HS Uncovered – The Impact of Living with Hidradenitis Suppurativa Survey

The results from the ‘HS Uncovered’ global burden of disease survey have been published in the JEADV Clinical Practice journal.

🌍 What Was the Study About?

This international study, conducted by a team comprising industry professionals, a patient representative (Barry from hS Ireland), and physicians asked people living with HS about how the disease affects their lives in areas such as their daily life, mental health, work, finances, and experience with the healthcare system. The study also measured how involved and confident people feel in managing their condition.

👥 Who Participated?

• 656 adults with HS from six countries (France, Germany, Italy, Spain, UK, and US)
• Approx. 77% (505) of people who participated had been diagnosed with HS by a doctor; the remaining 151 had suspected HS.
• Most people (65%) who responded were women and aged 26–45 years

 

📊 Key Findings

🧠 Mental and Emotional Impact

• Most (53%) had anxiety, and just under one-third (29%) had depression
• Most people reported a very large or extremely large impact on their quality of life
• These effects were consistent across gender and ethnic backgrounds

💼 Work and Productivity

• 85% of employed people indicated some level of work impairment:
  • 52% reported overall reduced productivity
  • 19% missed workdays (absenteeism)
  • 44% felt less effective while working (presenteeism)
• People with HS missed an average of 8 hours of work per wee

 💶Financial and Family Life

• Average monthly out-of-pocket costs associated with HS were €214
• Costs were highest in the US (€591*) and lowest in Germany (€74)
• Over half of women indicated HS affected their family planning
  • Main concerns: disease control, impact on pregnancy, ability to care for a child
• *2023 conversion rates

⏳ Delayed Diagnosis

• On average, people waited:
  • 1.9 years to seek medical help after symptoms started
  • 4.0 more years before getting a diagnosis
• Most saw 7 different healthcare professionals before diagnosis
• Only 39% were satisfied with the time it took to be diagnosed

💊 Treatment Dissatisfaction

• 52% were unhappy with their current treatment
• Common issues:
  • Symptoms weren’t controlled
  • Medications stopped working
• Pain relief was the top desired treatment benefit, followed by:
  • Abscess reduction
  • Improvement in quality of life
  • Symptom relief (itching/discomfort)

 

💡 What Does This Study Tell Us?

Even though most people with HS are motivated and engaged in managing their condition, they still experience:

• Delays in care
• Mental health challenges
• Work disruption
• Financial burden
• Dissatisfaction with available treatments

 

📌 Main Message:

People living with HS face major physical, emotional, and practical burdens in their lives. Despite being active in their care, many people struggle due to diagnostic delays and limited treatment options. Better disease awareness, faster diagnosis, and more effective long-term treatments are urgently needed.

The #openaccess publication is here.

Citation: Kokolakis, G., Vilarrasa, E., Garg, A., Alarcon, I., Go, M., Newbold, G., Mamareli, A., Richardson, C., McGrath, B.M. and Guillem, P. (2025), Patient Perspectives on the Impact of Living With Hidradenitis Suppurativa: Results From the Global ‘HS Uncovered’ Burden of Disease Survey. JEADV Clinical Practice. https://doi.org/10.1002/jvc2.70071

Note from Barry (HS Ireland): Many thanks to all the people with HS who took the time to complete the survey. Without their input, none of this could have happened. Thanks also to all involved in driving this project. It was a pleasure working with such a committed and dedicated group of people who made up the project’s steering committee.