Reviewer's report
Title:A comprehensive view of occurrence and diagnosis of endometriosis: A
qualitative study
Version:1Date:14 May 2014
Reviewer: Kate Seear
Reviewer's report:
Thank you for the opportunity to review this publication on this important disease.
Although I believe the paper has some merit and I am keen to see more work
published that draws upon the experiences of women themselves, the paper has
a number of problems in its present form and requires considerable work. My
recommendation is as follows:
• Major Compulsory Revisions
My main comments and concerns are detailed below.
1. The title is a little misleading and should perhaps be reconsidered. It claims to
be a ‘comprehensive view’ of endometriosis. All research is necessarily a partial
account of a phenomena, object or condition. The title could perhaps be more
descriptive and targeted in line with the explicit focus of the study (on which, see
below).
2. Background, paragraph 1 – there is mention of the costs of endometriosis from
a 2007 study. Our understanding of the costs associated with endometriosis has
since been revised (most recently, for instance, in Simeons et al. 2012) and this
should be included. Also, when referencing a study such as this, it is important to
clarify which currency is referenced for context and the benefit of your readers.
3. Background, paragraph 3 – there is reference to the need for a more ‘holistic
approach’, but this term is not defined and it is unclear what it means (it’s also
used subsequently in the paper and so needs to be clarified for the same
reason). It is also suggested, in the same sentence, that ‘most studies’ on
endometriosis focus on only one ‘aspect’ of diagnosis. It isn’t clear what the
authors mean by this, nor which ‘aspects’ of diagnosis are typically addressed
and which are typically neglected. This is extremely important especially given
the very broad claim being made about ‘most’ literature. This needs more detail
and potential revision.
4. Background, paragraph 3 – there is mention that no studies have led ‘to a
concept’. Of what?
5. Background, paragraph 3 – there is mention to a ‘lack of adequacy in
qualitative studies’. What is meant by ‘adequacy’ here (this is a fairly vague and
fraught concept in relation to qualitative research and needs revision). Also,
which studies are the authors talking about? There is a small (but significant)
body of qualitative literature on endometriosis and it is important to cite specific
studies when making such claims.
6. Background, paragraph 3 – There is mention of the need for a ‘greater and
deeper understanding of endometriosis’ in order for detection and management
to happen sooner. On whose part? Doctors, women or both (presumably it is the
latter)?
7. Background, paragraph 3 – the aims of the study are not clear. It is suggested
that the authors aim to present a ‘new and comprehensive view and concept’ of
the disease. The meaning of this is not at all clear. Although I understand that it
may be a question of language, more detail is needed here. The explicit focus of
the article is not clear, and it is not apparent how this paper will make a
contribution to the existing literature. In part because of the issues identified
above, it is also not clear how the paper engages with and/or builds upon existing
literature.
8. Methods, sampling and setting – There is mention of the characteristics of
participants being varied but these variations are not detailed. It is also said that
this shows ‘maximum variances of samples’, but it is not clear why this is
necessary or important in this respect. It is not essential for qualitative research.
9. Methods, data credibility – the amount of time spent on the study is not
relevant to the study’s ‘credibility’. If the authors feel that it is necessary to justify
the rigour of their approach (which I do not believe it is beyond that already
detailed in data analysis) they may wish to refer to studies published in the BMJ
on assessing the quality of qualitative research.
10. Results – these are generally clear and clearly articulated but the summary
reads very much like a general description of the symptoms associated with the
disease and women’s concerns about the way that these symptoms impact upon
them, with very little analysis of the data, discussion of how these findings relate
to the existing literature, and so on. There are already a number of published
studies that document women’s experiences with the disease (the Cox studies,
one of which is cited; my own work (including a recent book, published in 2014);
the work of Markovic, Manderson and Warren; the work of the UK Endopart
group on couples (one study is cited in the manuscript but there are now others)
and Elaine Denny’s work – both sole authored and co-authored). Although this
data is useful and important, its presentation suffers from any clear sense of
purpose and direction – compounded in part by the lack of clear focus/explicit
aims of the study, as mentioned above. This section needs considerable revision
in my view. It might be more useful, for instance, to consider how aspects of the
data relating to diagnosis and pain mesh with findings from other parts of the
world, and to consider whether there is anything unique about the experience of
Iranian women (and the views of local doctors) that offers an opportunity to
address the unacceptably long delay to diagnosis for women.
11. Results, theme 3, paragraph 1 – It is unclear what is meant by women’s
‘feminine identity’. There is a very large body of feminist literature from many
disciplines that critically deconstructs the notion of ‘femininity’, ‘feminine identity’
and ‘feminine roles’. Feminine identities, are, for example, plural (rather than
singular) and they vary across time and place/space. They are also not fixed, but
made and remade via different practices (which might include women’s
encounters with medical professionals who encourage them to think about
themselves and their bodies and embodied experiences in terms of an expected
or idealized ‘feminine role’). The sections on feminine roles need to proceed with
caution and acknowledge the heterogeneity of experiences for women.
12. Results, theme 3, paragraph 12 – should abortion perhaps be miscarriage?
13. Results, theme 5, paragraph 2 – the section on marriage is important and
may partially explain the diagnostic delay. This should be expanded. At the end
of this section (theme 5), the implications of this analysis for diagnosis and the
diagnostic delay, moving forward, need to be included.
14. Results, theme 7, paragraph 3 – there is mention, under this section, of one
participant feeling tired of going from one doctor to another. This quote is
included in a section on disruption to family life, although it is not clear how these
two are connected. It may be, for example, that the patient is frustrated and finds
this disruptive and time consuming. It may also be that her attendance at multiple
doctors has something to do with the inadequacies of the health care system as
she experiences them, or a difficulty she has experienced in achieving a
diagnosis. I am not sure that this quote belongs here, or if it does, more might
need to be said about the context.
15. Discussion – there is mention, at paragraph 1, that this study discusses
things for the ‘first time’ and the ‘concept’ of endometriosis presented ere is
‘developed for the first time in Iran and maybe in the world’. As noted previously,
it is not at all clear what novel contribution to the data is being made here nor
what the precise meaning of the ‘concept’ is. This needs to be revised.
16. Discussion, paragraph 2 – it is said that severe headache has not been
associated with endometriosis before, but this is inaccurate. It is very often noted
as a complaint amongst women with the disease, as is migraine.
17. Discussion, paragraph 2 – There are some simplistic conclusions drawn
here. It is suggested, for example, that attention to pain severity may help in
diagnosis and management. This might contradict, however, women’s concerns
that doctors trivialize and normalize their pain complaints. The problem does not
necessarily therefore seem to be one about better understanding one’s own pain,
but about finding ways to connect with/educate medical professionals who may
be reluctant to consider such pain indicative of an underlying pathology. This is a
major cultural problem identified in other studies, without easy solutions, but
some of this complexity needs to be acknowledged.
18. Discussion, paragraph 3 – mention of the ‘perfect woman’ needs to be
revised for the reasons discussed earlier (on ‘femininity’).
19. Discussion, last paragraph – I do not consider it necessary to make a
concession regarding ‘recall bias’. This is only necessary if one takes a particular
(realist) approach on research to which I don’t think you need to subscribe.
20. Conclusion, paragraph 1 – there is mention of a clinical diagnostic
questionnaire right at the end. This is not described or discussed further, not
integrated with the data properly. If it is to be put forth as a genuine proposal, I
would like to see a much more detailed consideration of how this would work,
what it means, and so on.
21. Finally, in general, the draft manuscript requires a thorough edit before it will
be suitable for publication. There are some typographical and grammatical errors
and missing words and although I understand English is not the first language of
the authors, a proofread from someone with expertise in English might prove
useful.
Level of interest: An article whose findings are important to those with closely
related research interests
Quality of written English: Needs some language corrections before being
published
Statistical review: No, the manuscript does not need to be seen by a statistician.
Declaration of competing interests:
I declare that I have no competing interests.