Effectiveness of a nurse-led one-to-one education programme in addition to standard care in children with atopic dermatitis: a multicentre randomized control trial.

BACKGROUND: Therapeutic patient education (TPE) is recommended for children with atopic dermatitis (AD), but no consensus has been reached on the optimal tailoring of delivery. While repeated multidisciplinary group education sessions have shown effectiveness, the benefits of one-on-one educational interventions led by nurses for children with AD have not yet been assessed. OBJECTIVES: To assess the benefits of additional, well-structured, 1-h nurse-led individual TPE interventions in children with AD and their families compared with standard care alone. METHODS: Children with moderate-to-severe AD and their parents were randomized to receive a 1-h nurse-led education session in addition to standard care vs. standard care alone. The primary outcome was the area under the curve (AUC) of the SCORing of Atopic Dermatitis index (SCORAD) from baseline to week 24 (lower AUC values represent better long-term control of the disease). RESULTS: In our study, 176 patients were randomized across 11 centres, and 153 were included in the full analysis set. The mean (SD) age was 4.47 (4.57) years. By week 24, there were no significant differences in the AUCs of the SCORAD between the two groups (P = 0.3). Secondary outcomes including patient-reported severity and quality of life [AUCs of the patient-oriented SCORAD (PO-SCORAD) and Infants' Dermatitis Quality of Life Index (IDLQI), Children's Dermatitis Quality of Life Index (CDLQI) and Family Dermatitis Quality of Life Index (FDLQI)] were not significantly different between the two groups. The only significant change observed in the intervention group, when compared with the one receiving standard care, was a decrease in topical steroid phobia, as assessed by the topical corticosteroid phobia (TOPICOP) score. Prespecified subgroup analyses showed that disease severity in the intervention group was significantly lower throughout the study, compared with the standard-care group when participants had moderate AD at baseline (n = 47); while participants with severe AD at baseline (n = 106) did not show benefit from the intervention. Participants showed no additional benefit from the intervention regardless of age group. CONCLUSIONS: This study did not show any additional effectiveness, in long-term severity control, of a 1-h nurse-led TPE intervention in children with AD treated with standard care, compared with those treated with standard care alone. However, it should be noted that the intervention reduced the fear of using topical steroids and may be beneficial for patients in the subgroup with moderate AD.

EczemaPred: A computational framework for personalised prediction of eczema severity dynamics.

BACKGROUND: Atopic dermatitis (AD) is a chronic inflammatory skin disease leading to substantial quality of life impairment with heterogeneous treatment responses. People with AD would benefit from personalised treatment strategies, whose design requires predicting how AD severity evolves for each individual. OBJECTIVE: This study aims to develop a computational framework for personalised prediction of AD severity dynamics. METHODS: We introduced EczemaPred, a computational framework to predict patient-dependent dynamic evolution of AD severity using Bayesian state-space models that describe latent dynamics of AD severity items and how they are measured. We used EczemaPred to predict the dynamic evolution of validated patient-oriented scoring atopic dermatitis (PO-SCORAD) by combining predictions from the models for the nine severity items of PO-SCORAD (six intensity signs, extent of eczema, and two subjective symptoms). We validated this approach using longitudinal data from two independent studies: a published clinical study in which PO-SCORAD was measured twice weekly for 347 AD patients over 17 weeks, and another one in which PO-SCORAD was recorded daily by 16 AD patients for 12 weeks. RESULTS: EczemaPred achieved good performance for personalised predictions of PO-SCORAD and its severity items daily to weekly. EczemaPred outperformed standard time-series forecasting models such as a mixed effect autoregressive model. The uncertainty in predicting PO-SCORAD was mainly attributed to that in predicting intensity signs (75% of the overall uncertainty). CONCLUSIONS: EczemaPred serves as a computational framework to make a personalised prediction of AD severity dynamics relevant to clinical practice. EczemaPred is available as an R package.

Therapeutic education in atopic dermatitis: A position paper from the International Eczema Council.

BACKGROUND: Atopic dermatitis (AD) is a chronic, inflammatory skin disease that affects as many as 12.5% of children aged 0-17 years and 3% of the adult population. In the United States, 31.6 million children and adults are estimated to be living with AD. OBJECTIVE: Therapeutic patient education (TPE) has proven its value in the management of chronic diseases for which adherence to therapy is suboptimal. This article explores experts' opinions and treatment practices to determine if TPE is a recommended and effective method for treating AD. METHODS: Forty-two (51%) of 82 Councilors and Associates of the International Eczema Council (IEC), an international group with expertise in AD, responded to an electronic survey on TPE and AD. RESULTS: Most respondents (97.5%) agreed that TPE should play an important role in the management of AD. Many respondents (82.9%) believed that all patients with AD, regardless of disease severity, could benefit from TPE. LIMITATIONS: The International Eczema Council survey lacks specific information on AD severity. CONCLUSIONS: Publications have shown the positive effect of TPE on the course of the disease, the prevention of complications, and the autonomy and quality of patient life. Survey respondents agreed that TPE can improve the quality of patient care and patient satisfaction with care.

Conceptual Model to Illustrate the Symptom Experience and Humanistic Burden Associated With Atopic Dermatitis in Adults and Adolescents.

Atopic dermatitis (AD) is a pruritic or painful dermatologic disease characterized by xerosis and eczema lesions. The symptoms/signs of AD can significantly impact patients' health-related quality of life (HRQoL). This study aimed to qualitatively explore the adult and adolescent experience of AD. A targeted literature review and qualitative concept elicitation interviews with clinicians (n = 5), adult AD patients (n = 28), and adolescent AD patients (n = 20) were conducted to elicit AD signs/symptoms and HRQoL impacts experienced. Verbatim transcripts were analyzed using thematic analysis. Twenty-nine symptoms/signs of AD were reported, including pruritus, pain, erythema, and xerosis. Atopic dermatitis symptoms/signs were reported to substantially impact HRQoL. Scratching was reported to influence the experience of symptoms and HRQoL impacts. Four proximal impacts (including discomfort and sleep disturbance) were reported. Ten domains of distal impact were reported, including impacts on psychological and social functioning and activities of daily living. A conceptual model was developed to summarize these findings. This study highlights the range of symptoms and HRQoL impacts experienced by adults and adolescents with AD. To our knowledge, this study was first to explore the lived experience of AD in both adult and adolescent patients, providing valuable insight into the relatively unexplored adolescent experience of AD.

The emerging role of skin microbiome in atopic dermatitis and its clinical implication.

In recent years, the importance of the microbiome in maintaining healthy skin has become apparent. Both the classic microbiology cultivation techniques used since the early 1970s and the next-generation sequencing procedures refined in the past decade reveal the importance of skin microbiome in healthy and diseased skin. To strengthen and eventually restore a healthy microbiome in patients with dermatological conditions like atopic dermatitis (AD), it is important to consider the factors that influence the composition of the microbiome, such as skin pH and skin barrier integrity. Moreover, targeting the microbiome may support established treatment regimens in years to come. Initial studies have generated promising results, suggesting that AD treatments, including select emollients and topical corticosteroids, have a positive impact on the microbiome. This paper reviews different aspects of microbiome in AD and their implications in clinical practice.

When does atopic dermatitis warrant systemic therapy? Recommendations from an expert panel of the International Eczema Council.

BACKGROUND: Although most patients with atopic dermatitis (AD) are effectively managed with topical medication, a significant minority require systemic therapy. Guidelines for decision making about advancement to systemic therapy are lacking. OBJECTIVE: To guide those considering use of systemic therapy in AD and provide a framework for evaluation before making this therapeutic decision with the patient. METHODS: A subgroup of the International Eczema Council determined aspects to consider before prescribing systemic therapy. Topics were assigned to expert reviewers who performed a topic-specific literature review, referred to guidelines when available, and provided interpretation and expert opinion. RESULTS: We recommend a systematic and holistic approach to assess patients with severe signs and symptoms of AD and impact on quality of life before systemic therapy. Steps taken before commencing systemic therapy include considering alternate or concomitant diagnoses, avoiding trigger factors, optimizing topical therapy, ensuring adequate patient/caregiver education, treating coexistent infection, assessing the impact on quality of life, and considering phototherapy. LIMITATIONS: Our work is a consensus statement, not a systematic review. CONCLUSION: The decision to start systemic medication should include assessment of severity and quality of life while considering the individual's general health status, psychologic needs, and personal attitudes toward systemic therapies.

Recommendations from a European Roundtable Meeting on Best Practice Healthy Infant Skin Care.

BACKGROUND: European roundtable meeting recommendations on bathing and cleansing of infants were published in 2009; a second meeting was held to update and expand these recommendations in light of new evidence and the continued need to address uncertainty surrounding this aspect of routine care. METHODS: The previous roundtable recommendations concerning infant cleansing, bathing, and use of liquid cleansers were critically reviewed and updated and the quality of evidence was evaluated using the Grading of Recommendation Assessment, Development and Evaluation system. New recommendations were developed to provide guidance on diaper care and the use of emollients. A series of recommendations was formulated to characterize the attributes of ideal liquid cleansers, wipes, and emollients. RESULTS: Newborn bathing can be performed without harming the infant, provided basic safety procedures are followed. Water alone or appropriately designed liquid cleansers can be used during bathing without impairing the skin maturation process. The diaper area should be kept clean and dry; from birth, the diaper area may be gently cleansed with cotton balls/squares and water or by using appropriately designed wipes. Appropriately formulated emollients can be used to maintain and enhance skin barrier function. Appropriately formulated baby oils can be applied for physiologic (transitory) skin dryness and in small quantities to the bath. Baby products that are left on should be formulated to buffer and maintain babies' skin surface at approximately pH 5.5, and the formulations and their constituent ingredients should have undergone an extensive program of safety testing. Formulations should be effectively preserved; products containing harsh surfactants, such as sodium lauryl sulfate, should be avoided. CONCLUSION: Health care professionals can use these recommendations as the basis of their advice to parents.

Outpatient Home-based Wet Wrap Dressings with Topical Steroids with Children with Severe Recalcitrant Atopic Dermatitis: A Feasibility Pilot Study.

Wet wrapping (WW) appears to be effective in severe atopic dermatitis (AD) in children resistant to topical treatment. Seventeen children were included and were directed to use WW every night (≥6 hr) until lesions disappeared, followed by maintenance treatment of two to three treatments per week. The mean Scoring Atopic Dermatitis (SCORAD) score at baseline was 48.9. After 1 month of treatment the mean SCORAD score was 18.9, and efficacy was maintained after 3 months of treatment. The majority of patients were satisfied (91.7%) with the WW treatment; 92% considered it to be much more effective than the previous treatments received. WW was easy to perform for 75% of patients, 83% of patients stated that it was better tolerated, and 17% considered it to be tolerated equally to dermatologic corticosteroids without WW. The home WW program was continued on a maintenance basis for 75% of patients. This open-label study showed that this program was a feasible and well-tolerated alternative for the treatment of severe, refractory AD in children and adolescents.

Examining the frontal subcortical brain vulnerability hypothesis in children with neurofibromatosis type 1: Are T2-weighted hyperintensities related to executive dysfunction?

OBJECTIVE: It was hypothesized that neuropsychological impairments in children with neurofibromatosis type I (NF1) are associated with brain areas of increased T2-weighted signal intensity on MRI. Systematic and extensive examination of this hypothesis remains however scarce, particularly regarding executive dysfunction whereas hyperintensities are located preferentially in frontal-sub-cortical networks. In this study, we compared the executive functioning profile with characteristics of brain hyperintensities in children with NF1. METHOD: A sample of 36 school-age children with NF1 (7-12 years) underwent a detailed examination of executive function, including performance-based tests and child's behavior rating in daily life. Executive function measures were compared with the characteristics of the T2-weighted hyperintensities on parallel MRI scans. The presence, number, and size of hyperintensities in the whole brain were considered as well as their main cerebral locations. RESULTS: Executive dysfunction including traditional cognitive and ecological measures in children with NF1 is not significantly influenced by T2-weighted hyperintensities, in terms of presence or not, number, size, and location, whether in the whole brain or according to involved specific brain areas. CONCLUSION: T2-weighted hyperintensities, as they are currently measured, cannot be used as a strong indicator of executive dysfunction in children with NF1. Based on the available NF1 cognitive impairment pathogenesis models, a critical discussion on anatomical-functional relationships between hyperintensities and neuropsychological profile is proposed, especially the executive dysfunction.

Treatment refusal among patients with psoriasis.

BACKGROUND: Treatment refusal, which is defined as a patient actively refusing to take treatment despite physician recommendations, has never been evaluated in psoriasis. OBJECTIVE: To investigate refusal of topical treatments by patients living with psoriasis in France. METHODS: Using responses to an internet study, participants who refused topical treatment (n = 50) were compared to those who applied topical treatment (n = 205). Participants undergoing phototherapy, biotherapy, and oral treatment were excluded. Spearman rank correlations completed by Fisher's exact tests and Student's t-tests were performed. RESULTS: Comorbidities, localization of lesions, and symptoms associated with psoriasis were not significant predictors of treatment refusal. Compared to patients who accepted treatment, more patients who refused treatment believed that psoriasis is not manageable (80.0% versus 61.5%; p = 0.01), that psoriasis treatments never work (58.0% versus 27.5%; OR: 2.09 p < 0.0001), and that all creams have the same effects (54.0% versus 31.7%; OR: 1.7, p = 0.003). Among patients who reported seeking medical attention from physicians, more patients in the treatment refusal group reported some level of dissatisfaction with their relationship with their physician than in the treatment acceptance group. LIMITATIONS: The validity of the self-reported treatment refusal could not be evaluated. CONCLUSION: Treatment refusal is an important element to be taken into consideration in the management of psoriasis.

Analysis of correlations between patient-oriented SCORAD (PO-SCORAD) and other assessment scores of atopic dermatitis severity and quality of life.

OBJECTIVE: Self-assessment scores such as the Patient-Oriented Scoring of Atopic Dermatitis (PO-SCORAD) index being recommended by public health authorities for chronic disease management, we aimed at analysing correlations between PO-SCORAD and physician and patient assessment scores of atopic dermatitis (AD) severity and quality of life. METHODS: We perfomed an observational study conducted in 12 European countries in 4,222 atopic patients aged ≥1 month and prescribed Exomega® emollient cream. AD severity was measured by the SCORAD index, PO-SCORAD, Patient-Oriented Eczema Measure (POEM) and Self-Administered Eczema Area and Severity Index (SA-EASI) scales, and patient and family quality of life by the Dermatology Life Quality Index (DLQI) and Dermatitis Family Questionnaire Impact (DFQI) scales, respectively. Their correlations were analysed. RESULTS: PO-SCORAD was the only self-assessment score to be highly correlated with the SCORAD index and POEM (r ≥ 0.70). It was also the best correlated with the DLQI (r = 0.67) and DFQI (r = 0.56). After a 5-week treatment, SCORAD index and PO-SCORAD severity scores had decreased significantly by 60 and 56% (p < 0.0001), and quality of life had improved. CONCLUSION: PO-SCORAD is better correlated with quality of life scales than other self-assessment scores.

Is executive function specifically impaired in children with neurofibromatosis type 1? A neuropsychological investigation of cognitive flexibility.

Our study investigated spontaneous versus reactive cognitive flexibility in children with neurofibromatosis type 1 (NF1) and their comorbidity with attention-deficit hyperactivity disorder (ADHD). Thirty children with NF1 aged 7 to 12 years old were compared to 60 healthy controls matched by age, gender, and parental education. On the basis of Eslinger and Grattan's definition ( 1993 ), spontaneous shifting was assessed using fluency tests, whereas reactive flexibility was measured by a child adaptation of the Modified Card-Sorting Test and the Brixton Test. IQ and basic skills were taken into account as confounding variables that might influence executive measures. NF1 children performed below the level of healthy children on both reactive flexibility tasks, even when intelligence and basic skills were partialled out, but ADHD symptomatology was not found to adversely affect the performance of patients. Our findings support the hypothesis of a specific executive impairment in NF1, uncovering a dissociation between (impaired) reactive flexibility and (preserved) spontaneous shifting, with no impact of ADHD on executive performance.

TOPICOP©: a new scale evaluating topical corticosteroid phobia among atopic dermatitis outpatients and their parents.

BACKGROUND: The fear of using topical corticosteroids, usually called topical corticophobia, is a frequent concern for atopic dermatitis patients and/or their parents. Assessing patients' atopic dermatitis and their parents' topical corticosteroid phobia is an essential step to improving adherence to treatment. Because topical corticophobia appears to be a complex phenomenon, its evaluation by binary responses (yes/no) is too simplistic. Thus, a scale is needed, which is capable of identifying the subtleties of topical corticosteroid phobia. OBJECTIVES: To develop and validate a scale, TOPICOP©, measuring worries and beliefs about topical corticosteroids among atopic dermatitis outpatients and their parents. METHODS: An initial statistical validation of TOPICOP was carried out, collecting qualitative data about patients' topical corticophobia behaviors and beliefs using focus-group methodology. Then, 208 outpatients or their parents from five French centers completed a self-administered questionnaire built from focus-group results. The scale-development process comprised an explanatory principal component analysis, Cronbach's α-coefficients and structural equation modeling. RESULTS: The validated questionnaire comprised 12 items, covering two important dimensions relative to "worries" (6 items) and "beliefs" (6 items). Psychometric properties showed that items had very good communality (>0.60) within their own dimension. The final two-factor solution accounted for 47.3% of the variance. Cronbach's α-coefficients were, respectively, 0.79 and 0.78. Structural equation modeling strongly supported the possibility of calculating a global score. CONCLUSIONS: TOPICOP© is the first scale aimed at assessing topical corticophobia in adult patients and parents of children with eczema. TOPICOP® has excellent psychometric properties and should be easy to use in everyday clinical practice for clinicians and researchers. Further studies are needed to confirm our results and validate TOPICOP© in other cultures.

Therapeutic patient education in children with atopic dermatitis: position paper on objectives and recommendations.

Poor adherence is frequent in patients with atopic dermatitis (AD), leading to therapeutic failure. Therapeutic patient education (TPE) helps patients with chronic disease to acquire or maintain the skills they need to manage their chronic disease. After a review of the literature, a group of multispecialty physicians, nurses, psychologists, and patients worked together during two international workshops to develop common recommendations for TPE in AD. These recommendations were structured as answers to nine frequently asked questions about TPE in AD: What is TPE and what are its underlying principles? Why use TPE in the management of AD? Who should benefit from TPE in AD? How can TPE be organized for AD? What is the assessment process for TPE in AD? What is the evidence of the benefit of TPE in AD? Who are the people involved in TPE? How should TPE be funded in dermatology? What are the limits of the TPE process?