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.

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.

European EADV network on assessment of severity and burden of Pruritus (PruNet): first meeting on outcome tools.

BACKGROUND: Chronic pruritus is a frequently occurring symptom of various dermatoses that causes a high burden and impaired quality of life. An effective anti pruritic therapy is important for the patient, but its effectiveness is difficult to evaluate. Diverse methods and interpretations of pruritic metrics are utilized in clinical trials and the daily clinical practice in different countries, resulting in difficulties comparing collected data. METHODS: We founded a European Network on Assessment of Severity and Burden of Pruritus (PruNet) that is supported by the EADV. PruNet consists of 28 experts from 15 EU countries (21 dermatologists, 5 medical informaticists, 2 psychologists) and aims to unify the assessment of itch in routine dermatological care. Following a preliminary survey, a consensus conference was held in order to agree upon the prioritization of patient-reported outcome tools. RESULTS: Through utilizing the Delphi method, it was agreed that tools for measuring itch intensity (ex. the visual analogue scale) and quality of life (ex. ItchyQoL) are of primary importance and should urgently be foremost validated. CONCLUSION: The validation and harmonization of standards are needed for the improvement of quality care for patients suffering from pruritic dermatoses. This summer, the first validation studies in several EADV member countries already began.

What do we know about rheumatoid arthritis patients' support needs for self-management? A scoping review.

BACKGROUND: Self-management support is essential to perform self-management behavior. To provide this support in an effective way, insight in the needs for self-management support is necessary. OBJECTIVE: To give an overview of self-management support needs from the perspective of rheumatoid arthritis patients to help nurses to improve self-management. DESIGN: We conducted a scoping review for the period of January 2002 to May 2013 using the following inclusion criteria: (1) studies on adult patients aged 18 years and older, (2) studies from the perspective of rheumatoid arthritis patients, (3) studies reporting results on support needs, and (4) empirical studies using any design. DATA SOURCES: We searched in PubMed, CINAHL, and PsycINFO. REVIEW METHODS: Following the steps of a scoping review, we (1) identified the research question, (2) identified relevant studies, (3) selected studies, (4) charted the data, and (5) collated, summarized, and reported results. We incorporated the optional sixth step of consultation of a multidisciplinary panel of professionals and patients to validate our findings. RESULTS: Seventeen articles were included. Our review shows that rheumatoid arthritis patients have informational, emotional, social and practical support needs. We found an information need for various topics, e.g. exercises and medication. Patients express a need for emotional support in daily life, given through other RA patients, colleagues and supervisors and nurses. For information needs, emotional and social support it is important that it is tailored to the individual needs of the patient. CONCLUSION: The most important support needs for self-management mentioned by rheumatoid arthritis patients are more informational, social and practical support and emotional support. Considering patients' perspective as a starting point for delivering support for self-management can lead to the development of nursing interventions tailored to the needs of rheumatoid arthritis patients.

The Impact of Chronic Skin Disease on Daily Life (ISDL): a generic and dermatology-specific health instrument.

BACKGROUND: In dermatological research and clinical practice, there is a need for comprehensive self-report instruments that assess a broad spectrum of health implications of chronic skin diseases, including generic and skin-specific aspects of disease-related quality of life. The advantages of dermatology-specific, multidimensional instruments over generic instruments or single-dimensional quality-of-life measures are in the detailed and specific information they provide about health areas that are affected by the skin condition and that may change through therapeutic intervention. OBJECTIVES: The development of a multidimensional health status inventory for chronic skin diseases (Impact of Chronic Skin Disease on Daily Life, ISDL) is described. The dermatology-specific part of the inventory assesses dimensions of physical functioning, more specifically skin status, physical symptoms of itch, pain and fatigue and scratching responses as well as disease-related stressors like stigmatization. The generic part gauges dimensions of psychological functioning, disease-related impact, illness cognitions and social support by means of existing scales validated for other chronic diseases. METHODS: Reliability and validity of the questionnaire were studied in various samples of patients with psoriasis and atopic dermatitis. RESULTS: The ISDL showed high reliability and test-retest reliability in both patient groups. Convergent validity was indicated by moderate to strong correlations with other validated questionnaires. The scales proved sensitive to change both for dermatological ultraviolet B radiation therapy and cognitive behavioural treatment for itching. CONCLUSION: With its convincing results for reliability and validity the present evaluation supports the usefulness and applicability of the instrument for different chronic skin diseases.