Development and Implementation of a Telemental Health Program for Caregivers in a Children's Hospital Setting.

Introduction: Caregivers of children with chronic illness, such as hematology-oncology conditions, face numerous stressors, and a subset experience persistent distress and poor psychological outcomes. Many logistical and ethical barriers complicate the provision of mental health care to caregivers in children's hospital settings. Telemental health (TMH) is one method to increase access and reduce barriers. Methods: A partnership was established with an outside TMH agency to provide mental health care to caregivers of children with hematology-oncology conditions. Development and implementation strategies are described, and feasibility was measured on four dimensions. Results: One hundred twenty-seven (n = 127) caregivers were referred for TMH services in the first 28 months of program implementation. Of the total, 63/127 (49%) received TMH services for at least one session. Most caregivers had a child in active medical treatment (89%). A small portion (11%) of caregivers were bereaved or had a child in hospice care. Program feasibility was enhanced by hospital leadership support and availability of staffing, financial, and technology resources. Available resources also contributed to the practicality of program development and swift implementation and integration within the defined hospital system. Discussion: Partnership with an outside TMH agency increased access to care and reduced barriers to treating caregivers in a children's hospital setting. Offering mental health interventions to caregivers aligns with evidence-based standards of care. Future research will elucidate caregiver satisfaction with this modality of treatment and whether use of TMH reduces disparities in caregiver receipt of mental health care in children's hospital settings.

Sleepiness, Fatigue, Behavioral Functioning, and Quality of Life in Survivors of Childhood Hematopoietic Stem Cell Transplant.

OBJECTIVES: To examine subjective fatigue and sleepiness as predictors of functional outcomes in long-term pediatric hematopoietic stem cell transplant (HSCT) survivors. METHODS: Participants included 76 survivors assessed 5-14 years post-HSCT. Self-report and parent-proxy (i.e., N = 38) measures of fatigue, excessive daytime sleepiness (EDS), emotional and behavioral functioning, executive functioning, and quality of life (QOL) were completed. Health-related correlates were obtained from medical records. RESULTS: Survivors exhibited significant fatigue for self (M = 69.21 ± 20.14) and parent-proxy (M = 72.15 ± 20.79) report. EDS was endorsed for 20-33% of survivors, depending on the respondent. EDS was not significant for parent-proxy outcomes, but was associated with poorer self-reported QOL and internalizing problems (p < .0016). Fatigue was associated with poorer functioning across all domains (p's < .0016). CONCLUSIONS: A substantial number of pediatric HSCT survivors exhibit sleepiness and fatigue. Fatigue is associated with statistically and clinically greater functional difficulties, highlighting the importance of examining sleep and fatigue and considering interventions to improve alertness.

Case Series: Neurobehavioral Profile of Adolescents with PTEN Hamartoma Tumor Syndrome.

Background: PTEN Hamartoma Tumor Syndrome (PHTS) is a rare genetic condition caused by germline mutations in the phosphatase and tensin homologue (PTEN) gene with a phenotype that includes macrocephaly, cancer predisposition, developmental delay, increased risk for autism spectrum disorder (ASD), and learning difficulties. Studies characterizing neurobehavioral profiles are limited. Methods: This single-site, retrospective case series was completed in children who have PHTS followed in a cancer predisposition clinic. Demographic and clinical, data were abstracted from the medical record for 12 patients (mean age at clinic entry = 8.83 years; 42% female). Neuropsychological data were abstracted for 3 of 12 patients that were referred for testing (17-year-old female with attention-deficit/hyperactivity disorder [ADHD]; 15-year-old male with academic concerns and ASD, 12-year-old male with academic concerns). Results: Of the 12 patients, macrocephaly was present in 100%, 58% had developmental delays during early childhood, and 17% had an ASD diagnosis. Results from neuropsychological testing showed Borderline to Average range global intellectual functioning (Standard Score range: 77 to 95) along with deficits in non-verbal reasoning, visual-motor integration, math achievement, and caregiver-rated adaptive skills. Conclusion: Individuals with PHTS may present with cognitive difficulties that impact everyday functioning, with or without a neurodevelopmental diagnosis. Routine neurocognitive assessment should be considered in management guidelines.

Neurocognitive functioning in long-term survivors of pediatric hematopoietic cell transplantation.

Survivors of pediatric hematopoietic cell transplantation (HCT) are at risk for impairment in cognitive and academic function. Most research to date has focused on the first years following transplant, and less is known about the long-term effects. We examined global and specific neurocognitive functioning in long-term (>5 years post HCT) survivors in comparison to both normative data and a sample of demographically similar healthy peers. A comprehensive battery of neurocognitive measures was obtained from 83 long-term survivors and 50 healthy comparisons. Analyses were conducted to assess for differences in neurocognitive functions between survivors, normative means, and healthy comparisons, and to examine the impact of medical and demographic variables on neurocognitive performance. Survivors' performance was within the Average range across most measures, although significantly lower than both test norms and healthy comparisons on several measures. Despite generally intact neurocognitive functioning in the survivor group as a whole, survivors who experienced graft-vs.-host disease demonstrated slower processing speed and weaker verbal learning. Use of total body irradiation was not associated with any performance-based measure of neurocognitive functioning. Although subgroups of patients may be at relatively higher risk of neurocognitive impairment, the long-term neurocognitive impact for most survivors is relatively small.

Beyond clinical practice in pediatric psychology: Illustrative experiences in influencing practice changes, public opinion, and governmental policies.

Consistent with the core underpinnings of advocacy within the field of pediatrics, the discipline of pediatric psychology places an emphasis on advocating for children through clinical and research efforts as well as through a systems approach of interdisciplinary collaboration and partnering with others. In the current article, the role of advocacy efforts for pediatric psychologists within children's hospitals are highlighted. Various forms and models of advocacy are discussed, particularly as they relate to individual and organizational advocacy within children's hospitals, as well as interdisciplinary collaboration and shared advocacy with other health care providers and leadership. Training of pediatric psychologists in advocacy is also addressed, including limitations in development and application of advocacy skills for pediatric psychologists. Examples of policy change at the hospital/institutional, state, and national levels are also provided. While pediatric psychologists are in unique positions to advocate for their patients within interdisciplinary health care settings, challenges in advocacy exist. Future directions for improving advocacy for pediatric psychologists are explored. (PsycInfo Database Record (c) 2020 APA, all rights reserved).