Adjustment to termination of pregnancy for fetal anomaly: a longitudinal study in women at 4, 8, and 16 months

Article Outline

• Abstract
• Materials and Methods
• Results
• Comment
• Acknowledgments
• References
• Copyright

Objective

We studied psychological outcomes and predictors for adverse outcome in 147 women 4, 8, and 16 months after termination of pregnancy for fetal anomaly.

Study Design

We conducted a longitudinal study with validated self-completed questionnaires.

Results

Four months after termination 46% of women showed pathological levels of posttraumatic stress symptoms, decreasing to 20.5% after 16 months. As to depression, these figures were 28% and 13%, respectively. Late onset of problematic adaptation did not occur frequently. Outcome at 4 months was the most important predictor of persistent impaired psychological outcome. Other predictors were low self-efficacy, high level of doubt during decision making, lack of partner support, being religious, and advanced gestational age. Strong feelings of regret for the decision were mentioned by 2.7% of women.

Conclusion

Termination of pregnancy for fetal anomaly has significant psychological consequences for 20% of women up to > 1 year. Only few women mention feelings of regret.

Key words: adjustment, fetal anomaly, psychological consequences, termination of pregnancy

Termination of pregnancy (TOP) for fetal reasons is a major life event.¹, ², ³, ⁴, ⁵, ⁶, ⁷, ⁸, ⁹, ¹⁰, ¹¹, ¹², ¹³ Short-term psychological sequelae include depressive and grief reactions.¹⁴

There is uncertainty as to which women are at risk for problematic coping in the long run. The current study aims to investigate predictors of persistent problematic outcome that can be identified before and during the first 16 months after TOP, in order to give clinicians instruments to effectively improve care for patients who terminate pregnancy for genetic reasons.

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Materials and Methods 

Women undergoing TOP because of fetal anomaly < 24 weeks of gestation were approached by their treating gynecologist at the time of the TOP. In The Netherlands, at the time of the study, TOP up to 14 weeks was usually done with dilatation and evacuation and thereafter by inducing labor with prostaglandins. Three university and 5 nonuniversity Dutch hospitals participated. The study was conducted between January 1999-October 2002. Women were asked permission to be sent a research information letter. In that information letter they were requested to participate in what was called “an extensive anonymous questionnaire study.” After written informed consent had been obtained, coded questionnaires were mailed at 4 months (Time 1, T1), 8 months (Time 2, T2), and 16 months (Time 3, T3) after TOP. The ethical committees of the participating hospitals had approved the study design.

The first part of the questionnaire contained questions on sociodemographic, medical, and obstetric history. A second part contained Dutch validated versions of questionnaires. Maladaptive symptoms of grief were measured by the Inventory of Complicated Grief (ICG), a 29-item self-report questionnaire with 5-point scales and a possible total score ranging from 29-145.¹⁵, ¹⁶ Symptoms of posttraumatic stress (PTS) were measured by the Impact of Event Scale (IES).¹⁷, ¹⁸ This is a widely used 15-item instrument measuring the impact of a named stressor—in this study, TOP. The scale deals with the components intrusion and avoidance in a 4-point response format (0, 1, 3, 5), with a possible total score ranging from 0-75.¹⁷ The Symptom Checklist (SCL)-90 was used to assess the level of generalized psychological malfunctioning.¹⁹, ²⁰ Because of the nature of the loss we also used the Edinburgh Postnatal Depression Scale (EPDS), a 10-item self-rating scale that has satisfactory sensitivity and specificity for assessing postpartum depression.²¹, ²² The following cutoff points were considered as indicative of pathologic outcome: ICG: ≥ 90¹⁵, ²³; IES: ≥ 26⁹, ²⁴; and SCL-90: ≥ 204 (95th percentile). For the EPDS a cutoff of ≥ 12 was used to define high depressive symptomatology.²⁵, ²⁶ In addition we used the Generalized Self-efficacy Scale (GSE), a 10-item measure in a 4-point response format, with a possible total score ranging from 10-40.²⁷ This instrument assesses self-confidence as a personality characteristic, with a high score reflecting that an individual believes that he or she can cope with difficult demands. A critical percentage of completed questions was a prerequisite for the use of the validated questionnaires. If a woman had not filled out the required minimum percentage for a questionnaire (90% on average), she was excluded for that questionnaire.

The last part of the questionnaire was especially designed for this study and contained questions about perceived external pressure during the decision period (yes/no); questions about doubt during the decision period and about perceived partner support after TOP (both to be answered on a 5-point scale ranging from 1 [very much]-5 [not at all]); and questions about regret after TOP (to be answered on a 5-point scale ranging from 1 [very applicable]-5 [absolutely not applicable]). For statistical reasons, these categories were later regrouped from 5-3 to form new parameters. The questionnaire had been first tested in a group of 20 couples with a history of TOP for fetal anomaly.

The treating gynecologist was responsible for providing diagnosis and viability assessment. Down syndrome was singled out as a separate entity, because the majority of programs for prenatal screening and diagnosis focus on this disease. All demographic and obstetric variables considered as predictors, either assessed at T1 only once or on each of the 3 occasions, are shown in Table 1. The total scores on the ICG, IES, SCL-90, and EPDS at 4, 8, and 16 months after termination were considered as the outcome measures.

TABLE 1. Demographic and obstetric data at inclusion and subsequently where appropriate

Variable	n
Age, y	35.0(4.4);19-44
Education, %
Primary school, high school	15.1
Secondary school	37.7
College or academic	47.2
Religious, %	59.6
Living children before termination, %	62.6
Gestational age at termination, wk	18.0(3.5);12-24
Method of termination, %
Dilatation and evacuation	20.1
Induced labor	79.9
Viability, %	55.6
Down syndrome, %	37.4
Elapsed time termination to inquiry, wk
T1	14.6(2.4);10-22
T2	35.4(2.7);32-50
T3	65.5(3.3);58-78
New pregnancy since termination, %
T1	3.4
T2	34.1
T3	56.5

Total number of participants with measurements on 3 occasions was 147. Data are presented as proportion (%) or as mean (SD) and range.

T1, 4 mo after termination of pregnancy (TOP); T2, 8 mo after TOP; T3, 16 mo after TOP.

Korenromp. Adjustment to termination of pregnancy for fetal anomaly. Am J Obstet Gynecol 2009.

Software (SPSS, for Windows, version 12.01; SPSS, Inc, Chicago, IL) was used for data management and statistical analysis. Results were summarized with the use of standard descriptive statistics: counts and percentages for categorical variables and means, SD, and ranges for continuous variables. Groups were compared for equivalence in baseline characteristics using the χ² test or Fisher exact test, as appropriate, for categorical measures and Student t test for continuous variables. Multilevel analysis (mixed model option) was used to identify variables that had an independent effect on the time course of the outcome measures. Fixed effects were considered for all predictors and random effects for elapsed time and participants.

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Results 

In all, 300 women were invited to participate, and 217 of them completed all questionnaires at T1, a participation rate of 72.3%. The 83 patients who did not participate did not differ from the participants with regard to the viability of the anomaly and the proportion of fetuses with Down syndrome. Subsequently, 178 and 153 women participated at T2 and T3, respectively. Of the 217 women who participated at T1, 147 (68%) women completed the questionnaires on all 3 occasions. The attrition group, ie, women who filled out the questionnaires at T1 but not at T2 and/or T3 (n = 70), differed from full participants (n = 147) in that this group contained more terminations at an early gestational age and more terminations by dilatation and evacuation, but the psychological outcome measures at T1 were similar.

Subject characteristics are presented in Table 1. The women were generally at advanced age, well educated, and all had a male partner. There was a small overlap in gestational age when patients were divided in 2 groups according to the method of termination: dilatation and evacuation (mean, 13 weeks) or induction of labor (mean, 19 weeks). Subsequent pregnancies were increasingly reported as the study progressed. Psychological data are presented in Table 2. Of women, 17% indicated that they had had severe feelings of doubt and 12% had perceived pressure during the period of decision making. Partner support was generally perceived as excellent or sufficient, and < 5% of women reported no support at all. The response categories “moderate/poor” and “not at all” were therefore combined in further analyses. The scores on the GSE inventory were similar on all occasions and showed extreme intraindividual stability over time (P = .99). On each occasion, approximately 14—not always the same—women indicated that the questionnaire phrase “I regret the decision to terminate the pregnancy” was applicable to them; 3-4 of these women reported strong feelings of regret.

TABLE 2. Psychological data at inclusion and subsequently where appropriate

Outcome measure	T1	T2	T3
Doubt in decision period, %
(Very) much	17.0
Moderate	45.6
Not at all	37.4
Perceived pressure in decision period, %	12.2
Regret decision, %
Very	2.7	2.0	2.7
Partially	6.8	7.4	6.8
(Absolutely) not applicable	90.5	90.6	90.5
Perceived partner support, %
(Very) much	83.6	75.9	78.9
Moderate/poor	3.0	19.3	16.2
Not at all	3.4	4.8	4.9
Self-efficacy (GSE), mean (SD); range	31.0(4.8); 15-40	31.0(5.0); 17-40	30.9(4.9); 12-40

Total number of participants with measurements on 3 occasions was 147. Data are presented as proportion (%) or as mean (SD) and range.

GSE, Generalized Self-efficacy Scale; T1, 4 mo after termination of pregnancy (TOP); T2, 8 mo after TOP; T3, 16 mo after TOP.

Korenromp. Adjustment to termination of pregnancy for fetal anomaly. Am J Obstet Gynecol 2009.

The psychological outcome measures grief, PTS symptoms, psychological malfunctioning, and depression were fairly intercorrelated on each occasion. The r values ranged from 0.59-0.74 at T1, from 0.65-0.79 at T2, and from 0.37-0.74 at T3 (P < .001 for all relationships). The lowest r values were consistently found for the relationship between the IES and SCL scores.

All outcome measures declined with time, as well as the proportions of women with a score in the pathological range according to the predefined cutoff points (Figure 1 and Table 3). They were highest for IES and EPDS, where 20.5% and 13% of women, respectively, still showed pathological scores at 16 months.

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• FIGURE 1. 

  Distribution of raw data for each of 4 psychological outcome measures: grief (Inventory of Complicated Grief [ICG]), posttraumatic stress symptoms (Impact of Event Scale [IES]), psychological malfunctioning (Symptom Checklist-90 [SCL]), and depression (Edinburgh Postnatal Depression Scale [EPDS]). Dotted lines = cutoff levels to define pathology.

• Korenromp. Adjustment to termination of pregnancy for fetal anomaly. Am J Obstet Gynecol 2009.

TABLE 3. Psychological outcome measures in 147 women 4, 8, and 16 months after termination of pregnancy

Outcome measure	T1	T2	T3
	Mean, SD pathologya	Mean, SD pathologya	Mean, SD pathologya
Grief (ICG)	58.8(19.6)8.8%	54.0(18.2)b4.8%	50.1(16.5)b,c2.1%
Posttraumatic stress symptoms (IES)	25.2(14.2)45.8%	21.4(15.1)b36.7%	15.5(12.4)b,c20.5%
Psychological malfunctioning (SCL)	144(50)12.2%	128(39)b7.5%	121(33)b,c4.8%
Depression (EPDS)	8.3(5.7)27.9%	6.9(4.9)b19.7%	5.3(4.4)b,c13.1%

Data are presented as mean (SD) and as proportion of women with score above cutoff level to define pathology.

Statistical significance is indicated after Bonferroni correction for repeated measurements.

EPDS, Edinburgh Postnatal Depression Scale; ICG, Inventory of Complicated Grief; IES, Impact of Event Scale; SCL, Symptom Checklist; T1, 4 mo after termination of pregnancy (TOP); T2, 8 mo after TOP; T3, 16 mo after TOP.

Korenromp. Adjustment to termination of pregnancy for fetal anomaly. Am J Obstet Gynecol 2009.

The effects of predictors on the outcome measures were analyzed using multilevel analysis. Maternal age, level of education, having living children before TOP, the TOP method, estimated viability of the unborn, Down syndrome, and perceived pressure at decision making had no significant contribution to the models. The variables of statistical importance and the final models are summarized in Table 4.

TABLE 4. Overview of results of multilevel modeling for total sample (n = 147 women)

Variable	Grief (ICG)	Posttraumatic stress symptoms (IES)	Psychological malfunctioning (SCL)	Depression (EPDS)
Constant	56.2(3.4);P<.0001	27.9(2.4);P<.0001	150(6.6);P<.0001	10.1(0.6);P<.0001
Elapsed time, wk	-0.17(0.02);P<.0001	-0.20(0.02);P<.0001	-0.41(0.07);P<.0001	-0.06(0.01);P<.0001
Religious	5.9(2.59);P=.024	5.4(1.9);P=.006	n.s.	n.s.
Gestational age, wk	0.65(0.37)a	0.63(0.27);P=.020	n.s.	n.s.
New pregnancy	n.s.	n.s.	-13.3(5.3);P=.014	n.s.
Partner support at T1
1. (Very) muchb	-3.9(1.6);P=.018	-5.0(1.6);P=.002	-11.6(4.1);P=.005	-2.0(0.6);P<.0001
Doubt at decision
1. (Very) muchc	11.3(3.9);P=.005	n.s.	13.1(7.7)a	n.s.
2. Moderatec	5.6(2.8);P=.045	n.s.	11.0(5.7)a	n.s.
Self-efficacy at T1 (GSE)	-0.55(0.18);P=.002	-0.35(0.16);P=.025	-2.1(0.4);P<.0001	-0.29(0.05);P<.0001

Presented are estimates (± SE) of predictors and level of significance of their contribution to models. Note that estimates must be read as regression coefficients for continuous variables and as change from outcome measure (constant) relative to reference category for categorical variables.

EPDS, Edinburgh Postnatal Depression Scale; GSE, Generalized Self-efficacy Scale; ICG, Inventory of Complicated Grief; IES, Impact of Event Scale; SCL, Symptom Checklist; T1, 4 mo after termination of pregnancy.

Korenromp. Adjustment to termination of pregnancy for fetal anomaly. Am J Obstet Gynecol 2009.

Being religious and being at an advanced gestational age at TOP were associated with worse scores on grief and PTS symptoms, while the presence of a new pregnancy at T2 or T3 was associated with better scores on SCL only. Women who experienced adequate or good partner support showed better scores on all outcome measures. Women who had experienced serious doubt about their decision had worse scores on grief (ICG) and psychological malfunctioning (SCL). Self-efficacy was an important determinant of psychological functioning after TOP in each model, with poor self-efficacy related to more negative scores on the outcome measures. There were no significant interaction effects of elapsed time by any of the predictors regarding the 4 outcome measures.

In the next step of analysis we investigated whether women with initially poor scores on the outcome variables (distress) continued to have poor scores at follow-up and whether others showed late onset of distress. Pathological or normal score on a particular questionnaire was classified on each of the 3 occasions. The women were then categorized according to whether they: (1) were not distressed; (2) were distressed at T1 and on at least 1 subsequent occasion (remained distressed); or (3) were not distressed at T1 but distressed at either T2 or T3 (late onset) (adapted from Boyle et al²⁸). Figure 2 and Table 3 show that the proportions of women with pathological scores for the outcome measures varied widely. For grief (ICG), the values were 8.8%, 4.8%, and 2.1% at T1, T2, and T3, respectively; for symptoms of PTS (IES): 45.8%, 36.7%, and 20.5%, respectively; for psychological malfunctioning (SCL-90): 12.2%, 7.5%, and 4.8%, respectively; and for depression (EPDS) 27.9%, 19.7%, and 13.1%, respectively. Only a minority of women displayed late onset of distress at T2 or T3: 2.0% and 0% (ICG), 7.5% and 3.4% (IES), 3.4% and 0.7% (SCL-90), and 8.8% and 1.4% (EPDS), respectively. For all outcome measures, the distress rates declined over time, with the largest reductions to occur from T1-T2, but the change did not sustain between T2-T3, except for IES (Figure 2). In addition, but not derivable from Figure 2 or Table 3, 88% (ICG), 43% (IES), 83% (SCL-90), and 63% (EPDS) of women did not show pathological scores at any occasion.

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• FIGURE 2. 

  Patterns of continuity and change in percentages (resolution, pathology onset) for 4 psychological outcome measures in women with normal and pathological scores on first occasion (4 months).

• EPDS, Edinburgh Postnatal Depression Scale; ICG, Inventory of Complicated Grief; IES, Impact of Event Scale; SCL, Symptom Checklist.

• Korenromp. Adjustment to termination of pregnancy for fetal anomaly. Am J Obstet Gynecol 2009.

If a woman had a score in the pathological range at T1, she had a fair chance of being distressed subsequently (Table 5). In all, 33% and 22% of women were consistently distressed for IES and EPDS, respectively, and the figures were even higher if their score at T2 was disregarded. This indicates that the best predictor of persistent problematic adaptation is a pathological score at T1.

TABLE 5. Continuing pathology on 2 subsequent occasions in women with scores in the pathological range on the first occasion

Pathology	Grief (ICG)	Posttraumatic stress symptoms (IES)	Psychological malfunctioning (SCL)	Depression (EPDS)
Cutoff level	≥90	≥26	≥204	≥12
T1	n = 14; 9.5%	n = 67; 45.6%	n = 18; 12.2%	n = 41; 27.9%
T1, T3, not T2	n = 3; 21.4%	n = 24; 35.8%	n = 6; 33.3%	n = 13; 31.7%
T1, T2, and T3	n = 2; 14.3%	n = 22; 32.8%	n = 3; 16.7%	n = 9; 22.0%

Presented are numbers of women involved. Distress rates at T1 are expressed as percentage of total sample (n = 147). Rates of continuing distress are expressed as percentage of number distressed at T1.

EPDS, Edinburgh Postnatal Depression Scale; ICG, Inventory of Complicated Grief; IES, Impact of Event Scale; SCL, Symptom Checklist; T1, 4 mo after termination of pregnancy (TOP); T2, 8 mo after TOP; T3, 16 mo after TOP.

Korenromp. Adjustment to termination of pregnancy for fetal anomaly. Am J Obstet Gynecol 2009.

As the level of doubt at the time of decision was repeatedly ascertained as an important determinant, we looked into factors associated with doubt during the decision period. Those with possible clinical relevance were the number of previous miscarriages (P < .001), lack of intracouple consensus about the decision (P < .0001), doubt about the correctness of the diagnosis (P = .011), and lack of knowledge about the disease (P = .009).

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Comment 

In this study, we report on 147 women who responded to questionnaires designed to assess psychological well-being 4, 8, and 16 months after genetic TOP. TOP for fetal anomaly affects women deeply. Four months after termination, a considerable number of participants still had serious problems: 46% and 28% scored above the predetermined cutoff point for symptoms of PTS and depression, respectively. Persistent problematic adaptation was well predicted by the first measurement, and one-third and one-fifth of women with abnormal scores at the first assessment for PTS and depressive reactions, respectively, also had abnormal scores at both subsequent assessments. Late onset of problematic adaptation did not occur frequently. In spite of the large and long-lasting psychological consequences of TOP for fetal anomaly, < 3% of women at each occasion mentioned feelings of strong regret. There was a clear improvement over time for all the women for all outcome measures. In the long run, the majority of women adapted well to their loss.

We examined predictors for long-lasting maladjustment. An initially high level of distress was strongly predictive for persistent disturbances. Other predictors were low self-efficacy, high level of doubt during decision making, lack of partner support, being religious, and advanced gestational age. Factors associated with doubt at decision were previous miscarriages, lack of intracouple consensus about the decision, doubt about the correctness of the diagnosis, and lack of knowledge about the disease.

A limitation of this study is the lack of detailed information on the nonresponse group. This might have caused selective nonresponse, because people with psychological morbidity conceivably decline participation in a study more frequently. The same might hold true for the attrition group, although the initial scores of this group did not differ from the study group. A second limitation is that, as in all other studies in this field, premeasurements for well-being and personality characteristics are lacking. However, the fact that the scores of the personality characteristic self-efficacy (GSE)²⁷ remained stable at all 3 measurements for the whole group as well as at intraindividual levels, in combination with the clear decrease of all outcome measures, strongly suggests that this personality characteristic was assessed in a valid way.

The results of the current longitudinal study were remarkably similar to those of our retrospective study, in which we assessed psychological outcome 2-7 years after TOP.⁹ There were 2 differences. First: in the retrospective study, a disorder compatible with extrauterine survival at least beyond 6 months, such as Down syndrome, was associated with a higher level of psychological morbidity. This was not found in the current prospective study covering the first 16 months after TOP. The difference might be due to the fact that relatively shortly after TOP, termination is experienced as a major provoking event irrespective of the underlying disorder, while only after some years, reflective thoughts on the viability are allowed. A second difference with the retrospective study was that a higher level of education resulted in better outcome in the long run but did not protect against short-term morbidity. Although in the short term emotional distress may have been overwhelming, long-term coping benefits from a higher education. In Figure 3, we compare the percentages of pathological outcome of PTS symptoms (IES) of the current longitudinal study with those of our retrospective study⁹ and with data of a study on women 3 months after a normal birth.²⁹ Problematic reactions diminish over time until 16 months after TOP, after which they appear to stabilize.

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• FIGURE 3. 

  Percentage of women showing pathological level of posttraumatic stress symptoms (Impact of Event Scale [IES]) in months and years after termination of pregnancy. Cutoff point for pathology ≥ 26.

• ^aReference group: E. Olde²⁹; ^bIES-R recalculated into IES.

• Korenromp. Adjustment to termination of pregnancy for fetal anomaly. Am J Obstet Gynecol 2009.

The high percentage (46%) of women with poor psychological outcome 4 months after the event confirms that TOP is a major life event and should be considered as such, not only by those involved in the care of patients but also by the social surrounding, such as family, friends, and employers. Fully in line with the findings of the current study, research on the consequences of other major life events indicates that an early high level of distress is strongly predictive for later psychological complications.²⁸, ³⁰ Counselors, therefore, should especially be alert to early problematic reactions.

These data can influence clinical care. Clinicians should focus on providing information, reassurance, and multidisciplinary care. Extensive counseling and information about the disease of the child may diminish feelings of doubt. Patients should be reassured that feelings of trauma, grief, and depression are common and normal and that most women ultimately come to terms with this traumatic event but that they need time, often > 1 year. Partners should be involved as much as possible. Couples should have access to consultation as frequently as necessary before and after termination, and this may involve the gynecologist, geneticist, social worker, and/or psychologist. Routinely given preventive interventions have never proved effective in bereavement or traumatic events and might even lead to the opposite of what is desired.³⁰, ³¹ On the basis of our results we suggest that offering psychological help should be restricted to women with low self-efficacy scores, identifiable by the use of simple questionnaires²⁷, ³²; to women who show high levels of doubt during the decision process; and to women who show serious signs of distress at checkup visits.

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Acknowledgments 

We thank all respondents for their time and (perhaps painful) effort.

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