Patient-Reported Burden of Severe Alopecia Areata: First Results from the Multinational Alopecia Areata Unmet Need Survey.

Purpose: Alopecia areata (AA) is an autoimmune disease characterized by hair loss that has significant psychosocial implications. This study aims to describe the patient-reported burden of severe AA, coping mechanism and information needs using data from the multinational AA Patient Satisfaction and Unmet Need Survey. Patients and Methods: Participants with current or previous ≥50% scalp hair loss (n = 747) were recruited from 11 countries and completed a web-based survey that assessed demographics, clinical characteristics, disease burden and psychosocial impact. Data were stratified according to sex, current age, disease duration and current severity of scalp hair loss. Results: The mean (SD) age of participants was 43.8 (7.1) years, 55.3% were women, and 63.5% reported AA symptoms within 6 months of diagnosis. Most participants had black or brown hair (88.4%), reported a disease duration of 2 years or more (75.6%) and had current scalp hair loss of ≥50% (87.4%). Severe hair loss also extended to eyebrow (46.9%), eyelash (48.7), beard (61.5%) and body hair (73.2%). Participants commonly reported comorbidities such as anxiety (26.1%), depression (18.1%) and sleep problems (28.1%). The Dermatology Life Quality Index revealed a severe impact on quality of life; 86.2% of participants scored >10. Mental health/mood was significantly affected; 55.8% of participants reported a substantial impact. Long-term effects included decreased self-esteem (32.9%), poor mental health (28.1%) and challenges in day-to-day activities (27.2%). Information needs were centered around treatment expectations, mental health, and available treatment options. More severe symptoms and a greater daily impact were reported by women and those with a longer disease duration. Conclusion: The study emphasizes the substantial burden, including impaired quality of life and psychological well-being, of severe AA on the lives of surveyed participants. The findings highlight the importance of comprehensive disease management strategies that address both physical and psychosocial aspects of AA.

Alopecia areata (AA) is a disease that results in hair loss and can greatly affect quality of life and well-being. The authors wanted to understand how this condition affects people's lives and what they need to cope with it. A survey was completed by adults from 11 different countries who had current or past severe AA. The participants were asked about their demographics, their experiences with the condition and how it impacted their daily lives. The results showed that AA has a severe impact on their quality of life, including their mental health and daily activities. Participants also experienced decreased self-esteem and faced challenges in their relationships and daily routines, and many reported feeling anxious, depressed, and having trouble sleeping. Participants found different ways to cope with their condition and expressed a need for realistic expectations about treatment results, information about mental health, and treatment options. The study also found that women and those with a longer duration of AA tended to have more severe symptoms and the impact on their lives was greater. Overall, this study shows that current or previous episodes of severe AA had a significant impact on people's lives, including their mental health and daily activities. It emphasizes the need for information about the condition and treatment options with realistic expectations. The findings help to better understand the experiences of people with AA and may aid the provision of appropriate support and information.

Real-World Treatment Patterns and Treatment Benefits among Adult Patients with Atopic Dermatitis: Results from the Atopic Dermatitis Patient Satisfaction and Unmet Need Survey.

Atopic dermatitis is a chronic inflammatory skin disorder associated with a heterogeneous presentation and considerable disease burden. Exploring atopic dermatitis treatment patterns and patient benefits could improve disease management and patients' quality of life. This study aimed to describe current and previous atopic dermatitis treatment patterns and patient benefits from those treatments to inform disease management. Data were collected in 10 countries. Adults (n = 1,988) with confirmed moderate-to-severe atopic dermatitis completed a web-based cross-sectional survey. Most patients (86.6%) had body surface area involvement <10%, and therapies used were topical (69.7%), systemic (28.1%), and biologics (2.3%). Most flares were managed by topical monotherapies (73.4%), even in patients with body surface area involvement ≥10%. Treatment expectations were met only partially, or not at all, in 75% of patients. Those with body surface area involvement ≥10% reported lower treatment satisfaction. Overall, this study highlights the unmet medical needs in atopic dermatitis management.

Impact of clinical and demographic characteristics on patient preferences for psoriasis treatment features: Results from a discrete-choice experiment in a multicountry study.

OBJECTIVES: This study aimed to elicit preferences for psoriasis treatment features and to test for preference heterogeneity across groups of respondents. MATERIALS AND METHODS: A discrete-choice experiment was employed to elicit preferences of patients with plaque psoriasis in multiple countries. The survey instrument included a series of choice questions between three hypothetical treatments, each characterized by varying levels of six attributes (namely, lesion reduction, risk of impairing side effects, time to reach results, mode and frequency of administration, itching reduction, and side effects). Random parameters logit was used to model the data. Results were compared across a total of 18 subgroup sets. RESULTS: The data analysis from 1,123 respondents showed that, on average, respondents receive more utility gain from higher levels of lesion reduction and lower risks of impairing side effects than changes in other attributes included in the study. Systematic differences were detected for 13 sets; the most pronounced differences were observed based on disease severity, nail psoriasis, biologic experience, and quality-of-life scores. CONCLUSION: These many sources of preference heterogeneity identified by our analysis suggest that to improve patient satisfaction and, probably, adherence and persistence, clinicians should discuss options with patients when prescribing their treatment.

Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare Professionals.

INTRODUCTION: This survey assessed the impact of rheumatoid arthritis (RA) on the lives of patients based on the perceptions of both patients and healthcare professionals (HCPs). METHODS: This is a cross-sectional survey of patients with RA. Data were collected from patients and HCPs who manage RA using a structured, closed-ended questionnaire in their local language. Respondents for the survey were recruited from survey panels of verified unique responses. The survey focused on the impact of disease on four domains: daily activities, relationships, work and aspirations. RESULTS: Overall, 1231 adult patients with RA and 270 rheumatologists or other HCPs were surveyed between November 2016 and February 2017. Almost one in three patients believed that the impact of RA is not well understood by people without the disease. Fifty-eight percent [95% confidence interval (CI) 55-61%] of patients felt frustrated when they were unable to undertake or complete daily activities because of their disease. Fifty-seven percent (95% CI 54-60%) of patients wished to be able to accept their life with RA. Forty-three percent (95% CI 40-46%) of patients hoped that the physical impact of RA will be better understood in future. Forty percent (95% CI 37-43%) of patients were forced to take long-term leave/retirement or experienced slow career progression since being diagnosed with RA. Twenty-three percent (95% CI 21-25%) of patients had difficulties in taking care of personal grooming, whereas 8% (95% CI 6-10%) of patients reported that RA ruined their life. Similar responses were observed among HCPs. CONCLUSION: Patients and HCPs feel that the physical and emotional impact of RA is not well understood by people without the disease. In RA treatment decisions, patients' personal goals and patient-reported outcomes should be taken into consideration along with clinical targets. FUNDING: Eli Lilly and Company (Indianapolis, IN, USA).

Depression and quality of life in older adults: Mediation effect of sleep quality.

Background/Objective: Sleep insufficiency, which affects more than 45% of the world's population, has a great importance when considering older adults. Thus, this research tested a mediation hypothesis, through a path analysis, which explains how depression relates to the quality of life considering the effects of sleep quality in older adults. Method: A sample of 187 community-dwelling Portuguese older adults answered questionnaires about sociodemographic status (age, gender, highest level of education completed, family status, sports activities, health, and retirement status), quality of life, sleep quality, and depression. Descriptive and path analysis statistics were performed considering the results of the normality test. Results: The sample has health characteristics and presents adequate sleep duration. Sleep quality acted as a mediator between depression and the quality of life in older adults, considering the variation of gender and health. This suggests that it is important to establish self-care practices, namely sleep quality, to intervene in the ageing process. Conclusions: It is important to consider sleep quality associated with depression for older adults and to test interventions to minimize health impacts. Also, more researches are needed about the primary prevention in sleep quality relating to depression.

Antecedentes/Objetivo: La insuficiencia del sueño, que afecta a más del 45% de la población mundial, tiene una gran importancia al considerar los adultos mayores. Por lo tanto, esta investigación probó una hipótesis de mediación, que explica cómo la depresión se relaciona con la calidad de vida, considerando los efectos de la calidad del sueño en adultos mayores. Método: Una muestra de 187 ancianos portugueses residentes en la comunidad respondió a cuestionarios sobre el estado sociodemográfico (edad, sexo, nivel educativo más alto, estado familiar, actividades deportivas, estado de salud y jubilación), calidad de vida, calidad del sueño y depresión. Se realizaron estadísticas descriptivos y de análisis de trayectoria, considerando los resultados de la prueba de normalidad. Resultados: La muestra presenta características de salud y una duración adecuada del sueño. La calidad del sueño actuó como mediador entre la depresión y la calidad de vida en adultos mayores, considerando la variación de género y salud. Conclusiones: Es importante considerar la calidad del sueño asociada con la depresión para adultos mayores y realizar intervenciones para minimizar los impactos en la salud. Además, se necesitan más investigaciones sobre la prevención primaria de la calidad del sueño relacionada con la depresión.

Depression and quality of life in older adults: Mediation effect of sleep quality / Depresión y calidad de vida en adultos mayores: mediación de la calidad del sueño

Background/Objective: Sleep insufficiency, which affects more than 45% of the world's population, has a great importance when considering older adults. Thus, this research tested a mediation hypothesis, through a path analysis, which explains how depression relates to the quality of life considering the effects of sleep quality in older adults. Method: A sample of 187 community-dwelling Portuguese older adults answered questionnaires about sociodemographic status (age, gender, highest level of education completed, family status, sports activities, health, and retirement status), quality of life, sleep quality, and depression. Descriptive and path analysis statistics were performed considering the results of the normality test. Results: The sample has health characteristics and presents adequate sleep duration. Sleep quality acted as a mediator between depression and the quality of life in older adults, considering the variation of gender and health. This suggests that it is important to establish self-care practices, namely sleep quality, to intervene in the ageing process. Conclusions: It is important to consider sleep quality associated with depression for older adults and to test interventions to minimize health impacts. Also, more researches are needed about the primary prevention in sleep quality relating to depression (AU)

Antecedentes/Objetivo: La insuficiencia del sueño, que afecta a más del 45% de la población mundial, tiene una gran importancia al considerar los adultos mayores. Por lo tanto, esta investigación probó una hipótesis de mediación, que explica cómo la depresión se relaciona con la calidad de vida, considerando los efectos de la calidad del sueño en adultos mayores. Método: Una muestra de 187 ancianos portugueses residentes en la comunidad respondió a cuestionarios sobre el estado sociodemográfico (edad, sexo, nivel educativo más alto, estado familiar, actividades deportivas, estado de salud y jubilación), calidad de vida, calidad del sueño y depresión. Se realizaron estadísticas descriptivos y de análisis de trayectoria, considerando los resultados de la prueba de normalidad. Resultados: La muestra presenta características de salud y una duración adecuada del sueño. La calidad del sueño actuó como mediador entre la depresión y la calidad de vida en adultos mayores, considerando la variación de género y salud. Conclusiones: Es importante considerar la calidad del sueño asociada con la depresión para adultos mayores y realizar intervenciones para minimizar los impactos en la salud. Además, se necesitan más investigaciones sobre la prevención primaria de la calidad del sueño relacionada con la depresión (AU)

Deslocamentos teóricos da noção da "relação com o saber" e suas possibilidades para a análise psicopedagógica das aprendizagens escolares / Theoretical displacement of the notion of 'relationship to knowledge' and its possibilities for psycho-pedagogy analysis of school learning

Neste artigo, temos descrito distintas deslocações que se têm suscitado com a noção de relação com o saber ao seu uso efetivo em trabalho de pesquisa empírica e teórica de diferentes áreas disciplinares. Existem na comunidade acadêmica internacional, muitas iniciativas que tentam abordar, desde diferentes disciplinas, alguns problemas da transmissão de saberes e de sua apropriação, usando o poder heurístico da noção de "relação com o saber". Essas iniciativas incluem estudos teóricos e empíricos que aludem à relação com o saber dos sujeitos escolares das disciplinas escolares: docentes e alunos que se matriculam principalmente em duas grandes escolas: a psicanalítica do Centre de Recherche Education et Formation (CREF), da Universidade Paris X-Nanterre, criado por Jacky Beillerot e continuado por Nicole Mosconi e Claudine Blanchard-Laville; e a sociológica, do Grupo "Educação, socialização e coletividades locais" (ESCOL), formado no ano 1987 no Departamento de Ciências da Educação da Universidade de Paris VIII, Saint Denis, sob a direção de Bernard Charlot. Registram-se esforços por precisar teoricamente essa noção "inexata, de contornos e condição incerta". As pesquisas concordam que a relação de um sujeito com o saber constitui em dois processos vitais, um primário vinculado às primeiras relações que a criança desenvolve no âmbito familiar, que imprime certas características a tal relação; são marcas - mais ou menos facilitadoras - que os processos de subjetivação deixam na forma em que o sujeito se relaciona com o saber. E um processo secundário, vinculado ao trânsito por instituições exogâmicas - as do sistema educativo, as da inserção laboral - que com os seus próprios reservatórios de significados, lógicas de funcionamento e demandas para o sujeito, pareceriam ser oportunidade ou ocasião para comover, modificar ou fortalecer essa relação. As pesquisas diferem nas dimensões de análise nas que enfatizarão: os estudos que fazem parte da ESCOL o farão nos sentidos que os sujeitos constróem em torno do saber, a sua relação com eles mesmo, e por extensão, com a escola, em geral. Os estudos fazem parte dos múltiplos desenvolvimentos do CREF, enquanto isso darão prioridade a certos fenômenos de ordem inconsciente: fenômenos de transferência, fantasmagóricos e até pulsionais. O que é evidente é, em suma, a persistência de uma problemática teórico-epistemológica: essa é a maneira como o sujeito é conceituado, o saber e a relação que o sintagma estabelece entre os dois.(AU)

This review article discusses the theoretical displacement of the notion of 'relationship to knowledge' in its effective use in empirical and theoretical research from different disciplinary fields. In the international academic community there are initiatives from different disciplines that analyzed some problems of knowledge transmission using the heuristic power of the concept of "relationship to knowledge". These initiatives include theoretical and empirical studies about teacher and students' relationship with knowledge. These studies are enrolled mainly in two major schools: psychoanalytic of the Centre de Recherche et Formation Education (CREF), University Paris X -Nanterre, created by Jacky Beillerot and continued by Nicole Mosconi and Claudine Blanchard - Laville; and the sociological, the Group "Education, socialization and local communities" (ESCOL) formed in 1987 in the Department of Science Education, University of Paris VIII, Saint Denis, under the direction of Bernard Charlot. Efforts to theoretically clarify this "vague, uncertain contours and condition" notion are recorded. Researchers agree that the relationship of a subject with knowledge is constituted in two vital processes, a primary one, linked to the first relationship the child develops in the family. And a secondary process, linked to transit through outbreeding institutions with its own reservoir of meanings, operating logics and demands at the subject, appear to be chance or opportunity to move, modify or strengthen this relationship. The investigations differ in the dimensions of analysis that emphasize: the studies that are part of the ESCOL will do in the sense that subjects built around knowledge, and by extension, school, in general. The studies are part of the development of CREF, meanwhile, will give priority to certain phenomena of unconscious order: transference phenomena, phantasmic and even instinctual. What is apparent is the persistence of a theoretical ...(AU)

Deslocamentos teóricos da noção da "relação com o saber" e suas possibilidades para a análise psicopedagógica das aprendizagens escolares / Theoretical displacement of the notion of 'relationship to knowledge' and its possibilities for psycho-pedagogy analysis of school learning

Neste artigo, temos descrito distintas deslocações que se têm suscitado com a noção de relação com o saber ao seu uso efetivo em trabalho de pesquisa empírica e teórica de diferentes áreas disciplinares. Existem na comunidade acadêmica internacional, muitas iniciativas que tentam abordar, desde diferentes disciplinas, alguns problemas da transmissão de saberes e de sua apropriação, usando o poder heurístico da noção de "relação com o saber". Essas iniciativas incluem estudos teóricos e empíricos que aludem à relação com o saber dos sujeitos escolares das disciplinas escolares: docentes e alunos que se matriculam principalmente em duas grandes escolas: a psicanalítica do Centre de Recherche Education et Formation (CREF), da Universidade Paris X-Nanterre, criado por Jacky Beillerot e continuado por Nicole Mosconi e Claudine Blanchard-Laville; e a sociológica, do Grupo "Educação, socialização e coletividades locais" (ESCOL), formado no ano 1987 no Departamento de Ciências da Educação da Universidade de Paris VIII, Saint Denis, sob a direção de Bernard Charlot. Registram-se esforços por precisar teoricamente essa noção "inexata, de contornos e condição incerta". As pesquisas concordam que a relação de um sujeito com o saber constitui em dois processos vitais, um primário vinculado às primeiras relações que a criança desenvolve no âmbito familiar, que imprime certas características a tal relação; são marcas - mais ou menos facilitadoras - que os processos de subjetivação deixam na forma em que o sujeito se relaciona com o saber. E um processo secundário, vinculado ao trânsito por instituições exogâmicas - as do sistema educativo, as da inserção laboral - que com os seus próprios reservatórios de significados, lógicas de funcionamento e demandas para o sujeito, pareceriam ser oportunidade ou ocasião para comover, modificar ou fortalecer essa relação...

This review article discusses the theoretical displacement of the notion of 'relationship to knowledge' in its effective use in empirical and theoretical research from different disciplinary fields. In the international academic community there are initiatives from different disciplines that analyzed some problems of knowledge transmission using the heuristic power of the concept of "relationship to knowledge". These initiatives include theoretical and empirical studies about teacher and students' relationship with knowledge. These studies are enrolled mainly in two major schools: psychoanalytic of the Centre de Recherche et Formation Education (CREF), University Paris X -Nanterre, created by Jacky Beillerot and continued by Nicole Mosconi and Claudine Blanchard - Laville; and the sociological, the Group "Education, socialization and local communities" (ESCOL) formed in 1987 in the Department of Science Education, University of Paris VIII, Saint Denis, under the direction of Bernard Charlot. Efforts to theoretically clarify this "vague, uncertain contours and condition" notion are recorded. Researchers agree that the relationship of a subject with knowledge is constituted in two vital processes, a primary one, linked to the first relationship the child develops in the family. And a secondary process, linked to transit through outbreeding institutions with its own reservoir of meanings, operating logics and demands at the subject, appear to be chance or opportunity to move, modify or strengthen this relationship. The investigations differ in the dimensions of analysis that emphasize: the studies that are part of the ESCOL will do in the sense that subjects built around knowledge, and by extension, school, in general. The studies are part of the development of CREF, meanwhile, will give priority to certain phenomena of unconscious order: transference phenomena, phantasmic and even instinctual. What is apparent is the persistence of a theoretical...