A recent study published in Journal of the European Academy of Dermatology and Venereology found that patients with hidradenitis suppurativa (HS) had a high disease burden and poorer quality of life despite treatment by a dermatologist.

The study included data from the Adelphi HS Disease Specific Program, which had data from the United States, France, Germany, Italy, Spain and the United Kingdom. All data was collected from November 2020 to April 2021.

All dermatologists actively caring for HS patients, patients 18 years and older, and adolescents 10-17 years old were included in this study.

Each dermatologist completed a patient record form (PRF) for the 5-7 patients with HS attending their practice. All patients 12 years and older were asked to self-complete a voluntary questionnaire (PSC) about their condition. A caregiver of the patient could complete a Caregiver Self-Complete (CSC) form on behalf of the patient. A single questionnaire was used for each patient. Severity of disease was judged by a physician, but no clinical definition was applied.

Data were collected from 312 dermatologists representing 1787 patients with HS. Overall, the PSC and CSC questionnaires were collected from 33.1% of patients. No responses were received from the UK, and only 5.2% and 8.3% were collected from Italy and France respectively.

The mean (SD) age of the overall population was 34.4 (12.2) years and 57.6% were female. Judgment of disease severity at the time of sampling was classified as mild in 66.0% of patients, moderate in 29.3%, and severe in 4.7%. The proportion of patients with mild, moderate and severe disease who completed PSC/CSC was similar to that of the general population.

Patients with mild HS at diagnosis reported moderate (17.0%) or severe (2.3%) disease at sampling, using severity classifications both retrospectively at first diagnosis of HS and at the time of sampling. Patients with moderate disease remained (31.4%) or progressed to severe disease (2.8%) at the time of collection. Patients with a diagnosis of severe disease had moderate (39.9%) or severe (13.2%) disease at the time of sampling. The average time between diagnosis and collection was 88.7 months.

About half of dermatologists (48.5%) and 62.2% of patients/caregivers reported improvement in their condition over the past 12 months. A large proportion of patients with moderate and severe disease reported disease deterioration or instability.

Patients who were diagnosed with HS when disease severity was mild had less frequent clinical signs of HS at the time of sampling, and 48.2% of mild patients reported the presence of 2 or more inflammatory nodules at the time of diagnosis against 10.7% at the time of sampling.

Patients with HS reported an impact on their quality of life, with an average Dermatologic Quality of Life Index score of 5.9 (5.4) and an average Hidradenitis Quality of Life score suppurative 11.0 (10.6). Only 36.1% of patients with mild HS had no impact of the disease on quality of life; 37.3% and 66.7% of patients with moderate and severe disease, respectively, had a very to extremely large effect on their quality of life.

Personal appearance, self-confidence, mood, close personal relationships, and feelings about the future were the areas in which quality of life was most affected, with the greatest impact seen in patients with moderate and severe disease.

This study had some limitations, including the fact that it used subjective physician-judged severity ratings. Additionally, there were no patient-reported data for the UK and little from Italy and France, meaning the data was skewed for the German, American and Spanish populations. Recall bias also has the potential to affect physician responses, and the survey took place during the COVID-19 pandemic and much of the consultations took place virtually.

“The high inflammatory burden, significant impact on patients’ lives, and progressive nature of the disease suggest that greater disease awareness, shorter time to first diagnosis, and availability of better treatment options to control symptoms are highly desirable goals,” the researchers wrote.


Ingram JR, Bettoli V, Espy JI, et al. Unmet clinical needs and disease burden in hidradenitis suppurativa: real-world experience from the EU5 and the United States. J Eur Acad Dermatol Venereol. Published online April 21, 2022. doi:10.1111/jdv.18163