1 Reproductive Medicine Unit, Leeds General Infirmary, Leeds LS2 9NS and CHILD, 2 The National Infertility Support Network, Charter House, 43 St Leonard's Road, Bexhill-on-Sea, East Sussex TN40 1JA, UK
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Abstract |
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Key words: emotional aspects/infertility treatment/funding/GP support/patient support groups
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Introduction |
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In the UK, infertility provision on the NHS is patchy and dependent on the area in which subjects live (College of Health, 1997). There have been calls by manyincluding Parliament, who debated this issue on 6th May 1998, resulting in the commissioning of a working party of the Royal College of Obstetricians and Gynaecologists (RCOG)to draw up guidelines as a first step to addressing the problems highlighted by this survey and others (College of Health, 1997
). In this paper, we will examine the funding issues raised by this survey, including provision of NHS treatment, the cost levied to the patient, and how much was spent on average. We will also examine the length of time spent by the respondents to this study in trying to become pregnant, and the chances of achieving a pregnancy.
It has been known for some time that infertility has a major impact on the emotional well-being of a couple. Van Balen and Trimpos-Kemper (1993) found that one-third of women and one-fifth of men in their study had serious well-being problems, and concluded that this group could be considered as needing emotional help and counselling in learning to live with their childlessness. Previous research (Sabourin et al., 1991; Wright et al., 1991
; Tarlatzis et al., 1993
; Guerra et al., 1998
) has also found increased rates of psychiatric symptoms among infertile women in comparison with their partners. While the need for increased counselling provision has long been accepted (van Balen and Trimbos-Kemper, 1993; Berg and Wilson, 1995
; Weaver et al., 1997
), there is actually a legal requirement for licensed units in the UK to provide proper counselling for couples seeking licensed treatments [HFEA Act 1990 s. 13(6); Schedule 3 para 3(1) (a)]. (This is disturbing when one considers the lack of counselling provision available, as highlighted by this report.)
As many as one-quarter of all couples could experience some delay in starting a family (Green and Vassey, 1990); thus, subfertility must affect a significant proportion of the younger clients of any general practitioner (GP). Studies which have examined interest in infertility by GPs (Ittner et al., 1997) showed that the majority of GPs did not routinely ask childless patients about their desire to have children, although one-half of the men and one-quarter of the infertile women would prefer the doctor to raise the subject. In this paper, we examine the couples' understanding of their infertility and which of the professionals were considered to have been informative and supportive as treatment commenced.
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Materials and methods |
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Results |
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Of those who had to fund treatment themselves, 75.9% were completely self-funded, 4.1% took out a bank loan, 5.4% a family loan, and 8% paid for it partly by themselves and partly through the family. A very small percentage of respondents had combinations of bank loans, family loans, and GP funding for drugs combined with funding of the therapy by themselves, and through family gifts, private insurance, etc.
Pregnancy outcome
Of the 980 respondents, 404 (41%) conceived, 13 (1%) miscarried, 8 (1%) had an ectopic pregnancy, and 547 (56%) did not conceive at all. Two babies were lost because they were either stillborn or premature, and 29 (3%) respondents did not state whether they had conceived. Of those who became pregnant, 37% took between 3 and 5 years to conceive, while 39% took between 6 and 10 years.
Emotional difficulties
Approximately one-third of patients said that infertility had strained their relationship, and 28% found that their relationship improved as a result of their shared experiences with their partner (Table V).
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Support from professionals
Of the 980 respondents, 682 said that they would consider counselling, while 290 said that they would not; 299 had already received counselling. In addition, 71% said that they would request counselling for the negative feelings that they experienced if it were offered free, but only 12% had been provided with free counselling on the NHS.
Of the 980 respondents, 343 (35%) said that their GP had provided sufficient information about infertility and its treatment, while 616 (63%) said that their GP had not done so, and 21 (2%) did not state either way. It appeared that GPs in Scotland, the East Midlands and Northern Ireland performed the least well in providing information to their patients. The other regions were similar in terms of GP performance. In total, 827 patients (84%) said that they had received positive help from their infertility specialist, while 159 (16%) felt that their infertility specialist had not been particularly helpful. There did not appear to be any specific regional differences in the performance of the fertility specialists, and the breakdown was not sufficient to adequately analyse private versus NHS specialists. Some 664 (68%) of patients felt that they fully understood the medical nature of their own and/or partner's infertility, while 169 (17%) did not, and 143 (15%) were unsure (four did not state either way). There were some regional differences, with Wales and the West Midlands having a greater percentage who understood their treatment (79% and 74% respectively) compared with some regions where fewer than 55% understood (Scotland, Yorks/Humberside) (Table VI).
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Discussion |
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A response rate of 49% was achieved by this survey, and this is perhaps lower than one would expect from a group of patients who are highly motivated (particularly those who have joined a support organization). The fact that the responses were predominantly from women is as one might expect when one form was sent to each couple who are members.
Interestingly, 56% of those who responded to this survey had not conceived at the time of responding, which is in keeping with the notion that once a couple have conceived there is a desire to forget about the stresses and problems experienced before achieving the pregnancy.
As expected, the large majority (97%) of (female) respondents were under the age of 45 years, with just over half (56%) having tried to conceive for 5 years or less. It is noteworthy that 10% of couples had been trying for more than 10 years, and this may represent a hard core who have experienced greater problems than average.
Once again, the study highlighted a great discrepancy in the provision of NHS infertility treatment. Studies commissioned by NIAC have shown that the greatest source of funding is to be found in Scotland and the North West, with Greater London and the Home Counties faring worst (College of Health, 1997). The present study confirmed these findings, with 75.9% of couples completely self-funding their treatment. This may be due to the fact that most respondents live in the South; alternatively, it may be due to a biased response from the patients who responded to the survey.
A significant number of respondents had only private treatment (428, as opposed to 178 using NHS only, while 314 used a mixture). It may be that some couples had chosen to have private treatment, but it must be considered that some of the respondents may have been forced to have private treatment out of a lack of choice in their area.
The survey was carried out in early 1997. The average amount spent per patient was £3466, and this was before the increase in drugs costs that arose with the introduction of recombinant gonadotrophins by the duopoly of Organon and Serono. It should be considered that this figure may well be higher today, since more GPs are refusing to prescribe drugs; anecdotal evidence would suggest that although this is not leading to fewer referrals, it is leading to fewer couples having a second or third treatment cycle and exposing themselves to the risk of significant debt. The estimate of cost does not, of course, consider the true cost of infertility treatment, including time off work for clinic attendances, surgery, prescription charges, child care for an existing child, and the myriad of other trivial expenses which significantly add to the cost of treatment.
One could postulate that the patients who subscribe to CHILD are likely to be better motivated and better informed than average because they have made an effort to join an organization which provides support and supplies literature, and therefore these patients would be expected to have a better understanding of their fertility problems. On the other hand, patients who conceive more quickly may not subscribe to CHILD and therefore, one could suggest that these respondents are more likely to have had negative experiences and outcomes from treatment. However, although in general the results of the effect of infertility on relationship issues are as one would expect, there are some surprises.
Embarrassment was reported by only 22% of respondents. Previous studies have indicated that the level of distress and embarrassment that one could expect is 5060% (Eimers et al., 1997), particularly with investigations such as the post-coital test (PCT) (Drake and Grunert, 1979
) and semen analysis. Investigations are potentially very distressing with respect to both the questions asked and the tests performed. It could be argued that couples who attend infertility support groups have overcome many of their reservations about discussing their problems, and have resolved these issues themselves. On the other hand, it may be that clinicians are examining increasing evidence (Taylor and Collins, 1992
) which suggests that the role of the PCT is limited and therefore not being performed. Similarly, as most of the responses are from women, they may have underestimated the distress and embarrassment that their partner may have felt. Alternatively, this may be a positive indication of the way in which they have been treated by their infertility specialists.
Most worrying of all is the fact that one in five respondents had experienced suicidal feelings at some point through the whole process. This degree of emotional distress noted among the present respondents has been confirmed by other studies (Sabourin et al., 1991; Wright et al., 1991
; Tarlatzis et al., 1993
; van Balen and Trimbos-Kemper, 1993; Guerra et al., 1998
). This is disturbing when one considers the lack of counselling provision available, as highlighted by this report.
The findings relating to the emotional impact of infertility are particularly significant, and should not be affected by the type of patient group responding to the survey, although it may be affected by the high number of female respondents. Similarly, the results could be affected by the length of time the couple had been trying to conceive and whether or not they have previously failed treatment. Nevertheless, it is clear that couples suffer extreme emotional feelings, and this clearly demonstrates the need for counselling to be more readily available.
The survey shows that 71% of couples felt that they would benefit from counselling which should be available on the NHS, and this finding has been confirmed by several studies (van Balen and Trimbos-Kemper, 1993; Berg and Wilson, 1995; Weaver et al., 1997
). However, only 12% of respondents had actually received free counselling as part of their treatment, while 30% had undergone counselling having realized their need and self-funded their therapy. The inadequacy of counselling provision is important, particularly with the legal requirement for licensed units to provide proper counselling for couples seeking licensed treatments [HFEA Act 1990 s. 13(6); Schedule 3 para 3(1) (a)]. The fact that only 12% received free treatment, but 71% felt that they would have benefited from it, clearly demonstrates a need that is not being provided by the NHS. It might be suggested that the Human Fertilisation and Embryology Authority (HFEA) should be more proscriptive and insist that clinics (private or otherwise) should provide free counselling for all.
It is difficult to be precise, but it is usually estimated that one-sixth of couples remain childless involuntarily (Templeton et al., 1990); however, there are some data available to suggest that this figure is an underestimate and that perhaps as many as one-quarter of all couples could experience some delay in starting a family (Green and Vessey, 1990
). Thus, subfertility must affect a significant proportion of the younger clients of any GP. While some GPs are very supportive, there are others who feel that infertility is not high on their list of priorities, and this in part may be borne out by the present study, as 53% of respondents felt that their GPs did not provide them with sufficient information. This finding is consistent with a study which examined interest in infertility by GPs (Ittner et al., 1997
) and showed that only half the doctors surveyed felt their role to be as an important source of information. This study would indicate that a corresponding number of patients experienced that support.
Although the lack of support given by GPs is disappointing, the lack of information provided by infertility specialists in some clinics is of concern. More worrying, however, is that 14% of those respondents who did not understand the nature of their infertility had been trying to conceive for more than 8 years (though in some cases this may be due to a diagnosis of unexplained infertility).
In conclusion, this study aimed to investigate the financial and emotional impact of infertility on couples trying for a child, and again highlighted the great discrepancy in the provision of NHS infertility treatment across the country, with those in the North faring better.
The study also showed that although one might have expected this group of patients to have had negative experiences, these were on the whole less than one might have anticipated. However, there were a worrying number of respondents who experienced suicidal feelings.
The survey demonstrated that a significant number of patients felt that they would benefit from counselling available on the NHS, although only one-eighth had received this. Similarly, the couples surveyed were very aware that they needed help, but unfortunately had not received it from their GP. This, combined with a lack of information given by their infertility specialist, is of great concern.
The survey generated considerable media interest during the NIAC focus week in 1997, and helped to make both the general public, journalists and health professionals aware of both NIAC and the effects of infertility, which are more profound than is usually realized.
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Acknowledgments |
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Notes |
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References |
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Submitted on April 11, 1998; accepted on January 12, 1999.