Title: Supporting self-care for eczema in the community
Funder: Department of Health and Social Care

Abstract: Aims Our aim is to improve the lives of people with eczema by developing and testing digital interventions (websites/apps) that will support self-care and address common barriers to eczema self-care, including concerns around topical corticosteroids. Research questions What are the self-care support needs of children with eczema and their parents/carers, teenagers and young adults with eczema? What are patients and parents/carers beliefs and concerns around the use of eczema treatments, and how do these views differ between different groups (by age or severity)? What is the current best evidence on the safety of topical corticosteroids? What is the clinical and cost-effectiveness of digital interventions (websites/apps) to support eczema self-care through behaviour change? How can we implement and integrate digital self-care interventions for eczema into routine care? Background and rationale Eczema is a common condition with significant impact on quality of life. The main cause of treatment failure is non-use of prescribed treatments for reasons including: treatments are time-consuming to apply; they may sting when first applied to inflamed skin; there are concerns about the safety of some treatments; and because patients often receive conflicting advice about how and when to use them. Concerns about topical corticosteroid phobia and addiction are prevalent and patients and parents/carers urgently need better information to interpret conflicting advice about how best to use eczema treatments. We will explore and seek to address these concerns within this programme of research, leading to the development and evaluation of digital interventions (websites/apps) that use behaviour change techniques to support behaviours relevant to eczema self-care. Research Plan We propose the following closely linked workstreams: Workstream 1 Understand facilitators and barriers to effective self-care amongst people with eczema (children with eczema and their families, teenagers and young adults managing their own eczema). Methods: Systematic review of qualitative literature and qualitative study with people with eczema and parents/carers. Workstream 2 Review the evidence base regarding safety of topical corticosteroids and develop knowledge tools aimed at patients, parents/carers and clinicians. Methods: Systematic reviews of RCTs and observational studies, combine with qualitative findings from workstream 1 to create knowledge tools. Workstream 3 Develop two digital interventions to support eczema self-care: one for parents/carers of children with eczema and one for teenagers and young adults managing their own eczema. Methods: Iterative development of interventions including think aloud interviews with users of prototype interventions. Workstream 4 Determine the clinical and cost-effectiveness of digital self-care interventions compared to standard clinical care. Methods: Two feasibility RCTs, two full-scale RCTs, and nested health economic evaluations of the digital self-care interventions for (1) parents/carers of children with eczema and (2) teenagers and young adults managing their own eczema, each compared to standard care. Workstream 5 Explore how to integrate interventions into clinical practice and to facilitate their uptake should they prove clinically and cost-effective. Methods: Process evaluation and implementation planning. Workstreams 1, 2 and 3 will be carried out concurrently, so that interventions are developed iteratively based on evidence from the systematic reviews and qualitative interviews prior to the RCTs in workstream 4. Workstream 5 will continue throughout the duration of the programme. Projected outputs and dissemination plan We will produce: A clear summary of current best evidence on the safety of topical corticosteroids plus knowledge tools to facilitate dissemination. Two new fully evaluated self-care support interventions for (1) parents/carers of children with eczema and (2) teenagers and young adults managing their own eczema. Plans for how to rapidly integrate these interventions into clinical practice, if effective. Dissemination pathways will include: close collaboration with relevant patient groups; annual and final reporting of findings to participants; stakeholder workshops, conference presentations and a planned series of publications in open access peer-reviewed journals; links with professional societies, guideline-developers and patient-information providers; engagement with Wessex CLAHRC, AHSN and NIHR dissemination centre; regular press releases; and engagement through social media. Benefits to patients and the NHS Addressing the self-care support needs of people with eczema and their families is likely to lead to substantial improvements in their quality of life and would be ready for rapid dissemination if shown to be effective. Improved self-care has the potential to benefit the NHS through a reduction in consultation rates for eczema, more appropriate prescribing, and reduced referrals to secondary care.

Lay abstract: Aim To improve the lives of people with eczema by developing and testing online resources designed to help them manage their eczema more effectively. Background Eczema is very common, affecting around one in five children and one in ten adults. Eczema leads to poor quality of life because of red or bleeding skin, itching and poor sleep. Most people with eczema benefit from two treatments: (1) moisturisers (emollients) for dry skin, which need to be applied daily; and (2) topical corticosteroids for inflamed skin. A common reason why eczema is not well-controlled is because treatments are not used regularly or in large enough quantities. There are many reasons why people may find it difficult to use eczema treatments: they can be time-consuming to apply; treatments may sting when first applied to inflamed skin; there are concerns about the safety of some treatments; and because patients often receive conflicting advice about how and when to use treatments. Design and methods We will develop online resources that address the needs of people with eczema in supporting their use of eczema treatments. The research will focus on meeting the needs of carers of children with eczema, and teenagers and young adults who manage their own eczema. We aim to promote effective self-care through improving knowledge and influencing beliefs and habits about use of treatments, using websites/apps that are easily accessible and tailored to individuals needs. We will also address the concerns of patients and healthcare professionals around the safety of topical corticosteroids. This research will include: Workstream 1: Explore the support needs and barriers to self-care of people with eczema by reviewing existing evidence, and conducting interviews with people with eczema. Workstream 2: Update and combine existing evidence around the safety of topical corticosteroids and develop targeted advice for patients and healthcare professionals. Workstreams 3 & 4: Develop eczema self-care support website/apps and test them to find out if they improve eczema. Workstream 5: Plan how to promote eczema self-care support websites/apps in everyday use (if effective). Patient and Public Involvement This research topic was prioritised by patients and health professionals in a James Lind Alliance Priority Setting Partnership. Patients and parents/carers have been, and will continue to be, central to the design, conduct and delivery of this work. We have two PPI co-applicants. Input from a broader range of patients with eczema, and training for the PPI co-applicants will be provided through the Centre of Evidence Based Dermatology s Patient Panel. Dissemination If self-care websites/apps are effective then health professionals will be encouraged to prescribe their use through approved websites, such as NHS Choices and the National Eczema Society. We will identify pathways for making self-care support part of routine NHS care.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: SKIN