Title: Women’s use of online health and social media resources to make sense of their polycystic
ovary syndrome (PCOS) diagnosis: a qualitative study
Version: 1 Date: 24 Aug 2023
Reviewer's report:
Dear all,
This was an interesting paper to read and is a useful area of focus, however, I do have concerns.
It felt like three individual papers had been included in one.  I would recommend publishing
the papers separately to allow more in-depth analysis of the UK and the US experiences which
differ broadly, based on the data provided. You could then develop the model you propose to
be inclusive of other research for a third paper.
I have included my comments below which were written in line order during my review for your
future use and consideration. However, I have three main concerns about the paper (which are
also referred to below):
(1)  You make several claims about being the 'first'. When there is a large literature which
discusses information seeking in women with PCOS, however you have not included any
discussion of these papers. You need to conduct a comprehensive literature search to position
your findings appropriately.
(2) There seems to be a lack of knowledge of PCOS as a condition. Often you refer to the
spectrum of PCOS, but no mention is made to the four phenotypes of PCOS. Moreover,  'lean
PCOS' is a common label used in the PCOS literature and is a common term to distinguish
between phenotypes.
(3) You do not detail a clear research question or epistemological position and your sample is
not as homogenous as it could be. Moreover, you refer to conducting an RTA but cite guidance
on TA and not the updated RTA papers (from 2019) onwards. As such, either the analysis needs
reviewing against the RTA guidance, or the paper needs to amend its method type to TA and
not RTA.
General Comments
Line 26 – you state ‘limiting their ability to make effective lifestyle changes’ however no context
or prior discussion is provided on why lifestyle change is important. I’d suggest another sentence
or two here to strengthen this argument.
Line 27 – Similarly rather than ‘to address this information gap’ I’d recommend being more
specific, it is not clear what gap you are referring to.
Line 34 – you state ‘those suffering from chronic conditions’ this is quite subjective to assume
suffering, I’d suggest updating the language to be objective.
Line 34 -  the current language adopted by UK gov is long-term conditions rather than chronic,
the authors may wish to consider updating their language if they deem it appropriate for the
paper.
Line 34-38 – you discuss normalisation by social comparison; the section draws on general
long-term condition literature in the most part. However, there is quite a large body of PCOS
literature which draws on this also and isn’t discussed here. This section could be refined to
include more detailed discussion of what we know around social comparison to normalise the
condition in PCOS.
Line 39 – please provide a clear research question or aim that was adhered to.
Line 61 – how was a formal diagnosis reported, was this self-report?
Line 66 – I would have anticipated that the two samples (UK and US) would have been
analysed and reported as two separate papers considering the vast difference in healthcare
systems between US and UK, and healthcare between US states, the samples are arguably not
homogenous.
Line 82 – It is concerning that a participant was included at only 1 month post diagnosis both
ethically and methodologically. Post diagnosis can be a distressing time, what protections were
put in place here? Methodologically, the other participants almost all had a recall time of over 1
year (except one other), allowing time for considerable reflection of the process in comparison
to newly diagnosed participant, suggesting the sample could have been refined to be more
homogenous. Please include detail about the ethical considerations made here, and how this
limited recall period impacted the data for this participant. Particularly in response to questions
around evaluating how they understood information then and now – which for the participant
only 1 month post diagnosis, is a very limited time difference.
Line 83 – overall the procedure could be reduced as it includes a lot of un-necessary information.
This would allow for more words in the analysis (see comments below).
Line 96 – you state you conducted an RTA but cite the guidance from 2006 which does not
refer to RTA specifically. RTA was described by Braun and Clarke from 2019 onwards as a
development to the TA they discuss in 2006. This needs updating to the relevant citations, and
the analysis reviewing to check it would still align with the 2019 guidance (which I understand
is likely as the changes to the method itself are minor).
Line 96 – what epistemological position was the research conducted within? This needs
including. Also needed is whether it was semantic or latent, or both, and inductive or deductive.
It begins as an inductive analysis but then in line 131 you state you used existing literature
suggesting a deductive approach. The methods are not clear.
Line 136 – please make the themes identified clearer and detail the subthemes here also.
Line 140 – whilst not an issue to use P1 and P2, it is usual for participants in qualitative work
to be allocated pseudonyms.
Line 142 – this is interesting, I assume it’s a US participant though as GPs are not able to
make diagnosis without following the diagnostic procedure in the UK which required ultrasound
and blood tests to diagnosis. Please as a minimum include the participants location after their
pseudonym/P1 so that the reader can contextualise the information without constantly revisiting
the table.
Line 139-155 – I’m not entirely sure that this theme answers the research, without a specific
question it is hard to judge, but it does not read as strongly as the others without only limited
examples. I’d consider expanding this theme with more data to demonstrate its breadth across
the participant sample, and how it answers the research aim/question.
Line 197 – can detail be given about what this symptom is? Is it a symptom according to the
literature or is this the participants understanding based on their engagement with the online
information. Please provide more clarity here.
Line 313 – ‘our findings also highlight divisions between groups experiencing PCOS’. This
suggests a lack of knowledge of the area, lean PCOS is a common label that has been attached to
a specific phenotype of PCOS. It is well known that there are divisions between groups of women
with PCOS, these reflect the different phenotypes of the condition. This needs addressing.
Line 365 – information seeking from women with PCOS has been reported in the PCOS
literature, as has social comparison. You have not cited any of the papers that discuss this in the
PCOS literature. I would recommend you conduct a comprehensive literature review to ensure
you are positioning your study appropriately.
Line 366 – the spectrum of PCOS you refer to represents the different phenotypes of the
condition. You need to ensure your language is reflective of this and recognises the knowledge
we already have in the area around how different symptom profiles fit with different phenotypes.
Line 410 – clarify what you mean by methods and questions overlap? What methods and
questions. This is not clear.
Line 437 – you state that gaining knowledge of the self through experimentation with treatments
is consistent with research…but not previously discussed in relation to PCOS. This is not correct.
It has been discussed in several papers.
Line 461 – this model is interesting, but (1) needs updating to ensure your paper is reflect of
the literature and (2) would need to consider that PCOS symptoms are not continuous across the
lifespan and instead consistently change. Furthermore, this paper is to detail findings from two
qualitative studies, to also introduce a new model diminishes the message of the paper. I would
suggest this is a potential third paper.