International Initiative for Outcomes (INFO) for vitiligo: workshops with patients with vitiligo on repigmentation

Background
There is no cure or firm clinical recommendations for the treatment of vitiligo. One of the main issues is the heterogeneity of outcome measures used in randomized controlled trials for vitiligo.

Objectives
To define successful repigmentation from the patients’ point of view and to propose how and when repigmentation should be evaluated in clinical trials in vitiligo.

Methods
We conducted three workshops with patients with vitiligo and their parents or caregivers. Workshop 1 was held at World Vitiligo Day (Detroit, MI), workshop 2 at the University of Texas Southwestern Medical Center and workshop 3 at the Vitiligo and Pigmentation Institute of Southern California, University of California.

Results
Seventy?three participants were recruited. Consensus on the following questions was achieved unanimously: (i) the definition of ‘successful repigmentation’ was 80–100% of repigmentation of a target lesion and (ii) both an objective and a subjective scale to measure repigmentation should be used.

Conclusions
This was the largest patients’ outcomes workshop. We followed the guidance from the CSG?COUSIN and the Vitiligo Global Issues Consensus Group. Our recommendations to use percentage of repigmentation quartiles (0–25%, 26–50%, 51–79%, 80–100%) and the Vitiligo Noticeability Scale are based on the best available current evidence. A limitation of the research is that the workshops were conducted only in the U.S.A., due to pre?existing organisational support and the availability of funding.

Contributors

V. Eleftheriadou
I. Hamzavi
A.G. Pandya
P. Grimes
J.E. Harris
R.H. Huggins
H.W. Lim
N. Elbuluk
B. Bhatia
A. Tovar?Garza
A.F. Nahhas
T. Braunberger
K. Ezzedine

Publication

Journal: British Journal of Dermatology
Volume: 180
Issue:
Pages: 574 - 579
Year: 2019
DOI: https://doi.org/10.1111/bjd.17013

Further Study Information

Current Stage: Completed
Date: November 2014 - 2016
Funding source(s): The Global Vitiligo Foundation


Health Area

Disease Category: Skin

Disease Name: Vitiligo

Target Population

Age Range: 0 - 100

Sex: Either

Nature of Intervention: Any

Stakeholders Involved

- Consumers (caregivers)
- Consumers (patients)

Study Type

- Recommendations for outcome measures (measurement/how)

Method(s)

- Delphi process
- Focus group(s)

We conducted three workshops with patients with vitiligo and their parents or caregivers. Workshop 1 was held at World Vitiligo Day (Detroit, MI), workshop 2 at the University of Texas Southwestern Medical Center and workshop 3 at the Vitiligo and Pigmentation Institute of Southern California, University of California.