Defining and measuring “eczema control”: An international qualitative study to explore the views of those living with and treating atopic eczema

Background Atopic eczema (also known as eczema) is a chronic, inflammatory skin condition that often afflicts patients’ health and wellbeing. The Harmonising Outcome Measures for Eczema (HOME) initiative recommends that “long-term control of eczema” is measured in all clinical trials 3 months or longer in duration. However, little has been published on what eczema control means to those living with or treating atopic eczema. Objectives To i) develop understanding of what eczema control means to patients, carers and clinicians and ii) explore the feasibility and acceptability of different ways of measuring eczema control in the long-term. Methods Online focus groups explored patients/carers experiences in the UK, USA, the Netherlands, France, Sweden and Japan, and an international online survey gathered views of clinicians. The Framework Method was used to analyse the focus groups and thematic analysis was used to analyse survey data. All findings were integrated into a theoretical framework to create overarching themes that cut across these diverse groups. Results Eight focus groups with patients (16 years+) and eight groups with carers of children took place (N=97). Sixty-two people took part in the survey. Eczema control was described as a multifaceted construct involving changes in disease activity, the treatment and management of the condition, and psychological, social and physical functioning. Patient /carer measurement allows personal accounts and frequent measurement, whilst clinician measurement was deemed less subjective. The burden on patients/carers and issues for analysing and interpreting data should be considered. Conclusions This study formed the basis of judging the content validity and feasibility of measurement instruments/methods to assess control of eczema in clinical trials. This online approach to an international qualitative study is an example of how core outcome set developers with limited resources can engage with multiple stakeholder groups on an international basis to inform consensus meeting discussions

Micromegas for beam loss monitoring

International audienceThe early detection of beam losses and the alarm to the machine protection system in accelerators are crucial for the safe operation of the machine. In the low energy region of the hadron accelerators, only neutrons and photons are produced in the case of a beam loss. However, photons are also emitted by electrons at the RF cavities, becoming a natural background for losses identification. A new kind of beam loss monitors have been conceived to extend the sensitivity to the low energy region of the high intensity hadron accelerators. They are based on Micromegas detectors sensitive to fast neutrons. The appropriate configuration of the Micromegas operating conditions will allow a fast response, a sensitivity to small beam losses and a suppressed sensitivity to photons. In this paper the operation principle and the system developed for the European Spallation Source will be presented, with focus on the results obtained at different irradiation facilities. First time proof of operation in real conditions, with the detection of beam losses, will be also shown with measurements performed at LINAC4 (CERN)

What is long-term control of atopic eczema?: International qualitative studies and results of the HOME V consensus meeting O27

The Harmonising Outcome Measures for Eczema (HOME) initiative is a multidisciplinary, evidence-based international group developing a core outcome set for atopic eczema trials. HOME has previously recommended four essential domains to be measured; signs, symptoms, quality of life and long-term control, with Eczema Area and Severity Index (EASI) and Patient-Oriented Eczema Measure (POEM) as the instruments to measures signs and symptoms, respectively. The aim of the current study was to define the domain of long-term control, and achieve consensus on what instrument(s) should be used to measure it. Two qualitative studies were conducted by the long-term control working group: online focus groups involving patients and carers, and an online qualitative survey of the HOME membership. These were analysed thematically and combined to provide evidence on what long-term control of atopic eczema means to patients, carers and clinicians. A face-to-face consensus meeting (HOME V) was held on 12-14 June 2017 in Nantes, France, involving moderated small interactive groups and whole-group discussions with anonymous voting. The HOME roadmap and COSMIN and COMET guidelines on outcome measurement instrument selection were followed. Discussions and voting on the definition of long-term control and the face validity and feasibility of different ways of measuring long-term control were informed by these two international qualitative studies and other published evidence (systematic reviews and validation studies). Focus groups involving 99 patients and carers were conducted in the U.K., the U.S.A., the Netherlands, France, Sweden and Japan. The HOME survey included 62 responses, mainly clinicians, representing 16 countries. Patients, carers and clinicians considered long-term control to involve several related concepts: level of disease activity, impact on daily life, and treatment required (such as reducing treatment or using only maintenance treatment). Issues highlighted to consider when measuring long-term control included capturing the perspective of patients, carers and clini-cians, burden of data collection, interpretability and including an objective assessment. The consensus meeting in Nantes was attended by 81 participants from 13 countries. There was consensus (91% of participants voted in favour) that the long-term-control domain consists of repeated measures of the agreed core domains [clinician-reported signs, patient-reported symptoms (including itch intensity) and quality of life] plus a patient global assessment. Pending further discussions, the existing recommended instruments for signs and symptoms (EASI and POEM) should be used. HOME recommends that long-term control of atopic eczema is captured in trials by repeated measures of the existing core domains plus a patient global assessment. Further work is required on the timing of assessments and to determine the patient global assessment instrument