Changes in sleep and fatigue in newly treated pediatric oncology patients.

BACKGROUND: Fatigue has been reported as one of the most distressing symptoms in oncology patients, yet few have investigated the longitudinal course of sleep and fatigue in newly diagnosed pediatric oncology patients. PROCEDURE: To longitudinally assess presence and changes of sleep complaints and fatigue, we administered questionnaires designed to measure sleep complaints, sleep habits, daytime sleepiness, and fatigue to parents of pediatric oncology patients ages 2-18 and to pediatric oncology patients, themselves, ages 8-18 within 30 days of diagnosis (n = 170) and again 8 weeks later (n = 153). RESULTS: Bedtimes, wake times, and sleep duration remained relatively stable across the first 8 weeks of treatment. Sleep duration and fatigue were not related for the entire sample, though children's self-reported sleep duration was positively correlated with fatigue only at the baseline time point. Parent reports of fatigue significantly decreased for leukemia patients but remained rather high for solid tumor and brain tumor patients. CONCLUSIONS: Because fatigue remained high for solid tumor and brain tumor patients across the initial 8 weeks of treatment, this may highlight the need for intervention in this patient population.

Bereaved parents' intentions and suggestions about research autopsies in children with lethal brain tumors.

OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor tissue by autopsy of children with diffuse intrinsic pontine glioma. In the study, parents completed a questionnaire after their child's death to describe the purpose for, hopes (ie, desired outcomes of), and regrets about their participation in autopsy-related research. Parents also suggested ways to improve autopsy-related discussions. A semantic content analytic method was used to analyze responses and identify themes within and across parent responses. RESULTS: Responses from 33 parents indicated that the main reasons for participating in this study were to advance medical knowledge or find a cure, a desire to help others, and choosing as their child would want. Parents hoped that participation would help others or help find a cure as well as provide closure. Providing education/anticipatory guidance and having a trusted professional sensitively broach the topic of autopsy were suggestions to improve autopsy discussions. All parents felt that study participation was the right decision, and none regretted it; 91% agreed that they would make the choice again. CONCLUSION: Because autopsy can help advance scientific understanding of the disease itself and because parents reported having no regret and even cited benefits, researchers should be encouraged to continue autopsy-related research. Parental perceptions about such studies should be evaluated in other types of pediatric diseases.