The Association Between Caregiver Coping and Youth Clinic Attendance and Health-related Quality of Life in Pediatric Sickle Cell Disease.

Caregivers of youth with sickle cell disease (SCD) influence the youth disease management and psychosocial outcomes. Effective caregiver coping is important for improving disease management and outcomes since caregivers often report high disease-related parenting stress. This study characterizes caregiver coping and examines its relation to youth clinic nonattendance and health-related quality of life (HRQOL). Participants were 63 youth with SCD and their caregivers. Caregivers completed the Responses to Stress Questionnaire-SCD module to assess primary control engagement (PCE; attempts to change stressors or reactions to stress), secondary control engagement (SCE; strategies to adapt to stress), and disengagement (avoidance) coping. Youth with SCD completed the Pediatric Quality of Life Inventory-SCD module. Medical records were reviewed for the hematology appointment nonattendance rates. Coping factors were significantly different ( F [1.837, 113.924]=86.071, P <0.001); caregivers reported more PCE ( M =2.75, SD =0.66) and SCE ( M =2.78, SD =0.66) than disengagement ( M =1.75, SD =0.54) coping. Responses to short-answer questions corroborated this pattern. Greater caregiver PCE coping was associated with lower youth nonattendance (ß=-0.28, P =0.050), and greater caregiver SCE coping was related to higher youth HRQOL (ß=0.28, P =0.045). Caregiver coping is related to improved clinic attendance and HRQOL in pediatric SCD. Providers should assess caregiver coping styles and consider encouraging engagement coping.

The Association Between Functional Status and Health-Related Quality of Life Following Discharge from the Pediatric Intensive Care Unit.

BACKGROUND: Despite one third of children with acquired brain injury (ABI) experiencing new functional impairments following critical care admission, there is limited research investigating the impact of new functional impairments on overall health-related quality of life (HRQOL) or among important HRQOL domains. We aimed to investigate the association between new functional impairments, measured by the Functional Status Scale (FSS), and HRQOL in pediatric patients with ABI after critical care. METHODS: We conducted a secondary analysis of a prospective observational study of 275 children aged 2 months to 18 years with ABI. The primary exposure evaluated was change in FSS from baseline at hospital discharge, categorized per prior work (no change, 1-2 point increase, and ≥ 3 point increase). The primary outcome was overall HRQOL 6 months after hospital discharge, measured by the Pediatric Quality of Life Inventory (PedsQL) total score. Secondary outcomes were PedsQL domain scores. PedsQL total and domain scores were transformed into age-standardized z scores for analyses. Multiple linear regression models evaluated the association between FSS change category and HRQOL (overall and domain z scores) when controlling for demographic and clinical characteristics and were reported as ß-coefficients with 95% confidence intervals. RESULTS: Complete data were analyzed for 195 (71%) children, including 127 with traumatic brain injury. New functional impairment was common with 32 (16%) patients experiencing FSS increases ≥ 3, 50 (26%) patients with FSS increases of 1-2 points, and 113 (58%) patients with no change from prehospital baseline. The majority of children (63%) demonstrated HRQOL ratings ≥ 1 standard deviation below healthy age-based standards (z scores ≤ - 1). Regression models demonstrated older age, female sex, presence of comorbidities, and preadmission cardiopulmonary resuscitation were all significantly associated with poorer overall HRQOL (all p < 0.05). FSS increase ≥ 3 at discharge was significantly associated with worse overall HRQOL at follow-up (ß = - 1.07; 95% confidence interval = - 1.63 to - 0.52) when controlling for the aforementioned significant factors, and significantly improved model fit (p value for change = 0.001). Similar findings in secondary analyses were found for physical domain scores, with FSS increase showing a significant association with worse physical HRQOL scores and improvements in model fit. Change in FSS was not significantly associated with other HRQOL domain scores (emotional, social, school, psychosocial). CONCLUSIONS: Many children with ABI after critical care experience new functional impairments (FSS increases) and worse HRQOL than healthy peers. FSS increase at discharge is a significant risk factor for worse HRQOL in the months after hospital discharge and improves HRQOL models beyond illness and demographic variables alone.

Sleep hygiene in adolescents with asthma.

Objective: Youth with asthma are at-risk for sleep difficulties due to nocturnal asthma symptoms. Sleep hygiene, or the ability to practice consistent sleep behaviors and habits, impacts youth sleep quality and may, as a result, influence daytime cognitive functioning. The current study sought to examine the impact sleep hygiene has on sleep quality, health-related quality of life (HRQL) and sustained attention among adolescents with asthma. It was hypothesized that worse sleep hygiene would be associated with poorer sleep quality, lower school-related and overall HRQL and worse sustained attention. Methods: Participants included 41 adolescents with persistent asthma (Mage = 14.83, SD = 1.28; 51.2% male) recruited from a pediatric pulmonology clinic. Participants completed the adolescent sleep hygiene scale (ASHS), Adolescent Sleep Wake Scale (ASWS) and the Pediatric Quality of Life Index 4.0 generic core scales (PedsQL). Participants also completed the psychomotor vigilance task (PVT), an objective test of sustained attention. Results: Higher sleep hygiene scores were related to higher reported sleep quality (ß = 0.377, p = 0.015, f2 = 0.166), higher reported school-related HRQL (ß = 0.321, p = 0.040, f2 = 0.115) and better sustained attention (ß = 0.327, p = 0.045, f2 = 0.120). Conclusions: Sleep hygiene may be an important factor in sleep quality and deficits in daytime dysfunction including sustained attention and school-related quality of life. As adolescents with asthma are at heightened risk for these outcomes associated with disturbed sleep, sleep hygiene may serve as an important domain for clinical intervention.

Discrepancies among Measures of Executive Functioning in a Subsample of Young Adult Survivors of Childhood Brain Tumor: Associations with Treatment Intensity.

OBJECTIVES: Treatments for childhood brain tumors (BT) confer substantial risks to neurological development and contribute to neuropsychological deficits in young adulthood. Evidence suggests that individuals who experience more significant neurological insult may lack insight into their neurocognitive limitations. The present study compared survivor, mother, and performance-based estimates of executive functioning (EF), and their associations with treatment intensity history in a subsample of young adult survivors of childhood BTs. METHODS: Thirty-four survivors (52.9% female), aged 18 to 30 years (M=23.5; SD=3.4), 16.1 years post-diagnosis (SD=5.9), were administered self-report and performance-based EF measures. Mothers also rated survivor EF skills. Survivors were classified by treatment intensity history into Minimal, Average/Moderate, or Intensive/Most-Intensive groups. Discrepancies among survivor, mother, and performance-based EF estimates were compared. RESULTS: Survivor-reported and performance-based measures were not correlated, although significant associations were found between mother-reported and performance measures. Survivors in the Intensive/Most-Intensive treatment group evidenced the greatest score discrepancies, reporting less executive dysfunction relative to mother-reported F(2,31)=7.81, p.05). CONCLUSIONS: There may be a lack of agreement among survivor, mother, and performance-based estimates of EF skills in young adult survivors of childhood BT, and these discrepancies may be associated with treatment intensity history. Neuropsychologists should use a multi-method, multi-reporter approach to assessment of EF in this population. Providers also should be aware of these discrepancies as they may be a barrier to intervention efforts. (JINS, 2016, 22, 900-910).

Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy.

OBJECTIVE: This study examines theoretical covariates of health-related quality of life (HRQL) in parents of pediatric brain tumor survivors (PBTS) following completion of tumor-directed therapy. METHODS: Fifty PBTS (ages 6-16) completed measures of neurocognitive functioning and their parents completed measures of family, survivor, and parent functioning. RESULTS: Caregiving demand, caregiver competence, and coping/supportive factors were associated with parental physical and psychosocial HRQL, when controlling for significant background and child characteristics. CONCLUSION: Study findings can inform interventions to strengthen caregiver competence and family functioning following the completion of treatment, which may improve both parent and survivor outcomes.

Neurocognition in Pediatric Temporal Lobe Tumor-Related Epilepsy.

Tumor-related epilepsy is a common and understudied neurological comorbidity among pediatric temporal lobe tumor patients that poses risk for neurocognitive impairment (NCI). Forty-one youth with either TLT+ (n = 23) or nonneoplastic temporal lobe epilepsy (n = 18) ages 6-20 years completed routine neuropsychological evaluations. Rates of NCI were similar across groups; however, NCI was more common in nonneoplastic participants on a task of phonemic fluency, p = .047. Younger age of seizure onset and greater number of antiseizure medications were associated with NCI among TLT+ participants only. Preliminary findings suggest separate prognostic models of cognitive outcomes between TLT+ and nonneoplastic epilepsy populations may be needed.

From Evidence-Based Guidelines to Clinical Practice: Pediatric Neuropsychology Care in Multidisciplinary Clinics.

OBJECTIVE: High demand for pediatric neuropsychological care has highlighted the time- and resource-intensive nature of traditional comprehensive evaluations. Emerging care models address these constraints by facilitating tiered neuropsychological services provided in various contexts, including multidisciplinary clinics (MDCs). We aim to demonstrate feasibility and acceptability of tiered neuropsychological care in MDCs through examples from a single institution. METHODS: A review of all current MDC practices at a tertiary pediatric care center was conducted to describe clinic workflow, services provided, and triage strategies. Pediatric neuropsychologists (n = 5) and other health care providers (n = 31) completed a survey focused on experience with neuropsychology consultation in MDCs. RESULTS: Neuropsychologists provided care in 11 MDCs, including universal monitoring with consultative interviews and questionnaires, as well as targeted screening. Neuropsychologists (89%) and other health professionals (100%) reported that tiered neuropsychological services improved patient care within MDCs. Other health professionals reported utilizing results from neuropsychology MDC care to inform their clinical approach (48-90%), referrals (58%), and treatment or surveillance decisions (55-71%). CONCLUSION: Tiered neuropsychological care in pediatric MDCs is feasible, and provider experience ratings indicate high acceptability. Practical steps for development of MDCs are provided, including identifying teams, clinic goals and outcomes, operational logistics, and billing.

[Formula: see text] The multifaceted role of neuropsychology in pediatric solid organ transplant: preliminary guidelines and strategies for clinical practice.

The incidence of pediatric solid organ transplantation (SOT) has increased in recent decades due to medical and surgical advances as well as improvements in organ procurement. Survival rates for pediatric kidney, liver, and heart transplantation are above 85% but patients continue to experience complex healthcare needs over their lifetime. Long-term developmental and neuropsychological sequelae are becoming increasingly recognized in this population, although preliminary work is limited and deserves further attention. Neuropsychological weaknesses are often present prior to transplantation and may be related to underlying congenital conditions as well as downstream impact of the indicating organ dysfunction on the central nervous system. Neuropsychological difficulties pose risk for functional complications, including disruption to adaptive skill development, social-emotional functioning, quality of life, and transition to adulthood. The impact of cognitive dysfunction on health management activities (e.g., medication adherence, medical decision-making) is also an important consideration given these patients' lifelong medical needs. The primary aim of this paper is to provide preliminary guidelines and clinical strategies for assessment of neuropsychological outcomes across SOT populations for pediatric neuropsychologists and the multidisciplinary medical team, including detailing unique and shared etiologies and risk factors for impairment across organ types, and functional implications. Recommendations for clinical neuropsychological monitoring as well as multidisciplinary collaboration within pediatric SOT teams are also provided.

The Role of Sleep-Disordered Breathing Symptoms in Neurocognitive Function Among Youth With Sickle Cell Disease.

OBJECTIVE: To examine associations between sleep-disordered breathing (SDB) and executive/attentional function in pediatric sickle cell disease (SCD). METHODS: Sixty youth with SCD ages 8-18 years and caregivers completed the Pediatric Sleep Questionnaire (PSQ), Delis Kaplan Executive Function System Trail Making Test (DKEFS TMT), Psychomotor Vigilance Test (PVT), and the Behavior Rating Inventory Of Executive Function, Second Edition (BRIEF-2) Parent Report. RESULTS: The PSQ significantly predicted the BRIEF-2 Parent Report, F(1, 58) = 44.64, p < .001, R2 = 0.44, f2 = 0.77. CONCLUSIONS: Sleep-disordered breathing symptoms may predict informant-rated executive dysfunction in pediatric SCD, but not performance-based executive function.

Applying Interactive Mobile health to Asthma Care in Teens (AIM2ACT): Development and design of a randomized controlled trial.

Early adolescents have difficulties performing asthma self-management behaviors, placing them at-risk for poor asthma control and reduced quality of life. This paper describes the development and plans for testing an interactive mobile health (mHealth) tool for early adolescents, ages 12-15years, and their caregivers to help improve asthma management. Applying Interactive Mobile health to Asthma Care in Teens (AIM2ACT) is informed by the Pediatric Self-management model, which posits that helpful caregiver support is facilitated by elucidating disease management behaviors and allocating treatment responsibility in the family system, and subsequently engaging in collaborative caregiver-adolescent asthma management. The AIM2ACT intervention was developed through iterative feedback from an advisory board composed of adolescent-caregiver dyads. A pilot randomized controlled trial of AIM2ACT will be conducted with 50 early adolescents with poorly controlled asthma and a caregiver. Adolescent-caregiver dyads will be randomized to receive the AIM2ACT smartphone application (AIM2ACT app) or a self-guided asthma control condition for a 4-month period. Feasibility and acceptability data will be collected throughout the trial. Efficacy outcomes, including family asthma management, lung function, adolescent asthma control, asthma-related quality of life, and self-efficacy for asthma management, will be collected at baseline, post-treatment, and 4-month follow-up. Results from the current study will inform the utility of mHealth to foster the development of asthma self-management skills among early adolescents.