Establishing Effective Diagnostic Criteria for Lichen Sclerosus (SHELLS)


 Lichen Sclerosus (LS) is a common female genital (vulval) skin condition which can cause significant symptoms, interferes with daily living, and has a substantial impact on quality of life.

The Establishing Effective Diagnostic Criteria for Lichen Sclerosus (SHELLS) project will create a checklist (‘diagnostic criteria’) to allow accurate diagnosis of LS based upon symptoms and visual changes. The checklist will be available for use by a range of health professionals (not only skin specialists) to diagnose LS as well as to help patients self-diagnose in the community.


Opportunity to take part

The SHELLS project involves close collaboration with patients and the public. A study advisory group including patients will be formed to oversee this research and to inform decision making throughout the project. They will help with several roles such as development of the study protocol, writing of the participant information sheets, rewording the final diagnostic criteria so they can be understood by patients and the public, and contributing to reports and newsletter that will be used to share results and spread the word about this work. 

If you would like to become involved in the SHELLS project, please get in touch.

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Key information

Why are we doing this project?
Lichen sclerosus can be difficult to diagnose, especially for non-specialists. There are no specific checklists to guide doctors in what they should be looking for. This means that LS often goes under-recognised and undertreated. There is increased risk of cancer of the vulva in women with LS and this is thought to occur more frequently in those who have not received adequate treatment. The SHELLS project aims to develop a checklist of diagnostic criteria to help a range of health professionals to diagnose LS as well as to help patients self-diagnose in the community.
What will the research involve?
  1. International experts will be asked to agree a list of diagnostic criteria for LS in a consensus study.
  2. A study advisory group including patients and healthcare professionals will work together to write a Plain English description of the final list of criteria.
  3. The accuracy of the reworded LS criteria will be assessed in groups of women in the specialist outpatient clinic (diagnostic test accuracy study). The criteria will be further tested in a separate group of women in outpatient clinics (external validation).
  4. A flowchart will be developed for use by non-specialists and patients to help diagnose LS (diagnostic tool).
  5. Early work will be performed to look at the practicality of using this diagnostic tool in primary care and adding it to the national cervical screening programme.
What will happen with the results?

This project will contribute to better diagnosis and earlier recognition of vulval LS. This will help patients get the right treatment at the right time and therefor improve overall quality of life.

The results will be widely disseminated to women, clinicians, researchers and those commission services. The results will be shared through networks with patient and professional groups, as well as presentations at conferences and publication in scientific journals.

Who is funding the project?
This study is funded by the National Institute of Health Research Academy as part of an Advanced Fellowship.

Centre of Evidence Based Dermatology

The University of Nottingham
Applied Health Research Building
University Park, Nottingham

telephone: +44 (0) 115 84 68631