Dermatological patients with itch report more stress, stigmatization experience, anxiety and depression compared to patients without itch: Results from a European multi-centre study.

BACKGROUND: Itch as the most common symptom in dermatology has been shown to be related to psychological factors such as stress, anxiety and depression. Moreover, associations were found between perceived stigmatization and itch. However, studies investigating the differences between patients with dermatoses with and without itch regarding perceived stress, stigmatization, anxiety and depression are missing. Therefore, one of the aims of the second study of the European Society for Dermatology and Psychiatry (ESDaP study II) was to investigate these relationships in a large cohort of patients with different itchy dermatoses. RESULTS: 3399 patients with 14 different itchy dermatoses were recruited at 22 centres in 17 European countries. They filled in questionnaires to assess perceived stigmatization, stress, signs of clinically relevant anxiety or depression, itch-related quality of life, the overall health status, itch duration, frequency and intensity. The most significant association between the severity of itching and the perception of stress was observed among individuals with rosacea (correlation coefficient r = 0.314). Similarly, the strongest links between itch intensity and experiences of stigmatization, anxiety, and depression were found in patients with seborrheic dermatitis (correlation coefficients r = 0.317, r = 0.356, and r = 0.400, respectively). Utilizing a stepwise linear regression analysis, it was determined that within the entire patient cohort, 9.3% of the variation in itch intensity could be accounted for by factors including gender, levels of anxiety, depression, and perceived stigmatization. Females and individuals with elevated anxiety, depression, and perceived stigmatization scores reported more pronounced itch intensities compared to those with contrary attributes. CONCLUSION: This study underscores the connection between experiencing itch and its intensity and the psychological strain it places on individuals. Consequently, psychological interventions should encompass both addressing the itch itself and the interconnected psychological factors. In specific cases, it becomes imperative for dermatologists to direct individuals towards suitable healthcare resources to undergo further psychological assessment.

Quality of life measurement in teledermatology. Position statement of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes and Teledermatology.

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.

Bullying in persons with skin diseases.

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.

Quality of life measurement in rosacea. Position statement of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa.

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.

Quality of life assessment in core outcome sets: A position statement of the EADV Task Force on Quality of Life and Patient Oriented Outcomes.

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.

Quality of life measurement in alopecia areata. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes.

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.

Methods to improve quality of life, beyond medicines. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life 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.

Impacto psicosocial en adultos con dermatitis atópica: estudio cualitativo / Psychosocial Impact of Atopic Dermatitis in Adults: A Qualitative Study

ANTECEDENTES Y OBJETIVO: La dermatitis atópica afecta a la calidad de vida del paciente de muchas maneras. Por tanto, es importante analizar los efectos que la enfermedad produce en la vida del paciente al objeto de definir mejor las necesidades de atención de los pacientes adultos con dermatitis atópica. PACIENTES Y MÉTODOS: Se realizaron entrevistas a 14 pacientes adultos con dermatitis atópica. Las entrevistas cualitativas fueron semiestructuradas apoyadas en un guion simple, lo que permitió una entrevista completa y flexible para un mayor nivel de profundidad y riqueza de datos. RESULTADOS: Se identificaron 6 esferas afectadas de la vida del paciente con dermatitis atópica: económica, laboral, personal, psicosocial, clínica y relacional. Se destaca que la dermatitis atópica tiene un gran impacto psicosocial en el paciente adulto, ya que altera las relaciones interpersonales, genera rechazo, estigmatización y aislamiento social, limita al paciente en diversas áreas y actividades de su vida cotidiana o altera el sueño, entre otros. Preocupan mucho el aspecto visible, el ciclo picor-rascamiento, la falta de concienciación y desconocimiento de la enfermedad, la ausencia de una solución definitiva entre los tratamientos y los efectos secundarios de algunos de ellos. CONCLUSIONES: La calidad de vida de los pacientes con dermatitis atópica se ve afectada negativamente y se hace necesaria una intervención profesional desde un abordaje multidisciplinar holístico que intente mitigar el impacto negativo de la enfermedad

BACKGROUND AND OBJECTIVE: Atopic dermatitis affects a patient's quality of life in many ways. Analysis of the effects of this disease on the lives of adult patients is therefore important for the purpose of better defining their care needs. PATIENTS AND METHODS: We interviewed 14 adult patients with atopic dermatitis in this qualitative study. The interviews were semistructured according to a simple outline to allow for completeness and flexibility and afford greater depth and richness of information. RESULTS: Atopic dermatitis affected the patients’ lives in 6 spheres of activity: economic, occupational, personal, psychosocial, clinical, and relational. A clear finding was that the disease has a considerable psychosocial effect on adult patients, altering their interpersonal relationships and leading to rejection, stigmatization, and social isolation. It limits the patient in various spheres of life and in activities of daily living, causing sleep alterations among other effects. The patients were very concerned about appearance, the itch–scratch cycle, poor understanding and lack of awareness of their disease, the absence of a definitive treatment, and the adverse effects of some treatments. CONCLUSIONS: The quality of life of adults with atopic dermatitis is negatively affected. This disease requires a professional, holistic, multidisciplinary management approach that attempts to mitigate the adverse effects

Quality of life measurement in occupational skin diseases. Position paper of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes and Occupational Skin Disease.

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.

Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes on quality of life issues in dermatologic patients during the COVID-19 pandemic.

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.

Psychosocial Impact of Atopic Dermatitis in Adults: A Qualitative Study. / Impacto psicosocial en adultos con dermatitis atópica: estudio cualitativo.

BACKGROUND AND OBJECTIVE: Atopic dermatitis affects a patient's quality of life in many ways. Analysis of the effects of this disease on the lives of adult patients is therefore important for the purpose of better defining their care needs. PATIENTS AND METHODS: We interviewed 14 adult patients with atopic dermatitis in this qualitative study. The interviews were semistructured according to a simple outline to allow for completeness and flexibility and afford greater depth and richness of information. RESULTS: Atopic dermatitis affected the patients' lives in 6 spheres of activity: economic, occupational, personal, psychosocial, clinical, and relational. A clear finding was that the disease has a considerable psychosocial effect on adult patients, altering their interpersonal relationships and leading to rejection, stigmatization, and social isolation. It limits the patient in various spheres of life and in activities of daily living, causing sleep alterations among other effects. The patients were very concerned about appearance, the itch-scratch cycle, poor understanding and lack of awareness of their disease, the absence of a definitive treatment, and the adverse effects of some treatments. CONCLUSIONS: The quality of life of adults with atopic dermatitis is negatively affected. This disease requires a professional, holistic, multidisciplinary management approach that attempts to mitigate the adverse effects.

Body dysmorphic disorder in patients with acne: a multicentre study.

BACKGROUND AND OBJECTIVE: Body dysmorphic disorder (BDD) is a mental disorder that is difficult to diagnose, causes a lot of suffering and is more prevalent in dermatology patients than in the general population. Our objective was to screen for possible cases of BDD in patients with acne and to determine the prevalence according to DSM-IV and DSM-5 criteria, as well as to analyse the relationship between dermatological and sociodemographic variables. METHODS: A total of 245 patients diagnosed with acne in 11 dermatological centres in Spain were included in the study by members of the Aragon Psychodermatology Research Group and Spanish Research Group of Psychiatric Dermatology. We used the Body Dysmorphic Disorder Questionnaire (BDDQ) as a screening tool. RESULTS: In our sample, we obtained a prevalence for BDD of 10.6% (95% CI: 7.6-13.6%). The prevalence was the same with DSM-IV or DSM-5 criteria. Possible cases of BDD were predominantly women (P = 0.021), and 56% had non-inflammatory lesions vs. 30% of negative patients (P = 0.002). Positive patients as possible cases of BDD spent more than two hours on average a day worrying about their appearance. Most people only worried about one part of their body (86%), and in 95% of the cases, the part of their body that worried them was the face. The three most frequent compulsive behaviours in patients who screened positive for BDD were mirror checking (90.7%), camouflaging (79.1%) and using make-up (72.1%). CONCLUSIONS: As a consequence of the high prevalence of possible cases of BDD in patients with acne observed in our study, there is a need for dermatologists to screen for BDD so that they can be referred to a mental health unit to confirm the diagnosis and be offered treatment to reduce the progression of psychosocial deterioration and the development of comorbid disorders.

'The psychosocial burden of alopecia areata and androgenetica': a cross-sectional multicentre study among dermatological out-patients in 13 European countries.

BACKGROUND: Hair diseases play an important burden on patients' lives, causing significant emotional and psychosocial distress. However, the impairment due to different hair conditions, such as alopecia areata (AA) and androgenetic alopecia (AGA), has rarely been compared. OBJECTIVE: The aim of this study was to assess the psychological burden of subgroups of patients with different hair diseases and to compare them to a healthy population. METHODS: In this study, we analysed a subgroup of patients with hair diseases from patients of a large multicentre study including 3635 dermatological patients and 1359 controls from 13 European countries. In the subgroup of patients with hair diseases, we analysed the socio-demographic characteristics, the stress level, and the impact of hair diseases on quality of life (QoL), anxiety, and depression and we compared them among patients with AA, AGA and healthy controls. RESULTS: The study population included 115 patients (77% women, 23% men) with hair diseases, 37 of whom with AA and 20 with AGA. Patients with hair diseases had a lower education level than healthy controls (medium educational level: 43% vs. 28%). Overall, 41% of the patients reported stressful life events during the last 6 months compared with 31% of the controls. Patients with the same age, sex, depression level and comorbidities had a worse QoL when suffering from AA than from AGA (Mean Dermatology Life Quality Index score: 5.8 vs. 2.5). CONCLUSION: Patients with hair diseases are more anxious, depressed and have a lower QoL than controls.

Desarrollo y validación preliminar del instrumento HSQoL-24 para evaluar calidad de vida en pacientes con hidradenitis supurativa / Development and Preliminary Validation of the HSQoL-24 Tool to Assess Quality of Life in Patients With Hidradenitis Suppurativa

Introducción y objetivos: La hidradenitis supurativa (HS) es una enfermedad inflamatoria crónica de la piel que influencia negativamente la calidad de vida. En la actualidad no existen escalas en español que la evalúen. El objetivo del presente estudio fue desarrollar y validar un cuestionario específico para evaluar la calidad de vida en pacientes con HS. Material y métodos: Se desarrolló un estudio multicéntrico en España entre 2016 y 2017 para elaborar un cuestionario. Para ello se consideró tanto el marco conceptual como el conocimiento de la situación del paciente mediante la revisión de la bibliografía, reuniones de profesionales de diferentes áreas y entrevistas con pacientes. El cuestionario resultante se pasó a un grupo de 30 pacientes con 30 ± 10 días de intervalo entre uno y otro. Resultados: El análisis de fiabilidad muestra una buena consistencia interna y reproductibilidad con puntuación alfa de Cronbach de 0,920 (test) y 0,917 (retest) y coeficiente de correlación intraclase con DLQI y Skindex-29 de 0,698 IC 95% (0,456-0,844) y 0,900 IC 95% (0,801-0,951) respectivamente. Se establecieron puntos de corte para su uso y se comprobó que el instrumento es sensible al cambio. Conclusiones: El cuestionario HSQoL-24 es la primera prueba autoadministrada específica para evaluar la calidad de vida en HS en español. Sencillo de usar y puntuar por los profesionales. Este estudio demuestra que el instrumento es fiable, válido y sensible al cambio, pendiente de realizar estudio confirmatorio con una muestra mayor con 100 pacientes con HS

Introduction and objectives: Hidradenitis suppurativa (HS) is a chronic inflammatory disease of the skin with a negative impact on quality of life. Up to now, there are no disease specific instruments in Spanish to assess quality of life in HS. The objective of this study was to develop and validate a questionnaire to evaluate the quality of life in patients with HS. Material and methods: A multicentre study was carried out in Spain between 2016 and 2017 to develop the questionnaire. Both the conceptual framework and understanding of the patient's situation were considered through a review of the literature, consensus of professionals from different related health areas, and in-depth interviews with patients. The resulting questionnaire was passed to a group of 30 patients with 30±10 days of interval between both assessments. Results: The reliability analysis shows a good internal consistency and reproducibility with Cronbach's alpha score of 0.920 (test) and 0.917 (retest) and intraclass correlation coefficient with DLQI and Skindex-29 of 0.698 IC 95% (0.456-0.844) and 0.900 IC 95% (0.801-0.951) respectively. Cut-off points were established for its use and the instrument was found to be sensitive to change. Conclusions: The HSQoL-24 is the first disease-specific self-administered instrument to assess quality of life in patients with HS in Spanish. It is user friendly, and easy to score. This study shows that the instrument is reliable, valid and sensitive to change, pending confirmatory study with a larger sample of 100 patients with HS

Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient-Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa.

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.

Quality of life measurement in skin cancer patients: literature review and position paper of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes, Melanoma and Non-Melanoma Skin Cancer.

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.

Development and Preliminary Validation of the HSQoL-24 Tool to Assess Quality of Life in Patients With Hidradenitis Suppurativa. / Desarrollo y validación preliminar del instrumento HSQoL-24 para evaluar calidad de vida en pacientes con hidradenitis supurativa.

INTRODUCTION AND OBJECTIVES: Hidradenitis suppurativa (HS) is a chronic inflammatory disease of the skin with a negative impact on quality of life. Up to now, there are no disease specific instruments in Spanish to assess quality of life in HS. The objective of this study was to develop and validate a questionnaire to evaluate the quality of life in patients with HS. MATERIAL AND METHODS: A multicentre study was carried out in Spain between 2016 and 2017 to develop the questionnaire. Both the conceptual framework and understanding of the patient's situation were considered through a review of the literature, consensus of professionals from different related health areas, and in-depth interviews with patients. The resulting questionnaire was passed to a group of 30 patients with 30±10 days of interval between both assessments. RESULTS: The reliability analysis shows a good internal consistency and reproducibility with Cronbach's alpha score of 0.920 (test) and 0.917 (retest) and intraclass correlation coefficient with DLQI and Skindex-29 of 0.698 IC 95% (0.456-0.844) and 0.900 IC 95% (0.801-0.951) respectively. Cut-off points were established for its use and the instrument was found to be sensitive to change. CONCLUSIONS: The HSQoL-24 is the first disease-specific self-administered instrument to assess quality of life in patients with HS in Spanish. It is user friendly, and easy to score. This study shows that the instrument is reliable, valid and sensitive to change, pending confirmatory study with a larger sample of 100 patients with HS.

Detección de trastorno dismórfico corporal en pacientes con acné: estudio piloto / Screening for Body Dysmorphic Disorders in Acne Patients: A Pilot Study

Introducción: El trastorno dismórfico corporal (TDC) es una enfermedad mental difícil de diagnosticar; puede causar una gran cantidad de sufrimiento, y el tratamiento a menudo es complejo y desafiante. Material y método: La población de estudio comprendía 81 pacientes ambulatorios dermatológicos consecutivos que cumplían los criterios de inclusión para la participación. Fueron tratados en hospitales en zonas urbanas (Zaragoza) y rurales (Alcañiz). Es un estudio piloto prospectivo y observacional. Se utilizaron como instrumentos de evaluación: a) La escala de gradación del acné de Cook y b) El Cuestionario de Trastorno Dismórfico Corporal (Body Dysmorphic Disorder Questionnaire, BDDQ) (traducción al español). Los posibles casos de TDC se identificaron mediante 2 criterios: 1) Un resultado positivo en el BDDQ (4 puntos positivos y una pregunta de exclusión negativa); y 2) Escala de gradación del acné de Cook que reflejó lesiones no perceptibles/leves (los criterios más estrictos) o lesiones moderadas (criterios menos estrictos) Resultados: El rango de edad de los pacientes era de 13 a 43 años. La edad promedio fue 19 con una desviación estándar de 6,2. De los 81 participantes, el 54,3% eran mujeres y el 45,7% eran hombres. El 61,7% vivía en el área rural cubierta por el hospital de Alcañiz y el 38,3% era del área urbana atendida por el Hospital Universitario de Zaragoza. Cuando se aplicaron criterios más restrictivos con respecto a la gravedad de la afección (solo los pacientes con acné leve), el proceso de detección de BDDQ resultó en una tasa de prevalencia de TDC del 8,6% (7 pacientes); si los criterios fueron menos restrictivos (incluidos los pacientes con lesiones moderadas), la tasa fue del 14,8% (12 pacientes). Discusión: Vale la pena recordar que los pacientes con TDC que participaron en este estudio pasan un promedio de 2 h al día pensando y preocupándose por su apariencia. Este hecho es un recordatorio de la importancia de diagnosticar y tratar correctamente el TDC ya que la afección claramente tiene un impacto serio y negativo en las vidas de los afectados

Introduction: Body dysmorphic disorder (BDD) is a mental health condition that is difficult to diagnose; it can cause a great deal of suffering, and treatment is often complex and challenging. Material and method: The study population comprised 81 consecutive dermatology out-patients who met the inclusion criteria for participation. Participants were treated at hospitals in both urban (Zaragoza) and rural areas (Alcañiz). The project was based on a prospective and observational pilot study. Assessment instruments used: Cook's Acne Grading Scale and Body Dysmorphic Disorder Questionnaire (BDDQ) (Spanish translation). Possible cases of BDD were identified by means of 2 criteria: 1) A positive result in the BDDQ (4 positive points and a negative exclusion question); and, 2) A Cook's Acne Grading Score that reflected non-noticeable/mild lesions (the most stringent criteria) or moderate lesions (least stringent criteria). Results: The age range of the patients was from 13 to 43 years old. The average age was 19 with a standard deviation of 6.2. Of the 81 participants, 54.3% were women. 61.7% were seen in a rural hospital (Alcañiz Hospital) and 38.3% in an urban one (University Hospital of Zaragoza). When more restrictive criteria regarding the seriousness of the condition were applied (only patients with mild acne), the BDDQ screening resulted in a positive BDD prevalence rate of 8.6% (7 patients); if the criteria were less restrictive (including patients with moderate lesions), the rate was 14.8% (12 patients)