Muller, Ingrid, Stuart, Beth, Sach, Tracey, Yardley, Lucy, Greenwell, Kate, Becque, Taeko, Leighton, Paul, Howells, Laura, Harvey, Jane, Hooper, Julie, Steele, Mary, Sivyer, Katy, Ghio, Daniela, Teasdale, Emma, Axon, Emma, Lax, Stephanie, Clarke, Holly, Onoja, Mary, Ahmed, Amina, Griffiths, Gareth, Kirk, Hayden, Langan, Sinead, Little, Paul, Lawton, Sandra, Ridd, Matthew, Roberts, Amanda, Williams, Hywel C., Thomas, Kim S. and Santer, Miriam (2025) Supporting self-care for eczema in the community: the Eczema Care Online research programme including two RCTs. Programme Grants for Applied Research, 13 (3), [3]. (doi:10.3310/FNHD8546).
Abstract
Background: eczema is a common condition with significant impact on quality of life. The main cause of treatment failure is non-use of prescribed treatments because 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 people often receive conflicting advice about how and when to use them.
Objectives: objectives of the present study are to: (1) explore the self-care support needs of children with eczema and their parents/carers, and young people with eczema, (2) review current best evidence about the safest and best ways to use topical corticosteroids for eczema, (3) develop theory-, evidenceand person-based online interventions to support eczema self-management in young people with eczema and parents/carers of children with eczema, (4) evaluate the clinical and cost-effectiveness of the interventions in two randomised controlled trials and (5) conduct a process evaluation and implementation planning. Design: Five qualitative studies, four systematic reviews (one qualitative) and two parallel randomised controlled trials with nested process evaluation and economic evaluation. Setting: Primary care.
Participants: children and young people aged 13-25 years with eczema, and parents/carers of children aged 0-12 years with eczema. Participants with very mild or inactive eczema were excluded. Interventions: We developed and evaluated two online behavioural interventions to support eczema management in: (1) young people and (2) parents/carers of children. Participants were not blinded to group allocation. Main outcome measures: Primary outcome measure in the randomised controlled trials was participant-reported eczema severity measured by the patient-oriented eczema measure over 24 weeks. Secondary outcomes included patient-oriented eczema measures over 52 weeks, quality of life and patient enablement.
Results: qualitative reviews and interviews provided in-depth understanding of the views, experiences and contexts within which young people and families manage eczema and identified barriers and facilitators to key behaviours. Systematic literature reviews on topical corticosteroid safety and effectiveness found no evidence of harm when topical corticosteroids were used intermittently to treat or prevent eczema flares. Our Cochrane review, which included 104 trials (8443 participants), found that potent and moderate topical corticosteroids are probably more effective than mild topical corticosteroids for treating moderate or severe eczema and that effectiveness is similar between once and twice daily use. Findings informed development of two online interventions, which were evaluated in two randomised controlled trials comparing intervention plus usual care to usual care only. Three hundred and forty parents/carers (169 usual care; 171 intervention) and 337 young people (169 usual care; 168 intervention) were randomised [mean baseline patientoriented eczema measure 12.8 (standard deviation 5.3) and 15.2 (standard deviation 5.4), respectively]. An intentiontotreat analysis approach to the analysis was taken. Follow-up rates were: 92.4% (314/340) parents/carers and 90.2% (304/337) young people at 24 weeks. Compared with usual care over 24 weeks, eczema severity (patient-oriented eczema measure) improved in the intervention groups: adjusted mean difference -1.5 (95% confidence interval -2.5 to -0.6) for parents/carers, and -1.9 (95% confidence interval -3.0 to -0.8) for young people. Effects were sustained for 52 weeks in both groups. Enablement showed an important difference favouring the intervention group in both trials [adjusted mean difference at 24 weeks -0.7 (95% confidence interval -1.0 to -0.4) for parents/carers and -0.9 (95% confidence interval -1.3 to -0.6) for young people]. No harms were identified in either group. Economic analysis found both interventions were low cost and cost-effective with almost all analyses (with the exception of the complete-case cost-utility analysis for the parent/carer trial) estimating the interventions to be dominant (cost saving and effective). Process evaluation demonstrated that both groups found the interventions usable, relatable and trustworthy, and perceived that they helped to manage their eczema. The interventions have been redeveloped into an English and Welsh product ready for dissemination and an implementation strategy has been developed. Limitations: This research was conducted during the COVID-19 pandemic. While this did not have a major impact on our research plans or delivery, it may have had impacts (positive and negative) on people’s eczema, their eczema management and access to health care.
Conclusions: Eczema Care Online is effective and acceptable to its target groups. Findings from this programme support the wide-scale implementation of the interventions, available at www.eczemacareonline.org.uk. Future work: Future work may explore how Eczema Care Online can be implemented in different settings and contexts and adapted for severe eczema. More research is also needed on the long-term safety of topical corticosteroids. Trial registration: This trial is registered as Current Controlled Trials ISRCTN79282252.
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