General Dermatology

Helping Clinicians Understand Patient Experiences With Hidradenitis Suppurativa

Avatar photoBrandon May
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HS is a chronic disease. One study reported an average disease duration of 19 years in 90% of the cohort.3 The estimated prevalence of HS varies from 0.05% to 4.1% because of the challenges of collecting data and the large number of undiagnosed cases.4,5 HS is a disease of young adults, generally appearing after puberty in the second and third decades, with a decreasing prevalence in older adults. The average age of onset is 23 years, and in young men, the disease can continue into old age.3 HS is rare in children, and when it does occur in childhood, it is often the result of widespread disease in a family with a history of HS. This occurs in an estimated 34% to 40% of cases 3 Women are disproportionately affected at 3 times the rate of men, and tend to have a milder disease course. African American and biracial ethnicity are also associated with higher prevalence.. 6 Although direct correlations have not been proven, cigarette smoking, obesity, and a range of comorbid conditions are often present in patients with HS.7

HS is a chronic disease. One study reported an average disease duration of 19 years in 90% of the cohort.3


The estimated prevalence of HS varies from 0.05% to 4.1% because of the challenges of collecting data and the large number of undiagnosed cases.4,5 HS is a disease of young adults, generally appearing after puberty in the second and third decades, with a decreasing prevalence in older adults. The average age of onset is 23 years, and in young men, the disease can continue into old age.3 HS is rare in children, and when it does occur in childhood, it is often the result of widespread disease in a family with a history of HS. This occurs in an estimated 34% to 40% of cases 3

Women are disproportionately affected at 3 times the rate of men, and tend to have a milder disease course. African American and biracial ethnicity are also associated with higher prevalence.. 6 Although direct correlations have not been proven, cigarette smoking, obesity, and a range of comorbid conditions are often present in patients with HS.7

The degree of mutual correlation between patients with hidradenitis suppurativa and physician-based outcome measures was examined in a retrograde cohort register study.

In addition to physical examination, clinicians should consider asking their patients with hidradenitis suppurativa (HS) to estimate their number of painful lesions during the past 4 weeks in an effort to better understand patient-perceived experiences associated with this disease, study data published in the Journal of the European Academy of Dermatology and Venereology suggests.

In this retrograde cohort register study, Danish researchers investigated the relationship of patient- and physician-based HS outcome measures, including patients’ self-assessed number of painful nodules/boils and assessment of the number of lesions found during clinical examination. A total of 342 patients (mean age, 40 years) in the Scandinavian clinical quality HS database – the Register for HS (HiSReg) – were included in the study. The HiSReg database was previously created to test the efficacy and safety of different HS therapies.

The median age of HS onset in this cohort was 18 years, whereas the median age at diagnosis was 28 years. Patients reported a mean number of 4.2 painful boils experienced during the last 4 weeks (PB4W), which represented 89% of the actual mean number of lesions found during physical examination (n=4.7). The association between patient- and physician-rated PB4W was considered very good, but the investigators observed increased disagreement with the number of lesions detected by physicians.

Although there was high agreement for all patients with 5 or fewer lesions, it was noted that more than a third of patients with 7 or more lesions varied 2 standard deviations or more from the mean. In a multiple linear regression, the physician found 0.36 lesion for every PB4W. Only Hurley stage 2 and 3 significantly affected the outcome with an approximate increase of 1.4 and 5.4 lesion, respectively.

The researchers noted that not all PB4W may be present during a clinical examination, primarily because of the changing nature of HS. They added that evaluation of clinical presentation should be focused on only lesions that are most meaningful (ie, painful) to patients, which can be accomplished through use of the International HS Severity Score System or Severity Assessment of HS score. “The adoption of these assessment tools into the clinical setting would therefore both help us and our patients to best evaluate disease development and treatment response,” the researchers wrote.

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Disclosure: This clinical trial was supported by the Leo Foundation. Several study authors declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures.

Reference

Kjaersgaard Andersen R, Saunte DML, Jemec GBE. What counts? The relationship between patient estimated numbers of painful hidradenitis suppurativa lesions over 4 weeks compared with clinician’s lesion count at the time of examination. Published online June 2, 2020. J Eur Acad Dermatol Venereol. doi:10.1111/jdv.16704

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