High prevalence of parent-reported sleep problems in pediatric patients with acute lymphoblastic leukemia after induction therapy

Contains fulltext : 219851.pdf (Publisher’s version ) (Open Access)OBJECTIVE: To assess sleep problems (prevalence and predictors) in pediatric patients with acute lymphoblastic leukemia (ALL) after the most intensive phase of therapy (induction). METHODS: Patients (>/=2 years) treated according to the Dutch ALL-11 protocol were included. Sleep was measured using parent-reports and self-reports (Children's Sleep Habits Questionnaire; CSHQ) and actigraphy. Parental sleep (Medical Outcome Study Sleep Scale) and distress and parenting problems (Distress Thermometer for Parents) were assessed with questionnaires. Z-scores were calculated for total CSHQ scores using age-appropriate scores of healthy Dutch children. The prevalence of sleep problems (defined as a Z-score > 1) in patients with ALL was compared to healthy children (chi-square tests). Actigraphic sleep estimates were collected in healthy Dutch children (n = 86, 2-18 years) for comparison with patients (linear regression). Determinants of parent-reported child sleep (total CSHQ Z-score) were identified with regression models. RESULTS: Responses were collected for 124 patients (response rate 67%), comprising 123 parent-reports, 34 self-reports, and 69 actigraphy assessments. Parents reported sleep problems in 38.0% of the patients compared to 15.2% in healthy children (P < .001). Patients reported fewer sleep problems themselves: 12.1% compared to 15.8% in healthy children (P = .33). Total time in bed (B (95% CI): 22.89 (9.55-36.22)) and total sleep time (B (95% CI):16.30 (1.40-31.19)), as derived from actigraphy, were significantly longer in patients. More parent-reported child sleep problems were predicted by parenting problems, more parental sleep problems, bedroom sharing, and child's sleep medication use (explained variance: 27.4%). CONCLUSIONS: Systematic monitoring of child and parental sleep and implementation of effective interventions may be a gateway to improve quality of survival in pediatric ALL.01 april 202

Sleep-wake rhythm disruption is associated with cancer-related fatigue in pediatric acute lymphoblastic leukemia

Contains fulltext : 220835.pdf (Publisher’s version ) (Open Access)STUDY OBJECTIVES: To compare sleep-wake rhythms, melatonin, and cancer-related fatigue in pediatric patients with acute lymphoblastic leukemia (ALL) to healthy children and to assess the association between sleep-wake outcomes and cancer-related fatigue. METHODS: A national cohort of ALL patients (2-18 years) was included. Sleep-wake rhythms were measured using actigraphy and generated the following variables: Interdaily stability (IS): higher IS reflects higher stability; intradaily variability (IV): lower IV indicates less fragmentation; L5 and M10 counts: activity counts during the five least and 10 most active hours, respectively; and relative amplitude (RA): the ratio of L5 and M10 counts (higher RA reflects a more robust rhythm). The melatonin metabolite, 6-sulfatoxymelatonin (aMT6s), was assessed in urine. Cancer-related fatigue was assessed with the PedsQL Multidimensional Fatigue Scale. Using regression models sleep-wake rhythms, aMT6s, and cancer-related fatigue were compared to healthy children and associations between sleep-wake outcomes and cancer-related fatigue were assessed in ALL patients. RESULTS: In total, 126 patients participated (response rate: 67%). IS, RA, and M10 counts were lower in patients compared to healthy children (p < 0.001). aMT6s levels were comparable to healthy children (p = 0.425). Patients with ALL were more fatigued compared to healthy children (p < 0.001). Lower IS, RA and M10 counts and higher IV were significantly associated with more parent-reported cancer-related fatigue. Associations between sleep-wake rhythms and self-reported cancer-related fatigue were not statistically significant. CONCLUSIONS: Sleep-wake rhythm impairment is associated with more cancer-related fatigue in pediatric ALL patients. Interventions aimed to improve sleep hygiene and encourage physical activity may reduce cancer-related fatigue

Health-related quality of life and its determinants during and after treatment for paediatric acute lymphoblastic leukaemia:a national, prospective, longitudinal study in the Netherlands

OBJECTIVES: Health-related quality of life (HRQoL) is impaired in paediatric patients with acute lymphoblastic leukaemia (ALL). Over the past decades, ALL treatment has successfully been adjusted to the risk of relapse, which is now reflected by the stratification of patients into three risk groups who receive treatment of differing intensities. This study is the first to evaluate the longitudinal course of HRQoL in light of these adjustments and identify determinants of HRQoL. DESIGN: Two prospective, national cohort studies (add-on studies within the two most recent treatment protocols for children with ALL (ALL-10 and ALL-11)). SETTING: Dutch paediatric oncology hospitals between October 2006 and October 2009 (ALL-10) and between August 2013 and July 2017 (ALL-11).PARTICIPANTS: Patients with ALL (2-18 years) are treated according to the ALL-10 or ALL-11 treatment protocol. Patients treated according to the ALL-10 protocol only completed a cancer-specific QoL measure and patients treated according to the ALL-11 protocol completed both a cancer-specific and generic QoL measure (see below). OUTCOME MEASURES: HRQoL, assessed with parent-proxy questionnaires (PedsQL Generic and Cancer module) within the first 5 months (T0), at 1 year (T1), 2 years (T2) and 3 years (T3) after diagnosis. The proportion of patients with clinically relevant generic HRQoL impairment was compared with healthy norm values. Multivariable mixed model analyses were used to evaluate the development of HRQoL over time and its medical and sociodemographic determinants (collected on enrolment). RESULTS: Of the ALL-10 cohort, 132 families participated and of the ALL-11 cohort, 136 families participated (268 total). Thus, cancer-specific HRQoL assessments were available for 268 patients (median age 5.3 years (IQR 6.15), 56.0% boys, 69.0% medium-risk ALL), and generic HRQoL assessments for 136 patients (median age 4.8 years (IQR 6.13), 60.3% boys, 75.0% medium-risk ALL). Generic HRQoL improved between timepoints T0 and T3 (total score B 16.1, 95% CI 12.2 to 20.1, p&lt;0.001), but did not restore to normal 1 year after the end of treatment: 28.0% of children remained impaired compared with 16% in the general population (p=0.003). Cancer-specific HRQoL generally improved from T0 to T2 (Pain B 11.3, 95% CI 7.1 to 15.5; Nausea B 11.7, 8.4 to 15.1; Procedural Anxiety B 19.1, 14.8 to 23.4; Treatment Anxiety B 12.8, 9.5 to 16.0; Worry B 3.5, 0.6 to 6.3; Communication B 8.5, 5.0 to 11.9; all p&lt;0.001 except for Worry (p=0.02)), while Physical Appearance and Cognitive Functioning remained stable. Higher treatment intensity and experiencing pain or simultaneous chronic illness were associated with lower HRQoL over time for multiple subscales. CONCLUSIONS: HRQoL impairment is prevalent during and after ALL treatment. Patients with standard-risk ALL and reduced treatment intensity have better HRQoL than patients in higher risk groups. Systematic monitoring of HRQoL is of utmost importance in order to provide timely psychosocial interventions and supportive care.</p

Health-related quality of life and its determinants during and after treatment for paediatric acute lymphoblastic leukaemia:a national, prospective, longitudinal study in the Netherlands

Objectives Health-related quality of life (HRQoL) is impaired in paediatric patients with acute lymphoblastic leukaemia (ALL). Over the past decades, ALL treatment has successfully been adjusted to the risk of relapse, which is now reflected by the stratification of patients into three risk groups who receive treatment of differing intensities. This study is the first to evaluate the longitudinal course of HRQoL in light of these adjustments and identify determinants of HRQoL. Design Two prospective, national cohort studies (add-on studies within the two most recent treatment protocols for children with ALL (ALL-10 and ALL-11)). Setting Dutch paediatric oncology hospitals between October 2006 and October 2009 (ALL-10) and between August 2013 and July 2017 (ALL-11). Participants Patients with ALL (2–18 years) are treated according to the ALL-10 or ALL-11 treatment protocol. Patients treated according to the ALL-10 protocol only completed a cancer-specific QoL measure and patients treated according to the ALL-11 protocol completed both a cancer-specific and generic QoL measure (see below). Outcome measures HRQoL, assessed with parent-proxy questionnaires (PedsQL Generic and Cancer module) within the first 5 months (T0), at 1 year (T1), 2 years (T2) and 3 years (T3) after diagnosis. The proportion of patients with clinically relevant generic HRQoL impairment was compared with healthy norm values. Multivariable mixed model analyses were used to evaluate the development of HRQoL over time and its medical and sociodemographic determinants (collected on enrolment). Results Of the ALL-10 cohort, 132 families participated and of the ALL-11 cohort, 136 families participated (268 total). Thus, cancer-specific HRQoL assessments were available for 268 patients (median age 5.3 years (IQR 6.15), 56.0% boys, 69.0% medium-risk ALL), and generic HRQoL assessments for 136 patients (median age 4.8 years (IQR 6.13), 60.3% boys, 75.0% medium-risk ALL). Generic HRQoL improved between timepoints T0 and T3 (total score B 16.1, 95% CI 12.2 to 20.1, p&lt;0.001),Conclusions HRQoL impairment is prevalent during and after ALL treatment. Patients with standard-risk ALL and reduced treatment intensity have better HRQoL than patients in higher risk groups. Systematic monitoring of HRQoL is of utmost importance in order to provide timely psychosocial interventions and supportive care.</p

Gender-specific differences in parental health-related quality of life in childhood cancer

Background: Parents of children with cancer are at risk for impaired health-related quality of life (HRQoL). Most prior research has focused on the HRQoL of mothers. The aim of this study is to describe HRQoL in mothers and fathers, and determine the influence of sociodemographic, medical, and psychosocial factors. Procedure: In a cross-sectional study, both parents completed questionnaires on sociodemographics, distress, and HRQoL. Parental HRQoL was compared to healthy population values. Differences between mothers and fathers were evaluated with multilevel analysis. Gender-specific HRQoL determinants were assessed via multiple linear regression analysis. Results: Parents (202 mothers, 150 fathers; comprising 121 couples) of 231 children with different cancer diagnoses (mean time since diagnosis 3.3 ± 1.4 years, 90% posttreatment) participated. Compared to healthy women and men, mothers and fathers reported significantly impaired HRQoL on the following domains: cognitive functioning, sleep, daily activities, and vitality (Cohen's d = 0.3-0.9). Additionally, maternal HRQoL was reduced on the domains gross motor functioning, pain, social functioning, sexuality, and depressive emotions. Mothers scored worse than fathers on six of 12 domains. Risk factors for adverse outcomes in both parents were higher distress, emotional and parenting problems, little social support, medication use, and active treatment of the child. Other determinants in mothers were non-Dutch background and unemployment, while lower HRQoL in fathers was predicted by their child's diagnosis type, shorter time since diagnosis, and treatment intensity. Conclusion: These outcomes illustrate the need for family-centered care. Future interventions aimed at improving parental functioning should take into account gender-specific differences in HRQoL to reach optimal efficacy

Concurrencia de problemas de sueño y sufrimiento: prevalencia y determinantes en padres de niños con cáncer

Background: Parents of children with cancer are at risk for sleep problems. If these problems persist, an important perpetuating factor might be ongoing parental distress. Objective: The aim of this study is to assess the prevalence of sleep problems and the concurrence with distress in parents of children treated for cancer, and to identify predictors of this symptom clustering. Method: Parents completed the Medical Outcomes Study (MOS) Sleep Scale and Distress Thermometer for Parents (DT-P). Clinically relevant sleep problems were defined as a score >1SD above the norm and clinical distress as a thermometer score above the established cut-off of 4. Four parent categories were constructed: neither sleep problems nor distress; no distress but sleep problems; no sleep problems but distress; both sleep problems and distress. Predictive determinants (sociodemographic, medical, psychosocial) for each category were assessed with multilevel multinomial logistic regression. Results: Parents (202 mothers and 150 fathers) of 231 children with different cancers participated. Mean time since diagnosis was 3.3 ± 1.4 years (90% off-treatment). The prevalence of sleep problems was 37%. Fifty percent of parents reported neither sleep problems nor distress, 9% had only sleep problems, 13% only distress, and 28% reported both. Compared to parents without sleep problems or distress, parents who reported both were more likely to report parenting problems (OR 4.4, [2.2–9.1]), chronic illness (OR 2.8, [1.2–6.5]), insufficient social support (OR 3.7, [1.5–9.1]), pre-existent sleep problems (OR 6.2, [2.0–18.6]) and be female (OR 1.8, [1.1–4.2]). Conclusions: Sleep problems are common in parents of children treated for cancer, and occur mostly in the presence of clinical distress. Future research must show which interventions are most effective in this group: mainly targeted at sleep improvement or with prominent roles for stress management or trauma processing

Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer

Purpose: Proxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers’ reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress). Methods: Both parents completed the PedsQL generic (child’s HRQoL), Short Form-12 (own QoL) and Distress Thermometer for Parents. To assess agreement in child HRQoL, intra-class correlation coefficients (ICCs) were calculated. Differences between fathers/mothers were assessed with paired t tests. Systematic disagreement patterns were visualized with Bland–Altman plots. Characteristics of parental couples with a mean proxy difference in the highest quartile (highest proxy score minus lowest proxy score) were explored with multiple logistic regression analysis. Results: Parents of 120 children with cancer (87% post-treatment, mean age 11.0 ± 5.7 years) participated. No significant differences were found between paternal and maternal proxy scores, and agreement was good on all scales (ICCs 0.65–0.83). Bland–Altman plots revealed no systematic disagreement patterns, but there was a wide range in magnitude of the differences, and differences went in both directions. Couples with a mean proxy difference (irrespective of which direction) in the highest quartile (± 20 points) were more likely to have a child in active treatment, with retinoblastoma or relapsed disease, and to diverge in their own QoL. Conclusions: If proxy reports of only one parent are available, clinicians may reasonably assume that paternal and maternal reports are interchangeable. However, if in doubt, respondent’s sex is not of major importance, but clinicians should be aware of patient’s and family’s characteristics

Sleep in hospitalized pediatric and adult patients – A systematic review and meta-analysis

Background: Sleep is essential for recovery from illness. As a result, researchers have shown a growing interest in the sleep of hospitalized patients. Although many studies have been conducted over the past years, an up to date systematic review of the results is missing. Objective: The objective of this systematic review was to assess sleep quality and quantity of hospitalized patients and sleep disturbing factors. Methods: A systematic literature search was conducted within four scientific databases. The search focused on synonyms of 'sleep’ and 'hospitalization’. Papers written in English or Dutch from inception to April 25th,2022 were included for hospitalized patients >1 year of age. Papers exclusively reporting about patients receiving palliative, obstetric or psychiatric care were excluded, as well as patients in rehabilitation and intensive care settings, and long-term hospitalized geriatric patients. This review was performed in accordance with the PRISMA guidelines. Results: Out of 542 full text studies assessed for eligibility, 203 were included, describing sleep quality and/or quantity of 17,964 patients. The median sample size of the studies was 51 patients (IQR 67, range 6–1472). An exploratory meta-analysis of the Total Sleep Time showed an average of 7.2 h (95%-CI 4.3, 10.2) in hospitalized children, 5.7 h (95%-CI 4.8, 6.7) in adults and 5.8 h (95%-CI 5.3, 6.4) in older patients (>60y). In addition, a meta-analysis of the Wake After Sleep Onset (WASO) showed a combined high average of 1.8 h (95%-CI 0.7, 2.9). Overall sleep quality was poor, also due to nocturnal awakenings. The most frequently cited external factors for poor sleep were noise and number of patients in the room. Among the variety of internal/disease-related factors, pain and anxiety were most frequently mentioned to be associated with poor sleep. Conclusion: Of all studies, 76% reported poor sleep quality and insufficient sleep duration in hospitalized patients. Children sleep on average 0.7–3.8 h less in the hospital than recommended. Hospitalized adults sleep 1.3–3.2 h less than recommended for healthy people. This underscores the need for interventions to improve sleep during hospitalization to support recovery

Closing the loop Approaches to monitoring the state of the Arctic Mediterranean during the International Polar Year 20072008

During the 4th International Polar Year 2007–2009 (IPY), it has become increasingly obvious that we need to prepare for a new era in the Arctic. IPY occurred during the time of the largest retreat of Arctic sea ice since satellite observations started in 1979. This minimum in September sea ice coverage was accompanied by other signs of a changing Arctic, including the unexpectedly rapid transpolar drift of the Tara schooner, a general thinning of Arctic sea ice and a double-dip minimum of the Arctic Oscillation at the end of 2009. Thanks to the lucky timing of the IPY, those recent phenomena are well documented as they have been scrutinized by the international research community, taking advantage of the dedicated observing systems that were deployed during IPY. However, understanding changes in the Arctic System likely requires monitoring over decades, not years. Many IPY projects have contributed to the pilot phase of a future, sustained, observing system for the Arctic. We now know that many of the technical challenges can be overcome. The Norwegian projects iAOOS-Norway, POLEWARD and MEOP were significant ocean monitoring/research contributions during the IPY. A large variety of techniques were used in these programs, ranging from oceanographic cruises to animal-borne platforms, autonomous gliders, helicopter surveys, surface drifters and current meter arrays. Our research approach was interdisciplinary from the outset, merging ocean dynamics, hydrography, biology, sea ice studies, as well as forecasting. The datasets are tremendously rich, and they will surely yield numerous findings in the years to come. Here, we present a status report at the end of the official period for IPY. Highlights of the research include: a quantification of the Meridional Overturning Circulation in the Nordic Seas (“the loop”) in thermal space, based on a set of up to 15-year-long series of current measurements; a detailed map of the surface circulation as well as characterization of eddy dispersion based on drifter data; transport monitoring of Atlantic Water using gliders; a view of the water mass exchanges in the Norwegian Atlantic Current from both Eulerian and Lagrangian data; an integrated physical–biological view of the ice-influenced ecosystem in the East Greenland Current, showing for instance nutrient-limited primary production as a consequence of decreasing ice cover for larger regions of the Arctic Ocean. Our sea ice studies show that the albedo of snow on ice is lower when snow cover is thinner and suggest that reductions in sea ice thickness, without changes in sea ice extent, will have a significant impact on the arctic atmosphere. We present up-to-date freshwater transport numbers for the East Greenland Current in the Fram Strait, as well as the first map of the annual cycle of freshwater layer thickness in the East Greenland Current along the east coast of Greenland, from data obtained by CTDs mounted on seals that traveled back and forth across the Nordic Seas. We have taken advantage of the real-time transmission of some of these platforms and demonstrate the use of ice-tethered profilers in validating satellite products of sea ice motion, as well as the use of Seagliders in validating ocean forecasts, and we present a sea ice drift product – significantly improved both in space and time – for use in operational ice-forecasting applications. We consider real-time acquisition of data from the ocean interior to be a vital component of a sustained Arctic Ocean Observing System, and we conclude by presenting an outline for an observing system for the European sector of the Arctic Ocean

The prevalence and risk factors of sleep problems in pediatric oncology: its effect on quality of life during and after cancer treatment

<p>This review aims to describe the prevalence, types and risk factors of sleep problems in children undergoing cancer treatment and in childhood cancer survivors. Furthermore, the relation between sleep and quality of life (QoL) was described. In children undergoing treatment sleep problems were more common compared to norms and controls. In survivors results were more inconsistent and in some studies even less sleep problems were reported. In both populations various sleep problems were reported (such as night awakenings, bedtime resistance, and daytime sleepiness). Several demographic, disease and treatment related factors were associated with sleep outcomes. Impaired sleep was associated with poorer physical, psychosocial, and cancer-related QoL. Sleep was assessed with a variety of measurements, all measuring different sleep constructs, limiting the formulation of generalizable conclusions. Therefore, a standardized way to assess sleep in different age categories in pediatric oncology is mandatory.</p