Lichen Sclerosus PSP

Lichen Sclerosus Priority Setting Partnership (PSP)

Overview

Lichen sclerosus is a chronic, inflammatory skin condition that mainly affects genital skin.

There are many uncertainties about lichen sclerosus in men, women and children, due to lack of published high quality evidence. There is a great need for further research into the diagnosis, treatment and prevention of this condition.

To address this, the James Lind Alliance Lichen Sclerosus Priority Setting Partnership (PSP) has been set up to identify and prioritise research questions that are important to people who have lichen sclerosus, the people who care for them, and the health professionals who treat them. The project is funded by the British Society for the Study of Vulval Disease (BSSVD) and co‐ordinated through the Centre of Evidence Based Dermatology.

Results

We'd like to thank everyone who took part. The results of the PSP have been published in the British Journal of Dermatology, but can also be read in our final report on the PSP:

Final Report

Future research priorities for lichen sclerosus – results of a James Lind Alliance Priority Setting Partnership Br J Dermatol. 2018 Nov 25.

Key Facts

1. What did the PSP involve?

The partnership held its first meeting in July 2017. Surveys will be used to help identify questions that are important to people who have lichen sclerosus, the people who care for them, and the health professionals who treat them. The questions may be about the causes, diagnosis, treatment or prevention of lichen sclerosus.

A summary of the whole process is shown below. It will take about one year to complete.

Survey 1 Collection survey - asking for uncertainties in the management of lichen sclerosus from patients, their parents/carers/partners, and health professionals.
Uncertainties collated Responses to survey used to identify true uncertainties.
Survey 2 Ranking survey – most frequently raised questions about uncertainties to be ranked in order of importance
Final workshop This involves people who have lichen sclerosus, their parents/carers/partners, and health professionals attending a workshop to discuss and prioritise the submitted questions.
Top 10 uncertainties Information is published and developed in to research proposals so that future research focuses on the most important questions.

2. Who was involved?

The partner organisations involved in promoting the Lichen Sclerosus PSP are as follows:

British Society for the Study of Vulval Disease (BSSVD)

UK Dermatology Clinical Trials Network (UK DCTN)

British Association of Dermatologists (BAD)

James Lind Alliance (JLA)

DermNet New Zealand

Primary Care Dermatology Society

Society for Academic Primary Care (SAPC)

Vulval Pain Society

Manchester Vulval Support Network (MVSN)

International Society for the Study of Vulvovaginal Disease (ISSVD)

3. What will happen to the results of the study?

The uncertainties identified during this project will be published on the JLA website and used to inform future research funding. The results will be made available on this website as well as through partner organisations’ websites and social media. We will also publish the results in the scientific press. You will not be identified in any publication. We will also make funding bodies aware of the Top 10 questions to help raise the profile of lichen sclerosus research.