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Objective: Survivors of pediatric brain tumors (SPBT) are at risk for social deficits, fewer friendships, and poor peer relations. SPBT also experience reduced brain connectivity via microstructural disruptions to white matter from neurological insults. Research with other populations implicates white matter connectivity as a key contributor to poor social functioning. This case-controlled diffusion-weighted imaging study evaluated structural connectivity in SPBT and typically developing controls (TDC) and associations between metrics of connectivity and social functioning., Methods: Diffusion weighted-imaging results from 19 SPBT and 19 TDC were analyzed using probabilistic white matter tractography. Survivors were at least 5 years post-diagnosis and 2 years off treatment. Graph theory statistics measured group differences across several connectivity metrics, including average strength, global efficiency, assortativity, clustering coefficient, modularity, and betweenness centrality. Analyses also evaluated the effects of neurological risk on connectivity among SPBT. Correlational analyses evaluated associations between connectivity and indices of social behavior., Results: SPBT demonstrated reduced global connectivity compared to TDC. Several medical factors (e.g., chemotherapy, recurrence, multimodal therapy) were related to decreased connectivity across metrics of integration (e.g., average strength, global efficiency) in SPBT. Connectivity metrics were related to peer relationship quality and social challenges in the SPBT group and to social challenges in the total sample., Conclusions: Microstructural white matter connectivity is diminished in SPBT and related to neurological risk and peer relationship quality. Additional neuroimaging research is needed to evaluate associations between brain connectivity metrics and social functioning in SPBT., (© 2024. The Author(s).)

Objective: Youth with neurofibromatosis type I (NF1) demonstrate high rates of Autism Spectrum Disorder (ASD) and Attention Deficit/Hyperactivity Disorder (ADHD), which often have overlapping behaviors. Diagnostic clarity is important to guide services. This study evaluated ASD classification in NF1 using various methods and whether those with ADHD suspicion have more social challenges associated with ASD., Method: 34 youth with NF1 ( M age  = 10.5 ± 1.6 years), completed ASD assessments that combined direct observation and informant ratings to yield a Clinician Best Estimate (CBE) classification. Caregivers rated ASD-related social challenges using the Social Responsiveness Scale- 2 nd Edition (SRS-2)., Results: ASD classification varied depending on the method, ranging from 32% using low-threshold SRS-2 cut-scores (T ≥ 60) to under 6% when combining cut scores for diagnostic observational tools and stringent SRS-2 cut-scores (T ≥ 70). 14.7% had a CBE ASD classification. 44% were judged to have autism traits associated with a non-ASD diagnosis. The 52.9% with a suspicion of ADHD had higher SRS-2 scores than those without ADHD, F (7, 26) = 3.45, p < .05, Wilk's lambda = 0.518, partial eta squared = 0.482., Conclusions: Findings highlight the importance of rigorous diagnostic methodology when evaluating ASD in NF1 to inform the selection of targeted interventions for socialization challenges in NF1.

Purpose: Children with cancer experience low quality of life (QOL), yet heterogeneity underscores a need to understand how risk and resilience factors interact. This study evaluated if family functioning relates to QOL differentially depending on diagnosis and treatment intensity., Methods: Participants included children (ages 8-14) who completed treatment within six months for either brain tumor (BT; n  = 42) or non-central nervous system solid tumor (ST; n  = 29). Caregivers and children rated QOL and family functioning. Treatment intensity was categorized as low, moderate, or high. Cross-informant moderation models tested hypothesized interactions., Results: Child-reported family functioning significantly interacted with diagnosis and treatment intensity in models of caregiver-reported QOL. More maladaptive family functioning was associated with reduced QOL for children with BT and moderately-intense treatments., Conclusions: Children with BT and moderate treatment intensities are sensitive to family functioning, highlighting an at-risk group to target for family-level intervention. Future work should evaluate these associations longitudinally.

Background/objectives: Survivors of pediatric brain tumors (SPBT) experience significant social challenges, including fewer friends and greater isolation than peers. Difficulties in face processing and visual social attention have been implicated in these outcomes. This study evaluated facial expression recognition (FER), social attention, and their associations with social impairments in SPBT., Methods: SPBT (N = 54; ages 7-16) at least 2 years post treatment completed a measure of FER, while parents completed measures of social impairment. A subset (N = 30) completed a social attention assessment that recorded eye gaze patterns while watching videos depicting pairs of children engaged in joint play. Social Prioritization scores were calculated, with higher scores indicating more face looking. Correlations and regression analyses evaluated associations between variables, while a path analysis modeling tool (PROCESS) evaluated the indirect effects of Social Prioritization on social impairments through emotion-specific FER., Results: Poorer recognition of angry and sad facial expressions was significantly correlated with greater social impairment. Social Prioritization was positively correlated with angry FER but no other emotions. Social Prioritization had significant indirect effects on social impairments through angry FER., Conclusion: Findings suggest interventions aimed at improving recognition of specific emotions may mitigate social impairments in SPBT. Further, reduced social attention (i.e., diminished face looking) could be a factor in reduced face processing ability, which may result in social impairments. Longitudinal research is needed to elucidate temporal associations between social attention, face processing, and social impairments., (© 2024 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.)

Objective: The Neurological Predictor Scale (NPS) quantifies cumulative exposure to tumor- and treatment-related neurological risks. The Pediatric Neuro-Oncology Rating of Treatment Intensity (PNORTI) measures the intensity of different treatment modalities, but research is needed to establish whether it is associated with late effects. This study evaluated the predictive validity of the NPS and PNORTI for neuropsychological outcomes in pediatric brain tumor survivors., Method: A retrospective chart review was completed of pediatric brain tumor survivors (PBTS) ( n = 161, M age = 13.47, SD = 2.80) who were at least 2 years from the end of tumor-directed treatment. Attention, intellectual functioning, perceptual reasoning, processing speed, verbal reasoning, and working memory were analyzed in relation to the NPS and PNORTI., Results: NPS scores ranged from 1 to 11 ( M = 5.57, SD = 2.27) and PNORTI scores ranged from 1 ( n = 101; 62.7%) to 3 ( n = 18; 11.2%). When controlling for age, sex, SES factors, and time since treatment, NPS scores significantly predicted intellectual functioning [ F (7,149) = 12.86, p < .001, R 2 = .38] and processing speed [ F (7,84) = 5.28, p < .001, R 2 = .31]. PNORTI scores did not significantly predict neuropsychological outcomes., Conclusions: The findings suggest that the NPS has value in predicting IF and processing speed above-and-beyond demographic variables. The PNORTI was not associated with neuropsychological outcomes. Future research should consider establishing clinical cutoff scores for the NPS to help determine which survivors are most at risk for neuropsychological late effects and warrant additional assessment.

Although external beam radiotherapy (xRT) is commonly used to treat central nervous system (CNS) tumors in patients of all ages, young children treated with xRT frequently experience life-altering and dose-limiting neurocognitive impairment (NI) while adults do not. The lack of understanding of mechanisms responsible for these differences has impeded the development of neuroprotective treatments. Using a newly developed mouse model of xRT-induced NI, we found that neurocognitive function is impaired by ionizing radiation in a dose- and age-dependent manner, with the youngest animals being most affected. Histologic analysis revealed xRT-driven neuronal degeneration and cell death in neurogenic brain regions in young animals but not adults. BH3 profiling showed that neural stem and progenitor cells, neurons, and astrocytes in young mice are highly primed for apoptosis, rendering them hypersensitive to genotoxic damage. Analysis of single-cell RNA sequencing data revealed that neural cell vulnerability stems from heightened expression of proapoptotic genes including BAX, which is associated with developmental and mitogenic signaling by MYC. xRT induced apoptosis in primed neural cells by triggering a p53- and PUMA-initiated, proapoptotic feedback loop requiring cleavage of BID and culminating in BAX oligomerization and caspase activation. Notably, loss of BAX protected against apoptosis induced by proapoptotic signaling in vitro and prevented xRT-induced apoptosis in neural cells in vivo as well as neurocognitive sequelae. On the basis of these findings, preventing xRT-induced apoptosis specifically in immature neural cells by blocking BAX, BIM, or BID via direct or upstream mechanisms is expected to ameliorate NI in pediatric patients with CNS tumor., Significance: Age- and differentiation-dependent apoptotic priming plays a pivotal role in driving radiotherapy-induced neurocognitive impairment and can be targeted for neuroprotection in pediatric patients., (©2023 The Authors; Published by the American Association for Cancer Research.)

Objective: The neural mechanisms contributing to the social problems of pediatric brain tumor survivors (PBTS) are unknown. Face processing is important to social communication, social behavior, and peer acceptance. Research with other populations with social difficulties, namely autism spectrum disorder, suggests atypical brain activation in areas important for face processing. This case-controlled functional magnetic resonance imaging (fMRI) study compared brain activation during face processing in PBTS and typically developing (TD) youth., Methods: Participants included 36 age-, gender-, and IQ-matched youth ( N = 18 per group). PBTS were at least 5 years from diagnosis and 2 years from the completion of tumor therapy. fMRI data were acquired during a face identity task and a control condition. Groups were compared on activation magnitude within the fusiform gyrus for the faces condition compared to the control condition. Correlational analyses evaluated associations between neuroimaging metrics and indices of social behavior for PBTS participants., Results: Both groups demonstrated face-specific activation within the social brain for the faces condition compared to the control condition. PBTS showed significantly decreased activation for faces in the medial portions of the fusiform gyrus bilaterally compared to TD youth, p s ≤ .004. Higher peak activity in the left fusiform gyrus was associated with better socialization ( r = .53, p < .05)., Conclusions: This study offers initial evidence of atypical activation in a key face processing area in PBTS. Such atypical activation may underlie some of the social difficulties of PBTS. Social cognitive neuroscience methodologies may elucidate the neurobiological bases for PBTS social behavior.

Background/objectives: Survivors of pediatric brain tumors are at increased risk for difficulties with social competence, including poor social information processing (SIP) and peer relationships. Improved survival rates heighten the need to better understand these challenges and if they are specific to survivors of pediatric brain tumors versus survivors of other childhood cancers., Methods: Fifty-one survivors of pediatric brain tumors and 34 survivors of pediatric solid tumors completed evaluations of SIP and peer relationship quality within six months of completing treatment and one year later. Caregivers completed a measure of social skills. Linear mixed models evaluated differences between survivors of pediatric brain and solid tumors on SIP and social skills and how indices of SIP were associated with peer relationships over time., Results: The two groups did not differ on indices of SIP or social skills over time. A three-way interaction between measures of SIP, group, and time predicted peer relationships. Survivors of pediatric solid tumors showed a positive association between baseline social skills and theory of mind and peer relationships over time, whereas survivors of pediatric brain tumors showed an inverse association between baseline social skills and theory of mind and peer relationships over time., Conclusion: Findings revealed unanticipated associations between baseline SIP and social skills and peer relationships over time among survivors of pediatric brain tumors. Additional research is needed to elucidate the factors most influential on peer relationships in this group to inform interventions., (© 2022 Wiley Periodicals LLC.)

Context: Individuals treated for pediatric craniopharyngioma, a rare, grade 1 brain tumor, frequently develop hypothalamic obesity, a complication often recalcitrant to intervention. Although hypothalamic obesity is known to adversely impact quality of life, less is known about how caregivers and patients experience this condition., Objective: Our goal was to examine the approaches that families take towards weight management and the impact on social function in individuals with craniopharyngioma and obesity. Individuals with craniopharyngioma without obesity were included as a comparison., Subjects and Methods: Adult caregivers of children <18y with craniopharyngioma completed a web-based survey posted by a patient advocacy organization between February and July 2020. Questions related to the child's diagnosis, medications, lifestyle modifications, and social function along with research priorities. Descriptive statistics were generated. Linear regression was used to assess the independent effects of obesity and other covariates on social function., Results: Of 106 respondents, 60 (57%) reported their child had obesity at the time of survey completion. In contrast, only 6 (5.7%) had obesity prior to craniopharyngioma diagnosis. A majority (92%) of those with obesity had tried limiting calories or carbohydrates; 31% and 69% found these helpful, respectively. Thirty-eight percent had tried weight loss medications (stimulants, metformin, GLP1R-agonists, and topiramate) and 48% found at least one helpful. Both stimulant and anti-depressant use were reported more frequently with obesity. An index (T-score) reflecting social function was lower in the cohort than a population reference, 41 (SD 11) vs. 50 (SD 10), p<0.001. In a linear model, both older age and obesity were independently associated with greater social impairment. Ninety-four percent of respondents caring for a child with obesity (and 79% of all respondents) identified "improving treatments and prevention for hypothalamic obesity" as a key research priority., Conclusions: Only a minority of individuals with hypothalamic obesity had trialed medication, even though many reported that lifestyle modification was inadequate. Furthermore, social function was significantly impaired overall in survivors compared to a reference cohort, and even more so in individuals with obesity. These findings highlight the opportunity to improve social functioning as an additional potential benefit of improved treatments for hypothalamic obesity., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Craven, Crowley, Chiang, Kline, Malbari, Hocking and McCormack.)

Objective: Family characteristics influence children's adaptation following a cancer diagnosis. Little is known about the importance of family relationships on children's social and emotional health immediately after treatment completion. In this study, we identify subtypes of family relationships and evaluate how these profiles relate to child adjustment upon treatment completion., Methods: Youth (N = 77; ages 7-14) who completed cancer treatment within the past 7 months provided their perceptions of their relationships with their caregivers and siblings. Caregivers and teachers rated participants' internalizing and externalizing symptoms, while participants and caregivers reported on child social and overall functioning. Latent profile analyses identified patterns of family relationships, and we examined associations between these patterns and youth outcomes., Results: A four-profile solution best characterized families as (1) low closeness/high sibling-only discord (12.4%); (2) low closeness/high discord (6.6%); (3) high closeness/low discord (47.6%); and (4) moderate closeness/moderate discord (33.4%). Family relationship profiles were differentially associated with self, caregiver, and teacher ratings of adaptation. Participants from families characterized by low closeness/high discord reported more difficulties with peer interactions than participants with high closeness/low discord in their families. Caregivers and teachers reported significantly higher externalizing symptoms for participants from low closeness/high discord and low closeness/high sibling discord families in comparison to participants with high closeness/low discord in their family., Conclusions: Findings underscore the importance of assessing children's perceptions of family relationships in pediatric oncology and providing support to the family during and after treatment. Future directions include assessing how these profiles predict outcomes over time., (© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Objective: Pediatric brain tumor survivors (PBTS) experience deficits in social functioning. Facial expression and identity recognition are key components of social information processing and are widely studied as an index of social difficulties in youth with autism spectrum disorder (ASD) and other neurodevelopmental conditions. This study evaluated facial expression and identity recognition among PBTS, youth with ASD, and typically developing (TD) youth, and the associations between these face processing skills and social impairments., Methods: PBTS (N = 54; ages 7-16) who completed treatment at least 2 years prior were matched with TD (N = 43) youth and youth with ASD (N = 55) based on sex and IQ. Parents completed a measure of social impairments and youth completed a measure of facial expression and identity recognition., Results: Groups significantly differed on social impairments (p < .001), with youth with ASD scoring highest followed by PBTS and lastly TD youth. Youth with ASD performed significantly worse on the two measures of facial processing, while TD youth and PBTS were not statistically different. The association of facial expression recognition and social impairments was moderated by group, such that PBTS with higher levels of social impairment performed worse on the expression task compared to TD and ASD groups (p < .01, η2 = 0.07)., Conclusions: Variability in face processing may be uniquely important to the social challenges of PBTS compared to other neurodevelopmental populations. Future directions include prospectively examining associations between facial expression recognition and social difficulties in PBTS and face processing training as an intervention for PBTS., (© The Author(s) 2021. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Competing Interests: Karin S. WalshHonoraria: Novo NordiskConsulting or Advisory Role: Novo Nordisk, SpringworksResearch Funding: Novo NordiskTravel, Accommodations, Expenses: Novo Nordisk Kristina K. HardyEmployment: BayerHonoraria: BayerSpeakers' Bureau: BayerTravel, Accommodations, Expenses: BayerNo other potential conflicts of interest were reported.

Objective: The transition from active cancer treatment to survivorship represents a period of uncertainty for youth and their families, but factors associated with adaptation during this period are understudied. We evaluated associations among cancer and treatment-related variables, family factors (family functioning, caregiver health-related quality of life [HRQL], and caregiver distress), and patient HRQL after treatment completion. We assessed the indirect effects of neurocognitive difficulties on youth HRQL through family factors., Methods: One hundred fifty-four caregivers (of patients' ages 0-18 years) and 52 youth (ages 7-18 years) completed questionnaires assessing family factors, neurocognitive difficulties, and HRQL for patients within 6 months following treatment completion. Electronic health records were reviewed for cancer and treatment-related information. Bootstrapping analyses assessed whether neurocognitive function had indirect effects on HRQL through family factors., Results: Family factors were associated with self- and caregiver reports of children's HRQL. Controlling for demographic, cancer, and treatment covariates, caregiver reports of their child's neurocognitive difficulties had an indirect effect on their reports of child physical HRQL through family functioning. Caregiver reports of their child's neurocognitive difficulties indirectly related to caregiver reports of child psychosocial HRQL through family functioning and caregiver HRQL. Indirect effects for self-reported neurocognitive difficulties and HRQL were not supported., Conclusions: Findings highlight the need for routine psychosocial screening for youth and caregiver reports of family adjustment and HRQL during the transition off treatment. Providers are encouraged to offer interventions matched to specific needs for families at risk for poor family functioning to improve patient outcomes as they transition off treatment., (© 2020 John Wiley & Sons Ltd.)

Survivors of childhood cancer may be at risk of experiencing pain, and a systematic review would advance our understanding of pain in this population. The objective of this study was to describe: 1) the prevalence of pain in survivors of childhood cancer, 2) methods of pain measurement, 3) associations between pain and biopsychosocial factors, and 4) recommendations for future research. Data sources for the study were articles published from January 1990 to August 2019 identified in the PubMed, PsycINFO, EMBASE, and Web of Science data bases. Eligible studies included: 1) original research, 2) quantitative assessments of pain, 3) articles published in English, 4) cancers diagnosed between birth and age 21 years, 5) survivors at 5 years from diagnosis and/or at 2 years after therapy completion, and 6) a sample size >20. Seventy-three articles were included in the final review. Risk of bias was considered using the Cochrane risk of bias tool. The quality of evidence was evaluated according to Grading of Recommendations Assessment Development and Evaluation (GRADE) criteria. Common measures of pain were items created by the authors for the purpose of the study (45.2%) or health-related quality-of-life/health status questionnaires (42.5%). Pain was present in from 4.3% to 75% of survivors across studies. Three studies investigated chronic pain according the definition in the International Classification of Diseases. The findings indicated that survivors of childhood cancer are at higher risk of experiencing pain compared with controls. Fatigue was consistently associated with pain, females reported more pain than males, and other factors related to pain will require stronger evidence. Theoretically grounded, multidimensional measurements of pain are absent from the literature., (© 2020 American Cancer Society.)

Objective: The etiology of pediatric brain tumor survivor (PBTSs) social difficulties is not well understood. A model of social competence for youth with brain disorder and evidence from youth with autism spectrum disorder (ASD) suggests that diminished social attention may underlie social deficits in PBTSs. This study used eye tracking technology to compare visual social attention in PBTSs, youth with ASD, and typically developing (TD) youth., Methods: Participants included 90 age-, gender-, and IQ-matched youth ( N = 30 per group). PBTSs were at least 5 years from diagnosis and 2 years from the completion of tumor-directed therapy. Participants' eye gaze patterns were recorded while watching an established social play paradigm that presented videos of children engaging in either interactive or parallel play. Group differences in proportional gaze duration toward social versus nonsocial areas of interest were compared. Medical correlates of social attention in PBTSs were evaluated., Results: Groups significantly differed in gaze preference across conditions, with PBTSs looking less at social areas of interest than TD youth and in a manner comparable to youth with ASD. Among PBTSs, multimodal tumor-directed therapy was associated with reduced gaze preference for faces., Conclusions: This study provides the first evidence of disrupted social attention in PBTSs, with parallels to the social attention deficits observed in ASD. Findings offer a new way to conceptualize the social difficulties of PBTSs and could guide interventions aimed at improving PBTS social adjustment by increasing visual attention to socially relevant information during social interactions. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

Objective: Brain tumors during childhood may disrupt the development and maintenance of friendships due to the impact of disease- and treatment-related factors on functioning. The goal of this study was to determine if children treated for either a brain tumor or a non-central nervous system (CNS) solid tumor could name a friend and to evaluate the social information processes associated with the ability to name a friend., Method: Youth (ages 7-14) treated for either a brain tumor (n = 47; mean age = 10.51 years) or a non-CNS solid tumor (n = 34; mean age = 11.29) completed an assessment within 6 months of the conclusion of treatment that included asking participants to name a friend and completing measures of social information processing (SIP). Rates of self-reported friendship were compared between groups and correlates of being able to name a friend were evaluated., Results: Youth treated for a brain tumor (61.7%) were significantly less likely to name a friend compared with youth treated for a non-CNS solid tumor (85.3%). Diagnosis type (brain vs. non-CNS), relapse status, attribution style, and facial affect recognition were significant predictors of being able to name a friend or not in a logistic regression model., Conclusions: Youth treated for a brain tumor and those who experienced a disease relapse are at risk for impairments in friendships; difficulties with SIP may increase this risk. Targeted screening and intervention efforts for children diagnosed with brain tumors and those who have relapsed could address difficulties with peers., (© The Author(s) 2020. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Purpose: Improved therapies for pediatric central nervous system (CNS) tumors have increased survival rates; however, many survivors experience significant long-term functional limitations. Survivors of pediatric CNS tumors can experience deficits in social attainment. The aim of this review was to systematically amalgamate findings pertaining to social attainment (i.e., educational attainment, marriage, employment outcomes) in survivors of pediatric CNS tumors., Methods: PubMed (web-based), PsycINFO (EBSCO), EMBASE (Ovid), and Web of Science (Thomson Reuters) were used to identify articles published between January 2011 and September 2018. Eligible studies reported outcomes for survivors of pediatric CNS tumors diagnosed before age 21 years and > 5 years from diagnosis and/or > 2 years off therapy. All data were independently abstracted by two reviewers. Random-effects meta-analyses were performed using Review Manager 5.0., Results: The search yielded 7021 unique publications. Forty-six were included in the current review. Meta-analyses revealed survivors of CNS tumors were significantly more likely to have completed compulsory education only (OR = 1.87, 95% CI = 1.66, 2.12, p < 0.00001), less likely to be married (OR = 4.70, 95% CI = 3.89, 5.68, p < 0.00001), and more likely to be unemployed (OR = 2.84, 95% CI = 2.62, 3.08, p < 0.00001) compared to non-cancer controls. Cranial radiation therapy, neurocognitive deficits, and younger age at diagnosis were associated with poorer outcomes. Hearing loss and bilateral blindness were also related to poorer outcomes. Sex did not impact social attainment outcomes., Conclusions: Survivors of pediatric CNS tumors are at elevated risk for poor attainment of key adult social outcomes., Implications for Cancer Survivors: There is a critical need to develop interventions to support survivors in becoming independent and productive adults.

Objective: To evaluate the feasibility and acceptability of computerized working memory training in pediatric brain tumor survivors (PBTS) with cognitive deficits, as well as computerized working memory training that is enhanced with parental problem-solving skills training (PSST)., Methods: Twenty-seven PBTS (ages 7-16) recruited from a large, tertiary academic medical center were randomly assigned to computerized working memory training (Standard; n = 14) or computerized working memory training plus PSST (Combined; n = 13). PBTS completed a baseline assessment and parents completed acceptability surveys. Primary outcomes included number of intervention sessions completed and acceptability ratings., Results: Fourteen of the 27 participants completed at least 20 sessions of the computerized training with average sessions lasting over an hour (M = 68.42 min, SD = 14.63). Completers had significantly better baseline auditory attention abilities than noncompleters. Parents reported both frustration and satisfaction related to the interventions and identified barriers to completing intervention sessions., Conclusions: This pilot randomized clinical trial raises significant questions related to the feasibility of computerized working memory training in PBTS with cognitive deficits. Findings also offer considerations for integrating family-based treatment approaches into cognitive remediation interventions for PBTS., (© The Author(s) 2019. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Purpose: Survivors of pediatric brain tumors often have neurodevelopmental late effects, such as inattention. Symptoms may mirror those of attention-deficit/hyperactivity disorder (ADHD), which affects ~ 5-8% of the general population. This retrospective study of survivors followed at a large tertiary care center examined the prevalence of a clinical diagnosis of ADHD, and risk factors associated with ADHD diagnosis and ADHD-related medication use., Methods: A retrospective chart review of brain tumor survivors (n = 528), diagnosed between 2000 and 2015, who were at least 6 years old and 2 years from the end of tumor-directed therapy or from diagnosis, if no interventions were received. Clinical and demographic data were extracted from the medical record., Results: Survivors were 55.7% male with mean age 8.15 ± 4.4 (0.0-16.0) years at brain tumor diagnosis. The most common diagnoses were low-grade glioma, medulloblastoma, and craniopharyngioma, with 52.5% of tumors supratentorial. Of the survivors, 81.3% received surgery, 40.0% radiation therapy, and 36.6% chemotherapy. Sixty-nine survivors (13.1%) had ADHD diagnoses, 105 (19.9%) had symptoms of ADHD without diagnoses, and 64 (12.1%) had ADHD medication use. ADHD diagnosis was associated with younger age at tumor diagnosis (p = 0.05) and supratentorial tumor location (p = 0.001). ADHD diagnosis was not associated with gender, tumor type, or treatment type., Conclusions: Survivors of brain tumors are at increased risk of ADHD and related symptoms. The greatest increase in risk occurs for survivors with diagnoses at younger ages and supratentorial tumors. Additional research is warranted, as select survivors may benefit from behavioral or pharmacologic ADHD treatments to optimize functioning.

Objective: To examine the psychometric properties of the Patient-Reported Outcomes Measurement Information System (PROMIS®) peer relationships short form (PR-SF), including association with peer-reported friendships, likeability, and social reputation., Method: 203 children (Mage = 10.12 years, SD = 2.37, range = 6-14) in Grades 1-8 completed the 8-item PR-SF and friendship nominations, like ratings, and social reputation measures about their peers during 2 classroom visits approximately 4 months apart, as part of a larger study. A confirmatory factor analysis, followed by an exploratory factor analysis, was conducted to examine the factor structure of the PR-SF. Spearman correlations between the PR-SF and peer-reported outcomes evaluated construct validity., Results: For the PR-SF, a 2-factor solution demonstrated better fit than a 1-factor solution. The 2 factors appear to assess friendship quality (3 items) and peer acceptance (5 items). Reliability was marginal for the friendship quality factor (.66) but adequate for the acceptance factor (.85); stability was .34 for the PR-SF over 4 months. The PR-SF (8 items) and acceptance factor (5 items) both had modest but significant correlations with measures of friendship (rs = .25-.27), likeability (rs = .21-.22), and social reputation (rs = .29-.44)., Conclusions: The PR-SF appears to be measuring two distinct aspects of social functioning. The 5-item peer acceptance scale is modestly associated with peer-reported friendship, likeability, and social reputation. Although not a replacement for peer-reported outcomes, the PR-SF is a promising patient-reported outcome for peer relationships in youth.

Background: The objective of this study was to examine prospectively the associations between family functioning at the end of tumor-directed treatment and the health-related quality of life (HRQL) of pediatric brain tumor survivors (PBTSs) approximately 9 months later., Procedure: Thirty-five PBTS (age 6-16 years) and their mothers completed measures of family functioning and survivor HRQL within 5 months of completing tumor-directed therapy (baseline) and again approximately 9 months later (follow-up)., Results: Survivor-rated general family functioning at baseline significantly predicted mother proxy- and self-reported survivor HRQL at follow-up when controlling for survivor HRQL at baseline and relevant demographic and treatment-related variables., Conclusions: Family functioning is a key factor contributing to survivor HRQL and should be screened throughout the course of tumor-directed treatment. Psychosocial interventions directed toward improving general family functioning may improve survivor well-being following the completion of treatment., (© 2018 Wiley Periodicals, Inc.)

Childhood cancer challenges academic success and school engagement, yet little research has described these hardships. This study documented parental perspectives of the educational barriers and unmet needs of youth treated for cancer ( n = 102). Treatment-related physical sequelae were noted as common problems interfering with school attendance and engagement. One-fourth of parents reported worse academic performance since diagnosis; however, many never had their child evaluated (63.3%) or enacted formalized educational accommodations (55%). Findings reflect educational challenges across the continuum of cancer care and survivorship, and highlight the importance of education of school staff on both acute and long-term effects of cancer treatment.

Measures of treatment intensity for childhood cancer are needed in research in order to control for variability in treatments. Existing measures of treatment intensity for childhood cancers do not reflect the complexities of treatment protocols for central nervous system (CNS) tumors. This paper describes the development of the Pediatric Neuro-Oncology Rating of Treatment Intensity (PNORTI). PNORTI development occurred in three phases. Phase 1: five experts in pediatric neuro-oncology created a 5-point scale of treatment intensity and 42 pediatric neuro-oncology providers completed a three-part online questionnaire to evaluate the classification system and apply the rating system to 16 sample patients. Validity was determined by respondents classifying therapy modalities into intensity levels. Inter-rater reliability was calculated from ratings of the 16 sample patients. Phase 2: three experts revised the PNORTI based on survey results and 18 pediatric neuro-oncology providers evaluated the classification system. Phase 3: ten experts in pediatric neuro-oncology refined and finalized the PNORTI and rated 10 sample patients using the PNORTI. Agreement between median ratings of the survey respondents and criterion raters for chemotherapy intensity (r's = .82 and 1.0) and overall treatment intensity level (r's = .91 and .94) were high in Phases 1 and 2. Inter-rater reliability also was very high when using the PNORTI to classify the 16 sample patients in Phase 1 (median agreement of r = .93 and rICC = .99) and the 10 sample patients in Phase 3 (median agreement of r = .92 and rICC = .98). The PNORTI is a valid and reliable method for classifying the intensity of different treatment modalities used in pediatric neuro-oncology.

ᅟ: Pediatric brain tumor survivors are at risk for significant difficulties related to social competence. Little research has examined factors that contribute to survivor social problems., Purpose: The current study is grounded in a model of social competence for youth with brain disorder and used qualitative and quantitative methods to obtain caregiver perspectives on survivor social competence and identify pertinent risk and resistance factors., Methods: The study occurred in two phases, including focus groups with 36 caregivers of 24 survivors and confirmatory interviews with 12 caregivers of 12 survivors., Results: Qualitative content analyses resulted in three themes that were illustrative of the model of social competence. Themes included (1) the impact of survivor sequelae on social function; (2) the role of family in evaluating and promoting survivor social development; and (3) the match between the survivor's social context and developmental needs. Quantitative data supported the associations between survivor social skills, survivor executive function, and family functioning., Conclusions: Overall, findings underscore the influence of risk and resistance factors across different systems on survivor social competence and suggest directions for future research and intervention efforts.

Background: Reports of acceptability of psychosocial screening are limited, and the utility of screening in identifying risk factors for health-related quality of life (HRQL) of children with cancer has not been established. This study aimed to assess acceptability of screening for parents and evaluate associations between family risk factors and patient HRQL in the first year post-diagnosis., Procedure: Sixty-seven parents of children with cancer completed the Psychosocial Assessment Tool (family risk), Distress Thermometer (caregiver distress), Posttraumatic Stress Disorder Checklist-Civilian 6 (caregiver traumatic stress), PedsQL 4.0 (parent-proxy report of patient HRQL) and four acceptability questions via a tablet (iPad)., Results: Patients (Mage = 9.5 SD = 5.5 years) were equally distributed across major pediatric cancer diagnoses. The majority of parents endorsed electronic screening as acceptable (70%-97%). Patient gender, diagnosis, intensity of treatment and time since diagnosis were not significantly correlated with family risk, caregiver distress, traumatic stress, or patient HRQL. The full regression model predicting total HRQL was significant (R 2  = .42, F(4,64) = 10.7, p = .000). Age (older) was a significant covariate, family risk and caregiver distress were significant independent predictors of poorer total HRQL. The full regression models for physical and psychosocial HRQL were significant; age and caregiver distress were independent predictors of physical HRQL, and age and family risk were independent predictors of psychosocial HRQL., Conclusions: Screening is acceptable for families and important for identifying risk factors associated with poorer patient HRQL during childhood cancer treatment. Targeted interventions addressing family resource needs as well as parent distress identified through screening may be effective in promoting patient HRQL. Copyright © 2016 John Wiley & Sons, Ltd., (Copyright © 2016 John Wiley & Sons, Ltd.)

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).

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.

Pediatric brain tumor (BT) survivors are at risk for psychosocial late effects across many domains of functioning, including neurocognitive and social. The literature on the social competence of pediatric BT survivors is still developing and future research is needed that integrates developmental and cognitive neuroscience research methodologies to identify predictors of survivor social adjustment and interventions to ameliorate problems. This review discusses the current literature on survivor social functioning through a model of social competence in childhood brain disorder and suggests future directions based on this model. Interventions pursuing change in survivor social adjustment should consider targeting social ecological factors., (© 2014 Wiley Periodicals, Inc.)

Purpose: Childhood brain tumor (BT) survivors experience significant neurocognitive sequelae that affect health-related quality of life (HRQOL). A model of neurodevelopmental late effects and family functioning in childhood cancer survivors suggests associations between survivor neurocognitive functioning, family functioning, and survivor HRQOL. This study examines the concurrent associations between survivor neurocognitive functioning, family functioning, and survivor emotional HRQOL, and the indirect effects of neurocognitive functioning on survivor emotional HRQOL through family functioning., Methods: Participants included young adult-aged childhood BT survivors (18-30 years old; N=34) who were on average 16 years post-diagnosis, and their mothers. A brief neuropsychological battery assessed working and verbal memory, processing speed, and executive functioning. Survivors and mothers completed measures of family functioning, and mothers completed a proxy-report measure of survivor HRQOL., Results: Spearman bivariate correlations examined the associations between indices of survivor neurocognitive functioning and concurrent family functioning and survivor emotional HRQOL. Poorer survivor processing speed, working memory, verbal memory, and executive function were significantly associated with worse survivor- and mother-reported family functioning (r's range: 0.36-0.58). Additionally, worse survivor processing speed and executive function were significantly associated with poorer survivor emotional HRQOL (r's range: 0.44-0.48). Bootstrapping analyses provided evidence for the indirect effects of neurocognitive functioning on survivor emotional HRQOL through family functioning., Conclusion: These findings suggest that family functioning is an important variable that might mitigate the negative influence of neurocognitive late effects on survivors and is a potential target in future interventions.

Family-based interventions in pediatric cancer face challenges associated with integrating psychosocial care into a period of intensive treatment and escalating stress. Little research has sought input from parents on the role of interventions delivered shortly after diagnosis. This mixed-methods study obtained parents' perspectives on the potential role of family-based interventions. Twenty-five parents provided feedback on the structure and timing of psychosocial interventions via focus groups and a questionnaire. Qualitative analyses resulted in three themes that were illustrative of a traumatic stress framework: (1) tension between focusing on child with cancer and addressing other family needs, (2) factors influencing parents' perception of a shared experience with other parents, and (3) the importance of matching interventions to the trajectory of parent adjustment. Quantitative data indicated that parents preferred intervention within 6 months of diagnosis, with almost half favoring within 2 months of diagnosis, and the majority wanted interventions targeted to parents only. Qualitative themes highlight the importance of using a traumatic stress framework to inform the development of family-based interventions for those affected by pediatric cancer.

Purpose: Parents often accompany adolescent and young adult (AYA) pediatric cancer survivors to follow-up oncology clinic visits and remain involved in their care, although little is known about their reasons for doing so., Method: This mixed methods (qualitative-quantitative) study of 76 mothers of AYA survivors of childhood cancer uses content analysis and logistic regression to identify and explore reasons mothers provided for coming to the visit. Demographic and treatment data are examined as potentially explanatory factors., Results: Ten reasons (in decreasing order of frequency) were derived: Concern for Child's Health and Well-Being, Practical Support, Transportation, Familial Experience, General Support, Companionship, Personal Interest in Follow-up Care, Characteristics of their Child, Emotional Support, and Parental Duty. The reasons were not related to demographic or treatment factors., Conclusion: Mothers accompany AYAs to survivorship clinic for both maternal/family-focused and survivor-focused reasons that can be incorporated in survivorship and transition care to reflect ongoing communications among survivors, parents, and health care teams.

Background: This study compares young adult survivors of childhood cancer (YASCC) and young adults without a history of serious illness/injury on physical activity levels and examines psychological predictors of physical activity in survivors over a 2-month period., Procedure: YASCC participants (n = 117) and healthy controls (n = 148), ages 18-30, recruited during cancer survivorship clinic or primary care clinics completed self-report measures of physical activity, health problems, psychological distress, and health beliefs (Health Perceptions, Satisfaction with Healthcare, Cognitive Competence, and Autonomy). Survivorship providers completed ratings of health problems and treatment intensity for survivors., Results: Survivors had significantly lower levels of physical activity than controls. Family income, survivor-reported health problems and less positive health beliefs were associated with lower rates of physical activity. Provider-reported survivor health problems and ratings of cancer treatment intensity were not related to survivor physical activity. Less positive survivor beliefs about their cognitive competence predicted survivor physical activity 2 months later after accounting for other pertinent demographic, medical and psychological variables., Conclusions: YASCC were significantly less active than healthy controls. YASCC with more self-identified health problems and negative beliefs about their cognitive competence were less physically active. Beliefs about their health and cognitive competencies may be viable areas for assessment and intervention in order to promote increased engagement in physical activity., (Copyright © 2012 Wiley Periodicals, Inc.)

Background: We previously developed a reliable and valid method for classifying the intensity of pediatric cancer treatment. The Intensity of Treatment Rating Scale (ITR-2.0) 1 classifies treatments into four operationally defined levels of intensity and is completed by pediatric oncology specialists based on diagnosis, stage, and treatment data from the medical record. Experience with the ITR-2.0 and recent changes in treatment protocols indicated the need for a minor revision and revalidation., Methods: Five criterion raters reviewed the prior items, independently proposing additions and/or changes in the classification of diseases/treatments. Subsequent to a group discussion of the proposed changes, a revised 43-item ITR was evaluated. Pediatric oncologists (n = 47) completed a two-part online questionnaire. Validity of the classifications was determined by the oncologists classifying each disease/treatment into one of the four levels of intensity. Inter-rater reliability was calculated by having each oncologist classify the treatments of 12 sample patients using the new version which we call the ITR-3., Results: Agreement between median ratings of the 43 items for the pediatric oncologists and the criterion raters was high (r = 0.88). The median of the raters was either identical (81%) with the criterion ratings or discrepant by one level. Inter-rater reliability was very high when using the ITR-3 to classify 12 sample patients, with a median agreement of 0.90 and an intraclass correlation coefficient (r(ICC) = 0.86)., Conclusions: With these minor modifications and updates, the ITR-3 remains a reliable and valid method for classifying pediatric oncology treatment protocols., (Copyright © 2011 Wiley Periodicals, Inc.)

In addition to the potential for ongoing health concerns, adolescent and young adult (AYA) childhood cancer survivors frequently report posttraumatic stress symptoms (PTSS). The current study examines whether beliefs about health moderate the relationship between the number of health problems and PTSS 2 months later in 140 survivors. Beliefs, as measured by scales of the Health Competence Beliefs Inventory (HCBI), negatively related to PTSS while health problems positively related to PTSS. Three scales of the HCBI-health perceptions, satisfaction with healthcare and cognitive competence--were significant moderators. The relationship between health problems and PTSS was stronger in the presence of less adaptive beliefs. These beliefs represent potentially malleable intervention targets for reducing PTSS in childhood cancer survivors.

Purpose: The goal of this study was to identify profiles of young adult (YA)-aged cancer survivors' beliefs about their health and well-being. Survivors' beliefs and their associated psychosocial and demographic characteristics may be clinically useful in survivorship care. Patients and methods: YA survivors of pediatric leukemias ( n =51), lymphomas ( n =24), and solid tumors ( n =44), aged 18-29 years old ( N =119), were categorized using cluster analysis based on their responses to the Health Competence Beliefs Inventory, a measure assessing beliefs about their health, satisfaction with healthcare, autonomy, and cognitive competence. Profiles of beliefs generated by cluster analysis were examined using self-report measures of health problems, distress, demographics, and provider-reported health problems and cancer treatment intensity. Results: Three distinct clusters were identified: Adaptive ( n =54), Low Autonomy ( n =25), and Vulnerable ( n =40). Adaptive survivors had positive beliefs, low distress, and minimal health problems. The Low Autonomy survivors were similar to those in the Adaptive cluster except they had low autonomy beliefs and the majority reported living with their parents. The Vulnerable cluster had more negative beliefs, the most medical problems, and the highest levels of distress. Conclusion: Health competence belief profiles identified unique subsets of YA survivors of pediatric cancer that have potentially distinct risk factors. Categorizing survivors by health belief patterns may help healthcare providers treat and educate their patients in ways that are tailored to individual survivors' needs and risks.

Many childhood brain tumor survivors experience significant neurocognitive late effects across multiple domains that negatively affect quality of life. A theoretical model of survivorship suggests that family functioning and survivor neurocognitive functioning interact to affect survivor and family outcomes. This paper reviews the types of neurocognitive late effects experienced by survivors of pediatric brain tumors. Quantitative and qualitative data from three case reports of young adult survivors and their mothers are analyzed according to the theoretical model and presented in this paper to illustrate the importance of key factors presented in the model. The influence of age at brain tumor diagnosis, family functioning, and family adaptation to illness on survivor quality of life and family outcomes is highlighted. Future directions for research and clinical care for this vulnerable group of survivors are discussed.

Objective: How screening for psychosocial risk in pediatric oncology may relate to the number and type of psychosocial services provided is a critical step in linking screening with treatment. We predicted that screening at diagnosis would be associated with the delivery of more psychosocial services over 8 weeks and that these services would be consistent with Universal, Targeted, or Clinical psychosocial risk level based on the Pediatric Psychosocial Preventative Health Model (PPPHM)., Methods: Parents of children newly diagnosed with cancer received either the Psychosocial Assessment Tool (PAT; n = 49) or psychosocial care as usual (PAU; n = 47), based on their date of diagnosis and an alternating monthly schedule. Medical record review and surveys completed by social workers and child life specialists were used to determine psychosocial services provided to patients and their families over the first eight weeks of treatment., Results: As predicted, families in the PAT condition received more services than those in PAU based on social worker and child life specialist report and medical record review. Within the PAT group, families at the Targeted and Clinical levels of risk received more intensive services than those at the Universal level., Conclusions: This initial report shows how psychosocial risk screening may impact psychosocial care in pediatric cancer, supporting the importance of screening as well as matching services to risk level., (Copyright © 2011 John Wiley & Sons, Ltd.)

Background: To investigate the feasibility of integrating an evidence-based screening tool of psychosocial risk in pediatric cancer care at diagnosis., Methods: Parents of children newly diagnosed with cancer received either the Psychosocial Assessment Tool (PAT; n=52) or psychosocial care as usual (n=47; PAU), based on their date of diagnosis and an alternating monthly schedule. Time to completion of the PAT, time to communication of PAT results to clinical care teams, distribution of PAT risk scores, and identification of psychosocial risks in the medical record were examined., Results: Of families receiving the PAT, 88% completed it within 48 hours. PAT was scored and results communicated within 48 hours in 98% of cases. Most families (72%) were classified as Universal risk based on the underlying Pediatric Psychosocial Preventative Health Model, 24% were classified as Targeted risk, and 4% scored in the Clinical range. Significantly more psychosocial risks were recorded in the medical record during PAT intervals than during PAU., Conclusions: An evidence-based psychosocial screener is feasible in pediatric oncology care and is associated with documentation of psychosocial risks in the medical record. Although the majority of families report low levels of psychosocial risk, about one-quarter report problems.

This review paper examines the literature on psychosocial factors associated with adjustment to sickle cell disease and insulin-dependent diabetes mellitus in children through the framework of the transactional stress and coping (TSC) model. The transactional stress and coping model views adaptation to a childhood chronic illness as mediated by several psychosocial factors. This review examines the utility of the model in explaining adjustment in two different childhood diseases, identifies needed research and intervention targets, as well as highlights potential changes to the model. The major conclusions of this review suggest that, in addition to child-specific factors, family functioning is an area that interventions should address in sickle cell disease and insulin-dependent diabetes mellitus.