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

Acne causes profound negative psychological and social effects on the quality of life (QoL) of patients. The European Dermatology Forum S3-Guideline for the Treatment of Acne recommended adopting a QoL measure as an integral part of acne management. Because of constantly growing interest in health-related QoL assessment in acne and because of the high impact of acne on patients' lives, the European Academy of Dermatology and Venereology Task Force on QoL and Patient Oriented Outcomes and the Task Force on Acne, Rosacea and Hidradenitis Suppurativa have documented the QoL instruments that have been used in acne patients, with information on validation, purposes of their usage, description of common limitations and mistakes in their usage and overall recommendations.

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

BACKGROUND: 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). OBJECTIVES: In a cross-sectional study, we aimed to examine (i) satisfaction with treatment, (ii) patient characteristics associated with satisfaction and (iii) HRQoL in Dutch patients with LS. METHODS: Members of the Dutch LS Patient Association (n = 750) were invited to complete a web-based survey. We measured satisfaction with treatment with a study-specific questionnaire, and HRQoL with the Skindex-29. We calculated domain scores for symptoms, emotions and functioning, and categorized scores into little, mildly, moderately or severely impaired HRQoL. We used a multiple linear regression analysis to examine whether patient characteristics were associated with treatment satisfaction. RESULTS: In total 303 patients (40·4%) were included. Patients under current treatment (n = 265, 87·5%) were moderately satisfied with their treatment. Patients rated 'treatment effectiveness' as most important, although 58 (22%) were dissatisfied with the effectiveness of their current treatment. More impairment on the HRQoL emotions domain and a higher degree of disease severity were both associated with lower satisfaction with treatment and explained in total 13·5% of the variance in treatment satisfaction. On all HRQoL domains, one-third of the patients (range 34·7-38·9%) reported severe impairment. CONCLUSIONS: Patients with LS are moderately satisfied with their treatment, and one-third of patients experience severe impairment of HRQoL. To improve dermatological care, we recommend enhancement of doctor-patient communication, information provision and organization, which may be more amenable to change than treatment effectiveness or safety.

Why quality of life measurement is important in dermatology clinical practice: An expert-based opinion statement by the EADV Task Force on Quality of Life.

The aim of this study was to describe the many ways in which quality of life (QoL) measurement may potentially be advantageous in routine clinical dermatology practice. Thirteen members of the EADV Task Force on Quality of Life, eight dermatologists, three health psychologists, one epidemiologist and one pharmacoepidemiologist, independently listed all of the ways they thought this may be advantageous. A total of 108 different ways of using QoL information in clinical practice were suggested (median per participant = 8, range = 4-15), and were classified into 20 descriptive groups. These were sorted into the following five categories: inform clinical decisions, clinician-patient communication, awareness of skin disease burden, informing the consultation and clinical service administration. The wide range of potential benefits identified may not only encourage clinicians to use these measures but also highlights many areas requiring evidence to establish the true value of routine use of QoL measures.

Consumer Quality Index Chronic Skin Disease (CQI-CSD): a new instrument to measure quality of care from the patient's perspective.

BACKGROUND: Assessing quality of care from the patient's perspective is considered to be highly relevant. As a standardized instrument in dermatology was lacking, we developed a patient experience questionnaire regarding chronic skin disease care: the Consumer Quality Index Chronic Skin Disease (CQI-CSD). OBJECTIVES: (i) To evaluate the dimensional structure of the CQI-CSD, (ii) to assess its ability to distinguish between hospitals according to patients' experiences with quality of care, (iii) to explore patients' experiences with dermatological care and priorities for quality improvement according to the patients, and (iv) to optimize the questionnaire based on psychometric results and stakeholders' input. METHODS: In a cross-sectional study 5647 adult patients who received dermatological care in the past 12 months in 20 hospitals were randomly selected and invited to fill out the questionnaire. RESULTS: Overall 1160 of 3989 eligible respondents (29% response rate, 30-87 per hospital) were included for analysis. The CQI-CSD comprised seven scales with high internal consistency (Cronbach's α = 0·74-0·92). The instrument's discriminative power was limited. Patients were positive about the care provided by nurses and doctors, but the provision of information by healthcare providers, accessibility of care and patient involvement could be improved. We optimized the CQI-CSD, resulting in a revised questionnaire containing 65 items. CONCLUSIONS: In conclusion, the CQI-CSD is a useful instrument to measure patient experiences with dermatological care.

Summary of the Dutch S3-guidelines on the treatment of psoriasis 2011. Dutch Society of Dermatology and Venereology.

This document provides a summary of the Dutch S3-guidelines on the treatment of psoriasis. These guidelines were finalized in December 2011 and contain unique chapters on the treatment of psoriasis of the face and flexures, childhood psoriasis as well as the patient's perspective on treatment. They also cover the topical treatment of psoriasis, photo(chemo)therapy, conventional systemic therapy and biological therapy.

Satisfaction with treatment among patients with psoriasis: a web-based survey study.

BACKGROUND: Various psoriasis treatments are currently available: topical therapy, photo(chemo)therapy, oral agents and biologics. Little is known about patients' satisfaction with these treatment options. Moreover, the few available studies show methodological shortcomings. OBJECTIVES: To answer the following questions: firstly, how satisfied are patients with psoriasis with their current treatment and does patients' satisfaction significantly differ between treatment types when controlling for demographic and clinical factors? Secondly, how important are specific domains of satisfaction to patients, and when taking perceived importance into account, which domains merit the most attention in improving quality of care? METHODS: Members of the two existing Dutch associations for patients with psoriasis were invited to complete a web-based survey, which included a study-specific satisfaction questionnaire. RESULTS: A total of 1293 patients completed the survey (response rate 32%). Overall, patients were moderately satisfied with their current treatment. Patients receiving topical treatment were significantly least satisfied; patients receiving biologic treatment were significantly most satisfied. Overall, patients rated 'treatment effectiveness' as most important, followed by 'treatment safety' and 'doctor-patient communication'. Domains with the highest 'room for improvement' scores were effectiveness of topical therapy, phototherapy and oral agents (but not biologic treatment), convenience of topical treatment and safety of systemic treatments (both oral agents and biologics). CONCLUSIONS: From the perspective of patients, biologic treatment is promising. To improve further the quality of psoriasis care, the effectiveness and convenience of topical therapies, the safety of systemic therapies, and doctors' communication skills need to be addressed.

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.