Title: Conversations Between Women with Vulval Lichen Sclerosus: A Thematic Analysis of
Online Forums.
Version: 1 Date: 20 Dec 2020
Reviewer's report:
I enjoyed reading this paper. As someone who sees a lot of patients with lichen sclerosus and
researches LS and participates in the online boards, I found that a lot of the themes and quotes
ring true.
There are some errors and methodological issues with the study.
There are not studies supporting a prevalence of LS of 3% and the Goldstein paper referenced
does not show that. IT showed in a general gynecology clinic 1.7% of the patients had lichen
sclerosus. We don’t know the true prevalence of LS and studies range depending where you
look (general practice, gynecology vs nursing home) and who is looking.
The population chosen to study is interesting. It seems very small. There are much more active
and popular lichen sclerosus groups online. There are many large Facebook groups which are
much more active (many posts and members/day) than the ones used in the study. For example
the biggest one is Lichen Sclerosis / Sclerosus - A Five-Star LS Support Group has 11735
members but they require you to have LS to join. Some of the Facebook groups allow physicians
in for research but many are suspicious of this type of research and have banned physicians who
are open about their research intentions.
With anonymous posts, you don’t know how many women are participating or if it’s the same
ones posting many times. You noted there were psuedonyms which suggests you can tell how
many participants posted. Usually with this type of research you post how many people there
were. You number them. You have a table with coding of which participants (ex. 1, 4, 5
supported each theme) then when you have a quote you tell us which participant it was so the
readers know if you keep using the same participants versus different ones.
Generally in qualitative research two authors review all the themes not just a subset.
In additions to not confirming the participants have LS, we don’t know who is caring for the
patients or how they were diagnosed. We don’t know where in the world they are from and care
may differ geographically. When they use the word “vulval” they are usually in the UK.
The sample size of 202 posts over 6 years is a small number again compared to the current action
on many of the Facebook support groups.
This quote “I remember when I first got an itchy patch, about 4 years ago, and the female doctor
I saw at the time was really brusque and put it down to the "itch-scratch cycle"!!   She said that
if I didn't scratch it then it wouldn't be itchy...but of course there was an itch there in the first
place that I had to scratch   That really knocked my confidence and I guess that's why I've not
sought another opinion since”
has problems as many patients have lichen simplex chronicus and lichen sclerosus. The doctor
may not have been wrong and the LS may have been too early to see re: anatomy changes as
many patients with LS and LSC have an itch-scratch issue.
“ A predominant symptom of LS is severe pruritis. Women on the forums frequently experience
a desire to itch”. – Itch is a symptom. One scratches an itch.
The section about education about women’s anatomy and correct terms is interesting but not
really related to your study. The paper is very long and this probably should be removed.
The authors state future research should focus on preventing flares. There are large publications
suggesting maintenance therapy prevents flares (Lee, Bradford, Fischer, 2015) where 90% of
flares decreased if maintenance steroids were used.  Further a survey of ISSVD members
(experts in the care of vulvar disease) published in 2015 showed even then the majority 64%
continued maintenance therapy in all patients (Selk, 2015). The quotes in your study suggest the
participants are using prn steroids.
A final issue in the methodology is Google search results are related to your previous search
results and where you are located in the world. Thus, the results you got may not be the most
popular lichen message boards that are openly accessible.