Inconsistent outcome selection and measurement remain major barriers to evidence synthesis in dermatology. We introduce the CHORD COUSIN Collaboration (C3) Manual and Checklist, developed through an international collaborative process, which consolidates existing methodological guidance into a structured, practical framework to support the development and implementation of core outcome sets. By improving standardization and providing methodological support, C3 aims to enhance comparability across studies and strengthen dermatological research.

The concept of a therapeutic window of opportunity, defined as the period from symptom onset during which treatment initiation yields the most favorable patient outcomes, is applied in routine clinical practice across a range of inflammatory conditions. It has become an increasingly important area of interest in hidradenitis suppurativa (HS), a disease in which recurrent inflammation and accumulating damage can lead to irreversible destruction of skin architecture. Biologic therapies, aiming to suppress the inflammatory burden and prevent disease progression, are currently only permitted in moderate to severe HS. However, as there is no consensus definition of moderate disease, physicians may face uncertainty about when to consider or switch biologic therapy. To identify the boundaries of the window of opportunity within HS, global HS experts have developed frameworks for defining moderate HS and disease progression. It is proposed that prompt medical treatment should be administered to patients with moderate HS, defined as patients with inadequate control of HS symptoms on conventional therapies, or one inflamed skin tunnel (draining/non-draining), or four or more inflammatory lesions (including inflammatory nodules and abscesses) involving two or more anatomic areas. Furthermore, the proposed definition for disease progression is the development of one or more new tunnel(s) and/or the extension of existing tunnels, or development of one or more persistent HS lesions in an anatomical region not previously affected, or any increase in the number of persistent HS lesions in an affected anatomical region. The proposed frameworks aim to provide practical advice to physicians and support targeting the window of opportunity during routine clinical practice.

Hidradenitis suppurativa (HS) is a chronic, systemic, immune-mediated disease requiring multimodal care, which is crucial for raising awareness and advancing treatment. This project aimed to establish consensus among HS experts to define HS Competence Centers (HSCC) criteria using the Delphi consensus method. Overall, 22 global HS experts (3 patient representatives and 19 healthcare professionals [HCPs]) from 16 countries across 5 continents were invited to participate. Subsequently, a three-step Delphi polling was conducted among the HS experts from 20 May 2024 to 8 July 2024. A 50

ABSTRACT Background Hidradenitis suppurativa (HS) is a chronic, debilitating inflammatory skin condition often accompanied by malodorous drainage. Drainage affects quality of life, contributing to stigma, emotional distress, and physical challenges. Recognising the role of drainage in HS, the HiSTORIC (Hidradenitis SuppuraTiva cORe outcomes set International Collaboration) initiative identified it as a key symptom in clinical trials and developed the The HIdradenitis suppurativa DrainagE (HIDE) Scale. Objectives This study aimed to explore patients' experiences of drainage to guide person‐centred care approaches. Methods A qualitative secondary analysis was conducted using data from the parent study on The HIDE Scale©️. The data included 38 interviews with patients aged ≥ 18 years, diagnosed with HS, and experiencing drainage. Reflexive thematic analysis was applied using an inductive and semantic approach, guided by person‐centred theoretical perspectives. Results Three overarching themes emerged: (1) Drainage is difficult to explain due to its unpredictable and complex nature; (2) Drainage impacts mental well‐being, contributing to feelings of social stigma, frustration, and emotional distress; and (3) Drainage involves significant physical difficulties, including malodour, frequent dressing changes, and daily activity disruption. Patients described drainage by volume, consistency, colour, and location, emphasising its multidimensional impact. Despite these challenges, pain was identified as the most debilitating symptom of HS. Conclusions This study highlights the physical, psychological, and social impact of drainage in HS, emphasising its complexity and unpredictability. Patients described drainage as a multifaceted experience that profoundly affects their quality of life. To improve care, healthcare providers should integrate an assessment of drainage into clinical practice, utilising standardised tools like The HIDE Scale©️. Addressing physical and psychosocial aspects of drainage through open and empathetic discussions can reduce stigma, foster a sense of support, and enhance patient–clinician relationships. Adopting person‐centred approaches validates patients' experiences and holistic assessment is essential for improving care strategies and the well‐being of individuals living with HS.

Importance:Hidradenitis suppurativa (HS) is a chronic inflammatory skin disorder with high psychosocial burden. Despite growing use of patient-reported outcome measures (PROMs) in HS trials, variance in quality and validation of existing instruments remains to be studied. Objective:To systematically review HS-specific PROMs using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) framework, evaluating development quality and psychometric evidence, and to perform a meta-analysis of key properties to summarize the evidence base and provide recommendations for clinical and research use. Data Sources:MEDLINE, Embase, and PubMed were searched from inception to October 23, 2025, for English-language studies. Study Selection:Articles describing the development or validation of HS-specific PROMs that evaluated at least 1 psychometric property were included. Generic instruments (eg, Dermatology Life Quality Index, pain numeric rating scale) were excluded. Screening was conducted by 2 independent reviewers. Data Extraction and Synthesis:Two reviewers independently extracted data, appraised risk of bias with the COSMIN checklist, and graded quality of evidence using COSMIN-modified Grading of Recommendations Assessment, Development, and Evaluation (GRADE). Random-effects meta-analysis pooled Cronbach α and correlation coefficients; heterogeneity was quantified using I2. Main Outcomes and Measures:COSMIN-guided appraisal and graded quality of evidence of PROM measurement properties, including content validity, structural validity, internal consistency, reliability, responsiveness, and measurement error. Results:Of 504 records screened, 26 studies (14 developmental, 12 validation) met the criteria (total number of patients across 26 studies was 5811; age ranged from median 33.9 [range, 25-41] to mean [SD] 46.9 [14.1] years), identifying 15 unique HS-specific PROMs (10 health-related quality of life, 4 symptom, 1 treatment benefit). Fourteen achieved sufficient content validity and 8 met the highest standards for rigorous instrument development. Meta-analysis demonstrated strong internal consistency and construct validity for the 17-item Hidradenitis Suppurativa Quality of Life (HiSQOL-17) PROM (pooled Cronbach α = 0.94; I2 = 81.3%; pooled Pearson r = 0.84; I2 = 74%; pooled Spearman r = 0.88, I2 = 29%). Of 7 evaluated PROMs, 2 displayed sufficient internal consistency. The remainder were indeterminate due to absent or low-quality evidence for unidimensionality. Test-retest reliability was sufficient in 9 PROMs, and responsiveness was rated sufficient in 5. No studies evaluated measurement error. Seven PROMs met COSMIN criteria for recommendation. Conclusions and Relevance:In this study, 7 PROMs demonstrated sufficiency of both content validity and either internal consistency or another relevant measurement property (formative instruments). Further research is needed to strengthen the validation of HS-specific instruments.

To date, the primary endpoint of hidradenitis suppurativa (HS) clinical trials is typically a focused lesion count, which has been shown to be error prone and which may not comprehensively measure the inflammatory burden. Unlike lesions of other inflammatory skin diseases such as atopic dermatitis, vitiligo and alopecia areata, HS lesions exhibit substantial morphological heterogeneity. Accordingly, the Investigator Global Assessment of Hidradenitis Suppurativa (I-GLASS) instrument was developed.

Abstract A person’s autism has a huge psychosocial impact on families, yet this impact is often ignored or neglected. Measuring this impact is critical to planning and providing appropriate support services to impacted families. This study aims to measure the impact of a person’s autism on the quality of life (QoL) of their family members using the generic and extensively validated Family Reported Outcome Measure (FROM-16). A UK cross-sectional online study recruited family members and partners of people with autism through the Autism Research Centre and Healthwise Wales. The family members and partners of people with autism completed FROM-16. The data analysis included descriptive and other statistics, including nonparametric Mann–Whitney U-tests and Kruskal–Wallis tests for group comparisons. Multiple linear regression was used to investigate relationships between dependent and independent variables. FROM-16 descriptive score banding was use to describe the severity of the impact of a person’s autism on family members and partners. In total 129 family members or partners of people with autism completed the FROM-16. The family members or partners had a mean age of 51.2 years (SD 12.8) and 100 (77.5%) were female. The people with autism has a mean age of 28.1 years (SD 17.3) and 48 (37.2%) were female. The FROM-16 mean total score was 18.5 (SD 8.6), indicating ‘a very large effect’ on the QoL of family members, with being female and being a parent both significant predictors of impact. ‘Feeling worried’ had the highest mean score of 1.55 (out of 2), followed by ‘feeling frustrated’ (mean 1.45 out of 2), ‘family activities’ (mean = 1.40, SD = 0.7) and ‘difficulty caring’ (mean = 1.31, SD = 0.7). The majority (60.5%) had a mean FROM-16 score ≥ 17, indicating ‘a very large effect’ to ‘extremely large effect’ on the QoL of these family members. The QoL of family members and partners of people with autism is impacted profoundly, highlighting the need for strong family-­centred support, equipping families with skills to help their family members with autism live fuller lives. Using the FROM-16 routinely can help identify and address the needs of these family members.

Hidradenitis suppurativa (HS) is a chronic, recurrent inflammatory skin disease characterized by painful nodules, abscesses, and epithelialized tunnels, predominantly affecting flexural regions. With a global prevalence of approximately 1%, HS has a significant negative impact on quality of life. Multi-omics and histopathology studies have revealed a complex interplay between innate and adaptive immunity in HS, with neutrophils emerging as important drivers of inflammation. While therapies targeting TNF-α and IL-17 isoforms offer a degree of benefit, significant unmet need remains. Neutrophil signatures in HS lesions and the circulation underscore the rationale for selective modulation of neutrophil function. Strategies advancing through clinical trials include inhibition of chemokine-mediated trafficking, neutrophil serine protease inactivation and suppression of neutrophil extracellular traps (NETs), which amplify inflammatory and autoimmune responses. These emerging therapies mark a significant shift toward targeted neutrophil modulation, offering new opportunities to improve outcomes for patients with HS.

Hidradenitis suppurativa (HS) has a profound negative impact on patients' Quality of Life (QoL). The European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and Patient Oriented Outcomes and TF on Acne, Rosacea and Hidradenitis Suppurativa (ARHS), together with external experts, decided to provide an updated position statement on QoL measurement in HS. In our previous position statement on HS, we stated that a Dermatology Life Quality Index (DLQI) score of 0-1, corresponding to no effect on patient's life according to the DLQI banding descriptions, may be considered as a difficult to reach but important treatment goal: achievement of this goal has since been used as an efficacy criterion in several clinical trials. For many HS treatment methods, there is still a lack of well-organized randomized clinical trials with sufficient participant numbers in which QoL instruments have been used as outcome measures. The DLQI is the most widely used QoL instrument in HS. Clinical recommendations and treatment efficacy are based on its score grading system and minimal clinically important difference (MCID). The HS-specific QoL instruments HSIA, HSQoL-24, HiSQOL, and QoL-HS have a satisfactory number of items for routine clinical use and short recall periods. HiSQOL and HSQoL-24 have score grading systems and the MCID for HiSQOL has been established. The TF on QoL and Patient Oriented Outcomes and TF on ARHS recommend that QoL be assessed in HS: dermatology-specific and HS-specific instruments may be used alongside each other.

Patients with hidradenitis suppurativa experience frequent pain which affects mood, quality of life, relationships and physical activity. Surveys and focus groups revealed that dermatologists rank pain management importance more highly than pain specialists and healthcare professionals in primary care but that they lack confidence in managing it. This study highlights the need for improved pain management education for dermatologists, multidisciplinary care pathways and better coordination between dermatology and primary care to support patients.

Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that affects physical, social and emotional aspects of life for people living with HS (plwHS). Although many plwHS consider pain the most bothersome symptom, fatigue and sleep disturbance are underexplored in research and rarely discussed in clinical practice. This article shares perspectives from plwHS and people working with patients, including healthcare professionals (HCPs), from Europe and North America, on the impact of HS-related fatigue and sleep disturbance on quality of life (QoL). Fatigue was described as a debilitating symptom affecting QoL, with HCPs often noting that plwHS were unaware of the full impact of fatigue until treatment improved their HS symptoms. Sleep disturbance was mainly attributed to HS-related pain, pruritus and lesion drainage, with sleep deficits accumulating over time. The strain of HS impacted personal relationships, with plwHS expressing less interest in social interactions or intimate relationships, leading to feelings of guilt, failure, isolation and reduced self-esteem. Fatigue and sleep disturbance also affected work productivity, and consequently, career progression and financial stability. Recognizing the multifaceted HS symptoms, providing reasonable adjustments in the workplace, encouraging open dialogue with HCPs and measuring fatigue with a validated instrument could help improve QoL of plwHS.

Background:Managing patients with moderate-to-severe atopic eczema (AE) is challenging. Novel systemic immunomodulatory therapies are effective but costly, whereas conventional treatments require more intense safety monitoring. While available randomized trials assess efficacy, they do not reflect real-world practice or cost-effectiveness. The UK-Irish Atopic Eczema Systemic Therapy Register (A-STAR) was established to generate real-world evidence on systemic AE treatments. Objectives:To assess healthcare resource utilization, costs and health-related quality of life (HRQoL) over 1 year in participants in A-STAR, and to evaluate data quality in a pilot analysis. Methods:A-STAR is a multicentre prospective register that recruits paediatric (aged <16 years) and adult (aged ≥16 years) patients with AE who are initiating or switching systemic immunomodulatory therapy. Healthcare utilization [general practitioner (GP) visits, accident and emergency (A&E) department attendance, hospitalizations, specialist consultations and therapy costs] was valued using national average unit costs and tariffs. HRQoL was measured with the EuroQol 5 Dimension (EQ-5D). Results:Of 120 participants (92 adults and 28 children) with a median follow-up to 12 months, adults had higher mean healthcare costs per year than children, including A&E (£120.41 vs. £84.29), GP (£111.15 vs. £78.46) and specialist (£205.17 vs. £121.00) visits. Mean (SD) systemic therapy costs per year were £25 523 (£24 424) in adults and £20 242 (£18 994) in children, averaged across all treatment options. Mean EQ-5D scores improved from baseline to 1 year (from 0.608 to 0.769 in adults and from 0.482 to 0.751 in children). Conclusions:Systemic therapy improved HRQoL but incurred notable costs. A-STAR is well positioned to support future comparative economic evaluations of alternative treatment strategies to inform clinical and reimbursement decisions.