Surgery-related posttraumatic stress disorder in ...

2 downloads 2850 Views 227KB Size Report
for the PDS symptom clusters. We additionally assessed the presence of partial PTSD in parents 6 months after sur- gery as originally suggested by Hickling and.

Surgery-related posttraumatic stress disorder in parents of children undergoing cardiopulmonary bypass surgery: A prospective cohort study Susanne Helfricht, PhD; Beatrice Latal, MD, MPH; Joachim E. Fischer, MD, MSc; Maren Tomaske, MD; Markus A. Landolt, PhD

Objective: We aimed at evaluating surgery-related posttraumatic stress disorder (PTSD) in parents of children undergoing cardiopulmonary bypass surgery. Risk factors for parental PTSD symptoms were explored. Design: A prospective cohort study was performed assessing PTSD symptoms immediately after discharge and 6 months after cardiopulmonary bypass surgery. Setting: Recruitment took place at a tertiary pediatric medical center in Switzerland. Subjects: German-speaking parents of children with congenital heart defects aged between 0 and 16 yrs undergoing cardiopulmonary bypass surgery were eligible (n ⴝ 228). After child discharge, 135 mothers and 98 fathers of 139 children (response rate 61.0%) participated. Six months after surgery, 121 mothers and 92 fathers of 128 children (response rate, 56.1%) took part in the study. Interventions: Assessment via a screening instrument and self-rating scale, and extraction of data from charts. Measurements and Main Results: The Posttraumatic Diagnostic Scale was applied to estimate self-reported symptoms of PTSD. Following discharge, 16.4% of mothers and 13.3% of fa-


thers met diagnostic criteria for acute PTSD. Another 15.7% of mothers and 13.3% of fathers experienced significant symptoms of posttraumatic stress. Six months after surgery, PTSD rates were 14.9% and 9.5%, respectively. Mothers experienced more severe symptoms of PTSD, but gender differences were not detected with regard to the frequency of PTSD at either time. After controlling for socioeconomic status and child preoperative morbidity, PTSD symptom severity after discharge remained the only significant predictor of PTSD severity at 6 months. Pre-, peri-, and postoperative factors did not predict parental PTSD. Conclusions: Parents of children undergoing cardiopulmonary bypass surgery are at increased risk for intermediate and longterm psychological malfunctioning. Acute symptoms of PTSD in parents shortly after discharge of their child are a major risk factor for the development of chronic PTSD. Clinicians need to identify parents at risk at an early stage to provide them with systematic support. (Pediatr Crit Care Med 2008; 9:217–223) KEY WORDS: congenital heart defects; heart-lung machine; intensive care; parents; posttraumatic stress disorders; prospective studies

ongenital heart disease (CHD) is one of the most prevalent chronic pediatric illnesses, with severity ranging from small septal defects to complex malformations. Prevalence rates of CHD range from 3 to 12 per 1,000 live births depending on methodologic approach, that is, mode of confirmation of diagnosis (1–3). More than one-third of these children are

born with critical CHD, denoting heart defects that acutely threaten life and necessitate palliative or corrective surgery in early life (4). Other children will need surgical interventions later in childhood. Parents of children with CHD are at an increased risk of experiencing distress (5), anxiety and depression (6), or a reduced quality of life (7). In addition to coping with the diagnosis (8), possibly

From University Children’s Hospital Zurich, Child Development Center (SH, BL), Division of Pediatric Cardiology (MT), and Department of Psychosomatics and Psychiatry (MAL), Zurich, Switzerland; and Heidelberg University, Mannheim Medical Faculty, Institute of Public Health, Social- and Preventive Medicine, Mannheim, Germany (JEF). Supported, in part, by the Foundation Mercator, Switzerland. The authors have not disclosed any potential conflicts of interest.

Address requests for reprints to: Markus A. Landolt, University Children’s Hospital Zurich, Department of Psychosomatics and Psychiatry, Steinwiesstr. 75, Postfach, 8032 Zurich, Switzerland. E-mail: [email protected] Copyright © 2008 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies

Pediatr Crit Care Med 2008 Vol. 9, No. 2

DOI: 10.1097/PCC.0b013e318166eec3

with an associated genetic disorder, or with other illness-related concerns (9), parents may need to adjust to developmental delay (10) or behavioral difficulties in their child (11). Heart surgery imposes further strain to the lives of affected parents. Fears of perioperative risks and postsurgical complications but also hopes for an improved quality of life for the child may be experienced. Accordingly, elevated psychological distress and maladaptive coping have been observed in parents before cardiac surgery (12, 13). Postoperative intensive care treatment may impose further distress. For instance, parents are confronted with the sight of their mechanically ventilated child (14) and alterations to their parental role (15). To date, surgery-related posttraumatic stress disorder (PTSD) in parents of children with CHD following cardiopulmo217

nary bypass (CPB) surgery has not been evaluated. However, previous research has demonstrated increased rates of illness-related PTSD in parents of children with chronic or life-threatening illness (16, 17). We conducted a prospective cohort study assessing symptoms of PTSD in parents of children with CHD. We hypothesized that we would find higher rates of PTSD in parents following discharge of their child from the hospital and 6 months after CPB surgery compared with the lifetime prevalence in the general community (18, 19). Emphasis was placed on including both parents of the operated children, as response rates in fathers of critically ill children have previously been much lower than for mothers (20). To this end, we aimed at contrasting paternal levels of surgeryrelated PTSD symptoms with PTSD symptoms in mothers. As the experience of a potentially traumatizing event does not inevitably lead to the development of PTSD

(18), the final objective of this study was to explore risk factors relating to pre-, peri-, and postoperative data of the child for surgery-related PTSD in parents.

MATERIALS AND METHODS Participants. Mothers and fathers of children who had undergone CPB surgery were consecutively recruited during a 24-month study period at the University Children’s Hospital Zurich if they spoke German fluently and their child was aged between 0 and 16 yrs by the time of surgery. Figure 1 summarizes participation rates for the study period. A total of 135 mothers (mean age 34.6 yrs, SD 5.5 yrs) and 98 fathers (mean age 37.5 yrs, SD 6.7 yrs) of 139 children (response rate 61.0%) agreed to participate after discharge of their child from hospital. Six months after surgery, 122 mothers (mean age 34.5 yrs, SD 5.3 yrs) and 92 fathers (mean age 36.3, SD 6.7) of 128 children (response rate 56.1%) participated. Throughout the study period, 58% of participating parents claimed social services provided by the hospital, which are mainly funded

by the healthcare providers. The services assisted with health insurance, helped organize financial support, arranged affordable accommodation for parents who lived farther than commuting distance from the hospital, facilitated temporary assistance for housekeeping and the care of siblings at home, and organized community social services for the time after discharge. Measures. Surgery-related PTSD was assessed by the German version of the Posttraumatic Diagnostic Scale (PDS), a widely used screening instrument in clinical and research settings (21, 22). The PDS is a 17-item selfreport instrument that rates symptoms of PTSD according to their frequency on a 4-point Likert scale from 0 (not at all) to 3 (almost always). A symptom is counted as present if a score of 1 or more is given. PTSD is diagnosed according to criteria of the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV) (23), if a traumatic event had been experienced, and if at least one symptom of re-experiencing, three symptoms of avoidance, and two symptoms of hyperarousal had been present for ⱖ1 month.

Total number of patients operated during the study period aged 0-16 (n=312)

Total number of patient families excluded from the study (n= 84) Child deceased before inclusion (n=15) No fluent command of German (n=66) Participation in another study (n=1) Foster familiy needed (n=2) Total number of patient families eligible for inclusion (n=228)

Questionnaires sensed as too private (n=7)

Demanding/ difficult family situation (n=9) No reasons given (n=47)


Questionnaires too difficult to understand (n=7)

Too strained but willing to participate at a later assessment (n=19)

Child deceased (n=2) Non-responders of Acute Follow Up willing to participate at 6 Months-Follow Up (n=19)

Drop outs (n=28) child in intensive care (n=1); difficult family situation (n=3); lost to follow up (n=1); no reasons given (n= 22)



Total number of patients with participating parents at the Acute Follow Up Assessment after discharge (n=139; 61.0%)

Total number of patients with participating parents at the 6-Months Follow Up Assessment (n=128; 56.1%)

Figure 1. Flow of participation of patient families.


Pediatr Crit Care Med 2008 Vol. 9, No. 2

One or more areas of life must be compromised by these symptoms. Good psychometric properties of the original version of the PDS, that is, a high internal consistency (␣ ⫽ 0.92) and a good test-retest reliability for overall PDS symptom severity (␬ ⫽ 0.74), have been reported (22). Diagnostic agreement with the PTSD module of the Structured Clinical Interview for DSM-IV was good with a sensitivity of 0.89 and a specificity of 0.75 (22). A comparison of the PDS with the current gold standard for the assessment of PTSD, the Clinician Administered PTSD Scale, also demonstrated a high sensitivity of 0.94 (24). Psychometric

evaluation of the German version of the PDS demonstrated a high internal consistency (␣ ⫽ 0.94), excellent sensitivity (1.00), and moderate specificity (0.64) (25). The PDS has previously been applied to assess illnessrelated PTSD in parents of children with severe illness (16, 26). For the current study we observed Cronbach’s ␣ between 0.84 and 0.88 for the PDS symptom clusters. We additionally assessed the presence of partial PTSD in parents 6 months after surgery as originally suggested by Hickling and Blanchard (27). According to this definition, partial PTSD is diagnosed if at least one symp-

tom of re-experiencing is experienced and either three symptoms of avoidance or two symptoms of hyperarousal are present. Symptoms must have persisted for ⱖ1 month and impaired at least one area of daily functioning. Socioeconomic status (SES) was estimated by a single continual score subsuming maternal education and paternal occupation ranging from 2 to 12 points (28). Based on this score three social classes were derived: lower class (2–5), middle class (6 – 8), and upper class (9 –12). This procedure has been shown to yield a valid estimate for SES in the Swiss community (29).

Table 1. Patient characteristics for parental participation at discharge and at 6 months At Discharge Responders Number Age at surgery, yrs Mean (SD) Median Gender, females (%) Socioeconomic status, n (%) Lower class Middle class Upper class Unknown Maternal nationality, Swiss, n (%) Paternal nationality, Swiss, n (%) Unknown Identified genetic defect, n (%) Trisomy 21 22q11 deletion Other Previous CPB surgery, n (%) Preoperative morbidity score Mean (SD) Median Heart defect with indication for CPB surgery, n (%) ASD/VSD AVSD Other acyanotic defects Complex single ventricle D-TGA Other cyanotic defects Surgical risk score, RACHS-1 (%) 1–2 3–4 5–6 Extracorporeal circuit time, mins Mean (SD) Median PICU stay, days Mean (SD) Median Overall hospitalization, days Mean (SD) Median Need for reoperation within 30 days of surgery, n (%) Social services involved, n (%) Need for medication 6 mos after surgery, n (%) Yes No Unknown



At 6 Months pa


Responders 128

3.2 (4.8) 0.5 68 (48.9)

2.4 (3.9) 0.4 61 (45.9)


7 (5.0) 67 (48.2) 63 (45.3) 2 (1.4) 120 (83.3) 114 (82.0)

8 (6.0) 39 (29.3) 18 (13.5) 68 (51.1) 77 (57.9) 76 (57.1) 5 (3.8)


13 (9.4) 5 (3.6) 13 (9.4) 28 (20.1)

15 (11.3) 3 (2.3) 11 (8.3) 21 (15.8)

0.7 (1.0) 0.0

0.8 (1.2) 0.0

36 (25.9) 16 (11.5) 25 (18.0) 13 (9.4) 14 (10.1) 35 (25.2)

39 (29.3) 15 (11.3) 20 (15.0) 10 (7.5) 14 (10.5) 35 (26.3)

63 (45.3) 70 (50.4) 6 (4.3)

59 (44.4) 69 (51.9) 5 (3.8)

153.3 (63.0) 148.0

143.4 (82.4) 128.0


d d

Nonresponders 144

3.1 (4.7) 0.6 61 (47.7)

2.6 (4.1) 0.4 68 (47.2)


6 (4.7) 66 (51.6) 53 (41.4) 3 (2.3) 110 (85.9) 107 (83.6)

9 (6.3) 40 (27.8) 28 (19.4) 67 (46.5) 87 (60.4) 83 (57.6) 4 (2.8)


12 (9.4) 5 (3.9) 12 (9.4) 28 (21.9)

16 (11.1) 3 (2.3) 12 (9.0) 21 (14.6)

0.7 (1.00) 0.0

0.8 (1.1) 0.0

33 (25.8) 16 (12.5) 28 (21.9) 9 (7.0) 11 (8.6) 31 (24.2

42 (29.2) 15 (10.4) 17 (11.8) 14 (9.7) 17 (11.8) 39 (27.1)

55 (43.0) 71 (55.5) 2 (1.6)

67 (46.5) 68 (47.2) 9 (6.3)

151.3 (63.9) 147.0

145.9 (80.6) 130.5

7.5 (20.5) 5.0

7.5 (10.9) 5.0

20.5 (22.0) 15.0 6 (4.7) 59 (46.1)

27.1 (34.8) 15.0 12 (8.3) 58 (40.3)

48 (37.5) 60 (46.9) 20 (15.6)

32 (22.2) 54 (38.0) 58 (40.3)



41 (29.5) 64 (46.0) 36 (24.4)

40 (30.1) 50 (37.6) 43 (32.3)







27.3 (37.8) 15.0 12 (9.0) 59 (44.4)




20.8 (18.5) 15.0 6 (4.3) 58 (41.7)




9.0 (22.2) 5.0




6.1 (5.9) 5.0



NS, not significant; CPB, cardiopulmonary bypass; ASD/VSD, atrial and ventricular septal defects; AVSD, atrioventricular septal defects; D-TGA, d-transposition of the great arteries; PICU, pediatric intensive care unit; RACHS, Risk Adjustment for Congenital Heart Surgery. a Group differences at discharge; b group differences at 6 months; c p ⬍ .05; d p ⬍ .001.

Pediatr Crit Care Med 2008 Vol. 9, No. 2



dent variable. Independent predictor variables were selected with regard to statistical considerations. To avoid effects of multicollinearity, only variables with low intercorrelations were selected.

RESULTS Sample Description. Descriptive patient characteristics with regard to participation at discharge and at 6 months are presented in Table 1. There were no differences between responding and nonresponding parents after discharge with regard to child age, child gender, or pre-, peri-, or postoperative variables. Children of nonresponding parents were from a lower socioeconomic background and more often had mothers and fathers of a non-Swiss nationality. Considering the 6-month follow-up, there were no differences between responders and nonresponders for child age, child gender, socioeconomic status, or pre-, peri-, or postoperative data. Again, significant differences were observed for parental nationality. Prevalence and Course of SurgeryRelated PTSD Symptoms. One mother provided incomplete questionnaire data at discharge and was omitted from further analyses. At discharge, 16.4% of 134 mothers and 13.3% of 98 fathers met full diagnostic criteria for PTSD at 49.1 days (SD ⫽ 17.9) and 45.0 days (SD ⫽ 15.1) after CPB surgery, respectively. Another 15.7% of mothers and 13.3% of fathers met diagnostic criteria for PTSD except the time criterion 18.3 days (SD ⫽ 5.5) and 18.0 days (SD ⫽ 5.5) after surgery, respectively. Depending on the postoperative course, some children had been discharged within ⬍1 month of surgery. For

parents of these children, the diagnostic time constraint of persisting symptoms of 1-month duration did not apply. Nevertheless, they experienced significant posttraumatic stress as they met the remaining diagnostic criteria, that is, reexperiencing, avoidance and numbing of affect, excessive hyperarousal, and impairment in areas of life. At the 6-month follow-up, 121 mothers responded 6.1 months (SD ⫽ 1.3) and 92 fathers responded 6.1 months (SD ⫽ 1.3) after child surgery. Of these participants, 14.9% of mothers and 9.5% of fathers experienced surgery-related PTSD, while another 22.3% and 20.7% met criteria for partial PTSD (27), respectively. Figure 2 gives an overview of the frequency of occurrence of diagnoses and diagnostic symptom clusters at both times of assessment. PTSD symptom severity was observed to decline significantly in parents who took part at both times of assessments. In mothers, the mean PDS total score decreased (t ⫽ 7.11, p ⬍ .01) from 11.4 (SD ⫽ 8.9) to 6.6 (SD ⫽ 6.0), and in fathers (t ⫽ 6.49, p ⬍ .01) mean PDS scores decreased from 7.8 (SD ⫽ 6.4) to 3.7 (SD ⫽ 4.2). Comparison Between Mothers and Fathers. At discharge, the incidence of PTSD and the occurrence of significant posttraumatic stress did not significantly differ between mothers and fathers (␹2 ⫽ 0.71, p ⫽ .40). Also, 6 months after surgery, no differences in the relative frequencies of PTSD (␹2 ⫽ 1.83, p ⫽ .18) or partial PTSD were observed (␹2 ⫽ 0.17, p ⫽ .69). Nevertheless, symptom severity was significantly higher in mothers than in fathers at discharge (t ⫽ 3.85, p ⬍ .01) and at 6 months

90 80

Mothers at discharge (n=134)

70 Frequency (%)

Pre-, peri-, and postoperative data were prospectively extracted from medical records for responders and nonresponders. We only obtained data of nonresponders who had provided permission for scientific use of medical data (n ⫽ 133). A preoperative morbidity score was calculated based on the presence of preoperative cyanosis, heart insufficiency, mechanical ventilation, and the need for a stomach tube. The scores ranged from 0 to 4. Surgical risk was classified according to the Risk Adjustment for Congenital Heart Surgery (RACHS-1) risk stratification (30). Postoperative status 6 months after surgery was operationalized by means of the current cardiac need for medication yielding a binomial variable, that is, current medication vs. no current medication. Data about current cardiac medication 6 months after surgery were incomplete as follow-up visits were commonly conducted by the referring cardiologist. Procedure. The study was approved by the local research ethics committee. Parents were approached by a study coordinator after their child had been admitted to a general pediatric ward following intensive care. Parents were given written information about study purpose and procedures. If parents provided informed consent, they received a standardized questionnaire and a postpaid envelope. Six months after their child’s surgery, parents received a second questionnaire. A letter of reminder was sent in case of no reply within 6 wks. No incentives were offered for participation. Statistical Analyses. Data were analyzed using the statistical package SPSS, release 14.0 (SPSS, Chicago, IL). All statistical tests were performed with two-sided tests with a predefined significance level of p ⬍ .05. Nonparametric tests were used to test differences between responders and nonresponders in case of categorical data or data with inhomogeneous error variances. Changes in PDS total scores over time were assessed by means of paired Student’s t-tests. Gender differences for binomial data and continual data were assessed by chi-square and Student’s t-tests, respectively. The PDS total scores showed a skewed distribution for mothers (z ⫽ 1.83, p ⫽ .003) and fathers (z ⫽ 1.74; p ⫽ .005) at the 6-month follow-up. Square root transformation resulted in normally distributed data for mothers (z ⫽ 0.79; p ⬍ .559) and an improved distribution in data of fathers (z ⫽ 1.64; p ⫽ .010). Transformed scores of fathers revealed a peak at 0, while the remaining data were well distributed across the spectrum of severity scores. In the face of potential dependencies between observations from the same family, we considered data of mothers and fathers in separate analyses. Associations between medical data, parental characteristics, and PTSD symptom severity at discharge and at 6 months were assessed by means of bivariate Pearson’s correlations. Two multiple regression models were calculated, with transformed PDS total scores at 6 months in mothers and fathers serving as the depen-

Fathers at discharge (n=98)


Mothers at 6 Months (n=121)


Fathers at 6 Months (n=92)

40 30 20

1 1

10 0 PTSD

Reexperiencing Avoidance/ Hyperarousal Numbing

Partial PTSD

1: Except time criterion

Figure 2. Frequency distribution of posttraumatic stress disorder (PTSD) and diagnostic symptom clusters at discharge and at 6-month follow-up.

Pediatr Crit Care Med 2008 Vol. 9, No. 2

(t ⫽ 3.41, p ⬍ .01). We did not observe a significant interaction for changes in symptom severity over time and gender for participants who took part in both assessments (F ⫽ 0.99, p ⫽ .32). Predictors of Surgery-Related PTSD Symptom Severity. Table 2 summarizes the correlations of child demographics, medical factors, and parental characteristics with parents’ PTSD symptom severity following discharge and 6 months after surgery before ␣-error amendment. Demographic characteristics of the child did not significantly relate to symptom severity in parents at either assessment. Surgical history and preoperative medical status of the child were not associated with parental PTSD severity except for a few variables. Yet these correlations did not remain significant after ␣-error amendment by applying Bonferroni correction. Neither did perioperative vari-

ables relate to parental symptom severity. Considering postoperative factors, length of stay in intensive care and overall duration of hospitalization significantly related to PTSD severity 6 months after surgery only in fathers. In mothers, use of social services provided by the hospital and being of a non-Swiss nationality were associated with more severe PTSD symptoms after discharge. In fathers, being of a non-Swiss nationality was also related to symptom severity after discharge. PTSD severity after discharge correlated with PTSD severity at 6 month in both mothers and fathers. Maternal and paternal symptom severity assessed after discharge was also significantly correlated. Moreover, maternal PTSD severity after discharge was associated with paternal symptom severity at 6 months. Tables 3 and 4 give an overview of the variables of the regression models pre-

Table 2. Pearson correlations between demographics; pre-, peri-, and postoperative child variables; parental characteristics; and parental scores of the Posttraumatic Diagnostic Scale (PDS) PDS Transformed Total Scores Mothers

Demographic data Child age Gender (0 ⫽ males, 1 ⫽ females) Socioeconomic status (2–12) Preoperative status Previous cardiopulmonary bypass surgery (0 ⫽ no, 1 ⫽ yes) Trisomy 21 (0 ⫽ no, 1 ⫽ yes) Other identified genetic disorders (0 ⫽ no, 1 ⫽ yes) Cyanosis (0 ⫽ no, 1 ⫽ yes) Heart insufficiency (0 ⫽ no, 1 ⫽ yes) Stomach tube (0 ⫽ no, 1 ⫽ yes) Mechanical ventilation (0 ⫽ no, 1 ⫽ yes) Overall morbidity score Perioperative data Surgical risk (RACHS-1, 1-6) Extracorporeal circuit duration Postoperative course Days in intensive care Reoperation within 30 days (0 ⫽ no, 1 ⫽ yes) Days in hospital Social services involved (0 ⫽ no, 1 ⫽ yes) Current medication at 6 mos (0 ⫽ no, 1 ⫽ yes) Parental characteristics Age Nationality (0 ⫽ Swiss, 1 ⫽ non-Swiss) Living with partner (0 ⫽ no, 1 ⫽ yes) PDS scores in mothers after discharge PDS scores in fathers after discharge

At Discharge

At 6 Mos

At Discharge

At 6 Mos

–.02 –.08 –.15

–.07 –.02 –.02

.14 .20 .09

–.12 .20 –.11





–.19a .02

–.19a .05

–.05 –.09

–.13 .04

.01 –.06 .10 .18a .06

.07 .01 .20a .14 .15

–.03 –.06 –.04 –.01 –.06

.08 .10 .15 –.09 .11

.03 –.02

.14 .06

–.14 –.03

–.01 .11

.15 .05

.07 –.08

.04 .04

.28b –.09

.10 .26b

.15 .23a

–.03 .06

.33b .22a





–.02 .23b –.07 — .41c

–.13 .16 –.09 .64c .14

.03 .27b –.06 .41c —

–.09 .11 .07 .32b .35b

RACHS, Risk Adjustment for Congenital Heart Surgery. a p ⬍ .05; b p ⬍ .01; c p ⬍ .001.

Pediatr Crit Care Med 2008 Vol. 9, No. 2


dicting PTSD symptom severity at 6 months in mothers and fathers, respectively. The statistically significant models account for 41% of the variance in the transformed PDS total scores of mothers and 22% of the variance in fathers. After we controlled for SES and preoperative child morbidity, maternal PTSD symptom severity after discharge significantly predicted symptom severity at 6 months in mothers (p ⬍ .001). Neither surgical risk nor duration of intensive care significantly contributed to the prediction of maternal PTSD severity at 6 months. In fathers, paternal PTSD symptom severity after discharge (p ⬍ .01) was also the only significant predictor in the model after we controlled for SES and preoperative child morbidity.

DISCUSSION The present study is, to our knowledge, the first to prospectively assess surgery-related PTSD in parents of children with CHD undergoing CPB surgery. The invasiveness of the surgical procedure, associated operative risks, and the stay in intensive care can be experienced as threatening by affected parents. Accordingly, we observed increased rates of acute surgery-related PTSD in 16.4% of mothers and in 13.3% of fathers following discharge. Another 15.7% of the mothers and 13.3% of the fathers experienced significant posttraumatic stress symptoms; however, sufficient time had not elapsed since surgery to meet the diagnostic time criterion for PTSD in these parents. Our observations compare with previously reported rates of current PTSD in parents of children with life-threatening illness (16, 31). Compared with lifetime prevalence of PTSD in the Swiss population (18), parents of children with CHD are clearly at an increased risk to suffer from acute surgery-related PTSD. Six months after heart surgery, rates of PTSD diagnoses had declined to 14.9% in mothers and 9.5% in fathers. Nevertheless, these rates remained significantly elevated compared with a Swiss community sample (18). Another considerable proportion of parents presented with partial PTSD (27). Although they did not fully meet diagnostic criteria, they nevertheless experienced a significant degree of PTSD symptoms, compromising their everyday life. Only a few studies have included a substantial proportion of fathers of critically ill children, and many research find221

Table 3. Multiple regression analysis predicting symptom severity of posttraumatic stress disorder (PTSD) at 6 months in mothers

Control variables Socioeconomic status Preoperative morbidity score Predictor variables Surgical risk (RACHS-1) Days in intensive care Maternal PTSD symptom severity after discharge


Significance ␤

Partial r

.03 –.01

.67 .89

.04 –.01

.07 .01 .64

.40 .94 ⬍.001

.09 .01 .62

RACHS, Risk Adjustment for Congenital Heart Surgery. F(5,97) ⫽ 13.52, p ⬍ .001, R2 ⫽ .41; adjusted R ⫽ .38.


Table 4. Multiple regression analysis predicting symptom severity of posttraumatic stress disorder (PTSD) at 6 months in fathers ␤a Control variables Socioeconomic status Preoperative morbidity score Predictor variables Surgical risk (RACHS-1) Days in intensive care Paternal PTSD symptom severity after discharge

Significance ␤

Partial r

–.11 .08

.33 .58

–.11 .06

–.09 .15 .40

.49 .25 ⬍.01

–.08 .13 .39

RACHS, Risk Adjustment for Congenital Heart Surgery. a F(5,66) ⫽ 3.81, p ⬍ .01, R2 ⫽ .22; adjusted R ⫽ .17.

ings are solely based on maternal reports (6, 9). The current study included almost as many affected fathers as mothers. Thus, we were able to compare prevalence and course of surgery-related PTSD with regard to parental role. In contrast to the general PTSD literature, which shows a higher vulnerability in females (32), we did not observe a significant gender difference for rates of PTSD. This highlights the equally high risk for psychological maladjustment in mothers and fathers in relation to child surgery. Nevertheless, self-reported symptom severity was consistently higher in mothers. Mothers may be more prone to admit to full-scale emotional disturbance caused by the surgery, while fathers’ answers may be motivated by social desirability. Although we observed PTSD in a remarkable proportion of mothers and fathers, child surgery did not inevitably lead to PTSD. Correlations between symptom severity and pre- or perioperative child data did not reveal any significant association. In contrast, being of a non-Swiss nationality was related to symptom severity after discharge in mothers as well as in fathers. This may be explained in terms of the availability of fewer resources. Furthermore, mothers 222

who used the social services provided by the hospital presented with more severe symptoms of acute PTSD. The association may indicate that mothers who are more resilient are less likely to seek support during hospitalization of their child. Another interesting finding relates to the observed association between symptom severity in fathers 6 months after surgery and duration of hospitalization. No such relationship was observed for mothers. It is conceivable that many fathers experience extra strain by attempting to meet job demands as well familial responsibilities. The longer the hospitalization continues, the more it may affect hardiness in fathers. Interestingly, maternal symptom severity at discharge correlated with paternal symptom severity at 6 months. Finally, we attempted to identify risk factors for parental PTSD symptom severity 6 months after surgery. In both parents, PTSD severity after discharge was the only relevant predictor. This is in line with findings of a recent prospective study, which demonstrated that parents who suffered from acute stress disorder 2 days after admittance of their child to a pediatric intensive care unit were more likely to experience PTSD 2 months later (17). Interestingly, neither the surgical risk nor indexes of the postoperative

course, which may objectively characterize the traumatic experience in relation to surgery, predicted symptom severity. This is in contrast to previous findings demonstrating that characteristics of a trauma, such as length or severity, increase the risk of developing PTSD (32). Our findings suggest that in the context of child surgery, objective criteria, such as duration of surgery or surgical risk, may be less consequential for parental adjustment than the subjective experience of the surgery-related circumstances. The latter may be determined by emotional as well as cognitive processes, that is, appraisal, previous experiences, social support, or a biological predisposition. Limitations. Several potential limitations of our study warrant consideration. The response rates per patient ranged from 56% to 61%; thus, we do not have any information regarding parental PTSD for a large proportion of children. Generally, response rates of parents of chronically ill children have been moderate, particularly for follow-up data (33, 34). This may be caused in part by the demanding illness of the child and associated exhaustion in parents who do not want any additional strain. Furthermore, nonparticipation may be a consequence of PTSD-related avoidance symptoms. Thus, the observed incidence rates may underestimate the true prevalence of surgery-related PTSD in this population. As a low SES has frequently been shown to be a risk factor for PTSD (32), the observed underrepresentation of parents of children from a lower socioeconomic background and a non-Swiss nationality may have further contributed to a bias in findings. Also, the implementation of the study may have served as an unsystematic intervention and, thus, biased findings. Our study did not use a control group design, and we did not assess parental characteristics before surgery. Hence, the observed incidence of PTSD may in some cases reflect preexisting psychological maladjustment. Finally, diagnostic criteria were checked by means of self-reports and not by structured clinical interviews. Nevertheless, good diagnostic agreement between the PDS and clinical interviews for PTSD has been reported (22). Despite a number of limitations, the current study is the first to prospectively assess prevalence and course of surgeryrelated PTSD symptoms in a relatively large number of mothers and fathers of children with CHD undergoing CPB surgery. Well-controlled multivariate analyPediatr Crit Care Med 2008 Vol. 9, No. 2

ses provided preliminary insights into what predicts PTSD symptoms 6 months after surgery in this population.

CONCLUSIONS The current study results disclose various implications for future research. Considering risk factors for surgeryrelated PTSD severity 6 months after surgery, the only identified predictor was severity of PTSD symptoms after discharge. This highlights the relevance of interpersonal rather than surgery-specific variables in explaining the observed variance in parental symptoms. Future research may prospectively assess characteristics in parents before surgery, such as personality, coping behavior, threat appraisal, previous critical life events, or social support, in order to relate them to long-term adjustment in parents, including symptoms of surgeryrelated PTSD. Another research implication arises when we consider our findings in the light of a previous study. Visconti and colleagues (35) demonstrated that parenting stress experienced when a child with CHD was 1 yr old predicted behavioral difficulties in the child 3 yrs later. Hence, it may be of interest to evaluate whether surgery-related PTSD in parents also affects the long-term development in these children. Finally, the awareness of potential consequences of CPB surgery on parental well-being may be incorporated into the consultancy custom of medical personal dealing with this population.

ACKNOWLEDGMENTS We thank all participating parents and children and specifically Manuela Kaufmann-Zahno and Ingrid Beck for their reliable and continuous support as study coordinators.

REFERENCES 1. Botto LD, Correa A, Erickson JD: Racial and temporal variations in the prevalence of heart defects. Pediatrics 2001; 107:E32 2. Schoetzau A, van Santen F, Sauer U, et al: Cardiovascular abnormalities in Bavaria 1984 –1991. Z Kardiol 1997; 86:496 –504 3. Pradat P: Epidemiology of major congenital heart defects in Sweden, 1981–1986. J Epidemiol Community Health 1992; 46: 211–215 4. Ferencz C, Rubin JD, McCarter RJ, et al: Congenital heart disease: Prevalence at livebirth. The Baltimore-Washington Infant Study. Am J Epidemiol 1985; 121:31–36

Pediatr Crit Care Med 2008 Vol. 9, No. 2

5. Uzark K, Jones K: Parenting stress and children with heart disease. J Pediatr Health Care 2003; 17:163–168 6. Rona RJ, Smeeton NC, Beech R, et al: Anxiety and depression in mothers related to severe malformation of the heart of the child and foetus. Acta Paediatr 1998; 87:201–205 7. Lawoko S, Soares JJ: Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual Life Res 2003; 12:655– 666 8. Tak YR, McCubbin M: Family stress, perceived social support and coping following the diagnosis of a child’s congenital heart disease. J Adv Nurs 2002; 39:190 –198 9. van Horn M, DeMaso DR, Gonzalez-Heydrich J, et al: Illness-related concerns of mothers of children with congenital heart disease. J Am Acad Child Adolesc Psychiatry 2001; 40: 847– 854 10. Dittrich H, Bührer C, Grimmer I, et al: Neurodevelopment at one year of age in infants with congenital heart disease. Heart 2003; 89:436 – 441 11. Hovels-Gurich HH, Konrad K, Wiesner M, et al: Long term behavioural outcome after neonatal arterial switch operation for transposition of the great arteries. Arch Dis Child 2002; 87:506 –510 12. Wray J, Sensky T: Psychological functioning in parents of children undergoing elective cardiac surgery. Cardiol Young 2004; 14:131–139 13. Utens EM, Versluis-Den Bieman HJ, Verhulst FC, et al: Psychological distress and styles of coping in parents of children awaiting elective cardiac surgery. Cardiol Young 2000; 10:239 –244 14. Haines C, Perger C, Nagy S: A comparison of the stressors experienced by parents of intubated and non-intubated children. J Adv Nurs 1995; 21:350 –355 15. Miles M, Carter M, Riddle I, et al: The pediatric intensive care unit environment as a source of stress for parents. Matern Child Nurs J 1989; 18:199 –206 16. Landolt MA, Vollrath M, Laimbacher J, et al: Prospective study of posttraumatic stress disorder in parents of children with newly diagnosed type 1 diabetes. J Am Acad Child Adolesc Psychiatry 2005; 44:682– 689 17. Balluffi A, Kassam-Adams N, Kazak A, et al: Traumatic stress in parents of children admitted to the pediatric intensive care unit. Pediatr Crit Care Med 2004; 5:547–553 18. Hepp U, Gamma A, Milos G, et al: Prevalence of exposure to potentially traumatic events and PTSD: The Zurich Cohort Study. Eur Arch Psychiatry Clin Neurosci 2006; 256:151–158 19. Perkonnig A, Kessler RC, Storz S, et al: Traumatic events and post-traumatic stress disorder in the community: Prevalence, risk factors and comorbidity. Acta Psychiatr Scand 2000; 101:46 –59 20. Board R, Ryan-Wenger N: State of the science on parental stress and family functioning in pediatric intensive care units. Am J Crit Care 2000; 9:106 –122; quiz 123–124

21. Steil R, Ehlers A: Posttraumatische Diagnostikskala (PDS). Jena, Germany, Universität Jena, Psychologisches Institut, 2000 22. Foa EB, Cashman L, Jaycox L, et al: The validation of a self-report measure of posttraumatic stress disorder: The Posttraumatic Diagnostic Scale. Psychol Assess 1997; 9:445– 451 23. American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders. Fourth Edition. Washington, DC, American Psychiatric Association, 1994 24. Griffin MG, Uhlmansiek MH, Resick PA, et al: Comparison of the posttraumatic stress disorder scale versus the clinician-administered posttraumatic stress disorder scale in domestic violence survivors. J Trauma Stress 2004; 17:497–503 25. Griesel D, Wessa M, Flor H: Psychometric qualities of the German version of the Posttraumatic Diagnostic Scale (PTDS). Psychol Assess 2006; 18:262–268 26. Boyer BA, Hitelman JS, Knolls ML, et al: Posttraumatic stress and family functioning in pediatric spinal cord injuries: Moderation or mediation? Am J Fam Ther 2002; 31: 23–37 27. Hickling EJ, Blanchard EB: Post-traumatic stress disorder and motor vehicle accidents. J Anxiety Disord 1992; 6:283–304 28. Largo RH, Pfister D, Molinari L, et al: Significance of prenatal, perinatal and postnatal factors in the development of AGA preterm infants at five to seven years. Dev Med Child Neurol 1989; 31:440 – 456 29. Landolt MA, Vollrath M, Ribi K, et al: Incidence and associations of parental and child posttraumatic stress symptoms in pediatric patients. J Child Psychol Psychiatry 2003; 44:1199 –1207 30. Jenkins KJ, Gauvreau K, Newburger JW, et al: Consensus-based method for risk adjustment for surgery for congenital heart disease. J Thorac Cardiovasc Surg 2002; 123: 110 –118 31. Kean EM, Kelsay K, Wamboldt F, et al: Posttraumatic stress in adolescents with asthma and their parents. J Am Acad Child Adolesc Psychiatry 2006; 45:78 – 86 32. Brewin CR, Andrews B, Valentine JD: Metaanalysis of risk factors for posttraumatic stress disorder in trauma-exposed adults. J Consult Clin Psychol 2000; 68:748 –766 33. Board R, Ryan-Wenger N: Long-term effects of pediatric intensive care unit hospitalization on families with young children. Heart Lung 2002; 31:53– 66 34. Manne SL, Du Hamel K, Gallelli K, et al: Posttraumatic stress disorder among mothers of pediatric cancer survivors: Diagnosis, comorbidity, and utility of the PTSD checklist as a screening instrument. J Pediatr Psychol 1998; 23:357–366 35. Visconti KJ, Saudino KJ, Rappaport LA, et al: Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries. J Dev Behav Pediatr 2002; 23:314 –321


Suggest Documents