed that as disease severity increased, patients experienced greater unmet care needs.

The researchers did caution that due to their small sample size, there are limitations in the generalizability of their findings. They also noted that due to recruiting participants from multiple countries, the findings were not able to provide insight into the flaws of one particular health care system.

“The inability of currently available therapies to show satisfying levels of effectiveness to improve QoL and reduce HS pain was revealed to drive the treatment outcome-related unmet care needs,” the authors wrote. “This is also confirmed by the high number of respondents in both groups reporting experience with ‘off-label’ treatments to manage HS.”


Willems D, Hiligsmann M, Zee H, Sayed C, Evers S. Identifying unmet care needs and important treatment attributes in the management of hidradenitis suppurativa: A qualitative interview study. Patient. 2022;15(2):207-218.

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