Sleep Patterns, Pain, and Emotional Functioning in Youth with Inflammatory Bowel Disease.

Objective: Youth with inflammatory bowel disease (IBD) may be at increased risk for sleep difficulties due to the painful and inflammatory nature of their disease. Moreover, children and adolescents with IBD experience impairment across a variety of psychosocial domains. However, researchers have yet to investigate the complex interplay between sleep, disease-related symptoms, and psychosocial factors in this population. The purpose of this study was to examine sleep patterns, pain, and mood in pediatric IBD. Methods: A sample of 25 children and adolescents with IBD (Mage = 14.24, Range = 10-18 years; 56% male) were recruited from a pediatric gastroenterology clinic. Youth wore an actigraphy watch and completed daily measures of affect and pain over the course of 14 days. Statistical analyses involved repeated measures general estimating equations. Results: No significant association for sleep with negative affect was demonstrated. Despite majority of this sample being in disease remission, results revealed that increased sleep onset latency was associated with presence of next day pain and pain was associated with better next night sleep efficiency. Conclusions: Findings of the current study suggest youth with IBD experience poor sleep quality, which is significantly related to the pain they experience. Consequently, healthcare providers should screen for and address sleep quality to optimize outcomes in their pediatric patients. Objectively assessing sleep patterns (e.g., actigraphy) may prove useful for pediatric IBD samples; however, additional research is needed to determine actigraphy's feasibility and efficacy in assessing sleep patterns in real world settings (e.g., pediatric medical clinics).

The Role of Youth Coping Strategies and Caregiver Psychopathology in Predicting Posttraumatic Stress Symptoms in Pediatric Burn Survivors.

Caregiver psychosocial functioning is repeatedly linked with postburn adjustment in pediatric burn survivors. However, few studies have examined youth characteristics as predictors, such as coping strategies. Furthermore, research has not explored how caregiver psychopathology and youth coping strategies interact to predict youth postburn adjustment. The aim of this study was to examine how youth coping strategies and caregiver anxiety and depression predict youth posttraumatic stress symptoms (PTSS). Forty-six youth between 7 and 17 years old (M = 12.5, SD = 2.65) and their caregivers were recruited from two U.S. burn centers. Youth and parents completed questionnaires that assessed demographics, caregiver anxiety, and depression, youth self-reports of coping strategies, and youth PTSS. Burn injury data (e.g. TBSA, time since injury) was obtained from medical record reviews. Hierarchical regressions were conducted with caregiver psychopathology (depression, anxiety), youth coping strategies (active, avoidant, distraction, social support), and the interaction between caregiver psychopathology and youth coping strategies as predictors and youth PTSS as the outcome variable. Higher levels of caregiver anxiety (ßs = .36 to .42) and avoidance coping (ßs = .38 to .43) were associated with more PTSS. Caregiver anxiety and depression moderated the association between youth use of distraction coping and youth PTSS. These findings reinforce the importance of assessing psychosocial functioning in pediatric burn survivors and their caregivers, and providing interventions to promote better psychosocial outcomes. Coping strategies may help reduce PTSS and buffer against the harmful influence of caregiver psychopathology. Future research may wish to pilot interventions that promote healthy coping.

Social competence in pediatric burn survivors: A systematic review.

OBJECTIVE: Youth sustaining burn injuries during childhood have dramatically increased survival rates due to improvements in medical treatment and multidisciplinary approaches to burn critical care and recovery. Despite positive advancements in burn treatment, youth sustaining such injuries may experience social deficits. Thus, this systematic review without meta-analysis investigation contributes to the growing literature on this topic by comparing social competence of pediatric burn survivors to youth without burns, and examining potential correlates of social competence among children and adolescents who have sustained burn injuries. METHOD: Fifteen empirical studies assessing social competence among youth with burns and published in the last 4 decades (i.e., 1980-2015) were identified. Data from youth, parent, and teacher perspectives related to social competence in pediatric burn survivors were extracted from studies meeting inclusion criteria. RESULTS: Results comparing social competence levels between pediatric burn survivors and youth without burns were mixed; some studies indicate that the social competence levels of pediatric burn survivors fell within the normal range, whereas other work found these youth to display social deficits. CONCLUSIONS: Implications for clinical practitioners, methodological strengths and limitations of the included research studies, and directions for future research are discussed. (PsycINFO Database Record

A Pilot Study of the Efficacy of Active Leptospermum Honey for the Treatment of Partial-Thickness Facial Burns.

OBJECTIVE: Research suggests that active Leptospermum honey (ALH) improves outcomes in patients with partial-thickness burns by enhancing healing and reepithelialization rates, as well as by protecting against antibiotic-resistant microorganisms. This study assessed the effectiveness of ALH gel on healing time, bacterial growth, patient satisfaction, and cost of treatment. DESIGN: Single-arm, prospective case series. SETTING AND PATIENTS: Seven patients (aged 7-64 years) with partial-thickness facial burns were recruited from a northeastern US burn center. INTERVENTION: All patients cleansed their wounds daily with soap and water, after which they applied ALH gel. MAIN OUTCOME MEASURES: Three physicians independently rated healing using wound photography and daily tests for the presence of exudate. Wound cultures on days 1 and 7 (±2 days) assessed bacterial growth. Patients completed a satisfaction survey at the end of treatment, and cost of treatment was calculated. MAIN RESULTS: Healing time ranged from 3 to 14 days (mean, 8.1 days). Wound cultures revealed normal bacterial growth on days 1 and 7 for all patients. Patients rated ALH gel favorably, with the most common complaint of stickiness in 5 patients. One patient experienced transient burning on application that did not interrupt treatment. Average hospital-based cost of treatment was $26.15 per patient. CONCLUSIONS: Healing time was congruent with or better than what would have been expected with standard treatment. Furthermore, despite no antibiotic treatment, wound culture results yielded no abnormal bacterial growth. Finally, patients overall reported satisfaction with treatment. The findings of this study suggest that ALH is a clinically and economically valuable treatment for partial-thickness facial burns.

Patient adherence to burn care: A systematic review of the literature.

OBJECTIVE: Few studies have been conducted on treatment adherence to burn care. Given the prevalence of burn injuries across the lifespan and the impact of proper burn care on associated morbidity, it is important to understand factors associated with regimen non-adherence in this population. The purpose of this paper is to summarize and critique all published literature on patient adherence to burn care. METHOD: With no restriction on publication date, 13 relevant articles met the following inclusion criteria: (a) utilized a sample of patients who sustained a burn injury or their medical staff; (b) focused on treatment or healthcare adherence of the patient (e.g., adherence to pressure garment therapy, physical therapy, occupational therapy, diet, dressing changes, or sunscreen use); and (c) publication written or translated into English. RESULTS: Most studies (70%) used a correlational design, while only four studies used an experimental design (either longitudinal or single subject) to assess adherence to burn care treatment. Current research suggests that burn treatment characteristics, knowledge, and beliefs are associated with adherence to burn care regimens. CONCLUSIONS: Given that adherence may vary as a function of different factors, future research should assess pediatric burn patients as a separate population, as well as investigate adherence to multiple aspects of the burn care regimen. To enhance adherence to burn care, healthcare providers should educate their patients on various treatment components and tailor these components to meet patients' goals and needs, as feasible.

Health-related quality of life of adolescent and young adult survivors of childhood brain tumors.

OBJECTIVE: Our aim was to expand research on predictors of health-related quality of life (HRQOL) for adolescent and young adult survivors of childhood brain tumors who are not living independently by evaluating the mediating role of family functioning in the association of disease severity/treatment late effects with survivor self-report and caregiver-proxy report of physical and emotional HRQOL. METHODS: Mothers (N = 186) and their survivors living at home (N = 126) completed self-report and caregiver-proxy report of physical and emotional HRQOL. Mothers completed family functioning measures of general family functioning, caregiving demands, and caregiver distress. Medical file review and caregiver report were used to evaluate disease severity/treatment late effects. RESULTS: Using structural equation models, family functioning was adjusted for sociodemographic factors. Disease severity/treatment late effects had significant direct effects on self-report and caregiver-proxy report of physical and emotional HRQOL. Family functioning had a significant direct effect on caregiver-proxy report of physical and emotional HRQOL, but these findings were not confirmed for self-report HRQOL. Model-fit indices suggested good fit of the models, but the mediation effect of family functioning was not supported. CONCLUSIONS: Disease severity/treatment late effects explained self-report and caregiver-proxy report of physical and emotional HRQOL for these adolescent and young adult survivors of childhood brain tumors. Family functioning was implicated as an important factor for caregiver-proxy report only. To enhance physical and emotional HRQOL, findings underscore the importance of coordinated, multidisciplinary follow-up care for the survivors who are not living independently and their families to address treatment late effects and support family management.

Insurance status as a sociodemographic risk factor for functional outcomes and health-related quality of life among youth with sickle cell disease.

Youth with sickle cell disease (SCD) are at risk for functional limitations and poor health-related quality of life (QoL). This study examined sociodemographic factors that may interact with medical complications to reduce functional ability and QoL among youth with SCD. Fifty-three patient/caregiver pairs (children 8 to 18 years; M=12.3 y) with SCD completed the Functional Disability Inventory and Pediatric Quality of Life Inventory questionnaires. Medical database reviews were conducted to collect health care utilization, disease complications, and sociodemographic information; insurance type (public vs. private insurance) and family zip code to access Census tract data reflecting neighborhood distress. Insurance type, but not neighborhood sociodemographic risk indicators, was significantly associated with disease-related complications and QoL. There were significant differences in both health care utilization and QoL by insurance type. Complications were higher in the group with public insurance. Insurance type seems to be more strongly related to disease outcomes and QoL than neighborhood sociodemographic distress. Closer attention to the contribution of insurance type to health outcomes may provide important insight to potential barriers for disease management. These issues are critically important for health care efficiency and equity for poor and underserved children with chronic health conditions.

Predictors of Academic Achievement for School Age Children with Sickle Cell Disease.

BACKGROUND: Children with sickle cell disease (SCD) are at risk for neurocognitive impairment and poor academic achievement, although there is limited research on factors predicting academic achievement in this population. This study explores the relative contribution to academic achievement of a comprehensive set of factors, such as environmental (socioeconomic status), disease-related (stroke, transfusion therapy, adherence), and psychosocial variables (child behavior, child quality of life (QoL)), controlling for intellectual functioning (IQ). METHODS: Eighty-two children with SCD completed measures assessing IQ and academic achievement, while parents completed questionnaires assessing adherence, child behavior, and child quality of life. Medical chart reviews were conducted to determine disease-related factors. RESULTS: Hierarchical regression analyses indicated that 55% of the variance in academic skills was accounted for by IQ, parent education, chronic transfusion status, and QoL [R2 = .55, F(5, 77) = 18.34, p < .01]. Follow-up analyses for broad reading [R2 = .52, F(5, 77) = 16.37, p < .01], and math calculation [R2 = .44, F(5, 77) = 12.14, p < .01] were also significant. CONCLUSION: The findings suggest a significant contribution of factors beyond IQ to academic achievement. Findings allow for identification of children with SCD at risk for academic difficulties for whom psychoeducational interventions may enhance academic achievement.

Factors that contribute to post-treatment follow-up care for survivors of childhood cancer.

INTRODUCTION: As children complete cancer treatment and enter survivorship, follow-up care is critical to monitor for and treat relapses, secondary malignancies, and late effects of treatment. Relative contributions of cancer and treatment variables and sociodemographic factors in engagement with follow-up care are not fully understood. This study aimed to identify risk factors for inadequate follow-up care. METHODS: The sample included a cohort of 173 children (birth-18 years) diagnosed with cancer in 2004 and treated at a children's hospital. Sociodemographics (gender, patient current age, ethnic minority status, distance from hospital, type of insurance), cancer and treatment variables (patient age at diagnosis, type of cancer, treatment modality, time off treatment, relapse, on clinical trial protocol), and follow-up care through 2009 were gathered via the hospital tumor registry and medical charts. RESULTS: In simultaneous linear regression analysis (full model: F(12, 160) = 3.49, R2 = 0.21, p = 0.001), having a liquid tumor (p < 0.05), presence of relapse (p = 0.009), and shorter distance from hospital (p = 0.006) predicted total number of follow-up visits between completion of treatment and 5 years post-diagnosis. In simultaneous logistic regression analysis (full model: χ2 (12, N = 173) = 53.27, p < 0.001), being male (p = 0.077), having a brain tumor (p = 0.055), longer time off treatment (p = 0.004), and greater distance from hospital (p = 0.003) decreased the likelihood of completing a follow-up or survivorship visit between completion of treatment and 5 years post-diagnosis. In simultaneous linear regression analysis (full model: F(12, 160) = 4.52, R2 = 0.25, p = 0.001), non-White race (p = 0.001) and having public insurance (p = 0.002) predicted total number of no shows between completion of treatment and 5 years post-diagnosis. DISCUSSION/CONCLUSIONS: These results extend knowledge of health disparities in pediatric cancer follow-up care suggesting that cancer and treatment-related variables (type of cancer, relapse, number of treatment modalities) and sociodemographic factors (distance from treatment center, non-White race, public insurance) are important predictors of engagement in follow-up care. IMPLICATIONS FOR CANCER SURVIVORS: Survivors at risk for poor engagement may benefit from targeted interventions designed to increase likelihood of follow-up care.

Neurocognitive and family functioning and quality of life among young adult survivors of childhood brain tumors.

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