Extensive research has documented neuro-developmental and psycho-social challenges among children and adolescents with CHD, prompting a scientific statement from the American Heart Association recommending periodic developmental surveillance, screening, evaluation, and re-evaluation [14]. The current study included 224 patients with CHD, aged 4–18 years with a mean ± standard deviation of 99.48 ± 43.37 months. They were 54.5% males (n = 122) and 45.5% females (n = 102). The PSC score implemented in this study revealed no cases with attention problems or externalizing defects. The only positive cases were found to have internalizing impairment (12.95%, n = 29). Interestingly, the PSC items answered by the patients revealed only 23 patients with internalizing deficit. Considering the answers of parents’ items in the PSC, 6 more patients were identified. The internalizing positive cases are more prone to develop anxiety or depressive disorders, positive cases were referred by the researcher to get psychological assessment and proper aid from a specialist. Consistent with the results of the present study, Latal et al [15] in their systematic review stated that psychological difficulties consisted predominantly of internalizing symptoms as retrieved from six studies, while three studies only observed significant externalizing symptoms.
Assessment of possible risk factors related to positive PSC cases showed that surgical interference, heart failure with prolonged treatment, presence of cyanosis were identified statistically significant (p < 0.001, p = 0.001, p < 0.001 respectively). While age and gender were not statistically proven as risk factors (p = 0.530, p = 0.906 respectively). Cyanosis was found to be the only significant independent predictor of developing internalizing deficit by multiple logistic regression modeling (p < 0.001). Comparable to the current study, Areias et al. [16], stated that patients submitted to surgery had higher scores in PSC, namely internalization subscale (p = 0.007), externalization subscale (p = 0.024), and attitude subscale (p = 0.011). Moreover, relatives of their patients referred more to internalization defects (p = 0.006) for the complex forms of CHD and those having physical limitations (p = 0.027). Special emphasis on cyanosis was observed by Latal et al [15] in their systematic review; they found that rates of psychiatric disorders for children with surgically corrected transposition of great arteries and children with severe cyanotic defects ranged between 19 and 46%. In line with these findings, parents of children with cyanosis or reduced physical capacity reported psychological maladjustment especially following surgery as reported by Gupta et al [17] and Bjornstad et al. [18]
Identification of the child with significantly impaired QOL may have the greatest clinical potential for improving outcomes of children with heart disease. Results of HR-QOL score in the current study showed that the majority of studied patients had excellent quality of life as regards the four domains: physical, emotional, social, and school functioning (83.93%, 61.61%, 85.27%, and 65.18% respectively). The worse physical functioning reported was fair in 4.02% (n = 9), the worse emotional functioning was fair in 4.46% (n = 10), social functioning was fair in 2.68% (n = 6). The domain most affected was the school performance being poor in 4.46% (n = 10), and fair in 9.82% (n = 22) of the studied patients. These results are in accordance with many other researches in literature. Krol et al [19] stated that although significantly lower than the scores of healthy children on several domains, yet mean health-related quality of life scores of children with CHD remained relatively good. Moons et al [9] stated that 78.1% were clustered as having a good QOL, 20.1% had moderate QOL, and only 1.8% (n = 11) had poor QOL within a study of 612 adults with CHD. Many studies confirmed the poorer psychological well-being and QOL in CHD patients compared to healthy controls [20, 21]. Uzark et al [22] concluded that comparison of the mean subscale scores for physical, emotional, social, and school QOL revealed that children with CHD were most different than norms especially school functioning scores (p < 0.001). Even though, they added that the majority of these children had a good QOL as perceived by themselves and their parents. The strong religious believes together with the familial consolidation in the setting of the current study helped children and their families to accept and better deal with their suffering as they conceived the disease as “the will of God”. This statement was recorded repeatedly by many families while performing the study. This explains why despite of the low to moderate socio-economic class of the studied population, yet the prevalence of psycho-social impairment and hence the quality of life were found comparable to that recorded in well - developed centers.
The results of the present study showed that measures of internal consistency were high for the two metrics used in the study. The total Cronbach’s alpha of PSC (α = 0.846) which refers to it as a good tool of psychosocial assessment among the studied population. While, the total Cronbach’s alpha for the HR-QOL was estimated to be (α = 0.900) and this refers to an excellent tool of assessment of quality of life among the studied cases. The PSC have been widely used for research and have demonstrated sound psychometric properties. In a huge study by Gardner et al [4] that involved 18.045 patients within a primary care setting, PSC demonstrated good overall internal consistency (α = 0.89) very comparable to the results of the current study. The PSC was also found to have good sensitivity and specificity when compared to similar well validated measures [23]. The HR-QOL tool developed by WHO is more widely valid and reliable psychometric analysis with excellent internal consistency in the study by DeSmedt et al. [24], Cronbach α was found to be 0.92, again very close to the current results. This was proved to be a better tool of analysis if compared to a specific cardiac disease related QOL score developed by Leiden University Medical Centre which reported a questionable reliability. (α = 0.63) [19].
The PSC and HR-QOL scores proved to be effective and valuable instruments for the evaluation of patients with CHD given the increasing number of survivors. Recommendation from previous results suggests to combine both scores for screening children with psycho-social deficit and further detect those with poor quality of life. Applying one tool of screening would probably be less effective in detecting CHD patients in need for psychological support. This goes in parallel with Struemph et al [25] who concluded that PSC as a psychosocial screening tool could not detect impairments in executive, behavioral, social, cognitive and emotional adjustment. These domains are well covered by WHO – HR/QOL tool. So, the combined use of PSC and HR-QOL tools provides better insight into knowledge gaps or unrecognized psychosocial needs.
This study was not without limitations. First, although the size of the studied cases was large enough to produce sufficient power analysis, larger groups could contribute to generalizability of study results. Second, a multicenter collaboration is a means of increasing the number of participants and further expanding knowledge and understanding of the emotional and psychosocial aspect of heart diseases. The third weakness of the study is the potential sample bias because studied patients were recruited from cardiology outpatient clinic and this cohort could not represent the whole CHD population. It is unknown whether patients not receiving specialized care have better or poorer psycho-social functioning. Finally, patient functional status was quantified by subjective rather than objective assessment in view of the age of the studied group whether too young to understand and decide scores, or adolescent age which is basically a time of intense psychological changes and instability even among healthy individuals. So, results of these scores should be interpreted with lot of caution of misleading.
