John de Korte

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.

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. Pearsons 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.

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; Münchausens 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.

Characteristics of patients with universal vitiligo and health-related quality of life

date or devalue the Skindex-29 as a measure for QOL in CLE. The correlation between what physicians and patients perceive as objective improvement or deterioration of a skin condition may not correlate with the patient’s QOL. Our observations may imply that our treatment goals should extend beyond the obvious control of the disease, which is reliably measured by the CLASI. Quality of life does not uniformly improve as the activity of the disease wanes. This may mean that attention to cosmetic outcomes may need to become a routine part of our treatment plans for patients with CLE. For future trials, cosmetic considerations will affect power calculations based on QOL outcomes. In addition, analysis of our additional lupus-oriented questions indicates that patients with SCLE have a persistent concern about photosensitivity after disease activity and damage improve. It is likely that the risk of subsequent flares of their disease in response to outdoor activity reduces their QOL even though disease activity has improved. Clearly, QOL is tremendously impaired in patients with CLE, and measurements of disease improvement will not always correlate with measures directed at QOL.

Self-Inflicted Lesions in Dermatology: A Management and Therapeutic Approach - A Position Paper From the European Society for Dermatology 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.

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

BackgroundInterest 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/designIn 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 registrationThe Netherlands National Trial Register (NTR): NTR1364.

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.

Interpretation of Skindex-29 Scores: Response to Sampogna and Abeni

TO THE EDITOR Until recently, little was known about the interpretability of scores of the Skindex-29, a well-established, dermatology-specific health-related quality of life (HRQoL) instrument (Chren et al., 1997a, b). Nijsten et al. (2009) and Prinsen et al. (2010, 2011) were the first to identify the clinical meaningfulness of Skindex-29 scores by estimating a categorization of Skindex-29 scores, denoting mildly, moderately, and (very) severely impaired HRQoL (Nijsten et al., 2009; Prinsen et al., 2010, 2011). In their thoughtful commentary in the Journal of Investigative Dermatology, 131, (9) September 2011, Sampogna and Abeni persuasively showed how different methods, a distribution-based and an anchor-based method, respectively, result in different categorizations of scores (Sampogna and Abeni, 2011). They applied the distributionbased ranges of scores found by Nijsten et al. and the anchor-based cutoff scores found by Prinsen et al. to an Italian sample of inpatients diagnosed with psoriasis, and to another Italian sample of dermatological outpatients. By means of this comparison, differences between the two categorizations were shown; in general, the ranges of scores presented by Nijsten et al. were lower than the cutoff scores presented by Prinsen et al. Sampogna and Abeni also explored the clinical implications of these differences, for instance the consequence of using different categories in determining patient’s eligibility for systemic treatment. Unfortunately, a misinterpretation leading to an incorrect categorization

Satisfaction with treatment and health-related quality of life among patients with lichen planus: a web-based survey.

Although considered relevant, little is known about satisfaction with treatment and health-related quality of life (HRQoL) among lichen planus (LP) patients. There are only two studies that evaluated LP patients’ satisfaction with treatment and both used global, single item measures [1, 2]. Studies on the HRQoL of patients with oral LP showed that the impact of LP is comparable to other mouth diseases [3, 4] and that topical therapies improved HRQoL [5, 6]. In the present cross-sectional study [...]