Reviewer ’s report  
 
Title: Using the Heath Belief Model to explore why women decide for or against the removal of 
their ovaries to reduce their risk of developing cancer  
 
Version: 0 Date: 18 Jul 2018  
 
Reviewer: Natalie Evans  
 
Reviewer's report:  
 
I enjoyed reading this article, the subject of which deserves more attention in the literature. The 
article is  valuable in revealing women's experiences of decision -making in the context of high 
risk for ovarian cancer, particularly the lack of decision -making support and preferences for 
information delivery and. The use of the Health Belief Model (HBM) is appropr iate.  
 
I have quite a few comments, but they are mostly minor in nature.  
 
General comments  
1. The HBM is used quite narrowly - looking only at the decision for prophylactic surgery, 
rather than exploring all practices perceived by women to be preventativ e, including screening 
and lifestyle factors. This might be appropriate given the scope of the article, but it also means 
that attitudes and beliefs related to broader preventative strategies that might influence a surgery 
decision are neglected.  
2. There is a lack of transparency about the composition of the sample of 18 women. For 
example, how many pre -menopausal women are interviewed?  
3. There is a lack of recognition throughout of the varying risks related the gene mutation. 
The age related risks and th e clinical recommendations for age of surgery for BRCA1, BRCA 2, 
and Lynch are different. The risks and recommendations for those with no known mutation but a 
first degree relative are also very different.  
  
Comments and suggestions for each section  
 
 
Abst ract 
The authors state that participants appreciated if their doctor explained their treatment choice. 
This is of course, a very nice recommendation - it is also a basic requirement for informed 
consent.  
 
Introduction  
Pg 4 - line 30 - The authors state that most research is from outside of Australia - please see the 
work of Nina Hallowell and Bettina Meiser.  
 
e.g. Hallowell, N., et al. (2012). "Looking different, feeling different: women's reactions to risk -
reducing bre ast and ovarian surgery." Familial cancer 11(2): 215 -224. 
 
Bettina Meiser - https://research.unsw.edu.au/people/professor -bettina -meiser  
 
Methods  
Pg 5 line 60 - typo BRCA gene is called 'BCRA' gene throughout.  
 
The method of recruitment - with participants  being invited by clinicians with access to patient 
records - is great. Nice to see an attempt to sample all women with a prophylactic oophorectomy 
indication.  
 
Small point about anonymity - were only voice recordings made, or also recording of the video 
conferences? Were voice/video recordings - which are identifiable - destroyed after 
transcription?  
 
Pg 10 Line 53 - reference needed.  
 
 
Results  
 
Participant characteristics table  
 
What is the age range? How many premenopausal women were interviewed? The co nsequences 
of oophorectomy are very different for this group. Number of people per age category e.g. 30 -39, 
40-49 etc, would be informative.  
 
The majority, 67% had no identified mutation. Had these women been tested? These women may 
not have a high risk. T heir health beliefs and decision -making might be very different to those of 
women with an identified high risk mutation.  
 
What about other surgeries? Did any participants have previous cancer diagnoses themselves? 
Prophylactic mastectomies? This is all use ful to know.  
 
HBM domains  
 
For the quotes - I'd like to see a participant number and perhaps risk indication.  
E.g. Participant 1, 34, BRCA2 carrier, oophorectomy  
 
This would let me know when quotes are from the same participant and give me more context.  
 
Perceived severity  
None of the quotes about the perceived severity of ovarian cancer seem to come from those who 
didn't opt for oophorectomy.  
 
Some quotes need more explanation. E.g. end page 12 - Quote from 34 year old - "it's not really 
realistic"? Was  this followed up? What isn't realistic? The perception of the risk?  
Perceived susceptibility  
The authors state that not all BRCA women opted for surgery - but not all BRCA women are 
recommended to have oophorectomies. What are the guidelines for BRCA2 wo men in Australia? 
In the Netherlands, for example, oophorectomy is recommended for BRCA2 women 40 -45. 
There are no BRCA1 women in the sample so recommendations for them are not relevant here. 
When the risks are different and the clinical recommendations ar e different you cannot lump 
these groups together.  
 
Did you ask people what they thought their risk was? Was it in line with the current evidence? 
Where did they get their risk information from? Did the older women who had oophorectomies 
go to the doctors  themselves or was it suggested by a HCP?  
There appear to only be quotes  from older women with low risk in the perceived susceptibility 
section.  
 
Perceived benefits  
The first quote is not reflective of the text:  
But if I was living in fear and I was worr ied every day of my life that I may get cancer again then 
I probably would have had surgery. (patient, 60 years)  
 
There appear to be a lot of quotes from a 34 year old patient. Is this the same participant? 
Participant numbers would be useful.  
 
Perceived b arriers  
Small point, the use of the word 'cost' in the following sentence is poorly chosen as it can be 
confused with economic cost. "Women identified a number of barriers which they felt increased 
the cost of having the surgery".  
 
Another quote in need o f further explanation:  
The risk factors of osteoporosis and that sort of thing that was relevant to me. I thought, oh, well 
maybe it's better if there's something else that we can do, as opposed to then needing to take 
hormone replacement and all that sor t of stuff, which puts you at higher risk of breast cancer 
once again anyway. (patient, 34 years) I don't understand this - what does the participant mean 
by 'if there's something else that we can do'.  
 
The authors state that "Many" younger women were advised by their treating doctor to have their 
children first and then undergo the surgery. But I still don't know how many women in 
childbearing years are in the sample - if there is only one 34 year old - then there might just be 
one! 
 
The authors state that "A number of women reported that they had not been offered a choice of 
whether to have the surgery. They felt a lack of control over the decision -making process and 
wished that their doctor had explaine d the reason for this lack of choice more in detail." 
However, doctors may not have discussed options not recommended for younger women. Indeed 
I think women should be made aware of recommended actions for the future, but that doesn't 
necessarily mean 30 y ear olds BRCA2 women should be offered oophorectomies - because an 
offer of a treatment in a health care setting sometimes implies a recommendation. Again, it 
should be linked to existing guidance for BRCA2/Lynch Syndrome women in Australia.  
 
Perceived sel f-efficacy  
 
Pg 18 - line 26 - first mention of screening (presumably vaginal ultrasound, as it is described as 
invasive). Some women however may also get CA125 marker screening - some high risk women 
access this privately even if it is not recommended by t heir health care professional. Without 
knowing other preventative practices, it is difficult to fully understand women's 'health beliefs' 
and weakens the argumentation for the use of the HBM.  
 
Modifying factors and cues for action  
The authors state that w omen in their 30s based their decision for surgery based on ovarian 
cancer anxiety. But what about their perceptions of a subsequent decrease in breast cancer risk - 
did this influence any of the younger women's decision -making?   
 
 
The decision -making proc ess 
The time women took to make the decisions was said to differ considerably, and that this was to 
do with personal factors. But did it also have to do with risk factors? High risk women with a 
high age related risk might feel a greater urgency to take pr eventative measures.  
 
Discussion  
The comparison most frequently made with the published literature throughout is with a 2009 
syst review of decision making in hereditary cancer. There is a lack of comparison with more 
recent literature. See Dean, Hesse -Biber, Hallowell etc.  
 
The authors state that previous qualitative literature lacks a guiding theoretical framework, 
however Dean (2017) used the Theory of Motivated Information Management whereas 
Hallowell (2006) drew on drew on sociological theories of ris k. Given the rationale for the study 
- to explore decision -making in a theoretically guided manner - what does using the HBM add? 
Do the results differ greatly to those of other studies using other theoretical frameworks?  
 
The introduction also gives a ra tional for the qualitative approach to "enhance our understanding 
of existing quantitative data on patients' views and experiences" - but the authors do not do this 
in the discussion. Comparison with related survey studies is appropriate - see Hesse -Biber and 
An (2016) and Claes et al (2005), which uses the HBM.  
 
The authors highlight the influence of familial and online experiences. The importance of these 
in decision -making needs further exploration.  
 
Implications for clinical practice  
 
The authors state  that "Women appreciated being provided with a choice of whether to have an 
oophorectomy. Although some clinicians may perceive that having their ovaries surgically 
removed is not an option for younger patients who still wish to have children, women in our  
study indicated that they would still like to receive comprehensive information on the potential 
risks and benefits of the surgery, as well as details on why their doctor thinks they were not 
eligible for this procedure." Women need information about inte rventions indicated by age 
related risk, and they need an overview of this as soon as they are identified as being at high risk 
of ovarian cancer, whatever their age.  
 
The authors also state that "Many women reported a lack of information on the risks and  benefits 
of having an oophorectomy. A documentation of what had been discussed during the 
consultation could help women recall and use the information provided to them." This very 
generously assumes that all risks and benefits have indeed been communicate d during the 
consultation, and it is only women's recall or physicians "communication style" that is 
problematic. I fear this is not the case.  
The lack of use of existing decision -support is a very interesting finding and deserves more 
emphasis.  
 
 
References  
 
Dean, M., et al. (2017). ""When information is not enough": A model for understanding BRCA -
positive previvors' information needs regarding hereditary breast and ovarian cancer risk." 
Patient education and counseling 100(9): 1738 -1743.  
  
Erna Cl aes, Gerry Evers -Kiebooms, Marleen Decruyenaere, Lieve Denayer, Andrea Boogaerts, 
Kristien Philippe & Eric Legius (2005) Surveillance Behavior and Prophylactic Surgery After 
Predictive Testing for Hereditary Breast/Ovarian Cancer, Behavioral Medicine , 31: 3, 93 -106 
 
Hesse -Biber, S. and C. An (2016). "Genetic testing and post -testing decision making among 
BRCA -positive mutation women: a psychosocial approach." Journal of genetic counseling 25(5): 
978-992. 
 
Hallowell (2006) Varieties of suffering: Living with  the risk of ovarian cancer, Health, Risk & 
Society, 8:1, 9 -2 
 
Hallowell, N., et al. (2012). "Looking different, feeling different: women's reactions to risk -
reducing breast and ovarian surgery." Familial cancer 11(2): 215 -224. 
 
Are the methods appropriate and well described?  
If not, please specify what is required in your comments to the authors.  
 
Yes 
 
Does the work include the necessary controls?  
If not, please specify which controls are required in your comments to the authors.  
 
Yes 
 
Are the conclusions drawn adequately supported by the data shown?  
If not, please explain in your comments to the authors.  
 
Yes 
 
Are you able to assess any statistics in the manuscript or would you recommend an  
additional statistical review?  
If an additional statistical review is recommended, please specify what aspects require further  
assessment in your comments to the editors.  
 
Not relevan t to this manuscript  
 
Quality of written English  
Please indicate the quality of language in the manuscript:  
 
Acceptable  
 
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