Quality of life and stigmatization in people with skin diseases in Europe: A large survey from the 'burden of skin diseases' EADV project.

BACKGROUND: Several large studies on the burden of skin diseases have been performed in patients recruited in hospitals or clinical centres, thus missing people with skin diseases who do not undergo a clinical consultation. OBJECTIVES: To evaluate the burden of the most common dermatological diseases in adult patients across Europe, in terms of quality of life, work life, and stigmatization. METHODS: Population-based survey on a representative sample of the European general population aged 18 years or older. Participants who declared to have had one or more skin problem or disease during the previous 12 months completed the Dermatology Life Quality Index questionnaire, and answered questions regarding the impact of their skin disease on daily and work life, anxiety/depression, and stigmatization. RESULTS: The study population included 19,915 individuals, 44.7% of whom were men. Quality of life was particularly impaired in people with hidradenitis suppurativa (HS), and sexually transmitted diseases. About a half of participants with acne, alopecia, or chronic urticaria, and about 40% of those with atopic dermatitis (AD), skin cancers, or psoriasis reported a modest to extremely large effect of the disease on their quality of life. Overall, 88.1% of participants considered their skin disease as embarrassing in personal life and 83% in work life. About half of the respondents reported sleeping difficulty, feeling tired, and impact of the disease on taking care of themselves. Concerning stigmatization, 14.5% felt to have been rejected by others because of the skin disease, and 19.2% to have been looked at with disgust. Anxiety and depression were frequently reported by patients with all the diseases. CONCLUSIONS: Skin diseases may heavily affect patients' daily and work life, and cause feelings of stigmatization. An early intervention is needed to avoid consequences on the patients' life course.

Public perception of dermatologists in Europe: Results from a population-based survey.

BACKGROUND: The public perception of dermatology has been poorly investigated in Europe. OBJECTIVE: To determine the general public's perception of dermatologists in Europe. METHODS: This multinational, cross-sectional study was conducted within the framework of the EADV population-based survey on the 'Burden of skin diseases in Europe'. Data were collected using a web-based online survey on a representative sample of the general populations aged 18 years or more of 27 European countries. Proportional quota sampling with replacement design was used for each country. RESULTS: A total of 44,689 adult participants responded to the questionnaire, of whom 18,004 visited a dermatologist in the preceding 3 years. The dermatologist was the second most often visited specialist among all medical specialties, with 69.7%, 72.1%, 42.1% and 78.1% of participants in Western Europe (WE), Eastern Europe (EE), Northern Europe (NE) and Southern Europe (SE), respectively, having consulted a dermatologist over the past 24 months. Most participants across all regions agreed that the dermatologist was the first healthcare provider for chronic skin diseases (61.9% in WE, 69.8% in EE, 45.7% in NE and 60.4% in SE) and for skin cancers (65.5% in WE, 67.6% in EE, 42.4% in NE and 63.0% in SE). The five most common reasons for visiting a dermatologist among all participants were: naevi check-up or skin cancer screening (20.2%), chronic skin diseases (16.5%), acute skin diseases (12.4%), cosmetic advice or procedure (10.2%), hyperpigmentation or congenital lesions (9.1%) and hair or nail disorder (7.7%). Most participants (84.6% in WE, 82.5% in EE, 78.3% in NE and 82.8% in SE) were very swatisfied/somewhat satisfied with the service provided. CONCLUSION: Our study findings underscore the central role of dermatologists in skin health and highlights them as valued and trusted care providers across Europe. Understanding the perceived position of the dermatologist is the first step in improving health policy development and implementation. Notably, access to a dermatologist was lowest in NE, probably reflecting differences in healthcare organizational structures or possibly cultural differences in healthcare seeking behaviour.

The journey of patients with skin diseases from the first consultation to the diagnosis in a representative sample of the European general population from the EADV burden of skin diseases study.

BACKGROUND: The journey of patients with skin diseases through healthcare has been scarcely investigated. OBJECTIVE: To analyse the journey of people with skin diseases in the different healthcare environment in Europe. METHODS: This multinational, cross-sectional, European study was conducted on a representative sample of the adult general population of 27 European countries. The prevalence of the most frequent skin diseases was determined. Information was collected on the patient journey from the first medical consultation to the diagnosis, and the reasons for not consulting a healthcare professional. RESULTS: On a total of 44,689 individuals, 30.3% reported to have consulted a dermatologist during the previous 2 years. Participants consulted mainly for mole control or skin cancer screening (22.3%), followed by chronic skin diseases (16.2%). The diagnoses of acne, atopic dermatitis, psoriasis and rosacea were made most frequently by a dermatologist, while fungal skin infections were diagnosed more often by a general practitioner (GP), and sexually transmitted diseases (STD) by other specialists. The diagnosis was not always definitive at the first consultation, in particular for STD. The percentage of people who did not consult a healthcare professional for their skin disease was particularly high for acne (36.4%), alopecia (44.7%) and fungal infection (30.0%). Moreover, 17.7% of respondents with psoriasis did not consult. A high percentage of participants with alopecia thought that the disease was not worrying, while patients with psoriasis often answered that they were able to manage the disease since they had already consulted a doctor. Many patients with acne (41.1%) and fungal infection (48.2%) thought that they were able to handle the disease by themselves. CONCLUSION: The analysis of the self-reported medical journey of patients with common skin diseases may allow to understand the unmet needs of patients, thus improving outcomes and reducing expenses.

Prevalence of excessive daytime sleepiness among patients with atopic dermatitis.

Sleep disorders have received considerable attention from the dermatologic community, especially in patients with atopic dermatitis. We confirmed that excessive daytime sleepiness is a common problem among patients with atopic dermatitis, with it affecting 46.1% of the evaluated subjects. We demonstrated that excessive daytime sleepiness was also significantly associated with disease severity in patients with atopic dermatitis and had a detrimental impact on quality of life, well-being and burden. These findings suggest the importance of careful assessment and the management of sleep disorders in atopic dermatitis patients. Intervention programs for sleep disorders in this population might help to improve their quality of life and their well-being.

Use of multiple correspondence analysis to explore associations between caregivers and sun protective habits during summer vacations.

BACKGROUND: Childhood exposure to ultraviolet radiation (UVR) plays an important role in the development of keratinocyte carcinomas and melanomas. Therefore, sun protective measures ought to be implemented during early childhood. Young children are largely dependent upon adult care providers in order to achieve proper sun protection. OBJECTIVES: To develop effective photoprotection in children, it is necessary to understand caregivers' attitudes and knowledge about UVR exposure. This study aimed to explore the variables associated with sun protective behaviour in parents and grandparents during summer vacations. METHODS: A multinational, cross-sectional study was conducted using a web-based online survey with a representative sample of parents and grandparents of children aged ≤ 12 years, who cared for their children/grandchildren for at least 2 weeks during the summer of 2021, in five countries (France, Germany, Spain, Italy and the USA). Multiple correspondence analysis (MCA) was used to explore in an unbiased way the possible relationships among all the variables and to identify specific profiles. RESULTS: A total of 6190 adult participants responded to the questionnaire: 5104 parents (average age 42.0 years, 54.3% women) and 1086 grandparents (average age 64.2 years, 55.5% women). MCA allowed discrimination of two groups of respondents based on their answers: a profile with 'unprotected sun exposure habits' vs. those with 'protective sun exposure habits'. Parents fell in closer proximity to the 'unprotected sun exposure habits', and 'sunburn reported in youngest child'. Grandparents adopted more cautious behaviours than parents. Nevertheless, grandparents fell in proximity to 'having exposed the grandchild to the sun between 11 h and 17.00 h', 'not using an umbrella' and 'not using sunglasses'. CONCLUSIONS: Although grandparents appear to adopt more cautious behaviours than parents, many gaps in proper sun protection behaviour were observed in both groups of caregivers.

The Ectodermal Dysplasias-Burden of Disease Score: Development and Validation of an Ectodermal Dysplasia Family/Parental Burden Score.

Ectodermal dysplasias are genetic conditions affecting the development and/or homeostasis of 2 or more ectodermal derivatives, including hair, teeth, nails, and certain glands. No tool is available to assess the burden of ectodermal dysplasias and its multidimensional impact on patients and their families. This study developed and validated a familial/parental 19-item burden questionnaire designed specifically for ectodermal dysplasias. Each group of questions was linked to 1 of the following dimensions: (i) Impact of the disease on social life and hobbies; (ii) Future prospects; (iii) Restraint of the disease on outdoor activities; (iv) Financial burden of the disease; (v) Acceptance of the disease. Cronbach's alpha was 0.91 for the entire Ectodermal Dysplasias-Burden of Disease (ED-BD) scale, confirming excellent internal coherence. Intradimensional coherences all demonstrated excellent reliability (α > 0.76). The ED-BD questionnaire was highly correlated with the Short Form-12 and Psychological General Well Being Index validated questionnaires. Cultural and linguistic validation in US English was conducted. Development and validation of the questionnaire was based on data from patients with the 2 main ectodermal dysplasias subtypes. This ED-BD questionnaire represents the first specific assessment tool for evaluating the familial/parental burden of ectodermal dysplasias.

Psoriasis and sexuality: Patients express their feelings.

Background: In France, psoriasis is a chronic inflammatory skin disease. For several years now, particular attention has been given to the quality of life (Qol) of psoriasis patients. Sexual dysfunction (SD) defined as not wanting or enjoying sexual experience is an important component of Qol. Psoriasis through its physical symptoms and psychological consequences can thus be responsible for SD. Method: The survey participants were recruited through the national psoriasis dermatitis patient association. Result: 41% (577) patients reported having SD related to their psoriasis. Women reported significantly more SD than men (387 [44.7%] vs. 190 [35%], p < 0.001). For 396 (28.1%) patients SD due to their psoriasis manifested as a reduction in the frequency of sexual activity, for 207 (14.7%) as change in their sexual practice, and for 284 (27.4%) as an absence of sexual activity without significant difference between women and men. The main consequence of sexual difficulties for patients was loss of self-confidence in 627 (44.5%) cases, guilt in 209 (14.8%) cases, couple life impairment in 214 (15.2%) cases, isolation in 260 (18.5%) cases and frustration. Discussion: In this study investigating SD related to psoriasis, we found that the disease impact sexual relations of 41% of patients of both gender. The main causes of SD were both physical alone and psychological alone, in the same proportions. The physical symptoms of psoriasis are therefore not the only ones responsible for the sexual discomfort reported from patients in their sexual relations. This may be due to a discomfort of the patient or the physician when talking about sexuality because they can't find the terms to talk about this subject often considered taboo and the age or gender difference. This aspect of the disease should be considered by physicians who care for patients with psoriasis, especially dermatologists. Finally, other strategies should be implemented, such as patient talk groups, referral guides or personalised therapeutic education.

Impact of Atopic Dermatitis on Patients and their Partners.

Atopic dermatitis is a chronic, relapsing and inflammatory skin disease. The impact of atopic dermatitis on the partners living with patients has been poorly investigated. The objective of this study was to evaluate the impact of atopic dermatitis in the daily lives of adult patients and to assess the burden of the disease on their partners. A population-based study was conducted on a representative sample of the general population of French adults aged 18 years of age using stratified, proportional sampling with a replacement design. Data were collected on 1,266 atopic dermatitis patient-partner dyads (mean age of patients 41.6 years, 723 (57.1%) women). The mean age of partners was 41.8 years. Patient burden, measured by the Atopic Dermatitis Burden Scale for Adults (ABS-A) score, was closely related to the objective atopic dermatitis severity: the mean score in the mild group (29.5) was significantly lower than in the moderate (43.9) and severe groups (48.6) (p < 0.0001). Partner burden, measured by the EczemaPartner score, was highly related to atopic dermatitis severity (p < 0.0001). Daytime sleepiness, measured by the Epworth Sleepiness Scale, showed a mean score of 9.24 in patients and 9.01 in their partners, indicating impaired sleep. Atopic dermatitis was found to decrease sexual desire in 39% and 26% of partners and patients respectively.