Hidradenitis Suppurativa Foundation

Hidradenitis suppurativa (HS) is a highly comorbid condition understudied in pediatric populations. Furthermore, the underrepresentation of Canadians in HS research limits our evaluation of care in real-world Canadian settings. To describe the demographics, clinical characteristics, psychosocial burden, and management of pediatric HS at a Canadian hospital. We developed the infrastructure for a Canada-wide HS registry and piloted it at a pediatric HS tertiary care centre. A retrospective review of patients seen was performed using data collection forms (DCFs) developed for the registry. The 39 patients included were 53.8% female and 100.0% nonsmokers. Asians were overrepresented compared to other North American studies. Most had Hurley stage II (60.5%) or III (28.9%) disease. Mean delay to diagnosis was 2.1 ± 2.0 years. Obesity (57.9%), acne (30.7%), folliculitis (23.1%), and trisomy 21 (23.1%) were the most common comorbidities. Patients with trisomy 21 had an age of HS onset 3 years younger (P = .0087), and 44.0% had concomitant disseminate and recurrent infundibulofolliculitis. Moderate-to-severe quality of life (QOL) impact was seen in 56.8% of patients, and 17.6% had reported bullying. Of patients prescribed biologics (59.0%), most used 1 (56.6%), while 39.1% switched to a second and 4.3% to a third biologic. Most adalimumab-initiated patients clinically improved (81.0%), but only 2 patients achieved complete remission. Follow-up patients (n = 14) had significant improvements in QOL (P = .038) and pain (P = .026) scores. Distinct demographics, severe disease, and low remission rates characterized our complex HS cohort. Prospective use of these DCFs will enhance our understanding of HS in Canada.

Surgical treatment is a key strategy for managing advanced hidradenitis suppurativa (HS), but postoperative recurrence remains a challenge. Understanding recurrence patterns and associated risk factors may help improve outcomes. The objectives were to evaluate surgical outcomes in patients with HS undergoing wide excision, to characterise surgical recurrence patterns, and to identify factors associated with each recurrence type. This was a retrospective, observational, single-centre study conducted on patients who underwent HS surgical procedures between 2018 and 2024. Demographic, clinical, surgical and follow-up data were analysed. Recurrence was defined as the reappearance of inflammatory lesions within 1cm of the surgical scar and subclassified as tunnel or abscess/inflammatory nodule (AN) recurrence. A total of 165 patients underwent 206 surgical procedures. Wide excision with secondary intention healing was the most common approach. The mean time to complete wound healing was 46.4days. The overall recurrence rate was 18.5%, with tunnel recurrence in 8.3% and AN recurrence in 10.2%. Tunnel recurrence was associated with Hurley stageIII, larger and deeper excisions and higher postoperative IHS4 scores, while AN recurrence was associated with BMI > 30 and preoperative ultrasound assessment. In multivariate analysis of overall recurrence, excised area was the only independent predictor (OR per cm2, 1.03; p = 0.020), while poorer preoperative inflammatory control and lack of ultrasound assessment showed trends toward increased risk. Differentiating between recurrence types may better reflect true surgical failure. Tunnel recurrence should be prioritized when evaluating surgical outcomes. Preoperative ultrasound and postoperative inflammatory control are key factors in minimizing recurrence.

Hidradenitis suppurativa is a chronic inflammatory disease characterised by painful, deep-seated nodules, abscesses, and draining tunnels in the skin of axillary, inguinal, genitoanal, or inframammary areas. In recent years, the body of knowledge in hidradenitis suppurativa has advanced greatly. This disorder typically starts in the second or third decade of life. The average worldwide prevalence is 1% but varies geographically. Hidradenitis suppurativa has a profound negative effect on patients' quality of life and on the gross value added to society. Comorbidities (eg, metabolic syndrome, inflammatory arthritis, and inflammatory bowel disease) frequently accompany skin alterations, because of systemic inflammation. Pathogenesis of hidradenitis suppurativa is complex and includes innate immune mechanisms (eg, macrophages, neutrophils, IL-1β, tumour necrosis factor [TNF], and granulocyte colony-stimulating factor), T-cell mechanisms (eg, IL-17 and IFN-γ), and B-cell mechanisms (eg, associated with dermal tertiary lymphatic structures and autoantibodies). Chronic inflammation leads to irreversible skin damage with tunnel formation and morbid scarring. Current treatment includes drug therapy (for the initial, purely inflammatory phase), combined drug and surgical therapy (for the destructive phase), or surgery alone (for the burnout phase). The first systemic therapies approved for hidradenitis suppurativa targeting TNF (adalimumab) and IL-17 (secukinumab and bimekizumab) have expanded drug therapy options for moderate-to-severe disease, which were previously mainly restricted to oral antibiotics. Moreover, there is a robust pipeline of immunomodulatory drugs in various stages of development for hidradenitis suppurativa. Aims of management should include early intervention to prevent irreversible skin damage, adequate control of symptoms including pain, and mitigation of extra-cutaneous comorbidities, all requiring early diagnosis and an interdisciplinary, holistic and personalised approach.

Therapeutic burden (TB) has been identified as a potential predictor of response to biologic therapy in hidradenitis suppurativa (HS). We aim to analyze the determinants of TB in real-world clinical settings among HS patients to explain this concept and its utility as an additional tool for guiding therapeutic decision-making. We conducted a cross-sectional study including all consecutive HS patients attending a specialized HS clinic between 2017 and 2024. The primary variable was TB, defined as the cumulative sum of prior systemic treatment cycles and surgical interventions for HS. We analyzed whether sociodemographic or clinical factors were associated with a higher TB. We included 557 HS patients. Of these, 50.81% were women, and the mean age was 41.87 (14.19) years. Most patients (62.30%) were referred from general dermatology consultations. The mean disease duration was 17.52 (11.51) years. Regarding disease severity, 46.50% presented with Hurley II, and 42.19% had an IHS-4 score between 4 and 10. Before their baseline visit, 9.70% of patients had received biological therapy, mostly adalimumab (88.89%). The mean TB was 2.42 (2.25) systemic medical and/or surgical interventions. Referral from general dermatology or other hospital departments, older age, longer disease duration, greater HS severity, presence of pilonidal sinus, and prior biological therapy were significantly associated with higher TB. Our findings suggest that TB comprehensively captures HS severity and progression factors. This metric could prove valuable in aiding decision-making for HS patients by indicating when a change in therapy might be necessary.

Hidradenitis suppurativa (HS) is a chronic, inflammatory skin disease with a profound disease burden. In recent years, the advent of biologic therapies has improved the treatment landscape for patients with moderate to severe HS. In this new therapeutic era, the role of the general practitioner (GP) in HS treatment is becoming more important than ever. This review discusses how to recognize and diagnose HS by detailing common symptoms. HS can also present with multiple comorbidities. The GP's role in screening for and treating these important comorbidities is pivotal. This review highlights the HS treatment landscape, with a specific focus on what the GP can recommend. The three approved biologics for treating HS include adalimumab, secukinumab and bimekizumab; the benefits and concerns of biologics in everyday clinical practice are detailed. In summary, this review serves as a HS management guide for GPs, with a particular focus on the biologic treatment landscape.

BackgroundHidradenitis suppurativa (HS) is a chronic, inflammatory, debilitating skin disease characterized by painful deep lesions and associated with substantial disease burden.ObjectivesThe objective of this study was to describe physician‐ and patient‐reported clinical unmet needs from a real‐world perspective.MethodsThis study used data from the Adelphi HS Disease Specific Programme, a point‐in‐time survey of dermatologists and their patients with HS in Europe and the United States. Dermatologists completed patient record forms (PRFs) for 5–7 consecutively consulting patients with HS; patients or carers of patients also optionally completed a patient/carer self‐completion questionnaire (PSC/CSC). Data collection included demographics, symptomatology and impact on quality of life (QoL).ResultsDermatologists (N = 312) completed PRFs for 1787 patients with HS; patient‐ and carer‐reported questionnaires (PSC/CSC) were completed for 33.1% (591/1787) of patients. The mean age was 34.4 ± 12.2 years and 57.6% of patients were female (1029/1787). Physician‐judged disease severity at sampling was categorized as mild in 66.0% (1179/1787), moderate in 29.3% (523/1787) and severe in 4.7% (85/1787) of patients. Deterioration or unstable condition over the previous 12 months was described by 17.1% [235/1372] and 12.6% [41/325] of physician‐ and patient/carer‐reported cases, respectively. Despite receiving treatment, high proportions of patients still experienced symptoms at sampling (general pain/discomfort [49.5%, 885/1787]; inflammation/redness of lesions/abscesses [46.1%, 823/1787] and itching [29.9%, 535/1787]); these symptoms were more frequent in patients with moderate or severe disease. Patients reported a mean Dermatology Life Quality Index score of 5.9 ± 5.4 (555/591; mild, 4.1 ± 4.3; moderate, 9.4 ± 5.4; severe, 13.3 ± 5.5) and a mean Hidradenitis Suppurativa Quality of Life score of 11.0 ± 10.6 (518/591; mild, 7.6 ± 8.3; moderate, 17.7 ± 10.0; severe, 31.0 ± 15.4) indicating a substantial impact on QoL.ConclusionsPatients with HS experienced a high disease burden despite being actively treated by a dermatologist. This study demonstrates that the burden of HS disease is generally poorly managed with a considerable impact observed on patients' QoL.

Lyons, Alexis B. MD; Zubair, Raheel MD; Kohli, Indermeet PhD; Hamzavi, Iltefat H. MD Author Information