Published On: 3/31/2025

Addressing the Burden of Hidradenitis Suppurativa: The Often-Hidden Impact on Quality of Life 

Hidradenitis suppurativa (HS) is a debilitating skin condition that leads to not only physical discomfort, but also emotional and social difficulties that patients are challenged to navigate. The impact of odor, along with its disruptive symptoms and social stigma, continues to remain a concern for patients living with HS significantly affecting their quality of life. In this article, we'll explore the burden of HS with special attention on the impact of odor, itch, hair loss, pain, and sleeplessness. We will also explore the evolving understanding and implications of classifying HS as an autoimmune disorder, and the notable differences in treatment course patients with HS receive due to healthcare disparities. Enhancing the collective understanding of each of these factors and impact on patients suffering from this condition is essential to advancing the comprehensive knowledge of burden in this complex disease.  

The Challenge of Odor in Hidradenitis Suppurativa Management 

Living with HS often means dealing with an uncomfortable truth: the odor patients experience can be very psychologically burdensome. For the patient, this can reinforce feelings of embarrassment and isolation as they manage the challenging condition, ultimately highlighting the need for specialized, compassionate care for HS patients. 

TARGET-DERM HS is an ongoing longitudinal, observational study of patients with HS accumulating data from a consortium of real-world sites in the U.S. and Canada. A recent Target RWE study, titled Characterization of patient perception of odor severity in hidradenitis suppurativa using TARGET-DERM HS,¹ revealed that as severity of the disease worsened, patients experienced greater odor severity, as determined by question 8 (Odor Severity) on the Hidradenitis Suppurativa Severity Assessment (HSSA). Furthermore, after adjusting for covariates, the models confirmed that odor severity significantly affects quality of life (as measured by the Hidradenitis Suppurativa Quality of Life (HiSQoL), Dermatology Life Quality Index (DLQI), PROMIS Depression and PROMIS Anxiety measures). Presented at the American Academy of Dermatology (AAD) annual meeting in March 2025, the study underscores the need for dermatologists to address not only the visible symptoms of HS, but also other symptoms that may affect quality of life like the emotional and social consequences underlying this condition. Odor linked to HS can significantly impact a patient's mental health and their desire to participate in social activities, potentially cutting them off from vital support systems. 

Physicians and clinical researchers are gradually adopting a broader perspective on the impact of diseases by supplementing their clinical assessments with the patient perspective through the collection of patient-reported outcome measures (PROs). Utilizing PROs, patients with HS have consistently reported symptoms like relentless, itching (pruritus), insomnia, hair loss, and pain – which all impact daily functioning. This shift in perspective is crucial for developing new treatments and ultimately, providing better patient care. 

Despite advances in understanding, significant gaps remain in addressing the full spectrum of HS symptoms and their impact. Clinicians will better serve patients when they address these symptoms that substantially diminish patients’ quality of life. 

Healthcare Disparities in Hidradenitis Suppurativa  

Over the past decade, we've seen a change in how inflammatory skin conditions, including HS, are assessed. It's becoming increasingly clear these conditions aren't limited to only the skin. There has been a paradigm shift from focusing on objective skin findings and symptoms to instead, having a more comprehensive approach that analyzes the underlying immunologic factors that potentially contribute to the patient experience of HS.  

Another Target RWE study titled, Healthcare Disparities in Hidradenitis Suppurativa in the US: TARGET-DERM HS², utilized real-world data from the observational study to illuminate differences HS treatment in the US by race and ethnicity groups. The findings include: 

• Delayed Diagnosis and Treatment: Across racial ethnic groups, symptom onset occurred a mean of over 8 years after the first HS symptom. 
• Disease Severity: Non-Hispanic Black patients had higher severity at enrollment to TARGET-DERM HS, as shown by higher Hurley stages. 
• Other Health Issues: Non-Hispanic Black patients also dealt with a higher rate of several comorbidities of interest, including diabetes and obesity.  
• Different Treatments: Hispanic patients used fewer biologics, but more topical antiseptics; they also used isotretinoin and methotrexate more frequently than their NH-Black and NH-White counterparts.  

These findings, also presented at the AAD annual meeting, emphasize the urgent need to bridge healthcare gaps in HS management. Further, the U.S. Food and Drug Administration (FDA) has acknowledged the substantial burden of HS, recognizing its impact on various racial and ethnic minority populations³. Prioritizing early diagnosis, fair access to treatment, and holistic patient care is essential to improving outcomes for all impacted communities. 

Leveraging Data for Deeper Insights and Better Treatment 

At Target RWE, we're uniquely positioned to fill in these knowledge gaps in HS through our comprehensive dermatology data that combines in-depth clinical insights with interventional data collection, including PRO and ClinRO measures to generate a more accurate view of disease burden and progression. By utilizing real-world evidence (RWE), we develop data-driven strategies to understand and manage HS, tackling both visible and hidden features of the disease. 

Target RWE’s robust dermatology real-world data quantifies the extent of patient symptoms like odor, itch, sleeplessness, and pain in a way that can inform both clinical practice and policy changes. With more comprehensive data and a deeper understanding of the disease burden, researchers can drive better treatment options for HS patients and advocate for a more holistic management of inflammatory skin conditions. 

HS goes far beyond a simple skin issue and the associated smell, along with social and emotional effects of the disease, requires attention and action from the medical community. Acknowledging these hurdles, confronting unequal access to healthcare, and harnessing real-world evidence to support treatment advancements can enhance the care and well-being of HS patients globally. 

It’s important to work with a strong RWE team to deliver high-quality results. Visit our website or contact info@targetrwe.com today to learn more about Target RWE’s dermatology data!  

 

References

1 Tiffany Mayo, Jayesh Patel PhD, Bethanee J Schlosser MD, PhD, Beth Rycroft PhD, Amy E Gamelli PhD, Claire C Bristow PhD, MPH, MSc, Akash Danavar PharmD, MS, MPH, Benjamin H Kaffenberger MD, Michael Cecchini MD, Alexa Kimball MD, MPH on behalf of the TARGET-DERM HS Investigators. Characterization of patient perception of odor severity in hidradenitis suppurative using TARGET-DERM HS. AAD. Poster Presentation. March, 2025. 

2 Katie K Lovell BS, Max E Oscherwitz MBA, Steven R Feldman MD, PhD, Rita O Pichardo MD, Keith Knapp PhD, Julie M Crawford MD, Tiffany Mayo MD. Healthcare Disparities in Hidradenitis Suppurative in the US: TARGET-DERM HS. AAD. Poster Presentation. March 2025. 

3 https://www.fda.gov/consumers/health-education-resources/hidradenitis-suppurativa