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BACKGROUND: The term 'flare' is used across multiple diseases, including atopic dermatitis (AD), to describe increased disease activity. While several definitions of an AD flare have been proposed, no single definition of AD flare is widely accepted and it is unclear what the term 'AD flare' means from the patient perspective. OBJECTIVES: To understand AD flares from the adult patient perspective and to explore how adults with AD define an AD flare. METHODS: Participants were adults with AD recruited from the National Eczema Association Ambassadors programme, a volunteer patient-engagement programme. They participated in online focus groups to discuss how they describe AD flares from their perspective, how they define its start and stop, and how they relate to existing definitions of flare. Using a grounded theory approach, transcripts were analysed and coded using an iterative process to identify concepts to support a patient-centred conceptual framework of 'flare'. RESULTS: Six 90-min focus groups of 3-8 participants each were conducted with 29 US adults (≥ 18â years of age) with AD who had at least one self-reported AD flare in the past year. When participants were presented with examples of previously published definitions of AD flare, participants found them problematic and unrelatable. Specifically, they felt that flare is hard to quantify or put on a numerical scale, definitions cannot solely be about skin symptoms and clinical verbiage does not resonate with patients' lived experiences. Concepts identified by patients as important to a definition of flare were changes from patient's baseline/patient's normal, mental/emotional/social consequences, physical changes in skin, attention needed/all-consuming focus, itch-scratch-burn cycle and control/loss of control/quality of life. Figuring out the trigger that initiated a flare was an underlying concept of the experience of flare but was not considered a contributor to the definition. CONCLUSIONS: The results highlight the complexity and diversity of AD flare experiences from the adult patient perspective. Previously published definitions of AD flares did not resonate with patients, suggesting a need for a patient-centred flare definition to support care conversations and AD management.
Atopic dermatitis (AD) is a skin disease that affects 10% of children and 7% of adults living in the USA. People living with AD experience inflamed, itchy skin with periods of worsening called 'flares'. To date, there have been many proposed definitions of flare; however, no definition describes the significant features of a flare as identified by those who have experienced flares first hand. The goal of this study was to create a new patient-informed definition of an AD flare. This patient-centred study was done by an international team of authors from the USA and Canada, including two authors from a patient advocacy organization and a person living with AD. We virtually interviewed groups of US adults with AD to discuss what flares meant to them. Themes that people living with AD felt were important to a flare definition included experiencing a change from a subjective baseline, physical changes of the skin, increased demand/focus on management of the skin, loss of control/quality of life, undergoing psychological/social consequences and the itchscratch cycle. Flares were also associated with trying to figure out the cause of the flare. People with AD felt existing flare definitions did not reflect their experiences due to difficulty applying a numerical scale to their multidimensional experiences, definitions being exclusively about skin, and wording being too clinical and not relevant to their lived experience. The results of our study reveal important concepts of an AD flare from the patient perspective and highlight the diversity of features that define a flare. This patient-informed definition of flare can assist healthcare professionals in their delivery of care.
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Dermatite Atópica , Grupos Focais , Pesquisa Qualitativa , Humanos , Dermatite Atópica/diagnóstico , Dermatite Atópica/psicologia , Adulto , Feminino , Masculino , Pessoa de Meia-Idade , Exacerbação dos Sintomas , Assistência Centrada no Paciente , Adulto Jovem , Terminologia como Assunto , IdosoRESUMO
BACKGROUND: Guidance addressing atopic dermatitis (AD) management, last issued in 2012 by the American Academy of Allergy, Asthma and Immunology/American College of Allergy, Asthma and Immunology Joint Task Force, requires updating as a result of new treatments and improved guideline and evidence synthesis methodology. OBJECTIVE: To produce evidence-based guidelines that support patients, clinicians, and other decision-makers in the optimal treatment of AD. METHODS: A multidisciplinary guideline panel consisting of patients and caregivers, AD experts (dermatology and allergy/immunology), primary care practitioners (family medicine, pediatrics, internal medicine), and allied health professionals (psychology, pharmacy, nursing) convened, prioritized equity, diversity, and inclusiveness, and implemented management strategies to minimize influence of conflicts of interest. The Evidence in Allergy Group supported guideline development by performing systematic evidence reviews, facilitating guideline processes, and holding focus groups with patient and family partners. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach informed rating the certainty of evidence and strength of recommendations. Evidence-to-decision frameworks, subjected to public comment, translated evidence to recommendations using trustworthy guideline principles. RESULTS: The panel agreed on 25 recommendations to gain and maintain control of AD for patients with mild, moderate, and severe AD. The eAppendix provides practical information and implementation considerations in 1-2 page patient-friendly handouts. CONCLUSION: These evidence-based recommendations address optimal use of (1) topical treatments (barrier moisturization devices, corticosteroids, calcineurin inhibitors, PDE4 inhibitors [crisaborole], topical JAK inhibitors, occlusive [wet wrap] therapy, adjunctive antimicrobials, application frequency, maintenance therapy), (2) dilute bleach baths, (3) dietary avoidance/elimination, (4) allergen immunotherapy, and (5) systemic treatments (biologics/monoclonal antibodies, small molecule immunosuppressants [cyclosporine, methotrexate, azathioprine, mycophenolate, JAK inhibitors], and systemic corticosteroids) and UV phototherapy (light therapy).
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Asma , Dermatite Atópica , Eczema , Hipersensibilidade , Inibidores de Janus Quinases , Criança , Humanos , Estados Unidos , Dermatite Atópica/tratamento farmacológico , National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division , Corticosteroides , ImunossupressoresRESUMO
Atopic dermatitis (AD) and food allergies are more prevalent and more severe in people with skin of color than White individuals. The American College of Allergy, Asthma, and Immunology (ACAAI) sought to understand the effects of racial disparities among patients with skin of color with AD and food allergies. The ACAAI surveyed its members (N = 200 completed), conducted interviews with health care providers and advocacy leaders, and hosted a roundtable to explore the challenges of diagnosis and management of AD and food allergies in people with skin of color and to discuss potential solutions. Most of the survey respondents (68%) agreed that racial disparities make it difficult for people with skin of color to receive adequate treatment for AD and food allergies. The interviews and roundtable identified access to care, burden of costs, policies and infrastructure that limit access to safe foods and patient education, and inadequate research involving people with skin of color as obstacles to care. Proposed solutions included identifying ways to recruit more people with skin of color into clinical trials and medical school, educating health care providers about diagnosis and treating AD and food allergy in people with skin of color, improving access to safe foods, creating and disseminating culturally appropriate materials for patients, and working toward longer appointment times for patients who need them. Challenges in AD and food allergy in persons with skin of color were identified by the ACAAI members. Solutions to these challenges were proposed to inspire actions to mitigate racial disparities in AD and food allergy.
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Asma , Dermatite Atópica , Hipersensibilidade Alimentar , Humanos , Estados Unidos , Pele , Testes CutâneosRESUMO
Methotrexate (MTX) is a readily accessible drug, first used in 1948 and employed for a wide variety of indications since then. However, despite widespread off-label use, FDA labeling does not include approved indications for the use of MTX for many inflammatory skin diseases in pediatric patients, including morphea, psoriasis, atopic dermatitis, and alopecia areata, among others. Without published treatment guidelines, some clinicians may be hesitant to use MTX off-label, or uncomfortable prescribing MTX in this population. To address this unmet need, an expert consensus committee was convened to develop evidence- and consensus-based guidelines for use of MTX to treat pediatric inflammatory skin disease. Clinicians with experience and expertise in clinical research, drug development, and treating inflammatory skin disease in pediatric patients with MTX were recruited. Five committees were created based on major topic areas: (1) indications and contraindications, (2) dosing, (3) interactions with immunizations and medications, (4) adverse effects (potential for and management of), and (5) monitoring needs. Pertinent questions were generated and addressed by the relevant committee. The entire group participated in a modified Delphi process to establish agreement on recommendations for each question. The committee developed 46 evidence- and consensus-based recommendations, each with >70% agreement among members, across all five topics. These are presented in tables and text, along with a discussion of supporting literature, and level of evidence. These evidence- and consensus-based recommendations will support safe and effective use of MTX for the underserved population of pediatric patients who may benefit from this valuable, time-honored medication.
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Dermatite Atópica , Psoríase , Humanos , Criança , Metotrexato , Consenso , Psoríase/tratamento farmacológico , Dermatite Atópica/tratamento farmacológicoRESUMO
BACKGROUND: Bleach bathing is frequently recommended to treat atopic dermatitis (AD), but its efficacy and safety are uncertain. OBJECTIVE: To systematically synthesize randomized controlled trials (RCTs) addressing bleach baths for AD. METHODS: We searched MEDLINE, EMBASE, CENTRAL, and GREAT from inception to December 29, 2021, for RCTs assigning patients with AD to bleach vs no bleach baths. Paired reviewers independently and in duplicate screened records, extracted data, and assessed risk of bias (Cochrane version 2) and GRADE quality of evidence. We obtained unpublished data, harmonized individual patient data and did Frequentist and Bayesian random-effects meta-analyses. RESULTS: There were 10 RCTs that enrolled 307 participants (median of mean age 7.2 years, Eczema Area Severity Index baseline mean of means 27.57 [median SD, 10.74]) for a median of 6 weeks (range, 4-10). We confirmed that other trials registered globally were terminated. Bleach baths probably improve AD severity (22% vs 32% improved Eczema Area Severity Index by 50% [ratio of means 0.78, 95% credible interval 0.59-0.99]; moderate certainty) and may slightly reduce skin Staphylococcal aureus colonization (risk ratio, 0.89 [95% confidence interval, 0.73-1.09]; low certainty). Adverse events, mostly dry skin and irritation, along with itch, patient-reported disease severity, sleep quality, quality of life, and risk of AD flares were not clearly different between groups and of low to very low certainty. CONCLUSION: In patients with moderate-to-severe AD, bleach baths probably improve clinician-reported severity by a relative 22%. One in 10 will likely improve severity by 50%. Changes in other patient-important outcomes are uncertain. These findings support optimal eczema care and the need for additional large clinical trials. TRIAL REGISTRATION: PROSPERO Identifier: CRD42021238486.
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Anti-Infecciosos , Dermatite Atópica , Eczema , Anti-Infecciosos/uso terapêutico , Banhos , Criança , Dermatite Atópica/tratamento farmacológico , Eczema/tratamento farmacológico , Humanos , Prurido/tratamento farmacológico , Staphylococcus aureusRESUMO
Direct insurance claims tabulation and risk adjustment statistical methods can be used to estimate health care costs associated with various diseases. In this third manuscript derived from the new national Burden of Skin Disease Report from the American Academy of Dermatology, a risk adjustment method that was based on modeling the average annual costs of individuals with or without specific diseases, and specifically tailored for 24 skin disease categories, was used to estimate the economic burden of skin disease. The results were compared with the claims tabulation method used in the first 2 parts of this project. The risk adjustment method estimated the direct health care costs of skin diseases to be $46 billion in 2013, approximately $15 billion less than estimates using claims tabulation. For individual skin diseases, the risk adjustment cost estimates ranged from 11% to 297% of those obtained using claims tabulation for the 10 most costly skin disease categories. Although either method may be used for purposes of estimating the costs of skin disease, the choice of method will affect the end result. These findings serve as an important reference for future discussions about the method chosen in health care payment models to estimate both the cost of skin disease and the potential cost impact of care changes.
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Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde , Dermatopatias/economia , Dermatopatias/epidemiologia , Adulto , Dermatologia/tendências , Feminino , Inquéritos Epidemiológicos , Humanos , Incidência , Masculino , Medicaid/economia , Medicare/economia , Pessoa de Meia-Idade , Estudos Retrospectivos , Risco Ajustado , Índice de Gravidade de Doença , Dermatopatias/diagnóstico , Estados Unidos/epidemiologiaRESUMO
There are an increasing number and variety of dermatologic surgical procedures performed safely in the office setting. This evidence-based guideline addresses important clinical questions that arise regarding the use and safety of local anesthesia for dermatologic office-based procedures. In addition to recommendations for dermatologists, this guideline also takes into account patient preferences while optimizing their safety and quality of care. The clinical recommendations presented here are based on the best evidence available as well as expert opinion.
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Assistência Ambulatorial , Anestesia Local/normas , Anestésicos Locais/administração & dosagem , Procedimentos Cirúrgicos Dermatológicos , Dor/prevenção & controle , Administração Tópica , Anestesia Local/efeitos adversos , Anestesia Local/métodos , Anestésicos Locais/efeitos adversos , Epinefrina/administração & dosagem , Medicina Baseada em Evidências , Humanos , Hialuronoglucosaminidase/administração & dosagem , Bloqueio Nervoso , Preferência do Paciente , Bicarbonato de Sódio/administração & dosagem , Vasoconstritores/administração & dosagemRESUMO
Over the course of their nearly 30-year history, the ABCD(E) criteria have been used globally in medical education and in the lay press to provide simple parameters for assessment of pigmented lesions that need to be further evaluated by a dermatologist. In this article, the efficacy and limitations of the ABCDE criteria as both a clinical tool and a public message will be reviewed.
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Detecção Precoce de Câncer , Melanoma/diagnóstico , Neoplasias Cutâneas/diagnóstico , Dermatologia/educação , Educação Médica Continuada , Clínicos Gerais/educação , Educação em Saúde , Humanos , Melanoma/patologia , Médicos de Família/educação , Médicos de Atenção Primária/educação , Encaminhamento e Consulta , Autoexame , Sensibilidade e Especificidade , Neoplasias Cutâneas/patologia , Avaliação de SintomasRESUMO
Atopic dermatitis is a chronic, pruritic inflammatory dermatosis that affects up to 25% of children and 2% to 3% of adults. This guideline addresses important clinical questions that arise in atopic dermatitis management and care, providing recommendations based on the available evidence. In this third of 4 sections, treatment of atopic dermatitis with phototherapy and systemic immunomodulators, antimicrobials, and antihistamines is reviewed, including indications for use and the risk-benefit profile of each treatment option.
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Anti-Infecciosos/uso terapêutico , Dermatite Atópica/tratamento farmacológico , Antagonistas dos Receptores Histamínicos/uso terapêutico , Fatores Imunológicos/uso terapêutico , Fototerapia , Azatioprina/uso terapêutico , Ciclosporina/uso terapêutico , Dermatite Atópica/terapia , Humanos , Interferon gama/uso terapêutico , Metotrexato/uso terapêutico , Ácido Micofenólico/análogos & derivados , Ácido Micofenólico/uso terapêutico , Fototerapia/efeitos adversosRESUMO
Importance: Atopic dermatitis (AD) is associated with psychosocial symptoms, resulting in significant mental health burden and reduced quality of life. Objective: To understand mental health support received by patients from their primary eczema provider. Design: We administered a cross-sectional survey (N = 954) to US caregivers and adult patients with AD. Setting: The National Eczema Association (United States) conducted an online survey in October 2022 among self-selected patients and caregivers. Outcome: Patients and caregivers of AD patients reported on mental health conversations and types of mental health support received by their/their child's provider. Results: Many patients did not discuss (41.9%) or were not asked (50.5%) about their mental health by their eczema provider, and 64% reported not receiving a mental health referral. Patients were more likely to receive mental health support if they were male (2.00 [1.08-3.69]), low or middle education level (4.89 [2.10-11.36], 2.71 [1.36-5.40]), or had purchased insurance policies (4.43 [1.79-10.98]). Providers were most likely to refer patients to counseling services (22.5%), followed by alternative mental health therapy (14.9%), cognitive behavioural therapy (13.3%) and peer/social support groups (12.2%). Conclusion: Despite the strong association between AD and mental health conditions, there is a significant proportion of patients that report not receiving mental health support from their/their child's primary eczema provider. Screening with validated measures may improve the identification of patients requiring additional support. Future research should evaluate the efficacy of mental health resources and barriers to accessing and referring patients for mental health care.
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Importance: The use of patient-reported outcome measures (PROMs) potentially holds promise as an opportunity to improve outcomes and quality of care for patients with skin disease, but the routine use of PROMs remains limited. While the Patient-Reported Outcomes Measurement Information System (PROMIS) has several strengths and domains relevant to those with chronic skin disease, it is not clear which are most useful. Objective: To determine which PROMIS domains are most meaningful to those with chronic skin disease to develop a PROMIS profile that effectively captures the experience of living with these skin diseases. Design, Setting, and Participants: This cross-sectional study was based on data gathered from an internet survey that was administered to a sample of adult respondents in the US on the Prolific Platform and ResearchMatch and through the National Psoriasis Foundation. A list of PROMIS domains relevant to chronic skin disease was developed through literature review. These domains were included in a best-worst scaling exercise, in which participants were shown 12 sets of 4 domains and asked to choose which domain in each set was the most important and least important to their experience. Participants completed the survey between December 2022 and June 2023. Data were analyzed in June 2023. Main Outcomes and Measures: Ratio-scaled preference score for each of the domains. Results: Of 939 total participants, 559 (59.5%) were female, 20 (2.1%) gender nonconforming, 7 (0.7%) transgender men, and 1 (0.1%) transgender women; there were 4 American Indian/Alaska Native (0.4%), 50 Asian (5.3%), 63 Black (6.7%), 66 Hispanic or Latino/a/x (7.0%), 2 Native Hawaiian/Pacific Islander (0.2%), 749 White (79.8%), and 42 multiracial individuals (4.5%). The survey was completed by 200 participants with acne, 316 with psoriasis, 199 with atopic dermatitis, and 224 with various chronic skin diseases. For those with acne, the highest-scored domains were body image (15.66), appearance (14.96), life satisfaction (11.29), depression (9.25), and anxiety (9.18). For those with psoriasis, the highest-scored domains were life satisfaction (11.31), appearance (11.05), itch (10.98), pain (9.97), and body image (8.75). For those with atopic dermatitis, the highest-scored domains were itch (12.60), life satisfaction (11.65), appearance (11.40), body image (11.25), and pain (10.03). Conclusion and Relevance: The results of this study suggest that body image, appearance, life satisfaction, itch, pain, anxiety, and depression were highly rated across the surveys. By identifying the PROMIS domains most important to individuals with chronic skin disease, clinicians can choose the domains that are most relevant to patients. In addition, this may guide the construction of a PROMIS profile that effectively captures the experience of living with these skin diseases and can serve as a patient-reported measure of disease severity and treatment effectiveness.
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Acne Vulgar , Dermatite Atópica , Psoríase , Adulto , Masculino , Humanos , Feminino , Estudos Transversais , Medidas de Resultados Relatados pelo Paciente , Dor , Doença CrônicaRESUMO
Background: Eczema clinical trials (CTs) are increasing in number, yet participation across the eczema community is low. Little is known about patient characteristics and views on motivators and barriers to CT participation (CTP). Objectives: Determine factors that motivate or impede participation in eczema CT and respondent characteristics associated with these factors. Methods: Qualitative thematic analysis was performed on open-ended questions from an online survey that collected respondent demographics, understanding of and experience with CTs, and drivers/barriers to CTP. Mixed-methods analysis included 924 respondents, 728 (78.8%) adults with eczema and 196 (21.2%) caregivers of children with eczema. Results: A large proportion (71.8%) of respondents would potentially participate in CTs. The most common theme for why a respondent considered or would explore CTP was burden of disease (81.0% and 57.3% respectively). Among those who participated in or considered a CT, caregivers (p = 0.001) reported fewer altruistic motivations compared to adult patients, with trends towards men citing disease burden more (57.0% vs. 50.9%) and altruism less (14.5% vs. 19.2%) than women. Lack of awareness (57.7%) was the most common reason for never having considered a CT. Among those who never considered CTP, age (p = 0.012) and eczema severity at its worst (p = 0.002) were associated with reasons why they never participated. Specifically, older and less severe patients had greater perceptions of eligibility as a barrier to CTP. Caregivers more commonly cited fear of CT risks (20% vs. 11.4%) compared to adult patients who cited accessibility concerns (17.7% vs. 8.6%) as barriers to CT exploration. A subgroup of respondents that never considered CTP and extremely unlikely to consider CTs cited more fears/risks/unknowns and accessibility barriers to CTP. No significant differences in motivators or barriers were observed across race/ethnic groups and urban/rural populations. Conclusions: Motivating factors for CTP include greater disease burden; lack of awareness represents a large barrier. Healthcare providers are trusted intermediaries with ability to refer and inform about CTs; they have a potentially significant role in raising awareness and discussing eczema patient/caregiver perspectives related to CTP. Investigators should tailor recruitment approaches and study design where possible to address identified motivators and barriers.
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Background: Atopic dermatitis (AD) is associated with elevated financial costs, including out-of-pocket (OOP) expenses. Yet, the full burden of OOP expenses in children with AD is poorly understood. Objectives: We sought to characterise categories, impact, and associations of caregiver-reported OOP AD healthcare expenses for US children. Methods: An online survey was administered to National Eczema Association members (N = 113 502). Inclusion criteria (US resident; respondent age ≥18; self or caregiver report of AD diagnosis) was met by 77.3% (1118/1447) of those who completed the questionnaire. Results: Caregivers of children (<18 years) with AD reported increased healthcare provider (HCP) visits, comorbid food allergy, cutaneous infections, and topical antimicrobial use (p < 0.005 for all), and increased OOP expenses for hospitalisation, emergency room visits, emollients, hygiene/bathing products, childcare, and specialised cleaning products, and clothing/bedding (p < 0.05 for all) compared to adults with AD. Children with AD had increased median total yearly OOP expenditures ($860 vs. $500, p = 0.002) and were more likely to spend ≥$1000 OOP per year (48.9% vs. 40.0%, p = 0.03). In children, yearly OOP expenses ≥$1000 were associated with increased AD severity, flares, HCP visits, prescription polypharmacy, and step-up therapy use (p < 0.005 for all) compared with adults. Predictors of harmful financial impact among children included black race (adjusted OR [95% confidence interval]: 3.86 [1.66-8.98] p = 0.002) and ≥$1000 annual OOP expenditures (6.98 [3.46-14.08], p < 0.0001). Conclusion: Children with AD have unique and increased OOP expenses that are associated with significant disease burden. Strategies are needed to reduce OOP costs and improve clinical outcomes in children with AD.
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OBJECTIVE: Patients with atopic dermatitis (AD) have low treatment satisfaction. In this study, we evaluated the humanistic burden, treatment satisfaction, and treatment expectations in patients with AD in the United States. METHODS: Adults with AD recruited through the National Eczema Association and clinical sites completed a web-based survey comprising the Patient-Oriented SCORing Atopic Dermatitis (PO-SCORAD), Dermatology Life Quality Index; Work Productivity and Activity Impairment Questionnaire-Atopic Dermatitis; Treatment Satisfaction Questionnaire for Medication (TSQM); and answered questions on healthcare provider (HCP) visits, treatment history, and treatment goals. Descriptive analyses were performed to compare participants by severity. RESULTS: Among 186 participants (mean [standard deviation] age 39.7 [15.3] years, 79.6% female), 26.9%, 44.6%, and 26.3% of the participants had mild, moderate, or severe AD, respectively, based on PO-SCORAD. Greater disease severity was associated with a greater impact on work and daily life, decreased TSQM scores, and increased HCP visits. Corticosteroid topical cream or ointment (53.8%) and oral antihistamines (31.2%) were most commonly used for the treatment of AD. Participants reported declining/stopping/changing AD treatment due to the potential for side effects or lack of efficacy. 'Leading normal lives' (28.0%) and 'being itch-free' (33.9%) were important treatment goals. CONCLUSIONS: Individuals with AD, especially severe disease, face a considerable humanistic burden even while using treatment.
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Dermatite Atópica , Adulto , Humanos , Feminino , Estados Unidos , Masculino , Dermatite Atópica/tratamento farmacológico , Qualidade de Vida , Índice de Gravidade de Doença , Prurido , Inquéritos e QuestionáriosRESUMO
Background: Emerging digital measures and clinical outcome assessments (COAs) leveraging digital health technologies (DHTs) could address the need for objective, quantitative measures of symptoms of atopic dermatitis (AD), such as nocturnal scratching. Development of such measures needs to be supported by evidence reflecting meaningfulness to patients. Objectives: To assess nocturnal scratching as a concept of interest associated with meaningful aspects of health of patients with AD (adults and children); and to explore patient-centred considerations for novel COAs measuring nocturnal scratch using DHTs. Methods: Phase 1 evaluated disease impacts on everyday life and the lived experience with nocturnal scratching through qualitative interviews of AD patients and caregivers. Phase 2 deployed a quantitative survey to a sample of AD patients as well as caregivers. Results: Four cohorts with various AD severity levels participated in Phase 1: (1) adults with AD (n = 15), (2) their caregivers/spouses/partners (n = 6), (3) children with AD (n = 14), and (4) their adult caregivers (n = 14). Findings were used to develop a conceptual model for nocturnal scratching as a potential concept of interest. The Phase 2 survey was completed by 1349 of 27640 invited adults with AD and caregivers of children with AD. The most burdensome aspects of AD reported were itchy skin and scratching. Overall, â¼65% of participants reported nocturnal scratching ≥1 day/week, resulting in â¼1-1.4 h of sleep lost per night. In all, 85%-91% of respondents considered it at least somewhat valuable that a treatment reduces night-time scratching. About 50% reported willingness to use technology to this end and â¼25% were unsure. Conclusion: Our results represented by the conceptual model confirm that nocturnal scratch is a concept of interest related to meaningful aspects of health for patients with AD and therefore is worth being captured as a distinct outcome for clinical and research purposes. DHTs are suitable tools presenting an important measurement opportunity to assess and evaluate occurrence, frequency, and other parameters of nocturnal scratching as a disease biomarker or COA of treatment efficacy.
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BACKGROUND: Previous studies have documented the high patient and caregiver burden associated with atopic dermatitis (AD). Less is known about the factors-especially those related to treatment options and the delivery of medical care-that may relate to burden and unmet needs among patients and their caregivers. OBJECTIVE: Our primary aim was to characterize and compare health-related quality of life, long-term control of symptoms, satisfaction with treatments, the financial burden, and the prevalence of patient-centered care among adult and pediatric patients with AD in 8 developed nations. METHODS: We developed a 53-item anonymous online survey for adult patients and caregivers of children with AD (N = 3171; self-reported disease severity: 8.2% clear, 33.2% mild, 41.1% moderate, 17.6% severe). The survey included questions across 7 domains selected by a steering committee of 11 patient organizations that advocate for patients with AD in the 8 countries. We used validated instruments when available including the 5-level EuroQol five-dimensional questionnaire and the Atopic Dermatitis Control Tool. The survey was offered in 5 languages and promoted through social media and other communication channels of the patient organizations. RESULTS: The health-related quality-of-life scores for adult patients with AD (driven by 2 domains: pain/discomfort and anxiety/depression) were worse than those reported for asthma and type 2 diabetes in previous studies (0.72; 95% CI, 0.65-0.78). Patients and caregivers reported substantial financial impacts even in countries with government-funded health care systems, though the greatest impact was in the United States. In all countries, adults reported better control of symptoms than children, but neither group nor any nationality reported adequate control on average (rescaled mean, 57.5; 95% CI, 56.1-58.9), and control correlated negatively with disease severity. Similarly, satisfaction with treatments, which was moderate across countries on average, was much lower for respondents with more severe disease symptoms (F(3,3165) = 5.5; P < .001). Patients who saw a specialist (a dermatologist or an allergist) instead of a general practitioner for AD care indicated better long-term control of symptoms (by 4 points on average on the 100-point scale; 95% CI, 2.6-5.4; P < .001). Finally, self-management training and shared decision making were uncommonly reported by patients in all countries except by respondents from the United States, but both were associated with better long-term control of symptoms and higher satisfaction. CONCLUSIONS: The burden of AD, evaluated as health-related quality-of-life detriments, financial impacts, and uncontrolled symptoms, is significant and highest for patients with more severe atopic dermatitis who report greater challenges in achieving symptom resolution with existing treatments and approaches to care. The better outcomes associated with respondents who saw specialists suggest that patients, especially those with more severe AD, might benefit from medical care that is guided by providers with more in-depth knowledge of this complex condition. Finally, wider use of patient-centered care practices (specifically, self-management training and shared decision making) could improve outcomes and boost satisfaction with treatments for AD, though more research on this topic is warranted.
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Dermatite Atópica , Diabetes Mellitus Tipo 2 , Adulto , Humanos , Criança , Dermatite Atópica/epidemiologia , Dermatite Atópica/terapia , Dermatite Atópica/diagnóstico , Qualidade de Vida , Cuidadores , Assistência ao Paciente , Índice de Gravidade de DoençaRESUMO
Importance: Patient values and preferences can inform atopic dermatitis (AD) care. Systematic summaries of evidence addressing patient values and preferences have not previously been available. Objective: To inform American Academy of Allergy, Asthma & Immunology (AAAAI)/American College of Allergy, Asthma and Immunology (ACAAI) Joint Task Force on Practice Parameters AD guideline development, patient and caregiver values and preferences in the management of AD were systematically synthesized. Evidence Review: Paired reviewers independently screened MEDLINE, Embase, PsycINFO, and CINAHL databases from inception until March 20, 2022, for studies of patients with AD or their caregivers, eliciting values and preferences about treatment, rated risk of bias, and extracted data. Thematic and inductive content analysis to qualitatively synthesize the findings was used. Patients, caregivers, and clinical experts provided triangulation. The GRADE-CERQual (Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research) informed rating of the quality of evidence. Findings: A total of 7780 studies were identified, of which 62 proved eligible (n = 19â¯442; median age across studies [range], 15 years [3-44]; 59% female participants). High certainty evidence showed that patients and caregivers preferred to start with nonmedical treatments and to step up therapy with increasing AD severity. Moderate certainty evidence showed that adverse effects from treatment were a substantial concern. Low certainty evidence showed that patients and caregivers preferred odorless treatments that are not visible and have a minimal effect on daily life. Patients valued treatments capable of relieving itching and burning skin and preferred to apply topical corticosteroids sparingly. Patients valued a strong patient-clinician relationship. Some studies presented varied perspectives and 18 were at high risk for industry sponsorship bias. Conclusions and Relevance: In the first systematic review to address patient values and preferences in management of AD to our knowledge, 6 key themes that may inform optimal clinical care, practice guidelines, and future research have been identified.
Assuntos
Asma , Dermatite Atópica , Eczema , Humanos , Feminino , Adolescente , Masculino , Dermatite Atópica/terapia , Cuidadores , Prurido , Eczema/tratamento farmacológicoRESUMO
DISCLOSURES: No funding contributed to the writing of this commentary. Smith Begolka, Butler, and Guadalupe are salaried employees of the National Eczema Association, which has received grants and sponsorship awards from a variety of industry partners, including AbbVie, Eli Lilly, Incyte, LEO Pharma, Pfizer, Regeneron, and Sanofi. Smith Begolka has received grant funding from Pfizer and advisory board honoraria from Pfizer and Incyte. Butler and Guadalupe have received advisory board honoraria from Incyte.
Assuntos
Dermatite Atópica/tratamento farmacológico , Incerteza , Anticorpos Monoclonais/economia , Anticorpos Monoclonais/uso terapêutico , Análise Custo-Benefício , Custos de Medicamentos , Humanos , Inibidores de Janus Quinases/economia , Inibidores de Janus Quinases/uso terapêutico , Adesão à Medicação , Estados UnidosRESUMO
BACKGROUND: Atopic dermatitis (AD) is associated with substantial financial cost, including increased out-of-pocket (OOP) expenses. Associations and impact of OOP costs are poorly understood. OBJECTIVE: The aim of the study was to characterize the impact and associations of OOP health care expenses for AD. METHODS: A 25-question online survey was administered to National Eczema Association members (N = 113,502). Inclusion criteria (US residents aged ≥18 years; self-reported AD or primary caregiver of individual with AD) were met by 77.3% (1118 of 1447). RESULTS: Respondents with monthly OOP expenses greater than $200 were more likely to have increased AD severity, flares, health care provider visits, prescription polypharmacy, use of step-up therapy, frequent skin infections, and poorer disease control ( P < 0.005 for all). Respondents with OOP yearly expenditures greater than $1000 had similar associations and additionally increased rates of comorbid asthma, allergic rhinitis, and anxiety/depression ( P < 0.005 for all). A total of 64.6% (n = 624) reported harmful household financial impact of OOP expenses. Predictors of harmful impact included severe AD (adjusted odds ratio [95% confidence interval], 2.62 [1.11-6.19], P = 0.04), comorbid asthma (1.42 [1.07-1.87], P = 0.03), 5 health care provider visits or more in a year (2.80 [1.62-4.82], P = 0.0007), greater than $200 OOP monthly expenditures (2.16 [1.45-3.22], 0.0006), and $1000 annual OOP expenditures or more (4.56 [3.31-6.27], P < 0.0001). CONCLUSIONS: Out-of-pocket expenses for AD significantly impact household finances. Clinical interventions are needed to minimize OOP expenses while optimizing care outcomes.Capsule Summary:⢠Atopic dermatitis (AD) is associated with significant financial cost, including increased out-of-pocket (OOP) expenses, although the impact and associations of OOP health care expenses for AD management are not well understood.⢠The OOP health care expenses related to AD are associated with increased disease severity and health care utilization and significantly impact the household finances of patients and caregivers.⢠Health care providers should be mindful of the OOP financial burden related to AD management and engage in shared decision making to create a treatment plan that is practical and effective and minimizes household financial impact.