According to results of a recent literature search performed by the European Academy of Dermatology and Venereology (EADV) Task Forces (TF) on Quality of Life and Patient Oriented Outcomes (QoL and ...PO) and Acne, Rosacea and Hidradenitis Suppurativa (ARHS), most of the publications where health‐related (HR) QoL of acne patients was studied were clinical trials. Members of the EADV TF on QoL and PO decided to detect which acne treatment has the best influence on HRQoL of acne patients. A new literature search was organized to find publications on acne treatment where the HRQoL of patients was assessed as an outcome measure. From 186 papers with HRQoL assessment, 37 papers were included for further analysis. Our results revealed that oral isotretinoin had the best influence on HRQoL of acne patients. Several other treatment methods also showed good effects on the HRQoL of acne patients. Oral isotretinoin and norethindrone acetate/ethinyl estradiol, topical clindamycin phosphate/benzoyl peroxide and adapalene/benzoyl peroxide showed significantly better effect on HRQoL than placebo. There is limited number of the high‐quality studies on acne treatment where HRQoL was assessed. Dermatology‐specific and acne‐specific instruments showed much better sensitivity to successful therapeutic intervention than generic HRQoL instruments. The most frequently used HRQoL instrument was the Dermatology Life Quality Index questionnaire.
The aim of this study was to describe the many ways in which quality of life (QoL) measurement may potentially be advantageous in routine clinical dermatology practice. Thirteen members of the EADV ...Task Force on Quality of Life, eight dermatologists, three health psychologists, one epidemiologist and one pharmacoepidemiologist, independently listed all of the ways they thought this may be advantageous. A total of 108 different ways of using QoL information in clinical practice were suggested (median per participant = 8, range = 4-15), and were classified into 20 descriptive groups. These were sorted into the following five categories: inform clinical decisions, clinician-patient communication, awareness of skin disease burden, informing the consultation and clinical service administration. The wide range of potential benefits identified may not only encourage clinicians to use these measures but also highlights many areas requiring evidence to establish the true value of routine use of QoL measures.
The European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on Quality of Life (QoL) and Patient Oriented Outcomes, Melanoma and Non‐Melanoma Skin Cancer (NMSC) present a review of ...the literature and position statement on health‐related (HR) QoL assessment in skin cancer patients. A literature search was carried out to identify publications since 1980 that included information about the impact of SC on QoL. Generic, dermatology‐specific, cancer‐specific, SC‐specific, facial SC‐specific, NMSC‐specific, basal cell carcinoma‐specific and melanoma‐specific QoL questionnaires have been used to assess HRQoL in SC patients. HRQoL was assessed in the context of creation and validation of the HRQoL instruments, clinical trials, comparison of QoL in SC and other cancers, other diseases or controls, HRQoL assessment after treatment, comorbidities, behaviour modification, predictors of QoL and survival, supportive care needs, coping strategies and fear of cancer recurrence. The most widely used instruments for HRQoL assessment in SC patients are the European Organisation for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ‐C30), the Functional Assessment of Cancer Therapy‐Melanoma (FACT‐M), Skin Cancer Index (SCI), Short Form 36 Item Health Survey (SF‐36) and the Dermatology Life Quality Index (DLQI). The TFs recommend the use of the cancer‐specific EORTC QLQ‐C30, especially in late stages of disease, and the melanoma‐specific FACT‐M and SC‐specific SCI questionnaires. These instruments have been well validated and used in several studies. Other HRQoL instruments, also with good basic validation, are not currently recommended because the experience of their use is too limited. Dermatology‐specific HRQoL instruments can be used to assess the impact of skin‐related problems in SC. The TFs encourage further studies to validate HRQoL instruments for use in different stages of SC, in order to allow more detailed practical recommendations on HRQoL assessment in SC.
This paper is organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on Quality of Life (QoL) and Patient‐Oriented Outcomes and the EADV TF on acne, rosacea ...and hidradenitis suppurativa (ARHS). The purpose of this paper was to present current knowledge about QoL assessment in HS, including data on HS‐specific health‐related (HR) QoL instruments and HRQoL changes in clinical trials, and to make practical recommendations concerning the assessment of QoL in people with HS. HS results in significant quimp that is higher than in most other chronic skin diseases. HS impact in published studies was assessed predominantly (84% of studies) by the Dermatology Life Quality Index (DLQI). There is a lack of high‐quality clinical trials in HS patients where HRQoL instruments have been used as outcome measures. One double‐blind randomized placebo‐controlled trial on infliximab with low number of participants reported significantly better HRQoL improvement in the treatment group than in the placebo group. Well‐designed clinical studies in HS patients to compare different treatment methods, including surgical methods and assessing long‐term effects, are needed. Because of lack of sufficient validation, the Task Forces are not at present able to recommend existing HS‐specific HRQoL instruments for use in clinical studies. The EADV TFs recommend the dermatology‐specific DLQI questionnaire for use in HS patients. The EADV TFs encourage the further development, validation and use of other HS‐specific, dermatology‐specific and generic instruments but such use should be based on the principles presented in the previous publications of the EADV TF on QoL and Patient‐Oriented Outcomes.
The pharmaceutical approach to skin disease has been hugely successful, but despite effective drugs being available and used, there are still vast numbers of people who continue to have some level of ...persisting skin disease and continue to experience quality of life (QoL) impairment. So the question that needs to be answered, while we await further advances in our drug‐based armamentarium, is how can we improve patients’ QoL, beyond drugs? A working group was formed from members of the EADV Task Force on QoL and Patient Oriented Outcomes. Participants were asked to suggest all the ways in which they considered patients’ QoL may be improved beyond medicines. Four groups of management approaches that may improve QoL in dermatology were identified: interventions within the dermatology service (hospitalization, multidisciplinary teams, patch testing and establishing relevant allergens and education), external services (corrective make‐up, climatotherapy and balneotherapy), psychological (psychological intervention, cognitive therapy, hypnosis), lifestyle (lifestyle behavioural changes, religion and spirituality and music). The ultimate aim of therapy is to eradicate a disease in an individual and return the person’s life to normal. But until the day comes when this has been achieved for every skin disease and for every patient there will be a need to support and assist many patients in additional non‐pharmaceutical ways. These ‘adjuvant’ approaches receive too little attention while dermatologists and researchers strive for better pharmacological therapy. The different ways in which patients may benefit have been reviewed in our paper, but the reality is that most have a very poor evidence base. The research challenges that we have to meet are to identify those approaches that might be of value and to provide evidence for their optimal use. In the meantime, clinicians should consider the use of these approaches where QoL remains impaired despite optimal use of standard therapy.
Background
The first dermatology‐specific proxy health‐related quality of life (HRQoL) instrument for children 0–4 years old with skin diseases, the Infants and Toddlers Dermatology Quality of Life ...(InToDermQoL), was recently developed. In order to avoid the problem of cross‐cultural inequivalence focus groups work and pilot tests were organized simultaneously in all national centres of the project. The InToDermQoL showed good comprehensibility, clarity and acceptance.
Objective
To validate the InToDermQoL questionnaire during international field tests.
Methods
Internal consistency, test–retest reliability, convergent and discriminant validity of the InToDermQoL questionnaire were checked during international field tests.
Results
Parents of 473 children with skin diseases filled in the national language versions of the InToDermQoL questionnaire. All three age‐specific versions of the InToDermQoL questionnaire with 10, 12 and 15 items, respectively, showed high internal consistency (Cronbach's α 0.90–0.93), good test–retest reliability (correlation coefficients > 0.9), significant correlations with the most widely used atopic dermatitis‐specific proxy instrument, the Infants Dermatitis Quality of Life Index (correlation coefficients 0.68–0.79). The InToDermQoL versions for children <3 years old well correlated with the atopic dermatis severity measure Scoring of Atopic Dermatitis (correlation coefficients 0.66 and 0.86 for 10 and 12 items versions, respectively). The InToDermQoL questionnaire discriminated well among different diagnoses and disease severity levels.
Conclusion
Our field tests confirmed internal consistency, test–retest reliability, convergent and discriminant validity of the InToDermQoL questionnaire. Development and validation of the InToDermQoL questionnaire make it possible to assess dermatology‐specific aspects of HRQoL in youngest children with skin diseases. There are many reasons to assess HRQoL in dermatologic clinical practice, and we hope that our new instrument will be used internationally in paediatric dermatology for research and practical needs.
There is a need for researchers to have easy reference to the wide spectrum of different types of quality of life (QoL) instruments that can be used in atopic dermatitis (AD). Previous reviews on QoL ...in AD do not cover the full spectrum of QoL measures used in studies on AD. This study, on behalf of the European Academy of Dermatology and Venereology (EADV) Task Force on QoL, contains information on instruments available for health‐related QoL and family QoL assessment in AD including information on validation, experience of QoL assessment in AD for different purposes, peculiarities of QoL assessment in different age groups, expert analysis of available instruments including data on limitations of their use and recommendations of the Task Force.
The pandemic of COVID‐19 is a global challenge for health care, and dermatologists are not standing apart from trying to meet this challenge. The European Academy of Dermatology and Venereology ...(EADV) has collected recommendations from its Task Forces (TFs) related to COVID‐19. The Journal of the EADV has established a COVID‐19 Special Forum giving free access to related articles. The psychosocial effects of the pandemic, an increase in contact dermatitis and several other skin diseases because of stress, disinfectants and protective equipment use, especially in healthcare workers, the temporary limited access to dermatologic care, the dilemma whether or not to pause immunosuppressive therapy, and, finally, the occurrence of skin lesions in patients infected by COVID‐19 all contribute to significant quality of life (QoL) impairment. Here, we present detailed recommendations of the EADV TF on QoL and patient‐oriented outcomes on how to improve QoL in dermatologic patients during the COVID‐19 pandemic for several different groups of patients and for the general population.
Bullying in persons with skin diseases Chernyshov, P. V.; Tomas‐Aragones, L.; Manolache, L. ...
Journal of the European Academy of Dermatology and Venereology,
April 2024, 2024-Apr, 2024-04-00, 20240401, Letnik:
38, Številka:
4
Journal Article
Recenzirano
Background
There are few studies on bullying in skin diseases. Persons with skin diseases are especially prone to bullying.
Objectives
This component of the project ‘Bullying among Dermatologic ...Patients’ aimed to study the prevalence and nature of bullying in patients with skin diseases from different countries and age groups.
Methods
Data were collected from participants of international social media groups for patients with skin diseases, in‐patients and out‐patients with skin diseases, and parents of children with skin diseases from six European countries. School and university students from Poland and Ukraine were asked to answer the question: Have you been bullied because of skin problems?
Results
Bullying was reported in 1016 patients with 36 different skin diseases. Prevalence of self‐reported and parental‐reported bullying was quite heterogeneous among different countries In total, self‐reported bullying was noted by 25.6% of patients with skin diseases during face‐to‐face consultations, by 63.7% of respondents from international patients' groups and by 12.2% of school and university students. Parental‐reported bullying was detected in 34.5% of 3–4 years old children with skin diseases. The peak of bullying prevalence occurred between the ages of 13 and 15. The most prevalent forms of bullying were verbal abuse and social isolation. Physical abuse was the least often reported form of bullying. Only 33.2% of participants talked to anyone about being bullied. Negative long‐term effects of bullying were reported by 63% of respondents.
Conclusions
Skin disease‐related bullying was reported by patients in all centres of the project. The main manifestations of bullying were similar in different countries and among patients with different skin diseases. International activities aimed to decrease or prevent skin disease‐related bullying in different age groups are needed. These activities should be multidirectional and target teachers, parents of classmates and classmates of children with skin diseases, patients' parents and patients themselves.
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