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Egg donation: The challenge of repeated treatment failures and the impact of a multi-disciplinary support team

Reilly P, Walster S, Anderson V, Gillott D, Pepperell M, Iammarrone E, Abayomi D, Atalla N, Menabawey M, Dirnfeld M.
Introduction

The effective delivery of modern infertility treatment raises important questions about the psychological impact and support needs of patients undertaking treatment, in particular egg donation in the UK and abroad - Overseas egg donation is a contentious issue for many clinician and counselors per-se, but it further adds to the stresses on patients with its extra logistical and  financial pressures as well the fact that there may be a tension between their own deep rooted wish to conceive and the knowledge that many people question the morality of paid egg donation.
                                                                                                                                                                                            Mindes et al (2003) identified the important role of social support through fertility treatment, and Boivin (2005) clearly showed the link between stress and the efficiency of treatment                                                                                                                                                                              Therefore the team at the Bridge Centre considered how best to support this particular group of patients whose stress were perhaps even higher than those who were receiving fertility treatment in their own country.                                                                                                                                                                                A protocol was implemented using a dedicated team which included clinician, nurse, administrator, and counselor whose aim was to maintain continuity of care and support throughout treatment both in the UK and when abroad.                                                                                                                                                                              This study analysed its effectiveness, specifically for those patients who undertake multiple treatment cycles, and discusses the findings in relation to other current research.  

Materials and Methods
Data were collated on success rates versus number of treatment cycles from 194 patients who undertook egg donation over a period of 3 years From these a randomised sample group of 73 women was contacted in the period between embryo transfer and day 14 pregnancy tests, 62 of these women participated and the data analysed in three ways:                                                                                                                                                                                     (i) Qualitative questions using Likert scale responses (score 1-5) to ascertain the patients support needs and where that support came from.                                                                                                                                                                         (ii) The forgoing was repeated for those patients who undertook treatment more than once, in order to ascertain any changes in their perception following failure to conceive.                                                                                                                                                                                (iii) Completion of a Quality of Life questionnaire.

Results
                                                                                                                                                                                         From the 194 women who had a fresh or frozen embryo transfer following egg donation. 115 had ongoing pregnancies (58%) of whom 77 have given birth (48%) whilst 38 pregnancies are still ongoing.                                                                                                                                                                                 71 of the 194 patients had one cycle, 37.9% clinical pregnancy (CP) rate. 70 patients had 2 cycles, (37.5% CP). 26 had 3 cycles, (40.0% CP). 18 had 4 cycles, (30% CP); 7 underwent 5 cycles, (42.1% CP) and 2 patients had 6 cycles, (50% CP),                                                                                                                                                                                   1 – During the first treatment cycle 86% of patients said their main support was from their partner, with an average rating of 4.6 (max=5). 79% also claimed their friend as main support.  Quality of life questionnaire revealed a rating of 3.9.
2 – Of those women whose treatment had failed and had a second cycle, first line support changed from their partners at 81% to a friend, rated 89%, 4.7
3 – Of those who had a failed second cycle and undertook a third, there was no change in the support structure, as there was not for those taking further cycles, however the quality of life questionnaire revealed a decrease to 3.1                                                                                                                                                                                     4 – When asked to rate the dedicated team there was no significant difference between any of the seven male and female specialists :- 2  Doctors, 2 Nurses, 2  Administrators, and 1 Counsellor, overall rating being 4.7. This remained the same for patients having up to 2 cycles but for those having more cycles, the rating dropped to 1 rating                                                                                                                                                                                     5 – Those patients who did not conceive in their first ED cycle undertook a second. Similarly, most patients who experienced a second failed cycle undertook a third.
6 – A critical questions to patients was: “Was it all worth it?” 89% answered “yes”.      
                                                                                      
 
Conclusion.

 
This study shows that a protocol enabling continuity of care by a dedicated team of specialists has a positive impact on ED patients. Their in-depth knowledge of patient’s special needs enabled more efficacious treatment, particularly with regard to the longer duration in treatment, due to repeated failures.
These findings also highlight the number of women who identified a “female best friend” as their dominant social support, underlining gender issues in communication.
Our study suggests that the drop out rate from an ART programme can be used as a powerful quantitative tool to analyse the quality of care of the multidisciplinary staff; this supports the findings of Cousineau and. Domar (2007).
The literature review also led to support our sense in the team, that the prevailing psychological constructs and personality types of the patients may also have a significant impact both on the length of time a patient was prepared to endure cycles of treatment, (Boivin 2005) the likely medical response to that treatment, (Lancastle and Boivin 2005) and also to how they were mentally and emotionally able to cope with ultimate treatment failure (Daniluk and Tench 2007).
Thus, the concept of dedicated seamless support may even be expanded to include an initial assessment of the emotional or problem solving coping strategies of the patients, and a support regime which helped offer psychological coping techniques throughout the course of fertility management. This already exists in some form as the centre counsellor is on hand to offer support and specific therapeutic assistance e.g. deep relaxation and hypnosis, to the patients throughout the overseas visits to the clinics  Moreover both Daniluk and Tench (2007) and Cousineau and. Domar (2007) have identified and quantified the long term effects of unsuccessful treatment programmes on patients including the figure of nearly two thirds of males suffering the experience of depressive symptoms, and long term poor physical and mental health.                            
This ongoing research has been, and remains focused on mitigating the stress experienced by patients, and reconnecting with them at a “humanistic” level, recognising the emotional and psychological experiences which we have shown impact on their lives, and indeed to some degree on the medical outcome itself.

Reference:
 
 
Boivin J PhD (2005) Infertility: related stress in men and women predicts treatment outcome  1 year later  Fertility and Sterility  83:6 pp.1745-1752                                                                                                                                                                                                          Cousineau TM PhD.  Domar AC PhD (2007) Psychological impact of infertility Best Practise and research in  Clinical Obstetrics Gynecology .21:2 pp.293-308.  
Epstein (2006). Making communication research matter: What do patients notice, what do patients want, and what do patients need?                  
 Patient education and counselling 60:3 pp.272-8  
Lancastle D  Boivin J (2005) Dispositional optimism, trait anxiety, and coping: Unique or shared effects on biological response to fertility treatment?  Health  Psychology  24:2  pp.171-178
Mindes EJ  Ingram KM  Kliewer W & James CA (2003)  Longitudinal analysis of the relationship between unsupportive social interactions and psychological adjustment among women with fertility problems          
Social science and medicine  56:10 pp.2165-2180
 Pook M Krause W & Drescher S (2002) Distress of infertile males after fertility workup: a longitudinal study  Journal of psychosomatic research  vol. 53  pp.1147-1152

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CONTINUED

David Prever was 39 when he got the telephone call. “We had been
married a year and my wife had decided we should get some tests. I
did not think it necessary because it was so soon. We’d moved house
and changed jobs, and at 39 and 37 it was bound to take a bit longer,”
says Prever, a writer. But he went along for tests and soon after, the
doctor called with the results. “Both our phones were on hands-free
and the sound was bit muffled. I did not quite understand what he said
at first so I asked him to repeat it. He shouted ‘severe impairment.’
“The words seemed to bounce round the room. I’d heard the first
time of course but I couldn’t quite believe what he’d said.” Different
ways of coping Prever and his wife Victoria, a food writer, reacted differently.
While she found other women to talk to, he initially coped alone.
“The male approach is to find out the facts, call for a recount, a replay, or
to blame the referee. I looked for people to blame or even sue. “I put my
head in the sand, worked early and late, told no-one and just got on with brave
male face-style.” They started IVF and Prever felt guilty about putting his wife
through so many medical procedures and angry with the clinics, the drugs
industry and himself. Happy ending After five IVF cycles, the couple
became pregnant and their son was born. His sister was born in 2010 from
an embryo frozen before her brother’s birth. Prever and his wife remembered
the experience so well, they decided to make their story public so others would
know they are not alone. They now run a website www.multiplymagazine.com to
help others in the same situation.

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6 • JULY 2012 GUARDIAN - AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

Breaking the Silence about male infertility

For many men infertility is still a taboo subject. “When a man is diagnosed
with fertility problems it is a tremendous blow, and he is not
likely to want to talk about it. Initially he tends to go into denial,”
says Pip Reilly, the psychotherapist who runs www.mensfe.net,
a website and forum designed to help men research and talk about
infertility issues. Ways of dealing with it Men and women have different
ways of coping. Men usually need to control the situation and take
action to find a solution, perhaps by lone research on the internet.
Women want to understand the situation, which requires communication,
and is the first stage of acceptance. “Couples tend to go off into separate mental corners,
which can affect the communication in the relationship,” says Pip Reilly.
Following denial, men commonly show anger, often in consultations
with clinicians. This is the first coping strategy they use to control of their feelings of loss.
Anger is not ‘wrong’, but a step in the grieving process that can lead to acceptance and understanding.
“Handled correctly by a counsellor anger can be used to take a man forward safely,” says Reilly.
 “Failure to handle anger can ruin relationships. There are no figures for the number of couples
 with fertility problems who eventually split, but I think 15 per cent would be a conservative estimate.”
Following anger, men experience infertility as a loss, and feel shame about not being able to
conceive naturally, and thus putting their partners through diagnosis and treatment. “They will
often do anything to support the woman and only later think about themselves,” says Reilly.
The importance of support NICE guidelines state that clinics should offer counselling to people
with fertility problems but the service is not always satisfactory. While 80 per cent of
women accept counselling, only 20 per cent of men do. “Over 90 per cent of counsellors are
women, and some men feel reluctant to open up to them,” says Reilly.
Clinics and GPs do not always treat men in a sensitive way. Semen test results are sometimes
sent by post, so a man can learn of his infertility with no support at all. Best practice
would see men invited back to the clinic to get results, so they can ask questions and be offered support.
Overall Reilly advises men with infertility problems to get practical information to help them understand
their options — there are several support organisations. “Ask for counselling to help you
cope and try to do all the things you normally do together as a couple,” he says. “Don’t let infertility and its
treatment take over your life.”
■ Question: Why do men seem so reluctant to talk
about infertility?
■ Answer: There’s a host of reasons for male silence — and men often suffer as a result.

Pip Reilly
Fertility counsellor and Psychotherapist
Mensfe.net

LINDA WHITNEY
info.uk@mediaplanet.com

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Men without children are 'more depressed and sad' than childless women
•   Men are almost as likely as women to want children, say British researchers
•   Also feel more isolated, depressed and angry if they don't have them 
•   Main reasons men want children are 'cultural' and due to family pressures
•   For women, it is more about personal desire and biological urge
By Anna Hodgekiss
PUBLISHED: 00:02, 3 April 2013 | UPDATED: 00:28, 3 April 2013
Men without children are more likely to suffer depression about the issue than their female counterparts.
British researchers found that men are almost as likely as women to want children, and they feel more isolated, depressed, angry and sad than women if they don't have them.
The research, due to be presented at the British Sociological Association annual conference in London today, also found that the influences on men and women who wanted to have children varied.
Childless women were more likely to cite personal desire and biological urge as major influences, compared to men. Men were more likely to cite cultural, societal and family pressures than were women.
Robin Hadley, of Keele University, found that 59 per cent of men and 63 per cent of women said they wanted children.
Of the men who wanted children, half had experienced isolation because they did not have any children, compared with 27 per cent of women.
Thirty-eight per cent of men had experienced depression because they did not have any children, compared with only 27 per cent of women.
One in four men had experienced anger because they did not have any children, compared with 18 per cent of women, while 56 per cent of men had experienced sadness because they did not have any children, compared with 43 per cent of women.
However, no men had experienced guilt because they did not have any children although 16 per cent of women had.
 Mr Hadley said: 'There is very little research on the desire for fatherhood among men.
'My work shows that there was a similar level of desire for parenthood among childless men and women in the survey, and that men had higher levels of anger, depression, sadness, jealousy and isolation than women and similar level of yearning.
'This challenges the common idea that women are much more likely to want to have children than men, and that they consistently experience a range of negative emotions more deeply than men if they don't have children.'
He carried out his survey of 27 men and 81 women who were not parents using an online questionnaire among people aged 20 to 66, with an average age of 41.
But when it came to men who already had children, the tables were turned. Nearly 60 per cent of mothers wanted more children, compared to 55 per cent of fathers
Just over 80 per cent were white British, 69 per cent had degrees, 69 per cent worked full-time and 90 per cent were heterosexual.
But when it came to men who already had children, the tables were turned.
Mr Hadley also surveyed another 125 men and women who already had children to find out whether they wanted more. He found that 59 per cent of mothers wanted more children, compared to 55 per cent of fathers.
He said the women who wanted more children, when they thought about not being able to have them, had higher levels of anger, depression, guilt, isolation, sadness and yearning than men.
In research carried out since his study, Mr Hadley has interviewed involuntary childless men.
Among them was Russell who told him: 'I'm 55, the light's been getting dimmer and dimmer and dimmer of me ever being a father, to the point now where it's not going to happen.'
George, 60, said: 'If you don't have children or grandchildren then that dimension of your life is missing.'
Some men admitted that shyness was a factor in not developing relationships that led to children

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By Robin Hadley
 03 Apr 2013
When I was a teenager and my parents wanted to stop me doing something, they’d always come out with the same thing. “You’ll have to make these decisions when you’re a parent,” they would say. “It’s not easy. You’ll realise that when you have children of your own.”

I’m 53 now and I’m not a father. I never will be. I am happily married – to my second wife – and we have no children. It’s not that we didn’t want any; since my mid-thirties, I have been broody, desperate for the kids that I watched my friends and colleagues having over the years. I always assumed it would happen. But, for me, it was never the right time.

The study reported in yesterday’s Daily Telegraph, which found that childless men can be just as broody as women – and, indeed, are more prone to feeling depressed and angry about not having kids – was part of my PhD research project at Keele University. For it, I interviewed men who, like me, long to be fathers and have felt utterly devastated when it hasn’t come to pass.

I married my first wife when I was 26; she was five years younger. We got engaged within six months and married shortly afterwards. We bought a three-bedroom house in Rochdale, outside Manchester, and started trying for kids. At the time, I remember thinking: “I’m going to be a father. I’m going to have to provide for my child.” So I went into overdrive at work – I was a technician at Manchester University – to try to get a promotion. Four years passed, we never had children and eventually the marriage failed.

Afterwards, I was stuck with the house, rattling around on my own. It was a macho thing – I can survive, I thought, I can do this. In reality, it was all a bit sad. Meanwhile, all my peers were getting married and having children – having a life, I suppose. When I was 35, I got into a relationship with a great woman. At one point, she said: “I’d like to have children with you.” I was so ready then. I yearned for a son or daughter. But, sadly, we split up soon afterwards.

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Mapping men’s anticipations and experiences in the reproductive realm: (in)fertility journeys

Lisa Hinton


.

Abstract

This paper examines men’s experiences of fertility/infertility against a backdrop of changing understandings of men’s role in society and medical possibilities. It presents findings from two qualitative research projects on men’s experiences of engagement with reproductive health services as they sought to become fathers and anticipate impending fatherhood. The findings from both projects provide insights into men’s experiences of (in)fertility and their engagement with services set against cultural ideals of masculinity. Discussions of reproduction have historically focused most centrally upon women’s bodies and maternal processes, leaving little space for consideration of men’s experiences and perspectives. While women’s experiences of infertility/fertility have been characterized in relation to productive or faulty biological processes, male infertility has been largely invisible and male fertility typically assumed. This context provides a difficult terrain for men in which to contemplate the potential of not being able to father a child. The findings discussed in this paper illuminate the ways in which men talk about and make sense of their reproductive journeys. In doing so, it challenges current understandings of masculinity and reproductive bodies and highlights the need to rethink how men are treated in reproductive spheres and how services to men are delivered.

This paper examines the results of two interview studies that explored men’s experiences of fertility and infertility against a backdrop of changing understandings of men’s role in society and rapidly changing medical possibilities. It draws together two separate qualitative research projects that explored men’s experiences of seeking to become fathers. One followed men as they became fathers for the first time, the other was a study of men’s experiences of infertility. The findings from both projects are analysed to provide insights into men’s experiences of fertility and infertility and their engagement with health services, set against current social and cultural ideas of masculinity. Before the advent of fertility treatment, discussions of reproduction focused almost exclusively on the woman’s body. Pregnancy and childbirth was women’s business. There was little consideration of men’s experiences and perspectives. Although male factor infertility is now a leading cause of couples seeking treatment, the focus remains the woman. As assisted reproduction treatment has developed over the last half-century, most social and psychological research has explored the woman’s perspective. The findings discussed in this paper illuminate the ways in which men try and make sense of their own successful or unsuccessful reproductive journeys. In doing so it challenges current understandings of masculinity and reproductive bodies. It also highlights how we need to perhaps rethink how men are treated in reproductive spheres and how services to men are delivered.

Keywords: fertility, gender, male infertility, masculinities, norms, service provision

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Male) infertility: what does it mean to men? New evidence from quantitative and qualitative studies

Tewes Wischmann


Received 11 January 2013; received in revised form 30 April 2013; accepted 11 June 2013. published online 21 June 2013.

Abstract

Scientific knowledge of the emotional repercussions of infertility on men remains limited and has only recently become the focus of social science research. Firstly, the current developments in research on the psychosocial impact of infertility on men through a search of the literature over the last 10 years are outlined in this paper. In the second section, issues raised in pretreatment counselling for men and their partner who consider donor insemination are described as this treatment typically raises many emotional issues. The results of more recent studies with sophisticated methodological design show that the emotional impact of infertility may be nearly balanced, suggesting that men do suffer as well and that they have to be addressed in infertility counselling too. The emotional and clinical aspects of donor insemination support the hypothesis that the emotional repercussions of infertility affect both sexes. In general, male factor infertility seems to be more stigmatized than other infertility diagnoses. Forthcoming studies have to differentiate between the psychological impact of infertility on women and men and their respective abilities to communicate easily about this distress. More studies on infertile men in non-Western societies need to be conducted in order to understand the cultural impact on infertility.

According to an American study, almost half of the women but only 15% of the men consider infertility the most upsetting experience of their lives. It would be easy to assume that infertility is predominantly a female problem. However, this assumption is likely to be based on out-dated gender stereotypes and inadequate methodology. The results of much of the formerly available research supporting women’s greater overt distress in response to infertility may well reflect differences in the ways men and women have been socialized to cope with negative affect. More recent qualitative and quantitative research indicates that the emotional impact may be nearly balanced, suggesting that men do suffer as well and that they have to be addressed in infertility counselling too. In many cultures, male infertility remains a stigmatized condition and associated with a lack of virility and masculinity. For men, this may result in secrecy surrounding diagnosis, sometimes to the point where the female partner takes the blame for the couple’s inability to conceive. Based on qualitative and of recent quantitative research, this article will outline important aspects of (male) infertility and challenge the notion of the “emotionally unaffected” male. It will also draw on typical emotional and clinical aspects of donor insemination, a family-building alternative in which many emotional issues of male infertility culminate, thus supporting the hypothesis that the emotional repercussions of infertility affect both sexes similarly.

Keywords: counselling, donor insemination, gender, male infertility, psychological stress, stigma

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Where are all the men? The marginalization of men in social scientific research on infertility

Lorraine Culley


Received 15 February 2013; received in revised form 29 April 2013; accepted 18 June 2013. published online 27 June 2013.

Abstract

There is a wealth of research exploring the psychological consequences of infertility and assisted reproduction technology, a substantial body of sociological and anthropological work on ‘reproductive disruptions’ of many kinds and a small but growing literature on patient perspectives of the quality of care in assisted reproduction. In all these fields, research studies are far more likely to be focused on the understandings and experiences of women than those of men. This paper discusses reasons for the relative exclusion of men in what has been called the ‘psycho-social’ literature on infertility, comments on research on men from psychological and social perspectives and recent work on the quality of patient care, and makes suggestions for a reframing of the research agenda on men and assisted reproduction. Further research is needed in all areas, including: perceptions of infertility and infertility treatment seeking; experiences of treatment; information and support needs; decisions to end treatment; fatherhood post assisted conception; and the motivation and experiences of sperm donors and men who seek fatherhood through surrogacy or co-parenting. This paper argues for multimethod, interdisciplinary research that includes broader populations of men which can contribute to improved clinical practice and support for users of assisted reproduction treatment.

While much has been written about the psychological and social consequences of infertility and infertility treatment, most of this has focused on the experiences of women, with relatively little research with men as users of assisted reproduction technology. This paper discusses some of the reasons why this is the case. It comments on psychological and social research which has been carried out with men and discusses some of the limitations of the methods by which this research has been conducted. An argument is made for research to pay more attention to the ways in which men as well as women experience infertility and assisted reproduction, and the paper suggests using methods from both quantitative and qualitative traditions to more fully explore a range of issues relevant to men and to improving patient care. Further research with men is needed in all areas including: perception of fertility and infertility; treatment seeking; experiences of treatment; information and support needs; decisions to end treatment; fatherhood post assisted conception; and the motivation and experiences of sperm donors and men who seek fatherhood through surrogacy or co-parenting.

Keywords: assisted reproduction technology, infertility, interdisciplinary, masculinity, men, psycho-social

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HAVE YOUR SAY



Comment (allen3 - Updated on 17/04/2013)

The same issue of BioNews (#695: 04/03/2013) which reported a genetic basis to bi-polar disorder also included a link to a Feb 14/13 Sunday Express news story, "IVF clinics reject donor eggs from bipolar women" http://www.express.co.uk/news/uk/379817/IVF-clinics-reject-donor-eggs-from-bipolar-women in which Robert Winston disputes any genetic connection: “This is not a genetic condition; there is no evidence that it is an inherited condition. In fact, all the evidence points to the fact that it probably isn’t."

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Common mental disorders share a genetic link

04 March 2013


By Anna Cauldwell
Appeared in BioNews 695


Five of the most common psychiatric disorders share genetic risk factors, an international study published in the Lancet has found. These disorders include; autism, attention deficit hyperactivity disorder (ADHD), clinical depression, bipolar disorder and schizophrenia.

'These disorders that we thought of as quite different may not have such sharp boundaries', said one of the lead researchers, Dr Jordan Smoller of Massachusetts General Hospital, USA.

In the largest genetic study of mental illness to date, researchers compared the genomes of 33,000 people with one of five common psychiatric disorders to nearly 28,000 unaffected controls. All participants were of European ancestry. Genetic variations called single nucleotide polymorphisms (SNPs) identified in four regions of the genome were significantly associated with the psychiatric disorders. Two of these regions were involved in regulating the flow of calcium in nerve cells – a process that regulates brain activity.

These findings hint at a possible shared mechanism in the development of several mental disorders. Marjorie Wallace, chief executive of mental health charity SANE, told the BBC 'the findings highlight the need to understand the genetic and biological factors of these life-changing conditions, in order that more effective treatments and therapies may be found'.

The identification of shared genetic risk factors for different psychiatric disorders may help explain previously observed connections between certain disorders. For instance, those in families with a history of bipolar disorder are suggested to have an increased risk of schizophrenia (reported in BioNews 491).

Although the SNPs identified in this study cannot predict or diagnose the mental disorders investigated, as their effects are too small, the findings have fuelled the hope that a better understanding of the genetic contributions to these conditions could impact diagnosis in the future. Currently, the diagnosis of psychiatric disorders is based entirely on symptoms.

Professor Nick Craddock from Cardiff University, who was involved in the study, told the BBC: 'It signals the opening of a potential new era for psychiatry and mental illness. This is a scientific method that helps understand what is going wrong in the brain'.

 



SOURCES & REFERENCES


5 Most Common Mental Illnesses Share the Same Genes

National Institute of Mental Health (press release) | 28 March 2013
   

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