1 Melbourne IVF, 320 Victoria Pde, East Melbourne, 3002, 2 Key Center for Women's Health in Society, Faculty of Medicine, Dentistry & Health Sciences, University of Melbourne, Carlton, 3053 and 3 University of Melbourne, Department of Obstetric and Gynecology, Royal Women's Hospital, Grattan Street, Carlton, 3053, Australia
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Abstract |
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Key words: IVF experience/long-term well-being/patient satisfaction/psychosocial impact/stress
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Introduction |
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Follow-up studies of IVF couples have demonstrated various degrees of mainly short-term emotional consequences of treatment such as depression, increased anxiety and negative effects on self-esteem and marital relationship when treatment was unsuccessful (Leiblum et al., 1987a,b; Freeman et al., 1987
; Newton et al., 1990
; Hynes et al., 1992
; Litt et al., 1992
; Merari et al., 1992
; Thierling et al., 1993
; Visser et al., 1994
; Boivin and Tafekman, 1995
; Slade et al., 1997
).
The aims of the present research were to increase the understanding of how women feel about the experience of IVF and how they view their general health, marital relationship and life satisfaction 2 to 3 years after ceasing treatment. Another important aim was to explore how the outcome of IVF treatment, i.e. whether a live birth was achieved or not, affected the recall of this experience. The reason for choosing to study women who had had their last treatment some time ago was to allow for the IVF experience to be viewed in the context of the infertility experience as a whole. It was postulated that the outcome of IVF treatment would affect how women view the IVF experience with the expectation that those who did not have a baby would feel worse about the experience and would suffer more adverse emotional consequences.
The study was carried out at a large IVF centre in Melbourne, Australia. In 1996 there were 27 units providing IVF in Australia and 1.1% of all births for 1995 were a result of IVF and associated procedures (Hurst et al., 1997). Assisted reproductive technology treatment is to a large extent funded by the government (~6070% of the cost) and at the time of this study every woman was eligible for six subsidized stimulated treatment cycles.
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Materials and methods |
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Questionnaire
A 161 item questionnaire consisting of several sections was devised. The first section, `Information about you and your family', explored the socio-demographic circumstances of the subjects. This was followed by `The infertility investigation' which dealt with issues and events that pre-dated the IVF treatment and `Deciding to try IVF' which focused on how women made the decision to try IVF and their level of satisfaction with the information given by the clinic prior to commencing treatment. In the next section, `Counselling and support', the questions canvassed to what extent support from the clinic and other sources was available and helpful while on the programme. `On the programme' covered all aspects involved in having the actual treatment and the final section, `After treatment', explored the reasons for stopping treatment and how the experience of infertility and IVF treatment had affected long-term emotional well-being.
Three standardized self-report measures were also included, namely: the Satisfaction With Life Scale (SWLS) (Diener et al., 1985), the Golombok Rust Inventory of Marital State (GRIMS) Questionnaire (Rust et al., 1988
) and the General Health Questionnaire (GHQ-12) (Goldberg, 1992
).
The SWLS has been developed as a measure of life satisfaction and is a five-item, self-report scale where subjects rate their level of agreement with each item (e.g. `In most ways my life is close to ideal' and `So far I have got the things I want in life') on a seven-point Likert scale. A score is obtained by adding the rating for all items and can range from 5 (minimal life satisfaction) to 35 (best possible life satisfaction). The results of studies evaluating the measure indicate that the SWLS has good reliability and internal consistency. The 2 month test-retest reliability was 0.82 and the coefficient alpha was 0.87. Inter-item correlations are all consistently positive and factor analyses have revealed a unitary factor accounting for ~70% of the variance (Weinman et al., 1995).
The GRIMS is a 28 item self-report questionnaire developed to assess the overall quality of the relationship between a man and a woman who are married or live together. Evaluations of the test have shown that it is a reliable and valid instrument, providing a good estimate of problem severity in a relationship. Split-half and alpha coefficients indicated a high degree of consistency within the GRIMS items (coefficients ranged from 0.81 to 0.94) and content and face validity were regarded as high when validity of the questionnaire was assessed by means of diagnostic and empirical methods (Milne, 1992).
The GHQ-12 is a shortened but equally valid and reliable version of the well-validated GHQ-60 which was designed to detect non-psychotic psychiatric disorder. Each of the 12 items asks if the subject has experienced a particular symptom or item of behaviour recently using a four-point scale. The scoring method used in this study gives a range between 0 and 12 and is appropriate for detecting psychiatric cases. Based on five validation studies the threshold for psychiatric disorder is 2/3 (a score of 8). The internal consistency of GHQ-12 using Cronbach's alpha based on a number of studies ranged from 0.82 to 0.90. The split-half reliability was 0.83 and test-retest reliability 0.73. In the original validation of GHQ-12, sensitivity was 93.5% and specificity in detecting cases was 78.5% (Johnston et al., 1995
).
Procedure
In July 1997, 229 women were sent the questionnaire, an explanatory letter and a consent form where they were asked to indicate their intentions, and a stamped addressed return envelope. The return form gave the subjects three options: to sign the consent form and return the completed questionnaire, to return the forms declining participation or to indicate the intention to return for further treatment. The latter were asked not to participate as the study was designed for women who had stopped IVF. Eighteen women indicated they would come back for more treatment and they were therefore excluded from all analyses reducing the study population to 211.
Statistical methods
The Statistical Package for Social Sciences (SPSS; Melbourne University, Melbourne, Australia) was used to analyse the data. The 2-test was used to compare responses of nominal and ordinal data between those who had a birth as a result of the treatment and those who were unsuccessful. t-Test or analysis of variance was used with interval data, and, if significant, the unequal variance t-test for equality was used.
For responses on Likert scale calculations were made using each chosen response and also aggregating responses (for example pooling `Strongly disagree' with `Disagree' and `Agree' with `Strongly agree'). The latter were analysed by 2x2 2-test. Aggregated responses are reported here, and where there were statistically significant differences between those who had a baby as a result of treatment and those who did not, this is indicated in the tables.
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Results |
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Treatment information
Treatment information available from medical records is presented in Table I. No statistically significant differences were found between responders, non-responders and those declining participation.
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`Information about you and your family'
This section included demographic information and the findings are presented in Table II.
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`Deciding to try IVF'
The first part of this section assessed how women felt about the decision to try IVF. They were asked to indicate on a four-point Likert scale, `Strongly disagree', `Disagree', `Agree' and `Strongly agree', the degree to which they felt 17 statements applied to them; responses are shown in Table III.
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`Counselling and support'
On a four-point Likert scale, `Strongly disagree', `Disagree', `Agree' and `Strongly agree', women were asked to state the extent of their agreement with 11 statements about the counselling services and other support provided by the clinic. Counselling is mandatory in the state of Victoria before having IVF treatment, but at the clinic counselling is also available free of charge at any stage of treatment. Responses are recorded in Table V and in most cases they refer to the compulsory counselling as only a minority (15%) stated that they had had any other contact with the counsellor. The vast majority of women in both groups agreed that ongoing counselling should be part of having IVF treatment and that couples should be counselled about the option of stopping treatment. The women in the `No baby' group were less likely to agree with some of the positive statements about counselling and support, and more likely to feel that they would have liked to attend counselling together with other couples.
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The first part listed 15 reasons for stopping treatment and the women were asked to indicate those they felt applied to them. The reasons given for ceasing treatment varied considerably between the `Baby' and the `No baby' groups as would be expected. The four most common reasons quoted by the `Baby' group were: `Being pregnant' (94%), `I had had enough' (20%), `Emotional cost' (14%) and `Concerns about health effects from IVF' (10%). For the `No baby' group the most common reasons were: `I had had enough' (66%), `Emotional cost' (64%), `Could not cope with more treatment' (42%) and `Physical cost' (39%).
Finally, 17 general statements about infertility and the IVF experience were listed. Women could chose to `Strongly disagree', `Disagree', `Agree' or `Strongly agree' with the statements. The responses are shown in Table IX. On most points the two groups coincided in their views and most agreed that they had had IVF to avoid future regrets. However, the `No baby' group was less likely to agree with positive statements and more likely to agree with negative statements about the experience of infertility and IVF.
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Eight women had separated or divorced since IVF, leaving 108 who were eligible to fill out the GRIMS. Of these, four did not fill it out and 11 filled it out incompletely, leaving 93 cases that could be used for analysis (86% of eligible). The mean transformed score for the whole group was 3.6 (range 18), with the interpretation of 3 being `Good' and of 4 `Above average'. A comparison of the scores for `Baby' versus `No baby' groups revealed no significant differences between the two.
The GHQ-12 was filled out by 114 women (99%). The mean score was 1.8 with 107 (94%) having a score of <8 which is the threshold score for psychiatric disorder. Of the seven that remained, four women scored 8 and the others scored 9, 10 and 11. A comparison between the `Baby' group and the `No baby' group revealed no significant differences.
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Discussion |
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It is well known that the main problem with mailed questionnaires as a research tool is low response rates. Adler et al. (1991) argue that particular problems are associated with questionnaires in IVF participants since attrition rates tend to be high for women who have not had a baby. Studies about the experience of IVF may therefore underestimate the negative feelings of the women who are unsuccessful as many of them would elect not to respond. With a substantial number of completed questionnaires (116), a response rate of 55% and the number of responders who had been successful and unsuccessful being proportional and not statistically significantly different from the whole study population, it would appear that the findings in this study are representative.
The hypothesis that women's recall of the experience of IVF treatment is dependent on the outcome, with those who are unsuccessful feeling worse about the experience, was partly supported by this study. The findings suggest that there were some aspects of having IVF that were particularly difficult for women and this was often more pronounced in the `No baby' group. Negative feelings and dissatisfaction with treatment may be expected when it is unsuccessful and some of the findings of the current study confirm this. However, it was noticeable that on many items the `Baby' and the `No baby' groups coincided in their views.
A very strong feeling that everything had to be tried to have a child was clearly a driving force behind the decision to try IVF. Tymstra (1989) also found that women reported that the compelling nature of IVF was a motivating factor for trying (Tymstra, 1989). The women felt well-informed about what was involved before starting but a large proportion expressed that it was difficult and anxiety-provoking to make the decision to try. This is important for clinic staff to be aware of, as women may be feeling particularly vulnerable at the time of starting treatment.
Although most women agreed that their family and friends and indeed society as a whole are accepting of IVF, many found infertility difficult to talk about and did not reveal that they were having IVF treatment. Secrecy and having to come up with excuses for absenteeism at work adds to the stress of having treatment and contributes to a sense of isolation. As part of counselling it may help some women to discuss these issues.
The provision of clear and unambiguous information about all aspects of treatment is essential for couples to be able to make informed decisions about treatment. The fact that the `No baby' group was less satisfied with most of the information provided probably reflects the ameliorating effect of success on recall of the quality of the information. The ability to retain information varies greatly and it has been shown that as much as 50% of information is forgotten as soon as 5 min after a consultation and that information processing can be inhibited by anxiety and how the information is presented (Reading and Kevin, 1989b). Therefore, information needs to be given repeatedly through the course of treatment and not only at the start.
Many women had concerns about the possible health risks of having IVF. As the long-term health effects of fertility drugs and assisted conception have yet to be fully determined, women need to be provided with all the information that is available in a format which enables them to make an informed decision about using fertility drugs.
It is important to ascertain what expectations couples have of the treatment being successful before starting. This would provide an opportunity to engage further with those who grossly overestimate their chance (25% in this study). Several other studies have found that the majority of women overestimate their chance of having a live birth as a result of IVF (Holmes and Tymstra, 1987; Leiblum et al., 1987b
; Johnston et al., 1987
; Reading 1989
; Koch 1990
; Visser et al., 1994
).
Particularly stressful times, when counselling may have an important role to play, were identified by the women in this study. They included waiting for news about fertilization, waiting to find out if the treatment had worked, after one or more unsuccessful treatment cycles and when a pregnancy was lost. However, it is important to realize that some may not want or need counselling and this should be respected. Only a small proportion of women in this study availed themselves of the counselling services beyond the initial mandatory counselling session. Similarly, it was reported from a survey of IVF programmes in the UK that in the majority of clinics <25% of couples took up the offer of counselling (Hernon et al., 1995) and Laffont et al. (1994b) found that only 26% of women felt that meeting with a psychologist would `improve knowledge and passage through an IVF cycle'. Boivin (1997) makes the point that although most studies find that patients express interest in counselling, the actual take-up rate of the offer to have counselling is usually only 1821%. She suggests that while a minority of highly distressed patients may benefit from counselling, most infertile couples cope with the distress they experience and may find more informal sources of help, such as written information, more useful. However, studies have shown that even if couples do not seek counselling they are reassured to know that it is available (Freeman et al., 1985
; Seibel and Levin, 1987
; Mazure et al., 1992
; Laffont and Edelmann, 1994b
). In another study Boivin et al., (1999) found that the most distressed patients failed to initiate contact with counsellors and this implies that clinics need to be proactive in identifying those who need their support. In comments made by the women who did use the counselling services in the present study, it is clear that the availability of the service was seen as vitally important at times of distress.
Most women agreed that ongoing counselling should be part of having IVF and that the clinic should contact couples between treatments. They also believed that couples should be counselled about the option of stopping treatment. These findings support the view expressed by Guerra et al. (1998) that a reassessment of a couple's feelings and degree of psychological distress should be made after each IVF cycle (Guerra et al., 1998).
This and other studies have found that unsuccessful IVF does not appear to have long-term detrimental effects on the marital relationship (Freeman et al., 1987; Leiblum et al., 1987b
). In fact 37% of women in this study reported that IVF had had a positive impact on their marital relationship and feelings of improved closeness between partners having IVF have been reported by some (Baram et al., 1988
; Litt et al., 1992
; Laffont et al., 1994a). Van Balen and Trimbos-Kemper (1993) found that although couples reported that infertility had a negative effect on their sex life, the number who did not enjoy the sexual contact with their partner was no different to what is found among other couples.
Many women in this study, as in a study by Laffont and Edelmann (1994a), felt that having IVF interfered with their work commitments and negatively influenced their career. This would inevitably add to the stress of having IVF, particularly for women who have chosen not to disclose that they are having treatment.
Unsuccessful IVF treatment has been found to leave women feeling sad, anxious and depressed (Holmes and Tymstra, 1987; Baram et al., 1988
; Newman and Zouves, 1991
). It is important that couples are made aware that this is a normal response but that over time emotional well-being becomes similar to that of women who are successful. However, it might take 1 or 2 years to recover, as suggested by findings in one study (Slade et al., 1997
) where 6 months after the last IVF cycle, those who had been unsuccessful showed significantly greater emotional distress and had poorer marital adjustment than the group who were pregnant. In a follow-up study of women who had their last treatment between 1982 and 1993, Leiblum et al. (1998) found that most women did not report negative effects on marital or sexual relationships after infertility treatment but that those who had been successful had greater overall life satisfaction than the unsuccessful. Similarly, the present study indicates that a few years after ending IVF treatment emotional well-being and marital satisfaction are not affected by lack of success whereas life satisfaction is lower for the women who were unsuccessful.
Most women in both groups had IVF to avoid future regrets and in spite of the difficulties involved they were glad that they had tried and did not regret having had treatment.
In conclusion, the findings from this research increase our understanding of what women who undergo IVF see as the main issues in relation to treatment. This knowledge gives providers of IVF valuable insight and may help in optimizing the information, communication, support and counselling aspects of IVF programmes. Having had a child or children as a result of treatment appears to positively influence the experience, as may have been expected. However, women who were unsuccessful seem to have dealt with the disappointment, and although more critical about the experience of treatment, their marital relationship and general health were not different from those who were successful.
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Notes |
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References |
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Baram, D., Tourtelot, E., Muelcher, E. et al. (1988) Psychosocial adjustment following unsuccessful in vitro fertilization. J. Psychosom. Obstet. Gynecol., 9, 181190.[ISI]
Boivin, J. (1997) Is there too much emphasis on psychosocial counselling for infertile patients? J. Assist. Reprod. Genet., 14, 184186.[ISI][Medline]
Boivin, J. and Tafekman, J.E. (1995) Stress level across stages of in vitro fertilization in subsequently pregnant and non pregnant women. Fertil. Steril., 64, 802810.[ISI][Medline]
Boivin, J. and Tafekman, J.E. (1996) Impact of the in-vitro fertilization process on emotional, physical and relational variables. Hum. Reprod., 11, 903907.[Abstract]
Boivin, J., Scanlan, L.C. and Walker, S.M. (1999) Why are infertile patients not using psychosocial counselling? Hum. Reprod., 14, 13841391.
Callan, V.J and Hennessey, J.F. (1988) Emotional aspects and support in in-vitro fertilization and embryo transfer programs. J. In Vitro Fertil. Embryo Transfer, 5, 290295.[ISI][Medline]
Connolly, K.L., Edelmann, R.J., Bartlett, H. et al. (1993) An evaluation of counselling for couples undergoing treatment for in vitro fertilization. Hum. Reprod., 8, 13321338.[Abstract]
Diener, E., Emmons, R.A., Larson R.J. et al. (1985) The satisfaction with life scale. J. Personality Assessm., 49, 7176.
Freeman, E.W., Boxer, A.S., Rickels, K. et al. (1985) Psychological evaluation and support in a program of in-vitro fertilization and embryo transfer. Fertil. Steril., 43, 4853.[ISI][Medline]
Freeman, E.W., Rickels, K., Tausig, J. et al. (1987) Emotional and psychological factors in follow-up of women after IVF-ET treatment. Acta Obstet. Gynecol. Scand., 66, 517521.[ISI][Medline]
Goldberg, D. (1992) General Health Questionnaire (GHQ-12). NFER-Nelson, Windsor, UK.
Guerra, D., Llobera, A., Veiga, A. et al. (1998) Psychiatric morbidity in couples attending a fertility service. Hum. Reprod., 13, 17331736.[Abstract]
Hernon, M., Harris, C.P., Elstein, M. et al. (1995) Review of the organized support network for infertility patients in licensed units in the UK. Hum. Reprod., 10, 960964.[Abstract]
Holmes, H.B. and Tymstra, T. (1987) In vitro fertilization in the Netherlands: experiences and opinions of Dutch women. J. In Vitro Fertil. Embryo Transfer, 4, 116123.[ISI][Medline]
Hurst, T., Shafir, E. and Lancaster, P. (1997) Assisted conception, Australia and New Zealand 1996. AIHW National Perinatal Statistics Unit (Assisted Conception Series: no. 3), Sydney.
Hynes, G.J., Callan, V.J., Terry, D.J. et al. (1992) The psychological well-being of infertile women after a failed IVF attempt: The effects of coping. Br. J. Med. Psychol., 65, 269278.[ISI][Medline]
Johnston, M., Shaw, R. and Bird, D. (1987) `Test tube baby' procedures: stress and judgements under uncertainty. Psychol. Hlth, 1, 2538.
Johnston, M., Wright, S. and Weinman, J. (1995) Stress, Emotions and Life Events, Measures in Health Psychology, A User's Portfolio. NFER-Nelson, Windsor, UK.
Kentenich, H. (1989) Psychological guidance of IVF patients. Hum. Reprod., 4 (Suppl.), 1722.[Abstract]
Koch, L. (1990) IVFAn irrational choice? Iss. Reprod. Genet. Engng, 3, 235242.
Laffont, I. and Edelmann, R.J. (1994a) Psychological aspects of in-vitro fertilization: a gender comparison. J. Psychosom. Obstet. Gynecol., 15, 8592.[ISI][Medline]
Laffont, I. and Edelmann, R.J. (1994b) Perceived support and counselling needs in relation to in vitro fertilization. J. Psychosom. Obstet. Gynecol., 15, 183188.[ISI][Medline]
Leiblum, S.R., Kemmann, E., Colburn, D. et al. (1987a) Unsuccessful in vitro fertilization: a follow-up study. J. In Vitro Fertil. Embryo Transfer, 4, 4650.[ISI][Medline]
Leiblum, S.R., Kemmann, E. and Lane, M.K. (1987b) The psychological concomitants of in vitro fertilization. J. Psychosom. Obstet. Gynecol., 6, 165178.[ISI]
Leiblum, S.R., Aviv, A. and Hamer, R. (1998) Life after infertility treatment: a long-term investigation of marital and sexual functioning. Hum. Reprod., 13, 35693574.[Abstract]
Litt, D.M., Tennen, H., Affleck, G. et al. (1992) Coping and cognitive factors in adaptation to in vitro fertilization failure. J. Behav. Med., 15, 171187.[ISI][Medline]
Mahlstedt, P.P., McDuff, S. and Bernstein, J. (1987) Emotional factors in the in vitro fertilization and embryo transfer process. J. In Vitro Fertil. Embryo Transfer, 4, 232236.[ISI][Medline]
Mazure, C.M., Tafekman, J.E., Milki, A.A. et al. (1992) Assisted reproductive technologies: II: Psychologic implications for women and their partners. J. Women's Health, 1, 275281.
Merari, D., Feldberg, D., Elizur, A. et al. (1992) Psychological and hormonal changes in the course of in-vitro fertilization. J. Assist. Reprod. Genet., 9, 161168.[ISI][Medline]
Milne, D. (ed.) (1992) Interpersonal Difficulties, Assessment, A Mental Health Portfolio. NFER-Nelson, Windsor, UK.
Newman, N.E. and Zouves, C.G. (1991) Emotional experiences of in vitro fertilization participants. J. In Vitro Fertil. Embryo Transfer, 8, 322328.[ISI][Medline]
Newton, C.R., Hearn, M.T. and Yuzpe, A.A. (1990) Psychological assessment and follow-up after in vitro fertilization: assessing the impact of failure. Fertil. Steril., 54, 879886.[ISI][Medline]
Reading, A.E. (1989) Decision making and in-vitro fertilization: the influence of emotional state. J. Psychosom. Obstet. Gynecol., 10, 107112.[ISI]
Reading, A. and Kerin, J. (1989) Psychologic aspects of providing infertility services. J. Reprod. Med., 34, 861870.[ISI][Medline]
Rust, J., Bennun, I., Crowe, M. et al. (1988) The Golombok Rust Inventory of Marital State. NFER-Nelson, Windsor, UK.
Seibel, M.E. and Levin, S. (1987) A new era in reproductive technologies: the emotional stages of in vitro fertilization. J. In Vitro Fertil. Embryo Transfer, 4, 135139.[ISI][Medline]
Slade, P., Emery, J. and Lieberman, B.A. (1997) A prospective, longitudinal study of emotions and relationships in in-vitro fertilization treatment. Hum. Reprod., 12, 183190.[Abstract]
Thierling, P., Beaurepaires, J., Jones, M. et al. (1993) Mood state as a predictor of treatment outcome after in vitro fertilization/embryo transfer technology (IVF/ET). J. Psychosom. Res., 37, 481491.[ISI][Medline]
Tymstra, T. (1989) The imperative character of medical technology and the meaning of `anticipated decision regret'. Int. J. Technol. Assessm. Hlth Care, 5, 207213.
van Balen, F. and Trimbos-Kemper, C.M. (1993) Long-term infertile couples: a study of their well-being. J. Psychosom. Obstet. Gynecol., 14, 5360.[ISI][Medline]
Visser, A.Ph., Haan, G., Zalmstra, H. et al. (1994) Psychosocial aspects of in vitro fertilization. J. Psychosom. Obstet. Gynecol., 15, 3543.[ISI][Medline]
Weinman, J., Wright, S. and Johnston, M. (1995) Health Status and Health Related Quality of Life, Measures in Health Psychology. A User's Portfolio. NFER-Nelson, Windsor, UK.
Woods, N.F., Olshansky, E. and Draye, M.A. (1991) Infertility: Women's experience. Health Care Women Int., 12, 179190.[Medline]
Submitted on September 12, 2000; accepted on November 10, 2000.