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.

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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.

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.


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