The Refined Hurley Patient Questionnaire: An Accurate Self-assessment Instrument for Deriving the Correct Refined Hurley Stage in Hidradenitis Suppurativa

Rondags, Angelique; Volkering, Rob J.; Turcan, Iana; Zuidema, Yolinde S.; Janse, Ineke C.; Hórvath, Barbara

doi:10.2340/00015555-3126

Cited by 4 publications

(4 citation statements)

References 7 publications

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“…Risk factors (sex, BMI, smoking history) and FO tetrad components defined five distinct categories in Rondags et al 26 They manifested different clinical characteristics, with comedones being more frequent in the ‘females with stereotypical HS’ and ‘male HS’ groups (58% and 55.3%) versus the ‘females with a single exogenous risk factor for HS’ category and sinus tracts were predominant in the ‘male HS’ subtype. No risk factors or FO comorbidities were observed in the ‘limited HS’ subtype.…”

Section: Resultsmentioning

confidence: 99%

“…137 Concordance in classifications might relate to the existence of a limited set of variables considered for phenotyping. When adding elements such as comorbidities, laboratory and imaging assessments, quality of life, level of disease-related distress and treatment modalities, more complex subgroups were described, 18,24,26 with significant and possibly constant contributors to phenotypes. However, such attempts have not been validated, as they include hospital-referred patients who might form overrepresented groups without scalable forms at a population level.…”

Section: Discussionmentioning

confidence: 99%

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Hidradenitis suppurativa: Detangling phenotypes and identifying common denominators

Vișan,

Căruntu,

Costache

et al. 2023

Acad Dermatol Venereol

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Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease with a severe impact on patients' quality of life through its recurrent and painful nature, as well as its comorbidity burden. The shift in the pathogenic paradigm from a condition of the apocrine glands to an autoinflammatory disease associated with follicular destruction has rendered its understanding difficult, as there are still large gaps in pinpointing the underlying mechanisms, which cannot currently explain the existing clinical variation and as a result, translate into suboptimal therapy. Multifactorial involvement is hypothesized, with an implication of genetic mutations, microbiome dysbiosis, cytokine upregulation and environmental factors. Clinical observation is fundamental for diagnosis, however, the marked heterogeneity in presentation leads to delays in detection and challenges in treatment selection, showcasing clear limits in defining the link between genetic aspects of HS, the role of epigenetic factors and its pathogenic pathways. There have been attempts to formulate phenotypes that could aid in prognostication and management, however, current classification schemata show significant overlap and no validation through longitudinal studies. In this context, nomenclature poses a great challenge due to the lack of global agreement in the definition of lesions, which should be addressed by future research to enable simplified recognition and allow for more precise severity scoring. This could be complemented by the addition of extra dermatologic findings or paraclinical assessment in constructing phenotypes. The development of valid, predictive and reliable classifications of HS may lead to an improvement in comprehending its pathophysiology, favouring a more personalized approach in management. This could be achieved through consensus in the characterization of clinical features and data gathering, as well as validation attempts for described phenotypes. Ultimately, the genotype‐endotype‐phenotype correlation in HS requires targeted, systematic inquiries and should be addressed more largely to broaden the perspective on this debilitating entity.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Hidradenitis suppurativa: Detangling phenotypes and identifying common denominators

Vișan,

Căruntu,

Costache

et al. 2023

Acad Dermatol Venereol

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“…This low proportion of Hurley stage I may be explained by HS participants who register on ComPaRe being most concerned by their disease because they are more severely affected. It could be also an incorrect evaluation of Hurley stage self-assessment by participants, although several studies showed an interrater reliability of 76% between patients and physicians in the assessment of Hurley stage using photographs [52,53].…”

Section: Discussionmentioning

confidence: 99%

Baseline Characteristics of a National French E-Cohort of Hidradenitis Suppurativa in ComPaRe and Comparison with Other Large Hidradenitis Suppurativa Cohorts

et al. 2021

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Background: Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition substantially impacting patients’ quality of life; the pathogenesis remains unclear, and treatment is complex and not yet standardized. Observational data are increasingly being used to evaluate therapeutics in “real-life” interventions, and the development of e-cohorts is offering new tools for epidemiological studies at the population level. Objective: The aim of this study was to describe the clinical characteristics and treatment history of HS participants in the Community of Patients for Research (ComPaRe) cohort and to compare these to other cohorts. Methods: We performed a cross-sectional study of the baseline data of HS participants in ComPaRe, an e-cohort of patients with chronic diseases. Data were collected using patient-reported questionnaires about clinical-demographic aspects, quality of life, and treatment history. Results: A total of 396 participants (339 females, 57 males) were included (mean age 38 years); 83 (21%) had a family history of HS, 227 (57.3%) were current smokers, and 241 (60.9%) were overweight or obese. Most of the participants declared a Hurley stage II (n = 263, 66.4%) or III (n = 76, 20.3%). The breast was more frequently affected in women than men (37.5 vs. 5.3%, p < 0.0001), whereas the dorsal region was more frequently affected in men (39.5 vs. 10.9%, p < 0.0001). Increased disease stage was associated with obesity (25.9 vs. 33.8 vs. 51.3%, p = 0.02) and some HS localizations (genital [p < 0.005], pubis [p < 0.007], gluteal fold [p = 0.02], and groin [p < 0.0001]). The most frequently prescribed treatments were oral antibiotics (n = 362, 91.4%), especially amoxicillin-clavulanic acid and cyclins. Less than 10% of participants received biologics. Most of these results were consistent with previously published cohorts. Conclusion: Recruitment of participants by such a web platform can be a faster way to get relevant scientific data for a wide variety of patients that could be used for epidemiological studies and to evaluate therapeutics in “real-life” interventions.

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“…Patient-focused data provide a comprehensive land-scape of patient satisfaction with disease management and the issued treatment. A growing body of evidence supports that patient reports are accurate ( 18 , 19 ) and, as stated in a recent phase II study, may be even more sensitive than global assessments by physicians ( 20 ). Reinforced by a recommendation of the HS ALLIANCE ( 16 ) to include patient-reported outcome (PRO) measures in studies, several PRO studies have been conducted for HS to evaluate quality of life, symptoms, pain, disease severity, and effectiveness of specific treatments ( 21 – 23 ).…”

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confidence: 98%

Hidradenitis Suppurativa International Online Community: Patient Characteristics and a Novel Model of Treatment Effectiveness

Barak-Levitt

Held²,

Synett³

et al. 2022

Acta Derm Venereol

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Treatment for hidradenitis suppurativa is diverse, yet frequently unsatisfactory. The aims of this study were to create a reproducible artificial intelligence-based patient-reported outcome platform for evaluation of the clinical characteristics and comorbidities of patients with hidradenitis suppurativa, and to use this to grade treatment effectiveness. A retrospective patient- reported outcome study was conducted, based on online questionnaires completed by English-speaking patients registered to the hidradenitis suppurativa StuffThatWorks® online community. Data collected included patient characteristics, comorbidities and treatment satisfaction. These were recoded into scalable labels using a combination of machine learning algorithm, manual coding and validation. A model of treatment effectiveness was generated. The cohort included 1,050 patients of mean ± standard deviation age 34.3 ± 10.3 years. Greater severity of hidradenitis suppurativa was associated with younger age at onset (p < 0.001) and male sex (p < 0.001). The most frequent comorbidities were depression (30%), anxiety (26.4%), and polycystic ovary syndrome (16.6%). Hurley stage I patients rated topical agents, dietary changes, turmeric, and pain relief measures more effective than tetracyclines. For Hurley stage II, adalimumab was rated most effective. For Hurley stage III, adalimumab, other biologic agents, systemic steroids, and surgical treatment were rated more effective than tetracyclines. Patients with hidradenitis suppurativa often have comorbid psychiatric and endocrine diseases. This model of treatment effectiveness provides a direct comparison of standard and complementary options.

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The Refined Hurley Patient Questionnaire: An Accurate Self-assessment Instrument for Deriving the Correct Refined Hurley Stage in Hidradenitis Suppurativa

Cited by 4 publications

References 7 publications

Hidradenitis suppurativa: Detangling phenotypes and identifying common denominators

Hidradenitis suppurativa: Detangling phenotypes and identifying common denominators

Baseline Characteristics of a National French E-Cohort of Hidradenitis Suppurativa in ComPaRe and Comparison with Other Large Hidradenitis Suppurativa Cohorts

Hidradenitis Suppurativa International Online Community: Patient Characteristics and a Novel Model of Treatment Effectiveness

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