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 well-being. 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, the United States, 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.

The views of children and young people on the use of silk garments for the treatment of eczema: a nested qualitative study within the CLOTHing for the relief of Eczema Symptoms (CLOTHES) randomized controlled trial.

BACKGROUND: Many children suffer with skin diseases but to date most dermatological research has been done 'on' rather than 'with' children; in this study we actively sought the experiences of children and young people. Atopic eczema (AE) is a chronic, itchy, inflammatory skin condition that affects around 20% of children and can impact on the health and wellbeing of children and their families. The role of specialist clothing in the management of AE is poorly understood. OBJECTIVES: The aim of this study, which was nested in a randomized controlled trial, was to qualitatively examine child participants' experiences of using silk garments for the treatment of AE. METHODS: Eighteen children aged 5-15 years, who took part in the CLOTHing for the relief of Eczema Symptoms (CLOTHES) trial, participated in age-appropriate individual interviews or focus groups. RESULTS: Thematic analysis generated four themes directly related to the silk garments: (i) expectations of the garments; (ii) wearing the garments; (iii) asking if the garments helped; and (iv) thoughts about the garments. The conclusions from this nested qualitative study are that there was some limited improvement in eczema for some children but that the hoped-for 'miracle cure' did not transpire. A mixed picture of knowledge, beliefs and experiences of using the silk garments emerged. CONCLUSIONS: Engaging children in the evaluation of the garments provided first-hand nuanced insights that enhanced understanding of the CLOTHES study as a whole. This nested study demonstrates that children can and indeed want to be engaged in dermatological research in meaningful ways that add to our understanding of treatment options.

A randomized controlled trial to evaluate the effect of a new skincare regimen on skin barrier function in those with podoconiosis in Ethiopia.

BACKGROUND: Podoconiosis affects an estimated 3 million people in Ethiopia with a further 19 million at risk. Volcanic soil and pathogens enter skin breaches in the feet causing inflammation, lymphoedema and hyperkeratosis. There is no robust evidence on optimal podoconiosis skincare regimens to improve skin barrier function (SBF). OBJECTIVES: To evaluate the effectiveness of a new, low-cost, evidence-based intervention to improve SBF in the lower limbs of those with podoconiosis. METHODS: A randomized controlled trial (NCT02839772) was conducted over 3 months in two podoconiosis clinics (n = 193). The intervention comprised 2% (v/v) glycerine added to a reduced volume of soaking water. The control group received the current skincare regimen. Primary outcome measures were transepidermal water loss (TEWL) and stratum corneum hydration (SCH) at four specific sites on the lower limbs. RESULTS: Improvement in SBF was observed in both groups across all measurement sites and time points, although this was significantly greater in the experimental group. TEWL reduced in both groups at all sites. For example, on top of the foot the estimated group difference in TEWL at visit 4 was 1·751 [standard error (SE) = 0·0390] in favour of the experimental group [t = 3·15, degrees of freedom (df) = 189·58, P = 0·002, 95% confidence interval (CI) 0·066-2·85], indicating a greater reduction in TEWL in the experimental group. Similarly, at the same site the estimated group difference in SCH at visit 4 was -2·041 (SE = 0·572) in favour of the experimental group (t = -3·56, df = 186·74, P < 0·001, 95% CI -3·16 to -0·91), indicating a greater increase in SCH in the experimental group. There were also significantly greater reductions in odour, number of wounds and largest foot circumference in the experimental vs. the control group. CONCLUSIONS: The addition of 2% (v/v) glycerol to a reduced volume (83% reduction) of soaking water significantly improved SBF.

Treatment of severe, chronic hand eczema: results from a UK-wide survey.

Treatment of severe hand eczema (HE) that is resistant to topical potent corticosteroid treatment is challenging. In 2013, we surveyed 194 UK dermatologists to obtain information about their usual treatment pathways to inform the choice of the comparator in a trial of alitretinoin in severe HE (ALPHA trial); the results indicated that the treatment approaches favoured by UK dermatologists differ. Psoralen combined with ultraviolet A (PUVA) and alitretinoin were identified as the most frequent first-line treatment options for hyperkeratotic HE, whereas oral corticosteroids were identified as the most frequent first-line treatment for vesicular HE, followed by PUVA and alitretinoin. In terms of potential adverse effects of long-term or repeated use, oral steroids and ciclosporin A were reported to cause most concern. There is uncertainty about which treatment gives the best short and long-term outcomes, because of a lack of definitive randomised controlled trials evaluating the effectiveness of different treatment pathways in severe HE.

Parental self-efficacy and the management of childhood atopic eczema: development and testing of a new clinical outcome measure.

BACKGROUND: Effective parental management of childhood eczema requires education and support to reduce disease severity and improve the child's quality of life. Self-efficacy is a key factor influencing effective chronic disease management, yet there are no published scales to measure parental self-efficacy in managing childhood eczema. The Parental Self-Efficacy with Eczema Care Index (PASECI) was designed to measure parental self-efficacy in managing childhood eczema as a pre- and postintervention tool in the evaluation of a structured Eczema Education Programme (EEP). OBJECTIVES: To develop and test the validity, reliability and sensitivity of a new outcome measure (PASECI) designed to assess parental self-efficacy in managing their child's eczema to determine pre- vs. postintervention changes in educational intervention evaluation studies. METHODS: PASECI was developed from the literature, expert consultation and piloting of a 40-item prototype. The final 29-item scale is arranged in four subscales. Parents of children with eczema aged 0-16 years (n = 242) attending the EEP were assessed at 1 week pre-EEP and 4 weeks postintervention. Cronbach's α and factor analyses were undertaken. RESULTS: PASECI has face, content and construct validity. It is reliable, with high item internal consistency (α > 0·87 in all domains). Factor analysis revealed four viable domains. It was sensitive to change for postintervention measures using sign tests (P < 0·001). CONCLUSIONS: PASECI is a useful, valid, reliable and sensitive evaluative outcome measure of self-efficacy in parents managing childhood eczema.

The effects of hoarding disorder on families: an integrative review.

Compulsive hoarding affects approximately 2-5% of the adult population. Increasing recognition has led to its inclusion as a distinct condition in forthcoming revisions to the Diagnostic and Statistical Manual V. Hoarding behaviour can have a detrimental effect on the health and well-being of family members. A rigorous review of available evidence using a novel three-stage literature search was undertaken: (1) an extensive scoping review; (2) a traditional search of databases including Cumulative Index to Nursing and Allied Health Literature, Medical Literature Analysis and Retrieval System Online, and psycINFO using combinations of keywords; and (3) review of cited references and hand-searching of selected journals. Evidence was selected using predefined inclusion criteria. Papers included two surveys, one qualitative study and one case study. An integrative review methodology was used to synthesize the evidence presented. Analysis revealed three overriding themes: quality of life, shattered families and rallying around. These illuminated the experiences of family members. These papers revealed families under strain and often at breaking point but with the resolve to pull together if the right support is available. This review concludes that further research is needed to investigate the effects of hoarding on family members and how these may best be met.

A pilot randomized controlled trial to examine the feasibility and efficacy of an educational nursing intervention to improve self-management practices in patients with mild-moderate psoriasis.

BACKGROUND: Large numbers of people are expected to self-manage their skin condition, but limited attention has been given to studies of self-management in psoriasis, neither clearly highlighting the challenge nor seeking to develop interventions to support its effectiveness. OBJECTIVES: 1. To test the feasibility of a new educational intervention to enable people with psoriasis to self-manage more effectively an adequately powered multi-centred trial design through piloting. METHOD: Pilot randomized controlled trial with adults (n = 64) with mild-moderate psoriasis in Primary Care in the United Kingdom. Both groups continued with usual treatment. A theory-based educational intervention was designed. The primary outcome measure was the Dermatology Life Quality Index (DLQI). Secondary measures included the Psoriasis Area and Severity Index (PASI) and qualitative feedback from participants. Assessment of the feasibility of the intervention included recruitment and acceptability to participants. RESULTS: Delivery of the intervention was feasible and positively evaluated. Recruitment strategies and the intervention need minor modification. As a pilot study there was insufficient power to detect significant score changes. Sub group analysis of participants with a PASI or DLQI of >6 indicated a modest reduction in PASI in the intervention group which demonstrates a trend that may indicate that this intervention has potential value for people with moderate psoriasis when combined with qualitative data. CONCLUSION: This study highlights the feasibility of delivering a self-efficacy based educational intervention for people with mild-moderate psoriasis in primary care establishing the numbers and design required for an adequately powered multi-centred trial.

Self-management experiences in adults with mild-moderate psoriasis: an exploratory study and implications for improved support.

BACKGROUND: Psoriasis is a long-term condition affecting 2-3% of the population. The mainstay of treatment for mild-moderate disease is the regular application of topical medication by the individual. At present little is known about how people with psoriasis self-manage and how they may best be supported in this endeavour. OBJECTIVES: To explore how adults with mild-moderate psoriasis manage their condition and to identify strategies that can support people to self-manage effectively. METHODS: A qualitative investigation was carried out using six focus groups to collect data from purposively sampled participants managed in the community (n = 22). RESULTS: Thematic data analysis generated three categories that offer new insights into how people currently manage their condition, their low expectations of health services and how self-management may be better supported. People with mild-moderate psoriasis do not always achieve what they perceive to be optimal self-management. They often do not use topical therapy systematically and frequently abandon it if rapid improvements are not seen. Factors which participants identified as likely to improve self-management included the provision of individualized education directed towards improving effective adherence techniques by medical and nonmedical personnel who have practical experience in topical application of psoriatic therapies. CONCLUSIONS: People with mild-moderate psoriasis continue to find self-management problematic; however, they can identify strategies that could enable them to become more effective in self-managing. There is a need to incorporate these strategies in 'self-management plans' in order to support individuals to self-manage as effectively as possible to help improve their skin condition and quality of life.

Care of older people with dementia in an acute hospital setting.

AIM: To investigate the experiences of patients and nursing staff in relation to the care delivered to, and received by, older people with dementia in an acute hospital setting. METHOD: An ethnographic approach was used. Data were collected thorough observation and interviews involving patients and nursing staff. FINDINGS: Care for older people with dementia in acute hospital settings is not always satisfactory. Generally, people with dementia find the delivery of care and the experience of being in hospital distressing. Nurses strive to provide optimum care, but this is not always achievable. Sub-optimal care can be explained by considering the effect of empathy and Bourdieu's theory of practice. CONCLUSION: There is a need to improve current practice when caring for older people with dementia. Approaches to education and practice development need to engage nurses in both cognitive and affective domains, so that nurses gain knowledge and an understanding of patients' feelings and experiences.