Correspondence: Samuel Menahem, Emeritus Head, Paediatric Cardiology Unit, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria 3168, Australia. Email: email@example.com
Congenital heart disease is common yet poorly understood in childhood. We reviewed the understanding of older children and adolescents with the commonest congenital heart defect, namely, a small ventricular septal defect (VSD), through a questionnaire and/or their drawings of their abnormality.
As part of a wider study, older children and adolescents with a small VSD were asked to draw a picture of their cardiac defect in addition to completing a questionnaire.
Twelve of an initial cohort of 20 participants, who were between the ages of 8 and 20 years, completed a drawing of their malformation. Further drawings were obtained from five additional participants recruited from a private practice over the next few years. There were almost equal number of male and female participants overall. Nearly all participants had a limited understanding of their cardiac abnormality as reflected by their drawings. Nevertheless none reported restricting their physical activity.
While most older children and adolescents did not seem to have a clear understanding of their small VSD, it did not appear to affect their daily activity. The participants placed a greater reliance on the information provided by their parents rather than their doctor, emphasizing the importance of informing both the parents and the patient.
Congenital heart disease is a significant cause of morbidity and mortality in children. Ventricular septal defect (VSD) is the most common congenital cardiac abnormality found in children with prevalence of about 3.6/1000 live births, though Carlgren's earlier population study indicated the incidence to be closer to 60%, a finding subsequently confirmed at 61% by Meberg et al. Most VSDs are small, and do not require surgical intervention or, under the current guidelines, the need for antibiotic prophylaxis for dental extractions etc. The child and adolescent should be able to lead a normal life.
The impact on the child of a congenital heart disorder differs greatly from that produced by heart disease acquired later in childhood. Feelings of low self-esteem have been reported in patients with congenital heart disease. Green and Levitt used self-drawing as a measure of the child's projection of him- or herself and found that children with congenital heart disease tended to draw smaller self-figures than did normal children, and postulated that the constricted physical self-concepts of the children resulted from their “disability.”
The likely psychological outcome in the child/adolescent seems to be independent of the severity of the cardiac lesion as evidenced by cardiac non-disease.[8, 9] Even mild congenital heart disease may lead to an increased sense of patient vulnerability, which was attributed more to uncertainty of outcome rather than to severity of the disease. Similarly, a 25-year Mayo clinic follow up of patients with various types of congenital heart disease revealed that many had evidence of psychological stress, which did not correlate with the severity of the cardiac defect. The degree of impairment of physical activity in children with congenital cardiac disease is not always related to the severity of the organic lesion. A disparity may exist between what the doctor judges the child able to perform and his actual performance. Results of a study on self-efficacy and physical activity in adolescents with trivial, mild or moderate congenital cardiac malformations have confirmed that “beliefs in self-efficacy,” rather than severity of the disease, were the most influential factors in determining whether or not adolescents will engage in sports or other physical activities. It is important that a child/adolescent understands and perceives his/her heart problem correctly, as an accurate understanding of a persistent problem at any age is associated with less distress, less confusion, improved satisfaction with medical care, better compliance with treatment and an improved emotional state.[13-15] Similar concerns were raised in a study done on adult patients with congenital heart disease.
Drawings have been widely used in both adult and pediatric health research[18, 19] and are considered one way to obtain further information as to how older children and adolescents understand their cardiac anomaly. This study aimed to determine how a cohort of children above the age of 7 years understood the nature of their congenital heart abnormality through a questionnaire and/or a drawing of their cardiac anomaly, and whether that understanding influenced their day-to-day activities.
Children and adolescents seen in the outpatient pediatric cardiology clinics at two tertiary teaching hospitals or the private practices of the participating cardiologists over a period of 5 months (the limited time available for the then student [S.W.L.] undertaking the study) were enrolled following informed consent and approval from the hospital ethics committees. The inclusion criteria were those patients diagnosed with a small, hemodynamically insignificant VSD presenting for the first time or seen on follow up.
In addition to their clinical findings, investigations which then included a chest X-ray, electrocardiogram and cross-sectional echocardiography, were collated. The significance of the defect and its management were discussed with the parents and subject. The clinician completed a prescribed form summarizing the clinical findings and investigational data of the patient and completed a checklist of statements regarding the defect that were made to the parents and the child. An earlier paper reported on the parental perceptions of a small ventricular septal defect.
Children above the age of 7 who were enrolled in the study were asked to fill in a questionnaire at the time of attendance wherever possible, or following their visit. The questionnaire was an attempt to assess the child's understanding of the information provided by the doctor especially as it related to whether any restrictions or precautions were advised, and if what the parents said had altered their understanding. Open-ended questions were used whenever possible. They were also asked to draw what they understood was wrong with their heart.
A further five participants, not part of the initial study group but seen in a private setting with small VSD and fulfilling the above criteria over the ensuing years, were asked to draw their heart abnormality. They were not required to complete a questionnaire, as they were not recruited in the same manner. However the results of their drawings are included to supplement the earlier limited sample size.
Of the 20 children above the age of 7 enrolled in the study, completed questionnaires were obtained from 12, despite repeated contact by mail or telephone. To that were later added the additional five participants who fulfilled the recruitment criteria. The majority had been seen previously and were recruited at the follow-up visit.
Clinical features of patients
The age of patients ranged between 7 and 20 years with an almost equal number of each sex. Ten had small perimembraneous defects while the other seven had small muscular defects with typical clinical findings. They were referred to the pediatric cardiologist almost equally by their family doctor or pediatrician.
Results from the questionnaires
The participants were asked if they understood why they came to see the cardiologist. All but one said yes. Although the majority of children felt they knew and understood what the doctor said, only five out of the 12 from the original sample attempted an explanation. These five belonged to the older age groups, that is, ages 12 years and above. The explanations varied from “I have a hole in my heart where the two chambers are,” to “He told me I am most likely to have this murmur forever.” One child mentioned that she was told everything was fine, which was the same as what her mother had told her. Another child who did not understand what she was told by the doctor, wrote, “I don't know what a murmur really is and where it is coming from.” A further one remarked, “I only understand whatever my mother told me about the problem.” Table 1 summarizes what the participants recalled as being told by their parents.
Table 1. Information that the participants who received the questionnaire stated was provided by the parents
(1) “I have a hole in my heart.”
(2) “I have a heart murmur and they explained what sorts of check-ups were required.”
(3) “I have to tell future doctors and dentists that I have a small hole in my heart.”
(4) “Everything is fine and I don't have to worry about anything to do with my heart.”
(5) “It will be fixed up if I have the medicine.”
(7) “If I have deep cuts I need antibiotics and if I'm feeling unusually unwell, overtired or dizzy, I have to see my doctor or call an ambulance.”
(8) “I'm not quite sure what my parents told me.”
The participants were asked if there was anything they could not do because of their heart problem especially with respect to sports and physical activities. All correctly answered no to both questions. As for precautions, few mentioned the need for antibiotics before dental work or surgery, which was the recommendation at the time of the study. One said she needed to lose weight. The rest thought that no precautions were needed. All were aware that they required follow up.
The participants were asked to draw a picture of what they thought was the problem with their heart. Figure 1 provides selected examples, some with additional written comments. The drawings reflect a limited understanding of their cardiac abnormality. A similar finding was also obtained from the additional five participants with small VSD who were also asked to draw their cardiac abnormality.
Nearly all of the drawings, whatever the age of the subject, failed to provide meaningful information of the site and size of the defect with also little awareness of the structure of a normal heart.
We found that most of the older children and adolescents did not have a clear understanding as evidenced by their answers as to the questions asked, as to what was wrong with them, whether the abnormality was first diagnosed at the time of attendance or had been previously diagnosed. That was despite the explanation of the cardiologists at the time of attendance or at previous consultations in those attending for follow up. The participants relied heavily on what they had been told by their parents rather than the doctor.
Children and adolescents have been reported as finding it easier to illustrate their medical condition, rather than writing about it, in addition to understanding the workings of their bodies.[21-23] Yet even those participants who drew a “hole” in their heart, had little concept as to its actual location or significance. Despite this finding, none restricted themselves in terms of physical activity, although fewer than half remembered the need for antibiotic prophylaxis for dental treatment, which was still being advised at the time of this study. A subsequent study of a larger cohort of adolescents with congenital heart disease also found that the participants had little knowledge of their cardiac abnormality despite many having had surgery. That was further evidenced in their drawings, which bore little resemblance to their cardiac abnormality, a finding also noted by Veldtman et al. The adolescents' poor understanding of their cardiac abnormality was reflected in a poorer quality of life. Wang et al., in their extensive study, showed that adolescents who had a better understanding of their cardiac abnormality as evidenced by the answers to their questionnaires, in general drew more accurate drawings of their abnormality.
Of interest in this study was the degree of importance participants placed on what their parents told them about their heart defect. The older children especially, but even the adolescents, often compared the doctor's advice to that of the parents attaching greater importance to what their parents had said. It goes without saying that parents need to have a clear understanding of the problem for them to impart the correct information to their offspring. On the other hand, parents have been known to “protect” their offspring from further anxiety by limiting what they tell their children about their cardiac abnormality. That, however, should not apply when the child has only a small hemodynamically insignificant VSD and may reflect the parent's lack of a clear understanding of their child's abnormality.
Information gathered from the parents revealed that many would like the cardiologist and doctors in general to spend more time with their child explaining in simple terms what a murmur is, what a VSD is and how it causes a murmur, the size and site of the VSD, etc. Speaking to the child/adolescent directly and not just expecting the parent to pass correct information on, information that they may have forgotten, may improve their understanding. Even children can define illness in terms of specific body organs, giving details of how internal functions break down and citing multiple physical causes. Speaking directly to the older child/adolescent may allow him or her to start forming accurate self-perceptions of their heart problem, rather than relying fully on what they have been told by their parents. We must move away from just talking with parents and examining their children, to talking directly with our patients. A current study looked at the positive impact of a CD-ROM for parents and children with common congenital heart abnormalities explaining graphically the nature of the abnormality and its effects. A previous study emphasized the importance of first describing the anatomy and function of a normal heart before describing the cardiac abnormality.
These results must be viewed in light of its limitations. The sample size was small. Nevertheless the majority of the 17 drawings (one submitted a blank sheet, Fig. 1a) displayed a limited understanding of the abnormality. The result is not surprising as it is questionable if even adults are able to draw a picture of their heart abnormality having been shown that many have little knowledge of the anatomy of their cardiac abnormality. It would have been helpful if at the time a control group of healthy children matched for age would have been able to draw a normal heart. Line drawings have routinely been used to help explain the cardiac abnormality when the patient is first seen; however that is when the patient first presents, often in infancy as many of the participants were initially diagnosed then. The considerable detail given to the parents at the time may not be passed on to the child/adolescent as he or she grows up and may need to be repeated at subsequent visits. Explaining the echocardiographic pictures during the consultation may help the older child/adolescent understand their heart defect. There is, however, the risk that by using color Doppler to show up a small defect may give an erroneous idea of it being of larger size as color “bleeds” beyond the margins of the defect.
These findings raise the question as to whether the pediatrician and family physicians can and should play a greater role in providing ongoing information to the parents and child/adolescent in their more frequent visits to them. Being away from the specialist and, at times, overwhelming tertiary centers and in the setting of the local clinic may allow a greater assimilation of the information provided to the patients and their family. Hopefully, that may result in an improved understanding of their cardiac abnormality even if it was insignificant. That assumes that the pediatrician and family physician are fully informed of the diagnosis, its implications and long-term outcome by the attending cardiologist.
Finally, it is also questionable if some of the younger children in the cohort were able to understand what was being asked of them. According to the Four Periods of Piaget's Theory of Cognitive Development, children from the age of 7–11 years are described as being in the concrete operational stage where they can master conservation problems and understand categorization but have difficulty in abstract thought. It is possible that, inadvertently, a few of the questions asked may have required abstract thought. However those views have been supplemented by contemporary cognitive developmental theory, which suggests children are capable of abstract thought earlier, perhaps from 6 years of age and that cognitive development is complete by age 10. Sex differences have not been addressed in this study and would be of interest as girls' cognitive development is generally somewhat advanced relative to boys during pre-adolescence. Despite the apparent limited knowledge and understanding of their insignificant cardiac abnormality, all the participants, both children and adolescents, understood that no physical limitations were necessary and that they needed to return for follow up. So, despite the concerns suggested in this paper, all had appreciated that the abnormality was of little consequence and that essentially they can lead a normal life.
The pediatric cardiologists at the Royal Children's Hospital and Monash Medical Centre provided patients for the study.