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Psychological effects of having amniocentesis: Are these due to the procedure, the risk or the behaviour?
Jouml
o/P.~~chosomric
Printed
in Great
Research.
Vol.
36, No. 4. pp. 395402.
CO22-39!W92
1992.
$S.oO+ .oO
% 1992 Pergaman
Elrltam
Press plc
PSYCHOLOGICAL EFFECTS OF HAVING AMNIOCENTESIS: ARE THESE DUE TO THE PROCEDURE, THE RISK OR THE BEHAVIOUR? THERESA M. MARTEAU,* MARIE (Received
JANE KIDD,*
JOHNSTON,* 12 September
RACHEL
JOAN SLACKS 1990; accepted
COOK,*
SUSAN
MICHIE,*
and R. W. SHAW$
in revised form
5 June
1991)
Abstract-The purpose of the study was to examine the impact of amniocentesis on women at risk for having a baby with Down’s syndrome because of raised maternal age. Fifty-four of the study participants had amniocentesis and nine did not. At the time of the procedure, those having amniocentesis were significantly more anxious, less certain about the baby’s health, and held more negative attitudes towards the baby than women who did not undergo amniocentesis. For women undergoing amniocentesis there was a positive association between perceived risk of having an abnormal baby and anxiety. After the baby’s birth, women who had undergone amniocentesis held less positive attitudes to the baby and were significantly more worried about the baby’s health. These results suggest that the anxiety surrounding amniocentesis is related both to the procedure and to the perceived likelihood of an abnormal result. The differences between the groups after the birth seem more likely to reflect pre-existing attitudinal differences between the two groups, than the effects of amniocentesis.
INTRODUCTION UNDERGOING any medical procedure is usually associated with stress, which may be related to the procedure itself as well as the outcome [ 1 ] . There have been numerous reports describing the distress associated with undergoing amniocentesis and awaiting the results [2-41. There has, however, been some difficulty in identifying whether stress is associated with the procedure or the increased risk of foetal abnormality in these pregnancies. Several studies have attempted to determine the extent to which anxiety levels of women undergoing amniocentesis are due to the procedure by comparing their anxiety levels with those of women not undergoing amniocentesis. This observational method provides ambiguous results. In addition, the comparison groups have not been matched on one important variable: risk of having a child with an abnormality. Two studies, one by Fava and colleagues [ 51 and one by Phipps and Zinn [ 61 compared a group of women at risk of having an affected child, with a group of women not undergoing amniocentesis who were younger and hence at lower risk for having a child with Down’s syndrome. The differences in distress reported between the groups could have been a result of differing age, undergoing the procedure, their differing risk statuses, or a combination of these. Marteau and colleagues [7] controlled for age and, therefore, risk of having a *Health Psychology Unit, Royal Free Hospital School of Medicine. tDepartment of Clinical Genetics, Royal Free Hospital School of Medicine. iAcademic Department of Obstetrics and Gynaecology, Royal Free Hospital School of Medicine. Address for correspondence: Dr T. M. Marteau, Health Psychology Unit, Royal Free Hospital School of Medicine. London NW3 2QG, U.K. 395
396
T. M. MARTEAU et al.
child with Down’s syndrome in a prospective study. The main difference between those who underwent and those who declined amniocentesis was found in the third trimester: women who had undergone amniocentesis were significantly less anxious than women who had not. Two hypotheses were put forward for this finding: first, undergoing amniocentesis is reassuring in the longer term; second, women with an avoidant coping strategy do not undergo prenatal tests and are more anxious in anticipation of labour. A third hypothesis is that the raised levels of anxiety may be caused by the way doctors talk to women, for example bringing to their attention later in pregnancy that they have not undergone amniocentesis in the pregnancy. The total sample size in this study was small (N = 18). It is important to investigate this question further because of the suggested link between anxiety in pregnancy and perinatal complications, attitudes towards the foetus, and the early relationship between mother and child [ 8- 111. Given that whether an individual undergoes this procedure is not randomly determined, any observed differences between those undergoing the procedure and those not cannot be ascribed purely to the procedure. Those choosing to undergo amniocentesis differ from those who do not in their attitudes to termination, perceived risk of having an abnormal baby, and their fear of losing their current pregnancies [ 12-151. It is therefore important in interpreting the results of any study assessing the impact of a procedure to consider that any differences between those undergoing and those not undergoing the procedure may reflect differences which existed prior to the intervention and which may have influenced the decision of whether to undergo the procedure. As new technologies become incorporated into everyday use, so it is possible that their impact will alter. For example, as the numbers of women undergoing amniocentesis increases [ 16, 171 so a woman undergoing the procedure is more likely to know others who have undergone it. Her attitudes are therefore likely to be influenced more strongly by a process of social diffusion, than they would if it were a rare procedure. The possible effects of changes in use can be explored by comparing the impact upon women of undergoing amniocentesis some years apart in time. The current study has three aims: (a) To repeat our earlier prospective study, using a larger sample, in order to compare the psychological responses of women undergoing amniocentesis with those not undergoing the procedure; (b) To examine whether differences between those having and those noi having amniocentesis are associated with the procedure or factors predating the choice of amniocentesis; (c) To extend the study period to six weeks post-partum. METHOD Subjects All women up to 16 weeks pregnant aged 3X yr or over at the expected date of confinement, booking in for antenatal care at the Royal Free Hospital between September 1987 and August 198X were eligible for inclusion in the study. There were 103 such women during the study period. Of these, nine were excluded because they miscarried before the time when amniocentesis would have been carried out; four were not sufficiently fluent in English to complete the questionnaires; nine refused to participate; and 1X failed to complete a minimum of five questionnaires, with at least one completed in each trimester. Hence there were 63 full study participants. There were no differences between those who had
Psychological
effects
of amniocentesis
397
amniocentesis and those who did not in age (and hence actual risk of having a baby with Down’s syndrome), marital status, socio-economic status or ethnic origin. They differed, however, in attitudes towards termination of an affected child and perceived risk of having an affected child: women who underwent amniocentesis held less negative attitudes towards termination of an affected foetus and perceived their risk of having an abnormal child as greater [151.
(a) Anxiety: both trait and state anxiety were assessed using the Spielberger State-Trait Anxiety Inventory (STAI) (18) (b) Attitudes towards the baby, and concern over the baby’s health: attitudes towards the baby were measured using a series of eight-point rating scales of various adjectives. Principal Components Analysis resulted in two factors which had eigen values of greater than 1 .O: ‘Positive Attitude Towards the Baby’, comprising the following attitudes: confident, attached, loving, maternal; the second factor was ‘Negative Attitude Towards the Baby’, composed of the following adjectives: uncertain, concerned, detached.* Scores for these two scales were determined by adding up the responses to the adjectives loading on the respective factors. The scale for ‘Positive Altitude to Baby’ ranged from 0 to 28; for Negative Attitude to Baby’ it ranged from 0 to 21. Concern about the baby’s health was measured in two ways: first by asking women to indicate how worried they felt about their baby’s health using an eight-point rating scale marked at one end: ‘not at all worried’, and at the other end: ‘extremely worried’; and second. by asking women how certain they felt that their baby was healthy, using a similar eight-point scale. Perceived likelihood of having an abnormal baby was measured by an eight-point scale asking ‘How likely do you think it is that the doctor will find something wrong with the baby inside you?’ (c) Demographic and obstetric history: information concerning women’s ages, socio-economic status, country of origin, number and outcome of pregnancies, and uptake of amniocentesis were taken from women’s medical notes. Data concerning uptake of amniocentesis were double checked against laboratory records.
Amniocentesis took place at about 16 weeks gestation. Women were asked to complete questionnaires on seven occasions: 12 weeks pregnancy (‘pre-test’), 17 weeks, 19 weeks, 28 weeks and 36 weeks pregnancy, two days and six weeks post-partum. Questionnaires administered at the time of amniocentesis were given to those having amniocentesis as they waited for the procedure; those not having amniocentesis were sent this second questionnaire by post. The third questionnaire, after the time when results of amniocentesis were available, was sent by post to both groups. The following two questionnaires were completed when women attended for routine antenatal clinic appointments at 28 and 36 weeks. The sixth questionnaire was completed by the women two days post-partum. The final questionnaire was sent by post six weeks post-partum. Analysis
The main analysis involved comparisons using unpaired t-tests between those who underwent amniocentesis and those who did not on the main outcome variables: anxiety, attitudes towards the baby, and concern about the baby’s health.
RESULTS
Of the 63 study participants 54 had amniocentesis, 9 did not. No abnormalities were detected in those undergoing amniocentesis, and none of the study sample gave birth to a child with a detected chromosomal abnormality.
There was no significant difference in anxiety levels between women who had amniocentesis and those who did not in the first trimester. Just prior to amniocentesis, those about to undergo amniocentesis were significantly more anxious than those not undergoing it (t = 4.87, df = 62, p < 0.0001; Fig. 1). Three weeks later, when
*Details
of the Principal
Components
Analysis
are obtainable
on request
from the authors.
398
T. M. MARTEAU
et al.
anxiety was measured again, and women having amniocentesis had received their results, the difference in anxiety between the groups was not significant. The anxiety levels of the groups remained similar up to, and including, six weeks post-partum.
o No amnocentesls
Test
+
I 12
I I I 28 17 19 Weeks pregnant
I
36
I I 2 6 days weeks Post partum
FIG. 1. Anxiety levelsduring pregnancy and post-partum
There were three possible explanations for the raised levels of anxiety prior to amniocentesis. These were the procedure, the possible outcome (detection of an abnormal foetus), or the different settings for questionnaire completion. Given the lack of effect of setting at the other time points, this is unlikely to be the explanation (see Fig. 1). In order to investigate the possible effect of concern about the outcome, the relationship between perceived likelihood of having an abnormal baby and state anxiety was examined (Table I). For women undergoing amniocentesis there were positive associations between perceived risk of having an abnormal baby and levels of anxiety. This was the case both prior to the time of having amniocentesis and again in the third trimester, prior to the birth of the baby. By contrast, anxiety in women not undergoing amniocentesis was not significantly related to perceived risk of having an abnormal child. TABL.E I.-ASSOCIATIONS BETWEEN STATE ANXIETY AND PERCEIVED RISK OF HAVING A BABY WITH A SERIOUS ABNORMALITY IN (a) WOMEN UNDERGOING AMNIOCENTESIS (PEARSON'S r) AND (b) WOMEN NOT UNDERC~OING AMNKKENTESIS (SPEARMAN'S RHO)
First trimester Prior to amniocentesis (14 weeks) Second trimester At time of amniocentesis (17 weeks) Three weeks post-amniocentesis (20 weeks) Third trimester 28 weeks 36 weeks
*p
SC 0.05
(a) Women undergoing amniocentesis (N = 54)
(b) Women not undergoing amniocentesis (N = 9)
+0.27*
-0.33
+0.30*
-0.46
+0.22
-0.41
+0.38* +0.31*
-0.32 -0.21
Psychological
Attitudes
towards
effects
399
of amniocentesis
the baby
There were no differences between women who had amniocentesis and those who did not in their attitudes towards their baby or its health in the first trimester (Figs 2-5). Women undergoing amniocentesis held significantly more negative attitudes towards their babies just prior to undergoing the procedure (t = 3.12; df = 59; p < 0.01; Fig. 2). After that time, there were no further differences between these two groups of women in their negative attitudes towards their babies. g21
l
-
a, 5 ,o 14 ~ 1 g El 7? 5 z? Z 0
Anmocentes~s
o No amniocentesis
x
Test
i t .-*\ 4 ..
I 12
k-d' I I 17 19
'~_-_--o I 2.5
I 36
Weeks pregnant FIG. 2. Negative
attitudes
towards
the baby during
I I 6 2 days weeks Post parturn
pregnancy
and post-partum
There was no evident effect of undergoing amniocentesis upon positive attitudes towards the baby: for both groups of women positive attitudes towards the baby increased over the period of the pregnancy (Fig. 3). Immediately after the birth, however, women who had undergone amniocentesis held less positive attitudes to their babies than women who had not undergone amniocentesis (t = 2.34; df = 52; this difference was no longer evident. p < 0.05). At six weeks post-partum * Test
l
Amniocentesis
a No amniocentesis
01 I2’ FIG. 3. Positive
I
I
I
17 I9 28 Weeks pregnant
attitudes
towards
the baby during
I
36
I 1 6 2 days weeks Post partum
pregnancy
and post-partum.
At the time of undergoing amniocentesis women who had the procedure were significantly less certain about the health of their babies (t = 2.55; df = 65; p < 0.05; Fig. 4). After the results of amniocentesis, they were no longer less certain.
400
T. M. MARTEAU et al.
0
FIG. 4. Certainty
There were no during pregnancy. were significantly undergone it (t =
I 12
I I I 17 19 28 Weeks pregnant
about the baby’s
I
36
health during
I
I
2 6 days weeks Post portum
pregnancy
and post-partum
differences between the groups in worry about the baby’s health Six weeks post-partum, however, women who had had amniocentesis more worried about their baby’s health than women who had not 3.27; df = 46; p < 0.01; Fig. 5). rest
.
Amnlocentesls
0
No amrmcentesls
I
0
FIG. 5. Worry
I
12
I
I
I
17 19 28 Weeks pregnant
about the baby’s
health during
I
I
I
36
2 6 days weeks Post parturn pregnancy and post-pat-turn
Spearman rank correlations were calculated to examine the extent to which attitudinal differences post-partum between women who underwent amniocentesis and those who did not may reflect pre-existing differences in women making different decisions. Immediately after the child’s birth, positive attitudes to the baby were significantly correlated with initial attitudes on this scale (r = 0.43; p < 0.01). Worry over the baby’s health six weeks after the birth was unrelated to such worry at the beginning of the pregnancy. DISCUSSlON
The results of this study suggest that anxiety surrounding amniocentesis is related both to the procedure and to the perceived likelihood of an abnormal result. These
Psychological effects of amniocentesis
401
effects are no longer evident after the procedure, and when the results are known. This pattern of results is in accord with other studies reporting high rates of satisfaction in women who undergo amniocentesis [2, 191. Immediately after the birth, however, women who had undergone amniocentesis held less positive attitudes towards their babies and at six weeks were significantly more worried about their baby’s health. These results raise the possibility that undergoing amniocentesis may have a long term effect upon mothers’ attitudes towards their children’s health. These results, however, should be interpreted with some caution. The sample of women not having amniocentesis was small and was not created by random allocation. It is therefore not possible to draw conclusions about the causal nature of these associations. While it is possible that undergoing amniocentesis has adverse effects upon mothers’ attitudes towards their children and their confidence in their children’s health, these differences may reflect pre-existing differences between women who choose to have amniocentesis and those who do not. Significant positive correlations between women’s attitudes towards their babies at the beginning of pregnancy and immediately postpartum support this explanation. The lack of association between initial worry and worry about the baby’s health at six weeks post-partum suggests that differences at this time are not explained by this attitude prior to amniocentesis. An alternative explanation that could account for this finding is that worry post-partum may reflect other pre-existing attitudes. At the beginning of pregnancy women who subsequently underwent amniocentesis had a Iess negative attitude towards termination of an affected pregnancy than women who did not undergo amniocentesis. This may reflect an underlying difference in attitude to normality, women having amniocentesis being more concerned to achieve a ‘perfect baby’. Such concerns may thus result in worry about the child’s health when it is born. A further explanation is that the greater worry about the baby’s health six weeks post-partum in women who underwent amniocentesis stems from a higher perceived likelihood at the beginning of pregnancy that the foetus was abnormal [ 151. Perhaps amniocentesis did not allay these concerns fully, and these women continue to worry that their baby may have something wrong with it. In our previous study of the impact of undergoing amniocentesis, women who did not undergo amniocentesis were more anxious in the third trimester than those who had undergone it [7] . Such a difference was not evident in the current study. Uptake of amniocentesis had increased from 52 to 86% over the 2-yr period separating the two studies. It may be that as frequency of uptake increases, those not having amniocentesis may hold firmer views on their decision and hence be less prone to doubt and anxiety later on. Evidence to support this explanation comes from our study of the uptake of a routine prenatal screening test: the minority (5%) who declined the test were significantly less anxious and less worried about their babies’ health prior to their decision [20] . Those who adopt a new technology in its early stages are different from those who adopt it later on [21] . It is likely therefore that any differences in impact of prenatal screening observed in studies conducted at different times will reflect this phenomenon. Thus any differences observed between those having a test and those not having it are likely to be affected by pre-existing differences that influenced their choice. While randomized controlled trials can go some way towards assessing the impact
T. M. MARTEAU et al
402
of new treatments and technologies, once the intervention has become accepted practice, such studies are no longer possible. It is important therefore to ensure that opportunities are not missed to evaluate experimentally the psychological effects of new technologies as they are introduced. This provides information on the likely effects once it has become common practice which can be used to plan how the technology is implemented into clinical practice so that adverse effects are minimised and beneficial effects maximized. Acknowlrd~~ments-This
We are grateful
work was supported
to the patients
by a grant from the Medical
and staff at the Royal
Free Hospital
Research Council for all their help.
(U.K.).
REFERENCES
1, WEINMAN J, JOHNSTON M. Stressful medical procedures: 2. 3. 4. 5. 6. 7.
8. 9. 10. 11. 12. 13. 14.
15. 16.
17.
18. 19. 20. 2I
an analysis of the effects of psychological interventions and of the stressfulness of the procedures. In 7bpics in Health Psychology (Edited by MAES S, SPEILBERGER CD, DEFARES PB, SARASON IG) pp. 205-217, 1988. CHEVIN A, FARNSWORTH PB, FREEMAN WL, DUNCAN PA, SHAPIRO LR. Amniocentesis for prenatal diagnosis-subjective patient response. N Y Stare J Med 1991, pp. 1406-1408. EVERS-KIEBOOMS G, SW~RTS A, VON DER BERGHE H. Psychological aspects of amniocentesis: anxiety feelings in three different risk groups. Clin Genetics 1988; 33: 196-206. MICHELACCI L, FAVA GA, TROMBIN~ G, ZIELEZMY M, BOVICELI.I L, ORLANDI C. Psychological distress and amniocentesis. Gynecol Obsret Invest 1984; 18: 40-44. FAVA GA, KELLNER R, MICHELACCI L, TROMBINI G, PATHAK D, ORLANDI C, BOVICEI.LI L Psychological reactions to amniocentesis: a controlled study. Am J Obsret Gynecol 1982; 143: 509-5 13. PHIPPS S, ZINN AB. Psychological response to amniocentesis: 1. Mood state and adaptation to pregnancy. Am J A4ed Gener 1986; 25: 131-142. MARTEAU TM, JOHNSTON M, SHAW RW, MICHIE S, KIDD J, NEW M. The impact of prenatal screening and diagnostic testing upon the cognitions, emotions and behaviour of pregnant women. J Psychosom Res 1989; 33: 7-17. READING AE. The influence of maternal anxiety on the course and outcome of pregnancy: A review. Health Psycho1 1983; 2: 187-202. BARNETT B, PARKER G. Possible determinants, correlates and consequences of high levels of anxiety in primiparous mothers. Psycho1 Med 1986; 16: 177-185. DAHL M, EKLUND G, SIJNDELIN C Early feeding problems in an affluent society. 11. Determinants. Acra Paediarr Stand 1986; 75: 380-387. PAGEL MD, SMILKSTEIN G, REGEN H, MONTANO D. Psychosocial influences on new born outcomes: a controlled prospective study. Sot Sci Med 1990; 30: 597-604. BISHOP K. Factors Influencing Amniocentesis Refusal. Disserfations Ahstracfs International 1987; 48: 746. BUNDEY S. Attitudes of 40-year-old college graduates towards amniocentesis. Br Med J 1978; 25 November, 1475-1477. MARTEAU TM, JOHNSTON M, SHAW RW, SLACK J. Factors influencing the uptake of screening for open neural tube defect and amniocentesis to test for Down’s syndrome. BrJ Ohstrt Gynaecol 1989; 96: 739-741. MARTEAU TM, KIDD J, COOK R, MICHIE S, JOHNSTON M, SLACK J, SHAW RW. Perceived risk not actual risk predicts uptake of amniocentesis. Br J O&et Gynaecol 1991; 98: 282-286. BAIRD PA. SADOVNICK AD, MCGILLIVRAY BC. Temporal changes in the utilisation of amniocentesis for prenatal diagnosis by women at advanced maternal age, 1976-1983. Prenarul Diagnosis 1985; 5: 191-198. NABER JM, HUETHER CA, GOODWIN BA. Temporal changes in Ohio amniocentesis utilization during the first twelve years (1972%1983), and frequency of chromosome abnormalities observed. Prenatal Diagnosis 1987; 7: 5 I-65. SPIELBERGER CD, GORSU~H RL, L,USHENE RF. Manual for the State-Trait Anxiety Inventory. Palo Alto: Consulting Psychologists Press, 1970. VINSON PC, FINLEY SC, DAVIS RO, HUGGINS WH, RIGDON DT, FINLEY WH. Amniocentesis for prenatal genetic studies: A reassuring experience. Am J Hum Genet 1980; 32: 135A. MARTEAU TM, JOHNSTON M, KIDD J, MICHI~ S, COOK R, SLACK J, SHAW RW. Psychological models in predicting uptake of prenatal screening. Psychology and Healrh 1992; 6: 13-22. KATZ E. The social itinerary of technical change: Two studies on the diffusion of innovation. Hum Organisctrion 1961; 20: 70-82.
o/P.~~chosomric
Printed
in Great
Research.
Vol.
36, No. 4. pp. 395402.
CO22-39!W92
1992.
$S.oO+ .oO
% 1992 Pergaman
Elrltam
Press plc
PSYCHOLOGICAL EFFECTS OF HAVING AMNIOCENTESIS: ARE THESE DUE TO THE PROCEDURE, THE RISK OR THE BEHAVIOUR? THERESA M. MARTEAU,* MARIE (Received
JANE KIDD,*
JOHNSTON,* 12 September
RACHEL
JOAN SLACKS 1990; accepted
COOK,*
SUSAN
MICHIE,*
and R. W. SHAW$
in revised form
5 June
1991)
Abstract-The purpose of the study was to examine the impact of amniocentesis on women at risk for having a baby with Down’s syndrome because of raised maternal age. Fifty-four of the study participants had amniocentesis and nine did not. At the time of the procedure, those having amniocentesis were significantly more anxious, less certain about the baby’s health, and held more negative attitudes towards the baby than women who did not undergo amniocentesis. For women undergoing amniocentesis there was a positive association between perceived risk of having an abnormal baby and anxiety. After the baby’s birth, women who had undergone amniocentesis held less positive attitudes to the baby and were significantly more worried about the baby’s health. These results suggest that the anxiety surrounding amniocentesis is related both to the procedure and to the perceived likelihood of an abnormal result. The differences between the groups after the birth seem more likely to reflect pre-existing attitudinal differences between the two groups, than the effects of amniocentesis.
INTRODUCTION UNDERGOING any medical procedure is usually associated with stress, which may be related to the procedure itself as well as the outcome [ 1 ] . There have been numerous reports describing the distress associated with undergoing amniocentesis and awaiting the results [2-41. There has, however, been some difficulty in identifying whether stress is associated with the procedure or the increased risk of foetal abnormality in these pregnancies. Several studies have attempted to determine the extent to which anxiety levels of women undergoing amniocentesis are due to the procedure by comparing their anxiety levels with those of women not undergoing amniocentesis. This observational method provides ambiguous results. In addition, the comparison groups have not been matched on one important variable: risk of having a child with an abnormality. Two studies, one by Fava and colleagues [ 51 and one by Phipps and Zinn [ 61 compared a group of women at risk of having an affected child, with a group of women not undergoing amniocentesis who were younger and hence at lower risk for having a child with Down’s syndrome. The differences in distress reported between the groups could have been a result of differing age, undergoing the procedure, their differing risk statuses, or a combination of these. Marteau and colleagues [7] controlled for age and, therefore, risk of having a *Health Psychology Unit, Royal Free Hospital School of Medicine. tDepartment of Clinical Genetics, Royal Free Hospital School of Medicine. iAcademic Department of Obstetrics and Gynaecology, Royal Free Hospital School of Medicine. Address for correspondence: Dr T. M. Marteau, Health Psychology Unit, Royal Free Hospital School of Medicine. London NW3 2QG, U.K. 395
396
T. M. MARTEAU et al.
child with Down’s syndrome in a prospective study. The main difference between those who underwent and those who declined amniocentesis was found in the third trimester: women who had undergone amniocentesis were significantly less anxious than women who had not. Two hypotheses were put forward for this finding: first, undergoing amniocentesis is reassuring in the longer term; second, women with an avoidant coping strategy do not undergo prenatal tests and are more anxious in anticipation of labour. A third hypothesis is that the raised levels of anxiety may be caused by the way doctors talk to women, for example bringing to their attention later in pregnancy that they have not undergone amniocentesis in the pregnancy. The total sample size in this study was small (N = 18). It is important to investigate this question further because of the suggested link between anxiety in pregnancy and perinatal complications, attitudes towards the foetus, and the early relationship between mother and child [ 8- 111. Given that whether an individual undergoes this procedure is not randomly determined, any observed differences between those undergoing the procedure and those not cannot be ascribed purely to the procedure. Those choosing to undergo amniocentesis differ from those who do not in their attitudes to termination, perceived risk of having an abnormal baby, and their fear of losing their current pregnancies [ 12-151. It is therefore important in interpreting the results of any study assessing the impact of a procedure to consider that any differences between those undergoing and those not undergoing the procedure may reflect differences which existed prior to the intervention and which may have influenced the decision of whether to undergo the procedure. As new technologies become incorporated into everyday use, so it is possible that their impact will alter. For example, as the numbers of women undergoing amniocentesis increases [ 16, 171 so a woman undergoing the procedure is more likely to know others who have undergone it. Her attitudes are therefore likely to be influenced more strongly by a process of social diffusion, than they would if it were a rare procedure. The possible effects of changes in use can be explored by comparing the impact upon women of undergoing amniocentesis some years apart in time. The current study has three aims: (a) To repeat our earlier prospective study, using a larger sample, in order to compare the psychological responses of women undergoing amniocentesis with those not undergoing the procedure; (b) To examine whether differences between those having and those noi having amniocentesis are associated with the procedure or factors predating the choice of amniocentesis; (c) To extend the study period to six weeks post-partum. METHOD Subjects All women up to 16 weeks pregnant aged 3X yr or over at the expected date of confinement, booking in for antenatal care at the Royal Free Hospital between September 1987 and August 198X were eligible for inclusion in the study. There were 103 such women during the study period. Of these, nine were excluded because they miscarried before the time when amniocentesis would have been carried out; four were not sufficiently fluent in English to complete the questionnaires; nine refused to participate; and 1X failed to complete a minimum of five questionnaires, with at least one completed in each trimester. Hence there were 63 full study participants. There were no differences between those who had
Psychological
effects
of amniocentesis
397
amniocentesis and those who did not in age (and hence actual risk of having a baby with Down’s syndrome), marital status, socio-economic status or ethnic origin. They differed, however, in attitudes towards termination of an affected child and perceived risk of having an affected child: women who underwent amniocentesis held less negative attitudes towards termination of an affected foetus and perceived their risk of having an abnormal child as greater [151.
(a) Anxiety: both trait and state anxiety were assessed using the Spielberger State-Trait Anxiety Inventory (STAI) (18) (b) Attitudes towards the baby, and concern over the baby’s health: attitudes towards the baby were measured using a series of eight-point rating scales of various adjectives. Principal Components Analysis resulted in two factors which had eigen values of greater than 1 .O: ‘Positive Attitude Towards the Baby’, comprising the following attitudes: confident, attached, loving, maternal; the second factor was ‘Negative Attitude Towards the Baby’, composed of the following adjectives: uncertain, concerned, detached.* Scores for these two scales were determined by adding up the responses to the adjectives loading on the respective factors. The scale for ‘Positive Altitude to Baby’ ranged from 0 to 28; for Negative Attitude to Baby’ it ranged from 0 to 21. Concern about the baby’s health was measured in two ways: first by asking women to indicate how worried they felt about their baby’s health using an eight-point rating scale marked at one end: ‘not at all worried’, and at the other end: ‘extremely worried’; and second. by asking women how certain they felt that their baby was healthy, using a similar eight-point scale. Perceived likelihood of having an abnormal baby was measured by an eight-point scale asking ‘How likely do you think it is that the doctor will find something wrong with the baby inside you?’ (c) Demographic and obstetric history: information concerning women’s ages, socio-economic status, country of origin, number and outcome of pregnancies, and uptake of amniocentesis were taken from women’s medical notes. Data concerning uptake of amniocentesis were double checked against laboratory records.
Amniocentesis took place at about 16 weeks gestation. Women were asked to complete questionnaires on seven occasions: 12 weeks pregnancy (‘pre-test’), 17 weeks, 19 weeks, 28 weeks and 36 weeks pregnancy, two days and six weeks post-partum. Questionnaires administered at the time of amniocentesis were given to those having amniocentesis as they waited for the procedure; those not having amniocentesis were sent this second questionnaire by post. The third questionnaire, after the time when results of amniocentesis were available, was sent by post to both groups. The following two questionnaires were completed when women attended for routine antenatal clinic appointments at 28 and 36 weeks. The sixth questionnaire was completed by the women two days post-partum. The final questionnaire was sent by post six weeks post-partum. Analysis
The main analysis involved comparisons using unpaired t-tests between those who underwent amniocentesis and those who did not on the main outcome variables: anxiety, attitudes towards the baby, and concern about the baby’s health.
RESULTS
Of the 63 study participants 54 had amniocentesis, 9 did not. No abnormalities were detected in those undergoing amniocentesis, and none of the study sample gave birth to a child with a detected chromosomal abnormality.
There was no significant difference in anxiety levels between women who had amniocentesis and those who did not in the first trimester. Just prior to amniocentesis, those about to undergo amniocentesis were significantly more anxious than those not undergoing it (t = 4.87, df = 62, p < 0.0001; Fig. 1). Three weeks later, when
*Details
of the Principal
Components
Analysis
are obtainable
on request
from the authors.
398
T. M. MARTEAU
et al.
anxiety was measured again, and women having amniocentesis had received their results, the difference in anxiety between the groups was not significant. The anxiety levels of the groups remained similar up to, and including, six weeks post-partum.
o No amnocentesls
Test
+
I 12
I I I 28 17 19 Weeks pregnant
I
36
I I 2 6 days weeks Post partum
FIG. 1. Anxiety levelsduring pregnancy and post-partum
There were three possible explanations for the raised levels of anxiety prior to amniocentesis. These were the procedure, the possible outcome (detection of an abnormal foetus), or the different settings for questionnaire completion. Given the lack of effect of setting at the other time points, this is unlikely to be the explanation (see Fig. 1). In order to investigate the possible effect of concern about the outcome, the relationship between perceived likelihood of having an abnormal baby and state anxiety was examined (Table I). For women undergoing amniocentesis there were positive associations between perceived risk of having an abnormal baby and levels of anxiety. This was the case both prior to the time of having amniocentesis and again in the third trimester, prior to the birth of the baby. By contrast, anxiety in women not undergoing amniocentesis was not significantly related to perceived risk of having an abnormal child. TABL.E I.-ASSOCIATIONS BETWEEN STATE ANXIETY AND PERCEIVED RISK OF HAVING A BABY WITH A SERIOUS ABNORMALITY IN (a) WOMEN UNDERGOING AMNIOCENTESIS (PEARSON'S r) AND (b) WOMEN NOT UNDERC~OING AMNKKENTESIS (SPEARMAN'S RHO)
First trimester Prior to amniocentesis (14 weeks) Second trimester At time of amniocentesis (17 weeks) Three weeks post-amniocentesis (20 weeks) Third trimester 28 weeks 36 weeks
*p
SC 0.05
(a) Women undergoing amniocentesis (N = 54)
(b) Women not undergoing amniocentesis (N = 9)
+0.27*
-0.33
+0.30*
-0.46
+0.22
-0.41
+0.38* +0.31*
-0.32 -0.21
Psychological
Attitudes
towards
effects
399
of amniocentesis
the baby
There were no differences between women who had amniocentesis and those who did not in their attitudes towards their baby or its health in the first trimester (Figs 2-5). Women undergoing amniocentesis held significantly more negative attitudes towards their babies just prior to undergoing the procedure (t = 3.12; df = 59; p < 0.01; Fig. 2). After that time, there were no further differences between these two groups of women in their negative attitudes towards their babies. g21
l
-
a, 5 ,o 14 ~ 1 g El 7? 5 z? Z 0
Anmocentes~s
o No amniocentesis
x
Test
i t .-*\ 4 ..
I 12
k-d' I I 17 19
'~_-_--o I 2.5
I 36
Weeks pregnant FIG. 2. Negative
attitudes
towards
the baby during
I I 6 2 days weeks Post parturn
pregnancy
and post-partum
There was no evident effect of undergoing amniocentesis upon positive attitudes towards the baby: for both groups of women positive attitudes towards the baby increased over the period of the pregnancy (Fig. 3). Immediately after the birth, however, women who had undergone amniocentesis held less positive attitudes to their babies than women who had not undergone amniocentesis (t = 2.34; df = 52; this difference was no longer evident. p < 0.05). At six weeks post-partum * Test
l
Amniocentesis
a No amniocentesis
01 I2’ FIG. 3. Positive
I
I
I
17 I9 28 Weeks pregnant
attitudes
towards
the baby during
I
36
I 1 6 2 days weeks Post partum
pregnancy
and post-partum.
At the time of undergoing amniocentesis women who had the procedure were significantly less certain about the health of their babies (t = 2.55; df = 65; p < 0.05; Fig. 4). After the results of amniocentesis, they were no longer less certain.
400
T. M. MARTEAU et al.
0
FIG. 4. Certainty
There were no during pregnancy. were significantly undergone it (t =
I 12
I I I 17 19 28 Weeks pregnant
about the baby’s
I
36
health during
I
I
2 6 days weeks Post portum
pregnancy
and post-partum
differences between the groups in worry about the baby’s health Six weeks post-partum, however, women who had had amniocentesis more worried about their baby’s health than women who had not 3.27; df = 46; p < 0.01; Fig. 5). rest
.
Amnlocentesls
0
No amrmcentesls
I
0
FIG. 5. Worry
I
12
I
I
I
17 19 28 Weeks pregnant
about the baby’s
health during
I
I
I
36
2 6 days weeks Post parturn pregnancy and post-pat-turn
Spearman rank correlations were calculated to examine the extent to which attitudinal differences post-partum between women who underwent amniocentesis and those who did not may reflect pre-existing differences in women making different decisions. Immediately after the child’s birth, positive attitudes to the baby were significantly correlated with initial attitudes on this scale (r = 0.43; p < 0.01). Worry over the baby’s health six weeks after the birth was unrelated to such worry at the beginning of the pregnancy. DISCUSSlON
The results of this study suggest that anxiety surrounding amniocentesis is related both to the procedure and to the perceived likelihood of an abnormal result. These
Psychological effects of amniocentesis
401
effects are no longer evident after the procedure, and when the results are known. This pattern of results is in accord with other studies reporting high rates of satisfaction in women who undergo amniocentesis [2, 191. Immediately after the birth, however, women who had undergone amniocentesis held less positive attitudes towards their babies and at six weeks were significantly more worried about their baby’s health. These results raise the possibility that undergoing amniocentesis may have a long term effect upon mothers’ attitudes towards their children’s health. These results, however, should be interpreted with some caution. The sample of women not having amniocentesis was small and was not created by random allocation. It is therefore not possible to draw conclusions about the causal nature of these associations. While it is possible that undergoing amniocentesis has adverse effects upon mothers’ attitudes towards their children and their confidence in their children’s health, these differences may reflect pre-existing differences between women who choose to have amniocentesis and those who do not. Significant positive correlations between women’s attitudes towards their babies at the beginning of pregnancy and immediately postpartum support this explanation. The lack of association between initial worry and worry about the baby’s health at six weeks post-partum suggests that differences at this time are not explained by this attitude prior to amniocentesis. An alternative explanation that could account for this finding is that worry post-partum may reflect other pre-existing attitudes. At the beginning of pregnancy women who subsequently underwent amniocentesis had a Iess negative attitude towards termination of an affected pregnancy than women who did not undergo amniocentesis. This may reflect an underlying difference in attitude to normality, women having amniocentesis being more concerned to achieve a ‘perfect baby’. Such concerns may thus result in worry about the child’s health when it is born. A further explanation is that the greater worry about the baby’s health six weeks post-partum in women who underwent amniocentesis stems from a higher perceived likelihood at the beginning of pregnancy that the foetus was abnormal [ 151. Perhaps amniocentesis did not allay these concerns fully, and these women continue to worry that their baby may have something wrong with it. In our previous study of the impact of undergoing amniocentesis, women who did not undergo amniocentesis were more anxious in the third trimester than those who had undergone it [7] . Such a difference was not evident in the current study. Uptake of amniocentesis had increased from 52 to 86% over the 2-yr period separating the two studies. It may be that as frequency of uptake increases, those not having amniocentesis may hold firmer views on their decision and hence be less prone to doubt and anxiety later on. Evidence to support this explanation comes from our study of the uptake of a routine prenatal screening test: the minority (5%) who declined the test were significantly less anxious and less worried about their babies’ health prior to their decision [20] . Those who adopt a new technology in its early stages are different from those who adopt it later on [21] . It is likely therefore that any differences in impact of prenatal screening observed in studies conducted at different times will reflect this phenomenon. Thus any differences observed between those having a test and those not having it are likely to be affected by pre-existing differences that influenced their choice. While randomized controlled trials can go some way towards assessing the impact
T. M. MARTEAU et al
402
of new treatments and technologies, once the intervention has become accepted practice, such studies are no longer possible. It is important therefore to ensure that opportunities are not missed to evaluate experimentally the psychological effects of new technologies as they are introduced. This provides information on the likely effects once it has become common practice which can be used to plan how the technology is implemented into clinical practice so that adverse effects are minimised and beneficial effects maximized. Acknowlrd~~ments-This
We are grateful
work was supported
to the patients
by a grant from the Medical
and staff at the Royal
Free Hospital
Research Council for all their help.
(U.K.).
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