Lichen sclerosus is a rare, under-researched, and poorly understood condition. The lack of knowledge concerning the disease has led to a lack of awareness, late diagnosis, and a limited amount of treatment options. However, professionals in the field are beginning to understand that it is the patients who have the most information to share concerning this diagnosis. Therefore, their opinion concerning research priorities should be held at the highest value. They’ve now turned to the members of this community to develop a list of the top ten research priorities moving forward.
The project
This was a collaborative project between the The British Society for the Study of Vulval Diseases and the James Lind Alliance. It was called the Lichen Sclerosus Priority Setting Partnership and it involved two surveys and a workshop. The first survey received around 650 responses from patients, caregivers, medical professionals, and family members of those living with the condition. Together over 2,500 research priorities were suggested. Using data from this survey and information from 3 different systemic reviews of the existing literature, 38 research questions were identified which the scientific community has yet to answer.
A second survey was then conducted online to determine which of these 38 questions were the most important to patients. 954 people responded to the survey and the questions were narrowed down to 23.
To finalize these into a concise list of 10, a face to face workshop was held between patients and researchers. Here, the final 10 priorities were established.
The hope is that this list of priorities will not only help to accelerate research for the aspects of the condition which matter most to patients, but that it will help raise awareness of Lichen sclerosus among the general public. With an increase in awareness, individuals with the condition are likely to be diagnosed more quickly and receive the treatment they need faster.
Projects like this are so encouraging because they illustrate a shift within the medical field to prioritize and value patient feedback. Ultimately, they are the ones living and dealing with their diagnosis and we need to start focusing more on their perceptions of what is important regarding research.
You can read the full report detailing the 10 research priorities and other findings from this study here.
You can also read the comprehensive summary of the study here.
