Psychosocial health and quality of life among children with cardiac diagnoses: agreement and discrepancies between parent and child reports

Abstract

Psychosocial health issues are common among children with cardiac diagnoses. Understanding parent and child perceptions is important because parents are the primary health information source. Significant discrepancies have been documented between parent/child quality-of-life data but have not been examined among psychosocial diagnostic instruments. This study examined agreement and discrepancies between parent and child reports of psychosocial health and quality of life in the paediatric cardiology population. Children (n=50, 6-14 years) with diagnoses of CHDs (n=38), arrhythmia (n=5), cardiomyopathy (n=4), or infectious disease affecting the heart (n=3) were enrolled, completing one or more outcome measures. Children and their parents completed self-reports and parent proxy reports of quality of life - Pediatric Quality of Life Inventory - and psychosocial health - Behavioral Assessment Scale for Children (Version 2). Patients also completed the Multidimensional Anxiety Scale for Children. Associations (Pearson's correlations, Intraclass Correlation Coefficients) and differences (Student's t-tests) between parent proxy reports and child self-reports were evaluated. Moderate parent-child correlations were found for physical (R=0.33, p=0.03), school (R=0.43, p<0.01), social (R=0.36, p=0.02), and overall psychosocial (R=0.43, p<0.01) quality of life. Parent-child reports of externalising behaviour problems, for example aggression, were strongly correlated (R=0.70, p<0.01). No significant parent-child associations were found for emotional quality of life (R=0.25, p=0.10), internalising problems (R=0.17, p=0.56), personal adjustment/adaptation skills (R=0.23, p=0.42), or anxiety (R=0.07, p=0.72). Our data suggest that clinicians caring for paediatric cardiac patients should assess both parent and child perspectives, particularly in relation to domains such as anxiety and emotional quality of life, which are more difficult to observe.

The mental health of adolescents and pre-adolescents living with inherited arrhythmia syndromes: a systematic review of the literature

“…Research reporting quality of life among adolescents and pre-adolescents with inherited arrhythmia syndromes is limited. Patient self-reported assessments of quality of life used a diverse array of assessment procedures (Short Form Health Survey; 19 Pediatric Quality-of-Life Inventory, 21 , 23 , 29 , 31 Pediatric Cardiac Quality of Life Instrument, 21 , 23 , 29 Child Health Questionnaire; 20 , 27 , 30 semi-structured interview 28 ) making comparison of results difficult. Of the nine identified studies, three were analyses from the same database of patients 21 …”

“…The limited data from these investigations suggest that quality of life may be lower among these patients, particularly in areas of physical function, bodily pain, and mental and emotional health 19 21 , 30 , 31 Physical function quality of life was affected by restriction of physical activity, being cautious or holding back in life activities and learning difficulties. Mental/emotional health quality of life was affected by factors such as feeling different from peers, perceiving oneself as “not normal”, and difficulties with social relationships.…”

“…Results specific to inherited arrhythmia patients were not distinctly reported for two studies, Costa et al; 19 Stefanelli et al, 18 with approximately 50% of the study participants having an inherited arrhythmia syndrome. Three studies, Czosek et al; 29 DeMaso et al; 30 Patel et al, 31 had only a small (⩽20%) proportion of inherited arrhythmia patients and reported results only for all study participants as a group. The retrospective chart review (Stefanelli et al 18 ) contained very limited data on mental health or quality of life, reporting only that one of 27 study All of the qualitative studies 18,19,22,26,28 gathered data using interviews.…”

“…21 The lack of statistical analyses may have been due, in part, to the relatively small sample sizes (n < 10) in three of these studies. 19,30,31 Mean scores that were not significantly lower and that had high variability 19 would suggest that approximately 30% of respondents may have scores at least 1 standard deviation below the mean. This estimation is supported by one study that found 30% of the 45 adolescent and young adult participants with implantable cardioverter defibrillators felt that their life was worse than their peers.…”

Emotional and behavioral problems in children with dilated cardiomyopathy

“…Studies have found that parent proxy-reports of quality of life in pediatric cardiac populations may differ from child selfreports. 51,52 In another pediatric cardiac population, Patel and colleagues found that parent-child agreement was stronger for more readily observable variables such as physical functioning and externalizing behavior and lower for variables which tend to be less visible, 53 such as anxiety, emotional functioning, and internalizing behavior. In contrast, in a pediatric cardiac population, Marino and colleagues found that parent-proxy reports and child self-reports on quality of life did not differ.…”