Content validity of the Recap of atopic eczema (RECAP) instrument in Dutch, English and German to measure eczema control in young people with atopic eczema: a cognitive interview study

Background: Recap of atopic eczema (RECAP) is a patient-reported outcome measure assessing eczema control. This instrument has been developed and validated in the UK. There are self-reported and proxy-reported versions in English, Dutch and German. However, it is unclear whether the self-reported version shows adequate content validity when completed by young people (8–16 years) in these languages. Objectives: To assess the content validity (comprehensibility, relevance and comprehensiveness) of the English, German and Dutch versions of the self-reported RECAP in young people with atopic eczema and to identify the most appropriate age cutoff for self-completion. Methods: We conducted 23 semistructured cognitive interviews with young people aged 8–16 years, using the ‘think-aloud’ method. In Germany and the Netherlands, participants were recruited in dermatology clinics and in the UK through social media and existing mailing lists. Interviews were audio recorded, transcribed verbatim and analysed in the three languages, using a problem-focused coding manual. Transcripts were coded by two independent reviewers in each country. Themes were translated into English and compared across the three countries. Results: Significant age-related comprehensibility issues with the last three items of the questionnaire occurred with young people aged 8–11 years, causing difficulties completing RECAP without help. However, older children had only minor problems and were able to complete the questionnaire by themselves. The self-reported version of RECAP has sufficient content validity for self-completion in young people aged 12 years and above. However, the German version with some translational adaptations may be appropriate for children from the age of 8 years. There may be some situations where the proxy version is needed for older children too. Conclusions: The self-reported version of RECAP is appropriate for use from the age of 12 years. The proxy version can be used in children younger than 12 years. Other measurement properties should be further investigated. What is already known about this topic? Recap of atopic eczema (RECAP) is an instrument recommended by the Harmonising Outcome Measures for Eczema initiative for the core outcome domain of long-term control of atopic eczema. Content validity of RECAP for self-completion by adults and of the proxy version has been assessed. What does this study add? In this study, content validity (comprehensibility, relevance and comprehensiveness) of the self-reported version of RECAP among young people (aged 8–16 years) with atopic eczema across the UK, Germany and the Netherlands is assessed. Based on these findings, key recommendations on how to measure eczema control in young people with atopic eczema are formulated. What are the clinical implications of this work? The Dutch, English and German self-completion versions of RECAP are recommended for use in adolescents from the age of 12 years. The proxy version could be used in children younger than 12 years or where children are cognitively or physically incapable of reporting their experience of eczema control. Caregivers should be encouraged to complete RECAP together with their child where possible

Care for a newborn child with giant congenital melanocytic nevus

We describe a newborn child with a giant congenital melanocytic naevus (GCMN). GCMN have a diameter of at least 40 centimeters (projected adult size), can have a very heterogeneous phenotype and are associated with malignant melanoma (MM) and neurocutaneous melanosis (NCM). By classification and by creating a risk profile, according to the new guideline ‘congenital melanocytic naevi’, parents were advised regarding further diagnostic evaluation, treatment and follow-up

Care for a newborn child with giant congenital melanocytic nevus

We describe a newborn child with a giant congenital melanocytic naevus (GCMN). GCMN have a diameter of at least 40 centimeters (projected adult size), can have a very heterogeneous phenotype and are associated with malignant melanoma (MM) and neurocutaneous melanosis (NCM). By classification and by creating a risk profile, according to the new guideline ‘congenital melanocytic naevi’, parents were advised regarding further diagnostic evaluation, treatment and follow-up

Anxiety, depression, and quality of life in children and adults with alopecia areata: A systematic review and meta-analysis

Introduction: Alopecia areata (AA) is a non-scarring hair loss condition, subclassified into AA, alopecia universalis, and alopecia totalis. There are indications that people with AA experience adverse psychosocial outcomes, but previous studies have not included a thorough meta-analysis and did not compare people with AA to people with other dermatological diagnoses. Therefore, the aim of this systematic review and meta-analysis was to update and expand previous systematic reviews, as well as describing and quantifying levels of anxiety, depression, and quality of life (QoL) in children and adults with AA. Methods: A search was conducted, yielding 1,249 unique records of which 93 were included. Results: Review results showed that people with AA have higher chances of being diagnosed with anxiety and/or depression and experience impaired QoL. Their psychosocial outcomes are often similar to other people with a dermatological condition. Meta-analytic results showed significantly more symptoms of anxiety and depression in adults with AA compared to healthy controls. Results also showed a moderate impact on QoL. These results further highlight that AA, despite causing little physical impairments, can have a significant amount on patients’ well-being. Discussion: Future studies should examine the influence of disease severity, disease duration, remission and relapse, and medication use to shed light on at-risk groups in need of referral to psychological care. Systematic review registration: [https://www.crd.york.ac.uk/prospero/], identifier [CRD42022323174]

Acceptability and feasibility of an online psychosocial intervention for Dutch adolescents with a visible difference: A mixed-methods study

Adolescents with a visible difference can experience difficult social situations, (e.g., people staring or making unwanted comments) and are at risk for mental health problems. Unfortunately, interventions for adolescents with a visible difference experiencing appearance-related distress are scarce and lack an evidence-base. This study tests the acceptability and feasibility of YP Face IT, an innovative online psychological intervention using social skills training and cognitive behavioural therapy, to Dutch adolescents. Adolescents aged 12–17 with a visible difference and access to an internet-enabled computer or tablet participated. They completed YP Face IT (eight sessions) and questionnaires were administered pre- and post-intervention. After completing YP Face IT, participants were interviewed to assess the acceptability and feasibility of YP Face IT and study procedures. Overall, 15 adolescents consented to participation, one person dropped out after one session. Most adolescents appreciated the intervention and all would recommend it to other adolescents experiencing appearance-related distress. Everyone reported learning experiences after following the sessions. Some struggled with motivation, but reminders by the website and research team were helpful. The Dutch YP Face IT intervention may be acceptable and the current study design is feasible to use. An RCT should be conducted to assess the effectiveness of the intervention

Proposal for a 6-step approach for differential diagnosis of neonatal erythroderma

The broad differential diagnosis of neonatal erythroderma often poses a diagnostic challenge. Mortality of neonatal erythroderma is high due to complications of the erythroderma itself and the occasionally severe and life-threatening underlying disease. Early correct recognition of the underlying cause leads to better treatment and prognosis. Currently, neonatal erythroderma is approached on a case-by-case basis. The purpose of this scoping review was to develop a diagnostic approach in neonatal erythroderma. After a systematic literature search in Embase (January 1990 – May 2020, 74 cases of neonatal erythroderma were identified, and 50+ diagnoses could be extracted. Main causes were the ichthyoses (40%) and primary immunodeficiencies (35%). Congenital erythroderma was present in 64% (47/74) of the cases, predominantly with congenital ichthyosis (11/11; 100%), Netherton syndrome (12/14, 86%) and Omenn syndrome (11/23, 48%). Time until diagnosis ranged from 102 days to 116 days for cases of non-congenital erythroderma and congenital erythroderma respectively. Among the 74 identified cases a total of 17 patients (23%) died within a mean of 158 days and were related to Omenn syndrome (35%), graft-versus-host disease (67%) and Netherton syndrome (18%). Disease history and physical examination are summarized in this paper. Age of onset and a collodion membrane can help to narrow the differential diagnoses. Investigations of blood, histology, hair analysis, genetic analysis and clinical imaging are summarized and discussed. A standard blood investigation is proposed, and the need for skin biopsies with lympho-epithelial Kazal-type related Inhibitor staining is highlighted. Overall, this review shows that diagnostic procedures narrow the differential diagnosis in neonatal erythroderma. A 6-step flowchart for the diagnostic approach for neonatal erythroderma during the first month of life is proposed. The approach was made with the support of expert leaders from international multidisciplinary collaborations in the European Reference Network Skin-subthematic group Ichthyosis