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      Developing a written action plan for children with eczema: a qualitative study

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          Abstract

          Background

          Eczema is common in children but adherence to treatments is poor. Written action plans (WAPs) have been shown to help in asthma but the potential value, format, and content of an eczema WAP is unknown.

          Aim

          To explore the potential role of an eczema WAP, and to design an eczema-specific WAP.

          Design and setting

          A qualitative study of parents of children with eczema, primary and secondary care health professionals, and other stakeholders.

          Method

          A total of 41 semi-structured one-to-one interviews and two focus groups were audiorecorded, transcribed, and analysed thematically.

          Results

          Reported challenges of managing eczema included: parental confusion about treatment application; lack of verbal and written advice from GPs; differing beliefs about the cause and management of eczema; re-prescribing of failed treatments; and parents feeling unsupported by their GP. An eczema WAP was viewed as an educational tool that could help address these problems. Participants expressed a preference for a WAP that gives clear, individualised guidance on treatment use, presented in a step-up/step-down approach. Participants also wanted more general information about eczema, its potential triggers, and how to manage problem symptoms.

          Conclusion

          An eczema WAP may help overcome some of the difficulties of managing eczema, and support families and clinicians in the management of the condition. Further evaluation is needed to determine if the eczema WAP the authors have developed is both acceptable and improves the outcomes for affected children and their families.

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          Most cited references19

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          Quality of life and childhood atopic dermatitis: the misery of living with childhood eczema.

          The misery of living with atopic eczema (syn. dermatitis, AD) cannot be overstated for it may have a profoundly negative effect on the health-related quality of life (HRQoL) of children and their family unit in many cases. As it is one of the commonest chronic relapsing childhood dermatosis (UK lifetime prevalence 16-20% by 20 years), with increasing worldwide prevalence, this has major social and financial implications for individuals, healthcare providers and society as a whole. This review explores the impact of AD on the lives of children and their family units and the use of some of the recently developed HRQoL measures, which have enabled investigation and categorisation of the physical, psychological and psycho-social effects of childhood eczema across all aspects of life. These effects include symptoms of itching and soreness, which cause sleeplessness in over 60%. Sleep deprivation leads to tiredness, mood changes and impaired psychosocial functioning of the child and family, particularly at school and work. Embarrassment, comments, teasing and bullying frequently cause social isolation and may lead to depression or school avoidance. The child's lifestyle is often limited, particularly in respect to clothing, holidays, staying with friends, owning pets, swimming or the ability to play or do sports. Restriction of normal family life, difficulties with complicated treatment regimes and increased work in caring for a child with eczema lead to parental exhaustion and feelings of hopelessness, guilt, anger and depression. The hidden costs involved in eczema management can be significant and have particular impact on lower income families. The impairment of quality of life caused by childhood eczema has been shown to be greater than or equal to other common childhood diseases such as asthma and diabetes, emphasising the importance of eczema as a major chronic childhood disease. HRQoL measures are proving to be valuable tools for use in the clinical setting, as outcome measures for pharmaceutical studies, for health economics and audit purposes. It is therefore recommended that in future, they should be used in conjunction with objective measures of severity, as part of the assessment process of a child with atopic eczema. Lack of information on eczema and treatments heightens parental anxiety. Education of all individuals involved in the care of children with eczema is fundamental in the management of AD and it is essential to provide simple clear, unambiguous information on treatment and disease management in order to reduce the negative impact on HRQoL.
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            Translating Patient-Oriented Eczema Measure (POEM) scores into clinical practice by suggesting severity strata derived using anchor-based methods

            Summary Background The Patient-Oriented Eczema Measure (POEM) is a validated, patient-derived assessment measure for monitoring atopic eczema severity, although further information on how different POEM scores translate into disease severity categories is needed for clinical trials, epidemiological research and audit. Objectives We sought to determine the relationship between Patient-Oriented Eczema Measure (POEM) scores (range 0–28) and two Global Questions (GQ1 and 2) concerning patients’/parents’ views of the overall severity of their/their child's atopic eczema, in order to stratify POEM scores into five severity bands. Methods POEM scores and GQs were completed by 300 patients from general practice and 700 patients from dermatology outpatient clinics, including 300 adults aged ≥ 16 years and 700 children. Results The mean POEM score was 13·6 (range 0–28), and standard deviation (SD) was 7·2. Mean GQ1/GQ2 scores were 2·1/2·1, respectively (range 0–4 and SD 1·1 for both). The mean, mode and median of the GQ scores for each POEM score were used to devise possible POEM bandings. The proposed banding for POEM scores are: 0–2 (clear/almost clear); 3–7 (mild); 8–16 (moderate); 17–24 (severe); 25–28 (very severe), kappa coefficient 0·46. Conclusions Severity banding of the POEM will allow more clinically meaningful use in everyday clinical practice and as a core outcome measure in future atopic eczema research.
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              Using thematic analysis in psychology

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                Author and article information

                Contributors
                Role: Research associate
                Role: Elizabeth Blackwell Institute clinical fellow
                Role: Research fellow
                Role: Senior lecturer
                Journal
                Br J Gen Pract
                Br J Gen Pract
                bjgp
                The British Journal of General Practice
                Royal College of General Practitioners
                0960-1643
                1478-5242
                February 2018
                05 December 2017
                05 December 2017
                : 68
                : 667
                : e81-e89
                Affiliations
                Centre for Academic Primary Care, School of Social and Community Medicine, University of Bristol, Bristol.
                Centre for Academic Primary Care, School of Social and Community Medicine, University of Bristol, Bristol.
                National Institute for Health Research Collaborations for Leadership in Applied Health Research and Care West (NIHR CLAHRC West), University Hospitals Bristol NHS Foundation Trust, Bristol, UK.
                Centre for Academic Primary Care, School of Social and Community Medicine, University of Bristol, Bristol.
                Author notes
                Address for correspondence Matthew Ridd, Centre for Academic Primary Care, Bristol Medical School, University of Bristol, Room 1.06, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK. Email: m.ridd@ 123456bristol.ac.uk
                Article
                10.3399/bjgp17X693617
                5774967
                29203680
                89d782ab-4c14-429a-9616-8dcc9c06363f
                © British Journal of General Practice 2018

                This article is Open Access: CC BY 4.0 licence ( http://creativecommons.org/licences/by/4.0/).

                History
                : 16 June 2017
                : 01 August 2017
                : 21 August 2017
                Categories
                Research

                atopic eczema/dermatitis,child,eczema,primary care,qualitative research,self-management,written action plans

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