RESUMEN
Many events, including the COVID-19 pandemic, have accelerated the implementation of teledermatology pathways within dermatology departments and across healthcare organizations. Quality of Life (QoL) assessment in dermatology is also a rapidly developing field with a gradual shift from theory to practice. The purpose of this paper organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and patient-oriented outcomes and the EADV TF on teledermatology is to present current knowledge about QoL assessment during the use of teledermatology approaches, including data on health-related (HR) QoL instruments used in teledermatology, comparison of influence of different treatment methods on HRQoL after face-to-face and teledermatology consultations and to make practical recommendations concerning the assessment of QoL in teledermatology. The EADV TFs made the following position statements: HRQoL assessment may be an important part in most of teledermatology activities; HRQoL assessment may be easily and effectively performed during teledermatology consultations. It is especially important to monitor HRQoL of patients with chronic skin diseases during lockdowns or in areas where it is difficult to reach a hospital for face-to-face consultation; regular assessment of HRQoL of patients with skin diseases during teledermatology consultations may help to monitor therapy efficacy and visualize individual patient's needs; we recommend the use of the DLQI in teledermatology, including the use of the DLQI app which is available in seven languages; it is important to develop apps for dermatology-specific HRQoL instruments for use in children (for example the CDLQI and InToDermQoL) and for disease-specific instruments.
Asunto(s)
Dermatología , Enfermedades de la Piel , Venereología , Niño , Humanos , Calidad de Vida , Dermatología/métodos , Pandemias , Enfermedades de la Piel/diagnóstico , Enfermedades de la Piel/terapiaRESUMEN
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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Acoso Escolar , Enfermedades de la Piel , Niño , Humanos , Adolescente , Preescolar , Agresión , Europa (Continente) , Autoinforme , Enfermedades de la Piel/epidemiologíaRESUMEN
The European Academy of Dermatology and Venereology (EADV) Task Forces on quality of life (QoL) and patient-oriented outcomes and on urticaria and angioedema recommendations for the assessment of Health-related (HR) QoL in all patients with urticaria in research and practice are as follows: to use the DLQI for adults and the CDLQI for children as dermatology-specific and the CU-Q2oL as a disease-specific HRQoL instruments in urticaria; to use generic instruments to provide comparison of data on urticaria with non-dermatologic diseases, or to compare with healthy volunteers or the general population; to select validated HRQoL instruments with appropriate age limits; to present exact numeric data for HRQoL results; correct title of any HRQoL instrument should be used, along with its correct abbreviation and the reference to its original publication, where possible. The EADV TFs discourage the use of non-validated HRQoL instruments and modified HRQoL instruments that have not undergone standard validation.
RESUMEN
The European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on Quality of Life (QoL) and Patient-Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa (ARHS) do not recommend the use of any generic instrument as a single method of Health Related (HR) QoL assessment in rosacea, except when comparing quimp (quality of life impairment) in rosacea patients with that in other non-dermatologic skin diseases and/or healthy controls. The EADV TFs on QoL and Patient-Oriented Outcomes and ARHS recommend the use of the dermatology-specific HRQoL instrument the Dermatology Life Quality Index (DLQI) and the rosacea-specific HRQoL instrument RosaQoL in rosacea patients. The DLQI minimal clinically important difference may be used as a marker of clinical efficacy of the treatment and DLQI score banding of 0 or 1 corresponding to no effect on patients' HRQoL could be an important treatment goal. This information may be added to consensuses and guidelines for rosacea.
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Acné Vulgar , Dermatología , Hidradenitis Supurativa , Rosácea , Venereología , Humanos , Hidradenitis Supurativa/terapia , Calidad de Vida , Rosácea/terapiaRESUMEN
Core outcome sets (COSs) are an agreed standardized collection of outcomes that should be measured and reported in all clinical trials for a specific clinical condition. Tsekhe aim of our position paper by the European Academy of Dermatology and Venereology (EADV) Task Force on Quality of Life and Patient Oriented Outcomes was to identify the challenges and Patient Oriented Outcomes advantages in the development of COSs within dermatological QoL research. Twelve EADV Task Force multidisciplinary team members presented a total of 101 items (51 advantages and 50 disadvantages). All participants considered that COS are beneficial for comparison between different studies, treatments, dermatological diseases, geographical location and ethnicities. In conclusion, the EADV Task Force on Quality of Life and Patient Oriented Outcomes has recognized the primacy of advantages of COS and deliberated that the disadvantages in COS are related to development process and use of COS.
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Venereología , Comités Consultivos , Humanos , Evaluación de Resultado en la Atención de Salud , Calidad de VidaRESUMEN
New treatment options may lead to an increased interest in using reliable and sensitive instruments to assess health-related quality of life in people with alopecia areata (AA). The purpose of this paper is to present current knowledge about quality of life assessment in AA. The dermatology-specific Dermatology Life Quality Index (DLQI) was the most widely reported health-related quality of life instrument used in AA. Three AA-specific (Alopecia Areata Symptom Impact Scale, Alopecia Areata Quality of Life Index and Alopecia Areata Patients' Quality of Life) and three hair disease-specific instruments (Hairdex, Scalpdex and 'hair-specific Skindex-29') were identified with a range of content and validation characteristics: there is little evidence yet of the actual use of these measures in AA. Scalpdex is the best-validated hair disease-specific instrument. Further extensive validation is needed for all of the AA-specific instruments. The European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes recommends the use of the dermatology-specific DLQI questionnaire, hair disease-specific Scalpdex and the alopecia areata-specific instruments the Alopecia Areata Symptom Impact Scale or Alopecia Areata Quality of Life Index, despite the limited experience of their use. We hope that new treatment methods will be able to improve both clinical signs and health-related quality of life in patients with AA. In order to assess the outcomes of trials on these new treatment methods, it would be helpful when further development and validation of AA-specific instruments is being encouraged and also conducted.
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Alopecia Areata , Dermatología , Venereología , Cabello , Humanos , Calidad de VidaRESUMEN
The European Academy of Dermatology and Venereology (EADV) has started the 'Healthy Skin @ Work' campaign aimed to raise awareness among the public and EU authorities on the frequency and impact of occupational skin diseases (OSDs). The EADV Task Forces (TFs) on Quality of Life and Patient Oriented Outcomes (QoL/PO) and on OSD present their mutual position statement on QoL assessment in OSDs. The EADV TFs recommend the use of the DLQI as a dermatology-specific instrument and SF-36 as a generic instrument in health-related (HR) QoL studies on OSDs. The OSD-specific questionnaire, LIOD, is not recommended for general use in its present form because of its three months recall period. The EADV TFs discourage the use of non-validated and of non-validated modifications of previously validated HRQoL instruments. The EADV TFs wish to encourage research into: the HRQoL impact of OSDs other than occupational contact dermatitis and hand eczema; comparisons between the effects of different treatments and other interventions on HRQoL in OSDs; and into the HRQoL impairment of patients with OSDs from different countries, and with different provoking factors, to predict if the results of successful therapeutic and educational interventions may be generalized across countries and between occupations.
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Dermatología , Venereología , Comités Consultivos , Humanos , Calidad de Vida , Encuestas y CuestionariosRESUMEN
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.
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Infecciones por Coronavirus/epidemiología , Dermatología/organización & administración , Neumonía Viral/epidemiología , Calidad de Vida , Enfermedades de la Piel/etiología , Enfermedades de la Piel/terapia , Venereología/organización & administración , Comités Consultivos , Betacoronavirus , COVID-19 , Infecciones por Coronavirus/psicología , Europa (Continente)/epidemiología , Humanos , Control de Infecciones/organización & administración , Transmisión de Enfermedad Infecciosa de Paciente a Profesional/prevención & control , Pandemias , Publicaciones Periódicas como Asunto , Neumonía Viral/psicología , SARS-CoV-2 , Enfermedades de la Piel/psicología , Sociedades MédicasRESUMEN
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.
Asunto(s)
Padres , Calidad de Vida , Enfermedades de la Piel , Encuestas y Cuestionarios , Preescolar , Dermatología , Europa (Continente) , Femenino , Humanos , Lactante , Recién Nacido , Lenguaje , Masculino , Apoderado , Psicometría , Reproducibilidad de los Resultados , Índice de Severidad de la Enfermedad , Enfermedades de la Piel/complicacionesRESUMEN
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.
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Acné Vulgar/psicología , Acné Vulgar/terapia , Hidradenitis Supurativa/psicología , Hidradenitis Supurativa/terapia , Rosácea/psicología , Rosácea/terapia , Comités Consultivos , Europa (Continente) , Humanos , Medición de Resultados Informados por el Paciente , Guías de Práctica Clínica como Asunto , Calidad de Vida , Índice de Severidad de la EnfermedadRESUMEN
BACKGROUND: Until now, there was no validated dermatology-specific health-related quality of life (HRQoL) instrument to be used in youngest patients. OBJECTIVE: To create dermatology-specific proxy instrument for HRQoL assessment in children from birth to 4 years. METHODS: International focus groups, item selection and pilot tests were utilized. In order to avoid the problem of cross-cultural inequivalence, focus group work and pilot tests were planned simultaneously in all national centres of the project. Comprehensibility, clarity, acceptance and internal consistency of new instrument were checked. RESULTS: The title 'Infants and Toddlers Dermatology Quality of Life' was chosen for our new instrument with the proposed acronym 'InToDermQoL'. Focus group work was completed in seven national centres (Croatia, Germany, Greece, Malta, Poland, Romania and Ukraine). A total of 170 families of children with different skin diseases were interviewed, and a pilot version of the instrument was created. Centres from France, Denmark and Spain have joined the project at this stage. Parents of 125 children with skin diseases filled in the pilot versions of the instrument. Good comprehensibility, clarity, acceptance and internal consistency of the InToDermQoL were confirmed. The pilot test results showed that the InToDermQoL questionnaire well differentiates severity-dependent differences. It was also checked and confirmed during the pilot test that no significant information was missed in the questionnaire. Three age-specific versions of the InToDermQoL questionnaire with 10, 12 and 15 items, respectively, were approved for field tests. CONCLUSION: The pilot test results showed that the InToDermQoL questionnaire has good comprehensibility, clarity, acceptance and internal consistency and well differentiates severity-dependent differences. Further validation of the InToDermQoL during international field test will be performed.
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Calidad de Vida , Enfermedades de la Piel , Encuestas y Cuestionarios , Preescolar , Comprensión , Competencia Cultural , Europa (Continente) , Grupos Focales , Humanos , Lactante , Recién Nacido , Proyectos Piloto , Apoderado , Índice de Severidad de la Enfermedad , Enfermedades de la Piel/complicacionesRESUMEN
BACKGROUND: Parental education is important in managing childhood chronic diseases. OBJECTIVES: The aim of the study was to evaluate the effects of a short-term structured educational programme for parents of children with moderate to severe atopic dermatitis ( AD), aged 3 months to 7 years, on the clinical course of AD, parental stress, anxiety and the quality of family life. METHODS: One hundred thirty-four parents with AD children were recruited in a randomized controlled clinical trial at the Outpatient Unit of Pediatric Dermatology, Children's Hospital in Zagreb. The primary outcome was change in the severity of eczema measured using SCORing AD (SCORAD) and Patient Oriented (PO) SCORAD index, changes of symptom scores for pruritus and sleep disturbance. Secondary outcomes included change in stress level according to the Perceived Stress Scale (PSS); change in anxiety level according to State Trait Anxiety Inventory (STAI) and change in the quality of family life according to the Croatian version of the Family Dermatology Life Quality Index (FDLQI). RESULTS: Participants in the intervention group had a significantly lower SCORAD (P = 0.000), PO SCORAD (P = 0.000) index, pruritus (P = 0.000), sleep disturbance (P = 0.001), level of perceived stress (P = 0.024) and anxiety as a state (P = 0.42) than those in the control group at the second visit. After the educational programme, participants in the intervention group had a significantly lower impact of AD on the total quality of family life (P = 0.006). We found a statistically significant difference between the two groups with respect to additional education received between the visits. The control group had acquired significantly more additional education (P = 0.007). There was no significant difference between groups in the amount of corticosteroid used. CONCLUSION: Our structured educational programme had a positive effect on AD severity, quality of family life, parental stress and anxiety.
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Dermatitis Atópica/terapia , Padres/educación , Adulto , Niño , Dermatitis Atópica/fisiopatología , Femenino , Humanos , Masculino , Adulto JovenAsunto(s)
Melanoma/diagnóstico , Neoplasias Cutáneas/diagnóstico , Adolescente , Niño , Preescolar , Femenino , Humanos , Masculino , Estudios RetrospectivosRESUMEN
Prostaglandins, local hormones, are produced by almost every tissue and organ in the body (except for erythrocytes). They are active at the site of their production or next to the cells that secrete them. Prostaglandins play an important biological role, because they are involved in many physiological and pathological processes. Some of their effects are still unknown. They are involved in inflammatory process of the skin. They have been implicated as possible mediators of contact allergic dermatitis and among others, act in immune response. The use of prostaglandin in dermatology is still experimental. In the near future, they might be use in therapy for systemic scleroderma, aberration of extremity circulation with ulcers, vasculitis, etc. An overview is provided of prostaglandins in dermatology.
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Prostaglandinas/fisiología , Prostaglandinas/uso terapéutico , Enfermedades de la Piel/tratamiento farmacológico , Enfermedades de la Piel/fisiopatología , HumanosRESUMEN
A case of widespread tinea due to Trichophyton mentagrophytes is described. A healthy 75-year-old woman presented with 134 typical tinea corporis and faciei lesions previously treated with topical steroids. The diagnosis was based on direct mycologic examination and culture. The treatment with oral administration of terbinafine for four weeks and topical application of clotrimazole resulted in complete clinical resolution of the lesions