Advances in the medical and surgical treatment of patients with congenital heart disease (CHD) have resulted in improved survival, and more children survive to adulthood 1. Recently, the number of adolescents and adults with CHD has increased rapidly, and in the nearer future, it will exceed that in the children group 2.
Guidelines have been established about how to deal with CHD in adolescents and adulthood. Mental health is highly identified as an important factor in these guidelines, as patients with CHD have to face particular challenges and concerns beyond their cardiac conditions, such as psychosocial issues, emotional and behavioral problems, educational delays, sexuality, and pregnancy 3. Moreover, an altered body image such as an operation scar or a dysmorphic appearance might cause additional psychosocial problems 4. Moreover, previous studies of children and adolescents with CHD reported a significantly poorer quality of life than reference peers on five domains: motor functioning, cognitive functioning, autonomy, social functioning, and positive emotional functioning 5. Therefore, guidelines for the care of these patients advocate the treatment of psychosocial difficulties including depression, anxiety, and social limitations. Accordingly, the success of medical, surgical, or interventional treatment is no longer measured only by survival or cardiac function variables, but rather by the global physical capacity or even the quality of life 6.
Previous studies measuring different dimensions of behavioral and emotional problems in adolescents and adults with CHD showed contradicting results 7. Some studies showed that the frequency of depression and anxiety disorders was about 30–40% in young adults with CHD 8–10; however, other studies reported no significant difference in the psychological functioning, the social functioning, and depression in young adults with CHD compared with healthy peers 11,12. The divergent findings between these studies might be explained by the diversity of the instruments used, the patient selection, and different healthcare programs 13.
Aim of the study
The aim of this study was to assess the prevalence of depression and anxiety in adolescents with CHD and to identify the predictors related to these disorders.
Participants and methods
Design of the study
This is a cross-sectional case–control study that was conducted in compliance with the guidelines of the Research and Ethics committee of the Institute of Psychiatry. The research protocol was approved by the Research and Ethics committee of the Ain Shams University. All participants gave informed consent before the procedure.
Selection of participants
The study was conducted in outpatient clinics of the Pediatric Cardiology Department, Ain Shams University Hospitals, in the period from November 2013 to April 2014. The study included 60 adolescents with structural CHD, as confirmed by echocardiogram, cardiac catheterization, or surgery, and aged between 12 and 18 years. Both sexes were included.
The control group included 30 apparently healthy adolescents. Participants were randomly selected from relatives of the patient group and workers in Ain Shams University Hospitals. Control adolescents were age-matched and sex-matched.
The study protocol was designed in accordance with the Code of Ethics of the World Medical Association (Declaration of Helsinki) for experiments involving humans. Caregivers were informed about the nature of the research and the confidentiality of the information obtained. It was stated that participation in the study is voluntary and the participants have the freedom to withdraw at any time. Also, they were informed that in case they refuse enrollment in the study, it will not affect the service they obtained.
All participants were evaluated as follows:
- The designed questionnaire: It was used for obtaining participants’ demographic data such as age, sex, and the education level, together with the medical history of all CHD patients. Medical records of all CHD patients were reviewed to collect information about the cardiac condition, such as the age of onset of symptoms, the diagnosis of CHD, the number of congenital defects, previous cardiac catheterization, and previous cardiac surgery. Consistent with published classification schema, cardiac defects were categorized as simple, of moderate complexity, or of great 14. The functional status classification system of the New York Heart Association (NYHA) was slightly modified to evaluate the impact of shortness of breath and chest pain with the following four grades: (I) patients with cardiac disease but without resulting limitations of physical activity; (II) patients with cardiac disease resulting in slight limitation of physical activity, and they are comfortable at rest; (III) patients with cardiac disease resulting in marked limitation of physical activity; they are comfortable at rest, but less than ordinary physical activity causes fatigue, palpitation, dyspnea, or anginal pain; and (IV) patients with cardiac disease resulting in an inability to carry out any physical activity without discomfort; symptoms of cardiac insufficiency, or of the anginal syndrome may be present even at rest 15.
- Psychiatric assessment: The Children’ Depression Inventory (CDI) and the Revised Children Manifest Anxiety Scale (RCMAS) were used to assess current symptoms of depression and anxiety; however, they are not sufficient to diagnose mood or anxiety disorders. Therefore, the Mini International Neuropsychiatric Interview for Children and Adolescents (MINI-KID) was used to evaluate the diagnostic criteria for depression and anxiety disorders in the participants who had scores above cutoff points on CDI and RCMAS.
- Children’s Depression Inventory (CDI): It is a self-report instrument that assesses the presence and the severity of depressive symptoms in children aged between 7 and 18 years 16. There are 27 items on the CDI; each item contains a three-choice response format (0, 1, or 2) reflecting the increasing severity of disturbance. Examinees are asked to select responses on the basis of their mood and feelings over the past 2 weeks. Total scores range from 0 to 54. Scores are reported on five subscales (Anhedonia, Ineffectiveness, Interpersonal problems, Negative mood, and Negative self-esteem) and are summed to interpret a total depression score. A score above 19 suggests clinically significant depression. The assessment takes 10–15 min to complete. The Arabic version was used for the study 17.
- The Revised Children’s Manifest Anxiety Scale (RCMAS): It is a 37-item, self-report instrument designed to assess the level and the nature of anxiety in children and adolescents aged between 6 and 19 years 18. The total anxiety score is computed on the basis of 28 items, which are divided into three anxiety subscales: physiological anxiety (10 items about somatic manifestations of anxiety such as sleep difficulties, nausea, and fatigue), worry/oversensitivity (11 items measuring obsessive concerns about a variety of things, most of which are typically vague and ill-defined, as well as fears about being hurt or emotionally isolated), and social concerns/concentration (seven items measuring distracting thoughts and fears that have a social or interpersonal nature). The remaining nine items constitute the Lie subscale. A cutoff point of 19 is used to identify children experiencing clinically significant levels of anxiety. A high score on the physiological anxiety scale suggests that the youth has certain kinds of physiological responses that are typically experienced during anxiety. A high score on the worry/oversensitivity scale may suggest that the youth internalizes much of the anxiety and may thus become overburdened with trying to relieve the anxiety. Finally, a high score on the social concerns/concentration subscale suggests that they youth my feel some anxiety that they are unable to live up to the expectations of other significant individuals in their lives 18. The scale was translated into Arabic with good back-translation.
- The Mini International Neuropsychiatric Interview for Children and Adolescents (MINI-KID): It was developed to provide a structured interview for DSM IV and ICD-10 childhood and adolescent disorders that could be administered relatively quickly (∼25 min). The interview covers 21 psychiatric disorders including mood, anxiety, substance use, tic, disruptive behavior, eating disorders, and suicidality 19. It was designed for administration to children from the age of 6 years to adolescence (up to 17 years, 11 months). The Arabic version was used 20.
Participants who met the diagnostic criteria for a psychiatric disorder were provided with psychiatric referral information and/or the coordination of subsequent psychiatric treatment.
The data were statistically analyzed using the Statistical Package for Social Sciences (SPSS) software version 17 (SPSS Inc., Chicago, Illinois, USA). Continuous variables were presented as mean±SD and categorical variables as absolute numbers (percentages). Categorical variables were compared by the χ2-test. Continuous normally distributed variables were compared by the independent-samples t-test. The logistic regression backward likelihood ratio technique was used to find out the significant independent predictors of depression and anxiety. A P value of 0.05 or less (two-tailed) was considered significant and a P value of 0.01 or less was considered highly significant.
Table 1 shows demographic and clinical characteristics of the patients. The mean age was 15.4±2.53 years, and 55% were male. Regarding the clinical characteristics of CHD, 41.6% had more than one congenital heart defects, while 28.3% had simple complexity, 53.3% had moderate complexity, and 18.3% had severe complexity. Regarding the NYHA functional class, 40% were asymptomatic (class I) and 60% were symptomatic (class II–IV). Twelve patients (20%) had more than one cardiac catheterization and 24 patients (40%) had a history of cardiac surgery.
The prevalence of depression in adolescents with CHD was 18.3%. The prevalence in the patient group was higher than that in the control group (18.3 vs. 3.3%, P=0.048). The mean score of depressive symptoms in the patient group on the CDI was 22.6±5.33, as shown in Table 2.
The prevalence of anxiety disorder in adolescents with CHD was 30%, which was higher than that in the control group (10%, P=0.03). According to the MINI-KID, 14 patients (77.8%) met the diagnostic criteria for generalized anxiety disorder, three patients (16.7%) met the criteria for social phobia, and one patient (5.6%) met the criteria for panic disorder. In addition, the mean score on the RCMAS of anxiety symptoms in the patient group was 22.1±2.78. On the RCMAS, two patients (11.1%) had higher scores on the physiological subscale, 14 patients (77.8%) scored higher on the worry/oversensitivity subscale, and two patients (11.1%) scored higher on the social/concentration subscale as shown in Table 2.
Comparison between depressed and nondepressed patients with CHD regarding their demographic and clinical characteristics showed that the level of education (being illiterate) and the NYHA functional class (II–IV) were significantly higher in depressed patients with CHD (P=0.049 and 0.02, respectively) as shown in Table 3.
On comparing anxious and nonanxious patients with CHD, univariate predictors of anxiety were the number of CHD defects (P=0.005), the CHD complexity (P=0.013), the NYHA functional class (P=0.057), and having more than one cardiac catheterization (P=0.008) as shown in Table 4.
A multivariate analysis was performed to detect independent predictors of depression and anxiety. The following emerged as significant predictors of depression: NYHA functional classes II–IV (symptomatic patients) and the education level (being illiterate). Independent predictors of anxiety were more than one CHD defect and more than one cardiac catheterization as shown in Table 5.
Around eight in 1000 children are born with CHD, with approximately two-third requiring treatment. As a result of advances in pediatric cardiology and cardiac surgery, 90% are now expected to survive into adulthood compared with 20% 50 years ago 2. Previous studies reported psychological distress in patients with CHD 8,21. It was found that even small shifts in the psychological status have a tremendous effect on the health-related quality of life 7. A Danish study was conducted to examine clinically verified psychiatric disorders among children and adolescents with CHD, it was reported that CHD patients with or without invasive therapeutic interventions are at an increased risk of psychiatric disorders; moreover, they seem to develop earlier in patients with CHD than in patients with diabetes mellitus or asthma 22. Children and adolescents with CHD experience anxiety and depression due to frequent rehospitalization, daily medication, and limitations imposed by the disease. In the majority of the cases, depression is under-recognized, either because health professionals consider it inevitable or because children are not able to seek help 23. Therefore, the aim of the present study was to evaluate the prevalence of anxiety and depression in adolescents with CHD, and to identify their predictors.
In the present study, 18.3% of adolescents with CHD met the diagnostic criteria for major depressive disorder and 30% of them met the diagnostic criteria for anxiety disorder. These results were in agreement with the study of Wang et al.13, who reported that 9% of the adolescents with heart disease (90% had CHD) were above the cutoff score for depression and 27% had anxiety. Also, in another study conducted on adolescents and adults with CHD 7, the prevalence of depression was 8.6% in the study sample, and depression was strongly correlated to the quality of life, especially to the psychosocial domains, and clearly exceeded the impact of exercise capacity (i.e. patients with severely diminished cardiac performance). Also, in a study by Spijkerboer et al.24, parents of children with CHD reported higher levels of behavioral and emotional problems compared with the control group. Kovacs et al.21, in their study on patients older than 17 years with CHD, found that 50% of the patients (29 out of 58 patients) met the diagnostic criteria for at least one lifetime mood or anxiety disorder (33% met the criteria for a lifetime mood disorder and 26% met the criteria for a lifetime anxiety disorder), of whom 39% had never received any psychiatric treatment. However, Eslami et al.25 reported that patients with CHD scored higher in anxiety and somatic symptoms than healthy control (P≤0.001), whereas there were no differences in depressive symptoms.
In the present study, 77.8% of the adolescents with CHD who had anxiety scored higher on the worry/oversensitivity subscale. This suggests that they tend to internalize much of the anxiety and may thus become overburdened with trying to relieve the anxiety. This was partially in agreement with previous studies on children with CHD aged between 6 and 17 years 26,27. Children with CHD had more medical fears and more physiological anxiety than normative samples. This disagreement in the subtype of anxiety could be due to some cultural differences in the psychological environment.
However, these results were in contrast to the results of Müller et al. 28. They found no differences in general anxiety levels of patients with CHD compared with their healthy peers; however, they reported more situational anxiety at the hospital. This discrepancy could be due to the different age groups (their study population was older than 14 years) and the utilization of different tools for the assessment of anxiety and depression (the State–Trait Anxiety Inventory and the Center for Epidemiologic Studies Depression Scale).
Results of this study showed that education level (being illiterate) and symptomatic CHD (functional NYHA classes II–IV) were predictors of depression. Moreover, the presence of more than one CHD defect and having more than one cardiac catheterization were significant predictors of anxiety. These results were in accordance to Cohen et al.29,30, who reported that adolescents with severe heart disease were more severely depressed and showed lower self-esteem than those with moderate or mild heart disease and age-matched healthy controls. Also, Norozi et al.31 revealed a statistically significant association between the degree of NYHA class and psychological symptoms in adolescents and adults with CHD. Areias et al.32 in their study conducted on adolescents and adults with CHD found that being female, having poor academic performance, poor social support, having a complex form of CHD, having moderate-to-severe residual lesions, having been subjected to surgery, and having physical limitations were associated with more feelings of anxiety and depression, more somatic complaints, and other signs of poorer psychosocial adjustment.
However, other studies did not find a significant relationship between adolescents’ emotional state and the severity of heart disease 13,33. Also, Eslami et al.25 showed no significant relation between CHD parameters and the presence of depression or anxiety symptoms. These divergent results could be due to using different measures or due to studying different age groups.
The present study did not show any significant differences between the presence of depression/anxiety and different age groups or patients’ sex; these results were in agreement with previous studies that showed no significant correlation between the age and the sex and the scores of depression and anxiety symptoms 13,21,24,34.
Results of the current study show that a large proportion of adolescents with clinically significant depression and anxiety are not recognized and consequently do not receive appropriate psychiatric treatment. There may be many reasons for this finding. Patients might be unaware that their symptoms are of clinical significance for which they might need psychiatric treatment. Also, patients might not be interested in psychiatric treatment or might not have the time or financial abilities to seek psychiatric help. Moreover, physicians working with adolescents with CHD might be unaware that their patients suffer from significant depression or anxiety.
First, the sample size was small. Second, this study was performed on patients receiving regular special surveillance for CHD in hospital-based facilities with programs of research; therefore, our sample may not represent all adolescents with CHD. Third, we had no control group with other chronic diseases; therefore, we did not assess whether the psychological situation of adolescents with CHD is similar to or different from those with other chronic diseases.
Despite the previous limitations, the advantage of the current study was the utilization of a structured clinical interview to improve the diagnostic accuracy, in contrast to previous studies, which depended only on the use of scales to assess the presence of depression and anxiety symptoms.
Depression and anxiety are quiet prevalent in adolescents with CHD and are related to low patient education, severity of cardiac illness, and multiple cardiac catheterizations. Awareness of these findings may help early recognition and the institution of appropriate psychiatric treatment, which can improve the adolescents’ quality of life.
The authors express their deepest gratitude and thanks to Professor Safeya Effat for her considerable help and support.
Conflicts of interest
There are no conflicts of interest.
1. Eskedal L, Hagemo PS, Eskild A, Aamodt G, Seiler KS, Thaulow E. Survival after surgery for congenital heart defects: does reduced early mortality predict improved long-term survival? Acta Paediatr 2005; 94:438–443.
2. Marelli AJ, Mackie AS, Ionescu-Ittu R, Rahme E, Pilote L. Congenital heart disease
in the general population: changing prevalence and age distribution. Circulation 2007; 115:163–172.
3. Fredriksen PM, Diseth TH, Thaulow E. Children and adolescents
with congenital heart disease
: assessment of behavioural and emotional problems. Eur Child Adolesc Psychiatry 2009; 18:292–300.
4. Kovacs AH, Sears SF, Saidi AS. Biopsychosocial experiences of adults with congenital heart disease
: review of the literature. Am Heart J 2005; 150:193–201.
5. Spijkerboer AW, Utens EM, De Koning WB, Bogers AJ, Helbing WA, Verhulst FC. Health-related Quality of Life in children and adolescents
after invasive treatment for congenital heart disease
. Qual Life Res 2006; 15:663–673.
6. Warnes CA, Williams RG, Bashore TM, Child JS, Connolly HM, Dearani JA, et al.. ACC/AHA 2008 Guidelines for the Management of Adults with Congenital Heart Disease
: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (writing committee to develop guidelines on the management of adults with congenital heart disease
). Circulation 2008; 118:e714–e833.
7. Müller J, Hess J, Hager A. Minor symptoms of depression
in patients with congenital heart disease
have a larger impact on quality of life than limited exercise capacity. Int J Cardiol 2012; 154:265–269.
8. Horner T, Liberthson R, Jellinek MS. Psychosocial profile of adults with complex congenital heart disease
. Mayo Clin Proc 2000; 75:31–36.
9. Popelová J, Slavík Z, Skovránek J. Are cyanosed adults with congenital cardiac malformations depressed? Cardiol Young 2001; 11:379–384.
10. Bromberg JI, Beasley PJ, D’Angelo EJ, Landzberg M, DeMaso DR. Depression
in adults with congenital heart disease
: a pilot study. Heart Lung 2003; 32:105–110.
11. Saliba Z, Butera G, Bonnet D, Bonhoeffer P, Villain E, Kachaner J, et al.. Quality of life and perceived health status in surviving adults with univentricular heart. Heart 2001; 86:69–73.
12. Ternestedt BM, Wall K, Oddsson H, Riesenfeld T, Groth I, Schollin J. Quality of life 20 and 30 years after surgery in patients operated on for tetralogy of Fallot and for atrial septal defect. Pediatr Cardiol 2001; 22:128–132.
13. Wang Q, Hay M, Clarke D, Menahem S. The prevalence and predictors of anxiety
with heart disease. J Pediatr 2012; 161:943–946.
14. Webb GD, Williams RG. 32nd Bethesda Conference: ‘care of the adult with congenital heart disease
’. J Am Coll Cardiol 2000; 37:1162–1165.
15. The Criteria Committee of the New York Heart Association. Nomenclature and criteria for diagnosis 1994:9th ed..Boston, Little, Brown: The Criteria Committee of the New York Heart Association.
16. Kovacs M. The Children’s Depression Inventory
(CDI). Psychopharmacol Bull 1985; 21:995–998.
17. Ghareeb AG. The Children’s Depression Inventory
(CDI) 1988.Cairo: Dar El Nahda El Arabia.
18. Reynolds BO, Richmond CR. Revised Children’s Manifest Anxiety
Scale. RCMAS manual 1985.Los Angeles: Western Psychological Services.
19. Sheehan DV, Lecrubier Y, Sheehan KH, Amorim P, Janavs J, Weiller E, et al.. The Mini-International Neuropsychiatric Interview (M.I.N.I.): the development and validation of a structured diagnostic psychiatric interview for DSM-IV and ICD-10. J Clin Psychiatry 1998; 59Suppl 2022–33.
20. Awaad M, Bishry Z, Hamed A, Ghanem M, Sheehan K, Sheehan D. Comparison of the Mini International Neuropsychiatric Interview for Children (MINI-KID) with the Schedule for Affective Disorders and Schizophrenia for School Aged Children – Present and Lifetime Version (K-SADS-PL): In an Egyptian sample presenting with Childhood Disorders. Ain Shams University Library 2002[Thesis].
21. Kovacs AH, Saidi AS, Kuhl EA, Sears SF, Silversides C, Harrison JL, et al.. Depression
in adult congenital heart disease
: predictors and prevalence. Int J Cardiol 2009; 137:158–164.
22. Olsen M, Sørensen HT, Hjortdal VE, Christensen TD, Pedersen L. Congenital heart defects and developmental and other psychiatric disorders: a Danish nationwide cohort study. Circulation 2011; 124:1706–1712.
23. Nousi D, Christou A. Factors affecting the quality of life in children with congenital heart disease
. Health Sci J 2010; 4:94–100.
24. Spijkerboer AW, Utens EM, Bogers AJ, Verhulst FC, Helbing WA. Long-term behavioural and emotional problems in four cardiac diagnostic groups of children and adolescents
after invasive treatment for congenital heart disease
. Int J Cardiol 2008; 125:66–73.
25. Eslami B, Sundin O, Macassa G, Khankeh HR, Soares JJ. Anxiety
, depressive and somatic symptoms in adults with congenital heart disease
. J Psychosom Res 2013; 74:49–56.
26. Gupta S, Giuffre RM, Crawford S, Waters J. Covert fears, anxiety
in congenital heart disease
. Cardiol Young 1998; 8:491–499.
27. Gupta S, Mitchell I, Giuffre RM, Crawford S. Covert fears and anxiety
in asthma and congenital heart disease
. Child Care Health Dev 2001; 27:335–348.
28. Müller J, Hess J, Hager A. General anxiety
and adults with congenital heart disease
is comparable with that in healthy controls. Int J Cardiol 2013; 165:142–145.
29. Cohen M, Mansoor D, Langut H, Lorber A. Quality of life, depressed mood, and self-esteem in adolescents
with heart disease. Psychosom Med 2007; 69:313–318.
30. Cohen M, Mansoor D, Gagin R, Lorber A. Perceived parenting style, self-esteem and psychological distress in adolescents
with heart disease. Psychol Health Med 2008; 13:381–388.
31. Norozi K, Zoege M, Buchhorn R, Wessel A, Geyer S. The influence of congenital heart disease
on psychological conditions in adolescents
and adults after corrective surgery. Congenit Heart Dis 2006; 1:282–288.
32. Areias ME, Pinto CI, Vieira PF, Teixeira F, Coelho R, Freitas I, et al.. Long term psychosocial outcomes of congenital heart disease
and young adults. Zhongguo Dang Dai Er Ke Za Zhi 2013; 15:810–816.
33. Cox D, Lewis G, Stuart G, Murphy K. A cross-sectional study of the prevalence of psychopathology in adults with congenital heart disease
. J Psychosom Res 2002; 52:65–68.
34. Eslami B, Sundin O, Macassa G, Reza Khankeh H, Soares JJ. Gender differences in health conditions and socio-economic status of adults with congenital heart disease
in a developing country. Cardiol Young 2013; 23:209–218.