Development and initial testing of a new instrument to measure the experience of eczema control in adults and children: Recap of atopic eczema ( RECAP )

Abstract

Summary Background Eczema control has been identified as an important outcome by key stakeholders in eczema research (including patients, carers, healthcare professionals and researchers) but no validated instruments for the domain have been identified. Objectives To develop a measurement instrument to capture a patient's perspective of eczema control that is suitable for use in eczema clinical trials. Methods Best practice for the development of a patient‐reported outcome was followed. A mixed‐methods approach was used to develop and refine a conceptual framework, generate, refine and select items and to test the distribution and construct validity of the final scale. The mixed‐methods approach involved expert panel meetings (including patient representatives, healthcare professionals and methodologists), and data collection using a focus group, cognitive interviews and an online survey with people with eczema and caregivers. Multivariable linear regression was used in the item selection process. Results Fourteen expert panel members co‐produced the instrument, with input from people with eczema and caregivers via a focus group (n = 6), cognitive interviews (n = 13) and an online survey (n = 330). The resulting instrument, Recap of atopic eczema (RECAP), is a seven‐item questionnaire that captures eczema control via self or caregiver report. The development process aimed to ensure good content validity and feasibility. Initial testing suggested no floor or ceiling effects and good construct validity. Hypothesized correlation with the Patient‐Oriented Eczema Measure was confirmed [r(258) = 0·83, P < 0·001]. Conclusions RECAP has the potential to improve reporting of eczema control in research and clinical practice. Further exploration of measurement properties is required. Linked Comment: Pattinson and Bundy. Br J Dermatol 2020; 183:418–419. What's already known about this topic? Eczema control has been identified as an important outcome by key stakeholders in eczema research (including patients, carers, healthcare professionals and researchers). Qualitative studies suggest eczema control is a multifaceted and individual experience and no instrument has been identified that captures eczema control in this way. What does this study add? We have developed Recap of atopic eczema (RECAP), a seven‐item questionnaire to capture the experience of eczema control in all ages and eczema severities; there are two versions: a self‐reported version for adults and older children with eczema, and a caregiver‐reported version for younger children with eczema. Designed with input from people with eczema, caregivers and healthcare professionals to ensure good content validity. Initial testing of score distributions and construct validity suggests good measurement properties. What are the clinical implications of the work? The RECAP instrument is appropriate and feasible for measuring eczema control in clinical trials and may also be useful in routine practice.

The German RECAP questionnaire: linguistic validation and cognitive debriefing in German adults with self-reported atopic eczema and parents of affected children

“…No instrument measuring this construct in atopic eczema had been available. For this reason, a new outcome measurement instrument, named Recap of atopic eczema (RECAP), was developed and validated [5]. At the HOME VII meeting in Tokyo RECAP and another instrument, the Atopic Dermatitis Control Tool (ADCT) [10,13], were both voted as core outcome instruments for the long-term domain.…”

“…The patient and the caregiver version have been developed simultaneously to ensure that this instrument can be applied across all age groups. RECAP was developed in the UK, is free to access and use and can be completed quickly [5].…”

Assessing the validity, responsiveness and reliability of the Recap measure of eczema control

“…Initial validation work is encouraging, but the validity of Recap in different populations is uncertain, as is its reliability and responsiveness 2,3. We investigated the acceptability, construct validity, responsiveness and reliability of Recap.…”

Supporting self-care for eczema: protocol for two randomised controlled trials of ECO (Eczema Care Online) interventions for young people and parents/carers

“…Secondary outcomes include (1) difference in POEM scores 4-weekly over 52 weeks; (2) quality of life at 24 and 52 weeks, measured in ECO-YP, using the EQ-5D-5L 29 self-completed by the young person, and in ECO-PC by proxy using the Child Health Utility-Nine Dimensions (CHU-9D) 30 for children aged 2–12 years; (3) eczema control at 24 and 52 weeks, measured by RECAP (Recap for atopic eczema patients) 31 ; (4) itch intensity 32 at 24 and 52 weeks, measured as worst itch in the last 24 hours (not validated for proxy completion for children, and therefore used in ECO-YP only); (5) patient enablement at 24 and 52 weeks, the self-perceived ability to understand and cope with health issues, will be measured using the Patient Enablement Instrument (PEI) 33 ; (6) health service use and medication use, measured by medical notes review for the 3-month period prior to baseline and the whole 52-week trial period; (7) cost-effectiveness combining quality of life and health service use and medication use.…”