Background Survivors of hematopoietic stem cell transplantation (HSCT) in childhood face a high risk of metabolic and cardiovascular disease as well as accelerated aging. Estimates of the prevalence of these severe late effects have varied widely because they have been based on small cohorts or mixed populations of patients that received transplantations for both malignant and nonmalignant diseases, and the co-occurrence of these late effects was not assessed. Therefore, the true burden of these complications in survivors of hematological malignancies remains unclear. Moreover, the role of potentially modifiable risk factors such as health behaviors and inflammation has not yet been determined. Objective This study aims to determine the prevalence of metabolic syndrome (MetS), endothelial dysfunction (ED), and accelerated aging and their risk factors, including treatment-related factors, inflammation, and health behaviors, in a large representative cohort of Dutch survivors of HSCT in childhood. Additionally, the study will examine the co-occurrence of these late effects. Methods This cross-sectional cohort study will combine 2 cohorts of survivors of HSCT in childhood for a hematological malignancy. The first cohort (cohort 1; n=102) consists of survivors who received transplantations before 2002 and were participants of the Dutch Childhood Cancer Survivor Study LATER 2 cohort, a nationwide cohort study focusing on late effects among long-term childhood cancer survivors. The second cohort will include survivors who received transplantations between 2002 and 2021 (cohort 2; projected n=120) and visited the late effects (LATER) outpatient clinic of the Princess Máxima Center between 2024 and 2026. Key outcomes will be the prevalence of MetS (≥3 of 5 clinical criteria), accelerated aging (3 of 5 biological and clinical criteria), and ED (assessed by endothelial peripheral arterial tonometry) and their co-occurrence. A broad range of potential and modifiable risk factors will be investigated, including treatment-related factors; transplant complications (eg, graft-versus-host disease); and health behaviors, including physical activity, dietary intake and status assessed with nutritional biomarkers, substance use, sun exposure, and relaxation. Results Patient recruitment started in January 2024 and is estimated to last until June 2026. As of September 2025, a total of 77 participants have been included in the study. Conclusions This study will provide insight into the prevalence of MetS, ED, and accelerated aging, as well as potentially modifiable risk factors, including those that have not been previously examined, among survivors of HSCT for hematological malignancies in childhood. The findings will inform surveillance guidelines and support the development of health behavioral and anti-inflammatory interventions to mitigate the risk of these severe late effects. International Registered Report Identifier (IRRID) DERR1-10.2196/77429
Fatigue is a common long-term complaint in childhood cancer patients and survivors. Treatment of pediatric bone sarcomas is intensive and can lead to physical, functional and psychosocial challenges; however, little is known about fatigue in this group. This study aimed to gain insight into fatigue and related demographic, medical, psychosocial, and lifestyle factors in pediatric bone sarcoma patients and survivors. Patients treated for pediatric bone sarcoma, ≥ 2 years post-diagnosis and after completion of treatment with no evidence of disease, completed PedsQL™ Multidimensional Fatigue Scale and PROMIS® fatigue measures. Prevalence and mean scores were compared with Dutch normative data using binomial tests, one-sample t-tests, and ANOVA. Linear regression analyses examined associations of fatigue with demographic and medical factors, psychological difficulties (measured with emotion thermometers), pain (measured with a numeric rating scale), and physical activity (using an accelerometer). In total, 139 patients participated. In children (N = 44), 51.6
OBJECTIVE:Pediatric cancer patients are at increased risk for sleep disturbances; however, there are no clinical practice guidelines for treating sleep disturbances in pediatric oncology, resulting in variable approaches to sleep management across clinicians. The current study surveyed clinicians regarding their approaches to assessing and treating sleep. METHODS:A total of 200 pediatric oncology clinicians participated in a REDCap survey about behavioral and medical sleep concerns assessed in their practice and related treatment approaches. RESULTS:Most clinicians (61%) reported assessing sleep when patients or families raised a concern, and 10% reported never assessing sleep. Clinicians rated behavioral difficulties with sleep onset (M = 3.00, SD = 1.08) and insomnia (M = 2.91, SD = 0.99) as the most problematic sleep concerns. Sleep hygiene was the most widely endorsed intervention across almost every sleep concern. Behavioral strategies were used with similar frequency between physicians/APPs compared to other clinicians [ORs = 0.61-1.25]. Pharmacology was used more frequently by physicians/APPs than other clinicians for behavioral sleep concerns [ORs = 0.19-0.36]. CONCLUSIONS:Relying on children and families to report concerns can be a missed opportunity to identify sleep disturbances early. The most endorsed treatment, sleep hygiene, is likely ineffective as a standalone treatment for complex sleep disturbances seen in oncology. It is possible that offering patients these simple but likely ineffective treatments alone may perpetuate long-term sleep disturbances and a lack of confidence in the ability to effectively treat sleep. Further research is needed to determine the most effective treatment approaches for behavioral sleep disturbances, informing clinical practice guidelines for pediatric oncology.
Fatigue is a common symptom in adolescents with a chronic health condition. Persistent fatigue and its impairments may be prevented by early intervention with Booster. Booster is a transdiagnostic blended care intervention that aims to increase fatigue-related self-efficacy (FSE). Through experience sampling methodology (ESM) via the Booster smartphone app, Booster helps users gain personalised insight into the relationship between their thoughts, feelings, activities, and fatigue. Based on this insight and shared-decision making, the participant and executive investigator set personal lifestyle goals, such as more exercise and fewer daytime naps. The previous version of Booster, PROfeel, has already been shown effective in treating persistent fatigue in youth. Booster’s value as an early intervention has yet to be studied. To better suit this aim and align with user preferences, the new Booster app includes features like goal attainment assistance, daily outcome tracking, and motivating game mechanics (e.g., rewards and a minigame). This protocol describes a study to examine the effect of Booster on FSE and the other study outcomes fatigue, school participation, life satisfaction, and perceived health. The secondary aim is to explore individual differences regarding (moment of) changes in outcomes during the Booster intervention. It is a single-centre study with a multiple baseline single-case experimental design (SCED). We aim to include twenty adolescents ages 12 to 18 years with a chronic health condition and fatigue. Booster’s effect on outcomes will be measured with a daily survey during Phase A (baseline) and B (intervention). The start of phase B will be randomised across cases. The effect will be assessed with the multiple baseline single-case randomisation test (SCRT) at the group level. Additionally, at the single-case level, we will explore change using permutation distancing tests (PDTs), single-case interrupted time series analysis (ITSA), and change point analyses. Also, we will assess participant characteristics associated with (long-term) improvements. Booster uses innovative methods by combining tailored ESM-insight, mHealth and healthcare professional support. Group-level analysis, strengthened by single-case observational analyses, will evaluate the effectiveness of ESM-supported blended care as an early fatigue intervention and identify its potential working mechanisms. It lays the groundwork for implementing ESM tools in clinical practice. ClinicalTrials, NCT06562335. Registered on 24 July 2024, https://clinicaltrials.gov/study/NCT06562335 .
INTRODUCTION:Infection causes significant morbidity and mortality in pediatric acute myeloid leukemia (pAML). This study describes the incidence and risk factors of bloodstream infection (BSI) and invasive fungal infection (IFI) in pAML. METHODS:A retrospective chart review was performed of patients treated according to the ANLL-97/AML-12 (N = 116), AML-15 (N = 60), or DB AML-01 (N = 67) protocols between 1998 and 2014. Cumulative incidence was analyzed for infectious outcomes (any BSI, viridans group streptococci [VGS-BSI], Gram-negative rod [GNR-BSI], IFI). Risk factors were analyzed in multivariable models. Recurrent event analyses were performed to evaluate whether previous infection(s) were related to subsequent infection. RESULTS:The cumulative incidence of any BSI was 78%, VGS-BSI 35%, GNR-BSI 15%, and IFI 11% through Day 150. Incidence of GNR-BSI decreased over time; AML-15 hazard ratio ([HR] 0.37, 95% confidence interval [CI]: 0.14-0.98, p = 0.045) and DB AML-01 (HR 0.42, 95% CI: 0.18-0.97, p = 0.042) compared to ANLL-97/AML-12. White blood cell counts ≥20 × 109/L at diagnosis and older age were associated with lower infection risk. Recurrent event analyses showed a higher risk of subsequent BSI for patients who had two or more prior BSIs. CONCLUSION:Despite efforts to improve supportive care in pAML, only GNR-BSI cumulative incidence declined over time. Future studies should continue working toward decreasing the incidence of infection while maintaining treatment efficacy.
Pediatric cancer diagnosis and treatment reduce Health-Related Quality of Life (HRQoL). The Pediatric Quality of Life (PedsQL) Cancer Module is the most commonly used cancer specific HRQoL instrument, but most studies included relatively small cohorts and no reference scores are available. The development of a PedsQL Cancer Module benchmark, based on a large population of pediatric cancer patients, may benefit future research by providing insight into issues children encounter during treatment or clinical trials. A benchmark would also allow for earlier identification of patients who may benefit from targeted interventions in HRQoL monitoring programs. The primary aim of this study was therefore to provide benchmark scores from a large national cohort for use in pediatric oncology care and research. Secondary aims were to compare scores between subgroups (age, sex, and diagnosis group) and to describe the prevalence of impaired HRQoL. Data was collected from a national HRQoL monitoring program and extracted from medical records. HRQoL was measured with the PedsQL Cancer Module during treatment for childhood cancer, approximately 3 months after diagnosis. Comparisons were made for sex, age and diagnosis groups: hemato-oncology (HO), central nervous system-tumors (CNS), and solid tumors (ST) using the Mann-Whitney U test for the different subscales. Effect sizes were calculated. Impairment was defined on item level using descriptive statistics. Proxy-reports of 492 children (age 2–7 years) and self-reports of 500 children (age 8–18 years) were available. HRQoL differences between age groups, sex and diagnosis groups were small, with the exception of nausea. On the nausea subscale there was a medium effect size difference with children with ST reporting more problems than children with CNS. Impaired HRQoL was most often reported on items reflecting nausea and procedural anxiety. Early in the cancer trajectory, there are only minor differences between subgroups based on age, sex, and diagnosis group. These results from a large national cohort can be used as benchmark data in future clinical trials, studies and clinical assessments, and offer and adapt support targeted for improving HRQoL related to treatment for childhood cancer.
BACKGROUND:Insomnia is common during and after childhood cancer and associated with negative health outcomes and impaired quality of life. Many adolescents and young adults do not receive treatment. Internet-delivered cognitive behavioral therapy for insomnia (iCBT-i) can fill this gap. This study assesses the effectiveness of the iCBT-i intervention "iSleep youth". METHODS:Patients (12-30 years old) with an Insomnia Severity Index ≥8, ≥6 months after treatment, and <10 years after diagnosis were 1:1 randomized to iSleep youth or the wait list-control group. iSleep youth consists of five online sessions with a coach. Outcomes were sleep efficiency (actigraph-based), insomnia, fatigue, and health-related quality of life (HRQOL). Differences over time between iSleep youth and controls, 3 months (T3) and 6 months (T6) from baseline, were assessed with linear mixed models, controlling for age, sex, and time since end of treatment. iSleep youth also had a follow-up measurement after 12 months (T12). RESULTS:Fifty-four (response rate, 49%) patients participated: 68.9% females, mean age, 18.5 years (SD = 3.5), and mean time since end of treatment 3.8 years (SD = 2.3). No significant effects between the two groups were found for sleep efficiency. However, iSleep youth had a beneficial effect on insomnia severity at T3 (β = -0.79) and T6 (β = -0.55), on fatigue at T3 (β = -1.08) and T6 (β = -0.52) and on HRQOL at T3 (β = 0.46) and T6 (β = 0.62). The scores did not change from T6 to T12 in iSleep youth. CONCLUSIONS:iSleep youth is effective in treating insomnia and concurrent fatigue in adolescents and young adults after childhood cancer and should be implemented.
ABSTRACT Purpose A healthy lifestyle may prevent or mitigate late effects in childhood, adolescent and young adult (CAYA) cancer survivors. To support survivors in adopting healthier behaviours, the PanCareFollowUp (PCFU) Lifestyle intervention was developed, encompassing 4 months of online lifestyle coaching aimed at achieving a personal lifestyle goal. The aims of this study were to (1) determine the efficacy of this intervention on lifestyle outcomes over time and (2) identify predictors for goal achievement. Patients and Methods Fifty‐eight survivors were enrolled. Outcomes were assessed at baseline (T0), after 4 months of coaching (T1) and after 4 months of follow‐up (T2). The primary outcome included the percentage of survivors successful in achieving and sustaining their goal, whereas secondary outcomes included differences in body mass index (BMI), diet and physical activity. To evaluate the adjusted, longitudinal effects on secondary outcomes, linear mixed models were estimated. Predictors for goal achievement were identified through logistic regression analysis. Results At T1 and T2, 68% and 76% of goals were achieved or sustained, respectively. Mean differences between T2 and T0 showed significant improvements in BMI (−0.5 kg/m2), diet (−0.6 points) and physical activity (+7.7 h/week). Estimation of multivariable models also showed positive effects. Participants with a lower BMI and fewer depressive feelings at baseline were more likely to achieve and/or sustain their goals at T2. Conclusion Findings suggest that the PCFU Lifestyle intervention supports survivors in making lifestyle changes. Results can be used to inform a subsequent randomised intervention study and integrate lifestyle coaching into care. Trial Registration: International Clinical Trial Registry Platform (ICTRP) number: NL8932 (ICTRP Search Portal [who. int]). Registered on 29 September 2020
Sleep concerns are common during pediatric cancer treatment and can last into survivorship. The current systematic review sought to identify intervention studies that addressed sleep as a primary or secondary outcome during pediatric cancer treatment up to 5 years after completing treatment. Quality assessment was rated using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) system. The review identified 16 studies with a total of 943 participants that tested a wide range of interventions including psycho-educational, stress management techniques, medications, and physical activity. Most studies included tested interventions in small samples. None of the included studies had a high risk of bias for all domains, but all included studies had a high risk of bias for at least two risk domains. Several feasible pilot studies were identified that warrant further research to test efficacy. Implications for future research and clinical practice to manage sleep concerns are discussed.
AbstractBackgroundHealthy behaviors are paramount in preventing long‐term adverse health outcomes in childhood, adolescent, and young adult (CAYA) cancer survivors. We systematically reviewed and synthesized existing literature on barriers, facilitators, and other factors associated with health behaviors in this population.MethodsMEDLINE and PsycInfo were searched for qualitative and quantitative studies including survivors aged 16–50 years at study, a cancer diagnosis ≤25 years and ≥2 years post diagnosis. Health behaviors included physical activity, smoking, diet, alcohol consumption, sun exposure, and a combination of these behaviors (defined as health behaviors in general).ResultsBarriers, facilitators, and other factors reported in ≥2 two studies were considered relevant. Out of 4529 studies, 27 were included (n = 31,905 participants). Physical activity was the most frequently examined behavior (n = 12 studies), followed by smoking (n = 7), diet (n = 7), alcohol (n = 4), sun exposure (n = 4), and health behavior in general (n = 4). Relevant barriers to physical activity were fatigue, lack of motivation, time constraints, and current smoking. Relevant facilitators were perceived health benefits and motivation. Influence of the social environment and poor mental health were associated with more smoking, while increased energy was associated with less smoking. No relevant barriers and facilitators were identified for diet, alcohol consumption, and sun exposure. Barriers to healthy behavior in general were unmet information needs and time constraints whereas lifestyle advice, information, and discussions with a healthcare professional facilitated healthy behavior in general. Concerning other factors, women were more likely to be physically inactive, but less likely to drink alcohol and more likely to comply with sun protection recommendations than men. Higher education was associated with more physical activity, and lower education with more smoking.ConclusionThis knowledge can be used as a starting point to develop health behavior interventions, inform lifestyle coaches, and increase awareness among healthcare providers regarding which survivors are most at risk of unhealthy behaviors.
BACKGROUND:Fatigue is a commonly reported clinical symptom, yet research on fatigue in children with severe asthma is missing. We aimed to explore the extent of fatigue in severe pediatric asthma and identify associated factors. METHOD:This study was conducted within the Pediatric Asthma Non-Invasive Diagnostic Approaches (PANDA), an observational cohort of 6- to 17-year-old Dutch children with severe asthma. The Pediatric Quality of Life Inventory Multidimensional Fatigue Scale (PedsQL™-MFS) was used to measure self-reported fatigue. Fatigue levels were compared with a general pediatric Dutch population using linear regression, and quantifying the prevalence of "fatigued" (-2 < Standard deviations [SD] ≤ -1) and "severely fatigued" (SD ≤ -2) children. Secondly, we performed linear regression analyses to explore whether fatigue levels were independently associated with asthma attacks, comorbidities, medication, pulmonary function, symptom control, and asthma-related quality of life (QoL). RESULTS:Severe pediatric asthma patients (n = 78, mean age 11.8 ± 3.1 years) reported significantly more fatigue than Dutch peers (n = 328, mean age 11.8 ± 3.2 years) mean difference in z-score: -0.68; 95%CI -0.96, -0.40. In the severe asthma group, 28.2% scored as "fatigued" and 15.4% as "severely fatigued," compared with 14.0% and 3.4% in the general population. In pediatric asthma patients, asthma-related QoL (β = 0.77, p < .01, ΔR2 = .43), symptom control (β = 0.56, p < .01, ΔR2 = .24) and a dysfunctional breathing pattern (β = -0.36, p < .01, ΔR2 = .12) were most strongly associated with fatigue scores. CONCLUSION:Fatigue is a common symptom in children with severe asthma and is associated with multiple clinical factors and patient-reported outcomes. It should be considered as an important treatment target.
Background There is a knowledge gap regarding health-related quality of life (HRQOL) in childhood cancer patients below 2 years of age. The aim of this study was therefore to compare HRQOL of young children during and after treatment for cancer, to healthy controls, and to investigate effects of biopsychosocial factors. Procedure The study is based on data from an online monitoring program. Parent-proxy reports of HRQOL in 205 children aged 12–24 months were compared to 108 healthy children. The parents filled out the TNO-AZL Preschool Quality of Life questionnaire for young children, which consists of 12 subscales, in addition to a parental distress thermometer. Results Participants undergoing treatment had less favorable HRQOL than children after treatment for eight of the subscales. They also had less favorable HRQOL than healthy children for seven scales, while the only significant difference between children off treatment and healthy controls was for motor functioning. For ten subscales, there were significant relationships between biopsychosocial variables and HRQOL outcomes. Parental distress and treatment with immunotherapy were the variables most frequently associated with lower HRQOL. Conclusions Parental distress should be considered when monitoring young childhood cancer patients. Treatment with immunotherapy is likely to be a marker of disease severity and might represent other underlying factors affecting HRQOL. The association between immunotherapy and HRQOL therefore needs more research. While there was a significant difference depending on treatment status, it cannot be concluded that this represents an improvement in HRQOL after end of treatment.
BACKGROUND:Children and adolescents treated for a brain tumor suffer from more fatigue than survivors of other types of childhood cancer. As tumor location might be predictive of fatigue, our aim was to investigate the longitudinal development of fatigue in children with brain tumors and risk factors for fatigue separately for different tumor locations.METHODS:Fatigue was assessed 1235 times for 425 participants. Self-report versions of PedsQL Multidimensional Fatigue Scale were used to repeatedly assess fatigue from the end of treatment up to 8 years later. Mixed models were used to analyze fatigue over time and determinants separately for infratentorial (N = 205), supratentorial hemispheric (N = 91), and supratentorial midline tumors (N = 129).RESULTS:Cognitive fatigue worsened with time, while sleep-rest and general fatigue first decreased and then increased. There was no difference in fatigue between the tumor locations, but the risk factors differed when stratified by location. Radiotherapy was associated with more fatigue for infratentorial tumors, and centralization of care was associated with less fatigue for the supratentorial midline tumors. For supratentorial hemispheric tumors, female sex was associated with more fatigue. Higher parental education was associated with less fatigue regardless of tumor location.CONCLUSIONS:The development of fatigue seems to be more related to sociodemographic and treatment variables than to tumor location. Healthcare providers need to be aware that fatigue may develop in the years following end of treatment, and that patients with a low/middle educational family background might be more vulnerable and in need of targeted support.
CONTEXT:During treatment, children with acute lymphoblastic leukemia (ALL) receive high doses dexamethasone, which induce acute side effects. OBJECTIVE:To determine the influence of a 5-day dexamethasone course on changes in leptin, fat mass, BMI, hunger, sleep, and fatigue and to explore associations between these changes. METHODS:Pediatric ALL patients were included during maintenance treatment. Data were collected before (T1) and after (T2) a 5-day dexamethasone course (6 mg/m2/day). At both time points, BMI, fat mass (bioelectrical impedance analysis), and leptin were assessed, as well as parent-reported questionnaires regarding hunger, fatigue, and sleep problems. Changes between T1 and T2 were assessed using paired tests. Correlation coefficients were calculated to assess associations between these changes (Delta scores: T2-T1). Univariable regression models were estimated to study associations between covariates and elevated leptin. RESULTS:We included 105 children, with median age 5.4 years (range, 3.0-18.8). Leptin and fat mass, as well as hunger scores, fatigue, and sleep deteriorated after 5 days of dexamethasone (P < .001), in contrast to BMI (P = .12). No correlations between delta leptin and delta fat mass, BMI, hunger, fatigue, or sleep were found. Elevated leptin on T1 was associated with older age (odds ratio [OR] 1.51; 95% CI, 1.28-1.77), higher fat mass (OR 1.19; 95% CI, 1.07-1.33), and earlier maintenance week (OR 0.96; 95% CI, 0.92-0.99). CONCLUSION:Five days of high-dose dexamethasone treatment led to direct and significant changes in leptin, hunger scores, and fat mass. Since children with ALL are at increased risk for metabolic adverse events, understanding underlying mechanisms is important, and a dexamethasone-induced state of acute leptin resistance might play a role.
Background: Children diagnosed with brain tumors are at risk to develop neurocognitive problems. Post-traumatic stress and sleep have been associated with poorer neurocognitive outcomes in the general population, and could be potential targets for intervention in brain tumor patients. Therefore, this study examined neurocognitive functioning in children newly diagnosed with a brain tumor and the associations between posttraumatic stress and sleep with neurocognitive outcomes. Methods: Children 6-16 years old who were newly diagnosed with a brain tumor completed questionnaires on post-traumatic stress and sleep, actigraphy for sleep, and tests for neurocognitive outcomes. One-sample t-tests and chi-square tests were used to compare neurocognitive scores with age norms. Multivariable regression examined associations between post-traumatic stress, sleep, demographics, and medical factors associated with neurocognitive functioning. Results: Of all eligible children, 60 patients with newly diagnosed brain tumors were included, at an average of 51 days after diagnosis (67% male, mean = 11.5 years at diagnosis). Compared to age norms, patients with brain tumors scored lower on measures of attention, inhibition, and verbal memory (meanZ = -0.40 to -0.98, p < .05). History of obstructive hydrocephalus was associated with poorer attention (p < .05) and processing speed (p < .05), posterior fossa tumor location was associated with poorer working memory (p < .01), and starting chemotherapy or radiotherapy treatment before the assessment was associated with poorer verbal memory (p < .05). Post-traumatic stress and sleep were not associated with neurocognitive outcomes at this phase (p > .20). Conclusion: A subgroup of children with newly diagnosed brain tumors shows deficits in neurocognitive functioning, which highlights the importance of early monitoring to identify children at-risk for problems. Hydrocephalus, posterior fossa tumor location, and starting treatment, but not post-traumatic stress and sleep, are associated with poorer neurocognitive performance at this phase. Longitudinal research will be important for identifying biopsychosocial factors that may be associated with cognition over time.
Health-related quality of life (HRQL) is a multidimensional concept which captures the individual’s perception of treatment burden. Evaluating HRQL during treatment for childhood cancer provides insight into the burden of the treatment from the child’s and/or parent’s perspective. In this review, we aimed to describe Patient-Reported Outcome Measures (PROMs) used to measure HRQL during treatment, describe how HRQL of paediatric oncology patients differs from the healthy norms, and describe biopsychosocial variables that are related to HRQL during treatment. We conducted a systematic review of HRQL of childhood cancer patients on treatment, according to PRISMA guidelines. We searched PubMed, EMBASE, PsycINFO and CINAHL, and after full-text review we included 85 papers (84 studies) with 7311 participants. These studies were conducted in 30 different countries and utilised 23 different PROMs. The most commonly used PROM was Pediatric Quality of Life generic core scales. While many different PROMs were used in the included studies, none of them covered all aspects of HRQL. We identified a lack of research regarding the effects of immuno- and CAR-T therapy and coping strategies of the child and/or the parents on HRQL, as well as a knowledge gap regarding HRQL in children below 2 years of age. All studies reported lower HRQL outcomes for patients in comparison to healthy children of siblings. Overall, children on treatment compared to off treatment reported lower HRQL. Described from a biopsychosocial perspective, we found inconsistent associations between other variables and HRQL outcomes. This can be explained by different studies classifying different groups differently. To be able to compare HRQL outcomes of childhood cancer patients internationally we recommend the use of a paediatric cancer PROM core set.
BACKGROUND/OBJECTIVES:Children treated for cancer are at risk to develop cognitive problems. Insight in underlying associations with emotional functioning and fatigue can be used to optimize interventions. We therefore aim to study emotional functioning, fatigue, and cognitive functioning in children postcancer treatment and investigate whether fatigue mediates the relationship between emotional and cognitive functioning.DESIGN/METHODS:Emotional functioning, fatigue, and cognitive functioning were assessed in children post-cancer treatment using subscales of the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales, Multidimensional Fatigue Scale and Cognitive Functioning Scale. A one sample t-test was used to compare outcomes with general population peers and mediation analysis was used to address the effect of fatigue on the relationship between emotional and cognitive functioning.RESULTS:A total of 137 children (mean age: 13.6, SD ± 3.3 years; mean time since end of treatment: 7.1 months, SD ± 5.9) participated. Lower scores on emotional functioning (Cohen's d [D]: 0.4), fatigue (D: 0.8) and cognitive functioning (D: 0.6) were found (p < .001) in children post-cancer treatment than in peers. A medium association was found between emotional and cognitive functioning (standardized regression coefficient [β]: 0.27, p < .001), which was mediated by fatigue (β = 0.16).CONCLUSIONS:Outcomes on emotional and cognitive functioning are decreased and fatigue is increased in children postcancer treatment. Fatigue mediates the relationship between emotional and cognitive functioning. Our results show the importance to focus on fatigue amongst stress as a target for intervention to improve cognitive functioning.
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.