Title: Conversations Between Women with Vulval Lichen Sclerosus: A Thematic Analysis of
Online Forums.
Version: 1 Date: 18 Dec 2020
Reviewer:  Tessa Copp
Reviewer's report:
This study is on an important and under-researched topic. The findings provide important data
on the lived experience of women with vulval lichen sclerosus, illustrating the benefits of a
diagnosis, such as validation, explanation and a community in which to share their experience.
The findings also highlight the negative social and psychological consequences of the condition,
such as barriers to open discussion, lack of social support and impact on relationships and mental
health.
Overall, the paper is very well written and methodology well described. The authors have
provided a strong rationale for the study. Some issues and suggestions are outlined below. I
hope they are helpful.
Introduction
- Although there is a paucity of research on this topic, one study that may be relevant to include
is by Sadownik et al (2020) “A qualitative exploration of women’s experiences of living with
chronic vulvar dermatoses”.
Methods
- Did the researchers have any existing knowledge or interest in this topic? How may have the
authors’ experiences influenced their interpretation of the data? Please comment and/or add one
sentence about this to the methods.
- More details about the online forums and setting would be beneficial. For example, was it
possible to identify whether the forums were country-specific?
Results
- Whilst the inclusion of lots of quotes illustrates the authors’ analysis is grounded in the data, I
suggest including only one quote per point/paragraph to facilitate reading and reduce repetition.
You could include the extra quotes in a table or appendix, referenced in text for each relevant
section.
- For the most part the results are well written, however there are a few places that need to
be rephrased to clearly convey the perspective of the participants, not the researchers. For
example, instead of “Online forums may the only place for women to discuss their concerns with
other women with LS”, you could rephrase as (if this was indeed expressed): “many comments
described how online forums were the only place women felt they could discuss their concerns
with other women with LS”.
- Similarly, statements such as the following seem like they would be more appropriate in the
discussion, as the results should only describe the participants’ perspectives and experiences e.g.
“Once women are diagnosed with LS, some will wish to discuss their experiences with other
people”. Alternatively, you could rephrase this in the results to something like “some women
expressed how helpful and reassuring the online forums were in enabling them to communicate
with others going through the same experience.”
Discussion
- Suggest renaming women’s health to women’s genital/vulval health or another more specific
term to help break through the tendency to use colloquial, broad or incorrect terms.
- More emphasis could be placed on the importance of a timely, accurate diagnosis to minimise
symptoms, scarring and associated risk of cancer, in addition to the psychosocial benefit a
diagnosis brings e.g. see: Lee & Fischer (2018). Diagnosis and treatment of vulvar lichen
sclerosus: an update for dermatologists. American Journal of Clinical Dermatology.
- In addition, brief discussion on how thrush is overdiagnosed could be relevant to include, given
it appears to be a barrier to timely, correct diagnosis of vulvar lichen sclerosus.
- Whilst these findings illustrate that women are active in the self-management of their condition,
I wonder whether this is particularly because they were forced to search for an explanation and
diagnosis themselves given the lack of support from HCPs? I am quite not sure what you mean
by “build upon motivation” in this context. Please clarify.
- Some suggestions in terms of resources available for patients and guidelines for clinicians may
be helpful to include
- The limitations of the sample are acknowledged but could be expanded upon. Additional
research in more diverse samples is needed to examine this important topic further.