Title: “I felt like she didn’t take me seriously”: A multi-methods study examining patient
satisfaction and experiences with Polycystic ovary syndrome (PCOS) in Canada
Version: 2 Date: 04 Jun 2021
Reviewer's report:
Thank you for the opportunity to review this manuscript. This is an interesting mixed-method
study that explores women’s satisfaction with the diagnostic experience and information
provided for PCOS. The study design has a good rationale, the methodology is adequately
described, including detailed description of the analyses, and findings have important practice
implications. However, the manuscript is currently far too long, with numerous areas
of repetition, which impedes the readability and accessibility of the manuscript. Specific
suggestions and comments to consider outlined below. I hope the authors find them helpful.
Abstract:
- Calling PCOS a lifelong condition seems odd considering symptoms only affect women during
reproductive years. PCOS may be associated with increased risk of metabolic complications,
but is more a risk factor than a condition affecting post-menopausal women.
- Please make it clearer which are the quant findings and which are the qual in the results section
of the abstract
Introduction:
- The statement that women with PCOS have greater rates of cardiovascular disease is not
correct. Indeed, the Schmidt reference cited found comparable incidence of CVD events in
PCOS compared to controls.
Methods:
- Thank you for including the interview guide – this is helpful
- How did you recruit via social media sites? Using paid advertising to general users or through
online support groups on social media?
- There is repetition in the methods e.g. “Interviews were digitally recorded and transcribed
verbatim. Twenty-five interviews were conducted over the phone between October and
December 2018, lasted 25–90 min and were audio-recorded and transcribed verbatim.”
Results:
- Why were some women screened out? Were they not eligible? Please provide more detail.
- Suggest including in text proportion of normal weight and overweight BMI categories in
addition to those with an obese BMI
- Table 4. Worth examining diagnostic experience by BMI, education and employment as well?
- The inclusion of a demographics table for the qualitative sample would be helpful
- Suggest combining figure 2 and 3 into the one figure for clear overview of qualitative findings
- Whilst well-written, rich and interesting, the qualitative results are far too long (almost 8000
words!), with several areas of repetition that can be reduced e.g. some quotes are used more than
once to explain the same finding (e.g. page 20 and 29)
- Did you get a sense that qualitative themes differed by symptom severity?
- Whilst a common theme seems to be how the diagnosis allowed women to take charge of
their health, it is unclear how this occurred. Was it the provision of treatment which reduced
symptoms? Did women describe undertaking healthy lifestyle changes? For example, “Mary
was very motivated to push for herself and advocate for her concerns because she wanted to
conceive again. Her efforts to self-advocate paid off and led to a diagnosis of PCOS which
allowed her to take charge of her health.” – I am interested to know how the diagnosis allowed
her to take charge of her health.
Discussion
- There is also a fair bit of repetition and duplication in the discussion, as facilitators and barriers
are often the inverse of each other. Suggest revising to reduce this.
- These results raise important issues, such as the crucial need for more reliable, credible
information at time of diagnosis, and for doctors to have an empathetic, patient centred approach.
In addition, these findings highlight the big issue of lack of screening for mental health issues.
Page 27 – should “increased risk of eating” be “increased risk of eating disorders”? Indeed, there
was evidence of disordered eating in the sample (e.g. binge eating). This illustrates how vital
it is to screen for mental health issues, particularly because generic lifestyle advice to exercise
more, eat less can exacerbate disordered eating.
- Strengths and limitations are well described, such as the potential for selection bias, which
may have resulted in recruiting women with more severe symptoms. One factor that is not
mentioned is the potential impact on findings of the interviewer disclosing her PCOS diagnosis
to participants. How may this have shaped discussions? The authors could consider adding a
reflexivity statement, but this should not be a requirement.
- One study that is not cited and draws many parallels (e.g. frustration that doctors focus only
on patients’ weight) is a qualitative study on the challenges with managing PCOS from both
women and clinicians’ perspectives. See Copp et al. The challenges with managing polycystic
ovary syndrome: A qualitative study of women’s and clinicians’ experiences. Patient Education
& Counselling. 2021.
- Throughout the manuscript, delayed diagnosis is frequently attributed (both by participants and
the authors) to lack of awareness and knowledge of healthcare providers. However, delaying
diagnosis could in fact be a deliberate decision of the healthcare provider, particularly for
adolescent girls. This is because the risk of overdiagnosis is extremely high in this age group due
to overlap with normal signs of pubertal development. Indeed, the recent international guidelines
caution against overdiagnosis in this age group (e.g. not referring for ultrasound due to polycystic
ovaries being a normal, age-dependent finding). However, the fact that women feel dismissed
indicates that doctors need to do a better job at communicating why they might need to wait
before an official diagnosis can be given, to see how symptoms develop/resolve.