Abstract
OBJECTIVES. The aims of this study were to evaluate and compare the parent-reported and self-reported quality of life of children who have cardiovascular disease with the healthy pediatric population across age groups and to determine the relationship between perceived quality of life and severity of cardiovascular disease.
METHODS. The Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales and Cardiac Module were administered to 475 families including 347 children with cardiovascular disease during a pediatric cardiology outpatient visit. The PedsQL scores reported by children with cardiovascular disease and their parents were compared with pediatric population norms. The relationship between Pediatric Quality of Life Inventory scores and patient characteristics was examined.
RESULTS. By self-report, mean PedsQL scores for children with cardiovascular disease were significantly lower than healthy child norms for physical and psychosocial functioning. Psychosocial quality of life scores were classified as significantly impaired as reported by 21% of children ≥8 years of age. Even among children with less severe cardiovascular disease, 19.2% reported significantly impaired psychosocial quality of life. By parental report, overall PedsQL scores were not significantly different from healthy children except in the teenage group, and both the 8- to 12-year-old and teenage groups had lower mean psychosocial quality of life scores than healthy peers. Parent-reported mean PedsQL scores for both physical and psychosocial quality of life were significantly lower in children with more severe cardiovascular disease. Children with more severe cardiovascular disease reported lower mean scores for physical functioning, but smaller differences in psychosocial quality of life scores were observed related to disease severity.
CONCLUSIONS. Overall, children with cardiovascular disease perceived lower quality of life than healthy children across all age groups. As perceived by parents, overall quality of life was not significantly different in young children with cardiovascular disease, but children with more severe cardiovascular disease have worse physical and psychosocial quality of life. One in 5 children with cardiovascular disease perceives impaired psychosocial functioning, including children with mild disease severity.
Thousands of infants are born each year with congenital cardiovascular defects.1 Although most cardiovascular disease (CVD) in children is attributable to congenital malformations, children also develop other forms of CVD, including cardiomyopathy, arrhythmias, rheumatic heart disease, and complications of Kawasaki disease, adding to the prevalence of pediatric CVD. Significant advances in medical and surgical care have dramatically improved the life expectancy of these children, resulting in 85% to 90% of children with congenital CVD surviving to adulthood and an estimated 1 million Americans alive today with congenital CVD.2,3 As a result, greater attention must be focused on the outcomes of treatment beyond survival in this growing patient population, with quality of life (QoL) emerging as an important health outcome.
Past studies on outcomes in children with congenital heart disease have often described mortality and morbidity or health status, including anatomic or hemodynamic sequelae, electrophysiologic sequelae, and exercise capacity after surgical intervention.4–6 Outcomes in adult survivors with congenital CVD have included QoL parameters such as marital status, number of offspring, employment status, and health insurance coverage.7–9 Recent conceptualizations of QoL recognize the multidimensional nature of QoL, including psychological and social functioning, consistent with the World Health Organization's (WHO's) definition of health as “not only the absence of disease and infirmity, but the presence of physical, mental, and social well-being.”10 The WHO subsequently emphasized the growing consensus that quality of life is a subjective experience, defined as “individuals' perceptions of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns.”11 Recent studies on QoL outcomes in children with CVD that were based on this more multidimensional perspective were limited by small sample size and other methodologic issues, often relied on parental proxy-report of the child's QoL, and reported health status or observed functional abilities12–14 or focused on delineating developmental impairments15–17 that may affect school functioning, a single dimension of QoL in children.
This is the first large study of the subjective experience of children with CVD, using a multidimensional, well-validated, and reliable instrument, across a wide range of age and disease severity. Building on the WHO's conceptualization of health and QoL, the purposes of this study were to describe and compare the parent- and self-reported physical and psychosocial quality of life of children who have heart disease with that of the healthy pediatric population across age groups and to determine the relationship between perceived QoL and severity of CVD.
METHODS
Patient Population
A convenience sample of children aged 5 to 18 years and parents of children aged 2 to 18 years (n = 500) were recruited from the pediatric cardiology clinic at Cincinnati Children's Hospital Medical Center. The initial 344 families, including 250 children who were old enough to self-report, composed the sample that served to establish the reliability and validity of the Pediatric Quality of Life Inventory (PedsQL) 4.0 core scales and cardiac module in children with CVD.18 Patients were identified by review of the clinic schedule and medical charts. Patients were eligible when they were 2 to 18 years of age, had a previous diagnosis of heart disease, and, if operated, were >6 months after surgical intervention. Patients were excluded when the child had a major developmental disability or an associated noncardiac condition that might be expected to affect quality of life. Only 5 families declined participation. Twenty-five families were excluded after presentation at the clinic visit with significant patient comorbidities, including serious obesity, reactive airway disease, or other noncardiac problems. The final sample consisted of 475 families, including 347 child respondents. The study was approved by the institutional review board, and informed consent and child assent were obtained from the participating families.
Severity of heart disease was rated by a clinician who was blinded to QoL outcomes. Heart disease was categorized as follows: (1) mild CVD requiring no therapy or effectively treated nonoperatively (catheter therapy), (2) moderate CVD requiring no therapy or surgically corrected (curative), (3) surgically treated CVD (≥1 procedure) with significant residua or need for additional surgery, or (4) complex or severe CVD, uncorrectable or palliated (includes single ventricle). The patient population included 78 (16.4%) patients in category 1, 138 (29.1%) in category 2, 130 (27.4%) in category 3, and 129 (27.2%) in category 4.
Measures
QoL of children with CVD was assessed via the PedsQL. In comparison with other instruments used to measure QoL, the PedsQL is brief, resulting in minimal missing data, and includes both the parent's and the child's perspectives across the widest possible age range. In addition, a distinct advantage of the PedsQL generic core scales is the very large normative database of ethnically diverse healthy children and children with chronic health conditions that allows benchmarking and evaluation of differences between specific pediatric populations.19 The 23-item PedsQL 4.0 generic core scales encompass physical functioning (8 items), emotional functioning (5 items), social functioning (5 items), and school functioning (5 items). The PedsQL scales are composed of parallel child self-report and parent proxy-report formats. Child self-report includes ages 5 to 7, 8 to 12, and 13 to 18 years. Parent proxy report includes ages 2 to 4 years as well as the older age groups. The wording and content are as similar as possible across forms, differing in developmentally appropriate language and first- or third-person tense. A 5-point Likert scale is used across child self-report for ages 8 to 18 years and parent proxy report (0, never a problem; 1, almost never a problem; 2, sometimes a problem; 3, often a problem; 4, almost always a problem). For additional increase in ease of use for the young child self-report (ages 5–7 years), the Likert scale is reworded and simplified to a 3-point scale (0, not a problem; 2, sometimes a problem; 4, a lot of a problem). Items are reverse-scored and linearly transformed to a scale from 0 to 100 points such that higher scores indicate better QoL. A physical health summary score is the same as the physical functioning subscale. For creating a psychosocial health summary score, the mean is computed as the sum of the items divided by the number of items in the emotional, social, and school functioning scales. The reliability and validity of the PedsQL generic core scales has been demonstrated in healthy and patient populations with >30000 children and adolescents and their parents internationally.19–21 For comparisons, on the basis of the SE of measurement in the pediatric population, minimal clinically important differences have been determined. For example, a change in PedsQL total scale score for child self-report of 4.36 represents a minimal clinically important difference.19 In addition, a clinically meaningful cutoff score for identification of an “at-risk” status or significantly impaired health-related QoL has been determined by Varni et al,19 approximating 1 SD below the mean in the general pediatric population sample which includes healthy children and those with a chronic health condition. For providing the context for the cutoff scores, it is noted that scores below the cutoff value are similar to scores of children with severe health conditions, such as those who have newly diagnosed cancer and are receiving chemotherapy and radiation treatments.19
The PedsQL 3.0 cardiac module has 5 scales related to symptoms (7 items), perceived physical appearance (3 items), treatment anxiety (4 items), cognitive problems (5 items), and communication (3 items) for parent proxy report and children 8 to 18 years. The communication scale is not included for toddlers and young children, who do not have the cognitive or language ability to verbalize questions and explanations about the heart. An additional treatment barriers scale (5 items) is imbedded in the module to measure adherence issues for patients who take medications. We previously demonstrated the validity and reliability of the PedsQL cardiac module scales for parent proxy report for children aged 2 to 18 years and for self-report for children aged 8 to 18 years.18 Parent proxy report may be necessary in very young children with CVD, including the 5- to 7-year-olds in this study, when the psychosocial scales do not achieve acceptable reliability (α < .70), as previously reported.18 The PedsQL core and cardiac module scales can be completed by parents in < 5 minutes and by children in 5 to 10 minutes. The PedsQL Family Information Form, which contains demographic information on the child and the parent, including information required to calculate the Hollingshead socioeconomic status index, was also completed by the parent.
Statistical Analyses
PedsQL generic core scale scores for the cardiac patient sample were compared with healthy child norms across 4 age groups (toddler 2–4 years, young child 5–7 years, child 8–12 years, and teenage 13–18 years), using independent sample t tests. The healthy children sample was derived from the PedsQL healthy children database,19,20 which is composed of children without a chronic health condition by parental report. Individual psychosocial health summary scores were plotted to determine the frequency of scores > 1 SD below the general pediatric population sample mean, the cutoff score for significantly impaired QoL. Individual item analysis with ranking was performed to identify the most significant problems or lowest mean scores within each scale. Differences in means for PedsQL scale scores across the 4 categories of disease severity were determined using analysis of variance with Tukey posthoc tests. In addition, disease severity category 0 was composed of a group of 640 parents and 478 children who did not have a chronic health condition from the previously mentioned PedsQL database and were age matched to the study sample with CVD. Pearson product moment correlations were computed to assess the relationship between PedsQL scale scores and continuous variables, including demographics such as age and socioeconomic status and length of time since the most recent cardiac procedure in patients who had undergone surgery. Agreement between child self-report and parent proxy report was determined through 2-way mixed-effect model (absolute agreement, single measure) intraclass correlations.22
RESULTS
Patient and Family Characteristics
The PedsQL generic core and cardiac module scales were completed by 475 parents of and 347 children with CVD. Parent-proxy respondents were mothers (83%), fathers (14%), and others (3%). The mean age of patients at the time of PedsQL completion was 9.7 ± 4.8 years, including, by age group, 120 toddlers (2–4 years), 73 young children (5–7 years), 142 children (8–12 years), and 140 teenages (13–18 years). There were 265 boys (55.8%) and 210 girls (44.2%). The sample was white (88%), black (9.5%), other (2.5%). The mean socioeconomic status (SES) on the basis of the Hollingshead 4-factor index was 41.6, indicating on average a middle-class family SES. Most parents had graduated from high school with 9.3% having no high school diploma. One third of parents had college degrees. Distribution of patients in each disease severity category is noted in the previous section. There were no significant differences between the age groups with respect to disease severity, gender, race/ethnicity, or SES.
Seventy-seven percent of children had ≥1 cardiac surgical procedure, and approximately one third (32.8%) were currently taking medications. In children with previous surgical intervention, mean time since the most recent surgical procedure was 6.2 ± 4.6 years. Heart disease severity was significantly correlated with the number of daily medications (r = 0.476, P < .01).
Comparison of QoL Scores With Population Norms
By self-report, PedsQL scores for children with CVD were significantly lower than the pediatric norms for physical and psychosocial functioning (Table 1) in healthy children across all age groups from 5 to 18 years of age. By parent-proxy report (Table 1), children 8 to 18 years had significantly lower mean psychosocial QoL summary scores than the healthy child comparison group, but mean psychosocial QoL summary scores in the toddler and young child (5–7 years old) age groups were not significantly lower than healthy peers. Parent-reported total QoL mean scores were significantly different from healthy children only in the 13- to 18-year-old age group. Consistent with the normative population, parents of toddlers (2–4 years old) with CVD report the highest overall physical and psychosocial QoL scores with significantly higher scores than children 8 to 12 and 13 to 18 years of age (P < .001). Comparison of the mean subscale scores for physical, emotional, social, and school QoL revealed that children with CVD were most different from healthy norms related to school functioning scores: mean 72.67 ± 18.15 in children with CVD versus 81.57 ± 16.60 in healthy children (P < .001).
Mean PedsQL Scores for Children With Heart Disease and Healthy Children by Age Group
As previously noted, 1 SD below the population mean represents a meaningful cutoff point for significantly impaired QoL.19 As reported by parents of children with CVD, 15.7% of children all ages had psychosocial health summary scores >1 SD below the population mean: only 3% of toddlers, 15% of young children, 25% of children 8 to 12 years of age, and 17.4% of teenagers. By child self-report, 21% of children ≥8 years of age, 23.2% of 8- to 12-year-olds, and 18.6% of teenagers had psychosocial health scores <66.03, the cutoff point for significantly impaired QoL in the general pediatric population. Furthermore, 30 (19.2%) children in disease category 1 or 2 had self-reported psychosocial health scores in the significantly impaired range.
Differences in QoL Scores Within CVD Group by Disease Severity Category
Physical functioning scores were significantly lower for children with more severe disease (severities 3 and 4). As shown in Table 2, physical functioning scores were significantly lower for children in disease category 3 or 4 than in children in disease category 1 or 2 as rated by both children and parents (P < .01). By parent proxy report only, mean scores for physical functioning in children with mild disease were significantly higher than an age-matched healthy comparison group. As reported by parents, there was a significant difference in psychosocial health scores across disease severity categories (P < .01), with an incremental decrease in mean psychosocial QoL as disease severity increased; however, by self-report, differences in psychosocial functioning scores across disease severity categories were less significant, lower in children with the most severe disease in comparison with children with mild CVD and healthy children (P < .05). Lower school functioning scores, a component of psychosocial health, was significantly associated with more severe CVD (P < .01).
Mean PedsQL Scores by Disease Severity
On the cardiac module, symptom scale mean scores were significantly related to CVD severity category as expected, by both parent and self-report (Table 2). Similar to the generic core scales, results for nonphysical domains, including perceived physical appearance, treatment anxiety, and communication subscales, were significantly related to disease severity as reported by parents. By child self-report, however, scores for the nonphysical domains, with the exception of cognitive problems, were not significantly related to CVD severity. Cognitive functioning scores were significantly lower (P < .05) for children with the most severe CVD (category 4) as reported by both parents and children.
In light of potential and observed differences between the subjective evaluations of children and their parents, intraclass correlations were examined. Intraclass correlations are designated as follows: ≤0.40, poor to fair agreement; 0.41 to 0.60, moderate agreement; 0.61 to 0.80, good agreement; and 0.81 to 1.00, excellent agreement.23 For the total sample, intraclass correlations between child self-report and parent proxy report across scales were primarily in the moderate agreement range, ranging from 0.41 to 0.61. Consistent with the extant literature, overall agreement was highest for physical functioning and cardiac symptoms, these scales reflecting observable behaviors. For psychosocial scales, parent–child agreement was consistently lower in the adolescent (13–18 years) age group than 8- to 12-year-old children, as previously reported.18
Specific Concerns
Mean scores for individual items of the PedsQL generic core and cardiac module subscales were ranked to identify the specific problems that most frequently are perceived by children with CVD and their parents. The frequency of parents and patients reporting “often” or “almost always” experiencing the problems with the lowest mean scores are listed in Table 3. Children 5 to 7 were less likely to report the specific problems identified, but there was no difference related to age in children 8 to 18 years. With respect to physical functioning or symptoms, difficulty running or getting out of breath with exercise was the major problem reported, more frequently by parents than by patients. Feeling angry was the most frequent emotional problem identified by both parents and children with CVD. One (12.5%) in 8 children also reported worrying about what was going to happen to them. The most common school or cognitive problems reported by parents and patients were related to memory and attention. Children infrequently reported difficulty talking to doctors or nurses, but 1 in 6 children 8 to 18 years of age found it difficult to talk to nonmedical others about their heart problem or heart surgery.
Specific Concerns Reported by Parents and Patients
Correlates With QoL Scores
Effects of gender, age, family SES, and, in patients who had undergone surgery, time since surgery, on overall QoL were computed. There were no significant differences in PedsQL scores related to patient gender. Patients with higher family SES tended to have somewhat higher overall PedsQL scores as reported by both parents (r = 0.149, P < .01) and patients (r = 0.184, P < .01). There was also a small positive correlation (r = 0.183, P < .01) between age and overall PedsQL scores as reported by children with CVD; however, parental PedsQL scores were negatively correlated (r = −0.187, P < .01) with the child's age. For children who had undergone cardiac surgical intervention, higher child's PedsQL overall scores were associated with greater length of time since surgery (r = 0.211, P < .01). There was no significant correlation between time since surgery and PedsQL scores reported by parents (r = −0.030). Children who were taking medications had significantly lower overall PedsQL scores (mean ± SD: 73.29 ± 14.88) than children who were not taking medications (mean ± SD: 80.21 ± 13.96), P < .001. By both parent and child report, overall PedsQL scores were negatively correlated with number of medications (r = 0.38 and 0.35, respectively, P < .001), independent from disease severity. The mean score on the symptoms scale of the cardiac module was significantly correlated with the physical functioning score from the PedsQL generic core scale by both self-report (r = 0.696, P < .001) and parent proxy report (r = 0.737, P < .001). School functioning was significantly correlated with social functioning (r = 0.543 child report, P < .001).
DISCUSSION
Whereas the group of pediatric survivors with CVD reported significantly lower perceived QoL than children without CVD, the majority of these children had a good QoL as perceived by themselves and their parents; however, data on the distribution of self-reported psychosocial QoL scores reveal that 1 in 5 children with CVD reports significantly impaired psychosocial QoL, including children with mild or corrected CVD. Furthermore, whereas children with CVD across all age groups perceived differences in comparison with healthy peers, parental perceptions of their child's QoL differed from healthy norms only in the oldest age groups. Parents also perceived that children with more severe CVD had significantly worse psychosocial functioning. In contrast, as perceived by children, differences in psychosocial QoL are less pronounced related to disease severity, perhaps reflecting less awareness of diagnostic severity in children than their parents.
The child who is born with CVD may be aware only of the label of CVD, but the label of a cardiac diagnosis can have profound effects on the family's and society's response to the child. Children with mild CVD reported poorer psychosocial QoL than perceived by their parents. This is consistent with the findings of DeMaso et al24 and others,8,25 who reported a lack of a significant relationship between the severity of CVD and the psychosocial adjustment of children or QoL in adults. Parents may lower expectations, underestimate their child's physical abilities, or overestimate the impact of the child's physical functioning on the child's psychosocial well-being. Comparison of the results of formal exercise testing and parental estimates of exercise tolerance by Casey et al13 indicates that parents generally underestimated their child's exercise capacity. Parents who underestimate their child's physical ability may impose unnecessary restrictions on the child, depriving the child of the known health and psychological benefits of exercise. Parents may view their child as “vulnerable,” resulting in parental protective behavior that limits the child's social experiences26 and results in poorer QoL for the child with CVD in comparison with peers, as we have observed. Fear of a sudden cardiac event may not only result in unrealistic activity restrictions imposed by patients, parents, and others but also may contribute subtly to a high stress state in the child.27 This may also explain our findings related to anger experienced by children with CVD and their concerns about not participating in peer activities. Peer acceptance and participation in peer activities becomes increasingly important during adolescence. The negative correlation between advancing age and the parent's perceptions of their child's QoL and the lower agreement between parent and adolescent perceptions are consistent with the adolescent's efforts to establish independence and potential conflict with parental limit setting. The modest positive correlation between self-reported QoL and the child's age and time since surgery are encouraging, suggesting that these patients may adapt to the diagnosis of CVD over time.
In contrast to the lower self-reported QoL, the minimal difference in overall parent proxy-reported QoL for young patients and healthy 2- to 12-year-olds and, in fact, better QoL in children with mild CVD in comparison with healthy children may also be explained by altered parental expectations.13,28 For young children, when expectations are lowered, parents may deny that there are any physical or psychosocial problems and raise their appraisal of QoL. This is consistent with the findings of Møyen Laane et al,14 who speculated that a subjective perception of a higher QoL in these families may reflect orientation toward a different set of values in everyday life, with personal expectations recalibrated and coping mechanisms developed. Our findings suggest, however, that parental expectations may be challenged as expectations of the child with heart disease increase with advancing age.
It should be noted that school functioning seems to be most affected by CVD. Significantly lower school functioning of children with CVD is consistent with the findings of several recent reports suggesting that children with heart disease as a group have a higher rate of neurodevelopmental problems, with a greater frequency of problems related to oromotor control and expressive language, visual motor integration, learning, and attention.15,29–31 More school and cognitive problems for children with more severe disease are also consistent with previous reports. Trends toward worse outcomes have been observed in patients with a single ventricle, patients with biventricular circulation and longer postoperative ICU stays, and patients who were subjected to longer periods of hypothermic circulatory arrest.15,16 Mahle et al30 found that more than two thirds of children with hypoplastic left heart syndrome were thought to have attention/hyperactivity problems. Consistent with our findings, as noted by Dunbar-Masterson et al29 and others, school problems including learning disabilities and attention-deficit/hyperactivity are associated with worse psychosocial functioning and poor social relations, yet fewer than 1 in 3 children with low school functioning in our study was receiving special educational services.
Identification of the child with significantly impaired QoL may have the greatest clinical potential for improving outcomes for children with CVD. The clinical utility of such cutoff scores can guide individualized counseling and interventions to improve QoL for these children. Nearly 1 in 5 children with less severe heart disease (disease severity category 1 or 2) reported impaired psychosocial functioning. Clinicians cannot assume that children with mild CVD have no psychosocial morbidity. When physical functioning and restrictions seem unrealistic related to the cardiac diagnosis, education to clarify misconceptions and alleviate fears, exercise testing to provide reassurance, and exercise prescriptions or rehabilitation may lead to improved physical functioning and contribute to better psychosocial QoL. Recognition of emotional and social concerns can prompt referral for psychological counseling, social competence training, and peer support opportunities including camps and retreats. Children and adolescents benefit from the expression and sharing of their thoughts, feelings, and concerns. Early identification of impaired school functioning including attention-related problems should mandate more comprehensive and focused neuropsychological evaluation and targeted intervention programs.
CONCLUSIONS
Overall, children with CVD perceive lower QoL than the healthy pediatric population without a chronic health condition across all age groups. Although most children with CVD have good overall QoL, 1 in 5 children reports significantly impaired psychosocial functioning, including children with mild or repaired CVD. As perceived by parents, worse physical and psychosocial QoL is related to more severe heart disease. Although parent proxy report may be necessary for very young children with CVD, reliance on parental report may fail to identify children who have less severe CVD and have significantly impaired psychosocial QoL. Furthermore, identification of differences between parents and older children may provide important insight into knowledge gaps or unrecognized psychosocial needs and supports the need to measure the perspectives of both child and parent.
This study's strengths include the large sample size, high response rate, inclusion of both parent-proxy and child self-reports, and use of a validated instrument with normative data across a wide age span. As a single-center convenience sample, a potential study limitation is a lack of broad geographic, racial, and ethnic diversity. Objective data regarding social and cognitive functioning are not available. Use of the PedsQL in a pediatric rheumatology setting demonstrated an impact on clinical decision-making, resulting in subsequent increases in health-related QoL.32 Future research will focus on the clinical utility of the PedsQL to affect clinical practice and patient outcomes in a pediatric cardiology setting. Psychosocial problems, including learning difficulties, have been recognized as the “new hidden morbidity” in pediatric health care,33 including children with CVD.34 Identification of this hidden morbidity is essential to providing comprehensive care and improving the QoL for children with heart disease.
Footnotes
- Accepted October 19, 2007.
- Address correspondence to Karen Uzark, PhD, CPNP, Children's Hospital Medical Center, Cardiology, MLC 2003, 3333 Burnet Ave, Cincinnati, OH 45229. E-mail: karen.uzark{at}cchmc.org
Financial Disclosure: Dr Varni holds the copyright and the trademark for the PedsQL and receives financial compensation from the Mapi Research Trust, which is a nonprofit research institute that charges distribution fees to for-profit companies that use the Pediatric Quality of Life Inventory. The other authors have indicated they have no financial relationships relevant to this article to disclose.
What's Known on This Subject
Advances in medical and surgical care in recent decades have resulted in a growing population of pediatric heart disease survivors at risk for significant psychosocial morbidity, including learning difficulties.
What This Study Adds
Approximately 1 in 5 children with cardiovascular disease reports significantly impaired psychosocial quality of life, including children with mild or surgically corrected heart disease.
REFERENCES
- Copyright © 2008 by the American Academy of Pediatrics
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