Future research into the treatment of vitiligo: where should our priorities lie? Results of the vitiligo priority setting partnership

Abstract

BackgroundVitiligo is the most frequent depigmentation disorder of the skin and is cosmetically and psychologically devastating. A recently updated Cochrane systematic review ‘Interventions for vitiligo’ showed that the research evidence for treatment of vitiligo is poor, making it difficult to make firm recommendations for clinical practice.ObjectivesTo stimulate and steer future research in the field of vitiligo treatment, by identifying the 10 most important research areas for patients and clinicians.MethodsA vitiligo priority setting partnership was established including patients, healthcare professionals and researchers with an interest in vitiligo. Vitiligo treatment uncertainties were gathered from patients and clinicians, and then prioritized in a transparent process, using a methodology advocated by the James Lind Alliance.ResultsIn total, 660 treatment uncertainties were submitted by 461 participants. These were reduced to a list of the 23 most popular topics through an online/paper voting process. The 23 were then prioritized at a face-to-face workshop in London. The final list of the top 10 treatment uncertainties included interventions such as systemic immunosuppressants, topical treatments, light therapy, melanocyte-stimulating hormone analogues, gene therapy, and the impact of psychological interventions on the quality of life of patients with vitiligo.ConclusionsThe top 10 research areas for the treatment of vitiligo provide guidance for researchers and funding bodies, to ensure that future research answers questions that are important both to clinicians and to patients.

A programme of research to set priorities and reduce uncertainties for the prevention and treatment of skin disease

“…Given the team's experience of running the vitiligo PSP in 2009/10, 344 we were keen to innovate and expand the remit of the PSP. This was achieved by moving beyond the simple generation of prioritised treatment uncertainties, to helping with the generation of subsequent research questions by means of consensus and open engagement with service users at the final workshop.…”

“…The 2010 update 367 was needed to assess new interventions, to highlight the gaps in research and the need for better designed and powered studies, thus informing clinical decisions and future research priorities. 344 The findings of the 2010 update are summarised in this chapter.…”

“…This list consisted of individuals who had participated in a previous Vitiligo PSP 344 and those who had contacted us expressing interest in being involved in vitiligo research. In addition, participants were recruited through the UK Vitiligo Society Facebook Page and details of the survey were 'Tweeted' under the UKDCTN Twitter (Twitter, Inc., San Francisco, CA, USA; www.twitter.com) account.…”

“…367,431,439 The updated Cochrane systematic review of interventions for vitiligo published in 2010, 367 and other reviews, have highlighted problems such as variance in design and a lack of standardised outcome measures and scales used in clinical trials. 344,367,431,439 There is a pressing need to develop core outcome measures so that effectiveness of treatments can be compared and combined more easily across trials. 439 It is important that outcomes used in trials are relevant to patients as well as clinicians.…”

“…We then reviewed the remaining uncertainties and, when appropriate, combined any similar uncertainties to create 'indicative uncertainties', which we refined into a standard format. 344 An example of several treatment uncertainties and the indicative uncertainty into which they were refined is given in Box 4. Any indicative uncertainties that arose from single treatment uncertainties were removed prior to the ranking stage.…”