IMPORTANCE: The true prevalence of hidradenitis suppurativa (HS) is unknown. OBJECTIVE: To establish standardized overall and group-specific prevalence estimates for HS in the United States. DESIGN, ...SETTING, AND PARTICIPANTS: This retrospective analysis included a demographically heterogeneous population-based sample of more than 48 million unique patients across all US census regions. As of October 27, 2016, a total of 47 690 patients with HS were identified using electronic health record data. MAIN OUTCOMES AND MEASURES: Standardized overall point prevalence for HS and sex-, age-, and race-specific prevalence estimates of HS in the general US population. RESULTS: Of the 47 690 patients with HS (26.2% men and 73.8% women), the overall HS prevalence in the US population sample was 0.10%, or 98 per 100 000 persons (95% CI, 97-99 per 100 000 persons). The adjusted prevalence in women was 137 per 100 000 (95% CI, 136-139 per 100 000), more than twice that of men (58 per 100 000; 95% CI, 57-59 per 100 000; P < .001). The prevalence of HS was highest among patients aged 30 to 39 years (172 per 100 000; 95% CI, 169-275 per 100 000) compared with all other age groups (range, 15-150 per 100 000; P < .001). Adjusted HS prevalences among African American (296 per 100 000; 95% CI, 291-300 per 100 000) and biracial (218 per 100 000; 95% CI, 202-235 per 100 000) patients were more than 3-fold and 2-fold greater, respectively, than that among white patients (95 per 100 000; 95% CI, 94-96 per 100 000; P < .001). CONCLUSIONS AND RELEVANCE: Hidradenitis suppurativa is an uncommon, but not rare, disease in the United States that disproportionately affects female patients, young adults, and African American and biracial patients.
One of the major challenges faced with hidradenitis suppurativa (HS) is the variability in manifestations and treatment responses. Cazzaniga et al. (2020) conducted a cross-sectional study and latent ...class analysis to explain disease heterogeneity and formulate HS phenotypes. HS phenotypes might be useful for disease or treatment outcomes. Future studies should assess rater reliability and predictive validity for outcomes such as treatment response or disease progression.
Cutaneous damage caused by hidradenitis suppurativa (HS) is an important contributor to disease burden, independent of active lesions. Outcome measures used to specifically assess damage are becoming ...commonplace in the assessment of inflammatory diseases. However, no standardized method for assessing HS damage currently exists. The purpose of this study was to review outcome measures in HS that include constructs of both active disease and damage, review damage‐specific instruments used in other inflammatory and destructive diseases, and review instruments used to assess scars of various aetiologies. This ultimately provides insight into how attributes of different tools can be applied to develop an outcome measure specific to HS damage.
What is already known about this topic?
Hidradenitis suppurativa (HS) is a chronic, relapsing, inflammatory skin condition, which causes consequent cutaneous damage and scarring.
Damage caused by HS is highly prevalent and an important contributor to its morbidity.
Damage is an important component of inflammatory diseases that has proven its utility in a number of outcome measures; however, no standardized method for assessing HS damage currently exists.
What does this study add?
This narrative review assesses outcome measures used to measure damage in other inflammatory and destructive diseases.
Instruments used to assess damage in other diseases can provide a starting point for the development of a damage outcome measure for HS.
The purpose of this study was to review outcome measures in HS that include constructs of both active disease and damage, review damage‐specific instruments used in other inflammatory and destructive diseases, and review instruments used to assess scars of various etiologies. This ultimately provides insight into how attributes of different tools can be applied to develop an outcome measure specific to HS damage.
Linked Comment: P. Aarts and H.H. van der Zee. Br J Dermatol 2022; 187:282–283.
People with hidradenitis suppurativa (HS) are interested in dietary alterations to manage the condition. However, there are few data on the prevalence of this or the impact on HS activity. The ...objective of this study was to investigate the prevalence and impact of dietary alterations made by people with HS.
A cross-sectional survey was sent to people with HS through multiple sources. Participants reported food alterations in the prior 6 months. -Results: Overall, 242 complete surveys were included in this analysis; the mean age was 35.8 years, and most (87.5%) were women. The majority (75.8%, n = 182) altered at least one food from their diet. Within this group, 154 (84.6%) made changes to multiple food groups. The top 5 food groups that were altered were gluten (48.8%), dairy (44.2%), refined sugars (40.0%), tomatoes (36.7%), and alcohol (37.1%). Smoking was eliminated in 27.5% of participants. Some participants (30.9%) reported the change made the HS "much better."
Dietary alteration to manage HS was common among participants in this study. Some people reported improvement in HS activity, but some noted worsening. Additional research is needed to evaluate the efficacy of dietary alteration to manage HS and to better understand the underlying pathomechanisms.
Summary
Background
Janus kinase (JAK)‐mediated cytokine signalling contributes to local and systemic inflammation in hidradenitis suppurativa (HS).
Objectives
To describe the safety and efficacy ...results from two multicentre phase II trials of the JAK1 inhibitor INCB054707 in patients with moderate‐to‐severe HS.
Methods
Patients received open‐label INCB054707 15 mg once daily (QD; Study 1) or were randomized to INCB054707 30, 60 or 90 mg QD or placebo (3 : 1 within each cohort; Study 2) for 8 weeks. Eligible patients were aged 18–75 years and had moderate‐to‐severe HS (Hurley stage II/III disease), lesions present in at least two anatomical locations, and a total abscess and inflammatory nodule count ≥ 3. The primary endpoint for both studies was safety and tolerability. Secondary endpoints included HS Clinical Response (HiSCR) and other efficacy measures.
Results
Ten patients were enrolled in Study 1 (15 mg INCB054707) and 35 in Study 2 (INCB054707: 30 mg, n = 9; 60 mg, n = 9; 90 mg, n = 8; placebo, n = 9). Overall, 70% of patients in Study 1 and 81% of patients receiving INCB054707 in Study 2 experienced at least one treatment‐emergent adverse event; 30% and 42% of patients, respectively, had at least one treatment‐related adverse event. Among the evaluable patients, three (43%) in Study 1 and 17 (65% overall: 30 mg, 56%; 60 mg, 56%; 90 mg, 88%) receiving INCB054707 vs. 4 patients (57%) receiving placebo in Study 2 achieved HiSCR at week 8.
Conclusions
INCB054707 was well tolerated, with responses observed in patients with moderate‐to‐severe HS. The safety and efficacy findings from these studies demonstrate proof of concept for JAK1 inhibition in HS. The studies are registered on ClinicalTrials.gov (NCT03569371 and NCT03607487).
What is already known about this topic?
Hidradenitis suppurativa (HS) is a chronic, painful, inflammatory skin condition that can ultimately lead to irreversible tissue damage and scar formation.
Adalimumab (anti‐tumour necrosis factor‐α) is currently the only approved therapy for HS; however, responses are varied and are achieved in only approximately one‐half of patients.
Janus kinase (JAK)‐mediated cytokine signalling contributes to inflammatory processes and is a potential drug target in HS.
What does this study add?
The JAK1 inhibitor INCB054707 was well tolerated and produced rapid and dose‐dependent clinical responses in two phase II trials of patients with moderate‐to‐severe HS.
INCB054707, compared with placebo, generally resulted in numerical improvements in HS Clinical Response, abscess and inflammatory nodule count, International HS Severity Scoring System score, and patient‐reported outcome measures including skin pain and quality of life.
Linked Comment: C. Sibbald and R. Alhusayen. Br J Dermatol 2022; 186:768–769.
Plain language summary available online
IMPORTANCE: Actinic keratosis (AK) is a skin growth induced by UV light exposure that requires long-term management because a small proportion of the disease can progress to squamous cell carcinoma. ...The influence of how clinicians frame or present information to patients may affect decision making about AK. OBJECTIVE: To evaluate the differences in patients’ decisions on whether to receive treatment for AK related to information presentation or choice framing. DESIGN, SETTING, AND PARTICIPANTS: A prospective survey study was performed from June 1 to July 31, 2016, in participants who were able to read English. Participants were recruited through the Penn State Milton S. Hershey Dermatology Clinic and an online survey site. The survey was conducted through an online portal. A total of 571 individuals were recruited. Regression analysis, correlation coefficient analysis, and test-retest validation were conducted. MAIN OUTCOMES AND MEASURES: The proportions of patients choosing to receive treatment for AK. Analyses were performed to adjust for age, sex, educational level, history of skin cancer, and history of AK. RESULTS: Of the 571 recruited participants, 539 (94.4%) returned completed surveys. The mean (SD) age of respondents was 42.9 (17.8) years; 306 (56.8%) were women. The decision to receive treatment for AK varied from 57.7% (n = 311) to 92.2% (n = 497) for the 5 scenarios presented in the questions (P < .001). The question that presented AK as a “precancer” had the highest proportion of participants who preferred treatment (497 92.2%). Two questions that presented the risk of AK as not progressing to cancer had the lowest proportion of individuals who chose treatment (311 57.7% and 328 60.9%). Participants from the clinic and from the online portal were significantly different in age (mean SD age, 56.1 17.6 vs 33.3 10.0 years), sex (145 63.6% vs 161 51.8% were females), educational level (40 17.5% vs 80 25.7% had completed some graduate school), history of AK (46 20.2% vs 19 6.1% answered yes), and history of skin cancer (76 33.3% vs 15 4.8% answered yes) (all P ≤ .001). Based on a regression analysis, age, sex, and previous diagnosis of skin cancer were not significantly associated with the participants’ responses. CONCLUSIONS AND RELEVANCE: This study found that patients’ decisions on whether to receive treatment for AK is significantly affected by physician wording, especially with alterations in the presentation of risk of malignant transformation.
Hidradenitis suppurativa is a chronic, progressive inflammatory disease of the skin with many systemic implications. Hidradenitis suppurativa is frequently underdiagnosed or misdiagnosed, ...particularly because of heterogeneity in presentation and low disease recognition. Patients can see multiple types of health care providers, including primary care providers, along their journey to an accurate diagnosis. This review provides a comprehensive overview of the clinical presentation, associated comorbidities, and life impact associated with hidradenitis suppurativa. Disease features described here can facilitate earlier identification of hidradenitis suppurativa, differentiation from common mimickers, and timely referrals for multidisciplinary management when needed. Engagement of the medical community will also support comprehensive care strategies necessary in hidradenitis suppurativa.
We tested a new patient-reported outcome tool, the Hidradenitis Suppurativa Quality of Life (HiSQoL) questionnaire, which is designed to measure quality of life (QoL) in adults with hidradenitis ...suppurativa (HS). The HiSQoL demonstrated validity and reliability, and may be a useful tool for measuring QoL, especially in clinical trials testing new drugs in HS.
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