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.

Neurocognitive Functioning of Children Treated for High-Risk B-Acute Lymphoblastic Leukemia Randomly Assigned to Different Methotrexate and Corticosteroid Treatment Strategies: A Report From the Children's Oncology Group.

Purpose Survivors of childhood acute lymphoblastic leukemia (ALL) are at risk for neurocognitive deficits that are associated with treatment, individual, and environmental factors. This study examined the impact of different methotrexate (MTX) and corticosteroid treatment strategies on neurocognitive functioning in children with high-risk B-lineage ALL. Methods Participants were randomly assigned to receive high-dose MTX with leucovorin rescue or escalating dose MTX with PEG asparaginase without leucovorin rescue. Patients were also randomly assigned to corticosteroid therapy that included either dexamethasone or prednisone. A neurocognitive evaluation of intellectual functioning (IQ), working memory, and processing speed (PS) was conducted 8 to 24 months after treatment completion (n = 192). Results The method of MTX delivery and corticosteroid assignment were unrelated to differences in neurocognitive outcomes after controlling for ethnicity, race, age, gender, insurance status, and time off treatment; however, survivors who were age < 10 years at diagnosis (n = 89) had significantly lower estimated IQ ( P < .001) and PS scores ( P = .02) compared with participants age ≥ 10 years. In addition, participants who were covered by US public health insurance had estimated IQs that were significantly lower ( P < .001) than those with US private or military insurance. Conclusion Children with high-risk B-lineage ALL who were age < 10 years at diagnosis are at risk for deficits in IQ and PS in the absence of cranial radiation, regardless of MTX delivery or corticosteroid type. These data may serve as a basis for developing screening protocols to identify children who are at high risk for deficits so that early intervention can be initiated to mitigate the impact of therapy on neurocognitive outcomes.

Survivors of childhood cancer and comparison peers: the influence of peer factors on later externalizing behavior in emerging adulthood.

OBJECTIVE: To examine group differences and predictors of externalizing behavior and substance use during the transition to emerging adulthood (i.e., ages 18-25) among survivors of childhood cancer and comparison peers. METHODS: Peer acceptance and social behavior were assessed in classrooms of 55 children (ages 8-15) during cancer treatment. Children with cancer, comparison peers (n = 60), and parents completed measures of externalizing behavior and/or substance use during an initial home visit and soon after participants turned 18. RESULTS: At follow-up, survivors and peers exhibited similar externalizing behaviors and substance use, except peers were more likely to use marijuana. Substance use was associated with earlier peer acceptance and social behavior. Survivors who were older at diagnosis were at greater risk for later externalizing behavior and substance use. CONCLUSIONS: Mean externalizing behaviors and substance use generally fell within normative ranges for both survivors and peers. Some survivors may benefit from interventions to reduce risk behavior.

Parent perceptions of nutritional issues during their child's treatment for cancer.

To examine family mealtime interactions, parental concerns about nutrition, and body mass index (BMI) among children with cancer who did not have primary central nervous system involvement. Parents of 95 children receiving treatment for cancer and 95 comparisons completed the About Your Child's Eating-Revised (AYCE-R) measure. Anthropometric data for children with cancer were obtained from medical charts at diagnosis and again when the AYCE-R was administered. No differences in mealtime interactions were found between children with cancer and comparisons, but parents of children with cancer reported greater concern about their child's weight. Anthropometric measures for children with cancer were consistent with national norms. However, children with cancer were somewhat underweight at diagnosis and became heavier over time. Lower BMI was associated with mother and father report of greater resistance from the child at mealtime, father report of his own aversion to family meals, and more severe treatment. The impact of cancer on family mealtime interactions and BMI appeared minimal during treatment. However, further longitudinal research is needed given the risk for late effects, such as growth problems and obesity, among cancer survivors. Families also may benefit from ongoing education to optimize healthy lifestyles among survivors.