Title: Dealing with lipoedema: women’s experiences of healthcare, self-care, and treatments—
a mixed-methods study
Version: 0 Date: 22 Mar 2024
Reviewer's report:
Review manuscript “Dealing with lipoedema: women’s experiences of healthcare, self-care, and
treatments—a mixed-methods study” for Women´s Health
Thank you for the opportunity to review this manuscript. My general impression is that the
manuscript addresses an important topic and the manuscripts reports an interesting study.
However, I have some suggestions for improvements. I hope the comments will be received as
constructive and helpful – that has been the intention with my efforts.
Title: A clear and concise title
Abstract: The background section is difficult to follow; for instance the paragraph in lines 20-22
– is this relevant here? And lines 22-23 – research about patients’ perspective is sparse – what
exactly related to the aim with the current study. In the results section, line 37 describes ‘barriers
to care’, but this is not clear.
Background:
Overall, the section needs to be a bit more specific on what studies about lipoedema exist and
what they have found and what gap the current study aims to fill in to.
The description of lipoedema is very detailed and could be shortened to ease readability – this
goes for the paragraphs describing the symptoms and the types and stages og lipoedema. Also,
references should be added to the section describing types and stages as lines 76-83 do not
include references. This information about types and stages is only to a limited extent used in
the manuscript.
Line 111 – the importance of early diagnosis has not been described earlier?
In the paragraph lines 119-130 it is not clear how this section is connected to the topic. I wat
confused about what purpose this section serves – should the description of PREM be stated
in the methods section? Moreover, what does the literature reveal about the involvement and
engagement in decision-making related to being treated for lipoedema?
Lines 133-134 – research form the perspective of patients is sparse: The sentence need to be
precise and elaborate what it is we have sparse research about related to the perspective of the
patients. Also, I suggest adding a reference.
In line 136 – the term ‘explored experiences in healthcare’ is rather vague and should be more
accurate.
Methods:
Study design:
Line 140 states that this is a cross-sectional study with a parallel non-dominant mixed-methods
design. Should the cross sectional design be part of the Mixed methods study? I would think
that the cross-sectional design was part of the mixed methods study.
The parallel non-dominant mixed methods design needs to be elaborated. Please add a reference
as well. Moreover, in lines 142-144 it is described how mixed methods research questions can
be exploratory, explanatory and confirmatory, but it is not presented, which of these three types
the current study adheres to. And how does this correspond to the parallel non-dominant design?
How integration was accommodated should also be addressed more thoroughly.
Line 151 mentions research questions, but these are not presented, which I believe they should.
Participants and setting:
Recommend adding how many of the 700 members that were eligible for inclusion. And if this
information is not available then make that clear to the reader.
Measurements and data collection:
The section was difficult to read mainly because it was not clear from the beginning that the
survey consisted of a validated and an unvalidated questionnaire. Also, I suggest to make it clear
which part of the aim/research questions the two parts address. It is a long section, and it would
increase readability and flow if the section was divided into smaller paragraphs.
Lines 164-165: states that ‘the survey’ was developed in collaboration with others. Is this the
first, second or both parts of the survey? In relation to how and when questions and items were
delivered? – including the open-ended questions. Where were these placed in the survey?
Line 180: suggesting a new paragraph for describing the second part of the survey.
Lines 192-193: how were items conceptualized? And which items? The 25 + 5 items? Or?
Lines 202-205: It is difficult to assess the qualitative data collection without presentation of
the questions that were included in the survey. A table could show the seven questions and the
question including the overall process of seeking care. Although I understand that this approach
helps to collect qualitative data, I do believe that the limited space in a survey to elaborate
responses and being asked further to provide nuances and deepened responses affects the quality
of the data. I recognize that this is briefly addressed in the section with limitations. However,
I believe this should be responded upon more thoroughly in the limitation section, and this
should include reference(s). In addition, the authors argue in the background section that the
perspectives of the patients are important- However, a data collection method with limited
opportunity to elicit these patient perspectives was chosen. It should be better justified in lines
146-148 why this approach was chosen.
Statistical analysis:
I suggest using the same wording as in the abstract were both descriptive and inferential statistics
are mentioned.
References should be added.
Qualitative analysis
Recommend increasing clarity of the heading for this section, as it is not clear and not aligned
with the previous heading.
The description of the process should be reworked to increase clarity about the analytical
process. For instance, it is unclear how codes were developed related to the NPS dimensions.
How did the authors come from codes to seven candidate themes? Also, describing how the
recursive process was undertakes during the sequential stages is relevant. I get a bit confused by
the lines 231-232 as the coding etc. should be aligned with the research questions and therefore
themes should address the RQs. Could the authors make clear what this means? Also, line 233
describes that the four themes were analysed in detail. What does this mean?
It is stated that qualitative data comprises 120 pages. Have all replied to all the questions, and
how much text was written to each question? Half a page for each participant to answer eight
questions that invite for descriptive answers is not much. Therefore, I am a bit sceptic for the
wording about rich and descriptive qualitative data as stated in the limitation section. Authors
write that the data was rich and descriptive (line 615), however, this is not clear to the reader
in the current manuscript.
Line 234: What is meant by ‘analytical’ narratives? They have not been mentioned in the
description above.
Ethical considerations: Were participants informed how their answers including the open-ended
answers would be used? Were they informed at which point, they cannot withdraw content to
participate? The sentences in lines 641-643 could be clarified according to these points.
Results
Lines 257-260. The sentence in the bracket – it is not clear and is this information necessary?
If yes – why?
Lines 263-268 – what is the purpose with these lines related to the aim of the study? In the
discussion section there seems to be discrepancy as line 543 states that the women were more
likely to be informed about lipoedema whereas lines 263-264 states that women first heard about
lipoedema. Is ‘being informed’ and ‘heard of’ the same in this context?
In lines 298-299 it is described that the lipoedema scored significantly lower on satisfaction.
It would be relevant with a table showing the results of the t-tests and the p-value to increase
transparency of the results.
In lines 294-295 & lines 318-319: Why is n= 244 and then n=209? Previously it was stated that
245 responded to the survey?
The reporting of the qualitative findings, a participant number should be added to the quotes to
document that different participants contributed. Also, it needs to be clear which paragraphs the
quotes are connected to. As it is now the flow is a paragraph, a quotation, a paragraph, a quotation
etc. without making it clear what is the interpretation of the quotes and what is the description
before a new quote and perhaps a new section. Are some of the paragraphs connected? The
structure needs improvements.
Would it be more appropriate that availability of lipoedema care (chasing shadows) was
presented before the dissatisfaction with the lipoedema care (lost in a maze)? Moreover, the
name Chasing shadows is not clear to me and could be improved. Likewise, two themes comprise
‘shadow(s)’ in the name, which is confusing.
The entire section reporting the qualitative findings needs amendment to ease clarity and
readability. Text is not always supported by the quotations, but I cannot figure out if this is due
to the difficulties to see which quotations are linked to which paragraphs and perhaps sections
within a theme.
Theme 1 and theme 3 – seem to be overlapping in the headings.
Theme 3 and 4 seem to be overlapping in content – they are not heard and left to themselves.
This is described in different ways in both themes, in my opinion. It may be due to repetitive
content in lines 420-429.
Discussion:
Line 449 beginning with This study… It is not clear how this first half of the sentence
corresponds to the aim of the current study as elucidation of barriers to tailored treatments was
not part of the aim? And, tailored lipoedema treatments have not been described?
Lines 472-476: Please add references or clarify the language if it is representing the authors’
viewpoints.
Line 478: Health outcomes related to what?
493-494: Please clarify the sentence – it is difficult to read.
The discussion comprises long paragraphs where it is difficult to identify where results/findings
and literature is presented and where the authors disseminate the newly gained insights.
Line 530: Please write what specific model instead of ‘this model’ to ease readability.
Lines 512-529: This section is very easy to read, and it is clear what results and findings showed
and this is clearly discussed with research literature and it is clear what the newly gained insights
and/or solutions encompass.
Lines 533-535: Could a reference be added? Also, in lines 587, 588 and 596.
Lines 556-562: It is not clear whether the references (reference 58, 59) support the findings from
the current study or if they serve to explain the findings? Please clarify.
Should the discussion address the educational level of the 245 participants as this may have
skewed the results.
Limitations:
In addition to the previous stated points about limitations in the study I perceive it relevant to
discuss further who may have responded to the survey as seen in surveys with similar sampling.
Line 617 states that the authors allowed room for additional comments – how many used this
opportunity, and did the opportunity provide valuable insights?
Conclusion:
Should be revised according to the revisions.