Acute maternal social dysfunction, health perception and psychological distress after ultrasonographic detection of a fetal structural anomaly
A Kaasen, Department of Obstetrics, Oslo University Hospital, Rikshospitalet, 0027 Oslo, Norway. Email firstname.lastname@example.org
Please cite this paper as: Kaasen A, Helbig A, Malt U, Næs T, Skari H, Haugen G. Acute maternal social dysfunction, health perception and psychological distress after ultrasonographic detection of a fetal structural anomaly. BJOG 2010;117:1127–1138.
Objectives To predict acute psychological distress in pregnant women following detection of a fetal structural anomaly by ultrasonography, and to relate these findings to a comparison group.
Design A prospective, observational study.
Setting Tertiary referral centre for fetal medicine.
Population One hundred and eighty pregnant women with a fetal structural anomaly detected by ultrasound (study group) and 111 with normal ultrasound findings (comparison group) were included within a week following sonographic examination after gestational age 12 weeks (inclusion period: May 2006 to February 2009).
Methods Social dysfunction and health perception were assessed by the corresponding subscales of the General Health Questionnaire (GHQ-28). Psychological distress was assessed using the Impact of Events Scale (IES-22), Edinburgh Postnatal Depression Scale (EPDS) and the anxiety and depression subscales of the GHQ-28. Fetal anomalies were classified according to severity and diagnostic or prognostic ambiguity at the time of assessment.
Main outcome measures Social dysfunction, health perception and psychological distress (intrusion, avoidance, arousal, anxiety, depression).
Results The least severe anomalies with no diagnostic or prognostic ambiguity induced the lowest levels of IES intrusive distress (P = 0.025). Women included after 22 weeks of gestation (24%) reported significantly higher GHQ distress than women included earlier in pregnancy (P = 0.003). The study group had significantly higher levels of psychosocial distress than the comparison group on all psychometric endpoints.
Conclusions Psychological distress was predicted by gestational age at the time of assessment, severity of the fetal anomaly, and ambiguity concerning diagnosis or prognosis.
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In pregnant women, ultrasound examinations and invasive prenatal testing are related to significant psychological distress.1–5 Clinically significant congenital abnormality has been found in about 3% of all neonates.6 Prenatal detection of such abnormalities is associated with considerable psychological distress in the affected women demonstrated within 6 weeks after the diagnosis.7,8 Moreover, some studies have reported that anxiety influences both maternal and fetal circulation.9,10 Termination of pregnancy because of fetal anomalies is also associated with high levels of psychological distress in women.11–13
Nevertheless, early detection of congenital abnormalities has been recommended assuming that foreknowledge of a fetal anomaly in ongoing pregnancies enables the parents to prepare mentally, and that this results in reduced parental stress after delivery.14 This assumption has been challenged by Skari et al.,15 reporting increased parental psychological distress following prenatal diagnosis compared with postnatal diagnosis. They found postnatal distress levels to be highest if the fetal anomaly was detected between gestational weeks 25 and 30.15
However, methodological issues limit our ability to predict which women are vulnerable in the critical period following prenatal diagnosis, and which may be at risk for an adverse psychological and behavioural outcome. Skari et al. studied stress after delivery in both groups.15 Brisch et al. measured acute stress responses and coping strategies in pregnant women referred for suspicion of a fetal anomaly in the second trimester, and found high anxiety levels in those with fetal malformations compared with the group without.7 A small study by Brosig et al. studied psychological distress in future parents within a week of the prenatal diagnosis of a fetal cardiac malformation and found that severity of the cardiac malformation was associated with stress levels.16
We are not aware of any study on psychological and behavioural responses to prenatal diagnosis of fetal anomalies including a variety of congenital abnormalities and relating distress to gestational age at diagnosis, parity, socio-demographic variables, and diagnostic and prognostic ambiguity. Finally, most published studies on this subject have insufficient statistical power.
The aim of the present study was to predict acute psychosocial activation, i.e. social dysfunction, health perception and psychological distress (symptoms of intrusion, avoidance, arousal, anxiety and depression) in pregnant women shortly after detection of a fetal structural anomaly, and relate these results to women with normal ultrasound findings. We hypothesised that the severity of the anomaly, diagnostic and prognostic ambiguity, and advanced gestational age would increase psychosocial distress.
Pregnant women were included consecutively from May 2006 to February 2009. However, convenience sampling was undertaken during vacations and in periods with heavy clinical workload. Women were excluded if they were not fluent in Norwegian, had a multiple pregnancy, were less than 18 years old, or had an overt psychiatric diagnosis (e.g. psychosis, severe bipolar disorder, or drug abuse).
The study group consisted of 180 pregnant women with confirmed fetal structural anomalies detected by ultrasound. The women had been referred to a tertiary referral centre based on suspicion of a structural fetal anomaly following a local ultrasound examination as part of regular pregnancy care. All were included after 12 weeks of gestation (median 134 days of gestation, range 84–269 days of gestation).
The comparison group included 111 pregnant women with no history of fetal anomalies or severe obstetric complications, scheduled for delivery at our hospital. They were included following a routine ultrasound scan with normal findings (median 136 days of gestation, range 90–155 days of gestation).
Socio-demographic variables and medical and obstetric history were systematically collected based on self-report questionnaires or electronic charts. The time interval between the suspicion of an anomaly at the referring hospital (or the normal ultrasound scan in the comparison group) and inclusion into the current study was recorded. The tentative diagnosis following the first examination at the referral centre and gestational age at inclusion were recorded prospectively.
Participating women completed the questionnaires within a few days after the ultrasound examination at the referral centre. The questionnaires were filled in at the hospital and the women were instructed not to discuss their responses with anyone. Social dysfunction and health perception were assessed by the corresponding subscales of General Health Questionnaire (GHQ-28).17 Endpoints of psychological distress were assessed by the anxiety and depressive subscales of GHQ-28, Impact of Events Scale (IES-22),18,19 and Edinburgh Postnatal Depression Scale (EPDS).20
GHQ-28 has four subscales, each with seven items, measuring social dysfunction, health perception (somatic symptoms) and psychological distress (anxiety and severe depressive symptoms) during the preceding 2 weeks. Likert scoring (item scores 0-1-2-3, total range 0–84) was used to compare distress levels within and between groups. Clinically significant depression was defined as a GHQ-28 depression subscale case score ≥2. GHQ items 24, 25, 27 and 28 were used to assess suicidal ideation.21 The sum GHQ-28 case score provides an estimate of the prevalence of clinically significant psychological distress, defined as a sum case score ≥6 (item scores 0-0-1-1, total range 0–28).
IES-22 measures three dimensions of psychological and behavioural distress during the previous week. IES has three subscales of seven or eight items each: intrusion, avoidance and arousal. Intrusion is characterised by unbidden thoughts and images, troubled dreams, strong waves of feelings, and repetitive behaviour related to the experience of knowing about the fetal condition. Avoidance includes ideational constriction related to the fetal condition, denial of the consequences of the anomaly, blunted sensations, behavioural inhibition and awareness of emotional numbness. Arousal measures distress-associated psycho-physiological activation and includes items addressing anger and irritability, a heightened startle response, concentration difficulties and hypervigilance. Each IES item has a score range of 0–5 yielding a scoring range of 0–35 for intrusion and arousal, and 0–40 for avoidance. A score <9 in any of the dimensions was considered to be within the normal range, 9–19 was defined as a moderate response, and 20 or more indicated intrusion, avoidance, or arousal of clinical importance.22
The EPDS-10 consists of ten questions with a self-rating scale designed to detect postnatal depression. Five items measure dysphoric mood, two measure anxiety, and three (one per item) measure guilt, suicidal ideas and ‘not coping’ experienced during the previous 7 days. The EPDS-10 has been validated for use in pregnancy.23 We scored the EPDS-10 with Likert’s score (item score 0-1-2-3; total sum score range 0–30). An EPDS sum ≥10 was considered to be associated with mild depression and a score ≥13 was used to identify at least moderate depression.24,25
Ultrasound examination and counselling
At the tertiary centre the prenatal ultrasound examinations were performed by two consultants in fetal medicine. Specialists in pediatrics, pediatric surgery, pediatric cardiology, medical genetics or neurosurgery were consulted as needed. Only a few of the women had been counselled by these specialists before completing the questionnaires because of the short interval from the ultrasound scan to the inclusion.
Classification of fetal abnormalities
We classified fetal diagnoses according to severity and significant diagnostic or prognostic ambiguity at the time of inclusion. Consensus for the classification of each case was reached after discussion between three of the authors (A.K., A.H., G.H.). A prognosis was defined as ambiguous for one of two reasons: either the anomaly had significant inherent prognostic variation, or a definite diagnosis was dependent on the results of further investigations (e.g. an invasive test). If the result of further investigation was thought to be of great importance for the diagnosis or prognosis, severity was categorised as ‘severity not classified; anomaly awaiting clarification’. Fetal diagnoses were classified as follows:
- 1Category 1 Lethal or serious anomaly with no available treatment, with or without prognostic ambiguity (e.g. acrania, skeletal dysplasia with small thorax, holoprosencephaly, bilateral renal agenesis).
- 2Category 2 Serious anomaly with available treatment, but with prognostic ambiguity (e.g. myelomeningocele with hydrocephalus, diaphragmatic hernia with lung : head ratio <1.0, hypoplastic left heart syndrome).
- 3Category 3 Anomaly with mild to moderate severity, with available treatment, usually giving good results, but with prognostic ambiguity (e.g. bilateral clubfoot or cleft lip with no other markers, but condition known to be associated with syndromes not apparent prenatally).
- 4Category 4 Anomaly with mild to moderate severity, with available treatment, usually giving good results, and without prognostic ambiguity (e.g. gastroschisis, unilateral renal cysts, unilateral clubfoot).
- 5Category 5 Severity not classified; anomaly awaiting clarification. The prognosis was highly dependent on the results of an invasive test (e.g. omphalocele, bilateral clubfoot with chromosomal soft markers), or a reliable diagnosis was not available at inclusion because of an incomplete ultrasound examination (e.g. maternal obesity).
Inter-rater agreement of classification (including ambiguity), using the method of Fleiss,26 between the three investigators (A.K., A.H., G.H.) from a separate consecutive sample of 31 cases, was high (κ = 0.86).
Skari et al.15 reported that GHQ Likert sum scores differed by two-thirds SD for women diagnosed at 25–30 weeks of gestation compared with those diagnosed at an earlier gestational age. Based on this, we calculated that each gestational age group would require 40 patients to find the same difference with α = 0.05 and a power of 85%.
The questionnaires were optically readable, and completed questionnaires were scanned with Cardiff TeleForm version 10.1 (Autonomy Corporation plc, Cambridge, UK), stored in Access version 97 (Microsoft Corporation, Redmond, WA, USA), and calculations were performed with SPSS version 15.0 (Statistical Package for the Social Sciences, SPSS Inc., Chicago, IL, USA).
For descriptive statistics, we used parametric or non-parametric analyses, as appropriate. Analysis of variance (anova) was used to identify predictors of psychosocial distress, including the categorical (nonordinal) variable on classification of severity. Variables included in the analyses were: classification of severity including ambiguity, maternal age, parity, education, maternal chronic disease, gestational age at inclusion, and time interval from suspicion of fetal anomaly to inclusion. Continuous variables were transformed into categorical variables (clinically relevant groups). We made cross-tabulations concerning possible interactions between the background variables, and fulfilled the requirements of minimum expected cell frequency.
The anova was first performed with each of the independent variables separately. Next, a full analysis was run of all the relevant independent variables with all possible two-way interaction effects for each of the responses. Interaction effects with P > 0.1 were excluded. After reanalysing the data, the interaction effects with P < 0.05 were included in the final model. To control the overall significance of the test for those variables with more than two levels we used Tukey’s HSD post hoc test for detailed analyses of the effects. For all statements in the Results section when more than one level was used, this methodology is underlying the statements. Standard residual plots were used for model evaluation. Levene’s test of equality of error variances was used to test the assumptions underlying the analysis of variance. We used a significance level >0.05 to avoid violation of the assumption of homogeneity of variance.
To evaluate the separate contribution of diagnostic severity and prognostic ambiguity to the levels of social dysfunction, health perception and psychological and behavioural distress, we performed a linear regression analysis excluding all cases in category 5 (see above), i.e. including 142 cases. In this analysis we included severity (categories 1–4; categories 3 and 4 were combined into one category), ambiguity and gestational age. In the final analyses, P < 0.05 was considered significant.
The study was approved by the regional ethics committee. Written informed consent was obtained from women before participation. In accordance with the study protocol, any participant with a case score of 1 on items addressing suicidal ideation was contacted for clinical evaluation, and if necessary, was offered psychiatric assistance.
The study group had a significantly lower educational level, a wider range of gestational age at inclusion, and longer time intervals from the suspicion of fetal anomaly to inclusion than the comparison group (Table 1).
Table 1. Fetal and maternal baseline characteristics in the study (n = 180) and comparison (n = 111) group
|19–28 years||62 (34)||27 (24)||0.18|
|29–33 years||63 (35)||47 (42)|
|34–43 years||55 (31)||37 (33)|
|Compulsory primary and secondary school||9 (5)||3 (3)||<0.001|
|Junior college, practical||42 (23)||7 (6)|
|Junior college, academic||20 (11)||8 (7)|
|≤4 years of university||61 (34)||37 (33)|
|>4 years of university||47 (26)||55 (50)|
|Missing data||1 (1)||1 (1)|
|Married or cohabiting||175 (97)||111 (100)||0.19|
|Single||5 (3)|| |
|Chronic maternal disease*||35 (19)||18 (16)||0.58|
|Missing data||1 (1)||0.46|
|Primigravida||56 (31)||40 (36)|| |
|0||80 (44)||61 (55)||0.11|
|1+||100 (56)||50 (45)|
|Previous miscarriage||36 (20)||28 (25)||0.39|
|Previous termination of pregnancy||34 (19)||17 (15.3)||0.54|
|Previously affected fetus or child**||5 (3)|| || |
|In vitrofertilisation||13 (7)||8 (7.2)||1.0|
|Gestational age at inclusion|
|<18 weeks||42 (23)||17 (15)||<0.001|
|18–22 weeks||94 (52)||94 (86)***|
|>22 weeks||44 (24)|| |
|Invasive diagnosis****||114 (63)|| || |
|Time interval from suspicion of fetal anomaly (normal scan in comparison group) to inclusion|
|0–2 days||84 (47)||16 (14)||<0.001|
|3–6 days||62 (34)||58 (52)|
|≥7 days||34 (19)||37 (33)|
|‘Classification of severity’*****|
|1 Lethal or serious with no available treatment, with or without prognostic ambiguity||49 (27)|| || |
|2 Serious with available treatment but all with prognostic ambiguity||44 (24)|| || |
|3 Mild to moderate severity with available treatment often with a good result but all with prognostic ambiguity||21 (11)|| || |
|4 Mild to moderate severity, generally with good result following treatment, without prognostic ambiguity||28 (16)|| || |
|5 Severity not classified; awaiting clarification||38 (21)|| || |
In the study group, 27% of the fetal anomalies were classified as ‘lethal or serious with no available treatment’ and 24% as ‘serious with available treatment, but with prognostic ambiguity’ (categories 1 and 2). In 113 cases (63%), the diagnosis or prognosis was ambiguous (categories 1–3 and 5). Thirty-eight (21%) women were in category 5, ‘severity not classified; anomaly awaiting clarification’. Five women had a previous history of a child or fetus with a malformation.
Significantly higher levels of social dysfunction, negative health perception and psychological and behavioural distress were observed in the study group than in the comparison group, both in total scores (GHQ and EPDS) and in subscale scores (GHQ and IES) (Table 2). Subgroup analyses including only women at 18–22 weeks of gestation did not change the results (data not shown). Stratified analyses dividing the two groups by time interval from suspicion of fetal anomaly (normal scan in the comparison group) to inclusion did not change any of the P-values for the difference between the groups, except for the GHQ Likert sum score in the time period 0–2 days (P = 0.024) where means (SD) were 26 (10.6) versus 21 (12.7) in the study and comparison groups, respectively.
Table 2. Acute psychological responses to the results of ultrasound examination in pregnancy
|Intrusion||25 (1–35)||22.1 (8.6)||180||8 (0–27)||9.2 (6.3)||111||<0.001|
|Avoidance||10 (0–34)||11.1 (7.3)||179||1 (0–26)||2.4 (4.0)||111||<0.001|
|Arousal||13 (0–35)||14.6 (8.8)||179||3 (0–26)||4.0 (4.6)||110||<0.001|
|Total sum Likert||26 (8–61)||27.9 (11.4)||179||19 (8–59)||20.0 (8.9)||111||<0.001|
|Health perception||7 (0–18)||7.5 (3.8)||180||6 (0–19)||6.1 (3.6)||111||0.002|
|Anxiety||8 (0–21)||8.9 (4.4)||179||5 (0–18)||5.5 (3.4)||111||<0.001|
|Social dysfunction||9 (5–17)||9.6 (2.8)||179||7 (3–19)||8.1 (2.6)||111||<0.001|
|Depression||0 (0–16)||2.0 (3.1)||180||0 (0–10)||0.4 (1.3)||111||<0.001|
|Sum case score||7 (0–26)||8.1 (6.2)||179||3 (0–24)||4.6 (4.6)||111||<0.001|
|Sum||12 (0–29)||12.3 (5.9)||179||2 (0–17)||3.1 (3.1)||111||<0.001|
In the study group, the median value of the GHQ depression subscale was zero; however, 24 (13%) women had a GHQ depression case score ≥2 compared with two (2%) women in the comparison group; P < 0.001. The proportions of women with a score ≥20 on IES intrusion, avoidance and arousal were 71, 15 and 27% in the study group, and 8, 1 and 2% in the comparison group, respectively (P ≤ 0.001 for all comparisons). In the study group, 18 (10%) women had a high stress score (≥20) on all IES subscales (intrusion, avoidance and arousal), compared with none in the comparison group. Overall GHQ-28 case score ≥6, EPDS ≥ 10, and EPDS ≥ 13 depression scores were 60, 65 and 44% in the study group, and 36, 4 and 3% in the comparison group, respectively (P ≤ 0.001 for all comparisons). Fifteen women (8%) in the study group (and none in the comparison group) had case scores ≥1 on one of the four GHQ items indicating suicidal ideation. None of them attempted suicide.
Unadjusted and adjusted values (anova) for the IES subscales, GHQ total sum Likert and EPDS scores for each of the seven background variables are presented in Tables 3 and 4. In the study group, the adjusted anova showed that the outcome variables were related to severity of the fetal malformation including prognostic ambiguity, and gestational age at inclusion (Tables 3 and 4). We found lower IES stress levels (Table 3) and lower EPDS scores (Table 4) among those classified as category 4 (mild to moderate severity with good result following treatment and without prognostic ambiguity) compared with the other classification categories. Gestational age >22 weeks at inclusion significantly increased psychological distress concerning four of the nine outcome variables; in terms of GHQ total sum Likert score (P = 0.003), GHQ health perception (P = 0.005), GHQ anxiety (P = 0.025), and IES avoidance (P = 0.006). Pregnant women with chronic disease reported higher IES arousal, P = 0.03, and higher EPDS sum score, P = 0.049 (Tables 3 and 4). There were no consistent patterns in the interactions among components (results not shown).
Table 3. Unadjusted and adjusted mean values (95 % CI) of IES subscales as dependent variable in the study group (n = 180) using anova
|Fetal diagnostic and prognostic classifications; Category 1–5 (see text)||1||21.8 (19.4–24.1)||0.013||22.4 (19.7–25.1)||0.025*||12.2 (10.3–14.2)||0.001||12.9 (10.7–15.1)||<0.001**||14.3 (11.9–16.8)||0.086||16.8 (13.8–19.7)||0.032***|
|2||22.9 (20.4–25.4)||22.6 (19.7–25.5)||11.1 (9.0–13.2)||11.4 (9.1–13.8)||14.0 (11.4–16.6)||14.6 (11.6–17.7)|
|3||23.3 (19.7–26.9)||22.5 (18.6–26.3)||13.7 (10.6–16.7)||12.0 (8.9–15.2)||17.8 (14.0–21.5)||18.0 (14.0–22.0)|
|4||17.3 (14.2–20.4)||17.3 (14.1–20.6)||5.9 (3.3–8.5)||5.5 (2.8–8.2)||11.3 (8.1–14.6)||11.5 (8.1–14.9)|
|5||24.4 (21.7–27.1)||24.6 (21.6–27.6)||12.0 (9.8–14.2)||12.0 (9.6–14.5)||16.2 (13.4–19.0)||18.0 (14.8–21.1)|
|Maternal age (years)||19–28||20.8 (18.7–23.0)||0.25||21.0 (18.4–23.6)||0.49||10.2 (8.3–12.0)||0.25|| 9.4 (7.2–11.6)||0.18||14.8 (12.5–17.0)||0.97||15.7 (12.9–18.5)||0.45|
|29–33||23.4 (21.2–25.5)||23.0 (20.4–25.5)||10.8 (9.0–12.6)||10.9 (8.9–13.0)||14.6 (12.4–16.8)||17.0 (14.0–19.9)|
|34–43||22.1 (19.8–24.3)||21.6 (19.2–24.1)||12.4 (10.5–14.3)||12.0 (10.0–14.0)||14.4 (12.0–16.8)||14.7 (12.1–17.2)|
|Parity||0||21.1 (19.2–23.0)||0.17||21.1 (18.9–23.2)||0.24||10.3 (8.7–11.9)||0.21||10.4 (8.7–12.2)||0.49||14.9 (13.0–16.9)||0.66||16.2 (13.9–18.4)||0.56|
|1+||22.9 (21.2–24.6)||22.7 (20.6–24.8)||11.7 (10.3–13.1)||11.1 (9.4–12.9)||14.3 (12.6–16.1)||15.4 (13.2–17.6)|
|Education||≤Junior college||20.5 (18.5–22.5)||0.047||21.3 (19.0–23.6)||0.39||10.6 (8.9–12.4)||0.47||10.3 (8.3–12.2)||0.41||14.2 (12.1–16.2)||0.59||15.7 (13.2–18.1)||0.90|
|>Junior college||23.1 (21.5–24.7)||22.5 (20.4–24.5)||11.5 (10.1–12.9)||11.3 (9.6–13.0)||14.9 (13.2–16.6)||15.9 (13.7–18.0)|
|Chronic disease||No||21.8 (20.4–23.3)||0.55||21.2 (19.6–22.9)||0.43||11.2 (10.0–12.4)||0.70||10.6 (9.2–11.9)||0.76||14.1 (12.7–15.6)||0.16||13.9 (12.1–15.7)||0.030|
|Yes||22.8 (20.0–25.7)||22.5 (19.7–25.4)||10.7 (8.2–13.1)||11.0 (8.7–13.3)||16.5 (13.5–19.4)||17.7 (14.6–20.7)|
|Gestational age at inclusion (weeks)||<18||21.1 (18.5–23.7)||0.64||20.0 (17.0–23.0)||0.13|| 9.7 (7.5–11.9)||0.15|| 8.4 (6.0–10.9)||0.006***||12.5 (9.8–15.1)||0.17||13.1 (10.0–16.2)||0.067|
|18–22||22.2 (20.5–24.0)||21.5 (19.3–23.7)||10.9 (9.4–12.4)||10.1 (8.3–11.9)||14.9 (13.1–16.7)||16.5 (14.2–18.8)|
|>22||22.8 (20.2–25.3)||24.1 (21.4–26.9)||12.8 (10.6–14.9)||13.8 (11.5–16.0)||15.9 (13.3–18–5)||17.7 (14.8–20.7)|
|Time interval from suspicion of fetal anomaly to inclusion (days)||0–2||21.2 (19.4–23.1)||0.18||21.5 (19.2–23.9)||0.24||11.8 (10.2–13.4)||0.32||12.2 (10.3–14.1)||0.15||15.1 (13.2–17.0)||0.53||16.5 (14.1–18.9)||0.56|
|3–6||23.7 (21.6–25.9)||23.4 (21.1–25.8)||10.0 (8.1–11.8)||10.1 (8.2–12.0)||13.6 (11.3–15.8)||14.9 (12.4–17.4)|
|≥7||21.3 (18.4–24.2)||20.7 (17.6–23.7)||11.3 (8.8–13.8)||10.0 (7.5–12.6)||15.3 (12.3–18.3)||15.9 (12.7–19.1)|
Table 4. Unadjusted and adjusted mean values (95% CI) of GHQ total sum Likert score and EPDS sum as dependent variable in the study group using anova
|Fetal diagnostic and prognostic classifications; Category 1–5 (see text)||1||27.4 (24.2–30.6)||0.30||30.6 (27.0–34.3)||0.11||12.9 (11.2–14.5)||0.006||13.5 (11.6–15.4)||0.004**|
|2||25.8 (22.4–29.2)||26.9 (23.1–30.8)||12.8 (11.1–14.5)||13.0 (11.1–15.0)|
|3||31.3 (26.4–36.2)||31.1 (26.0–36.2)||13.8 (11.4–16.3)||13.7 (11.0–16.3)|
|4||26.7 (22.5–31.0)||26.3 (22.0–30.7)|| 8.5 (6.4–10.6)|| 8.5 (6.2–10.7)|
|5||30.0 (26.3–33.5)||32.7 (28.7–36.6)||12.8 (10.9–14.6)||13.0 (11.0–15.1)|
|Maternal age (years)||19–28||27.3 (24.4–30.2)||0.86||28.4 (24.9–31.9)||0.63||11.7 (10.2–13.2)||0.344||11.8 (10.0–13.6)||0.381|
|29–33||28.4 (25.5–31.3)||30.6 (27.3–34.0)||13.1 (11.7–14.6)||13.3 (11.5–15.0)|
|34–43||27.9 (24.9–31.0)||29.6 (26.3–32.8)||11.9 (10.3–13.5)||12.0 (10.4–13.7)|
|Para||0||28.4 (25.8–30.9)||0.61||29.8 (27.0–32.6)||0.77||12.5 (11.2–13.8)||0.649||12.8 (11.3–14.3)||0.333|
|1+||27.5 (25.2–29.8)||29.3 (26.5–32.1)||12.1 (10.9–13.2)||11.9 (10.5–13.4)|
|Education||≤Junior college||28.2 (25.5–30.9)||0.79||30.4 (27.3–33.4)||0.37||11.5 (10.1–12.9)||0.167||12.0 (10.4–13.6)||0.472|
|>Junior college||27.8 (25.6–29.9)||28.7 (26.0–31.4)||12.8 (11.6–13.9)||12.7 (11.3–14.1)|
|Chronic disease||No||27.1 (25.3–29.0)||0.12||28.0 (25.9–30.2)||0.17||12.0 (11.0–12.9)||0.209||11.2 (10.1–12.4)||0.049|
|Yes||30.5 (26.7–34.2)||31.0 (27.2–34.8)||13.4 (11.4–15.3)||13.5 (11.5–15.4)|
|Gestational age at inclusion (weeks)||<18||25.5 (22.1–28.9)||0.004||25.9 (21.9–29.8)||0.003*||11.2 (9.4–13.0)||0.416||10.8 (8.8–12.9)||0.128|
|18–22||26.7 (24.4–28.9)||28.0 (25.1–30.9)||12.7 (11.5–13.9)||12.7 (11.2–14.2)|
|>22||32.8 (29.4–36.1)||34.8 (31.1–38.4)||12.3 (10.5–14.0)||13.6 (11.7–15.4)|
|Time interval from suspicion of fetal anomaly to inclusion (days)||0–2||26.2 (23.7–28.6)||0.10||28.3 (25.3–31.4)||0.60||12.7 (11.5–14.0)||0.494||13.4 (11.8–15.0)||0.238|
|3–6||28.5 (25.7–31.4)||30.1 (27.0–33.2)||12.1 (10.6–13.6)||12.2 (10.6–13.8)|
|≥7||31.0 (27.1–34.8)||30.2 (26.1–34.2)||11.4 (9.4–13.3)||11.5 (9.4–13.5)|
In the multiple linear regression analysis, diagnostic and prognostic ambiguity predicted IES intrusive stress, IES avoidance and sum EPDS scores. Severity of malformation significantly influenced IES avoidance and sum EPDS scores; increasing severity was associated with increasing scores. Gestational age at inclusion was a weak predictor of IES avoidance but the only predictor of GHQ Likert sum scores with higher scores in those with higher gestational age (Table 5). In the regression analysis we found ambiguity to be the strongest predictor of psychological distress (Table 5). Including all seven independent variables in the regression analysis did not change the results presented in Table 5, except maternal age in IES avoidance (P = 0.029, B = 0.27).
Table 5. Influence of severity,* ambiguity, and gestational age at diagnosis on acute maternal stress in the group with fetal anomaly (n = 142) (multiple linear regression)
|Ambiguity (no = 0, yes = 1)||3.56||0.7, 6.4||0.015||3.11||0.8, 5.4||0.009||2.08||−0.8, 5.0||0.15||−0.66||−4.5, 3.2||0.73||2.60||0.7, 4.5||0.009|
|Severity (Lethal; Severe; Mild/Moderate)||−1.59||−3.4, 0.2||0.083||−2.37||−3.8, −0.9||0.002||−0.65||−2.5, 1.2||0.48||−0.44||−2.9, 2.0||0.72||−1.39||−2.6, −0.2||0.027|
|Gestational age (days)||0.01||−0.02, 0.1||0.418||0.03||0.0, 0.1||0.048||0.02||−0.02, 0.1||0.36||0.06||0.02, 0.1||0.006||0.003||−0.02, 0.03||0.79|
|R2, Adjusted R2||0.06, 0.04||0.11, 0.09||0.02, 0.001||0.06, 0.04 ||0.07, 0.05|
In the comparison group, all the average psychometric scores were within the normal range; except for IES intrusion with nine women (8%) having scores ≥20. Within the comparison group we did not find any significant difference in GHQ total sum Likert score between women with or without university education (P = 0.99).
Gestational age at inclusion was one of the strongest predictors of social dysfunction, health perception and acute psychological distress. The highest levels of psychosocial distress were observed in women that were >22 weeks of gestational age. The dependence of psychosocial distress on gestational age at diagnosis may be the result of different mechanisms. First, the attachment to the fetus changes throughout pregnancy,27,28 as exemplified by the increased intensity of grief related to increasing gestational age after pregnancy termination or pregnancy loss.11 Second, all women with a diagnosis >22 weeks had attended a previous ultrasound scan at 18 weeks, where no anomaly was suspected. The emotional shock or disappointment about the fetus having an anomaly might have been increased by an initial ultrasound examination showing that the fetus was normal. Third, self-determination concerning the option of pregnancy termination was limited in late pregnancy.15
The classification of fetal anomalies predicted maternal stress levels, as shown in Tables 3–5. As expected, the lowest psychosocial distress level was in the group with the best prognosis and no ambiguity (Category 4). This is in accordance with the observation by Brosig et al. who reported an association between severity of the anomaly and stress levels.16
The association between psychological distress and ambiguity is in agreement with Aite et al.,29 who reported that uncertainty concerning perinatal outcome influenced the psychological stress response in pregnant women with a fetus with congenital cystic adenomatoid lung malformation. The situation might be comparable to having a child diagnosed with cancer. A study from Sweden described elevated distress levels in parents when a childhood cancer diagnosis and treatment options were coupled with uncertain prognosis compared with a cancer diagnosis with a well-known effect on future health.30
The present classification of severity and ambiguity has not been published before, and the classification was based on the prognostic information available at the first visit at the tertiary centre. At the time of psychometric assessment 38 women were awaiting further diagnostic clarification, either because the diagnosis was highly dependent on the results of an invasive test or because the ultrasonographic examination was technically incomplete. For many of the remaining cases, the prognosis was ambiguous because the prenatal diagnosis was known to have significant inherent prognostic variation. The women were counselled on the basis of these uncertainties. At this stage of the diagnostic process we were unable to construct an ordinal scale of severity that included all women in the study group. We realise that our classification may be subjective, though a high inter-rater agreement (κ = 0.86) was obtained.
Offerdal has refined an extended version of the prognostic categories that were suggested in a Report of the Royal College of Obstetricians and Gynaecologists Working Party (1997) and discussed in Health Technology Assessment in 2000.31,32 Neither these, nor the categories suggested by Bijma et al. were adequate for our requirements because none of them included a dimension of ambiguity.33 To our knowledge, no other investigators have published an ordinal scale of prognostic severity including ambiguity following prenatal diagnosis.
The comparison group was included to describe social dysfunction, health perception and psychological distress in women with normal pregnancies, in other words to give the reader an impression of the magnitude of psychological responses in groups with and without fetal pathology. Despite lower distress scores in women with normal ultrasound findings, GHQ scores, including most of the subscales, were fairly high, which might reflect a significant period of distress before the ultrasound examination was performed.34 Another Norwegian study reported the psychological responses in women 0–4 days after the birth of a healthy baby and almost equivalent values to the present comparison group were found.21 Although the study and comparison groups differed concerning some background variables (Table 1), stratified analyses showed that these differences could not explain the divergence in the stress scores.
Depression may be part of a psychological response to a crisis. The frequency of depression varied, depending on the type of questionnaire and cutoff levels, with a high frequency when using EPDS and a low frequency when using GHQ depression subscale, respectively. The GHQ depression subscale is considered to identify clinically more serious depression than EPDS. The EPDS sum score includes other measures involved in the psychological response to an acute crisis, e.g. anxiety and guilt, which may explain the high frequency of women with a score above the established cutoff values of ≥10 or ≥13. Possibly EPDS is a better instrument to assess acute reactions (despair) whereas GHQ subscale depression appears to be a useful instrument for assessment of more severe symptoms of depression during pregnancy. The parallel assessment of depression using different methods clearly showed that the psychometric instruments presented here measure different psychological responses. Depression scores must be interpreted according to the applied questionnaire and its limitations.
The strengths of this study were the large sample size, its standardisation, and that psychosocial responses were measured by three different questionnaires. These questionnaires have been frequently used by others to evaluate psychological distress in connection with pregnancy and were chosen to facilitate comparisons of our results to previous reports.
However, self-rating questionnaires also have limitations. They are constructed to assess health and mental state during the preceding 1–2 weeks. The women in the study group were very distressed at the time of assessment, and their answers were probably heavily influenced by their immediate situation; in contrast, the comparison group was probably more likely to consider the entire indicated time interval when completing the questionnaire. Nevertheless, previous studies applying the questionnaires have demonstrated significant clinical association between scores and mental, somatic and psychological states at the time of assessments.35,36 Second, the present analyses included seven background variables. As in all observational studies we could not exclude the possible influence of other nonobserved variables (e.g. social relations, work situation, personality, or previous traumatic events). With the inclusion of several more variables, statistical power would have been lower and subsequent interpretation and multiple testing would have been more complex.
The present study provides new insight into the acute psychological and behavioural responses (within days) of pregnant women after detection of a fetal anomaly. Although they had been informed about the findings, prognosis and management options, they were still in the process of counselling. Many women were in a decision-making process concerning the possibility of pregnancy termination. Bijma et al. reported that emotional mechanisms, e.g. elevated stress, may have an important and beneficial function in the decision-making process by helping to maintain focus.37 On the other hand, too much distress might cause the decision-maker to ‘search frantically for a way out of the dilemma’, thereby increasing the probability that she may not consider the full range of consequences of her choice.38 Part of the cost of prenatal fetal anomaly detection is the psychological distress of the pregnant women involved.39 Our findings indicate that it is important for doctors and midwives to be aware of the high psychological distress levels among these women, and to individualise their care, according to predictors identified in this study.
After detection of a fetal anomaly, pregnant women experience clinically significant acute psychological distress. Health providers who counsel these women should be aware that advanced gestational age at diagnosis, the severity of the anomaly and significant prognostic ambiguity were the strongest predictors of psychological distress. These women may need extra psychological attention and support.
Disclosure of interests
None of the authors have any conflicts of interest.
Contribution to authorship
AK planned and performed the study, analysed the data and wrote the paper. AH participated in performing the study and writing the paper. UFM participated in planning the study and writing the paper. TN participated in analysing the data and writing the paper. HS participated in planning the study and writing the paper. GH participated in planning and performing the study and in writing the paper.
Details of ethics approval
The study and the procedures of the study received ethics approval from the Regional Ethics Committee of Southern Norway (Regional komité for medisinsk forskningsetikk Sør- Norge) 21 December 2005. Reference number S-05281.
This study was supported by The Norwegian Women’s Public Health Association, National Centre for Women’s Health, and Oslo University Hospital.
The authors want to express their gratitude to all women who participated in the study. We acknowledge Arvid Heiberg for contribution to the design of the study and Torhild Garen for preparing the Cardiff TeleForm scanning.