Surviving Childhood Cancer: The Psychosocial Impact On Parents

Childhood cancer is no longer viewed as inevitably fatal but rather as a chronic life-threatening illness. Child cancer patients and their families are now faced with longer phases of treatment and an inability to predict the future. Beyond a general recognition of the potential hardships they must endure, we know very little about the psychosocial consequences for the families of children who are surviving cancer.;The present study was designed to assess whether the presence of chronic strain, as experienced by families of child cancer survivors, is associated with (a) increased psychological distress, as measured by levels of depression and anxiety in the parents or (b) lower family adaptation, as measured by levels of functioning in the family and by marital adjustment. The ability of certain personal and social resources to moderate the association of chronic strain with psychological distress and family adaptation was also assessed.;Outcomes for survivors\u27 families were assessed by using a matched comparison sample of parents whose children have never experienced a chronic life-threatening illness and who lived in the neighbourhoods of the survivors\u27 families. A total of 143 parents (80 mothers and 63 fathers) of 80 cancer survivors and 151 parents (79 mothers and 72 fathers) of 80 healthy children completed self-administered questionnaires.;Overall, the families of cancer survivors were not found to be at higher risk for psychological distress or family dysfunction than families with healthy children. The relationship of chronic strain with psychological distress was observed under the condition of low levels of experienced social support, however. Social support appeared to buffer the effect that chronic strain had on depression in fathers and on anxiety in mothers and fathers. Parents of child cancer survivors may represent appropriate targets for intervention, if the assumed direction of the relationships found here can be confirmed through longitudinal research

Parental quality of life 10 years after their child’s epilepsy diagnosis

Background: Although the long-term course of childhood epilepsy is favorable in terms of seizure control, patients often face debilitating cognitive and psychosocial deficits that persist even after seizure remission. Pediatric epilepsy also has a large impact on the family and has been shown to be associated with diminished quality of life (QOL) among parents. However, the long-term outcome of parental QOL is unknown. This study aimed to 1) evaluate parental QOL 10 years after their child was diagnosed with epilepsy and 2) identify epilepsy-, child- and family-related characteristics associated with diminished parental QOL. Methods: Data were derived from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES), a large multicenter prospective cohort study of children with newly diagnosed epilepsy. Ten years after baseline evaluation, parental QOL was measured using the Short-Form Health Survey (SF-12-v2), a standardized, validated self-reported questionnaire. Parents also reported on multiple epilepsy-, child- and family characteristics at baseline and 10-year follow-up. Preliminary results: Data collection was recently completed; 173 parents completed questionnaires. Parental QOL will be compared with normative data and predictors of QOL will be evaluated. Discussion & Conclusion: It is widely recognized that the burden of epilepsy goes far beyond seizures. This study will identify the long-term impact of epilepsy on parental QOL and identify factors that diminish parental QOL in the long-term. Interdisciplinary Reflection: Epilepsy requires an interdisciplinary team managing seizures, the child’s comorbidities and family functioning. The present study elucidates the importance of an inter-professional, family centered approach to childhood epilepsy

Global assessment of the severity of epilepsy (GASE) Scale in children: Validity, reliability, responsiveness

Summary Objective The Global Assessment of Severity of Epilepsy (GASE) Scale is a single-item, 7-point global rating scale designed for neurologist-report of overall severity of epilepsy in children. Building on previous preliminary evidence of its validity and reliability for research and clinical use, this study evaluated the GASE Scale\u27s construct validity, reliability, and responsiveness to changes in severity of epilepsy. Methods Data used for the study arose from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES), a 2-year multicenter prospective cohort study (n = 374) with observations taken at baseline, and 6, 12, and 24 months after diagnosis. Construct validity and reliability were quantified using Spearman\u27s correlation and intraclass correlation coefficient (ICC). Responsiveness was assessed using both distribution-based and anchor-based indices. Results The GASE Scale was at least moderately correlated (r ≥ 0.30) with several key clinical aspects and most strongly correlated with frequency and intensity of seizures and interference of epilepsy or drugs with daily activities (r \u3e 0.30). Total variation in GASE Scale scores explained by seven core clinical aspects of epilepsy increased over time (R2 = 28% at baseline to R2 = 70% at 24 months). The GASE Scale had modest test-retest reliability (ICC range: 0.52-0.64) and was responsive to changes in clinical criteria (standardized response mean range: 0.49-0.68; probability of change range: 0.69-0.75; Guyatt\u27s responsiveness statistic range: 0.56-0.84). The GASE Scale showed potential to discriminate stable and changed patients according to select criteria and to a composite score (area under the receiver operating characteristic [ROC] curve range: 0.50-0.67). Significance Results offer additional evidence in support of the GASE Scale\u27s validity, reliability, as well as responsiveness to changes in severity of epilepsy in children. We conclude that the GASE Scale is a potentially useful tool for assessing the severity of epilepsy in both clinical and research settings

Neonatal morbidity associated with late preterm and early term birth: The roles of gestational age and biological determinants of preterm birth

Background: The aim of this study was to elucidate the role of gestational age in determining the risk of neonatal morbidity among infants born late preterm (34-36 weeks) and early term (37-38 weeks) compared with those born full term (39-41 weeks) by examining the contribution of gestational age within the context of biological determinants of preterm birth.Methods: This was a retrospective cohort study. The sample included singleton live births with no major congenital anomalies, delivered at 34-41 weeks of gestation to London-Middlesex (Canada) mothers in 2002-11. Data from a city-wide perinatal database were linked with discharge abstract data. Multivariable models used modified Poisson regression to directly estimate adjusted relative risks (aRRs). The roles of gestational age and biological determinants of preterm birth were further examined using mediation and moderation analyses.Results: Compared with infants born full term, infants born late preterm and early term were at increased risk for neonatal intensive care unit triage/admission [late preterm aRR = 6.14, 95% confidence interval (CI) 5.63, 6.71; early term aRR = 1.54, 95% CI 1.41, 1.68] and neonatal respiratory morbidity (late preterm aRR = 6.16, 95% CI 5.39, 7.03; early term aRR = 1.46, 95% CI 1.29, 1.65). The effect of gestational age was partially explained by biological determinants of preterm birth acting through gestational age. Moreover, placental ischaemia and other hypoxia exacerbated the effect of gestational age on poor outcomes.Conclusions: Poor outcomes among infants born late preterm and early term are not only due to physiological immaturity but also to biological determinants of preterm birth acting through and with gestational age to produce poor outcomes. © The Author 2013; all rights reserved