Impaired neurocognitive functioning 3 months following diagnosis of high-risk acute lymphoblastic leukemia: A report from the Children's Oncology Group.

PURPOSE: Acute lymphoblastic leukemia (ALL) is the most common pediatric cancer diagnosis. Cognitive late effects develop in 20%-40% of ALL survivors, but the course of declines is unclear. The aim of this paper is to characterize cognitive functioning, and its association with patient-reported outcomes, early in treatment. PATIENTS AND METHODS: A total of 483 children with high-risk ALL, aged 6-12 years at diagnosis, consented to the neurocognitive study embedded in a prospective therapeutic trial, Children's Oncology Group (COG) AALL1131. A computerized neurocognitive battery (Cogstate) was administered 3 months post diagnosis assessing reaction time, visual attention, working memory, visual learning, and executive functioning. Parent-reported executive functioning and patient-reported physical symptoms were also collected. RESULTS: Data from 390 participants (mean age at diagnosis = 9.2 years, 55.4% male) were obtained. Relatively few patients reported pain (16.0%) or nausea (22.6%), but a majority (68.5%) reported feeling at least some fatigue at testing. Mean Cogstate Z-scores were within normal limits across tasks; however, rates of impairment (Z-scores ≤ -1.5) for reaction time, working memory, visual learning, and visual attention were all higher than expected compared to the standardization sample. Patients reporting fatigue were significantly more likely to have impaired reaction time and visual attention compared to those reporting no fatigue. CONCLUSION: Findings support feasibility of computerized cognitive assessments and suggest higher-than-expected rates of impaired cognitive performance early during treatment for pediatric ALL, notably within 3 months of diagnosis, suggesting intervention efforts may be indicated. These results also highlight acute factors that may impact reliability of "baseline" assessments conducted soon after diagnosis.

Emotional Well-Being of Pediatric Brain Tumor Survivors and Comparison Peers: Perspectives From Children and Their Parents.

OBJECTIVE: The aim of this study was to examine the emotional well-being of pediatric brain tumor survivors (PBTS) from the perspective of children's self-reports and parents' reports relative to matched comparison peers (COMP) and their parents. It was hypothesized that PBTS would self-report more depression symptoms, loneliness, and lower self-concept than COMP. We also hypothesized that mothers and fathers of PBTS would report more internalizing symptoms and lower total competence for their children. Age and sex effects were examined in exploratory analyses. METHODS: Families of 187 PBTS and 186 COMP participated across 5 sites. Eligible children in the PBTS group were 8-15 years of age and 1-5 years post-treatment for a primary intracranial tumor without progressive disease. COMP were classmates matched for sex, race, and age. RESULTS: PBTS self-reported lower scholastic, athletic, and social competence, but not more depression, loneliness, or lower global self-worth than COMP. Parents of PBTS reported more internalizing symptoms and lower total competence than parents of COMP. With few exceptions, group differences did not vary as a function of child age and sex. CONCLUSION: PBTS reported diminished self-concept in scholastic, athletic, and social domains, while their parents reported broader challenges with internalizing symptoms and total competence. Discrepancies between self-report and parent report require further study to inform targeted interventions for PBTS. Screening survivors for emotional challenges in follow-up clinic or in school setting may help with the allocation of psychosocial support and services for PBTS and their families.

Measuring LEND Core Competencies Using Trainee Follow-Up Surveys.

OBJECTIVES: Measuring the value-added impact of Leadership Education in Neurodevelopmental Disabilities and Related Disorders (LEND) training on trainees' leadership and career trajectories is necessary to understand program efficacy. In the current study, we leveraged an existing ex post facto design to develop and test a new measure of LEND competencies and compare outcomes of LEND trainees and comparison peers. METHODS: We developed the LEND Outcomes Follow-Up Survey using a multi-step, mixed methods process. A series of focus groups and consultations with key stakeholders identified eight important LEND leadership outcomes: (1) interdisciplinary work; (2) advocacy; (3) intersectional approach; (4) systems perspective; (5) life course perspective; (6) leadership; (7) engagement with maternal and child health populations; and (8) research experience. We developed and piloted this novel survey to measure these LEND leadership outcomes. We used data collected from this novel measure and an existing survey that is used nationally by LEND, to compare the outcomes of 43 LEND trainees and 30 comparison peers at two years post completion of LEND training. RESULTS: We found that, compared to comparison peers, LEND trainees: (1) worked with a greater number of disciplines; (2) were more likely to be engaged in advocacy; (3) were more likely to utilize a systems perspective in their work; (4) were more likely to work with maternal and child health populations; and (5) were more likely to have experience conducting research. CONCLUSIONS: Our findings suggested that LEND training improves LEND leadership outcomes at two years post-completion of LEND training.

Dissemination of an evidence-based behavioral intervention to alleviate distress in caregivers of children recently diagnosed with cancer: Bright IDEAS.

BACKGROUND: Four multisite randomized clinical trials of > 1400 caregivers of children newly diagnosed with cancer showed that the Bright IDEAS (BI) paradigm of problem-solving skills training is an acceptable and efficacious approach to alleviating the high levels of distress they experience. To facilitate providing evidence-based caregiver support as recommended in the pediatric oncology standards of care, the project described here was designed to disseminate BI to 200 psychosocial professionals. PROCEDURE: We partnered with the Children's Oncology Group (COG), Association of Pediatric Oncology Social Workers (APOSW), Association of Pediatric Hematology/Oncology Nurses (APHON), and special interest group in pediatric hematology/oncology of the Society for Pediatric Psychology (SPP). Membership surveys revealed substantial enthusiasm for training in BI. We structured training to include review of the evidence base for BI, role plays, and strategies for implementation at individual sites. Four conference calls designed to enhance implementation were held one, two, three, and five months after training. RESULTS: Ten 1.5-day workshops were held in conjunction with annual meetings of COG, APOSW, APHON, and SPP. A total of 209 psychosocial clinicians from 134 sites were trained. Evaluations were highly favorable. Trainees had provided BI to 545 individuals as of the last conference call. CONCLUSIONS: Initial dissemination goals were met. BI is now available at numerous pediatric oncology centers, but it has not become part of routine care. Future work focused on implementation might consider top-down approaches that include direct communication with pediatric oncologists and hospital leaders about the benefits of incorporating this evidence-based intervention systemically.

Psychosocial functioning of caregivers of pediatric brain tumor survivors.

BACKGROUND: Assessment of caregiver needs is a recommended standard of care in pediatric oncology. Caregivers of pediatric brain tumor survivors (PBTS) are a subgroup that may be at highest psychosocial risk. This study examined psychosocial functioning of caregivers of PBTS in comparison to caregivers of youth without cancer history. We hypothesized that caregivers of PBTS would exhibit more psychological symptoms, higher caregiver burden, and lower perceptions of social support than caregivers of comparison youth. PROCEDURE: As part of a five-site study, we utilized a matched sample design to evaluate psychosocial functioning of 301 caregivers of 189 PBTS (ages 8-15) who were 1-5 years post treatment, and 286 caregivers of 187 comparison youth matched for sex, race, and age. Caregivers completed measures of psychological symptoms, caregiver burden, and perceptions of social support. Repeated measures mixed models compared outcomes between groups and examined differences based on caregiver sex. Socioeconomic status (SES) was examined as a moderator of significant main effects. RESULTS: Caregivers of PBTS reported similar levels of psychological symptoms to caregivers of comparison youth. Mothers of PBTS mothers reported higher caregiver burden and lower perceptions of social support than mothers of comparison youth. Low SES exacerbated group differences in caregiver burden. CONCLUSIONS: Mothers of PBTS may have more caregiving responsibilities and perceive less social support, but reported similar levels of psychological symptoms to comparison mothers; fathers of PBTS were similar to comparison fathers. The mechanisms involved in this complex psychosocial dynamic require further investigation.

A model to evaluate interprofessional training effectiveness: feasibility and five-year outcomes of a multi-site prospective cohort study.

OBJECTIVES: Assessing the impact of interdisciplinary training programs is highly desirable and needed. However, there are currently no established methods to prospectively assess long-term outcomes of trainees compared to individuals who did not receive training. Our objective was to test the feasibility of a longitudinal, prospective cohort design to evaluate training outcomes, and to use this method to evaluate Leadership Education in Neurodevelopmental Disabilities and Related Disorders (LEND) training outcomes. METHODS: LEND trainees were matched to comparison peers and followed annually for up to five years using a pre-existing outcomes survey. We assessed study feasibility using recruitment and retention data over five years. We then looked at preliminary efficacy of LEND training in LEND trainees compared to comparison peers using the pre-existing outcomes survey. RESULTS: Overall, 68.3% of eligible trainees participated in the Outcomes Study across five years, and 66.0% were matched to comparison peers. On average, 84.4% of LEND trainees and 79.9% of comparison peers completed the outcomes survey annually. Attrition was low at 0.9% for LEND trainees and 2.6% for comparison peers over five years. LEND training demonstrated preliminary efficacy in promoting leadership development: LEND trainees began their careers engaged in more leadership activities than comparison peers, and the rate of growth in their participation in leadership activities was greater. CONCLUSIONS: The design used to assess outcomes is a feasible approach that can be widely used to assess training program outcomes. Analyses suggest that LEND training is efficacious in increasing involvement in leadership activities over time after graduation.

Bright IDEAS problem-solving skills training for caregivers of children with sickle cell disease: A two-site pilot feasibility trial.

BACKGROUND: Bright IDEAS problem-solving skills training (BI) is an evidence-based behavioral intervention that has been utilized extensively with caregivers of children recently diagnosed with cancer. Considerable evidence has shown that BI is acceptable to caregivers of children recently diagnosed with cancer, and improvements in problem-solving skills mediate reduced symptoms of distress. PROCEDURES: A slightly modified version of BI was offered to caregivers of children with sickle cell disease (SCD) in a two-site pilot feasibility trial. BI was modified to reduce barriers to care, logistical challenges, and stigma associated with receiving behavioral health services. Our goal was to establish high rates of recruitment and retention among caregivers of children with SCD. Recruitment was acceptable (94%; N = 72) and retention reasonable (49%) across both sites with 35 caregivers successfully completing the BI program. RESULTS: Results showed that caregivers of children with SCD, who successfully completed the BI program reported, significant improvements in problem-solving skills immediately and three months after intervention completion. Interestingly, initial levels of distress were low with few caregivers reporting clinically significant levels of distress; distress remained low over time. CONCLUSIONS: Findings are discussed in the context of psychosocial screening and resilience of caregivers of children with SCD.

Adaptive functioning and academic achievement in survivors of childhood acute lymphoblastic leukemia: A report from the Children's Oncology Group.

PURPOSE: To characterize academic and adaptive skill outcomes in survivors of high-risk B-lineage acute lymphoblastic leukemia (HR B-ALL). METHODS: Participants were 178 patients enrolled on a nontherapeutic clinical trial that aimed to characterize neurocognitive and functional outcomes (ie, academic achievement and adaptive skills) following treatment for childhood HR B-ALL. Eligible patients were treated on Children's Oncology Group AALL0232 clinical trial that included two treatment randomizations: methotrexate delivery (high or escalating dose) and corticosteroid (dexamethasone or prednisone). Academic achievement and adaptive skills were evaluated at one time point, 8-24 months after completing treatment. RESULTS: Multivariable logistic regression showed no significant association between treatment variables and outcomes after accounting for age at diagnosis, sex, and insurance status. In multivariable analyses accounting for sex and insurance status, survivors <10 years old at diagnosis had significantly lower scores in Math (P = .02). In multivariable analyses accounting for sex and age at diagnosis, scores for children with US public health insurance were significantly lower than those with US private or military insurance across all academic and adaptive skills (all P-values ≤.04). Results from univariate analyses showed that boys had significantly lower scores than girls across all adaptive skill domains (all P-values ≤.04). CONCLUSION: Regardless of treatment randomization, survivors of HR B-ALL <10 years at diagnosis are at risk for deficits in Math and overall adaptive functioning; overall adaptive skills for boys were significantly poorer. Screening and early intervention for patients at highest risk, particularly young patients and lower resourced families, should be prioritized.

Responsivity to Problem-Solving Skills Training in Mothers of Children With Cancer.

OBJECTIVE: Bright IDEAS (BI) is a problem-solving skills training (PSST) program that has been demonstrated in earlier randomized controlled trials (RCTs) to be an effective and specific intervention for improving problem-solving skills and reducing negative affect in caregivers of children with cancer. The objectives of this study were to (a) offer an approach to defining meaningful treatment response and to determine the rates of responsivity to PSST; and (b) identify characteristics of PSST responders and nonresponders. METHODS: Data from 154 mothers receiving the BI intervention were analyzed. Drawing on the literature on minimal clinically important differences, two criteria for determining responsivity were calculated for the primary outcome of problem-solving skills: (a) The reliable change index (RCI) based on group data, and; (b) The effect size (ES) of each participant's pre/postintervention change score as a function of the group's baseline SD. RESULTS: Thirty-three percent of the sample met both responsivity criteria immediately posttreatment (39% at follow-up) and 38% (39% at follow-up) met neither. An additional 29% demonstrated a small or greater ES (≥ 0.2) but did not meet the RCI criteria, suggesting possible benefit. The single consistent predictor of responsivity was participants' pretreatment problem-solving skills, with lower skills at baseline predicting greater improvement (p < .001). CONCLUSIONS: These findings highlight the need to go beyond group data in interpreting RCTs and to incorporate measures of meaningful treatment response. Our ability to predict and screen for meaningful treatment response is critical to more precise targeting, enhanced outcomes, and better resource allocation.

Gaps Exist in the Comprehensive Care of Children with Inflammatory Bowel Diseases.

OBJECTIVES: To describe patterns of primary and specialty care delivery in pediatric patients with inflammatory bowel diseases (IBD), delineate which members of the healthcare team provided services, and identify gaps in care. STUDY DESIGN: Cross-sectional survey of parents of children (2-17 years) with IBD and adolescents with IBD (13-17 years) at a free-standing, quaternary children's hospital regarding healthcare receipt. RESULTS: There were 161 parents and 84 adolescents who responded to the survey (75% and 60% response, respectively). The mean patient age was 14 ± 3 years, 51% were male, 80% had Crohn's disease, 16% ulcerative colitis, and 4% IBD-unspecified. Most parents were white (94%), living in a suburban setting (57%). Sixty-nine percent of households had ≥1 parent with a bachelor's degree or higher. Most had private insurance (43%) or private primary with public secondary insurance (34%). Most patients received annual check-ups (70%), vaccinations (78%), and care for minor illnesses (74%) from their primary care provider. Check-ups for gastrointestinal symptoms, IBD monitoring, and changes in type/dosing of IBD treatment were provided by their gastroenterology provider (77%, 93%, and 86% of patients, respectively). Discussions about family/peer relationships, school/extracurricular activities, and mood were not addressed in 30%-40% of participants. Adolescents frequently reported that no one had talked to them about substance use (40%), sexual health (50%), or body image (60%); 75% of adolescents and 76% of their parents reported that no one had discussed transitioning to an adult provider. CONCLUSIONS: There were gaps in the psychosocial care of pediatric patients with IBD. Coordinated, comprehensive care delivery models are needed.

Sedation practices in pediatric patients with acute lymphoblastic leukemia.

BACKGROUND: The 5-year survival for pediatric acute lymphoblastic leukemia (ALL) is greater than 90%. One late effect of pediatric ALL associated with numerous long-term difficulties is neurocognitive deficits. The experience at our institution, as well as conversations with oncologists at other institutions, suggests an increase in the use of sedation during lumbar punctures (LPs) for treatment of pediatric ALL. Among the most common Children's Oncology Group (COG) ALL protocols, approximately 30 LPs are performed over 2-3 years. Studies in animals reveal that sedation drugs may harm the developing brain. Gaps in knowledge exist regarding their use in children, particularly repeated exposures. The purpose of this study is to summarize sedation practices for LPs related to the treatment of ALL at COG institutions. METHODS: Responsible Individuals (RIs) of the Cancer Control Committee of COG were invited to complete an internet-based survey about sedation practices at their institutions. RESULTS: Surveys were sent to 103 RIs with a 62% response rate (N = 64). A combined 2018 new patients with ALL were seen each year (mean = 31.5, range = 3-110) at the participating institutions. The majority (96%) of children with ALL received sedation for LPs. While there was considerable variability across institutions in the type of sedation given, the most common was propofol alone (n = 36, 56%). CONCLUSIONS: A substantial number of children with ALL receive sedation for LPs; however, there is variation in the medication used. Better understanding of sedation practices in children with ALL may inform future research to investigate which methods are the safest, with an emphasis on long-term neurocognitive late effects.

Patterns of Primary, Specialty, Urgent Care, and Emergency Department Care in Children With Inflammatory Bowel Diseases.

OBJECTIVES: Pediatric patients with inflammatory bowel diseases (IBD) require treatment, monitoring, and health maintenance services. We described patterns of primary, specialty, emergency department (ED) and urgent care delivery, and explored patient- and system-related variables that impact ED/urgent care utilization. METHODS: We conducted a cross sectional survey of parents of children with IBD at a large tertiary children's hospital. RESULTS: One hundred sixty-one parents completed the survey (75% response). Mean patient age 13.9 years (51% boys); 80% Crohn disease, 16% ulcerative colitis, 4% IBD-unspecified. Mean disease duration 4 years (standard deviation [SD] 2.7). Thirty percent had at least 1 other chronic disease, 31% had a history of IBD-related surgery. Parents were predominantly Caucasian (94%), well-educated (61% bachelor's degree/higher), part of a 2-parent household (79%) living in a suburban setting (57%). Seventy-seven percent of patients had private insurance. In the past year, most children had 1 to 2 IBD-related office visits (54%) with their gastroenterology (GI) doctor and no IBD-related hospitalizations (79%). Eighty-eight percent (N = 141) had a primary care provider (PCP), and most (70%) saw their PCP 1 to 2 times. Even so, 86% (N = 139) received medical care from places other than their PCP or GI doctor; 27% in the ED and 45% at urgent care. Children of parents with less than a bachelor's degree, families that lived further from their GI doctor, and children who saw their PCP more often were more likely to utilize ED/urgent care. CONCLUSIONS: ED/urgent care utilization in pediatric patients with IBD was greater than expected, potentially contributing to fragmented, costly care and worse outcomes.

Friendships in Pediatric Brain Tumor Survivors and Non-Central Nervous System Tumor Survivors.

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.

Internalizing symptoms in AYA survivors of childhood cancer and matched comparisons.

OBJECTIVE: As the number of pediatric cancer survivors increases, so does our need to understand behavioral late effects. Prior studies show mixed results, with some noting increased emotional distress and psychiatric diagnoses in cancer survivors and others suggesting resilience. The purpose of our study was to evaluate internalizing symptoms such as anxiety and depression in young adult survivors of childhood cancer compared with matched classroom matched peers. METHOD: We completed a multisource, cross-sectional examination of internalizing symptoms using a semistructured psychiatric interview with 18-year-olds with a history of pediatric cancer compared with age, race, and gender matched classroom peers who had been identified during the survivor's first year of treatment and their primary caregivers. RESULTS: Fifty-seven young adult survivors of childhood cancer and 60 comparison peers participated. There were no significant differences between survivors and their peers on the basis of self- or parent-reported depressive or anxiety symptoms or number of psychiatric diagnoses. CONCLUSIONS: Young adult survivors of childhood cancer and their parents did not report increased rates of anxiety or depression compared with their former classroom peers. Despite experiencing a major life challenge, this group of young adults with cancer did not report more current or past symptoms of internalizing psychopathology.

Identifying clinical practice guidelines for the supportive care of children with cancer: A report from the Children's Oncology Group.

Providing evidence-based supportive care for children with cancer has the potential to optimize treatment outcomes and improve quality of life. The Children's Oncology Group (COG) Supportive Care Guidelines Subcommittee conducted a systematic review to identify current supportive care clinical practice guidelines (CPGs) relevant to childhood cancer or pediatric hematopoietic stem cell transplant. Only 22 papers met the 2011 Institute of Medicine criteria to be considered a CPG. The results highlight the paucity of CPGs available to pediatric oncology healthcare professionals and the pressing need to create CPGs using current methodological standards.

Shared Decision Making About Starting Anti-TNFs: A Pediatric Perspective.

Shared decision making (SDM) is central to patient-centered medicine and has the potential to improve outcomes for pediatric patients with inflammatory bowel diseases. We surveyed specialists about their use of SDM in the decision to start a tumor necrosis factor-α inhibitor in pediatric patients. Results were compared between those who reported using SDM and those who did not. Of 209 respondents, 157 (75%) reported using SDM. Physician/practice characteristics were similar between users and nonusers. There were no statistically significant differences between groups in the components deemed important to the decision-making process nor the number of barriers or facilitators to SDM. Exploratory analyses suggested that physicians using SDM were more accepting of adolescent involvement in the decision-making process. Our results question the effectiveness of using reported barriers and facilitators to guide interventions to improve use of SDM, and suggest further work is needed to understand the adolescent role in decision making.

PROMIS Peer Relationships Short Form: How Well Does Self-Report Correlate With Data From Peers?

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.

Cognitive functioning in children from Nigeria with sickle cell anemia.

BACKGROUND: Cognitive impairment is a major neurological complication of sickle cell anemia (SCA) in the United States, but there are limited studies of cognitive impairment in Nigeria, the country with the highest SCA burden. We hypothesized that children from Nigeria with SCA have worse cognitive functioning than comparison children and explored the association between lower cognitive functioning and key laboratory demographic and socioeconomic variables among children with SCA. PROCEDURE: We conducted a cross-sectional survey, supplemented by anthropomorphic and laboratory data, among a convenience sample of children from Nigeria with and without SCA. We administered the Wechsler Intelligence Scale for Children, Version IV. Our primary outcome measures included (1) estimated IQ (Est. IQ), (2) working memory (WM), and (3) processing speed (PS). RESULTS: The sample included 56 children with SCA (mean age 9.20 [SD 2.75], 46.43% girls) and 44 comparison children (mean age 9.41 [SD 2.49], 40.91% girls). Children with SCA performed worse on Est. IQ (84.58 vs. 96.10, P = 0.006) and PS (86.69 vs 96.91, P = 0.009) than comparison children. There was no significant difference in WM between both groups. Factors associated with lower Est. IQ and PS among children with SCA included age, maternal education, weight-for-age Z scores, and height-for age Z scores. CONCLUSION: In this small sample of children from Nigeria, we found worse cognitive functioning in children with SCA than in comparison children, and that sociodemographic and anthropomorphic factors were correlated with cognitive functioning.

Standard of Care for Neuropsychological Monitoring in Pediatric Neuro-Oncology: Lessons From the Children's Oncology Group (COG).

As the mortality of pediatric cancers has decreased, focus on neuropsychological morbidities of treatment sequelae have increased. Neuropsychological evaluations are essential diagnostic tools that assess cognitive functioning and neurobiological integrity. These tests provide vital information to support ongoing medical care, documenting cognitive morbidity and response to interventions. We frame standards for neuropsychological monitoring of pediatric patients with CNS malignancy or who received cancer-directed therapies involving the CNS and discuss billing for these services in the United States in the context of clinical research. We describe a cost-effective, efficient model of neuropsychological monitoring that may increases access to neuropsychological care.

Practical communication guidance to improve phase 1 informed consent conversations and decision-making in pediatric oncology.

BACKGROUND: It can be difficult to explain pediatric phase 1 oncology trials to families of children with refractory cancer. Parents may misunderstand the information presented to them, and physicians may assume that certain topics are covered in the informed consent document and need not be discussed. Communication models can help to ensure effective discussions. METHODS: Suggestions for improving the informed consent process were first solicited from phase 1 study clinicians via questionnaire. Eight parents who had enrolled their child on a phase 1 pediatric oncology trial were recruited for an advisory group designed to assess the clinicians' suggestions and make additional recommendations for improving informed consent for pediatric phase 1 trials. RESULTS: A phase 1 communication model was designed to incorporate the suggestions of clinicians and families. It focused on educating parents/families about phase 1 trials at specific time points during a child's illness, but specifically at the point of disease recurrence. An informative phase 1 fact sheet that can be distributed to families was also presented. CONCLUSIONS: Families who will be offered information regarding phase 1 clinical trials can first receive a standardized fact sheet explaining the general purpose of these early-phase clinical trials. Parental understanding may be enhanced further when oncologists address key themes, beginning at the time of diagnosis and continuing through important decision points during the child's illness. This model should be prospectively evaluated.