Background and Aims

Children with brain tumors are at risk to develop sleep problems. The prevalence of sleep problems and whether they arise early or at a later stage remains unclear, although this information could be used to provide timely interventions. The aim is to examine sleep and contributing factors shortly after brain tumor diagnosis.

Methods

Patients with a primary brain tumor aged 6-16 years old were recruited for a longitudinal study. Inclusion started January 2020 and is expected to be completed September 2021. Sleep was measured for the first time within three months after diagnosis by actigraphy and questionnaires. Actigraphic outcomes were compared to 47 age-matched healthy Dutch children with t-tests. Self-reports and parent-reports (both 6-16 years) of PROMIS questionnaires (Sleep Disturbance (SD) and Sleep Related Impairment (SRI)) were compared to healthy Dutch children using t-tests. T-scores ≥1SD were considered in the clinical range. The influence of age and sex on disrupted sleep were explored with linear regression models.

Results

On average, patients (N=41, 70% male, 73% response rate, 24% supratentorial tumors, 39% midline tumors, 37% infratentorial tumors) were assessed 1.8 months after diagnosis (SD=1.1) at the age of 12.1 years (SD=2.9). In patients compared to controls, actigraphy showed shorter sleep onset latency ((SOL), 8 minutes earlier, p=0.03). No differences in sleep duration or efficiency were found. Parents reported higher child SD (mean 53.7 vs. 50.0, p=0.03) and SRI (mean 54.8 vs. 50.0, p=0.01), with 29% and 37% in the clinical range, respectively. No differences in self reports or for age and sex were found.

Conclusions

These preliminary results showed that shorter SOL and higher parent reported child SD and SRI may reflect fatigue, indicating sleep problems may already occur close to diagnosis and should be monitored systematically. The follow-up of this cohort will provide more insight into the development of sleep problems.

Background and Aims

Children with cancer experience symptoms of anxiety and depression at much higher rates than healthy children. While emotional distress is associated with lower health-related quality of life in children with cancer, we do not understand the patterns, correlates, and potential causes of these symptoms. This information is critical to develop and implement appropriate treatments. This study sought to describe patient-reported emotional distress in children with advanced cancer and associated factors.

Methods

Children (age at enrollment 2-18; N=104) or their parents reported on symptoms weekly to monthly using the PediQUEST Memorial Symptom Assessment Scale (PQ-MSAS) and the Pediatric Quality of Life Inventory 4.0 as part of a randomized controlled trial. The primary outcome was emotional distress (yes/no response to any of the PQ-MSAS emotional distress items (nervousness, sadness, worry)). High distress was defined as at least one reported symptom above the established cut point. Univariate generalized linear mixed models were used to examine associations between any emotional distress and demographic factors, disease and treatment characteristics, physical symptoms, and quality of life. All models were adjusted for intervention arm.

Results

920 surveys were reported by the patients or their parents and 913 had complete information and were included in analyses. Emotional distress was reported in 371 (41%) surveys of which 281 (76%) reported high distress. Reporting of any emotional symptom was significantly associated with a change in disease status in the past 10 days (p=.006), inpatient admission in the past 10 days (p=.007), less time since last disease progression (p=.002), reports of pain (p<.0001), drowsiness (p<.0001), nausea (p=.03), and anorexia (p=.01), and more difficulty functioning in school (p=.01).

Conclusions

Emotional distress is prevalent among children with advanced cancer and is commonly highly distressing. While treating physical symptoms may mitigate some emotional distress, interventions directly targeting psychological symptoms are also warranted.

Background and Aims

Infancy and early childhood is a time of rapid brain development which is foundational for physical and mental wellbeing throughout the lifespan. However, treatment and parental psychosocial effects on infants and toddlers with cancer are poorly understood. The current study aims to examine how treatment factors (e.g., time since diagnosis) and parental psychosocial factors (e.g., parental stress) impacts quality of life (QOL) longitudinally in young children (0-4 years) diagnosed with cancer.

Methods

Children (n=19 male, 54.3%) 0-48 months of age (median 31.06 months) on active cancer treatment (mean time since diagnosis [days] 356.46) and their parents (n=33 female, 94.3%) were recruited. Parents completed questionnaires at three time points (baseline[T1], 6 months[T2], 12 months[T3]) related to parent mental health (Brief Symptom Inventory) and stress (Parenting Stress Index), and child QOL (Pediatric Quality of Life Inventory). Data on treatment related factors were collected through medical charts. Demographic information was collected at T1.

Results

A multiple regression model was used to predict child QOL and parental mental health at 12 months using the following predictors: child sex, child age[FSMS1] at T1, parental post-traumatic stress[T1], parental education, and child QOL[T1]. The multiple regression model was significant for predicting child QOL, F(6, 14) = 232.58, p=0.037, adj. R²=0.390. QOL at T1 emerged as a significant predictor of QOL at T3 (p=0.027) where higher QOL at baseline predicted higher QOL 12 months later.

With respect to parent mental health, the multiple regression model was significant F(6, 14)=279.38, p=0.032, adj. R²=0.406. Parental post-traumatic stress[T1] (p = 0.003) significantly predicted parent mental health where greater post-traumatic stress at T1 predicted worse mental health [FSMS1] at T3.

Conclusions

It is important to identify modifiable targets for intervention to improve the QOL and mental health for families of infants with cancer within the first 12 months of diagnosis.

Background and Aims

Insomnia entails difficulty with initiating or maintaining sleep which considerably impacts daily functioning. It is associated with negative health outcomes and impaired quality of life, which poses a health risk for adolescents and young adults who had cancer. Knowing who is at risk enables targeted treatment. This study’s aim is to determine the prevalence of insomnia in adolescents and young adults across all cancer diagnoses and associated risk factors.

Methods

Patients (12-30 years old) who were at least 6 months after treatment for diverse childhood cancer types and within 10 years after diagnosis were invited to fill out questionnaires including: the Insomnia Severity Index (ISI-score 0-28) and sociodemographic/medical questions. Logistic regression was used to evaluate risk factors. Aimed inclusion rate is 500 participants, which will be reached summer 2021.

Results

382 patients participated thus far (response 52.5%): 49.7% females, mean age 17.2 years, 48.2% hemato-oncology, 30.4% solid tumors, 21.5% neuro-oncology. Overall, 136 (35.6%) reported insomnia symptoms, which varied in severity: 22.3% subthreshold (ISI-score 8-14), 11.8% moderate-severe (ISI score 15-21) and 1.6% severe (ISI-score 22-28). Of those with insomnia, 55.0% would like to receive treatment. Risk factors for insomnia entailed: females (OR 2.49, 95% CI 1.61-3.84), young adults 19-26y (OR 1.67; 95% CI 1.08-2.59) and older age at diagnosis (OR 1.08, 95% CI 1.0-1,16). No association was found with diagnosis or treatment type. In the total group 15.2% used sleep medication, mostly melatonin (12.0%). However, the majority of the sleep medication users (66.7%) still suffered from insomnia.

Conclusions

Insomnia is common after treatment for childhood cancer, independent from cancer diagnosis or treatment type. Females, young adults, and those with an older age at diagnosis seem at risk. Considering the patients’ wish for treatment of their sleep problems and the frequent use of sleep medication with seemingly insufficient effects, more efficient treatment options are warranted.