Reviewer's report
Title:Women's Constructions of the 'Right Time' to Consider Decisions about
Risk-Reducing Mastectomy and Risk-Reducing Oophorectomy
Version: 1Date:21 March 2010
Reviewer: Gwendolyn P. Quinn
Reviewer's report:
This was a very interesting article with great potential for clinical practice in the
oncology and psychosocial services field. Overall, it is well written and contains a
great detail of poignant rich descriptive information. There are a few major and
minor flaws that dampen enthusiasm for the paper however, if these are able to
be corrected it is likely this paper will be outstanding.
Major Compulsory Revisions
1. It is not apparent to this reader that the themes drawn by the authors come
from the quotes provided as examples. If one read the quotes only, the themes
are not a logical fit.
The categories such as “decisions fit into their lives, had enough time,
emotionally ready, sorting out conflicts, better options and health care system, all
make sense and seem reasonable qualitative indicators of the types of
psycho-social issues which surround decision making. However, they are not
well supported by the quotes
2. As a first example- the sub-heading “one decision at a time” : the authors state
“the women made decisions deemed most relevant… less disruptive.. .supported
by others, were made first.” Then we are shown one long quote ( several shorter
quotes or even a table may be more illustrative) in which the woman talks about
making no decision at all but vacillating between the choices?
3. In the sub-heading “when decisions fit into my life” the opening sentences
implies women had decisions about life events across the life span. However, the
majority of the summary, and the quote, focused on events related to
childbearing. The authors make an evaluative statement (not typically seen in
results section and better suited for the discussion) that “when … surgery was
seen to challenge the women’s self-concept...decisions were postponed.” If the
authors conclude that self-concept is the central theme it would seem better to
label the sub-heading as such rather than a “fit” with life events. Further, no
evidence is provided to support the self-concept theory.
4. “when I am ready to emotionally deal with decisions” – in this section, the
authors do a good job of showing an example about the interplay of fear and
rationality however, the example focuses on a woman showing up for a yearly
appt, not about a genetic counseling/testing decision. It is through this example
and others to be noted later that the lack of universality of the experience comes
through. The lack of psychological assistance and support for decision making is
very unclear and different than the protocols in the USA. The fact that data
collection took place within the Canadian health care system should be noted
and better described as this is a system unique to this country. While the authors
do note it as a limitation, it is a difference in health care systems on several
levels. It would appear also there are no or limited genetic counselors in BC?
5. The “Better Options” theme is less well described than all other themes. It is
unclear how women felt new technologies could be waited for given their fear of
cancer or recurrence? Again, when only one quote is provided it is difficult to
follow the logic of the authors. Additionally, the woman quoted is, of course,
relaying her perspective, but RRM is a recommended risk reduction strategy
according to several national and international guidelines. Perhaps what we learn
from this woman is not that she is waiting for a better option, but instead a
different option that feels acceptable, as it is clear that surgery is not. Many of the
quotes from these women show complimentary evidence to other studies
illustrating that prophylactic surgeries are terribly worrisome and understandably
the most drastic form of risk management. Therefore, it is not uncommon for
women to find a reason not to have surgery as opposed to truly weighing it as a
feasible option. Of course this reviewer has not read the transcripts and does not
see the full picture, but the portrait that is painted here through the quotes seems
to show women finding a reason not to have surgery as opposed to deciding
about risk reduction options and timing.
6. The abstract states “the time that lapsed between receipt of genetic test
results and receipt of RRM or RRO ranged from 3 months to 9 years.” Yes (and
this is not entirely clear) it seems none of the women interviewed have actually
made a decision or had surgery? They appear to have postponed decision
making or decided against surgery. If this is accurate, this is an important
distinction to make and perhaps helps frame the results more as issues typically
considered by women for whom risk reduction surgery has been recommended
and less about timing.
Other considerations:
1. Page 5 says “obtaining consultations with specialized health care
professionals may take months or years.” This is not the case in the US. It is
more likely that US woman lack the health insurance to seek these services than
that they are not available.
2. More details about the study participants are needed as the concept of a
“provincial hereditary cancer program” is not well understood. Where were the
woman recruited from? How was it known they had positive results? (this is
typically highly confidential information).
3. Page 6 says “the length of time since he women had undergone genetic
testing ranged from less than a year to nine years.” – this is different than the
data stated in the abstract.
4. Page 7 – how many people were involved in the data analysis? What were
their qualifications? Was inter-rater reliability established? How were
discrepancies settled?
Level of interest: An article of importance in its field
Quality of written English: Acceptable
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