The use of nonstandardized and inadequately validated outcome measures in atopic eczema trials is a major obstacle to practising evidence-based dermatology. The Harmonising Outcome Measures for Eczema (HOME) initiative is an international multiprofessional group dedicated to atopic eczema outcomes research. In June 2011, the HOME initiative conducted a consensus study involving 43 individuals from 10 countries, representing different stakeholders (patients, clinicians, methodologists, pharmaceutical industry) to determine core outcome domains for atopic eczema trials, to define quality criteria for atopic eczema outcome measures and to prioritize topics for atopic eczema outcomes research. Delegates were given evidence-based information, followed by structured group discussion and anonymous consensus voting. Consensus was achieved to include clinical signs, symptoms, long-term control of flares and quality of life into the core set of outcome domains for atopic eczema trials. The HOME initiative strongly recommends including and reporting these core outcome domains as primary or secondary endpoints in all future atopic eczema trials. Measures of these core outcome domains need to be valid, sensitive to change and feasible. Prioritized topics of the HOME initiative are the identification/development of the most appropriate instruments for the four core outcome domains. HOME is open to anyone with an interest in atopic eczema outcomes research.

Summary This article is a report of the fourth meeting of the Harmonising Outcome Measures for Eczema (HOME) initiative held in Malmö, Sweden on 23–24 April 2015 (HOME IV). The aim of the meeting was to achieve consensus over the preferred outcome instruments for measuring patient‐reported symptoms and quality of life for the HOME core outcome set for atopic eczema (AE). Following presentations, which included data from systematic reviews, consensus discussions were held in a mixture of whole group and small group discussions. Small groups were allocated a priori to ensure representation of different stakeholders and countries. Decisions were voted on using electronic keypads. For the patient‐reported symptoms, the group agreed by vote that itch, sleep loss, dryness, redness/inflamed skin and irritated skin were all considered essential aspects of AE symptoms. Many instruments for capturing patient‐reported symptoms were discussed [including the Patient‐Oriented SCOring Atopic Dermatitis index, Patient‐Oriented Eczema Measure (POEM), Self‐Administered Eczema Area and Severity Index, Itch Severity Scale, Atopic Dermatitis Quickscore and the Nottingham Eczema Severity Score] and, by consensus, POEM was selected as the preferred instrument to measure patient‐reported symptoms. Further work is needed to determine the reliability and measurement error of POEM. Further work is also required to establish the importance of pain/soreness and the importance of collecting information regarding the intensity of symptoms in addition to their frequency. Much of the discussion on quality of life concerned the Dermatology Life Quality Index and Quality of Life Index for Atopic Dermatitis; however, consensus on a preferred instrument for measuring this domain could not be reached. In summary, POEM is recommended as the HOME core outcome instrument for measuring AE symptoms.

Summary This is the report from the fifth meeting of the Harmonising Outcome Measures for Eczema initiative (HOME V). The meeting was held on 12–14 June 2017 in Nantes, France, with 81 participants. The main aims of the meeting were (i) to achieve consensus over the definition of the core domain of long‐term control and how to measure it and (ii) to prioritize future areas of research for the measurement of the core domain of quality of life (QoL) in children. Moderated whole‐group and small‐group consensus discussions were informed by presentations of qualitative studies, systematic reviews and validation studies. Small‐group allocations were performed a priori to ensure that each group included different stakeholders from a variety of geographical regions. Anonymous whole‐group voting was carried out using handheld electronic voting pads according to predefined consensus rules. It was agreed by consensus that the long‐term control domain should include signs, symptoms, quality of life and a patient global instrument. The group agreed that itch intensity should be measured when assessing long‐term control of eczema in addition to the frequency of itch captured by the symptoms domain. There was no recommendation of an instrument for the core outcome domain of quality of life in children, but existing instruments were assessed for face validity and feasibility, and future work that will facilitate the recommendation of an instrument was agreed upon.

SummaryThis report provides a summary of the third meeting of the Harmonising Outcome Measures for Eczema (HOME) initiative held in San Diego, CA, U.S.A., 6–7 April 2013 (HOME III). The meeting addressed the four domains that had previously been agreed should be measured in every eczema clinical trial: clinical signs, patient-reported symptoms, long-term control and quality of life. Formal presentations and nominal group techniques were used at this working meeting, attended by 56 voting participants (31 of whom were dermatologists). Significant progress was made on the domain of clinical signs. Without reference to any named scales, it was agreed that the intensity and extent of erythema, excoriation, oedema/papulation and lichenification should be included in the core outcome measure for the scale to have content validity. The group then discussed a systematic review of all scales measuring the clinical signs of eczema and their measurement properties, followed by a consensus vote on which scale to recommend for inclusion in the core outcome set. Research into the remaining three domains was presented, followed by discussions. The symptoms group and quality of life groups need to systematically identify all available tools and rate the quality of the tools. A definition of long-term control is needed before progress can be made towards recommending a core outcome measure.What's already known about this topic? Many different scales have been used to measure eczema, making it difficult to compare trials in meta-analyses and hampering improvements in clinical practice. HOME core outcome measures must pass the OMERACT (Outcome Measures in Rheumatology) filter of truth (validity), discrimination (sensitivity to change and responsiveness) and feasibility (ease of use, costs, time to perform and interpret). It has been previously agreed as part of the consensus process that four domains should be measured by the core outcomes: clinical signs, patient-reported symptoms, long-term control and health-related quality of life. What does this study add? Progress was made towards developing a core outcome set for measuring eczema in clinical trials. The group established the essential items to be included in the outcome measure for the clinical signs of eczema and was able to recommend a scale for the core set. The remaining three domains of patient-reported symptoms, long-term control and health-related quality of life require further work and meetings to determine the core outcome measures.

The results of this study are substantial and clearly demonstrate the deep impact of AD on sexual health, its relationship with disease-related burden and alterations to quality of life. Psychosociological as well as neurosensory phenomena could help to understand these data.

Atopic dermatitis (AD) profoundly alters quality of life in adults. There are few studies concerning patient burden in AD (1), since burden of disease is a recent concept that includes broader aspects of disease-related disability (2), such as psychological, physical, social, and economic factors (2-4). It is possible that the burden of skin diseases may be as great as that of other chronic diseases (5). This study (Eczema Cohorte Longitudinale Adultes; ECLA) assessed the burden of AD using the Atopy Burden Score-Adult (ABS-A), a recently developed specific tool, and compared the results with those obtained with 3 different quality of life scales. PATIENTS AND METHODS Patients with AD were members of the French Association of Eczema (Association Française de l'Eczéma) or outpatients recruited in 4 dermatology centres in France (Brest-Bordeaux-Créteil-Reims). The patients answered questions on their socio-demographic data, disease history and management data; location of lesions; impact on sexuality, partners and family, and professional life; and the financial cost of the disease. Disease severity was evaluated using the Patient-Oriented SCORing Atopic Dermatitis (PO-SCORAD) index. In addition, patients were asked to complete 3 generic quality of life questionnaires (Short Form-12 (SF-12), Dermatology Quality of Life Index (DLQI) and Euro-QoL-5 Dimensions (EQ-5D)) and an AD-specific burden questionnaire, the ABS-A. The PO-SCORAD index has a self-assessment score of AD (6). Although the PO-SCORAD is not recommended to assess clinical signs of AD, it is convenient to define the following large classes of severity: mild (PO-SCORAD score < 25), moderate (between 25 and 50) and severe (> 50). The SF-12 is a short version of the Short Form-36 (SF-36), a generic measure enabling assessment of health status in the general population (7). Two scores, the Physical Component Summary (PCS-12) and the Mental Component Summary (MCS-12), can be calculated from the 12 questions of the SF-12. There is no overall score. A higher score indicates a better quality of life (8). The DLQI is a health quality of life scale specific to dermatological disorders (9). A total score (between 0 and 30) is calculated and can be expressed as a percentage. A higher score indicates a worse quality of life. The EQ-5D has 5 dimensions (Mobility, Self-care, Usual activities, Pain/Discomfort, Anxiety/Depression) (10). At the end of the questionnaire, a visual analogue scale (EuroQoL-visual analogic scale; EQ-VAS) records the respondent's self-rated health on a 20-cm vertical scale (score range 0-100).

Atopic dermatitis has a negative impact on quality of life in patients and their families. However, there have been very few studies of the impact of atopic dermatitis on adolescents and their relatives. The objective of this study was to evaluate the impact of atopic dermatitis in the daily lives of adolescents between 12 and 17 years of age in the French population and to assess the burden of the disease on their families. Quality of life was measured in 399 parents of adolescents with atopic dermatitis and in the adolescents themselves. Impairment of quality of life in the adolescents was associated with disease severity. Moreover, in children aged 12–14 years, quality of life was worse with increasing age, with decreasing disease duration, and when parents had atopic dermatitis. In children aged 15–17 years quality of life was worse when the parent who answered the questionnaire was male and when the parent was <45 years old. The burden of atopic dermatitis was higher in parents of older children, in parents with children with higher disease severity, with shorter disease duration, in male parents, and in parents aged < 45 years. The burden of atopic dermatitis in adolescents and their parents is considerable and should be taken into account in the management of atopic dermatitis.

Atopic dermatitis (AD) occurs in approximately 2-3% of adults. The aim of this study was to develop and validate the self-administered Atopic Dermatitis Burden Scale for Adults (ABS-A). Patients were enrolled consecutively from those attending the Station Thermale Avène for a diagnosis of AD. ABS-A was developed using standard methodology, and consisted of 3 phases: exploratory, development, and validation. Internal consistency (Cronbach's α), concurrent validity (Spearman's correlation between ABS-A, SF-12 and Dermatology Life Quality Index [DLQI)]), and discriminant validity, were analysed. A total of 128 adults (68.8% females) completed the ABS-A, consisting of 18 items grouped into 4 domains. ABS-A showed good internal coherence (Cronbach's α, 0.89) and was correlated with both SF-12 components [r = -0.36, p < 0.0001 (Physical); r = -0.52, p < 0.0001 (Mental)] and DLQI (r = 0.78; p < 0.0001). The ABS-A score varied significantly according to AD severity. To our knowledge, ABS-A is the first specific tool for assessing AD burden in adult patients.