Future Research into the Treatment of Vitiligo: Where Should Our Priorities Lie? Results of the Vitiligo Priority Setting Partnership

Eleftheriadou et al. (2011) full text summary PDF

For which topic were research priorities identified?

vitiligo

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Vitiligo 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.

What was the objective?

to stimulate and steer future research in the field of vitiligo treatment by identifying the 10 most important research areas for patients and clinicians

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

Setting up PSP: January 2009 - March 2009. Consultation: March 2009 - August 2009. Collation: August 2009 - December 2009. Interim ranking: January 2010 - Februrary 2010. Workshop: February 2010.

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: identifying and engaging potential stakeholders. Step 2: consultation: survey asking participants to submit questions about the treatment of vitiligo, additional treatment uncertainties identified from literature, 1427 questions submitted. Step 3: data processing: collation: 660 uncertainties that specifically related to the treatment of vitiligo, additional 58 treatment uncertainties from literature, resulting in 718 uncertainties, refined to a longlist of 93 treatment uncertainties, each collated uncertainty represented a broad area for research. Step 4: interim ranking: participants were asked to vote for their three favorite topics, resulting in shortlist of 23 uncertainties. Step 5: final prioritization: workshop: small and plenary group discussions and rankings

Which stakeholders took part?

Patients, healthcare professionals and researchers with an interest in vitiligo. Survey: 461 participants. Interim ranking: 230 participants. Workshop: 47 participants: 21 patients or patients' representatives, 16 healthcare professionals.

How were stakeholders recruited?

Paper copies of the questionnaire were sent to the Vitiligo Society (N=1268) and to the BAD (N=835). E-mails were sent to members of the UK DCTN (N=500), and details of the project (with links to the online survey) were advertised on the websites and in the newsletters of the relevant organizations listed above. The ranking exercise was also advertised on the websites and in the newsletters of relevant organizations, as per the consultation stage. In addition, advertisements and articles were placed in the Voice magazine for black and ethnic minorities, the British Dermatological Nursing Group magazine16 and the bulletin of the Primary Care Dermatology Society to target specific groups that had been under-represented during the consultation stage.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 12 members.