The toll of transition: Caregiver perceptions of family adjustment during the transition off pediatric cancer therapy.

OBJECTIVE: The role of transition-focused psychology appointments in managing the transition off therapy is unclear. The objective of this research was to explore caregiver perceived familial distress and the role of psychology in preparing families for transition. METHODS: Fifty-seven caregivers of youth, who finished treatment, completed an online questionnaire through a quality improvement project on experiences of families at transition. Twenty-two percent of caregivers had children who completed a transition-focused psychology consult and 63% completed a cognitive assessment at transition. Retrospective analyses were conducted assessing the association of psychology visits on caregiver perceptions of being informed of and prepared to manage transition-related challenges. RESULTS: Most caregivers reported experiencing adjustment concerns for family members. Caregivers of children completing a transition-focused psychology consult or cognitive assessment reported feeling more informed and greater preparedness to manage difficulties. Although decreased distress was not associated with the visit, those who felt more informed and prepared reported lower distress. CONCLUSIONS: Caregivers perceive transitioning off therapy as stressful for their family, though they experience decreased familial distress when informed of and prepared to manage transition-related challenges. These findings highlight the importance of psychosocial support at transition.

Predictors of narcolepsy and hypersomnia due to medical disorder in pediatric craniopharyngioma.

PURPOSE: Several studies describe sleep-wake disturbances in pediatric craniopharyngioma, but none have determined the prevalence or associated predictors of excessive sleepiness in this group after diagnosis and prior to post-operative observation or adjuvant radiotherapy. In this study, we report sleep-wake disturbances in children and adolescents with craniopharyngioma and associated clinical and treatment variables. METHODS: After surgery and prior to radiotherapy or observation, pediatric patients (n = 110) with craniopharyngioma ≥ 3 years old completed a baseline sleep clinic evaluation by a pediatric sleep specialist, polysomnography (PSG) and next-day multiple sleep latency test (MSLT). MSLT was limited to those ≥ 6 years old. Logistic regression models were used to determine the relationship between patient characteristics and the presence and type of hypersomnia. RESULTS: Amongst patients completing PSG and MSLT, 80% had polygraphic evidence of excessive daytime sleepiness. Hypersomnia due to medical condition was diagnosed in 45% and narcolepsy in 35%. Overweight or obese patients were more likely to be diagnosed with hypersomnia (P = 0.012) or narcolepsy (P = 0.009). Grade 2 hypothalamic involvement (HI) at diagnosis was associated with the diagnosis of narcolepsy (P = 0.0008). CONCLUSIONS: This study describes the prevalence and associated predictors of hypersomnia for patients with craniopharyngioma after surgical resection. HI was predictive of narcolepsy diagnosis, and a higher body mass index z-score was associated with hypersomnia due to medical condition and narcolepsy. We recommend that sleep assessment and intervention begin after surgical resection, especially in overweight or obese patients and those with extensive tumors.

Sleep problems during and after paediatric brain tumours.

Brain tumours are among the most common cancer diagnoses in paediatrics. Children with brain tumours are at risk of developing sleep problems because of direct and indirect effects of the tumour and its treatment, in addition to psychosocial and environmental factors. Sleep has an important role in physical and psychological wellbeing, and sleep problems are associated with many adverse outcomes. In this Review, we describe the state of the evidence regarding sleep in people with paediatric brain tumours, prevalence and types of sleep problems, risk factors, and effectiveness of interventions. Evidence shows that sleep problems, particularly excessive daytime sleepiness, are common in people with paediatric brain tumours, with high BMI emerging as a consistent predictor of sleep disruption. Further intervention studies are needed, and clinical evaluation of sleep is warranted for people with paediatric brain tumours.

Never Enough Time: Mixed Methods Study Identifies Drivers of Temporal Demand That Contribute to Burnout Among Physicians Who Care for Pediatric Hematology-Oncology Patients.

PURPOSE: Burnout is a syndrome of emotional exhaustion, depersonalization, and reduced personal accomplishment because of chronic occupational stress. Approximately one third of pediatric hematology-oncology physicians experience burnout. The goal of this mixed methods study was to determine the prevalence and drivers of burnout among physicians caring for pediatric hematology-oncology patients at our institution. MATERIALS AND METHODS: This mixed methods, cross-sectional study was conducted at a large academic cancer center. Validated survey instruments were used to measure burnout, job demands, experience with patient safety events, and workplace culture. Quantitative data informed development of a semistructured interview guide, and physicians were randomly selected to participate in individual interviews. Interviews were transcribed and analyzed via content analysis based on a priori codes. RESULTS: The survey was distributed to 132 physicians, and 53 complete responses were received (response rate 40%). Of the 53 respondents, 15 (28%) met criteria for burnout. Experiencing burnout was associated with increased temporal demand. Twenty-six interviews were conducted. Qualitative themes revealed that frequent meetings, insufficient support staff, and workflow interruptions were key drivers of temporal demand and that temporal demand contributed to burnout through emotional exhaustion and reduced personal accomplishment. CONCLUSION: Nearly one-third of participating physicians met criteria for burnout, and burnout was associated with increased temporal demand. Qualitative interviews identified specific drivers of temporal demand and burnout, which can be targeted for intervention. This methodology can be easily adapted for broad use and may represent an effective strategy for identifying and mitigating institution-specific drivers of burnout.

Plasma IGF-1 levels and cognitive dysfunction in children with obstructive sleep apnea.

BACKGROUND: Pediatric OSA is associated with substantial morbidity in cognitive function. However, for any given OSA severity level, altered cognitive performance may or may not be present. Since IGF-1 is neuroprotective, we hypothesized that higher systemic IGF-1 levels may identify children at lower susceptibility for cognitive morbidity. METHODS: Consecutive habitually snoring and non-snoring children ages 5-7 years were recruited from the community, and underwent overnight polysomnography, and neurocognitive testing and a blood draw the next morning. Snoring children were divided into OSA or no OSA, and OSA children were further subdivided into those with >=2 abnormal cognitive subtests and into those with normal cognitive scores. Plasma levels of IGF-1 were also measured using ELISA. RESULTS: Among snoring children without OSA, circulating IGF-1 was 910 +/- 110 pg/mL compared with 1070 +/- 240 pg/mL in those with OSA (p<0.01). However, IGF-1 was 540 +/- 70 pg/mL in children with OSA and cognitive deficits, compared to 1370 +/- 170 microg/L in children with OSA and normal cognitive scores (p<0.001). CONCLUSIONS: IGF-1 levels are higher in children with OSA, particularly in those who do not manifest neurocognitive deficits, suggesting that the magnitude of the IGF-1 response elicited by OSA may play a significant protective role against the neurocognitive dysfunction associated with OSA.

Cultural influences on the bedtime behaviors of young children.

BACKGROUND AND PURPOSE: This study was designed to assess potential relationships of race and socioeconomic status (SES) to bedtime behavior from a community sample of 2- to 7-year-old children. PATIENTS AND METHODS: A previously validated sleep questionnaire was administered to parents of children enrolled in the Jefferson County, Kentucky school system. The sleep behavior of African-American (n=973) and Caucasian (n=2398) children was analyzed. Median annual income of residential zip codes was used as a proxy for SES. RESULTS: Mean age was 4.8+/-1.1 years. Two composite 'sleep behavior scores' were generated related to excessive daytime sleepiness and sleep-related behavior. Children in the lower SES group had significantly more impaired 'sleep behavior scores' than those in the higher SES group, regardless of race or age. African-American children had later bedtimes than Caucasian children with similar rise times, resulting in significantly shorter sleep duration and more excessive daytime sleepiness, independent of SES and age. CONCLUSIONS: Cultural variables impact sleep-related behavior in children. Race and SES have independent relationships with sleep behavior. Independent of SES, African-American children sleep less due to later bedtimes. SES does play a role, however, in parentally reported sleep-related behavior problems. Thus, cultural variables such as race and SES are important modifiers of sleep behaviors in children and should be addressed in sleep education programs.

Normal sleep in children and adolescents.

This article reviews the normal development of sleep in infants, children, and adolescents, with specific focus on both the subjective and objective aspects of sleep. Notably, sleep duration decreases substantially from infancy through adolescence with increased consolidation of sleep to the nighttime period only. Sleep architecture exhibits developmental changes with decreases in slow-wave sleep and increases in stage 2 sleep from childhood through adolescence. Although the development of sleep is a dramatic and relatively rapid process during the first decades of life, changes in sleep continue across the life span.