Recovery trajectories of IQ after pediatric TBI: A latent class growth modeling analysis.

OBJECTIVE: To identify latent trajectories of IQ over time after pediatric traumatic brain injury (TBI) and examine the predictive value of risk factors within and across recovery trajectories. METHOD: 206 children ages 3-7 years at injury were included: 87 TBI (23 severe, 21 moderate, 43 complicated mild) and 119 orthopedic injury (OI). We administered intelligence tests shortly after injury (1½ months), 12 months, and 6.8 years postinjury. Latent class growth modeling was used to identify latent subgroups. Separate models examined verbal and nonverbal IQ recovery trajectories following TBI versus OI. Variables included: age at injury, sex, race, socioeconomic status, injury severity, quality of the home environment, family functioning, and parenting style. RESULTS: Both the TBI and OI analyses yielded different growth models for nonverbal (k = 3) and verbal IQ (k = 3). Although all models resulted in 3 latent classes (below average, average, and aboveaverage performance); trajectory shapes, contributors to class membership, and performance within each class varied by injury group and IQ domain. TBI severity was associated with class membership for nonverbal IQ, with less severe injuries associated with higher IQ scores; however, TBI severity did not influence verbal IQ class membership. Parenting style had a more prominent effect on verbal and nonverbal IQ within the TBI than OI trajectories. CONCLUSIONS: Findings suggest TBI severity is related to recovery trajectories for nonverbal but not verbal IQ and parenting style has stronger effects on recovery in TBI than OI. Results highlight the importance of parental factors on long-term recovery after TBI.

Demonstrating responsiveness of the pediatric cardiac quality of life inventory in children and adolescents undergoing arrhythmia ablation, heart transplantation, and valve surgery.

PURPOSE: Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific pediatric cardiac health-related quality of life (HRQOL) instrument that is reliable, valid, and generalizable. We aim to demonstrate PCQLI responsiveness in children undergoing arrhythmia ablation, heart transplantation, and valve surgery before and after cardiac intervention. METHODS: Pediatric cardiac patients 8-18 years of age from 11 centers undergoing arrhythmia ablation, heart transplantation, or valve surgery were enrolled. Patient and parent-proxy PCQLI Total, Disease Impact and Psychosocial Impact subscale scores were assessed pre- and 3-12 months follow-up. Patient clinical status was assessed by a clinician post-procedure and dichotomized into markedly improved/improved and no change/worse/much worse. Paired t-tests examined change over time. RESULTS: We included 195 patient/parent-proxies: 12.6 ± 3.0 years of age; median follow-up time 6.7 (IQR = 5.3-8.2) months; procedural groups - 79 (41%) ablation, 28 (14%) heart transplantation, 88 (45%) valve surgery; clinical status - 164 (84%) markedly improved/improved, 31 (16%) no change/worse/much worse. PCQLI patient and parent-proxies Total scores increased (p ≤ 0.013) in each intervention group. All PCQLI scores were higher (p < 0.001) in the markedly improved/improved group and there were no clinically significant differences in the PCQLI scores in the no difference/worse/much worse group. CONCLUSION: The PCQLI is responsive in the pediatric cardiac population. Patients with improved clinical status and their parent-proxies reported increased HRQOL after the procedure. Patients with no improvement in clinical status and their parent-proxies reported no change in HRQOL. PCQLI may be used as a patient-reported outcome measure for longitudinal follow-up and interventional trials to assess HRQOL impact from patient and parent-proxy perspectives.

It is important to have quality of life (QOL) measures that are sensitive to change in QOL before and after procedures and to be sensitive to change over time. The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a QOL measure specifically developed for children with cardiac disease. This study assessed the responsiveness of the PCQLI to detect change in QOL over time. QOL in Children and adolescents who were being treated for abnormal heart rhythms, heart transplantation, and aortic, pulmonary, or mitral valve surgery were assessed before and after their procedure. Children and adolescents with improved clinical status post-procedure, and their parents, reported better QOL after the procedure. Patients with no improvement from a cardiac standpoint and their parents reported no change in QOL after their procedure. The PCQLI may be used to assess QOL before and after cardiac procedures or medical treatment and follow QOL over time.

Behavioral and Emotional Outcomes in Children with Congenital Heart Disease: Effects of Disease Severity, Family Life Stress, Disease-Related Chronic Stress, and Psychosocial Adaptation.

OBJECTIVE: To evaluate whether effects of congenital heart disease (CHD) severity and family life stress on behavioral and emotional functioning are mediated by disease-related chronic stress and psychosocial adaptation. STUDY DESIGN: A cross-sectional analysis of the Pediatric Cardiac Quality of Life Inventory Testing Study was performed. Relationships between CHD severity (comprising 3 groups: mild heart disease, moderate biventricular disease, and single ventricle) and family life stress, on patient- and parent disease-related chronic stress, psychosocial adaptation, and behavioral-emotional outcomes were assessed using structural equation modeling. Patient and parent models were reported separately. RESULTS: There were 981 patient-parent dyads: 22% had mild heart disease, 63% biventricular, and 15% single ventricle; 19% of families reported moderate to major family life stress. Path models revealed that CHD severity and family life stress were mediated by disease-related chronic stress and psychosocial adaptation factors (R2 = 0.18-0.24 for patient outcomes and R2 = 0.33-0.34 for parent outcomes, P < .001, respectively). CONCLUSIONS: The effects of greater CHD severity and family life stress on behavioral-emotional outcomes were mediated by worse disease-related chronic stress and psychosocial adaptation factors. Both disease-related chronic stress and psychosocial adaptation factors may be targets for interventions to improve behavioral and emotional outcomes.

Differences in Quality of Life in Children Across the Spectrum of Congenital Heart Disease.

OBJECTIVE: To create complexity groups based upon a patient's cardiac medical history and to test for group differences in health-related quality of life (HRQOL). METHODS: Patients 8-18 years with congenital heart disease (CHD) and parent-proxies from the Pediatric Cardiac Quality of Life Inventory (PCQLI) Testing Study were included. Outcome variables included PCQLI Total, Disease Impact, and Psychosocial Impact scores. Using a patient's medical history (cardiac, neurologic, psychological, and cognitive diagnosis), latent class analysis (LCA) was used to create CHD complexity groups. Covariates included demographics and burden of illness (number of: school weeks missed, physician visits in the past year, and daily medications). Generalized estimation equations tested for differences in burden of illness and patient and parent-proxy PCQLI scores. RESULTS: Using 1482 CHD patients (60% male; 84% white; age 12.3 ± 3.0 years), latent class analysis (LCA) estimates showed 4 distinct CHD complexity groups (Mild, Moderate 1, Moderate 2, and Severe). Increasing CHD complexity was associated with increased risk of learning disorders, seizures, mental health problems, and history of stroke. Greater CHD complexity was associated with greater burden of illness (P < .01) and lower patient- and parent-reported PCQLI scores (P < .001). CONCLUSIONS: LCA identified 4 congenital heart disease (CHD) complexity groupings. Increasing CHD complexity was associated with higher burden of illness and worse patient- and parent-reported HRQOL.

Comprehensive and reliable sonographic assessment and scoring system for inflammatory lesions of the paediatric ankle.

OBJECTIVE: The clinical decision-making process in paediatric arthritis lacks an objective, reliable bedside imaging tool. The aim of this study was to develop a US scanning protocol and assess the reliability of B-mode and Doppler scoring systems for inflammatory lesions of the paediatric ankle. METHODS: As part of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) US group, 19 paediatric rheumatologists through a comprehensive literature review developed a set of standardized views and scoring systems to assess inflammatory lesions of the synovial recesses as well as tendons of the paediatric ankle. Three rounds of scoring of still images were followed by one practical exercise. Agreement among raters was assessed using two-way single score intraclass correlation coefficients (ICC). RESULTS: Of the 37 initially identified views to assess the presence of ankle synovitis and tenosynovitis, nine views were chosen for each B-mode and Doppler mode semi-quantitative evaluation. Several scoring exercises and iterative modifications resulted in a final highly reliable scoring system: anterior tibiotalar joint ICC: 0.93 (95% CI 0.92, 0.94), talonavicular joint ICC: 0.86 (95% CI 0.81, 0.90), subtalar joint ICC: 0.91 (95% CI 0.88, 0.93) and tendons ICC: 0.96 (95% CI 0.95, 0.97). CONCLUSION: A comprehensive and reliable paediatric ankle US scanning protocol and scoring system for the assessment of synovitis and tenosynovitis were successfully developed. Further validation of this scoring system may allow its use as an outcome measure for both clinical and research applications.

Reliability of the Pediatric Specific Musculoskeletal Ultrasound Scoring Systems for the Elbow, Wrist, and Finger Joints.

OBJECTIVE: Musculoskeletal ultrasound (MSUS) is increasingly being used in the evaluation of pediatric musculoskeletal diseases. In order to provide objective assessments of arthritis, reliable MSUS scoring systems are needed. Recently, joint-specific scoring systems for arthritis of the pediatric elbow, wrist, and finger joints were proposed by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) MSUS workgroup. This study aimed to assess the reliability of these scoring systems when used by sonographers with different levels of expertise. METHODS: Members of the CARRA MSUS workgroup attended training sessions for scoring the elbow, wrist, and finger. Subsequently, scoring exercises of B mode and power Doppler (PD) mode still images for each joint were performed. Interreader reliability was determined using 2-way single-score intraclass correlation coefficients (ICCs) for synovitis and Cohen [Formula: see text] for tenosynovitis. RESULTS: Seventeen pediatric rheumatologists with different levels of MSUS expertise (1-15 yrs) completed a 2-hour training session and calibration exercise for each joint. Excellent reliability (ICC > 0.75) was found after the first scoring exercise for all the finger and elbow views evaluated on B mode and PD mode, and for all of the wrist views on B mode. After a second training session and a scoring exercise, the wrist PD mode views reached excellent reliability as well. CONCLUSION: The preliminary CARRA MSUS scoring systems for assessing arthritis of the pediatric elbow, wrist, and finger joints demonstrate excellent reliability among pediatric MSUS sonographers with different levels of expertise. With further validation, this reliable joint-specific scoring system could serve as a clinical tool and scientific outcome measure.

Findings from a Randomized Controlled Trial of SMART: An EHealth Intervention for Mild Traumatic Brain Injury.

OBJECTIVE: The aim of this study was to examine the efficacy of the SMART (Self-Management After Recent Traumatic brain injury) program and potential moderators. METHODS: Parallel randomized controlled trial (ClinicalTrials.gov Identifier: NCT03498495) was conducted. Eligibility criteria included treatment for mild traumatic brain injury in the emergency department and age 11-18 years. Participants were assigned equally to SMART (n = 35) or usual care (UC; n = 36). SMART included symptom monitoring and online modules supporting the return to activities and symptom management. Coping and quality of life (QoL) (primary outcomes) and post-concussive symptoms (secondary outcome) were assessed at baseline and weekly for 4 weeks. RESULTS: Groups did not differ in coping, QoL, or return to pre-injury symptom levels at any time point. Problem-focused engagement (PFE) moderated group differences over time (p = .02). At high PFE, UC participants reported lower QoL at time 1 (effect size [ES] = 0.60); SMART participants did not report a decline at any point. At low PFE, SMART participants reported declining QoL from pre-injury to time 1 (ES = 0.68), whereas UC participants reported an increase from time 1 to 3 (ES = 0.56). PFE also moderated group differences on the Health and Behavior Inventory (HBI) cognitive (p = .02) and somatic symptom scales (p = .05). At high PFE, SMART participants reported a more rapid return to pre-injury levels than UC participants (p = .05). Resilience also moderated group differences in QoL and HBI cognitive recovery. CONCLUSION: Effectiveness of the SMART app varied based on preinjury coping styles and resilience, underscoring the potential need to tailor treatments to individual characteristics.

Long-Term Quality of Life in Congenital Heart Disease Surgical Survivors: Multicenter Retrospective Study of Surgical and ICU Explanatory Factors.

OBJECTIVES: Greater congenital heart disease (CHD) complexity is associated with lower health-related quality of life (HRQOL). There are no data on the association between surgical and ICU factors and HRQOL in CHD survivors. This study assess the association between surgical and ICU factors and HRQOL in child and adolescent CHD survivors. DESIGN: This was a corollary study of the Pediatric Cardiac Quality of Life Inventory (PCQLI) Testing Study. SETTING: Eight pediatric hospitals participating in the PCQLI Study. PATIENTS: Patients in the study had the Fontan procedure, surgery for tetralogy of Fallot (TOF), and transposition of the great arteries (TGAs). MEASUREMENTS AND MAIN RESULTS: Surgical/ICU explanatory variables were collected by reviewing the medical records. Primary outcome variables (PCQLI Total patient and parent scores) and covariates were obtained from the Data Registry. General linear modeling was used to create the multivariable models. There were 572 patients included: mean ± sd of age 11.7 ± 2.9 years; CHD Fontan 45%, TOF/TGA 55%; number of cardiac surgeries 2 (1-9); and number of ICU admissions 3 (1-9). In multivariable models, lowest body temperature on cardiopulmonary bypass (CPB) was negatively associated with patient total score (p < 0.05). The total number of CPB runs was negatively associated with parent-reported PCQLI Total score (p < 0.02). Cumulative days on an inotropic/vasoactive drug in the ICU was negatively associated with all patient-/parent-reported PCQLI scores (p < 0.04). Neurological deficit at discharge was negatively associated with parent-reported PCQLI total score (p < 0.02). The variance explained by these factors ranged from 24% to 29%. CONCLUSIONS: Surgical/ICU factors, demographic, and medical care utilization variables explain a low-to-moderate amount of variation in HRQOL. Research is needed to determine whether modification of these surgical and ICU factors improves HRQOL, and to identify other factors that contribute to unexplained variability.

Usage Patterns of an mHealth Symptom Monitoring App Among Adolescents With Acute Mild Traumatic Brain Injuries.

OBJECTIVE: To understand usage patterns of SMART (Self-Monitoring Activity Regulation and Relaxation Treatment) mHealth app among adolescents with acute mild traumatic brain injuries (mTBIs) and to identify individual characteristics that influenced app usage. SETTING: Emergency departments of tertiary care children's medical center. PARTICIPANTS: Children aged 11 to 18 years with mTBI in the past 2 weeks, English-speaking, no evidence of severe TBI, and no preexisting neurological impairment. DESIGN: Nested cohort of the intervention arm of a randomized clinical trial (n = 34). MHEALTH APP INTERVENTION: SMART was a month-long educational program on mTBI designed to promote self-monitoring and management of recovery. SMART included digital symptom and activity self-monitoring surveys, feedback on symptom changes, and 8 modules providing psychoeducation, strategies for symptom management, and training in active problem solving. MAIN MEASURES: App usage time, navigation, and interaction data were automatically collected. Usage involved inputting symptom ratings/activities and reviewing modules. Patterns of symptom/activity reporting and completion of learning modules data were analyzed. Predictors of app utilization, including individual characteristics, resilience (Connor-Davidson Resilience Scale), and coping (Coping Strategies Inventory-Short Form), were analyzed using Spearman correlations. RESULTS: Participants completed symptom monitoring an average of 9 days over the month. Participants completed an average of 1.87 learning modules out of 7. Parent income and education, comorbid attention-deficit/hyperactivity disorder (ADHD), and emotional engagement coping style predicted symptom monitoring. Parental income, comorbid ADHD, and greater reliance on emotional engagement coping predicted module completion. SIGNIFICANT ADVERSE EVENTS: None. CONCLUSION: Adolescents of higher socioeconomic status and those who manage their emotions using active engagement spent more time on both components of the SMART program.

Online Family Problem-Solving Therapy (F-PST) for Executive and Behavioral Dysfunction After Traumatic Brain Injury in Adolescents: A Randomized, Multicenter, Comparative Effectiveness Clinical Trial.

OBJECTIVE: To examine the comparative effectiveness of 3 modes of family problem-solving therapy (F-PST): therapist-guided online, self-guided online, and face-to-face. SETTING: Four children's hospitals and a general hospital with pediatric commitment. PARTICIPANTS: A total of 150 adolescents aged 14 to 18 years, previously hospitalized with traumatic brain injury (TBI), and evidence of behavior problems at enrollment. DESIGN: Multicenter, randomized clinical trial. MAIN MEASURES: Behavior Rating Inventory of Executive Function (BRIEF) Global Executive Composite (GEC), Behavior Regulation Index, and Metacognition Index, and Strengths and Difficulties Questionnaire (SDQ) Total at baseline and 6 and 9 months later. RESULTS: Mixed-model intention-to-treat analyses of comparative effectiveness failed to reveal statistically significant differences among treatment groups. At 6 months, parent BRIEF-GEC improved for the therapist-guided and self-guided, online groups. Effects remained significant and increased in magnitude at 9 months for the self-guided online group. Scores for the Self-guided online group significantly improved from baseline to 9 months on the SDQ Total. CONCLUSIONS: This comparative effectiveness study supports the utility of both self- and therapist-guided online F-PST in improving executive function behaviors in adolescents following TBI. Further work regarding clinical implementation and how best to integrate telehealth with ongoing rehabilitation care is warranted.

Cosmetic outcomes and quality of life in children with cardiac implantable electronic devices.

BACKGROUND: Axillary implant location is an alternative implant location in patients for cardiac implantable electronic devices (CIEDs) for the purposes of improved cosmetic outcome. The impact from the patient's perspective is unknown. The purpose of this study was to compare scar perception scores and quality of life (QOL) in pediatric patients with axillary CIED implant location versus the standard infraclavicular approach. METHODS: This is a multicenter prospective study conducted at eight pediatric centers and it includes patients aged from 8 to 18 years with a CIED. Patients with prior sternotomy were excluded. Scar perception and QOL outcomes were compared between the infraclavicular and axillary implant locations. RESULTS: A total of 141 patients (83 implantable cardioverter defibrillator [ICD]/58 pacemakers) were included, 55 with an axillary device and 86 with an infraclavicular device. Patients with an ICD in the axillary position had better perception of scar appearance and consciousness. Patients in the axillary group reported, on average, a total Pediatric QOL Inventory score that was 6 (1, 11) units higher than the infraclavicular group, after adjusting for sex and race (P = 0.02). CONCLUSIONS: QOL is significantly improved in axillary in comparison to the infraclavicular CIED position, regardless of device type. Scar perception is improved in patients with ICD in the axillary position.

The Relationship of Adolescent and Parent Preferences for Treatment Modality With Satisfaction, Attrition, Adherence, and Efficacy: The Coping With Head Injury Through Problem-Solving (CHIPS) Study.

OBJECTIVE: To characterize treatment preferences for delivery of family problem-solving treatment (F-PST) to adolescents with behavioral challenges following traumatic brain injury (TBI) and to examine associations with attrition, adherence, satisfaction, and efficacy. METHOD: Adolescents who had been hospitalized for moderate to severe TBI were randomized to face-to-face F-PST (n = 34), therapist-guided online F-PST (n = 56), and self-guided online F-PST (n = 60). Adolescents and parents rated treatment convenience and anticipated benefit before group assignment. Sessions completed served as an index of adherence. Satisfaction was rated posttreatment. The Behavior Rating Inventory of Executive Function and Strengths and Difficulties Questionnaire were used to assess parent-reported behavioral concerns. RESULTS: Both parents and adolescents were more likely to agree or strongly agree that they anticipated self-guided online F-PST to be the most convenient relative to either of the therapist-involved approaches. Parents were also less likely to anticipate face-to-face treatment as most beneficial, relative to the two online treatments. Adolescent preferences were significantly related to attrition with 27% versus 13% dropout rates for those assigned to nonpreferred and preferred treatments, respectively. Parent and adolescent preferences before treatment were unrelated to post-intervention satisfaction, adherence, or improvements in parent-reported child behavior problems. CONCLUSIONS: Online treatments are perceived favorably among adolescents with TBI and their parents. For adolescents, these pretreatment preferences influenced treatment completion. Poor correspondence between initial preferences and posttreatment satisfaction and benefit suggests that therapeutic experience more strongly influences ultimate satisfaction.

A Randomized Comparative Effectiveness Trial of Family-Problem-Solving Treatment for Adolescent Brain Injury: Parent Outcomes From the Coping with Head Injury through Problem Solving (CHIPS) Study.

OBJECTIVE: To examine changes in depression and distress in parents of adolescents receiving family-problem-solving therapy (F-PST) following traumatic brain injury. METHOD: Families of adolescents hospitalized for moderate to severe traumatic brain injury were randomized to face-to-face F-PST (34), therapist-guided online F-PST (56), or self-guided online F-PST (60). Outcomes were assessed pretreatment and 6 and 9 months later. Parents rated depression and distress on the Center for Epidemiological Studies Depression Scale and the Brief Symptom Inventory, respectively. Mixed modeling was used to examine changes over time and treatment moderators. RESULTS: The therapist-guided online group had significant reductions in parental depression over time. Analyses of slopes of recovery revealed differential improvement on the Center for Epidemiological Studies Depression Scale between the 2 online groups, with no significant change in depressive symptoms following self-guided F-PST. On the Brief Symptom Inventory Global Severity Index, the therapist-guided online group reported significant improvement from baseline to 6 months that was maintained at 9 months. The face-to-face and self-guided online groups reported significant reductions in distress between 6 and 9 months with corresponding large effect sizes. Differences on the Center for Epidemiological Studies Depression Scale between therapist-guided and self-guided online groups at the 9-month follow-up were more pronounced in families of lower socioeconomic status, t103 = -2.87; P = .005. CONCLUSIONS: Findings provide further support for the utility of therapist-guided online F-PST in reducing parental depression and distress following pediatric traumatic brain injury and offer limited evidence of the efficacy of self-guided online treatment for these outcomes. Families of lower socioeconomic status may benefit more from therapist involvement.

A Comparison of 2 Online Parent Skills Training Interventions for Early Childhood Brain Injury: Improvements in Internalizing and Executive Function Behaviors.

OBJECTIVE: To examine the effectiveness of a web-based parenting intervention (Internet-Based Interacting Together Everyday: Recovery After Childhood TBI [I-InTERACT]) and an abbreviated version (Express) in reducing executive dysfunction and internalizing problems among young children following traumatic brain injury (TBI). METHOD: Parents of 113 children (ages 3-9 years) who had sustained a TBI were randomized to 1 of 3 treatment groups: I-InTERACT, Express, or an Internet Resource Comparison (IRC) group. Parents who participated in either I-InTERACT or Express completed self-guided web sessions and received live coaching of their parenting skills via videoconferencing with a therapist. I-InTERACT included additional psychoeducation, stress management, and family communication skills (eg, marriage, grief, pain, and sleep). Analyses of covariance were utilized to compare the groups on parent-reported executive function behaviors (ie, Behavior Rating Inventory of Executive Function) and internalizing symptoms (ie, Child Behavior Checklist) at baseline and 6 months. RESULTS: Parents who participated in Express reported significantly lower levels of executive dysfunction than those in I-InTERACT, ß = -0.49; t(2, 73) = -2.47, P = .048, and significantly lower levels of withdrawal than those in the IRC group, ß = -0.44; t(2, 74) = -2.22, P = .03. The Express group did not significantly differ from the IRC group on executive function behaviors or the I-InTERACT group on internalizing problems, all P > .05. Children with more problems at baseline, families with lower education levels, and parents with more symptoms of depression benefited most. CONCLUSION: A brief, online parent training intervention may be efficacious in improving executive dysfunction and internalizing problems following early TBI, particularly among children of lower socioeconomic status or with existing behavioral concerns.

Psychosocial functioning of parents of children with heart disease-describing the landscape.

The aim was to describe the psychological functioning of parents of school-age children with heart disease (HD) in a large-scale, transnational evaluation of parent dyads across the spectrum of cardiac diagnoses and a range of psychosocial domains. Parents of children with HD attending routine out-patient cardiology follow-up visits completed questionnaires assessing their mental health, coping, and family functioning. Parents (1197 mothers and 1053 fathers) of 1214 children (mean age: 12.6 years; S.D. 3.0 years; median time since last surgery: 8.9 years) with congenital or acquired HD from three centers each in the UK and the USA participated (80% response rate). Parents of children with milder HD demonstrated few differences from healthy norms and had significantly lower scores on measures of illness-related stress and post-traumatic stress than parents of children with single ventricle conditions or cardiomyopathy. Parents in these latter two diagnostic sub-groups had significantly higher levels of anxiety and depression than healthy norms but did not differ on other measures of family functioning and coping skills. There were few differences between parents from the UK and the USA. Agreement between mothers and fathers within a dyad was highest for the measure of frequency of illness-related stressors (ICC = 0.67) and lowest for anxiety (ICC = 0.12).Conclusion: Our results suggest two different pathways for the long-term psychological well-being of parents of children with HD: on the one hand, more complex HD is associated with poorer long-term psychosocial outcomes; in contrast, there are also grounds for optimism, particularly for parents of children with less complex conditions, with better psychological outcomes noted for some groups of parents compared to previously reported early psychosocial outcomes. Future work needs to identify factors other than disease severity which might explain poorer (or better) functioning in some parents of children with more complex HD. What is Known: • Parents of children with congenital heart disease report elevated levels of anxiety, depression, and stress after cardiac surgery in infancy. • Maternal mental health problems can have an adverse impact on the psychological adjustment of the child with congenital heart disease. What is New: • Parents of children with milder forms of heart disease do not differ from healthy norms in the longer term and psychological outcomes are better than might be expected from early findings. • More complex diagnoses, particularly functional single ventricle conditions and cardiomyopathy, are associated with poorer long-term psychosocial outcomes for parents.

Investigating the Connection Between Traumatic Brain Injury and Posttraumatic Stress Symptoms in Adolescents.

OBJECTIVE: To identify potentially modifiable individual and social-environmental correlates of posttraumatic stress symptoms (PTSS) among adolescents hospitalized for traumatic brain injury (TBI). SETTING: Four pediatric hospitals and 1 general hospital in the United States. PARTICIPANTS: Children ages 11 to 18 years, hospitalized for moderate-severe TBI within the past 18 months. DESIGN: Retrospective cross-sectional analysis. MAIN MEASURES: The University of California at Los Angeles (UCLA) Post-traumatic Stress Disorder (PTSD) Reaction Index and the Youth Self-Report (YSR) PTSD subscale. RESULTS: Of 147 adolescents enrolled, 65 (44%) had severe TBI, with an average time since injury of 5.8 ± 4 months. Of the 104 who completed the UCLA-PTSD Reaction Index, 22 (21%) reported PTSS and 9 (8%) met clinical criteria for PTSD. Of the 143 who completed the YSR-PTSD subscale, 23 (16%) reported PTSS and 6 (4%) met clinical criteria for PTSD. In multivariable analyses, having a negative approach to problem solving and depressive symptoms were both associated (P < .001) with higher levels of PTSS based on the UCLA-PTSD Reaction Index (ß = 0.41 and ß = 0.33, respectively) and the YSR-PTSD subscale (ß = 0.33 and ß = 0.40, respectively). CONCLUSION: Targeting negative aspects of problem solving in youths after brain injury may mitigate PTSS.

Biopsychosocial Predictors of Quality of Life Outcomes in Pediatric Congenital Heart Disease.

The purpose of this prospective multi-center cross-sectional study was to identify key biopsychosocial factors that impact quality of life (QOL) of youth with congenital heart disease (CHD). Patient-parent pairs were recruited at a regular hospital follow-up visit. Patient- and parent-proxy-reported QOL were assessed using the Pediatric Cardiac Quality of Life Inventory (PCQLI). Wallander's and Varni's disability-stress coping model guided factor selection, which included disease factors, educational impairment, psychosocial stress, child psychological and parent/family factors. Measures utilized for these factors included the Pediatric Inventory for Parents, Self-Perception Profile for Children/Adolescents, Child Behavior Checklist, Revised Children's Manifest Anxiety Scale, Child PTSD Symptom Scale, State-Trait Anxiety Inventory, and Posttraumatic Diagnostic Scale. Ordinary least squares regression was applied to test the theoretical model, with backwards stepwise elimination process. The models accounted for a substantial amount of variance in QOL (Patient-reported PCQLI R 2 = 0.58, p < 0.001; Parent-proxy-reported PCQLI R 2 = 0.60, p < 0.001). For patient-reported QOL, disease factors, educational impairment, poor self-esteem, anxiety, patient posttraumatic stress, and parent posttraumatic stress were associated with lower QOL. For parent-proxy-report QOL, disease factors, educational impairment, greater parental medical stress, poorer child self-esteem, more child internalizing problems, and parent posttraumatic stress were associated with lower QOL. The results highlight that biopsychosocial factors account for over half the variance in QOL in CHD survivors. Assessing and treating psychological issues in the child and the parent may have a significant positive impact on QOL.

Impaired cerebral autoregulation and elevation in plasma glial fibrillary acidic protein level during cardiopulmonary bypass surgery for CHD.

BACKGROUND: Cerebrovascular reactivity monitoring has been used to identify the lower limit of pressure autoregulation in adult patients with brain injury. We hypothesise that impaired cerebrovascular reactivity and time spent below the lower limit of autoregulation during cardiopulmonary bypass will result in hypoperfusion injuries to the brain detectable by elevation in serum glial fibrillary acidic protein level. METHODS: We designed a multicentre observational pilot study combining concurrent cerebrovascular reactivity and biomarker monitoring during cardiopulmonary bypass. All children undergoing bypass for CHD were eligible. Autoregulation was monitored with the haemoglobin volume index, a moving correlation coefficient between the mean arterial blood pressure and the near-infrared spectroscopy-based trend of cerebral blood volume. Both haemoglobin volume index and glial fibrillary acidic protein data were analysed by phases of bypass. Each patient's autoregulation curve was analysed to identify the lower limit of autoregulation and optimal arterial blood pressure. RESULTS: A total of 57 children had autoregulation and biomarker data for all phases of bypass. The mean baseline haemoglobin volume index was 0.084. Haemoglobin volume index increased with lowering of pressure with 82% demonstrating a lower limit of autoregulation (41±9 mmHg), whereas 100% demonstrated optimal blood pressure (48±11 mmHg). There was a significant association between an individual's peak autoregulation and biomarker values (p=0.01). CONCLUSIONS: Individual, dynamic non-invasive cerebrovascular reactivity monitoring demonstrated transient periods of impairment related to possible silent brain injury. The association between an impaired autoregulation burden and elevation in the serum brain biomarker may identify brain perfusion risk that could result in injury.

Exercise Performance and 22q11.2 Deletion Status Affect Quality of Life in Tetralogy of Fallot.

OBJECTIVE: To identify mediators of health status and quality of life (QOL) in children and adolescents aged 8-18 years old following surgical repair for tetralogy of Fallot (TOF), including resource use, exercise performance, and 22q11.2 deletion status. STUDY DESIGN: We performed a corollary study to a cross-sectional analysis of subjects following repair for TOF that completed cardiac magnetic resonance imaging, cardiopulmonary exercise tests, and instruments assessing health status and QOL. General linear models were used to test for mediation. RESULTS: A total of 29 of 151 (19%) patients carried a 22q11.2 deletion. Parents of children with a deletion compared with those without a deletion reported worse physical and psychosocial functioning on the Child Health Questionnaire. The patients with a 22q11.2 deletion and their parents reported lower total and Disease Impact scores compared with the group without a deletion on the Pediatric Cardiac Quality of Life Inventory. Medical care use negatively correlated with measures of health status/QOL. Greater maximum work correlated with better patient health status and QOL, regardless of deletion status. Exercise performance mediated the association between deletion status and parent-reported outcomes (unstandardized effects ranging from 2.4 to 4.2) and patient-reported Disease Impact (0.99; 95% CI 0.02-2.70). CONCLUSION: Children and adolescents following repair for TOF seem to suffer significant challenges to their health status and QOL, which is amplified markedly in the context of the 22q11.2 deletion syndrome, and related to exercise performance.

Problem-Solving After Traumatic Brain Injury in Adolescence: Associations With Functional Outcomes.

OBJECTIVE: To examine the association of problem-solving with functioning in youth with traumatic brain injury (TBI). DESIGN: Cross-sectional evaluation of pretreatment data from a randomized controlled trial. SETTING: Four children's hospitals and 1 general hospital, with level 1 trauma units. PARTICIPANTS: Youth, ages 11 to 18 years, who sustained moderate or severe TBI in the last 18 months (N=153). MAIN OUTCOME MEASURES: Problem-solving skills were assessed using the Social Problem-Solving Inventory (SPSI) and the Dodge Social Information Processing Short Stories. Everyday functioning was assessed based on a structured clinical interview using the Child and Adolescent Functional Assessment Scale (CAFAS) and via adolescent ratings on the Youth Self Report (YSR). Correlations and multiple regression analyses were used to examine associations among measures. RESULTS: The TBI group endorsed lower levels of maladaptive problem-solving (negative problem orientation, careless/impulsive responding, and avoidant style) and lower levels of rational problem-solving, resulting in higher total problem-solving scores for the TBI group compared with a normative sample (P<.001). Dodge Social Information Processing Short Stories dimensions were correlated (r=.23-.37) with SPSI subscales in the anticipated direction. Although both maladaptive (P<.001) and adaptive (P=.006) problem-solving composites were associated with overall functioning on the CAFAS, only maladaptive problem-solving (P<.001) was related to the YSR total when outcomes were continuous. For the both CAFAS and YSR logistic models, maladaptive style was significantly associated with greater risk of impairment (P=.001). CONCLUSIONS: Problem-solving after TBI differs from normative samples and is associated with functional impairments. The relation of problem-solving deficits after TBI with global functioning merits further investigation, with consideration of the potential effects of problem-solving interventions on functional outcomes.