C.A.C. Prinsen

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.

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.

Measurement of health-related quality of life in dermatological research and practice: outcome of the EADV Taskforce on Quality of Life

In the last decade, the importance of the measurement of health‐related quality of life (HRQoL) has grown significantly. Today, HRQoL measurement is generally considered to be important in clinical trials, in the assessment of disease severity, in patient management and in the field of health economics. Therefore, a good understanding of the concept of HRQoL and its measurement instruments is a prerequisite for both researchers and clinicians. The European Academy for Dermatology and Venereology (EADV) Taskforce on Quality of Life encourages the application of HRQoL instruments in research and clinical practice, and with this manuscript, the Taskforce aims to contribute to the quality of this application. In dermatology, a large number of HRQoL instruments exist and herewith, we summarize the most commonly used generic and dermatology‐specific HRQoL instruments. Information is given on the most important psychometric characteristics of these instruments, including: scale structure, reliability, validity and responsiveness. Furthermore, a flow chart is provided to support researchers and clinicians in selecting an existing instrument or, in case an appropriate instrument does not exist, in finding alternative solutions. The present manuscript is the first of a series of manuscripts to be written on behalf of the EADV Taskforce on Quality of Life, aiming to contribute to the scientific knowledge and measurement of patient reported outcomes in dermatological research and practice.

Health-related quality-of-life assessment in dermatologic practice: relevance and application.

Health-related quality of life (HRQoL) is gradually becoming a standard outcome in clinical research and health care management. Nevertheless, application in dermatologic practice is not customary and many practical and attitudinal barriers need to be overcome. To contribute to the discussion on and the implementation of HRQoL assessment in routine dermatologic practice, this article describes (1) why HRQoL assessment is relevant for dermatologic practice, (2) which patients would benefit most from routine HRQoL assessment, and (3) how HRQoL assessment can be applied in clinical practice.

Patients with lichen sclerosus experience moderate satisfaction with treatment and impairment of quality of life: results of a cross-sectional study

Although they are considered relevant, little is known about satisfaction with treatment and health‐related quality of life (HRQoL) among patients with lichen sclerosus (LS).

The efficacy of a health-related quality-of-life intervention during 48 weeks of biologic treatment of patients with moderate to severe psoriasis: results of a multicentre randomized controlled trial

Previous research, including studies in oncology, suggested that the application of a health-related quality-of-life (HRQoL) intervention can help monitoring disease and treatment over time, support communication with the patient, and improve treatment outcomes.(1-3) However, evidence on the effectiveness of a HRQoL intervention in dermatology is missing. We investigated the efficacy of a HRQoL intervention in dermatology practice. This article is protected by copyright. All rights reserved

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.

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 [...]

Optimising size and depth of punch grafts in autologous transplantation of vitiligo and piebaldism: a randomised controlled trial.

Abstract Background: To date, autologous punch grafting appears to be the easiest and least expensive surgical technique for stable vitiligo and piebaldism. Punch grafting is available worldwide, with no need for specialised instruments. However, no reliable data on efficacy and safety of different punch depths and punch sizes are available. Objective/methods: To compare the efficacy and safety of different punch depths and punch sizes in autologous punch grafting, a randomised controlled trial was performed in 33 patients with vitiligo or piebaldism. In each patient, four depigmented regions were allocated to: 1.5 mm deep grafts, 1.5 mm superficial grafts, 1.0 mm deep grafts, and 1.0 mm superficial grafts. Primary outcome was the total pigmented surface area. Secondary outcomes were Patients’ Global Assessment (PGA) and side effects. Results: Six months after grafting, 1.5 mm grafts showed a significantly larger pigmented surface area compared to 1.0-mm grafts (p < 0.001), though more side effects as well. No significant differences in the total pigmented surface between different punch depths were found. Deep grafts showed more erythema compared to superficial grafts. Conclusion: We recommend 1.5 mm superficial grafts in autologous punch grafting for trunk and proximal extremities in patients with stable vitiligo and piebaldism.