Portal de Periódicos da CAPES

A patient perspective

2013; Elsevier BV; Volume: 27; Issue: 1 Linguagem: Inglês

10.1016/j.rbmo.2013.04.009

1472-6491

Martin H. Johnson, Sarah Franklin,

Primary Care and Health Outcomes

Amongst the mass of official published data on assisted reproduction treatment (ART) outcomes, there is one noticeable omission: the cumulative pregnancy/birth rate (often inappropriately called ‘success rate’) of women undergoing serial IVF/ICSI treatments. Thus, no recent publications from the UK Human Fertilisation and Embryology Authority (HFEA, 2012HFEA Fertility treatment in 2011: tends and figures. Human Fertilisation and Embryology Authority, London2012Google Scholar), National Institute for Health and Care Excellence (NICE, 2013NICE, 2013. Assessment and treatment for people with fertility problems. NICE clinical guideline 156. National Institute for Clinical Excellence, London. .Google Scholar) or the US Centers for Disease Control and Prevention (CDC, 2012CDC Assisted reproductive technology surveillance — United States 2009.Surveillance Summaries. 2012; 61 (Centre for Disease Control and Prevention, MMWR, November 2, 2012): 1-23Google Scholar) provide such data for IVF (although data for donor insemination are presented; NICE, 2013NICE, 2013. Assessment and treatment for people with fertility problems. NICE clinical guideline 156. National Institute for Clinical Excellence, London. .Google Scholar). The corollary of this omission is of course the absence of data on the cumulative non-pregnancy rate (so-called ‘failure rate’). So it is not possible to do more than guess at the number of women who find themselves in the position of Jane Everywoman, 2013Everywoman J. Cassandra’s prophecy: why we need to tell the women of the future about age-related fertility decline and ‘delayed’ childbearing.Reprod. Biomed. Online. 2013; 27: 4-10Abstract Full Text Full Text PDF PubMed Scopus (43) Google Scholar, who writes in this issue about her experience of infertility treatment in the UK and who shares some of her learning conclusions from this experience. In one sense, Jane Everywoman’s experience is of course uniquely hers, but as she says herself she wishes to use her experience to suggest more generally “modified public health messages and new approaches to sex education and health screening that may consequently help to truly empower tomorrow’s women (and men) to finally take full control over their reproductive lives…” We have invited six contributors to comment on Jane’s suggestions, each from a distinct perspective (Boivin et al., 2013Boivin J. Bunting L. Gameiro S. Cassandra’s prophecy: a psychological perspective. Why we need to do more than just tell women about age-related fertility decline and ‘delayed’ childbearing.Reprod. Biomed. Online. 2013; 27: 11-14Abstract Full Text Full Text PDF PubMed Scopus (20) Google Scholar, Dixon, 2013Dixon H. Cassandra’s prophecy: a response from a sex education perspective.Reprod. Biomed. Online. 2013; 27: 15-16Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar, Khalaf, 2013Khalaf Y. The trend of delaying childbearing – is there a simple answer to this complex problem?.Reprod. Biomed. Online. 2013; 27: 17-18Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar, Marteau, 2013Marteau T.M. Cassandra’s prophecy: a public heath perspective.Reprod. Biomed. Online. 2013; 27: 19-20Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar, Norcross, 2013Norcross S. Cassandra’s prophecy: education,education, education.Reprod. Biomed. Online. 2013; 27: 21-24Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar, Theodosiou, 2013Theodosiou A.A. Medic or mother? Exploring the relevance of age-related fertility decline to women in medicine.Reprod. Biomed. Online. 2013; 27: 25-28Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar). Here we offer some reflections of our own on the content of this ‘patient-led mini-symposium’. Although Jane’s experiences were entirely within the UK, and our respondents all reflect UK experiences, we feel that there is much of international interest to be learned from these papers, and we look forward to comments and international comparisons, which you can submit, either through letters submitted for publication or via our web pages on the online Forum at http://edwards.elsevierresource.com/resource-center. The pain felt by Jane pervades her text, although it is written dispassionately and constructively. It is our hope that the writing of this text was in part therapeutic and helped Jane to manage the transition from pain to acceptance. It is our fear that on reading her account in this journal, and the commentaries on and reactions to it, that the pain may be reawakened – for evidence shows that rarely does the sense of loss that can come from trying without issue to have child go away completely (Franklin, 1997Franklin S. Embodied progress: a cultural account of assisted conception. Routledge, 1997Crossref Google Scholar). So what to make of Jane’s situation? Two aspects shine through her account for us: first her isolation, which seemed to stem in part from a sense of ‘shame’. This shame appears to have been experienced because her expectations from her ‘sex education’ had led her to feel she was not a ‘proper’ woman (i.e. one who gets pregnant at the first time of unprotected sex) – and so that her body had ‘failed’ her. Nowadays, we are so used to being told that if we put in enough effort we will be rewarded with the desired outcome that even when things are beyond our control we can feel blamed for them. Whatever the underlying basis of this shame, that she felt unable to share her pain with anyone but health professionals led, unfortunately, to the second striking feature of her account: namely her unswerving faith in doctors. Which brings us to the crux of the issue. Did her doctors let her down and if so how and why, and what can be done about it? In her account (and it is her perception alone that we have to go on) they clearly did. Moreover, we can recognize in their answers the ring of truth about what she reports that they said. Thus, “[endocrine disorders] corrected by a pregnancy”, “wait two years”, “have patience” and “go home and relax” are all phrases used for many couples experiencing fertility problems. Likewise the prevailing atmosphere of positivity that she describes is common in fertility clinics with their pictures of babies and emphasis upon the benefits of IVF. While the staff of assisted conception units are understandably keen to help, and may rightly seek to encourage patients to remain optimistic in the face of the daunting challenges of treatment, these challenges are nonetheless considerable, and their outcomes highly uncertain. What is particularly unfortunate in Jane’s case is that the advice she received seems to have been offered without due regard for her personal, individual situation, and on the basis of a missed diagnosis of early menopause. Jane’s faith in doctors and health professionals thus does seem to have been misplaced. Through ignorance or lack of awareness her doctors let her down, and through insensitivity and lack of empathy she was similarly misled by health workers. But perhaps she was most let down by the UK Government and the National Health Service (NHS) by their failure to provide comprehensive infertility services? So are there general lessons to be learnt from Jane’s account and do we share her prescription? It is with some trepidation that we question whether Jane’s suggestions that the better provision of information to younger women/girls and men/boys is what is required, or will be effective (see also Dixon, 2013Dixon H. Cassandra’s prophecy: a response from a sex education perspective.Reprod. Biomed. Online. 2013; 27: 15-16Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar, Khalaf, 2013Khalaf Y. The trend of delaying childbearing – is there a simple answer to this complex problem?.Reprod. Biomed. Online. 2013; 27: 17-18Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar, Marteau, 2013Marteau T.M. Cassandra’s prophecy: a public heath perspective.Reprod. Biomed. Online. 2013; 27: 19-20Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar)? Why do we say this? First, there is already a lot of information available, a point made by both Khalaf, 2013Khalaf Y. The trend of delaying childbearing – is there a simple answer to this complex problem?.Reprod. Biomed. Online. 2013; 27: 17-18Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar, Boivin et al., 2013Boivin J. Bunting L. Gameiro S. Cassandra’s prophecy: a psychological perspective. Why we need to do more than just tell women about age-related fertility decline and ‘delayed’ childbearing.Reprod. Biomed. Online. 2013; 27: 11-14Abstract Full Text Full Text PDF PubMed Scopus (20) Google Scholar, as well as sources of advice there to be heard and support to be had, as pointed out by Norcross, 2013Norcross S. Cassandra’s prophecy: education,education, education.Reprod. Biomed. Online. 2013; 27: 21-24Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar. Second, there is abundant evidence that public health messages that focus on information giving are not generally effective at changing behaviour (Marteau, 2013Marteau T.M. Cassandra’s prophecy: a public heath perspective.Reprod. Biomed. Online. 2013; 27: 19-20Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar). For example, many health professionals and medical students are overweight or obese (Department of Health, 2009Department of Health, 2009. Cross-government obesity unit. Healthy weight, healthy lives: one year on. .Google Scholar, Frank and Segura, 2009Frank E. Segura C. Health practices of Canadian physicians.Can. Fam. Physician. 2009; 55 (810.e7–811.e7)Google Scholar, Miller et al., 2008Miller S.K. Alpert P.T. Cross C.L. Overweight and obesity in nurses, advanced practice nurses, and nurse educators.J. Am. Acad. Nurse Pract. 2008; 20: 259-265Crossref PubMed Scopus (118) Google Scholar), persist in drinking alcohol to excess (Brooks et al., 2011Brooks S.K. Chalder T. Gerada C. Doctors vulnerable to psychological distress and addictions: treatment from the Practitioner Health Programme.J. Ment. Health. 2011; 20: 157-164Crossref PubMed Scopus (47) Google Scholar, Brotons et al., 2005Brotons C. Bjorkelund C. Bulc M. Ciurana R. Godycki-Cwirko M. Jurgova E. Kloppe P. Lionis C. Mierzecki A. Pineiro R. Pullerits L. Sammut M.R. Sheehan M. Tataradze R. Thireos E.A. Vuchak J. EUROPREV network. Prevention and health promotion in clinical practice: the views of general practitioners in Europe.Prev. Med. 2005; 40: 595-601Crossref PubMed Scopus (230) Google Scholar, Rosta and Aasland, 2013Rosta J. Aasland O.G. Changes in alcohol drinking patterns and their consequences among Norwegian doctors from 2000 to 2010: a longitudinal study based on national samples.Alcohol Alcohol. 2013; 48: 99-106Crossref PubMed Scopus (21) Google Scholar) and even in smoking (Bateman, 2013Bateman C. Doctors’ lifestyles vital for SA’s health – global expert.S. Afr. Med. J. 2013; 103: 214-215PubMed Google Scholar, Saulle et al., 2013Saulle R. Bontempi C. Baldo V. Boccia G. Bonaccorsi G. Brusaferro S. Donato F. Firenze A. Gregorio P. Pelissero G. Sella A. Siliquini R. Boccia A. La Torre G. GHPSS multicenter Italian survey: smoking prevalence, knowledge and attitudes, and tobacco cessation training among third-year medical students.Tumori. 2013; 99: 17-22PubMed Google Scholar, Vanderhoek et al., 2013Vanderhoek A.J. Hammal F. Chappell A. Wild T.C. Raupach T. Finegan B.A. Future physicians and tobacco: an online survey of the habits, beliefs and knowledge base of medical students at a Canadian university.Tob. Induc. Dis. 2013; 11: 9Crossref PubMed Scopus (29) Google Scholar), whilst confronted on a daily basis with the evidence of damage. Indeed, as Theodosiou, 2013Theodosiou A.A. Medic or mother? Exploring the relevance of age-related fertility decline to women in medicine.Reprod. Biomed. Online. 2013; 27: 25-28Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar says “Recent data indicate that female doctors have children significantly later than women in the general population”, yet they are well placed to know the likely consequences of deferral. Perhaps the finding that, despite this delay, they then do not suffer lower fertility is because they have preferential access to ART or to sources of reliable advice and information should problems emerge? As Marteau et al., 2012Marteau T.M. Hollands G.J. Fletcher P.C. Changing human behavior to prevent disease: the importance of targeting automatic processes.Science. 2012; 337: 1492-1495Crossref PubMed Scopus (502) Google Scholar have shown, it is not information processed rationally and consciously that governs much of our routine behaviour but non-conscious influences from our surroundings. That is why the enforced wearing of seat belts reduces mortality among car occupants and the banning of smoking in public places has reduced respiratory disease. As Jane herself says “No-one in my wide and international social and professional circle had given birth before about 33. In media reports, numerous celebrities were also getting pregnant for the first time at 40+, often with twins”. Jane was living in a culture of late motherhood, which subconsciously she absorbed, a point easily overlooked by rational ‘evidence driven’ professionals (Khalaf, 2013Khalaf Y. The trend of delaying childbearing – is there a simple answer to this complex problem?.Reprod. Biomed. Online. 2013; 27: 17-18Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar). So, whilst we agree that improvements in school sex education (not least its effective provision) are desirable, perhaps by tweaking to discuss life-long fertility issues (Marteau, 2013Marteau T.M. Cassandra’s prophecy: a public heath perspective.Reprod. Biomed. Online. 2013; 27: 19-20Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar) rather than full on stressing of fertility decline (when some 20–25 years in the future), we agree with Dixon, 2013Dixon H. Cassandra’s prophecy: a response from a sex education perspective.Reprod. Biomed. Online. 2013; 27: 15-16Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar that this is likely to be at best patchily provided and ineffective. Rather our focus is on the quality and organisation of service delivery. A better understanding of what evidence-based medicine really consists of (Johnson, 2013Johnson M.H. The early history of evidence-based reproductive medicine.Reprod. Biomed. Online. 2013; 26: 201-209Abstract Full Text Full Text PDF PubMed Scopus (6) Google Scholar), a better education for general practitioners in infertility matters, and more effective training (particularly for those working in fertility clinics) in empathic communication skills represent three important areas of potential improvement. A change in emphasis in pregnancy advisory services so that they advise how to get pregnant as well as how not to get or to stay pregnant may also be of benefit. Better financial support for bodies like the Progress Educational Trust to enable them to spread their messages more effectively and widely would be helpful. But above all better NHS provision of fertility services to relieve some of the emotional and financial stresses on ‘future Janes’ is critical to the avoidance of further cases such as hers. We are sending our editorial together with Jane Everywoman’s article plus the six commentaries to the following bodies in the hope that they will respond with replies that will be published in a later issue: The HFEA, the British Medical Association, the Family Planning Association, the Royal College of Obstetricians and Gynaecologists, the Royal College of General Practitioners and the Chief Medical Officer at the UK Department of Health. But we also want to know what you think? Please let us and our readers know, especially through the Robert Edwards Resource Centre on the online Forum at http://edwards.elsevierresource.com/resource-center.