A recently published qualitative
study (1) on the perceptions of young people diagnosed with cancer and their future
fertility, for which I was the lead author, prompted media attention in the
context of male and female patients receiving different information with regard to fertility preservation.
The Royal College of
Obstetricians and Gynaecologists, the British Fertility Society, and the
American Society for Reproductive Medicine all support the concept of providing
every patient of reproductive age with accurate information about the potential
risk of impaired fertility after treatment for cancer, irrespective of whether
local facilities for gamete cryopreservation exist. In reality, the
immediate emphasis is often on treatment, with little time available to discuss
future fertility or options for fertility preservation. Logistical
barriers and timely patient referral (including coordination of care between
specialties) can also limit patient access to the available options (2).
for young women and girls who require urgent cancer treatment, have no male
partner or are unable to undergo hormonal intervention are clearly limited in
the best of circumstances. Still, it remains important for clinicians to consider the effects of chemo and/or radiotherapy on future reproductive
Our study shows that
significant gaps in the information provided to young women diagnosed with
cancer exist and suggests a need for an early appointment with a fertility
Previous research (3) considered 'the deep human
desire to have a child' a challenge for patients and clinicians alike and
highlighted the fact that concerns about fertility are similar in both genders
but opportunities for intervention very different. Bury's
theory (4) of 'biographical disruption' (the loss of the capacity to anticipate
and package one's life according to a pre-existing template) can be experienced
as a devastating rupture, which impacts negatively on an individual's
psychological health and well-being (5).
In our study, the tension between the
clinical (cancer diagnosis and emphasis regarding the urgency of treatment) and
the social (in respect of relationship formation, consolidation and
reproductive decision-making) was thrown into sharp focus. Young adults (in particular
men) who might be in a relatively new relationship were suddenly faced with
having conversations about their reproductive intentions and found themselves
subject to 'biographical acceleration' as they were plunged into hypothetical
and sometimes actual decision-making as a couple (5).
Estimates suggest that in 2010, one in 715 people in
the UK had survived cancer during childhood. Healthcare professionals note a
growing emphasis on 'quality of life' after cancer survival (6). Yet a recent survey
of more than 300 health care practitioners conducted by researchers at the
Royal Free Hampstead NHS Trust, found that fewer than 40 percent considered
discussion of future fertility in women diagnosed with breast cancer (7).
Such information is
indeed timely given the partial review of the National Institute for Health and
Clinical Excellence (NICE) guideline on fertility (8) has just been released
for consultation. Although the guideline development group considered the
effects of cancer on fertility in the review process, its remit was 'to examine
the effectiveness of different methods of cryopreservation' in the context of
preservation of fertility before starting chemo or radiotherapy. It was
disappointing that 'quality of life' and associated fertility did not merit discussion
and no qualitative studies were included in the review (9).
Professor Jane Noyes, the lead convener of the Cochrane
Qualitative Research Methods Group has noted a growing appreciation for qualitative studies, alongside
quantitative research, as part of the evidence base for commissioners and
policy makers (10). Indeed the Cochrane Collaboration now acknowledges the
limitation imposed on policy and decision-making by using quantitative data
My co-authors and I do not advocate 'cryopreservation
for all' and have the utmost respect for the clinician's role in deciding patients'
suitability for fertility preservation but we do uphold a multidisciplinary
approach to the management of this unique patient group. Such collaboration
should permit discussion (considering the qualitative evidence available) and a
range of options for patients. To this end, we welcome the recommendations put
forward by the NICE review guideline development group.
is no doubt that the multidisciplinary response has been in accordance with the
professional 'guidance' mentioned earlier, however clinicians appear to be unclear
as to what constitutes 'experimental' techniques for fertility preservation. The field of 'Onco-Fertility', as it is known,
is in a stronger position now than it has been for over a decade. Perhaps we
need to consider the three major gaps highlighted by the 'Onco-Fertility
Consortium' (2) in the US: surviving cancer (and the importance of expectation of
reproductive function and family); science and emerging technology (working
together to improve its efficacy); and resource allocation (in supporting a
collaborative 'National Business Case' for utility).
Through collaboration, we
can educate young people diagnosed with cancer to formulate their own opinions
about the science, often portrayed as controversial.