Health-related quality of life outcomes in pediatric patients with cardiac rhythm devices: a cross-sectional study with case-control comparison.

BACKGROUND: Little is known about health-related quality of life (HRQoL) in pediatric patients with cardiac rhythm devices. This study aims to compare self- and proxy-reported HRQoL in patients with pacemaker (PM) and implantable cardioverter-defibrillator (ICD) to that in sex- and age-matched healthy controls and to examine predictors for generic and disease-specific HRQoL. METHODS: The study included 72 PM and ICD patients (39% females) and 72 sex- and age-matched healthy controls from 3 to 18 years of age. HRQoL data was obtained by the PedsQL 4.0 Generic Core Scales and Pediatric Cardiac Quality of Life Inventory. Medical data was collected retrospectively from medical records. RESULTS: Patients had significantly lower self- and proxy-reported generic overall HRQoL and lower physical health than healthy controls, and ICD patients also had lower psychosocial health. On multivariate analyses, generic overall HRQoL and physical health was significantly predicted by current cardiac medication (ß = -.39, p = .02 for overall HRQoL, respectively ß = -.44, p = .006 for physical health). Disease-specific overall HRQoL was only marginally predicted by child age, device type, and the presence of a structural congenital heart disease (p < .10). CONCLUSIONS: This study shows that PM and ICD patients have lower HRQoL than healthy controls and that patients who need cardiac medication are seen by their parents at great risk for lower generic overall HRQoL. Our study also indicates a trend towards higher risk for low disease-specific HRQoL in younger patients, ICD patients, and patients with a structural congenital heart disease. Special attention should be given to these patients as they may benefit from a timely clinical evaluation in order to provide supportive interventions.

Posttraumatic stress and health-related quality of life in parents of children with cardiac rhythm devices.

PURPOSE: Studies have shown a high prevalence of post-traumatic stress disorders (PTSD) among parents of children with life-threatening diseases. However, it is yet unknown whether parents of children with cardiac rhythm device develop posttraumatic stress symptoms or even PTSD. METHODS: This cross-sectional investigation is part of a comprehensive single-center study of long-term medical and psychosocial outcomes in pediatric patients with pacemaker (PM) and implantable cardioverter defibrillator (ICD). 69 patients (78%) were included in the study, with the participation of 69 mothers and 57 fathers. Parents completed the Posttraumatic Diagnostic Scale and Medical Outcomes Study Short Form-36 item questionnaire. Child's medical data was collected retrospectively from patients' hospital records. RESULTS: At assessment, the patients (39% females) were on average 11.2 years old. The predominant device type was PM in 56 cases (81%). The mean time since device implantation was 6.3 years (SD = 4.3). Full heart-disease related PTSD was diagnosed in one mother and no father, while partial heart-disease-related PTSD was diagnosed in 3 mothers (4%) and 2 fathers (4%). Parental HRQoL-especially regarding the mental health dimension-was affected in both parents. In both parents, total PTSD symptom severity scores were a significant predictor for mental health summary scores after controlling for child age at implantation, presence of other non-cardiac disease in the child, parental age, and presence of own chronic disease. CONCLUSIONS: Special attention should be given to parental PTSD symptoms in the clinical follow-up of PM and ICD patients as some parents might probably benefit from psychological support.

Health-Related Quality of Life and Psychological Adjustment of Children and Adolescents with Pacemakers and Implantable Cardioverter Defibrillators: A Systematic Review.

The absence of cardiac symptoms, the improved exercise tolerance and the increased life expectancy are the advantages of a successful cardiac device therapy. Nevertheless, the fact of a lifelong device dependency, the inherent possibility of device malfunction and the progression of the underlying heart disease may impact the health-related quality of life (HRQoL) and the psychological adjustment of these individuals. To date, an overview of findings on these topics is lacking. The objective of this study was to evaluate and summarize the current evidence on generic and disease-specific HRQoL and psychological adjustment in paediatric patients with a pacemaker (PM) or an implantable cardioverter defibrillator (ICD). A systematic literature search was conducted using relevant databases and predefined keywords. Study selection was conducted based on predefined inclusion criteria. Fourteen studies were selected which were of varying methodological quality. Overall, the studies indicated that PM/ICD patients themselves and their parents scored lower than healthy controls on generic HRQoL scales and reported similar disease-related HRQoL as patients with severe forms of congenital heart disease. Regarding psychological adjustment outcome, PM recipients and norms were not significantly different with respect to anxiety and depression symptoms, while ICD patients showed more signs of anxiety than depression. HRQoL and psychological health should be considered when setting therapy goals and evaluating medical treatment success. This approach allows an early intervention in patients at risk of maladaptation, which is especially important in the young patient undergoing crucial developmental stages.

Cardiac rhythm devices in pediatric patients: Impact on family functioning and parent's health-related quality of life.

This study compares the impact of children's cardiac rhythm devices and health status on their parents with that of healthy controls. Furthermore, it aims to ascertain whether sociodemographic characteristics and medical data are associated with parent-reported impacts. This cross-sectional study is part of a comprehensive single-center study of long-term psychosocial outcomes in pediatric patients with pacemakers and implantable cardioverter defibrillators. The study includes 69 patients with their parents: 69 mothers and 57 fathers. Parents responded to the Pediatric Quality of Life Inventory Family Impact Module and to open-ended questions assessing impact on family life and treatment satisfaction. Parents reported more negative impact on family life than healthy controls in all three summary scores. Among fathers, presence of a child's congenital heart disease and female sex is associated with lower family function. No group differences emerged regarding device type. Positive and negative cognitive aspects predominated for patients' mothers and fathers. However, one substantial difference is that mothers reported more positive and negative emotional impact than fathers. We conclude that parents' well-being should be addressed in clinical contexts, especially through emotional and practical support and open communication focused on parents' worries and concerns.

Outcome after renal transplantation. Part I: intellectual and motor performance.

Comprehensive information on neurodevelopmental outcome in children and adolescents with chronic kidney disease is still limited. Intellectual performance (IP) and motor performance (MP) were systematically assessed in 27 patients at a median age of 14.1 years (range 6.5-17) and 6 years (range 0.5-12.7) after renal transplantation (RTPL). IP was analyzed with the Wechsler Intelligence Scale for Children-III (WISC-III) in 25 patients and by the Kaufman Assessment Battery for Children in two patients. MP was evaluated by the Zurich Neuromotor Assessment. Median full- scale intelligent quotient (FSIQ) was 97 (range 49-133). Twenty-one patients had an FSIQ >or= 85 (i.e. >or= mean-1 standard deviation). The five patients with neurological comorbidity had a median FSIQ of 81 (range 49-101). Verbal IQ (VIQ) (median 104; range 50-146) was significantly (p < 0.01) higher than performance IQ (PIQ) (median 88; range 48-117). The PIQ was significantly lower compared with controls (p < 0.007), and patients scored significantly lower compared with controls in five of 11 subtests of the Wechsler Scale. All MP tasks were significantly (p < 0.01) lower than in controls, and also in children without neurological comorbidity. Socioeconomic status was significantly correlated with FSIQ (p = 0.03). IP after RTPL was within the normal range for the majority of children. PIQ was lower compared with VIQ, and MP was significantly affected in all children after RTPL.