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The Journal of Maternal-Fetal & Neonatal Medicine
ISSN: 1476-7058 (Print) 1476-4954 (Online) Journal homepage: http://www.tandfonline.com/loi/ijmf20
Modifiers of stress related to timing of diagnosis in
parents of children with complex congenital heart
disease
Nelangi M. Pinto, Cindy Weng, Xiaoming Sheng, Kimberly Simon, Janice B.
Byrne, Thomas Miller & Michael D. Puchalski
To cite this article: Nelangi M. Pinto, Cindy Weng, Xiaoming Sheng, Kimberly Simon, Janice
B. Byrne, Thomas Miller & Michael D. Puchalski (2016): Modifiers of stress related to timing
of diagnosis in parents of children with complex congenital heart disease, The Journal of
Maternal-Fetal & Neonatal Medicine, DOI: 10.3109/14767058.2015.1125465
To link to this article: http://dx.doi.org/10.3109/14767058.2015.1125465
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2. http://informahealthcare.com/jmf
ISSN: 1476-7058 (print), 1476-4954 (electronic)
J Matern Fetal Neonatal Med, Early Online: 1–7
! 2016 Taylor & Francis. DOI: 10.3109/14767058.2015.1125465
ORIGINAL ARTICLE
Modifiers of stress related to timing of diagnosis in parents of children
with complex congenital heart disease
Nelangi M. Pinto1
, Cindy Weng2
, Xiaoming Sheng2
, Kimberly Simon1
, Janice B. Byrne2,3
, Thomas Miller1
, and
Michael D. Puchalski1
1
Division of Pediatric Cardiology, 2
Department of Pediatrics, and 3
Department of Obstetrics and Gynecology, University of Utah, Salt Lake City, UT,
USA
Abstract
Objective: Prenatal diagnosis of congenital heart disease (CHD) reportedly increases parental
stress compared with postnatal diagnosis. We investigated the association of timing of
diagnosis with parental stress and modifiers of this relationship.
Methods: We enrolled parents with a fetus/infant diagnosed prenatally (Group 1) or postnatally
(Group 2) with CHD requiring intervention prior to newborn discharge. Parents completed a
Basic Symptom Inventory (BSI) – at diagnosis, birth, and follow-up. Adjusted mixed effects
regression models compared scores.
Results: The BSI was completed by 105 families (Group 1, n ¼ 60 and Group 2, n ¼ 45). On
regression modeling, anxiety and global stress were lower in Group 1 (effect size À0.19 to
À0.62) at diagnosis and birth though not at follow-up. When stratified by gender, Group 1
scores for anxiety and stress were primarily lower in fathers. Within Group 1, mothers scored
higher in all domains and later gestational age at diagnosis was associated with higher anxiety
and stress.
Conclusions: Contrary to prior reports, parents of prenatally diagnosed infants with CHD had
lower anxiety and stress than those diagnosed postnatally after adjusting for severity.
Identifying those most vulnerable and modifiable risk factors will allow us to appropriately
target psychosocial services for families with a CHD diagnosis.
Keywords
Anxiety, congenital heart disease, depression,
prenatal diagnosis, ultrasound
History
Received 30 September 2015
Revised 20 November 2015
Accepted 24 November 2015
Published online 3 March 2016
Introduction
The advent of prenatal testing and detection of childhood
disease has provided increasing amounts of information and
choices to parents before birth. While prenatal diagnosis of
conditions such as congenital heart disease (CHD) may
improve perioperative stability and increase parental and
medical preparation [1–4], there is increasing focus on the
psychological impact of these early diagnoses on parents.
While intuitively it might be expected that prenatal knowledge
of complex disease would allow parents to prepare themselves
and thus have less postnatal anxiety, the opposite has been
reported. In congenital malformations requiring neonatal
surgery, parents who received prenatal diagnoses were more
stressed at the time of birth and on follow-up compared with
parents who received their diagnosis after birth [5].
Recent studies specifically addressing congenital heart
disease have had conflicting data in prenatally diagnosed
parents. Some showed increased anxiety and grief, while
others demonstrated a decreased sense of responsibility for
their child’s disease compared with those who had a postnatal
diagnosis [6,7]. A prospective pilot study directly comparing
stress in parents with prenatal and postnatal diagnosis of
CHD found no difference at the time of diagnosis, but
reported higher stress levels in parents with a prenatal
diagnosis 6 months after birth [8]. This study, however, was
not adequately able to adjust for differences in disease
severity.
The impact of prenatal diagnosis of CHD on parental
anxiety certainly requires further exploration, especially given
continued expansion in collaborative prenatal care services
and the reported role of maternal anxiety as a risk factor for
adverse obstetric, fetal, and neonatal outcomes [9]. The
factors which may influence or modify levels of anxiety in
parents with a prenatal diagnosis require further delineation.
We performed a contemporary comparison of psychological
stress in parents who learn that their child has complex
congenital heart disease by prenatal versus postnatal diagno-
sis. We also examined the mediating effect of other factors,
including parent gender, on parental distress.
Address for correspondence: Nelangi M. Pinto, MD, MS, Division of
Pediatric Cardiology, University of Utah, 81 N. Mario Capecchi Drive,
Salt Lake City, UT 84113, USA. Tel: +1 801 213 7606. E-mail:
Nelangi.pinto@hsc.utah.edu
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3. Materials and methods
We performed a prospective cohort study of parents receiving
a diagnosis of complex congenital heart disease in their fetus
prenatally (Group 1) or in their infant postnatally (Group 2) at
our institution. Only diagnoses that would require surgery
prior to newborn (530 d) discharge were included. Patients
who had a diagnosis of an isolated coarctation or an isolated
patent ductus arteriosus were excluded. Group 1 parents were
enrolled at the time of prenatal diagnosis. Postnatal parents
were enrolled within 3 d of receiving a diagnosis and prior to
any surgical intervention.
Data were collected on the specific anatomic diagnosis,
demographics (parent age and gender, child’s gender, child’s
gestational age at birth), and surgical intervention. Cardiac
diagnosis was obtained by reviewing fetal echocardiogram
reports and confirmed by postnatal echocardiograms, mag-
netic resonance imaging, and/or cardiac catheterization. In
Group 1, additional information was collected on initial
diagnosis given, gestational age at diagnosis, total number of
fetal echocardiograms, and initial fetal physician involved.
The primary outcome of the study was the global
psychological stress score. This was assessed using the
Basic Symptom Inventory (BSI), a validated, self-adminis-
tered questionnaire. The BSI was first described in 1975 [10],
and since then has been validated and used to assess global
symptoms of psychological distress as well as nine dimen-
sions of symptoms [11]. This instrument was used by Brosig
et al. in their prospective pilot study comparing parental stress
in pre- and postnatally diagnosed CHD. It is designed to take
participants only 15 min to fill out. Given its simplicity,
validity, and reliability, we chose to use this same instrument
to measure parental stress in this study. In addition to global
stress, we also analyzed depression and anxiety scores as
secondary outcomes.
Parents self-administered the BSI at the following time
points for Group 1: prenatal diagnosis, at birth and at 4–9
month follow-up and for Group 2: postnatal diagnosis (birth)
and 4–9 month follow up. Questionnaires administered after
birth were administered as close to birth as possible and prior
to surgical intervention.
Statistical analysis
Raw scores for anxiety, depression, and global psychological
distress were calculated for each survey. Scores were
compared between prenatal and postnatally diagnosed parents
at diagnosis (at prenatal diagnosis for Group 1 and at birth for
Group 2), at birth for both groups and at 4–9 month follow-up.
Scores were compared using a mixed effects regression model
that adjusted for parent age, gender, gestational age at birth
(for surveys at birth and follow up), and disease severity as
measured by RACHS-1 category. We also performed add-
itional analyses that were stratified on parent gender.
We also examined predictors of higher domain scores
within Groups 1 and 2. For Group 1 scores, initial fetal
physician seen and gestational age at diagnosis were included
in the models.
The study was approved by the institutional review board
of the University of Utah and Primary Children’s Hospital and
consent was obtained at enrollment.
Results
The BSI was completed by 105 families (Group 1, n ¼ 60 and
Group 2, n ¼ 45) at enrollment from March 2008 to June
2012. Subsequent follow up and distribution by gender are
depicted in Figure 1. There was no significant difference
between Groups 1 and 2 with regard to severity of heart defect
(RACHS-1 category 4–6 45% versus 43%, respectively),
average age of parents (mothers 28.2 versus 27.6 years,
fathers 29.9 versus 29.2 years), or completion of final survey
rates (mothers 37% versus 33%, fathers 37% versus 39%,
respectively). However, Group 1 infants were born at a lower
average gestational age than Group 2 infants (37.7 versus
39.0, p50.001). The raw scores for each domain in each
sequential survey are presented in Table 1. Overall the
unadjusted scores improved (were lower) at each subsequent
survey with the exception of the depression raw score in the
2nd survey of Group 1.
Within each group, the predictors independently associated
with each domain score on mixed effects regression can be
seen in Table 2. In both groups, anxiety and depression scores
improved with each subsequent survey even on adjusted
analysis. In Group 1, mothers scored higher in all domains
then fathers. However, this gender difference was not seen in
Group 2. In Group 1, higher gestational age at diagnosis, or
later diagnosis, was also associated with higher anxiety and
global scores.
Adjusted mean scores in each domain compared for
individual surveys by diagnosis group can be seen in
Figure 2. As depicted, adjusted anxiety and global scores
were lower for Group 1 when compared with Group 2 at
diagnosis (BSI at diagnosis for Group 1 versus BSI at birth for
Group 2) effect size À0.38 (p50.01) and À0.25 (p50.04),
respectively, and at birth (BSI at birth for both) effect size
À0.62 (p50.01) and À0.47 (p50.02), respectively. However,
the scores were no longer different for BSI at follow-up. There
were also no significant differences at any time for the
depression domain.
When stratified by parent gender, Group 1 fathers had
lower adjusted mean scores for anxiety and global stress
compared with Group 2 at diagnosis and birth (Figure 3).
Group 1 mothers were not significantly different in any
domain score compared with Group 2 at diagnosis, but did
have lower adjusted mean anxiety scores and trended towards
lower global stress scores at the time of birth.
Discussion
We found in families delivering a child with a critical form of
CHD requiring surgery prior to discharge, prenatally
diagnosed parents had lower levels of global stress and
anxiety at the time of diagnosis and at birth compared with
parents of infants diagnosed postnatally. There was no
difference between the groups in later follow up. This differs
from several previous studies where parents of infants
postnatally diagnosed with CHD were found to have lower
stress compared with parents where a prenatal diagnosis was
made.
There may be several reasons why our findings differed
from previous reports. First, previous studies were done in an
earlier era [7,8,12]. Improvements in prenatal support and
2 N. M. Pinto et al. J Matern Fetal Neonatal Med, Early Online: 1–7
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4. multidisciplinary services since these studies may have led to
decreased stress in families receiving a prenatal diagnosis.
Most prenatal diagnosis centers now include multiple spe-
cialists with varying expertise including nurse coordinators,
social workers and sometimes even psychologists. During the
time of our study, we had a nurse coordinator intimately
involved in the care and counseling of prenatal families. For
the last 2 years of our study, we also had the additional benefit
of a social worker participating as part of our team.
A recent contemporary publication, however, did find that
timing of diagnosis had no impact on stress in families [13].
Decreased stress in prenatally diagnosed parents in our study
may stem from the inclusion of a larger number of families
than these previous reports. More importantly, we limited our
investigation to families of infants affected by a heart defect
requiring intervention prior to discharge, with further adjust-
ment for disease severity. Many previous studies were unable
to adjust for differences in severity of disease because of
limited power. Disease severity is a crucial confounder as
prenatally diagnosed heart defects are often more severe than
postnatally diagnosed defects [14,15].
Our study also found that the timing of diagnosis seemed
to have the biggest impact on fathers of infants affected by
significant CHD. In general, it has been found that prospect-
ive fathers score lower compared with mothers in assessments
of psychometric outcomes such as stress, anxiety and
depression when their fetus has been diagnosed with a
structural anomaly [16]. Bevilacqua et al. found that fathers of
infants with significant CHD had lower stress and depression
compared with mothers although they found no difference
related to timing of diagnosis in either gender [13].
Interestingly, after adjustment for other risk factors, while
we found mothers in the prenatal diagnosis group scored
significantly higher in measures of anxiety, depression and
global stress compared with fathers, this gender difference did
not exist in the postnatal group.
We also found that when stratified on gender, differences
in scores between prenatal and postnatal diagnosis groups
Fetal Demise
3
Comfort Care
5
Survey 2 (At birth)
N=35
(Mothers=35, Fathers=34)
Deaths
2
Survey 3 (Follow-up)
N=22
(Mothers=22, Fathers=22)
Survey 1
N=60
(Mothers=60, Fathers=59)
Survey 2 (At birth)
N=45
(Mothers=45, Fathers=38)
Deaths
4
Survey 3 (Follow-up)
N=15
(Mothers=15, Fathers=15)
Group 2Group 1
Figure 1. Study cohort from initial enrollment and participation in the Basic Symptom Inventory at different time points.
Table 1. Unadjusted brief symptom inventory scores by timing of diagnosis.
Anxiety Depression Global
Survey Mean ± SD Range Mean ± SD Range Mean ± SD Range
Group 1
At diagnosis 1.07 ± 0.7 0–4 0.76 ± 0.8 0–3.2 0.93 ± 0.7 0–3.6
At birth 0.89 ± 0.8 0–3.7 0.91 ± 0.9 0–4 0.77 ± 0.7 0–3.4
At f/u 0.51 ± 0.6 0–2 0.35 ± 0.5 0–1.6 0.44 ± 0.5 0–1.8
Group 2
At birth 1.46 ± 0.9 0–3.5 0.91 ± 0.9 0–4 1.21 ± 0.8 0–3.7
At f/u 0.71 ± 0.7 0–2.2 0.64 ± 0.9 0–3.4 0.68 ± 0.7 0–2.6
DOI: 10.3109/14767058.2015.1125465 Parental anxiety and timing of diagnosis in congenital heart disease 3
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5. were primarily attributable to fathers. This is similar to a
report investigating the impact of timing of diagnosis on
stress and parental decision making capabilities in 52 parents
(22 fathers). This study also found decreased anxiety in
fathers of prenatally diagnosed infants compared with
postnatally diagnosed counterparts despite the fact that
prenatal infants had more severe defects in their cohort
[17]. Thus, prenatal diagnosis may have the largest potential
Figure 2. Global, anxiety, and depression scores from the Basic Symptom Inventory. Graph displays mean difference in scores and the 95% confidence
interval after adjustment for parent age, gender, gestational age at birth (for surveys at birth and follow up), and disease severity as measured by
RACHS-1 category.
Table 2. Mixed effects model for factors associated with brief symptom inventory scores within each study group.
Anxiety Depression Global
Covariates Estimate p values Estimate p values Estimate p values
Group 1
Parent age À0.00 0.81 À0.01 0.38 À0.01 0.57
Gender (F versus M) 0.39 50.001 0.29 0.002 0.35 50.001
RACHS-1 0.09 0.06 0.12 0.01 0.10 0.01
GA at dx 0.04 0.01 0.03 0.10 0.04 0.02
Cardiologist 0.72 0.71 0.83
2 0.42 0.19 0.31
3 À0.09 0.16 0.02
4 À0.05 À0.16 À0.10
5 À0.01 0.16 0.06
At dx 0.62 50.001 0.42 50.001 0.53 50.001
At birth 0.26 0.03 0.12 0.34 0.20 0.09
At f/u* 0 0 0
Group 2
Parent age À0.04 0.07 À0.03 0.38 À0.04 0.06
Gender (F versus M) 0.07 0.73 0.14 0.06 0.10 0.57
RACHS-1 0.05 0.54 0.14 0.06 0.09 0.19
At birth 0.78 50.001 0.26 0.12 0.54 50.001
At f/u* 0 0 0
Estimate represents adjusted difference in score.
*Referent group.
4 N. M. Pinto et al. J Matern Fetal Neonatal Med, Early Online: 1–7
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6. Figure3.Global,anxietyanddepressionscoresfromtheBasicSymptomInventorystratifiedbyparentgender.Graphdisplaysmeandifferenceinscoresandthe95%confidenceintervalafteradjustmentfor
parentage,gender,gestationalageatbirth(forsurveysatbirthandfollowup),anddiseaseseverityasmeasuredbyRACHS-1category.
DOI: 10.3109/14767058.2015.1125465 Parental anxiety and timing of diagnosis in congenital heart disease 5
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7. for decreasing stress in fathers. The difference in results based
on the gender may be related to the fact that pregnancy in
general seems to be a time of heightened emotions for
mothers. There is a very high prevalence of anxiety in
pregnant women even in low-risk pregnancies (as high as
54%) [18]. Our study along with these previous findings
emphasizes the need for adequate behavioral services and
support for women carrying a fetus diagnosed with an
anomaly.
We were also able to identify important potentially
modifiable factors related to stress. Specifically, in those
diagnosed prenatally, diagnosis at a later gestational age was
associated with higher scores in all domains after adjusting
for risk factors including timing of survey. In longitudinal
studies of stress in pregnant women, the highest levels were
seen in the first and the third trimester [18]. Stress levels may
at baseline be higher closer to delivery. Additionally, prenatal
identification late in pregnancy may make parents feel less
prepared with less time to cope prior to birth. This finding
speaks to the importance of earlier identification on screening
scans and early referral for diagnosis and counseling.
Similar to previous studies, we did find that all psycho-
metric scores improved in both groups over time.
Additionally, differences between parents in the pre and
postnatal groups were alleviated in longer term follow up.
However, there should be some caution in interpreting these
results as there may be selection bias if those who have higher
stress tend not to complete follow up surveys. Additionally, as
found by Skreden et al., stress remains high in a fair
percentage of families of children with CHD over the long
term as would be expected [19].
Prenatal diagnosis certainly can increase stress at an
already stressful juncture in life; even referral for fetal
echocardiography without a confirmed diagnosis increases
stress [20]. Parental antenatal counseling has been shown to
decrease parental anxiety in those diagnosed with surgical
anomalies but counseling needs to be done with care [21].
While more information can help parents in preparation, it
may in some instances increase anxiety [22]. The use of
screening tools specific for prenatal time period may be
helpful [23]. Additionally, as we and others have shown, the
primary psychometric targets may be anxiety and stress more
than depression. Specific psychological services and behav-
ioral therapy are being studied in a randomized control trial
for routine pregnancies [24]. It is likely that such services
would be extremely beneficial in situations where the
pregnancy is impacted by a complex congenital defect.
Conclusion
Prenatal diagnosis may not be any more stressful than
diagnosis after birth as previously suggested. Yet, intervening
to alleviate this stress as much as possible remains an
important treatment goal. Our study suggests that there are
important factors such as gestational age, parent gender, and
severity to consider in these efforts. Regardless of timing of
diagnosis, having a child affected by a complex congenital
heart defect is a stressor on families [25]. There is an
increasing body of literature on the impact of maternal mental
well-being on their fetal/infants’ health [9]. Targeting
modifiable risk factors, identifying those at risk, and
providing adequate services to address the psychosocial
dynamic of these diagnoses are crucial to providing optimal
care and outcomes for these families and their children.
Declaration of interest
The authors report that they have no conflicts of interest.
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