Gutierrez-Colina, Ana M. BA*; Eaton, Cyd BS*; Cheng, Patricia PhD*; Strieper, Margaret DO†,‡; Frias, Patrick MD†,‡; Gooden, Kevin CTT†; Blount, Ronald L. PhD§
Pacemakers are internally implanted medical devices used to treat cardiac arrhythmias. For pediatric patients with abnormal heart rhythms, pacemaker implantation is considered a safe standard treatment method that is associated with positive health outcomes and long-term survival rates.1 Today, there are more pacemakers placed in pediatric patients because of the improved survival rates of children with congenital heart defects.2,3 Although pacemaker implantation is expected to improve physical health status, children with pacemakers typically must follow specific medical recommendations to maintain improvements in cardiac function. For example, children with pacemakers are often advised to limit their engagement in physical activities that could damage the device or negatively impact their health status.4 Additionally, placement of the device in the body can cause scarring and a visible chest bulge.5 Some children with implanted pacemakers may also have to undergo multiple surgeries to reposition the leads that can become displaced because of growth.6 Together, these challenges and stressors associated with having a pacemaker may become sources of distress, lead to feeling different from peers, and result in poor psychosocial functioning, including experiencing more internalizing, externalizing, and behavioral problems, and lower levels of adaptive or everyday functioning skills.
Pediatric patients with pacemakers have been shown to have lower health-related quality of life (HRQOL) compared to healthy children,7,8 which may reflect underlying psychosocial adaptation issues related to having a pacemaker. However, one study examining anxiety, self-esteem, and self-competence in children with pacemakers found no differences in any of these variables compared to norms.9 A study of children with implantable cardioverter-defibrillators (ICDs) indicated that these patients have significantly more psychological problems than healthy controls.10 ICDs are different from pacemakers; although ICDs can deliver high-energy electrical pulses or shocks to defibrillate the heart and correct life-threatening abnormal heart rhythms, pacemakers only deliver low-energy electrical pulses to address irregular heartbeats. Given the risk for lower HRQOL in children with pacemakers, further research is needed to replicate existing findings and assess whether the results found by Alpern et al.9 represent the population's psychosocial functioning or whether inconsistent findings may be because of differences between the groups of children participating in the aforementioned studies.
Given these equivocal findings, further research is needed to identify the potential protective factors that may support and promote better psychosocial adaptation and HRQOL in children with pacemakers. The disability-stress-coping model by Wallander and Varni11 provides a conceptual framework to understand the risk and protective factors that may predict patients' psychosocial adaptation in the context of disease and physical illness. Within this model, pediatric patients with pacemakers may be at risk for internalizing and externalizing symptoms, social difficulties, and adaptive skills deficits because of having a medical diagnosis and managing stress related to treatment. In addition to these risks associated with having a chronic medical condition, the model identifies numerous “resistance” factors, which may protect patients against maladaptation and social or psychological difficulties. Among resistance factors, perceived self-competence or how well an individual believes he or she generally functions in various domains (e.g., academics, social interactions, athletics)12 is an intrapersonal characteristic that may contribute to better socioemotional functioning and HRQOL and buffer against negative consequences of living with an implanted pacemaker. Although “self-competence” overlaps with “self-efficacy,” the terms refer to distinct constructs. Self-competence relates to one's general perception of their ability to function in different domains, which may involve affective elements, whereas self-efficacy is traditionally considered a cognitive construct that relates to one's specific thoughts and judgments about their abilities to complete tasks.13
Level of perceived self-competence has been examined in one study that included pediatric patients with pacemakers and showed no differences compared to healthy norms.9 Self-competence levels have been assessed in greater depth in other pediatric populations. Children with leukemia and diabetes have been shown to have lower overall self-competence compared to healthy norms.14 A study conducted at an oncology summer camp found that campers rated their perceived self-competence as significantly lower compared to healthy peers.15 Additionally, a meta-analysis reported that pediatric patients with neurological disorders, obesity, or blood disorders had significantly lower social self-competence than healthy comparisons.16 Conversely, the same meta-analysis found that social self-competence was not significantly different from healthy comparisons in patients with asthma or diabetes.16 Compared with normative samples, adolescents with musculoskeletal pain did not differ on multiple domains of perceived self-competence and had better perceived self-competence related to behavioral conduct.17 Considering the equivocal findings that emerge in the self-competence literature and the lack of research examining self-competence in pediatric patients with any type of cardiac condition, further research is needed to examine how this construct functions in children with pacemakers.
In addition to examining differences in self-competence in children with chronic conditions, research has also examined associations between children's perceived self-competence and psychosocial functioning. For example, in adolescent burn survivors, poorer self-competence was related to having significantly more symptoms of depression and anxiety.18 Similarly, a significant relationship between higher perceived academic-competence and fewer depressive symptoms has been shown in children with chronic pain.19 Better perceived self-competence appears to relate to better psychosocial functioning, but this relationship has yet to be examined in children with pacemakers.
This study aims to address the lack of research examining social and psychological functioning in children with pacemakers with particular focus on self-competence as a potential protective factor against higher levels of psychological and behavioral problems, as well as lower HRQOL. Based on the review of the literature, it is hypothesized that (1) children with pacemakers will have significantly lower self-competence than that of healthy norms, (2) the psychological functioning of children with pacemakers will be significantly lower than that of healthy norms, (3) higher levels of self-competence will be correlated with lower levels of psychological functioning, and (4) levels of self-competence and HRQOL will be significantly and positively correlated.
Participants included 27 children and adolescents with implanted pacemakers and their parents. There were 16 females and 11 males between the ages of 8 and 18 years (mean = 13.59 and SD = 3.30). Caucasian was the most common ethnic group reported (n = 19; 70%), followed by African-American (n = 3; 11%), Hispanic (n = 3; 11%), Asian (n = 1; 4%), and biracial (n = 1; 4%). Almost half of the participating parents (n = 11; 40.7%) reported their annual income as $60,000 or more. Parents identified primarily as female (n = 16; 59.3%). The medical profile of children in the sample was heterogeneous representing a broad range of medical diagnoses. Classification of cardiac illness included primary electrical disease (n = 16; 59.3%) and acquired electrical disease (n = 10; 40.7%). Approximately 30% (n = 8) of children were on antiarrhythmic medication. The average age at diagnosis, last surgery, and device implantation was 3.1 (SD = 4.9, range 0–15), 10.3 (SD = 3.8, range 3–17), and 6.5 years (SD = 5.3, range 0–17), respectively. On average, children were hospitalized 0.6 (SD = 1, range 0–3) times over the previous year, had their devices implanted 6.5 (SD = 4.9, range 0–18) years ago, and underwent 3.7 (SD = 3.9, range 1–7) surgeries in their lifetime.
Demographic and Medical Information
A short parent-completed questionnaire was used to assess demographic and medical information.
Pediatric Quality of Life Inventory, Generic Core Scales, Version 4.0
The Pediatric Quality of Life Inventory (PedsQL)20 is a health-related quality of life (HRQOL) measure used in healthy populations and children with acute and chronic medical conditions. The PedsQL has 23 items and 4 subscales, including physical, emotional, social, and school functioning. Only the child self-report form was used in this study. There are separate forms for children, aged 8 to 12 years, and adolescents, aged 13 to 18 years. Participants used a 5-point Likert scale ranging from Never (0) to Almost Always (4) to rate how relevant each problem has been in the past month. The Total HRQOL score is calculated by summing all individual subscales and dividing the total by the number of subscales. Similarly, the Psychosocial HRQOL composite score is calculated by averaging the emotional, social, and school functioning subscale scores. Higher scores indicate higher levels of HRQOL. Internal consistency and construct validity for PedsQL has been empirically demonstrated.20 Cronbach's alpha values for this study ranged from .57 to .89.
Behavior Assessment System for Children: Second Edition Parent Report Scales
The Behavior Assessment System for Children: Second Edition Parent Report Scales (BASC-2-PRS) is a parent-reported multidimensional measure used to assess parent perceptions of their child's behavioral and emotional problems.21 Developmentally appropriate forms for children aged 8 to 18 years were used in this study. Participants use a 4-point Likert scale ranging from Never (1) to Almost Always (4) to rate how frequently a certain behavior occurs. This 126-item measure provides age-normed T-scores for 13 subscales, which are added to yield 4 composite indices, including externalizing problems, internalizing problems, behavioral symptoms index, and adaptive skills. BASC-2-PRS T-scores between 60 and 69 indicate “at-risk” levels for internalizing, externalizing, and behavioral problems. Similarly, T-scores that are ≥70 indicate the presence of clinically significant problems. For the adaptive skills composite score, at-risk and clinically significant problems are indicated by T-scores between 40 and 31 and ≤30, respectively. In this study, Cronbach's alpha values for the composite scales ranged from .94 to .61.
The Perceived Competence Scale for Children
The Perceived Competence Scale for Children (PCS) is a child-reported measure that assesses different domains of self-perceived competence.12 The PCS has 28 items and 4 different subscales including cognitive (e.g., “I am very good at my schoolwork”), social (e.g., “I find it hard to make friends”), physical (e.g., “I do every well at all kinds of sports”), and general competence (e.g., “I would be better if I changed a lot of things about myself”). Participants used a 4-point Likert scale ranging from Not at all (0) to A whole lot (3) to rate how well each item describes them. The PCS subscales are calculated by averaging all the individual items that comprise a specific subscale. The Total PCS score is calculated by summing all 4 subscales. Higher scores indicate higher levels of perceived self-competence. In this study, Cronbach's alpha values for the PCS subscales ranged from .86 to .69.
Participants were recruited at the Pacemaker Clinic of a major pediatric cardiac center during regular outpatient clinic appointments. Inclusion criteria specified that patients should (1) be between 8 and 18 years of age, (2) have no parent-reported developmental delays, (3) speak English, (4) be accompanied by an English-speaking caregiver, and (5) receive follow-up care for an implanted pacemaker. Potential participants were screened by the hospital staff for study eligibility. Eligible families were called before their child's scheduled medical appointment and were informed about the study. Of the 32 families approached for participation, 2 were excluded based on intellectual impairment and 1 was excluded based on limited English proficiency. Two eligible families declined to participate because of shyness and other medical stressors.
Informed consent and assent were obtained from caregivers and children, respectively. Caregivers additionally signed a Health Insurance Portability and Accountability Act (HIPAA) release authorization form to allow de-identified information to be collected from the patients' medical records. All measures were completed at the recruitment site. Caregivers completed the demographic and medical information questionnaire and the parent-proxy measures of behavioral and emotional functioning. Children completed self-report measures of HRQOL and perceived self-competence. Parents received a hospital parking voucher and children were given a pencil as compensation for their participation in the study. The Institutional Review Boards of the participating institutions approved all study procedures.
Point biserial and Pearson correlations were used to examine the associations between study variables and demographic/medical factors in preliminary analyses. One-sample t tests were used to evaluate mean differences in child-reported perceived competence and HRQOL between patients in the current sample and published normative data of healthy peers. T-scores were used to evaluate parent-reported BASC-2-PRS scores on various domains of child emotional and behavioral functioning. Guided by preliminary analyses, bivariate or partial correlational analyses were used to examine associations between perceived self-competence and child-reported HRQOL, and perceived self-competence and parent-reported behavioral and emotional functioning.
Comparison with Healthy Peers
Comparisons were made between participants' self-competence scores and the published means from a healthy comparison group on the Perceived Competence Scale for Children (PCS).12Table 1 presents the mean and SD values for both groups. One-sample t test analyses revealed that children with pacemakers reported significantly lower self-competence scores across all PCS subscales compared to healthy children. Specifically, pediatric pacemaker recipients scored significantly below the healthy comparison group on the Cognitive (t = −5.67, p ≤ .001), Social (t = −8.27, p ≤ .001), Physical (t = −10.74, p ≤ .001), and General (t = −9.17, p ≤ .001) self-competence subscales. Cohen's d effect sizes22 for these significant differences were large and ranged from 1.14 to 1.95.
On the Behavior Assessment System for Children: Second Edition Parent Report Scales (BASC-2-PRS), parent-reported mean scores on all subscales and composite scores measuring externalizing and internalizing symptoms, adaptive skills, and behavioral symptoms were within the nonclinical range (Table 2). Although mean symptom scores were in the average range, slightly over 10% (n = 3) of the children were in the at-risk or clinically significant range for externalizing problems and 14.8% (n = 4) for internalizing and behavioral problems. Additionally, 33.3% (n = 9) of the children in the sample were in the at-risk or clinically significant range for adaptive skills difficulties.
In our previous research with this sample, all domains of children's perceived health-related quality of life (HRQOL) except emotional functioning, as assessed by the Pediatric Quality of Life Inventory (PedsQL), were significantly lower compared with a normative sample of healthy children as published by Varni et al.7,20 Mean and SD values for each of the HRQOL domains in this study were as follows: Psychosocial health (mean = 70.86; SD = 14.78), School functioning (mean = 66.11; SD = 17.72), Social functioning (mean = 75.00; SD = 17.88), Emotional functioning (mean = 71.48; SD = 17.19), Physical health (mean = 71.48; SD = 19.80), and Total score (mean = 72.13; SD = 15.09).
Demographic and Medical Covariates
Gender, age, and medical variables were not associated with any of the child-reported HRQOL domains. Income and race were significantly correlated with all PedsQL domains except Emotional and School functioning. Significant correlations ranged from .40 (p ≤ .05) to .58 (p ≤ .01) for income and −.45 (p ≤ .05) to −.56 (p ≤ .01) for race, with children whose families reported higher incomes endorsing higher levels of HRQOL and with families of non-white children reporting lower HRQOL. Based on these results, race and income were entered as covariates in subsequent analyses with the PedsQL.
For the BASC-2-PRS, no demographic or medical variables were significantly associated with externalizing problems and behavioral index composite scores. Age (r = .52; p = .006), number of lifetime surgeries (r = .47; p = .013), and number of hospitalizations in the last year (r = .56; p = .003) were significantly associated with the internalizing problems composite score. Maternal level of education was significantly associated with the adaptive skills composite score (r = .43; p = .024). Based on these results, partial or bivariate correlations were used in subsequent analyses with the BASC-2-PRS.
Relationship Between Perceived Self-Competence and Health-Related Quality of Life
Perceived social competence emerged as the self-competence domain associated with the greatest number of child-reported HRQOL domains (Table 3). Specifically, perceived social competence was positively and significantly associated with the Physical, Social, Psychosocial, and Total domains of HRQOL (r = .53 to .62). Higher levels of perceived cognitive competence were also significantly associated with higher levels of Social, School, and Psychosocial functioning, as well as Total HRQOL (r = .43 to .62). Perceived physical competence was associated with Social (r = .65) and Psychosocial functioning (r = .46), as well as overall HRQOL (r = .43). Lastly, perceived general competence was significantly associated with Social (r = .53) and Psychosocial functioning (r = .46). Total self-competence was significantly associated with Social, School, Psychosocial, and Total HRQOL (r = .56 to .73). None of the perceived self-competence subscales were significantly associated with Emotional functioning.
Relationship Between Self-Competence and Child Emotional and Behavioral Functioning
Results indicated few significant correlations between the PCS and BASC-2-PRS composite scores (Table 4). Specifically, only cognitive self-competence was significantly and negatively associated with the externalizing problems (r = −.38; p = .49) and behavioral symptoms index (r = −.48; p = .01) and positively associated with adaptive skills (r = .41; p = .42) composite scores on the BASC-2-PRS.
The current study aimed to examine perceived self-competence and emotional and behavioral functioning in pediatric patients with pacemakers compared with that of healthy norms. This study also aimed to determine whether perceived self-competence functioned as a potential protective factor against poorer emotional and behavioral functioning, as well as lower levels of health-related quality of life (HRQOL) in this pediatric population. Results supported our first hypothesis that children with pacemakers would experience significantly lower levels of perceived self-competence when compared to healthy norms. Although the only previous study to examine self-competence in children with pacemakers found no significant differences in functioning compared to that of healthy peers,9 most of the research with other pediatric populations has consistently shown significantly lower levels of perceived self-competence in various domains.14,23
The conflicting evidence between findings in this study and the only other study to examine self-competence in children with pacemakers9 may be explained in several ways. First, it is possible that the illness status and medical history of pacemaker recipients in this study is different than that of the sample collected by Alpern et al.9 Advances in device technology and medical and diagnostic techniques over the past few decades have resulted in greater number of patients receiving pacemakers,24,25 suggesting that different types of heart dysfunctions that were previously untreated with pacing are currently being addressed with pacemaker technology. In adult populations, trends in pacemaker implantation in the United States suggest that patients and procedures are increasingly complex.26 Second, the demographic makeup of this study was different than that in the study by Alpern et al. This study included more non-white participants and a slightly narrower age range for the participants. The conflicting findings for self-competence levels in both studies may have reflected developmental and cultural differences in each respective sample. The current results appear to better fit within the broader body of pediatric literature, which demonstrates consistently lower self-competence when compared to healthy samples. Overall, our findings suggest that children with an implanted pacemaker have a difficult time believing in their ability to use the skills they possess to succeed in various areas of their life, including social, cognitive, and physical domains. As a result, pediatric patients in this population may benefit from interventions aimed at enhancing children's sense of self-competence. A potential intervention may involve teaching patients problem-solving skills in clinic to help enhance self-competence for completing tasks in academic, social, and medical domains. Ideally, this intervention would be implemented in a group format during a pacemaker clinic so that patients would have opportunities to meet and learn from peers with similar health conditions and treatment recommendations.
Findings from this study also supported our hypothesis that patients' levels of self-competence and HRQOL would be significantly and positively correlated. Patients with higher levels of self-competence on all domains (e.g., general, cognitive, and social) had higher levels of HRQOL in at least 2 domains of functioning (e.g., Physical, Social, and School). The current findings are consistent with the findings from a study involving adolescents with congenital cardiac disease, which indicated that children's perceived health status, rather than the actual severity of their condition, was significantly related to psychosocial issues (e.g., feeling different from other people).27 Our findings are also consistent with previous research demonstrating significant relationships between higher self-competence and better functioning in HRQOL-related domains in children with hemophilia, such as the ability to participate in activities with peers.23 All self-competence domains were significantly and positively correlated with the Social HRQOL domain, suggesting that self-competence may have the strongest role in protecting pediatric pacemaker recipients against lower social functioning. It is possible that children's belief in their ability to successfully engage in a variety of activities, including social interactions, prepares them to better cope with the challenges that they may face as a result of their illness. All self-competence domains significantly and positively correlated with the Psychosocial Composite HRQOL. For Total HRQOL, all self-competence domains except the General domain were significantly and positively correlated. Of note, none of the self-competence domains were significantly correlated with the Emotional HRQOL domain, indicating that the levels of self-competence may not play as prominent of a protective role against poorer emotional functioning. Overall, the results of this study highlight self-competence as an area that may help promote better HRQOL in children with pacemakers and suggest that interventions aimed at improving children's self-competence may indirectly affect their quality of life.
Some unexpected results did not support our hypothesized findings. First, results in this study indicated that parent-reported psychological functioning among pediatric pacemaker recipients, as a group, was not significantly lower than that of healthy norms. These findings were in contrast to the existing literature examining pediatric patients with implanted cardioverter-defibrillators (ICDs), which has shown that patients with ICDs experience significantly poorer emotional functioning across a number of domains compared to healthy peers.10 Given the differences in how these 2 devices function and the fact that only ICDs deliver shocks to the patient, it is possible that pacemakers do not affect children in the same way that ICDs do. Furthermore, it is possible that children with ICDs present with more severe underlying heart conditions than children with implanted pacemakers. Discrepancies in results may also be explained by study differences in the types of reporters. Specifically, we only collected parent report of child functioning, whereas the study examining psychosocial functioning in children with ICDs collected self-report measures of psychological functioning. Thus, it is also possible that parents are unable to detect some of the difficulties that children with pacemakers may have experienced as a result of their medical condition and/or device implantation. Future research should include multi-informant data to help clarify whether the nonsignificant findings in the current investigation are representative of the emotional and behavioral functioning of children with pacemakers, particularly given recent data suggesting that children in this population experience significantly lower levels of HRQOL across various domains.7
Also contrary to our hypothesized findings, most domains of children's self-competence were not significantly associated with their emotional and behavioral functioning as reported by their parents. These results were in contrast to the previous literature in other pediatric populations indicating that higher levels of self-competence are associated with better psychosocial functioning.18,19 Since parent report of children's psychosocial functioning was not significantly different from healthy norms overall, it is possible that the current sample had lower variability in children's emotional and behavioral functioning relative to other studies of children with chronic conditions, and, as a result, few significant relationships between the 2 constructs were detected. Differing from this pattern, perceived cognitive self-competence was significantly associated with fewer externalizing problems and overall behavioral problems and with more adaptive skills. It is possible that the overall pattern of fewer significant associations was, in part, due to pediatric pacemaker recipients reporting on their self-competence but not on their emotional and behavioral functioning, which was assessed by parent report. It is possible that there was significant variability among the different reporters that resulted in associations between self-competence and psychosocial functioning being undetected.
Despite the novelty of the questions explored in this investigation, this study is not without limitations. Statistical power was limited because of the small sample size, which influenced the types of statistical analyses that were selected to examine the data. Additionally, the data were collected from a single site with limited demographic diversity, thus potentially limiting the generalizability to pediatric patients with pacemakers in other parts of the world. Future research may increase sample sizes and enhance the diversity of participants by collaborating with other cardiac centers to conduct multisite studies. The decision to include a relatively wide age range of participants (aged 8–18 years) may have de-emphasized potential differences in emotional and behavioral functioning or aspects of HRQOL based on patients' developmental level (e.g., child vs adolescent). In addition, this study collected patient self-reports in the areas of self-competence and HRQOL but parent-proxy reports on patients' emotional and behavioral problems. Using multi-informant reports and including both parent and child report measures on all domains may improve our understanding of the psychological and social functioning of children with pacemakers in future studies. Finally, given the correlational nature of this study, it is not possible to conclude that improving self-competence will lead to improvements in HRQOL and the various domains of psychosocial functioning assessed (internalizing, externalizing, behavioral symptoms, and adaptive skills). It is possible that children with higher levels of HRQOL and fewer psychosocial problems experience greater self-competence as a result of their better functioning, in general.
In conclusion, the current study is the only one in over 20 years to examine self-competence and psychosocial functioning in a pure sample of pediatric patients with pacemakers. Therefore, there is little information available to help frame the current findings in the context of a greater body of literature pertaining to this population. All components of self-competence were lower in our sample than in healthy norms, and self-competence was related to many of the dimensions of HRQOL. In contrast, the Cognitive self-competence domain was only related to the Externalizing Problems, Behavioral Symptoms Index, and Adaptive Skills scales from the Behavior Assessment System for Children: Second Edition Parent Report Scales (BASC-2-PRS). Researchers should continue to focus on understanding social, behavioral, and emotional issues that occur in children and adolescents with pacemakers to contribute to the knowledge base in this relatively neglected area of pediatric health care.
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