Abstract Two former multicentre studies initiated by European Society for Dermatology and Psychiatry members focused on the psychological burden of patients with skin diseases (depression, anxiety, stress, perceived stigmatization and body dysmorphia). The main objective of this study is to assess coping, loneliness and resilience in patients with skin conditions and to compare them with findings from controls with healthy skin. A secondary aim is to examine the impact of the skin disease on the patient’s partner. Data will be collected in 23 study centres across 15 European countries. At each study centre, 250 outpatients with different skin conditions and 125 controls with healthy skin will be recruited. In addition to a background questionnaire to gather sociodemographic and disease-related data, validated questionnaires will be applied to measure coping (Brief-COPE), loneliness (UCLA Loneliness Scale-8), resilience (Brief Resilience Scale), sleep disorders (Insomnia Severity Index), symptoms of depression (Patient Health Questionnaire-2) and anxiety (General Anxiety Disorder-2), general health (visual analogue scale of the EuroQol-5-D) and skin health (Skin Well-Being Scale). In patients, health-related quality of life will additionally be examined by means of the Dermatology Life Quality Index. All patients with a partner will additionally complete the Family Reported Outcome Measure-16, a questionnaire to be filled in by their partners to evaluate the impact of disease on the partner. Coping is defined as cognitive and behavioural efforts to manage demands perceived as exceeding personal resources, and includes problem-focused and emotion-focused strategies. In patients with psoriasis, coping styles vary according to age, sex and lesion localization. A recent French study suggested that resilience – the ability to adapt to health-related adversity – is reduced in individuals with skin diseases and is influenced by disease burden and sociodemographic factors. Loneliness, a construct inversely related to social support and associated with adverse health outcomes, has been reported to be elevated in several dermatological conditions, although findings differ across skin diseases and study populations.
Introduction: Psoriasis has a profound impact on patients’ quality of life, affecting their emotional well-being, social interactions, and career choices. However, current assessment tools fail to capture the long-term burden of psoriasis. Objective: The aim of this study was to develop the CORONATE questionnaire, designed to assess the lifelong impact of moderate-to-severe psoriasis on patients' lives. Methods: A multicenter cross-sectional study was conducted in 15 Italian dermatology centers. This study included 300 patients (age ≥30 years) diagnosed with moderate-to-severe psoriasis (PASI ≥10 or PASI <10 with involvement of sensitive areas). The CORONATE questionnaire, initially consisting of 25 items, was refined through factor analysis. Exploratory and confirmatory factor analyses were performed. Results: The final questionnaire included 18 items grouped into two dimensions: "Work Issues" (5 items) and "Psychosocial Life" (13 items). Factor analysis confirmed strong internal consistency (Cronbach’s alpha: Work Issues = 0.81; Psychosocial Life = 0.91). The model showed excellent fit indices (χ² (153) = 6956.471, P<0.001; Comparative Fit Index = 0.998; Tucker-Lewis Index = 0.998; Standardized Root Mean Square Residual = 0.053). Conclusion: The CORONATE questionnaire is a reliable tool for assessing the cumulative burden of psoriasis. Its implementation in clinical practice may improve personalized patient care.
Hidradenitis suppurativa (HS) has a profound negative impact on patients' Quality of Life (QoL). The European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and Patient Oriented Outcomes and TF on Acne, Rosacea and Hidradenitis Suppurativa (ARHS), together with external experts, decided to provide an updated position statement on QoL measurement in HS. In our previous position statement on HS, we stated that a Dermatology Life Quality Index (DLQI) score of 0-1, corresponding to no effect on patient's life according to the DLQI banding descriptions, may be considered as a difficult to reach but important treatment goal: achievement of this goal has since been used as an efficacy criterion in several clinical trials. For many HS treatment methods, there is still a lack of well-organized randomized clinical trials with sufficient participant numbers in which QoL instruments have been used as outcome measures. The DLQI is the most widely used QoL instrument in HS. Clinical recommendations and treatment efficacy are based on its score grading system and minimal clinically important difference (MCID). The HS-specific QoL instruments HSIA, HSQoL-24, HiSQOL, and QoL-HS have a satisfactory number of items for routine clinical use and short recall periods. HiSQOL and HSQoL-24 have score grading systems and the MCID for HiSQOL has been established. The TF on QoL and Patient Oriented Outcomes and TF on ARHS recommend that QoL be assessed in HS: dermatology-specific and HS-specific instruments may be used alongside each other.
BACKGROUND:Despite the established association between gliptins and bullous pemphigoid (BP), knowledge of BP risk and its clinical and immunological phenotypes among individual gliptins remains fragmentary. OBJECTIVE:To estimate BP risk among different gliptins, compare the demographic, clinical, and immunological profiles of idiopathic and patients with bullous pemphigoid and gliptin-treated type 2 diabetes (BPT2D-G), and evaluate the diagnostic performance of a BP180-ectodomain enzyme-linked immunosorbent assay. METHODS:Patients with BP and/or type 2 diabetes who visited 2 Italian hospitals during 2019 to 2023 were prospectively enrolled and clinically/immunologically characterized in a case-control study using in-house enzyme-linked immunosorbent assays detecting reactivity to BP180 extracellular epitopes. RESULTS:Overall, gliptin exposure demonstrated a strong association with BP, whereas sitagliptin did not exhibit a comparable effect. BPT2D-G showed a distinctive humoral profile, with high reactivity to other epitopes beyond BP180-noncollagenous 16A domain. A subset of patients, mainly exposed to linagliptin and BP180-noncollagenous 16A domain/BP230 negative, presented milder, often noninflammatory disease: a BP180-ectodomain assay improved diagnostic performances in these patients. LIMITATIONS:Potential residual confounding; limited generalizability; limited data on gliptin exposure duration. The observational design precludes causal inference. CONCLUSION:Different BP risks among gliptins may inform therapeutic choices, favoring sitagliptin in elderly patients. Personalized management of patients with BP180-noncollagenous 16A domain/BP230-negative BPT2D-G may reduce unnecessary use of high-potency topical and systemic corticosteroids. BP180-ectodomain-based diagnostic assays may facilitate BPT2D-G diagnosis.
A 1698-patient multinational (Brazil, China, France, USA) study evaluated the Dermatological Mental Load Questionnaire (DMLQ) in adults with chronic skin conditions including acne, atopic dermatitis, hidradenitis suppurativa, psoriasis, rosacea and vitiligo, confirming its two-factor structure (psychological burden and disease management), good internal consistency and acceptable convergent validity with stigma and long-term life-impact measures. The DMLQ proved particularly robust in common conditions (acne, atopic dermatitis, psoriasis), while results in hidradenitis suppurativa and vitiligo require cautious interpretation, supporting its use as a brief, pragmatic tool to quantify mental load in routine practice and research on chronic dermatoses.
Atopic dermatitis imposes a significant mental load on patients, an often-overlooked aspect that we addressed by developing the Dermatological Mental Load Questionnaire (DMLQ) in French and validating it with 1201 adults. This eight-item tool, designed following COSMIN methodology, identifies two key dimensions (psychological burden and disease management) and demonstrates excellent reliability and validity. Adapted into multiple languages, the DMLQ offers a novel perspective for assessing and enhancing care for patients with atopic dermatitis and, potentially, other skin conditions.
Hidradenitis suppurativa (HS) is a chronic, skin-immune-mediated inflammatory disease (sIMID), with a high impact on quality of life (QoL). Data on clinical management, comorbidities, psychosocial burden, and psychiatric disorders in pediatric patients with HS are scarce. The aim of our study was to compare clinical characteristics and patient-reported outcome measures (PROMs) for health-related quality of life (HRQoL) in adult and pediatric patients with HS. Data were collected on 601 patients with HS, 60 of whom (10.0%) were pediatric. The psychological and HRQoL impact was generally higher in adults than children, but it was also noteworthy in pediatric patients. Early diagnosis and interventions based on education for the patients and their families and psychological support are the key to optimal disease management and adherence. Our study underlines the need for screening for HS-associated psychiatric disorders and for using age-specific tools to evaluate HRQoL. A multidisciplinary approach involving several specialists is needed, as well as liaison with primary care specialists to improve care and management of comorbidities and psychological issues in patients with HS.
BACKGROUND:Anxiety, depression and suicidal ideation are frequent in patients with chronic prurigo (CPG). OBJECTIVE:To analyze perceived stress, stigmatization, body dysmorphia, anxiety, depression and itch-related quality of life in CPG patients and compare them to controls, and then to identify variables/predictors of them. METHODS:This study is part of a cross-sectional multicenter study in 17 European countries including 5487 consecutive patients and 2808 controls. RESULTS:One hundred twenty-seven individuals with prurigo were included in the analyses. They reported higher levels of stress, stigmatization, and body dysmorphia than controls. In the patient group, stigmatization was associated with higher stress and having a severe disease, stress with younger age and lower income, depression and anxiety with lower income and higher itch intensity, body dysmorphia with younger age, and dissatisfaction with appearance. LIMITATIONS:CPG patients were older than controls and had significantly more comorbidities. However, multivariate analysis allowed controlling for these differences by including them as a covariate. CONCLUSION:CPG patients have high levels of perceived stress, perceived stigmatization and body dysmorphic, which are partly related to sociodemographic factors like younger age or lower income as well as to other psychological and disease-related factors.
IntroductionPsoriasis is a chronic immune-mediated inflammatory skin disorder, frequently associated with comorbidities such as obesity, which can exacerbate its severity and hinder treatment efficacy. Psoriasis pathogenesis involves complex interactions among genetic, environmental, hormonal factors, and is characterized by dysregulated immune responses. In this study, we investigated the relationship between obesity and psoriasis, exploring the impact of circulating levels of adipokines on disease severity, comorbidities, and treatment response to anti-IL-17 and anti-IL-23 biologics.MethodsWe conducted an observational study that included 91 patients with psoriasis eligible for biological therapy, as well as 26 healthy controls. Disease severity was assessed using PASI, along with the measurement of body composition. Serum samples were analyzed for the measurement of adipokine levels and lipid profiles. Clinical parameters, bioelectrical impedance analysis (BIA), serum adipokine levels (leptin, visfatin, adiponectin) and lipid profile were assessed at baseline and after 16 weeks of biologic treatments.ResultsClinical parameters and adiposity-related indices were analyzed in 76 patients at both T0 and 16 weeks of anti-IL-17 and anti-IL-23 biological treatments, while serum adipokine levels were assessed in 66 patients. Psoriatic patients exhibited higher body mass index (BMI), waist circumference, fat mass (FM), and levels of visfatin (a pro-inflammatory adipokine), whereas adiponectin levels (an anti-inflammatory adipokine) were lower compared to controls. Circulating leptin (a pro-inflammatory adipokine) was significantly higher in female psoriatic patients and showed a positive correlation with the PASI score. Leptin also positively correlated with adiposity indices, while adiponectin showed negative correlations. Furthermore, in women, leptin levels were also associated with psoriatic arthritis, hypertension and, at lower extent, with type II diabetes. Finally, treatment with anti-IL-23 led to a reduction in visfatin levels in female psoriatic patients and resulted in a significant decrease in fat mass percentage in men. Notably, higher baseline leptin levels were associated with the failure to achieve an 90% improvement in baseline PASI at W16 of anti-IL-23 biologic treatments.ConclusionsThis study highlights significant sex-specific differences in the relationships between adipokines, body composition indices, psoriasis severity, comorbidities, and clinical outcome to therapies. Leptin, in particular, may serve as a predictive biomarker for response to anti-IL-23 therapies.
In this paper, the European Academy of Dermatology and Venereology (EADV) Task Force on Quality of Life (QoL) and Patient-Oriented Outcomes presents its position statements on health-related (HR) QoL assessment in epidermolysis bullosa (EB). The EADV TF on QoL and Patient-Oriented Outcomes recommends the use of the EB-specific instrument QOLEB in patients over the age of 10 years and, in addition to the QOLEB, the use of iscorEB-p in moderate-to-severe EB; the IntoDermQoL proxy instrument with its EB-specific module should be used in children aged under 5 years. The EB-specific instrument iscorEB-p, and the dermatology-specific instrument CDLQI may measure HRQoL in children with EB aged from 5 to 10 years. Dermatology-specific and/or generic HRQoL instruments should be used to compare the impact on QoL of EB with other diseases; family QoL of patients with EB should be studied using the EB-specific EB-BoD, dermatology-specific family measures, and/or generic family QoL instruments.
INTRODUCTION:Migration is an increasing phenomenon and associated with a physical and psychosocial burden on individuals. Little is known about migration and skin health. The objective of this study was to describe the characteristics of patients regarding migration background and dermatological morbidity among adults seen in a dermatological out-patient clinic in Malmö, Sweden. METHODS:An observational cross-sectional study was performed in 2017. Dermatological out-patients completed questionnaires and were examined by a dermatologist. Sociodemographic variables including ethnicity and migration status were assessed by self-report. Ethnicity was assessed with country of birth. General and physical health and details about skin disease were self-reported. Stress was assessed by the Perceived Stress Scale (PSS) and with items assessing stressful life events and economic difficulties. Depression and anxiety were assessed with the Patient Health Questionnaire-2 (PHQ-2) and the General Anxiety Disorder Assessment-2 (GAD-2). RESULTS:250 patients were included. 24% were foreign-born (FB) reporting 41 different countries of birth. Mean duration of living in Sweden was 24.4 years. Compared to non-foreign-born (NFB) patients, FB patients were more stressed (PSS mean 17.5 vs. 15.3, p = 0.044), had more economic difficulties (31.0% vs. 14.6%, p = 0.005) and more anxiety (39.7% vs. 24.9%, p = 0.03). There were significantly fewer patients with psoriasis in FB and more with connective tissue disease. FB rated skin disease severity significantly higher than NFB patients. CONCLUSION:This study reports the multi-ethnic population in an out-patient dermatological clinic in Malmö, Sweden and the difference in distribution of dermatological conditions among FB patients and NFB patients as well as the burden of disease, with higher levels of stress and anxiety in FB patients. These issues will be investigated further by our group in a larger multicentre study.
Adults with atopic dermatitis (AD) frequently experience significant sexual health issues, impacting their overall quality of life. Our study, involving a representative sample of the French population, highlights the prevalence of sexual dysfunction in AD patients, particularly among younger individuals, those with severe disease, and those experiencing stress and fatigue. These findings underscore the need to address sexual health in the comprehensive management of AD.
Background:Skin diseases are symptomatic, visible, and stigmatizing and it is acknowledged that they can be associated with stress. However, large studies comparing disease-specific stress are scarce. Objectives:To investigate stress in a large, diverse sample of patients with different skin conditions and identify predictors of stress. Methods:A cross-sectional, multicenter study was conducted in 22 dermatology clinics across 17 European countries (response rate 82.4%). The study included 5487 patients diagnosed with various dermatological conditions and 2808 skin-healthy controls. The Perceived Stress Scale, 10 items was used to measure stress. Results:Patients reported significantly higher stress levels, more stressful life events during the last 6 months, and more economic difficulties than controls. Patients with psychodermatological conditions, hyperhidrosis, hidradenitis suppurativa, atopic dermatitis, acne, and urticaria experienced the highest stress levels. 44% of the variance of perceived stress in patients with skin conditions could be predicted by sociodemographic data and disease-related and psychological variables (depression, anxiety, stigmatization, and body dysmorphic concerns). Limitations:As with all cross-sectional studies, causality and directionality cannot be inferred. Conclusion:Stress poses a significant psychosocial burden to dermatological patients, especially to vulnerable subgroups. Health interventions targeting stress may be essential to improve clinical outcomes.
Delays remain in patients receiving effective treatment strategies that have potential to clear their skin of psoriasis, improve their quality of life (QoL) and change the psoriatic disease course, which, if uncontrolled, can irreversibly alter an individual’s life course (i.e. cumulative life course impairment [CLCI]). This study explored current international awareness and consideration of the potential impact of psoriasis over the life course within clinical assessments and decisions about its management. Cross-sectional surveys collated insights from people with psoriasis and healthcare professionals (HCPs) treating psoriasis (dermatologists and primary care physicians [PCPs]) across 29 countries. Data were collected from 487 people with psoriasis, 574 dermatologists and 618 PCPs. Despite people with psoriasis highlighting a range of daily activities that are ‘very frequently’ or ‘always’ affected by their psoriasis, 37
The European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on Quality of Life (QoL) and Patient Oriented Outcomes and on Autoimmune Bullous Diseases (AIBD) collaborated on a position statement regarding the QoL instruments that could better evaluate the health-related (HR)QoL in different phases of the course of these chronic diseases. Position statements were formed and accepted by voting of all authors. The ability to use a measure that has a validated system to interpret scores and has a known minimal clinical important difference (MCID), such as the Dermatology Life Quality Index (DLQI), is an important aspect when choosing which HRQoL instrument to use. The EADV TFs encourage the use of the DLQI as a dermatology-specific instrument and Autoimmune Bullous Disease Quality of Life (ABQOL) and Treatment of Autoimmune Bullous Disease Quality of Life (TABQOL) as AIBD-specific instruments for HRQoL assessment in AIBDs. The EADV TFs encourage the use of the oral health-specific instruments Oral Health Impact Profile-14 (OHIP-14) or Chronic Oral Mucosal Disease Questionnaire (COMDQ) in AIBD patients with severe oral involvement. OHIP-14 has fewer items and that may influence the choice for practical use. The EADV TFs encourage the study, where appropriate, of family QoL of AIBD patients by using dermatology-specific family QoL instruments, such as the Family Dermatology Life Quality Index (FDLQI) or general measures such as the Family Reported Outcome Measure (FROM-16). The EADV TFs recommend that HRQoL instruments be used in randomized controlled studies of new therapeutic approaches. The EADV TFs encourage researchers and clinicians to validate and use HRQoL instruments in patients with AIBDs.