Poster presentation, P63

Official XXIst International Pigment Cell Conference website - 21-24 Sept 2011, Bordeaux - France | updated: September 04 2011

What outcomes are important to patients and clinicians: survey results

SPEAKER M. Whitton #whois submiter ?
AUTHOR(s) V. Eleftheriadou, K. Thomas, M. Whitton

Vitiligo is the most common chronic depigmentation disorder, which has a major impact on the quality of life of its patients. The authors of the recently updated Cochrane Systematic review of interventions for vitiligo concluded that there was insufficient robust evidence to support the efficacy of the treatments assessed. One of the most important reasons was that it was not possible to pool data due to the wide variations in outcome measurements for this disorder reported in the trials It is increasingly recognised that both patients and clinicians have a key role to play in driving the research. It has also been reported that patient-centred outcomes should be incorporated into the design of future studies for vitiligo. Therefore it is essential to incorporate patients’ and clinicians’ views in the choice of outcome measurements. The objective of this survey is to find out what outcome measurements are important to both patients and clinicians. A survey of patients (Vitiligo Society) and clinicians (UK Dermatology Clinical Trials Network and British Association of Dermatologists) was conducted, as part of the Vitiligo Priority Setting Partnership (PSP). Participants in the PSP were asked in an open-ended questionnaire to submit their opinions on what should be measured in vitiligo trials. Results: 86% (399/461) of PSP participants suggested at least one outcome measurement. In total 412 suggestions were made. Seven percent (30/412) of suggested outcomes were excluded as non-relevant. Two thirds of respondents were patients and 1/3 were clinicians. More women responded that men and most were 30-60 years old.69% (277/399) of participants stated that repigmentation is the most desirable outcome measure for the treatment of vitiligo but consensus over how this should be expressed was mixed. Patients tended to focus on “cosmetically acceptable” and “permanent repigmentation”, rather than the simple proportion of repigmented skin.15% (61/399) of participants suggested that the cessation of spreading of vitiligo should be measured. Stabilising the disease is seen as a realistic outcome measure at least until repigmentation occurs. 9% (37/399) of participants consider Quality of Life important. Reduction in stress, embarrassment and improvement in support and self confidence were mentioned. In conclusion, it is well known that valid and reliable outcome measurements are a prerequisite of evidence based medicine. This survey is the first step



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