A Web-based Lifestyle Intervention for Cancer Survivors: Feasibility and Acceptability of SurvivorSHINE.

Assess the feasibility, acceptability, and preliminary efficacy of a healthy lifestyle website, SurvivorSHINE ( www.survivorshine.org ), for cancer survivors using a mixed-methods approach. Formative research included a comprehensive literature review and four focus groups on website preferences with diagnosis-diverse cancer survivors (N = 17). Their feedback informed a web adaptation of a telephone counseling and mailed-print lifestyle intervention previously found effective for cancer survivors. The resulting web-based intervention was examined in a 3-week, single-arm trial among 41 cancer survivors. Assessments of physical activity, diet, body weight, and knowledge related to exercise and diet guidelines for cancer survivors occurred at baseline and 3 weeks later, along with exit interviews. Themes from focus groups indicated cancer survivors' desire for easy-to-use, interactive web-based platforms to access credible diet and exercise information. The study sample was recruited within 12 months, and study retention was high (85.4%). Participants showed significant pre- to post-test improvements in diet and exercise knowledge (t = 5.31, p < .0001) and physical activity (t = 2.40, p = .02). Improvements in body weight and some dietary components (red meat, alcohol) were observed, but did not reach statistical significance. Results support the feasibility and acceptability of SurvivorSHINE. The significant increases in healthy lifestyle knowledge and physical activity found in the current study are promising, but a larger, randomized-controlled trial is needed to determine efficacy.

Treating anxiety and depression in inflammatory bowel disease: a systematic review.

OBJECTIVE: Inflammatory Bowel Disease (IBD) is associated with higher rates of clinically significant anxiety and depression than in healthy populations. Psychosocial interventions targeting anxiety and depression in IBD have variable efficacy and disparate treatment approaches, making treatment recommendations difficult. The current study aimed to identify effective treatment components across psychosocial treatment approaches for anxiety and depression in IBD. DESIGN: A systematic review of psychosocial treatments for anxiety and depression in IBD was conducted. Based on the Distillation and Matching Model, treatments were coded and data aggregated by intervention components, or practice elements (PE), to elucidate replicable clinical techniques. MAIN OUTCOME: The percentage of studies utilizing a given PE was the primary outcome. MEASURES: Among all included studies, as well as among those finding favorable, significant effects on anxiety or depression, the percentage utilizing each PE and number of PEs utilized was determined. RESULTS: The most utilized PEs among included interventions were relaxation, IBD psychoeducation, cognitive restructuring, distraction, and social skills. Examining only interventions with favorable differences on specified outcomes (HRQoL, Anxiety, Depression, and/or Coping) indicated that relaxation, education, cognitive restructuring, and mindfulness were most utilized. CONCLUSION: Implications for clinical practice are discussed, including the development and dissemination of treatment recommendations.

Risk models for predicting the health-related quality of life of caregivers of youth with gastrointestinal concerns.

PURPOSE: To determine the usefulness of cumulative and additive risk models in predicting the healthy-related quality of life (HRQOL) of caregivers of youth with chronic gastrointestinal conditions. METHODS: 203 caregivers (82.8% mothers; 77.3% white) of youth (M = 11.27 years; 44.3% female; 78.8% White) completed self-report questionnaires focused on potential environmental, child health, and family risk factors that could impact caregiver HRQOL. Cumulative risk models, evaluating overall combined risk level, as well as an additive risk model, exploring individual risk variables, were evaluated. RESULTS: Higher levels of cumulative risk were associated with poorer caregiver HRQOL after controlling for child and caregiver sex. A linear cumulative risk model was a better fit than a quadratic cumulative risk model for predicting caregiver HRQOL, while an additive model identified child HRQOL, child pain interference and family functioning as the most individually impactful risk variables. CONCLUSION: This study illustrates the usefulness of both additive and cumulative risk approaches in identifying caregivers at risk for poor HRQOL. Provision of appropriate referrals and interventions based on the caregiver's risk factors can help protect caregiver quality of life and, in turn, benefit the care children with chronic conditions receive at home.

Relations between disease status and body composition in pediatric inflammatory bowel disease.

To evaluate the effect of remission status on physical activity and body composition in pediatric patients with inflammatory bowel disease (PIBD) and healthy peers. Single-center cohort study, including 54 PIBD patients and 33 healthy peers. During the initial study visit, a brief demographic questionnaire, physical activity questionnaire completed by participants, and instructions on recording dietary intake were given. Physicians completed the Physician Global Assessment (PGA) for disease severity. Medical chart abstraction was done to obtain disease variables of interest. DEXA scan completed 1 week later to obtain information on body composition. Variables of interest were compared between the three groups (IBD-Remission, IBD-Active, and healthy controls) using an ANOVA or Chi-square test as appropriate. IBD patients were older than controls, reported lower quality of life (73.9 vs. 80.9), and engaged in less MVPA (195.4 versus 361.1). The IBD-Active group had a significantly lower lean body mass, bone mineral density, and time spent in MVPA compared to the IBD-Remission group and healthy controls. IBD-Remission group had a significantly lower percentage of biologic use (55% vs. 87%) and comorbidities (26% vs. 44%) compared to IBD-active group. IBD-remission group also had a lower fat mass percentage. In this study, we report significantly favorable LBM, BMD, and time spent in MVPA in patients with IBD in remission compared to those not in remission with the former demonstrating a body composition resembling that of healthy peers.Conclusion: While an improvement in BMD was observed with remission, the scores were still lower than controls. What is Known: • Body composition deficits in pediatric inflammatory bowel disease are common and some persist despite achievement of remission leading to long term outcomes including osteopenia and osteoporosis. • Weight restoration in patients with pediatric IBD is primarily explained by gains in fat mass without similar gains in lean mass. What is New: • While an improvement in bone mineral density was observed, the achievement of remission significantly improves affects physical activity and body composition in pediatric inflammatory bowel disease. • However, some parameters of body composition do not reach levels comparable to healthy peers.

Serum Transaminases at Presentation and Association with Acute Dialysis in Children with Hemolytic Uremic Syndrome.

Background: To determine whether serum transaminases at presentation predict the need for dialysis in children with hemolytic uremic syndrome (HUS). Methods: Single-center, retrospective chart review of pediatric patients with HUS. Data collected included demographics, clinical and laboratory parameters, and need for dialysis. These factors were compared between two groups: "dialysis" versus "no dialysis." Continuous data were compared using a t test whereas categoric data were compared by the chi-squared test. Multivariate logistic regression was performed on a prior set of variables to determine if serum transaminases independently predict the need for dialysis. Results: A total of 70 children were included in the study, of which, 39 (27%) received dialysis. The no-dialysis group had a higher proportion of white patients compared with the dialysis group (74% dialysis versus 94% no dialysis). The only clinical sign at admission associated with dialysis was reduced urine output (56% versus 16%, P<0.001). Univariate logistic regression identified admission serum creatinine, aspartate transaminase (AST), and alanine transaminase (ALT) to be associated with the need for dialysis. Multivariate logistic regression showed serum AST and ALT to be independent predictors of the need for dialysis, with both improving the performance of the regression model. Sensitivity analysis showed a cutoff of 129 U/L for AST and 83 U/L for ALT with high specificity. Conclusions: Serum transaminases at presentation are independently associated with the subsequent need for dialysis in patients with HUS. Our study suggests that when both serum ALT and AST are normal, the likelihood to need dialysis is very low; alternatively, when both serum ALT and AST are more than two times the upper level of normal, the need for dialysis is very high.

Conceptual Model of Lean Body Mass in Pediatric Inflammatory Bowel Disease.

Youth with inflammatory bowel disease (IBD) demonstrate deficits in lean mass (LM) placing them at increased risk for future health problems, including reduction of bone mass and impaired bone architecture. Research suggests that deficits in LM are multifactorial, including influences from the disease and its treatment, and health behaviors such as diet and physical activity. Based on a systematic literature review examining factors related to LM deficits in IBD, this article presents a conceptual model to explain the development of LM in youth with IBD. The model considers predictors of LM across 4 domains: demographic; medical; diet; and physical activity. Much existing research is cross-sectional, but suggests multiple factors work together to promote or inhibit LM accrual in youth with IBD. The conceptual model, developed based on empirical findings to date, can be used to understand and further elucidate the process through which LM is developed and maintained, to inform the development of empirically supported clinical interventions, and to guide future research objectives and priorities.

Disease-Related Predictors of Health-Related Quality of Life in Youth With Eosinophilic Esophagitis.

Objective: To evaluate relations between health-related quality of life (HRQoL) and clinical symptom presentation in youth with eosinophilic esophagitis (EoE). We hypothesized that presence of dysphagia, reflux, nausea/vomiting, and epigastric pain would be related to poorer HRQoL. In predictive models, it was hypothesized that dysphagia, reflux, nausea/vomiting, and epigastric pain would each significantly and uniquely predict poorer HRQoL. Methods: This cross-sectional, two-study design included 91 dyads comprised children with EoE and their respective caregivers across two tertiary children's hospitals, Site 1 in the Midwest (N = 47) and Site 2 in the Deep South (N = 44). Youth and their caregivers both completed questionnaires addressing HRQoL and EoE symptoms during clinic visits. Results: Per youth self-report, epigastric pain was found to be a significant predictor of poor physical and psychosocial HRQoL. Per caregiver-proxy reports, epigastric pain was found to be a significant predictor of poor physical HRQoL. Conclusions: The clinical symptoms of EoE, specifically epigastric pain, were found to be predictive of the youth's HRQoL. Targeted interventions to help youth with EoE better manage their specific symptom experiences could ultimately improve HRQoL.

Setting Adolescents Up for Success: Promoting a Policy to Delay High School Start Times.

BACKGROUND: A unique biological shift in sleep cycles occurs during adolescence causing later sleep and wake times. This shift is not matched by a concurrent modification in school start times, resulting in sleep curtailment for a large majority of adolescents. Chronic inadequate sleep is associated with poor academic performance including executive function impairments, mood, and behavioral issues, as well as adverse health outcomes such as an increased risk of obesity, hypertension, and cardiovascular disease. In order to address sleep deficits and the potential negative outcomes associated with chronic sleep deprivation, the American Academy of Pediatrics (AAP) and US Centers for Disease Control and Prevention (CDC) support delaying school start times for middle and high school students. METHODS: We summarize current evidence, explicate the need for policy change, and urge school districts to put adolescent students' health as top priority and implement school start times consistent with their developmental needs. RESULTS: Whereas substantial evidence illustrating adverse consequences of inadequate sleep on psychological and physical health, and recommendations exist to adapt daytime school schedules to match sleep needs have been released, actual implementation of these recommendations have been limited. CONCLUSIONS: This is a call to action for the implementation of AAP/CDC recommendations across the state and nation.

Barriers to the Use of Psychosocial Support Services Among Adolescent and Young Adult Survivors of Pediatric Cancer.

Purpose: Adolescent and young adult (AYA) survivors of pediatric cancer commonly report both functional and emotional difficulties, yet many of their mental health needs are not met. Given the unique needs of these survivors, this study examined barriers to psychosocial support service utilization in this population, including accessibility, personal preferences, and practical barriers such as insurance and transportation. Methods: Thirty-six adolescent and young adult survivors of pediatric cancer (aged 15-29) with mental health difficulties (i.e., anxiety or depression) completed surveys assessing access and utilization of services and barriers to utilization. Services assessed included the use of mental health professionals, a pastor or someone in a place of worship, and support groups. Results: Half of the participants utilized a mental health professional, but other forms of support were used less frequently. Utilization of services was related to insurance status and use of prescription medication. Greater time since completion of treatment was a barrier to utilizing psychosocial support services. Conclusion: Use of psychosocial support services is linked closely with use of other healthcare services, including taking prescription medication for mood difficulties. Results have implications for how primary care and oncology providers address barriers to these services among AYA survivors of pediatric cancer.

Physician and nurse beliefs of phase 1 trials in pediatric oncology.

BACKGROUND: In order to improve the survival of children with cancer, novel therapies must be identified. Promising agents are tested in phase 1 trials in order to identify appropriate dosing and describe toxicity in children. The identification and referral of candidate patients for phase 1 trials rely heavily on medical providers who must balance their own perceptions of phase 1 trials with the desires and willingness of the patient and his/her family. OBJECTIVE: The goal of the present study was to evaluate and compare physician and nurse perceptions regarding the beliefs, expectations, and perceived benefits of phase 1 clinical trials. METHODS: A survey consisting of 21 questions was sent to 419 physicians and nurses practicing pediatric oncology at 30 different institutions. With the exception of 10 demographic questions, items were either rank ordered or rated on 5-point Likert scales. RESULTS: Ninety-four physicians and 122 nurses completed the online survey. Physicians and nurses differed in their knowledge of the goals and medical effects of phase 1 clinical trials. CONCLUSIONS: Physicians and nurses hold positive beliefs regarding phase 1 clinical trials and support their role in the treatment of children with cancer. Education is necessary to increase nurses' knowledge of the goals and outcomes. IMPLICATIONS FOR PRACTICE: These findings suggest that continued education of nurses as well as physicians about the goals, execution, and monitoring of phase 1 therapy would be worthwhile.

Social skills and executive function among youth with sickle cell disease: a preliminary investigation.

OBJECTIVES: To explore the relationship between executive function (EF) and social skills in youth with sickle cell disease (SCD). METHODS: 20 youth with SCD completed objective tests of EF (Tasks of Executive Control; Animal Sorting subtest from the Developmental Neuropsychological Assessment-Second Edition), an IQ screener, and paper-and-pencil measures of social skills (Social Skills Improvement System [SSIS]). Primary caregivers completed paper-and-pencil measures of EF (Behavior Rating Inventory of Executive Function) and social skills (SSIS). RESULTS: EF scores from the Behavior Rating Inventory of Executive Function related to parent- and child-reported social skills such that EF deficits correlated with poorer overall and domain-specific social skills. Similarly, EF scores from the Animal Sorting test related to child-reported social skills. Worse parent-reported EF predicted worse parent-reported social skills above the variance accounted for by IQ. CONCLUSIONS: EF is related to social skills and may be necessary for successful social interaction among youth with SCD. These results provide rationale and guidance for future larger-scale investigations of EF and social skills among children with SCD.