Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity.

OBJECTIVES: Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC). METHODS: Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student's t-tests compared the sample's mean T-scores to US population norms. Pearson's correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics. RESULTS: Compared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all p <.001). Whereas participants reported a significantly higher sense of meaning and purpose (p<.05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, -0.39 to -0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race/ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being. CONCLUSION: Family caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health. WHAT'S NEW: In this cross-sectional survey of family caregivers of children with medical complexity, caregivers reported clinically significantly poorer global mental health, higher emotional distress, and reduced sleep-related health. This study provides potential therapeutic targets for future psychosocial interventions.

Psychometric properties of the 52-, 25-, and 10-item English and Spanish versions of the Social Problem-Solving Inventory-Revised.

Objective: The Social Problem-Solving Inventory-Revised (SPSI-R) is a widely used instrument to assess problem-solving ability. This study examined the factor structure of the 52-, 25-, and 10-item versions of the SPSI-R and assessed factorial invariance across English- and Spanish-speaking participants. In addition, the internal consistency, test-retest reliability and sensitivity to detect change in problem-solving skills over time were assessed across the three different versions of the SPSI-R. Methods: Data from three randomized controlled trials, in which caregivers of children with cancer (N = 1,069) were assigned to either a problem-solving skills intervention (N = 728) or a control condition (N = 341), were combined. The SPSI-R was administered at baseline (T1) and immediately post intervention (T2). Reliability and multigroup analyses were performed with confirmatory factor analysis (CFA). Sensitivity to change analyses were performed using repeated measures ANOVA. Results: Confirmatory factor analysis at T1 showed good fit statistics and internal consistency for the 52- and the 25-item versions, but not for the 10-item version. Factorial invariance was demonstrated across time (T1-T2) and language (Spanish-English) for both the 52- and 25-item versions. Adequate sensitivity to change over time was shown. Conclusion: The 52- and 25-item versions of the SPSI-R appear reliable and valid for assessment of problem-solving skills in English- and Spanish-speaking caregivers of children with newly diagnosed cancer. The 25-item SPSI-R can be used as a short version measuring problem-solving ability; the 10-item version cannot be considered a reliable measure for this population.

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.

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.

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.

Parental Distress in Pediatric Inflammatory Bowel Diseases: Associations With Time From Diagnosis, Disease Activity, and Demographic Factors.

Background: There are limited studies examining caregiver distress when raising a child with inflammatory bowel disease (IBD). The aim of this study was to investigate the occurrence of symptoms of distress (anxiety, depression, and post-traumatic stress disorder [PTSD]) among parents with children with IBD and associations with disease severity, time from diagnosis, and demographic factors. Methods: We conducted a cross-sectional study with parents of children (2-17 years) diagnosed with IBD. There were 2 cohorts: (1) recently diagnosed cohort (<6 months from diagnosis); (2) established diagnosis cohort (>1 year from diagnosis). Parents completed measures of anxiety, depression, and PTSD, while children completed surveys on the symptoms of their IBD. Results: Fifty-two parents in the recently diagnosed cohort and 103 parents in the established diagnosis cohort completed surveys. For the entire cohort of parents, we found the mean scores on all measures of distress were within the normal ranges with 20%, 13%, and 8% of parents reporting moderate-to-severe symptoms of anxiety, depression, and PTSD, respectively. Symptoms of anxiety and depression were not significantly associated with time from diagnosis; symptoms of anxiety and PTSD were significantly associated with patients' IBD clinical activity. Conclusions: Parents with children with IBD are remarkably resilient to distress even soon after their child's diagnosis. Despite considerable resilience, routine brief caregiver screening for symptoms of anxiety during annual visits seems reasonable and feasible.

Feasibility and Acceptability of Bright IDEAS-Young Adults: A Problem-Solving Skills Training Intervention.

BACKGROUND: Young adults with cancer are a vulnerable group with unique emotional, social, and practical needs. There is a lack of evidence-based interventions to address their needs and to foster skills that could increase their capacity to cope. Bright IDEAS is a problem-solving skills training intervention that has demonstrated efficacy in improving people's problem-solving ability and reducing distress among caregivers of children with cancer. This study evaluated the feasibility and acceptability of Bright IDEAS adapted for young adults (Bright IDEAS-YA). METHODS: Forty young adults recently diagnosed with cancer were enrolled in a single arm feasibility study. RESULTS: Feasibility was demonstrated by the adequate enrollment (67.8%), retention (80.0%), and participants' adherence to the intervention (average of 5.2 out of 6 sessions completed). Participants reported satisfaction with the intervention. Qualitative feedback identified the systematic approach to problem-solving and interaction with the trainer as strengths of the intervention. Participants demonstrated improvements in problem-solving skills and symptoms of depression and anxiety. CONCLUSIONS: In conclusion, the results support the feasibility of the intervention and an adequately powered randomized controlled trial is needed to determine the efficacy of the intervention on psychosocial outcomes.

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.

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.

Core functions and forms of Bright IDEAS: A multi-methods evaluation of the adoption of an evidence-based psychosocial training program through iterative adaptation.

Background: Despite efforts to widely disseminate interventions designed to increase access to quality supportive care to pediatric cancer patients and their families, many of these interventions fail to meet expectations once deployed in real-life clinical settings. This study identifies the functions and forms of Bright IDEAS: Problem-Solving Skills Training, an evidence based psychosocial intervention for caregivers of children recently diagnosed with cancer, to identify pragmatic program adaptations in its real-world clinical implementation. We compare intervention adoption before and after adaptations to the Bright IDEAS training program as part of a national training program designed to disseminate the intervention. Methods: 209 pediatric psychosocial oncology practitioners representing 134 unique institutions were trained during 10 in-person 8-hour workshops (2015-2019). Functions and forms of Bright IDEAS were identified, and adaptations made to the training agenda and curriculum based on practitioner feedback following implementation in local institutions. Mixed method evaluation included longitudinal surveys at 6- and 12-months post training; and qualitative interviews among a subgroup of practitioners (N = 47) to understand and compare perspectives on intervention adoption and barriers to implementation before and after adaptations to the Bright IDEAS training program. The RE-AIM framework was used to guide dissemination evaluation. Results: A total of four adaptations were tailored to the identified forms of the intervention: case studies; pre-training reading materials; training videos; and letters of institutional support from primary supervisor. Pre- and post-training adaptations to the Bright IDEAS training program were mapped to RE-AIM constructs. Quantitative findings demonstrate that adaptations appeared to improve adoption and usage overall. Conclusion: This study provides insight into how contextual factors influence psychosocial practitioners' capacity to adopt, implement, and maintain Bright IDEAS in the clinical setting. This study demonstrates the use of real-time stakeholder feedback to guide intervention translation from research to practice settings.

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.

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.

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.

Caregiver and Adolescent Patient Perspectives on Comprehensive Care for Inflammatory Bowel Diseases: Building a Family-Centered Care Delivery Model.

BACKGROUND: Children with inflammatory bowel diseases (IBDs) require primary and gastrointestinal (GI) care, but little is known about patient and family preferences for care receipt. We aimed to understand caregiver perceptions of current healthcare quality, describe barriers to receiving healthcare, and elicit caregiver and adolescent preferences for how comprehensive care ideally would be delivered. METHODS: This was an anonymous survey of caregivers of 2- to 17-year olds with IBD and adolescents with IBD aged 13-17 years at a large, free-standing children's hospital. Surveys assessed patient medical history, family demographics, perceptions of health care quality and delivery, barriers to primary and GI care, and preferences for optimal care delivery. RESULTS: Two hundred and seventeen caregivers and 140 adolescents were recruited, 214 caregivers and 133 adolescents consented/assented, and 160 caregivers and 84 adolescents completed the survey (75% and 60% response rate, respectively). Mean patient age was 14 years (SD = 3); 51% male; 79% Crohn's disease, 16% ulcerative colitis, and 4% indeterminate colitis. Caregivers were primarily female (86%), Caucasian (94%), and living in a 2-caregiver household (79%). Most caregivers reported that their child's primary care physician (PCP) and GI doctor oversaw their primary care (71%) and their IBD care (94%), respectively. Caregivers were satisfied with communication with their PCP and GI providers (>90%) but did not know how well they communicated with one another (54%). Barriers to primary and GI care varied, and few caregivers (6%) reported unmet healthcare needs. Caregivers and adolescents saw PCPs and GI doctors having important roles in comprehensive care, though specific preferences for care delivery differed. CONCLUSION: Caregivers and adolescent perspectives are essential to developing family-centered care models for children with IBD.

In-person vs. web-based administration of a problem-solving skills intervention for parents of children with cancer: Report of a randomized noninferiority trial.

BACKGROUND: Bright IDEAS (BI) problem-solving skills training is an evidence-based intervention designed to help parents manage the demands of caring for a child with cancer. However, the resource intensiveness of this in-person intervention has limited its widespread delivery. We conducted a multicenter, randomized trial with a noninferiority design to evaluate whether a web-based version of BI requiring fewer resources is noninferior to in-person administration. METHODS: 621 caregivers of children with newly diagnosed cancer were randomly assigned to standard BI delivered face-to-face or a web-based version delivered via mobile device. The primary outcome was caregiver-reported problem-solving skills. The noninferiority margin was defined as 0.2 standard deviation units of the change from baseline to end of intervention. Secondary outcomes included caregiver-reported mood disturbance, depression, and posttraumatic stress symptoms. The study was registered with ClinicalTrials.gov Identifier: NCT01711944. FINDINGS: The effect of the standard treatment was preserved; parents in the standard BI arm improved their problem-solving (effect size = 0.53, t = 8.88, p < .001). Parents in the web-based BI group also improved their problem-solving (effect size = 0.32, t = 5.32, p < .001). Although the web-based intervention preserved 60% of the standard treatment effect, the test of noninferiority was non-significant (effect size = -0.21, p = 0.55). Similarly, the web-based intervention preserved > 60% of the standard intervention effect on all secondary outcomes; however, tests of noninferiority were non-significant. INTERPRETATION: Noninferiority of web-based BI relative to standard face-to-face administration was not established. Further development of the web-based BI is needed before it can be recommended as a stand-alone intervention. However, the documented benefits of the web-based intervention as well as the advantages of low resource utilization and ease of delivery suggest that further development of web-based BI is indicated, and that it may play a valuable role in alleviating distress in caregivers of children with serious or chronic illness. FUNDING: National Institutes of Health (U.S.), R01 CA159013 (P.I. Sahler).

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.

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.

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.