Self-Inflicted Lesions in Dermatology: A Management and TherapeuticApproach - A Position Paper From the European Society for Derma-tology and Psychiatry.

The classification of self-inflicted skin lesions proposed by the European Society for Dermatology and Psychiatry (ESDaP) group generated questions with regard to specific treatments that could be recommended for such cases. The therapeutic guidelines in the current paper integrate new psychotherapies and psychotropic drugs without forgetting the most important relational characteristics required for dealing with people with these disorders. The management of self-inflicted skin lesions necessitates empathy and a doctor-patient relationship based on trust and confidence. Cognitive behavioural therapy and/or psychodynamic and psychoanalytic psychotherapy (alone, or combined with the careful use of psychotropic drugs) seem to achieve the best results in the most difficult cases. Relatively new therapeutic techniques, such as habit reversal and mentalization-based psychotherapy, may be beneficial in the treatment of skin picking syndromes.

Psoriasis - The Life Course Approach.

Over the last decades, Life Course Research (LCR), predominantly the domain of sociology, has been increasingly applied in health research, as Life Course Epidemiology (LCE). The latter is concerned with disease patterns over time, accumulation of exposures over time, critical time periods and patterns of risk. We argue that concepts from LCR and LCE could be widely applied in dermatology, in general, and, more precisely, in the study of chronic inflammatory skin diseases, e.g. atopic eczema and psoriasis. The life course approach can generally be applied in two different ways. It may be used in the more traditional manner, in which the disease and its patterns over time are examined as the outcome vari-able. Conversely, it can examine life course as the outcome variable, which is dependent on the disease course, the treatments administered, and other physical or psychosocial environmental exposures. In dermatology, this second application of the LCR concepts is both promising and relevant because of the notable impact of chronic skin diseases on the patients' quality of life. In particular, we argue how LCR may be conducive to a better understanding of the concept of 'Cumulative Life Course Impairment', which is increasingly gaining acceptance. This approach helps identifying not only individuals at risk and particularly vulnerable patients but also critical periods for optimising interventions in order to avoid life course impairment. It also may facilitate more appropriate treatment decisions in clinical practice.

Patient-Reported Outcome Measurement in Clinical Dermatological Practice: Relevance and Feasibility of a Web-Based Portal.

BACKGROUND/AIMS: Patient-reported outcomes (PROs) are increasingly considered important. We developed a web-based application to electronically assess PROs in routine dermatological practice. We assessed (1) the relevance of PRO measurement according to health care providers and patients, (2) the feasibility of our application in routine practice according to health care providers, supporting staff and patients, and (3) barriers/facilitators for implementation according to health care providers and supporting staff. METHODS: Health care providers, supporting staff and patients completed study-specific questionnaires. Also, website statistics were analysed. RESULTS: 3/6 clinics participated, including 9 professionals and 80 patients. Both health care providers and patients rated PRO measurement as relevant. However, implementation was only moderately feasible. Time constraints and logistical problems were mentioned as barriers, and motivated patients and supportive staff as facilitators. CONCLUSION: Electronic PRO assessment in routine practice is not self-evident. Adjustments in logistics are recommended to optimize implementation, using a plan-do-study-act approach.

A Web-based, educational, quality-of-life intervention for patients with a chronic skin disease: feasibility and acceptance in routine dermatological practice.

Chronic skin diseases have a negative impact on patients' health-related quality of life (HRQoL). Patient education might contribute to HRQoL improvement. We developed a web-based, educational, HRQoL intervention for patients with a chronic skin disease. We aimed to assess 1) the feasibility of implementing the intervention in routine dermatological practice and patients' daily life, and 2) the acceptance of the intervention by health care providers and patients. Additionally, we aimed to create a patient user profile. We conducted an observational pilot study at 6 dermatological centres, including 105 outpatients. Implementation in routine practice was feasible and acceptable to health care providers. However, implementation in patients' daily life was found not to be entirely feasible. Perceived relevance by patients was low, though patients rated the intervention as convenient and attractive. No univocal user profile was found. Suggestions for improvements of the intervention, e.g. tailoring and adding blended learning components, are discussed.

Health-related quality of life in patients with cutaneous rosacea: a systematic review.

Health-related quality of life (HRQoL) of rosacea patients is a relevant outcome measure in research and clinical practice. A review of the literature was systematically carried out regarding levels of HRQoL of patients with rosacea, including associations between HRQoL scores, demographic and clinical characteristics. Searches were performed in Cochrane, PubMed, EMBASE, PsycINFO, CINAHL and LILACS. HRQoL studies in patients with cutaneous rosacea, using validated HRQoL instruments, published between 1991 and 2014, were included. Data extraction was performed independently by 2 authors. Study design, demographics, clinical characteristics and HRQoL scores were summarized per HRQoL questionnaire. Associations between HRQoL, demographic and clinical characteristics were explored. Out of 984 references, 12 studies were included. Three HRQoL instruments were used: Short Form-36 (SF-36), Dermatology Life Questionnaire Index (DLQI) and Rosacea Quality of Life Index (RosaQoL). Because of the heterogeneity of the included studies, data synthesis was hardly feasible. All studies reported a negative impact on HRQoL, which appeared to be associated with disease severity and age. Results regarding the association with sex and subtype were mixed. With regard to the clinical relevance of HRQoL scores of rosacea patients, it seems that rosacea has a small to moderate effect on HRQoL.

Self-inflicted lesions in dermatology: terminology and classification--a position paper from the European Society for Dermatology and Psychiatry (ESDaP).

The terminology, classification, diagnosis and treatment of self-inflicted dermatological lesions are subjects of open debate. The present study is the result of various meetings of a task force of dermatologists, psychiatrists and psychologists, all active in the field of psychodermatology, aimed at clarifying the terminology related to these disorders. A flow chart and glossary of terms and definitions are presented to facilitate the classification and management of self-inflicted skin lesions. Several terms are critically discussed, including: malingering; factitious disorders; Münchausen's syndrome; simulation; pathomimicry; skin picking syndrome and related skin damaging disorders; compulsive and impulsive skin picking; impulse control disorders; obsessive compulsive spectrum disorders; trichotillomania; dermatitis artefacta; factitial dermatitis; acne excoriée; and neurotic and psychogenic excoriations. Self-inflicted skin lesions are often correlated with mental disorders and/or patho-logical behaviours, thus it is important for dermatologists to become as familiar as possible with the psychiatric and psychological aspects underlying these lesions.

The efficacy of a health-related quality-of-life intervention during 48 weeks of biologic treatment of patients with moderate to severe psoriasis: study protocol for a multicenter randomized controlled trial.

BACKGROUND: Interest in health-related quality of life (HRQoL) outcome research in dermatology is increasing, especially in the systemic treatment of psoriasis with biologic agents. In other specialties, such as oncology, the application of a HRQoL intervention is considered to be an aid for monitoring disease and treatment over time, for the communication with the patient, and for improving treatment outcome. However, in dermatology practice, the application of this intervention is relatively new. Moreover, evidence on the effectiveness of a HRQoL intervention in dermatology is missing. It is hypothesized that the application of a HRQoL intervention in dermatology practice will have a positive impact on patients' HRQoL as well as on doctor-patient communication. METHODS/DESIGN: In a prospective multicenter cluster randomized controlled trial, patients diagnosed with moderate to severe psoriasis who receive biologic treatment, will be followed for 48 weeks. The study sites, and not the patients, will be randomly allocated via a computer-based randomization system to either the intervention (treatment with etanercept and standardized HRQoL assessment and communication) or the control group (treatment with etanercept alone). The HRQoL intervention will include 1) the electronic assessment of the Skindex-29, a well-studied dermatology-specific HRQoL questionnaire, and 2) the communication of the resulting Skindex-29 data with the patient. Prior to study start, dermatologists in the intervention group will be educated and trained in standardized HRQoL assessment and communication using the Skindex-29. At six consecutive visits, patients at study sites in the intervention group will be asked to complete the Skindex-29 on a desk-top pc at the clinic, just before their consultation with the dermatologist. A print-out of the completed questionnaire will be made and, guided by this print-out, feedback on the HRQoL scores will be given during the consultation. Primary outcome parameters are the impact of the HRQoL intervention on patients' HRQoL, and the effect of the HRQoL intervention on doctor-patient communication. Secondary outcomes include health status and disease severity. TRIAL REGISTRATION: The Netherlands National Trial Register (NTR): NTR1364.

Patient education in chronic skin diseases: a systematic review.

The negative impact of skin disease on quality of life (QoL) has been described in many studies. Patient education as an adjunct to treatment, with the aim of improving QoL and reducing disease severity, is a relatively new technique in dermatology. The objective of this article is to analyse and summarise evidence concerning the effects of patient education on QoL and disease severity in patients with chronic skin diseases. All source material was identified through searches in MEDLINE and Embase. The CONSORT statement was used to assess the quality of reported randomised controlled studies. Ten of 254 studies met the inclusion criteria. In five of them, statistically significant improvements in QoL were reported. The severity of skin disease significantly improved in three studies. In conclusion, patient education appears to be effective in improving QoL and in reducing the perceived severity of skin disease.

Health-related quality of life assessment in dermatology: interpretation of Skindex-29 scores using patient-based anchors.

In dermatology, the clinical use of health-related quality of life (HRQL) scores is impeded by lack of empirically and clinically based interpretation of these scores. We aimed to facilitate the interpretation of Skindex-29 domain and overall scores by identifying clinically meaningful cut-off scores, using patient-based anchors. Consecutively included dermatology outpatients completed the Skindex-29 and four sets of anchor-based questions, such as questions on the impact of skin disease on HRQL, on global disease severity, and on psychiatric morbidity. Pearson's correlations and receiver operating characteristic analysis were used to identify the optimal Skindex-29 cut-off scores corresponding to severely impaired HRQL. A total of 339/434 patients completed the questionnaires (response rate 78%), of which 322 could be used for data analysis. Cut-off scores associated with the patient-based anchors on the impact of skin disease on HRQL showed the highest accuracy (area under the curve ranged from 0.83 to 0.91). The corresponding Skindex-29 cut-off scores for severely impaired HRQL were as follows: > or =52 points on symptoms, > or =39 on emotions, > or =37 on functioning, and > or =44 on the overall score. The estimated cut-off scores can be used in clinical practice to identify patients with (very) severely impaired HRQL.

The burden of vitiligo: patient characteristics associated with quality of life.

BACKGROUND: Vitiligo is commonly regarded as a harmless cosmetic skin problem in Western societies, and the importance of treating patients with vitiligo is often underestimated. OBJECTIVE: We sought to determine the clinical and sociodemographic variables that adversely affect the quality of life in adult patients with generalized vitiligo so that these variables can be considered in the treatment and care. METHODS: A total of 245 adult patients with generalized vitiligo completed two quality-of-life questionnaires (the Medical Outcomes Study 36-Item Short-form General Health Survey and the Skindex-29). Physicians assessed sociodemographic and clinical characteristics of these patients. RESULTS: Dark skin type, vitiligo located on the chest, and treatment in the past appeared to have an adverse impact on the psychosocial domains of quality of life. Moreover, itch was reported by 20% of the patients in this study. LIMITATIONS: Psychiatric comorbidity was not evaluated in the analyses. CONCLUSION: Generalized vitiligo is a serious skin disorder with an adverse impact on the emotional state, comparable with that of other major skin diseases.

Cross-cultural inequivalence of dermatology-specific health-related quality of life instruments in psoriasis patients.

The dermatology life questionnaire index (DLQI) and the Skindex are the most commonly used dermatology-specific health-related quality of life (HRQOL) instruments. Although these tools are used in international surveys and clinical trials, the cross-cultural equivalence of their items has not been documented. We used differential item functioning (DIF), which is part of the Rasch model, to assess the impact of cultural background on the items of the DLQI and Skindex-29 and-17. The data of the 450 psoriasis patients, who attended in- and outpatient dermatology centers, was collected retrospectively from five European and one US center. The DLQI and Skindex-29 scales did not fit the Rasch model (P<0.0008) and 10/10 of the DLQI and 19/29 of the Skindex-29 items displayed significant DIF. Although the psychosocial scale of the Skindex-17 fitted the Rasch model, half or more of the items of the psychosocial (6/12) and the symptom scale (4/5) showed significant DIF across countries. These findings suggest that psoriasis patients from different countries respond differently to a substantial proportion of DLQI and Skindex items despite having the same level of underlying HRQOL impairment. Therefore, these instruments should not be used in their current form in international studies.

Quality of life in patients with psoriasis: a systematic literature review.

Data on physical, psychological, and social functioning of patients with psoriasis have been presented in many studies. The introduction of quality-of-life questionnaires has made it possible to systematically compare these data across studies. The aim of this study was to present an overview of quality-of-life data and to describe the relationship between demographic and clinical variables and quality of life in patients with psoriasis. Computerized bibliographic databases were screened for publications from January 1966 to April 2000. Predefined selection criteria were used to identify quality-of-life studies in psoriasis. Two investigators independently assessed and, subsequently, agreed on inclusion. Data were extracted on the objectives, methods, sample characteristics, and results of the studies. A total of 118 publications were found. Seventeen studies met the inclusion criteria. Patients with psoriasis reported physical discomfort, impaired emotional functioning, a negative body and self-image, and limitations in daily activities, social contacts and (skin-exposing) activities, and work. More severe psoriasis was associated with lower levels of quality of life. There was a tendency that higher age was associated with slightly lower levels of physical functioning and slightly higher levels of psychological functioning and overall quality of life. Sex and quality of life were found to be unrelated.

The suitability of quality-of-life questionnaires for psoriasis research: a systematic literature review.

OBJECTIVE: To critically appraise the suitability of current quality-of-life (QOL) questionnaires for psoriasis research. DATA SOURCES: Computerized searches of 5 bibliographic databases. QUESTIONNAIRE SELECTION: Predefined criteria were used to identify QOL questionnaires in dermatologic studies. Two investigators independently assessed and agreed on multidimensional generic, dermatology-specific, and psoriasis-specific QOL questionnaires for inclusion. DATA EXTRACTION: Data were extracted on the internal structure, reliability, and validity of the included questionnaires. DATA SYNTHESIS: Three generic, 3 dermatology-specific, and none of the psoriasis-specific questionnaires met the inclusion criteria: the Nottingham Health Profile (NHP), the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36), the Sickness Impact Profile (SIP), the Dermatology Quality of Life Scales (DQOLS), the Dermatology-Specific Quality of Life Instrument (DSQL), and the Skindex-29. The generic NHP, SF-36 and SIP are well established, reliable, and valid. Although the data are not conclusive, the SF-36 was useful to assess effects of psoriasis on its component scales. The dermatology-specific DQOLS, DSQL, and Skindex-29 are relatively new and, therefore, less widely tested. Available psychometric data demonstrated the reliability and validity of all 3 dermatology-specific questionnaires. The Skindex-29 was also useful to assess change. CONCLUSIONS: None of the identified psoriasis-specific questionnaires met the inclusion criteria. Data on the suitability of the included questionnaires for psoriasis research were relatively sparse. The included generic questionnaires allow comparisons with nondermatologic diseases but do not allow assessment of relevant dermatology-specific aspects and are not sensitive to subtle effects of psoriasis on QOL. On the basis of the psychometric data of the present review, we find the Skindex-29 to be the most valuable dermatology-specific questionnaire for psoriasis research. Combination of the Skindex-29 with the generic SF-36 combines the merits of both types of questionnaires and we therefore recommend this combination.