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Aobjective: The impact of fine motor impairment among adult survivors of childhood acute lymphoblastic leukemia (ALL) on life after treatment is unknown., Methods: This study evaluated prevalence and utilized multivariate logistic regression to identify risk factors for fine motor impairment among survivors of ALL, and associations with educational attainment and social independence. Latent class analysis defined social independence (independent, moderately independent, dependent), using employment, independent living, personal care assistance, routine need assistance, driver's license status, and marital status inputs., Results: Among 875 survivors who were ≥ 25 years old (age when most adults achieve independence) and ≥ 5 years from diagnosis (mean = 28.97 years), 33.6% had fine motor impairment, with scores at or below the 10th percentile of the scores of community controls (n = 460) on fine motor components of the physical performance test and the grooved peg-board test. Survivors exposed to cranial radiation had more fine motor impairment than those without (45.8% vs 20.2%). Male sex (exposed: odds ratio [OR] = 2.55, 95% confidence interval [CI] = 1.65-3.92; unexposed: OR = 3.02, 95% CI = 1.69-5.38) and lower scores on the Wechsler abbreviated scale of intelligence (exposed: OR = 0.46, 95% CI = 0.36-0.58; unexposed: OR = 0.43, 95% CI = 0.31-0.58) were risk factors for neuropathy. A 1-point-higher total neuropathy score was associated with 8% (95% CI = 1%-17%) increased odds of fine motor impairment. Fine motor impairment was associated with less than a college education (less than high school: OR = 2.23, 95% CI = 1.20-4.14; high school diploma/general equivalency diploma: OR = 2.66, 95% CI = 1.65-4.30; vocational education: OR = 2.07, 95% CI = 1.38-3.13) and less social independence (moderately independent: OR = 1.80, 95% CI = 1.15-2.83; dependent: OR = 2.65, 95% CI = 1.25-5.64)., Conclusion: Fine motor impairment in survivors of childhood ALL may interfere with optimal educational attainment and social independence., Impact: Early identification of survivors at risk for fine motor impairment, with timely intervention, may improve long-term outcomes., (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Physical Therapy Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Objectives: Survivors of childhood B-acute lymphoblastic leukemia (B-ALL) are at risk for difficulties with attention and executive functioning (EF) as a late effect of treatment. The present study aimed to identify treatment and demographic factors associated with risk for difficulties with EF in youth treated for high-risk B-ALL., Method: Children and adolescents with B-ALL treated on Children's Oncology Group (COG) protocol AALL0232 were randomized to high-dose or escalating-dose methotrexate (MTX), and either dexamethasone or prednisone during the induction phase. Neuropsychological functioning was evaluated via protocol AALL06N1, including performance-based and parent-report measures, for 177 participants (57% female, 81% white; mean age at diagnosis = 8.4 years; SD = 5.0) 8-24 months following treatment completion., Results: Mean scores for all attention and EF measures were within the average range, with no significant differences as a function of MTX delivery or steroid treatment (all p > 0.05). In multivariable models, participants with US public insurance exhibited significantly greater parent-reported EF difficulties than those with US private or non-US insurance (p ≤ 0.05). Additionally, participants diagnosed under 10 years of age performed significantly more poorly on measures of attention (i.e., continuous performance task, p ≤ 0.05) and EF (i.e., verbal fluency and tower planning task, p ≤ 0.05)., Conclusions: For survivors of pediatric B-ALL, treatment-related factors were not associated with attention or EF outcomes. In contrast, outcomes varied by demographic characteristics, including age and insurance type, an indicator of economic hardship. Future research is needed to more directly assess the contribution of socioeconomic status on cognitive outcomes in survivors., (© 2024 The Author(s). Pediatric Blood & Cancer published by Wiley Periodicals LLC. This article has been contributed to by U.S. Government employees and their work is in the public domain in the USA.)

Background: Engaging in physical activity (PA) throughout cancer treatment offers many benefits, but may be challenging due to cancer-related pain. Pain research in pediatric cancer has primarily focused on procedural pain, with fewer studies exploring how pain affects PA. The current study qualitatively investigated the impact of pain on PA in youth with acute lymphoblastic leukemia (ALL) using a biopsychosocial framework., Procedure: As part of a larger study, caregivers (N = 17) of a child diagnosed with ALL and on treatment for less than 1 year completed a semi-structured interview about perceptions of their child's health behaviors during ALL treatment. This secondary analysis focused specifically on discussions about pain and its impact on PA. We followed Braun and Clarke's (2006) six-step thematic analysis framework to identify themes of pain-related barriers to PA., Results: Key pain-related barriers endorsed by caregivers included: interactions among pain and treatment effects, caregiver distress around seeing their child in pain, and fear of interfering with medical equipment. Despite these barriers, caregivers found creative solutions to adapt activities for their child. Caregivers were reassured by PA advice from their medical team; however, advice varied between teams., Conclusion: The relationship between pain and PA during ALL treatment is influenced by an intricate system of biological (e.g., treatment effects), psychological (e.g., parental distress), and social (e.g., communication among families and medical teams) factors. Future directions include identifying evidence-based PA recommendations and exploring family-team communication dynamics. This study also highlights a need to prioritize ALL pain management and involve caregivers in behavioral treatment protocols to improve PA., (© 2024 Wiley Periodicals LLC.)

Background: Improved survival rates broadened the pediatric oncology focus to include health-related quality of life (HRQoL). This cross-sectional study aimed to examine HRQoL by treatment phase and disease risk level in pediatric patients with B-cell acute lymphoblastic leukemia (B-ALL), including those in early survivorship., Procedure: A subset of data from a larger prospective cohort study was analyzed. Data were collected from 73 patients (73 parent reports and 28 self-reports). Parent proxy and self-report PROMIS measures assessed HRQoL across treatment phases (early intensive, maintenance, and off treatment) and disease risk groups (standard vs high). Analyses assessed the relationship between parent proxy and patient self-reports and the differences in HRQoL among treatment phases and risk groups., Results: Parent proxy reports generally indicated worse fatigue, pain interference, and mobility compared with patient self-reports. Self-reports in the early intensive treatment group suggested worse depressive symptoms, fatigue, mobility, and upper extremity function compared with those in later phases. Parent proxy reports showed worse fatigue and depressive symptoms in early intensive treatment group relative to those in later phases. Patient self-reports in the maintenance group demonstrated the best peer relationships scores. Parent proxy reports in the high-risk group reported significantly higher depressive symptoms and fatigue compared with the standard-risk group., Conclusions: Differences in HRQoL suggest targets for further assessment and intervention. The early treatment and immediate post-survivorship periods may represent particularly critical time points. Longitudinal studies with larger and diverse samples should further explore HRQoL trajectories in this population., (© 2024 Wiley Periodicals LLC.)

Background: The improved outcome of childhood acute lymphoblastic leukemia (ALL) over the last decades has increased the importance of assessing late effects and health-related quality of life (HRQoL), particularly when evaluating and comparing outcomes in clinical trials. This study aimed to assess HRQoL in children treated for ALL according to the NOPHO ALL2008 protocol., Procedure: Children, aged 1 to less than 18 years at diagnosis, alive in first remission, and their parents, were asked to complete PedsQL 4.0 Generic Core Scales (self- and proxy-report) at ≥6 months after end of therapy. Data on socioeconomic factors and parent-reported toxicity were collected through a study-specific questionnaire, and the NOPHO ALL2008 database was used to identify eligible families and add additional disease- and treatment-related data. HRQoL data were collected during 2013-2019 in Sweden, Finland, and Denmark., Results: A total of 299 children were included. The older children (8 years and older) reported similar HRQoL scores compared to Finnish reference data, except lower scores for School Functioning in high-risk patients. Scores from the parent-proxy and self-reports from 5-7-year olds were notably lower than reference. Parent-reported toxicity was associated with lower total and physical HRQoL scores in adjusted models for younger as well as older children in the self-report and parent-proxy versions, and also with lower psychosocial score in the parent-proxy., Conclusions: Self-reported HRQoL was similar to reference population. The most important determinant for HRQoL after end of ALL treatment was parent-reported toxicity during treatment. Thus, minimizing complications is an obvious focus for future treatment protocols., (© 2024 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.)

Objectives: The aim of this completed pilot study was to evaluate the feasibility of implementing a family management program (FMP) for parents of children with acute lymphoblastic leukemia (ALL)., Data Sources: A convenience sample of 11 parents of preschool-aged children with ALL were recruited from an ambulatory chemotherapy-care clinic at a tertiary hospital in Thailand. Participants received three FMP sessions over 3 weeks. The FMP is based on two established family programs (ie, FMP-style framework and building on family strengths) and reviewed literature. The following measures were used to evaluate parents' responses at baseline, postintervention, and follow-up: Family Management Measure, Beach-Center Family Quality-of-Life Scale, and Pediatric Quality of Life Inventory. Data were analyzed using one-way repeated-measures analysis of variance., Conclusion: The study results provide promising evidence that the FMP is feasible and improves family management and quality of life for parents of enrolled children with ALL., Implications for Nursing Practice: Educating pediatric oncology nurses and other healthcare professionals to replicate the FMP may help to provide better family management, and child quality of life support to future parents and other family members of young children diagnosed with ALL. This support should focus on educating parents about the potential effects of caring for a child with ALL on the family and fostering positive relationships within the family and offering guidance on effective family communications and decision-making processes., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Nujjaree Chaimongkol reports a relationship with Burapha University Faculty of Nursing that includes: employment. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Purpose: Adults who had acute lymphoblastic leukaemia (ALL) as children and were treated with allogeneic hematopoietic stem cell transplantation (aHSCT) may have been affected in their lives due to several long-term complications. From a clinical point of view, it is of interest to study how survivors describe their perceptions of their childhood today. The aim was therefore to describe how adults perceived their childhood and the influences of being treated for ALL with aHSCT as a child., Method: Semi-structured telephone interviews were undertaken with 18 adults who had been treated for childhood ALL with aHSCT and were included in a national cohort of childhood ALL survivors, diagnosed between 1985 and 2007 at an age between 0 and 17 years. A phenomenographic analysis was used., Results: Three categories emerged: Feeling different, Feeling security and Feeling guilty. The informants felt that they had been different from other children but had felt security with the healthcare professionals and in care. They felt guilty because both their siblings' and parents' lives had been affected, but at the same time many perceived that they and their family members had become closer to one another., Conclusions: The results emphasised that adults who had been treated for childhood ALL with aHSCT were affected both in negative and positive ways during their childhood. This indicates the importance for early psychosocial care interventions directed to children during their treatment, but also the need for person-centred psychological care in long-term outpatient clinics., Competing Interests: Declaration of competing interest The authors declare no competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: Chemotherapy and radiotherapy, used to treat childhood hematological malignancies (acute lymphocytic leukemia [ALL] and acute myelocytic leukemia [AML]) can negatively affect oral tissues and organs. This study aimed to evaluate the oral health-related quality of life in children with ALL/AML., Materials and Methods: A total of 99 children, including 49 undergoing ALL/AML (41 with ALL and eight with AML) and 50 healthy volunteers, were included in this cross-sectional study. The mean age of the entire study group was 78.63 ± 34.41 months. The mean age of the ALL/AML and control groups was 87.12 ± 35.04 and 70.95 ± 34.85 months, respectively. The Simplified Oral Hygiene Index (SOHI), the Decayed, Missing, and Filled Teeth (DMFT/dmft) index, and the Turkish version of the Early Childhood Oral Health Impact Scale (ECOHIS-T) were administered to all children. The data were analyzed using SPSS software (version 22.0). The Pearson chi-square and Fisher's exact tests were used to compare demographic data., Results: The age and gender distributions of the two groups were similar. According to ECOHIS-T, the children in the ALL/AML group had significantly more loss of function (eating, drinking, sleeping, etc.) than those in the control group., Conclusions: Oral health and self-care were negatively affected by childhood ALL/AML and its treatment., (© 2023 The Authors. Oral Diseases published by Wiley Periodicals LLC.)

Background: This study examined fatigue in patients treated for childhood acute lymphoblastic leukemia (ALL) over a 2-year period (3- to 27-months post-treatment completion), from the perspective of children and parent caregivers, compared to a healthy comparison group., Methods: Eighty-three patients (4-16 years at enrolment) and their parents, reported on the child's fatigue using the Pediatric Quality of Life Inventory- Multidimensional Fatigue Scale (PedsQL-MFS), at 3- 15- and 27-months post-treatment completion, and 53 healthy children and their parents reported on fatigue across the same timepoints., Results: Parent proxy-reporting showed that parents of ALL patients reported more total fatigue than parents of the comparison group at all time points, with all subscales elevated (general, cognitive, and sleep/rest fatigue). In contrast, patient self-report of fatigue over this period differed from the comparison children for the general fatigue subscale only. Self-reported total fatigue was worse than the comparison group at the 27-month timepoint, with cognitive and sleep/rest fatigue symptoms contributing to this difference. Expected improvements in fatigue over time were not evident in either patient or parent report and no demographic risk factors were identified. Parents and children from both groups reported significantly more fatigue at all time points compared to commonly utilised normative population data., Conclusions: Patients treated for childhood ALL are impacted by fatigue symptoms in the post-treatment and early survivorship period. These findings highlight that patients in the 2-years following treatment require increased symptom surveillance and may benefit particularly from interventions that target cognitive and sleep/rest fatigue., (© 2024. Crown.)

The present study is a systematic review of factors and consequences of parental distress following their children's acute lymphoblastic leukemia (ALL) diagnosis. PubMed, Web of Science, and APA PsycInfo databases were searched. Twenty-eight papers were included, with only three longitudinal studies. Fifteen studies explored factors of parental distress, including sociodemographic, psychosocial, psychological, family, health, and ALL-specific variables. Correlations were found between social support, illness cognitions, coping strategies, and parental distress, as well as contradictory results regarding sociodemographic variables. Family cohesion and the overall impact of illness were associated with parental distress. Resilience factors contributed negatively to parental distress symptoms, and perceived caregiver strain and negative child's emotional functioning contributed positively. Thirteen papers explored the consequences of parental distress, including psychological, family, health, and social/education factors. Distress was correlated with care burden and contributed to family strain, child's symptom burden, and parental protective behavior. Significant correlations were found between parental distress, at diagnosis, and further adjustment of parents and children. Most papers reported correlations between parental distress and psychological condition and quality of life; few studies reported no association. Correlations between maternal depression and child's participation in education and social life were found. Differences on distress were found regarding parents' gender, age, children's group risk, and treatment phases. Longitudinal studies are needed to better understand the phenomenon and its consequences. Future interventions should address parents' mental health needs in an early and ongoing assessment in order to promote healthier outcomes. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Background: Children treated for acute lymphoblastic leukemia (ALL) receive prolonged treatment, resulting in toxicities that affect health-related quality of life (HR-QoL). Longitudinal assessment of HR-QoL allows improved understanding of experiences with ALL., Procedure: Parent-proxy and child self-report HR-QoL over the first year of chemotherapy were evaluated in the context of DFCI Protocol 05-001, a phase 3 therapeutic trial for childhood ALL. HR-QoL was assessed with the Pediatric Quality-of-Life inventory (PedsQL) domains for Pain and Hurt, Procedural Anxiety, Treatment Anxiety, Emotional Functioning, General Fatigue, and Sleep/Rest Fatigue., Results: Total of 281 subjects participated, with 141 contributing at least one child report and 280 at least one parent report. Children with ALL experienced impairment in HR-QoL by both patient and parent report compared to the published PedsQL reference population at each time point on each subscale. Agreement between parent and child assessment of HR-QoL impairment was high, particularly among those for whom HR-QoL was not impaired. During the consolidation phase, which included intensive asparaginase administration, multivariable models demonstrated more impairment in Treatment Anxiety and Procedural Anxiety for children treated with intramuscular asparaginase than intravenous asparaginase, but randomized groups were otherwise similar in HR-QoL. Impairments in fatigue, both General and Sleep/Rest, were evident throughout and worse during intensive asparaginase therapy., Conclusions: This report examines HR-QoL for children with ALL during treatment longitudinally by parent and patient report across multiple domains. Children with ALL demonstrated substantial impairment in HR-QoL, particularly related to fatigue during intensive consolidation therapy including asparaginase., (© 2023 Wiley Periodicals LLC.)

Objective: Improved treatment landscape has led to better outcomes for paediatric acute lymphoblastic leukemia (ALL) survivors. As the number of survivors increase, we need to elucidate the long-term quality of life (QoL) and domains of complaints in these patients. Furthermore, the main priorities of these patients need to be clarified. We assessed long-term QoL outcomes of survivors of childhood ALL compared to matched population controls., Methods: QoL data were collected from survivors recruited in France and Belgium between 2012 and 2017, including the Short Form Health Survey (SF-12) and the Quality of Life Systemic Inventory (QLSI). The Wilcoxon test was used to compare SF-12 scale scores between survivors and matched population controls. For the QLSI, comparisons were mainly descriptive., Results: One hundred and eighty-six survivors (mean age: 27.6 years; range: 18.1-52.8) at follow-up completed QoL measures, amongst whom 180 were matched to controls. Overall, survivors had higher QoL on all SF12 scale scores, indicating that they had better functioning compared to controls. Statistically significant differences on the SF12 were observed for Vitality, Social Functioning, Role Limitations due to Emotional Problems and Mental Health scales. QLSI outcomes suggested that survivors were happier than controls with Couple and Social Relations. Controls were unhappiest compared to survivors with Money, Love life, Self-esteem, Nutrition and Paid Work., Conclusions: Our findings suggest that survivors of childhood ALL have better QoL outcomes on some domains compared to the general population, specifically around social and emotional functioning, and that they tend to prioritize their relationships more. Interventions for improving QoL outcomes, might build on existing positive experiences with family, friends and partners., (© 2022 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Background: Recent shifts from radiation to chemotherapy-based treatment for acute lymphoblastic leukemia (ALL) have contributed to reduced long-term morbidity. Despite this, ALL survivors remain at increased risk for long-term cognitive impairments., Aim: To identify demographic and treatment factors associated with school performance in pediatric survivors of ALL., Methods: We collected standardized test scores for reading, math, and science obtained in a school setting from grades 3-11 in 63 ALL survivors (46.0% boys). Most participants were assessed across multiple grades (median number of grades n = 5, range 1-7), and 269 observations were considered in the analyses. Treatment exposures were extracted from medical records. Socio-economic status was estimated using participation in free/reduced lunch programs at school. Mixed effects linear regression models were conducted to determine factors associated with school performance., Results: ALL survivors' scores were comparable to state norms on reading, math, and science performances. On multivariable analysis, participation in free/reduced lunch programs was significantly associated with lower reading scores (β = -12.52; 95% CI -22.26:-2.77, p = .01). Exposure to radiation during treatment was also associated with lower reading test scores (β = -30.81, 95% CI -52.00:-9.62, p = .01). No significant associations between demographics and treatment parameters were observed for math and science test scores., Conclusions: We utilized population-based achievement tests conducted from grades 3-11 to characterize school performance in ALL survivors. Our results imply that survivors with low socio-economic status and those exposed to radiation during treatment could benefit from early monitoring and intervention to maximize academic success., (© 2021 The Authors. Cancer Reports published by Wiley Periodicals LLC.)

This study describes the behavioral and emotional adjustment of 77 children and adolescents 3 months post-treatment for acute lymphoblastic leukemia (ALL), compared to 52 age and sex-matched healthy peers. Parents, teachers, and self-report ratings on the Behavioral Assessment System for Children, Second Edition (BASC-2) were utilized to measure psychological function. While overall mean scores were in the average range for both groups, parents and teachers rated patients higher on behavior symptoms, internalizing problems and adaptive skill difficulties. No significant differences between groups were observed on self-report, and inter-rater correlations were low to moderate. For the ALL group, maternal university completion was associated with elevations on parent report of behavioral problems, while no other factors predicted either parent or teacher report on other scales. Findings indicate that a subset of patients will require specialist psychosocial support to optimise their adjustment following treatment completion., (© 2022. Crown.)

Abstract: Children with acute lymphoblastic leukemia (ALL) often experience treatment-related neurocognitive deficits and significant pain. Pain may exacerbate these cognitive impairments. This study examined neuropathic pain and neurocognitive outcomes in survivors of childhood ALL treated with contemporary therapy on a clinical trial (NCT00137111). There were 345 survivors (45% female, M = 6.9 years at diagnosis) who completed neurocognitive assessments including measures of sustained attention, learning and memory, and parent ratings of attention during at least one of 4 time points: on-therapy (Induction and Reinduction), end of therapy, and 2 years post-therapy. At-risk performance was defined as a score at least 1SD below the age-adjusted mean. Data on neuropathic pain (events, duration, and severity according NCI Common Toxicity Criteria) and pharmacologic pain management (opioids and gabapentin) were ascertained. Results showed that 135 survivors (39%) experienced neuropathic pain during treatment. Compared with those without pain, survivors with pain had greater memory impairments at end of therapy (California Verbal Learning Test [CVLT]-Total, 24% vs 12%, P = 0.046). Within the pain group, survivors who experienced a greater number of pain events (CVLT-Total = -0.88, P = 0.023) and those who were treated with opioids (versus gabapentin) had poorer learning and memory performance (CVLT-Total = -0.73, P = 0.011; Short Delay = -0.57, P = 0.024; Long Delay = -0.62, P = 0.012; and Learning Slope = -0.45, P = 0.042) across time points. These are considered medium-to-large effects (SD = 0.45-0.88). Neuropathic pain may be a risk factor for learning problems after therapy completion, and treatment for pain with opioids may also adversely affect neurocognitive performance. Therefore, patients who experience pain may require closer monitoring and additional intervention for neurocognitive impairment., (Copyright © 2021 International Association for the Study of Pain.)

Objective: To develop and test a brief Composite Intervention Module for Pre-adolescents with Acute Lymphoblastic Leukemia (CIMPALL)., Design: Single-center randomized controlled design., Setting: A tertiary care center of national importance PARTICIPANTS: A total of 36 children with acute lymphoblastic leukemia in the maintenance phase of the treatment., Intervention: A five-session (540 min) brief, multidomain, audiovisually aided, therapist-facilitated conjoint intervention module for children with cancer and their parents., Main Outcome Measures: Standardized psychological tools for children including CBCL, CPSS (Child Posttraumatic Stress Disorder Symptoms Scale), PedsQol (Pediatric Quality of Life), and NIMHANS (National Institute of Mental Health and Neurosciences) neuropsychological battery and parents including PTSD CC (Posttraumatic Stress Disorder Civilian Checklist), CHIP (Coping Health Inventory for Parents), CBS (Caregiver Burden Scale), and SRQ (Self-Reporting Questionnaire)., Results: A total of 36 patients were randomized to an experimental or a control group. Over 80% agreement was observed on indices of expert evaluation; 100% of participants found the sessions to be helpful, useful, appropriate in terms of time, duration, and place, and interventionist. The participation rate in the sessions was 94% and the study flow was smooth; 97.3% eligible candidates agreed to participate. Furthermore, 100% agreement on performance of activities was observed and the attrition rate was 5.26%., Conclusion: This pilot study presents the CIMPALL, which to the best of our knowledge is the first of its kind in India. The data suggest that the CIMPALL intervention is feasibly delivered by a clinical psychologist and that the CIMPALL intervention has an impact on important psychosocial variables for children with acute lymphoblastic leukemia and their parents., Competing Interests: Declaration of Competing Interest None., (Copyright © 2021 French Society of Pediatrics. Published by Elsevier Masson SAS. All rights reserved.)

Objective: To describe the experiences and perspectives of parents of pediatric patients with acute lymphoblastic leukemia (ALL) regarding oral chemotherapy administration during maintenance therapy., Methods: English-speaking parents of patients 4 to <18 years who were receiving ALL maintenance oral chemotherapy were eligible to participate in this mixed methods study. Using semi-structured interviews, we asked participants how difficult they found oral chemotherapy administration. We also probed regarding barriers and facilitators of oral chemotherapy administration and strategies used to overcome challenges. Lastly, we asked participants for their advice to future parents giving oral chemotherapy to their children., Results: Twenty-three participants were interviewed. One-fifth of participants stated that oral chemotherapy administration at home was hard or very hard. Common factors influencing oral chemotherapy administration were product-related (e.g., formulation) and treatment-related adverse effects (e.g., nausea), lifestyle adjustment (e.g., fitting in with family schedule), and attitudes (e.g., onus of medication administration). Strategies to address oral chemotherapy administration included several administration techniques, scheduling of medication administration, and normalization of medication taking., Conclusions: Oral chemotherapy administration during ALL maintenance therapy was hard for some parents. Identification of these parents and discussion of strategies to facilitate adherence to oral chemotherapy regimens may optimize patient outcomes., (© 2021 Wiley Periodicals LLC.)

Background/aim: There are no extensive studies on the QL in children who completed acute lymphoblastic leukemia (ALL) treatment and currently living without any disease in Turkey. Our study aimed to analyze both the QL and the effects of physical, neurocognitive capacities on QL in childhood ALL survivors aged 7–12 years at the time of recruitment., Materials and Methods: PedsQL cancer module 3.0 child and proxy report, for ages 5–7 and 8–12 years, WeeFIM scale, BOTMP Short Form, RPM, reading, writing, and mathematics assessment tools, sociodemographic information form were carried out to the children and their family., Results: There was no effect of the months since the completion of therapy on pain, anxiety, cognitive problems, perceived physical appearance, and the total QL scores of children and proxy reports (p > 0.05). Children’s physical capacities were significantly worse than healthy controls and have not reached the level of healthy children even after a long time since completion of ALL therapy. There was a significant association between physical capacity and daily independent living status (p < 0.001). Reading, writing, and mathematical skills were significantly associated with the mean time off-treatment (p < 0.001), and the total score of RPM and PedsQL of those with mathematical difficulties were significantly lower than those without any difficulty (p < 0.05)., Conclusion: The months after the treatment (off-treatment time) have not affected total and subunit QL scores. As motor skills difficulties will lead to low academic achievement, early recognition direct the parents for immediate intervention. lead to low academic achievement, early recognition could direct the parents for immediate intervention. Planning psychosocial support programs for physical activity and age-appropriate development of patients from the initiation of treatment will increase the QL in childhood ALL with a survival rate of 80% or more., Competing Interests: None declared, (This work is licensed under a Creative Commons Attribution 4.0 International License.)

Background: Survivors of childhood acute lymphoblastic leukemia and lymphoma (ALL/LL) are at risk for cognitive dysfunction, but little is known about its relationship with language proficiency and sociodemographics., Procedure: In this cross-sectional cohort study of Latino survivors of childhood ALL/LL, English and Spanish language proficiency and cognitive and academic functioning were measured and their associations determined using paired t-tests, Pearson correlations, and linear regressions., Results: Participants (N = 57; 50.9% female) had mean ages (years ± SD) of 4.3 ± 2.6 at diagnosis and 10.6 ± 2.9 at testing (range 6-16); mean time post treatment was 3.7 ± 2.6 years. The majority (73.7%) had low socioeconomic status (SES). Most (78.8%) were dual-language learners in English and Spanish. English proficiency was graded as limited-to-fluent and was significantly higher than Spanish (p < .001). Higher SES was correlated with higher English proficiency (r = 0.31, p = .020). Males had higher Spanish proficiency (r = -0.32, p = .034). Controlling for SES and sex, English proficiency accounted for 43% of cognitive functioning variance (F = 14.86, p < .001), 55% of reading comprehension variance (F = 22.14, p < .001), and 21% of mathematics variance (F = 5.76, p = .002)., Conclusions: Low language proficiency correlated with SES but was independently associated with lower cognitive and academic functioning. Research and surveillance for neurocognitive late effects in Latino ALL/LL survivors should incorporate measures of language proficiency and SES to account for their effects on cognitive and academic functioning., (© 2021 Wiley Periodicals LLC.)

Purpose: To characterize academic and adaptive skill outcomes in survivors of high-risk B-lineage acute lymphoblastic leukemia (HR B-ALL)., Methods: Participants were 178 patients enrolled on a nontherapeutic clinical trial that aimed to characterize neurocognitive and functional outcomes (ie, academic achievement and adaptive skills) following treatment for childhood HR B-ALL. Eligible patients were treated on Children's Oncology Group AALL0232 clinical trial that included two treatment randomizations: methotrexate delivery (high or escalating dose) and corticosteroid (dexamethasone or prednisone). Academic achievement and adaptive skills were evaluated at one time point, 8-24 months after completing treatment., Results: Multivariable logistic regression showed no significant association between treatment variables and outcomes after accounting for age at diagnosis, sex, and insurance status. In multivariable analyses accounting for sex and insurance status, survivors <10 years old at diagnosis had significantly lower scores in Math (P = .02). In multivariable analyses accounting for sex and age at diagnosis, scores for children with US public health insurance were significantly lower than those with US private or military insurance across all academic and adaptive skills (all P-values ≤.04). Results from univariate analyses showed that boys had significantly lower scores than girls across all adaptive skill domains (all P-values ≤.04)., Conclusion: Regardless of treatment randomization, survivors of HR B-ALL <10 years at diagnosis are at risk for deficits in Math and overall adaptive functioning; overall adaptive skills for boys were significantly poorer. Screening and early intervention for patients at highest risk, particularly young patients and lower resourced families, should be prioritized., (© 2021 Wiley Periodicals LLC.)

Background: The improvement in treatment of pediatric acute lymphatic leukemia (ALL) has introduced new challenges for pediatric oncology care in understanding and handling long-term treatment-related complications later in adult life. The aim of this study was to describe health related quality of life (HRQoL) and the relation to buffering factors among young adult (YA) pediatric ALL survivors and their siblings., Methods: This cross-sectional study was performed among 227 adults, treated for pediatric ALL in Sweden between 1985 and 1997 and their siblings (n = 70). Group means of HRQoL (SF-36) were compared between YA ALL survivors and the siblings, as well as to normative values from the general population. Self-efficacy (GSES) and social support (SS-13 subscale AVSI) was considering potential buffering factors for HRQoL and mental health. Associations between HRQoL and mental health respectively and self-efficacy and social support was analyzed., Results: The YA ALL survivors scored significantly lower on the HRQoL parameters general health (69.6 vs. 78.4, p = 0.004) and role emotional (77.1 vs. 88.1, p = 0.014), than the siblings. Further, they reported significantly lower general health (69.6 vs. 75.8), vitality (56.9 vs. 68.8), social functioning (84.5 vs. 88.6), role emotional (77.1 vs. 85.7) and mental health (71.3 vs. 80.9) compared with Swedish norms. Both YA ALL survivors and the siblings reported lower vitality and worse mental health than the general population. The HRQoL parameters, depression, stress and anxiety were all associated with both self-efficacy and social support among the YA ALL survivors. Among the siblings however, only general health, vitality, role emotional, mental health and depression were associated with social support, and only general health and mental health were associated with general self-efficacy., Conclusion: The results from this study show that buffering factors, like social support and self-efficacy, may play an important role for psychosocial outcomes and HRQoL among YA ALL survivors later in life. The results suggest that this group could benefit from continuous support in adult life to handle consequences of their pediatric disease.

Objective: To analyze the effect of psycho-educational intervention on knowledge of oral hygiene and psychological distress to the parents of children suffering from leukemia., Methods: Design of this study was a quasi-experimental pre-posttest control group design. The sample were 70 mothers who had children with leukemia (intervention group = 35 mothers; control group = 35 mothers). The independent variable was psycho-educational, while the dependent variables were oral hygiene knowledge and psychological distress. The instruments used were the knowledge questionnaire and the Depression-Anxiety-Stress Scale (DASS-21). Data were analyzed using the Wilcoxon signed rank test and the Mann Whitney U-test with the significance α =0.05., Results: The knowledge most widely known by parents was about how to perform of oral care (37.3%). All parameters of knowledge about oral hygiene have increased after being given a psycho-educational intervention. Psycho-educational interventions had an effect on reducing psychological distress; depression (p=0.000), anxiety (p=0.001) and stress (p=0.000)., Conclusion: Most parents whose children suffer from cancer experience psychological distress in the form of depression, anxiety and stress with a range of symptoms ranging from mild to moderate. Psycho-educational interventions can increase knowledge about oral hygiene and decrease psychological distress in parents. , .

Background: Improved survival rates of acute lymphoblastic leukemia (ALL) in children are often associated with repeated and prolonged hospitalization, creating an immensely stressful situation for the family., Objective: The aims of this study were to assess perceived family impact and coping during the child's hospitalization for ALL treatment and identify potential predictors of perceived family impact., Interventions/methods: A total of 212 families with children hospitalized participated. The hospitalization impact and coping scales were used to assess perceived family impact and coping, respectively., Results: The mean (SD) total score for perceived family impact was 88.11 (22.39); social impact received the highest average score. The mean (SD) total score for family coping was 39.02 (9.84). A significant decrease in family coping was associated with more readmissions. Predictors of perceived family impact were severity of the child's illness, total days of all admissions, and coping, accounting for 37% of the observed variance., Conclusions: Families were moderately affected by children's hospitalizations; social functioning was most affected. Families' perceived coping effectiveness decreased as the readmissions increased. The higher risk category a child's diagnosis is, the longer a child's hospitalization is, and the less perceived coping effectiveness, the higher family perceived impact., Implications for Practice: The findings provide a direction for the development of family-centered supportive intervention programs. Nurses should be aware that the total days of admission and severity of a child's illness are significant factors associated with perceived family impact and likely justify special attention. Family coping enhancement interventions could alleviate perceived family impact.

Introduction: Our objectives were to assess the quality of life (QoL) of parents of childhood leukemia survivors compared with population norms and to identify the determinants of parents' long-term QoL., Methods: Parents of minors who had survived childhood leukemia participating in the French LEA cohort (Leucémie de l'Enfant et de l'Adolescent-French Childhood Cancer Survivor Study for Leukemia) were asked to complete the French version of the WHOQOL-BREF. Results were compared with age- and sex-matched values from a French reference population. Parents' and survivors' characteristics likely to be associated with QoL, long after the child's leukemia diagnosis, were explored using multivariate analysis., Results: We included 487 parents (mean age 42.9 ± 6.0 years, mean follow-up time from diagnosis 7.3 ± 3.3 years). Compared with the reference population, scores for physical health and social relationships for parents of childhood leukemia survivors were significantly lower (P < 0.001, effect size = 0.24 and P < 0.001, effect size = 0.29, respectively) contrary to scores for psychological health which were significantly higher (P < 0.001, effect size = 0.29). Even if health- and cancer-related characteristics were associated with parents' QoL in some dimensions, the only factor associated with each of the three dimensions (social relationships, physical health, and psychological) in the multivariate analysis was the parent's financial situation., Conclusions: Long after leukemia diagnosis, the parents reported lower scores in the physical health and social relationship domains. Despite the difficulties of actually influencing socioeconomic characteristics, it is important to consider the social situation of each family in the long-term care of survivors and their families., (© 2020 Wiley Periodicals, Inc.)

This study sought to characterize auditory attention functioning among pediatric Acute Lymphoblastic Leukemia (ALL) survivors treated on a chemotherapy-only protocol, given previous literature suggesting late impact on sustained visual attention. We hypothesized similar deficits would be observed in auditory attention relative to previous literature indicating weakness with aspect of visual attention in this population. Survivors (n =  107, 53 females, M = 12.80 years) completed the Conners Continuous Auditory Test of Attention (CATA). Parents completed the Behavior Assessment System for Children, Second Edition and reported educational performance and services via structured questionnaire. Results indicated several CATA indices associated with sustained auditory attention were significantly worse than normative data, though group means were average. Reflecting individual variability in performance, 50% of the sample performed worse than one standard deviation from the mean on at least one CATA variable. Parent report of attention did not differ from normative means for the sample. Parent-report data indicated that 60% of the sample utilized academic support services, with a large proportion of survivors having utilized special education services. Poorer performance with sustained auditory attention was associated with poor academic outcomes. Greater methotrexate exposure and younger age at diagnosis were risk factors for inattentiveness. No gender differences were identified on direct assessment of auditory attention or parent report of attention, though male gender was associated with poorer educational performance. Findings suggest that auditory attention is an at-risk cognitive domain following treatment for pediatric ALL, and that an association exists between auditory attention and school performance in this population.

Objective: As survival rates increase, growing numbers of childhood acute lymphoblastic leukemia (ALL) survivors are at risk for somatic and psychosocial late effects. Adolescent and young adult (AYA) survivors represent a distinct and vulnerable group. This study aimed to explore how AYA survivors of childhood ALL experience everyday life after cancer while adjusting to the potential impact of prior disease and treatment., Methods: Semi-structured interviews were performed with survivors aged 15-22 years. Criterion-based homogenous purposive sampling was used to identify similarities within the group. Data were analyzed using an inductive, thematic approach., Results: Data saturation occurred after 18 interviews. Identified themes included the post-chemo body, negotiating identities, and disruption. More than 80% reported physical or cognitive late effects, but survivors adapted to these and had a positive view on own health. However, a co-existing experience of frailty persisted. Social disruption during treatment had a negative impact on social relations even years following cure. Identity issues revolved around the paradox of seeking recognition for their cancer-related experiences, while also wanting to be treated like everyone else. Some participants aged 18-22 years experienced delayed reactions and a new, but unmet, need to process the past., Conclusions: AYA survivors of childhood ALL adapt well to their new life situations, but many experience ongoing cancer-related disruptions and experience not being fully understood. We suggest exploration and verbalization of these issues alongside somatic follow-up around the age of 16-18 years to support the AYA survivors during their transition into adulthood., (© 2020 John Wiley & Sons Ltd.)

Individuals treated for childhood acute lymphoblastic leukemia (ALL) have a high survival rate. This fact, however, may lead to neurocognitive impairments in survivors, as shown in some studies. The prefrontal cortex and executive functions seem to be particularly vulnerable due to the late maturation in the development process. Executive impairments have been associated with poorer quality of life in childhood cancer survivors. A systematic review was carried out with studies that assessed executive functions in childhood ALL survivors.\ Studies were collected from five electronic databases: MEDLINE (PubMed); PsycInfo; WebOfScience; LILACS and IBECS. Eighty-four studies were retrieved from the database search, of which 50 were read in full and 26 met the inclusion criteria. The studies were heterogeneous as to the instruments used to assess executive function, the skills assessed and the comparison methods. Despite some discrepancies, ALL survivors seem to exhibit poorer executive functioning than typical controls, but this result did not hold true when subjects were compared to normative mean. Changes in brain structure and dynamics resulting from the disease itself, the toxicity of the treatment and difficulties in coping with the stress during treatment may be related to executive impairments in ALL survivors. Discussion proposed standardized methods and measures for assessing executive functioning in children during and after ALL treatment.

Background: Families who have children with Acute Lymphoblastic Leukemia (ALL) are at high risk of experiencing stress. Stress on the family can cause the formation of negative communication in children so that families tend to spend more time in dealing with negative emotions through negative actions. This study aimed to analyze the correlation between stress, anxiety, and depression in caregiver with pediatric ALL outcome., Methods: A cross sectional study was conducted on children with ALL and their caregivers at the Pediatric Ward, Dr. Soetomo Hospital, Surabaya. Beck Anxiety Inventory (BAI) and Beck Depression Inventory (BDI) questionnaire were used to measure anxiety and depression in caregivers. Previous stressful experiences in children and caregivers were assessed by The Perceived Stress Scale (PSS), Children quality of life was assessed by pediatric quality of life inventory (PedsQL™) questionnaire. Pearson and Spearman correlation strength test was performed for the statistical analysis., Results: There is no significant correlation between stress level of caregivers with the quality of life of children with ALL (P > 0.05). There is negative correlation between the level of anxiety and depression in caregivers with the quality of life of children (P < 0.05). There is negative correlation between children stress level with the quality of life of children (P < 0.05)., Conclusion: The psychological condition of the caregiver affects the quality of life of children. The higher the level of anxiety and depression in caregivers, the lower the quality of life of children., .

Objective: Sleep disturbances have been identified by patients with cancer as common and distressing; however, conflicting evidence about the prevalence of these outcomes exists for survivors of childhood cancers. Additionally, little is known about how the experience of cancer might impact survivor siblings' sleep. The current study compared the sleep of survivors of acute lymphoblastic leukemia who were 2-7 years off therapy and their siblings to healthy control/sibling dyads., Methods: Participants (survivors, n = 45; survivor siblings, n = 27; controls, n = 45; control siblings, n = 41; 58% male) aged 8-18 (m = 11.64) completed a 7-day sleep diary and seven consecutive days of actigraphy. Parents (n = 90) completed the Children's Sleep Habits Questionnaire for each of their children., Results: No between-group differences were found on measures of sleep diaries or actigraphy. Parents reported that survivor siblings had significantly poorer sleep habits than survivors or controls. For survivors, greater time off treatment and younger age at diagnosis were associated with less total sleep time, more wake after sleep onset, and decreased sleep efficiency via actigraphy., Conclusion: Sleep across all groups was consistent and below national guidelines. Although the survivor group did not have poorer sleep compared to their siblings or matched controls, within the survivor group, those who were diagnosed at an earlier age and those who were further off treatment had more disrupted sleep. Parent reports suggested that survivor siblings may be at risk for sleep problems., (© The Author(s) 2020. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: The present study examined the extent to which social support (SS) availability and satisfaction could predict the extent of caregiver burden (CB) among mothers of children with Acute Lymphocytic Leukemia (ALL)., Method: The study was a cross-sectional, descriptive-correlative study. It was conducted on a sample of 117 mothers whose children were undergoing treatment in a public hospital in Bam, Iran. The Norbeck Social Support Scale and the Caregiver Burden Scale were used to measuring study variables. The data were analyzed using Pearson's correlations, t-tests, ANOVAs, and linear regressions., Results: Significant correlations were observed between CB and SS availability (r = -0.499, p < 0.001), SS satisfaction (r = -0.543, p < 0.001), the age of the child with cancer (r = -0.22, p = 0.01), and duration of treatment (r = 0.336, p < 0.001). Married mothers experienced less CB than those that were widowed or divorced. Within the regression equation, SS satisfaction, SS availability, marital status, and duration of treatment were the predictors of CB., Significance of Results: Based on the results of the current study, mothers who have less SS, especially those who are single mothers, with younger children, and who have taken care of their child for an extended duration should be given special attention. Furthermore, it appears that there are distinct cultural variations amongst Iranian mothers which suggest that culture may impact upon SS availability. Results also suggest a need for interventions that enhance nurses' ability to provide support to caregivers and the broader family unit as a whole. Nurses in cancer care need to have psychological competencies to help family members of cancer patients especially mothers and more so those that are single mothers. As integral members of the patient care experience, nurses may be uniquely positioned to provide this needed psychosocial support.

There is little information about how diet influences the health of childhood acute lymphoblastic leukemia (cALL) survivors. This study explores the associations between diet quality indices, cardiometabolic health indicators and inflammatory biomarkers among cALL survivors. Participants were part of the PETALE study ( n = 241, median age: 21.7 years). Adherence to 6 dietary scores and caloric intake from ultra-processed foods were calculated. Multivariate logistirac regressions, Student t -tests and Mann-Whitney tests were performed. We found that 88% of adults and 46% of children adhered poorly to the Mediterranean diet, 36.9% had poor adherence to the World Health Organisation (WHO) recommendations and 76.3% had a diet to be improved according to the HEI-2015 score. On average, ultra-processed foods accounted for 51% of total energy intake. Low HDL-C was associated with a more inflammatory diet (E-DIITM score) and higher intake of ultra-processed foods. A greater E-DII score was associated with elevated insulin resistance (HOMA-IR), and consumption of ultra-processed foods was correlated with high triglycerides. Circulating levels of TNF-α, adiponectin and IL-6 were influenced by diet quality indices, while CRP and leptin were not. In conclusion, survivors of cALL have poor adherence to dietary recommendations, adversely affecting their cardiometabolic health.

Pediatric acute lymphoblastic leukemia survivors are at risk for developing neurocognitive late effects following intensive medical treatment. Motor impairments have been highlighted as a common neurocognitive late effect, including fine-, gross-, and visual-motor skills. The severity of these motor deficits is variable in the existing literature, warranting additional investigations with more homogenous samples. In addition, there is an even greater paucity regarding the interrelations between motor deficits and the impact motor challenges may have on other domains of functioning, such as academics. Therefore, the present study aimed to characterize motor functioning in children who were treated for acute lymphoblastic leukemia with chemotherapy ( n  = 13) in comparison to healthy controls ( n = 13). Additionally, this study investigated the relationship between primary (e.g., visual-spatial, fine-motor), secondary (e.g., visual-motor), and tertiary (e.g., academics) skills. The results revealed that oncology survivors had significantly lower fine- and gross-motor skills compared to healthy controls. No significant differences were observed between the groups on visual-perception and visual-motor tasks. Fine-motor functioning was significantly associated with visual-motor functioning in ALL survivors. Motor skills were not related to academic outcomes. The present findings provide evidence for motor impairments in pediatric ALL survivors, along with initial findings highlighting the cascading effect of primary motor impairments on other cognitive domains. This research sheds light on the need for clinical screening and intervention of motor skills in the survivorship population. Future research is warranted to examine the effect of motor deficits on cognitive and psychosocial functioning in pediatric oncology.

Objectives: The frequency of cognitive difficulties in childhood cancer survivors varies according to the measurement strategy. The goal of this research is to (a) describe agreements and differences between measures of working memory and attention (b) identify contributors of these differences, such as emotional distress, affects, and fatigue., Methods: We used data available for 138 adults successfully treated for childhood acute lymphoblastic leukemia (ALL) (PETALE cohort). Working memory and attention were assessed using subtests from the WAIS-IV and self-reported questionnaires (BRIEF-SR and CAARS-S:L). Potential contributors included emotional distress, anxiety, depression (BSI-18), affects (PANAS), and fatigue (PedsQL-MFS). We explored measurement agreements and differences using diagnostic indices and multivariate regression models., Results: The frequencies of working memory and attention deficits were higher when using cognitive tests (15%-21%) than with self-reports (10%-11%). Self-reported questionnaires showed high specificity (median 0.87) and low sensitivity (median 0.10), suggesting they did not reliably identify positive cases on cognitive tests. We identified negative affectivity as a possible contributor to inconsistencies between self-report and test results., Conclusions: When measuring working memory and attention in childhood ALL survivors, cognitive test results and self-reports should not be considered equivalent. At best, self-report may be used for screening (high specificity), but not to assess prevalence in large samples. Self-reported difficulties are also probably influenced by the negative mood in this population., (© 2020 John Wiley & Sons, Ltd.)

Introduction: Acute lymphoblastic leukaemia (ALL) is one of the most common neoplasms in children, that is. 3,000 new cases are diagnosed in the USA each year. The assessment of the quality of life (QoL) by the patient is the important indicator of the effects of treatment by the means of physical, psychical and social functioning., Aim: The aim of the study was to evaluate the QoL of children treated for ALL and the stress levels of their parents. Additionally, the impact of the most common symptoms on perceived QoL was analysed., Material and Methods: Seventy-four patients with ALL (mean age 9.03) were enrolled in the study. The questionnaire of Paediatric Quality of Life (PedsQL) and the medical records as the source of the socio-clinical data were applied in this study., Results: In QoL assessment, the social functioning reached the highest score (67.57 ± 21.33), and physical functioning - the lowest score (51.1 ± 25.59). The analysis of the symptoms showed that the most intensive were stress (7.19 ± 2.71), fatigue and weakness (5.19 ± 2.76). In Spearman's rank correlation analysis the depressed mood, fatigue and weakness were significant negative predictors influencing QoL in all the domains of PedsQoL. In the linear regression analysis only the depressed mood was the significant independent determinant of the decreased QoL in the majority of the domains of PedsQoL, respectively: the general QoL (β = -0.314; p = 0.002); psychosocial functioning (β = -3.44; p < 0.01); role functioning (β = -3.18; p = 0.004); social functioning (β = -3.5; p = 0.007) and emotional functioning (β = -3.012; p = 0.002)., Conclusions: Quality of life of children with ALL is decreased and of the lowest value in the range of physical health. The factors negatively influencing the QoL are depressed mood, fatigue and weakness. The significant independent determinant of the decreased QoL is children's depressed mood., (© 2019 Nordic College of Caring Science.)

Background: Adherence to oral chemotherapy, including 6-mercaptopurine (6-MP), is suboptimal in pediatric acute lymphoblastic leukemia (ALL), which is associated with increased risk of relapse. Study objectives were to examine self-reported adherence to 6-MP and related barriers to adherence, mapped to the capability, opportunity, motivation, and behavior (COM-B) model for behavior change., Procedure: Forty-nine parents (median, 39 years old; 76% females) and 15 patients (median, 17 years old, 20% females) completed the study survey., Results: Suboptimal adherence was reported in 43% of parents and 73% of patients. Most parents and patients (80% and 90%, respectively) reported ≥1 adherence barrier. Parents reported difficulty helping their child meet others with ALL (43%), contacting community organizations (39%), and meeting other parents (37%). Patients reported difficulty finding out what their medications are (40%), finding out what 6-MP does (47%), and meeting other patients (40%). Using the COM-B, we found that parents and patients endorsed barriers in multiple components, especially physical (55%, 67%) and social opportunity (56%, 47%), highlighting that barriers to adherence may be multifaceted., Conclusions: Our results suggest that parents and patients with ALL face various prevalent barriers to medication adherence and provide insight into the development of behavioral interventions focused on promoting adherence, which is essential to prevent relapse and optimize health outcomes in ALL., (© 2020 Wiley Periodicals, Inc.)

Background: Cognitive fatigue after childhood cancer is frequently overlooked despite guidelines recommending follow-up, and might be mistaken for depression due to overlapping symptoms. Our objectives were: 1) to examine ratings of fatigue in survivors of paediatric brain tumours (BT) and acute lymphoblastic leukaemia (ALL) compared to healthy controls, 2) to examine the relationship between symptoms of depression and cognitive fatigue, and 3) to evaluate parent-child concordance in ratings of cognitive fatigue., Methods: Survivors of BT (n = 30), survivors of ALL (n = 30), and healthy controls (n = 60) aged 8-18 years completed the Pediatric Quality of Life Multidimensional Fatigue Scale and the Beck Youth Inventories. Associations between cognitive fatigue, diagnosis and depression were assessed with general linear modelling. Group differences were analysed using the Kruskal-Wallis test. Parent-child concordance was investigated with internal consistency reliability., Results: Cognitive fatigue was prevalent in 70% of survivors of BT survivors and in 30% of survivors of ALL. Diagnosis was the main predictor of cognitive fatigue (p < .001, η p 2  = 0.178), followed by depression (p = .010, η p 2  = 0.080). Survivors of BT reported significantly more fatigue than healthy controls on all fatigue subscales. While they also expressed more symptoms of depression, we found no evidence for an interaction effect. Parent-child concordance was moderate to good among survivors, but poor for controls., Conclusions: Survivors of BT and ALL suffer from cognitive fatigue, with survivors of BT expressing more problems. Cognitive fatigue and depression should be assessed in survivors of childhood cancer using both self-rated and proxy-rated measures, and appropriate interventions offered.

The purpose of this study is to assess psychosocial risk across several pediatric medical conditions and test the hypothesis that different severe or chronic pediatric illnesses are characterized by disease specific enhanced psychosocial risk and that risk is driven by disease specific connectivity and interdependencies among various domains of psychosocial function using the Psychosocial Assessment Tool (PAT). In a multicenter prospective cohort study of 195 patients, aged 5-12, 90 diagnosed with acute lymphoblastic leukemia (ALL), 42 with epilepsy and 63 with asthma, parents completed the PAT2.0 or the PAT2.0 generic version. Multivariate analysis was performed with disease as factor and age as covariate. Graph theory and network analysis was employed to study the connectivity and interdependencies among subscales of the PAT while data-driven cluster analysis was used to test whether common patterns of risk exist among the various diseases. Using a network modelling approach analysis, we observed unique patterns of interconnected domains of psychosocial factors. Each pathology was characterized by different interdependencies among the most central and most connected domains. Furthermore, data-driven cluster analysis resulted in two clusters: patients with ALL (89%) mostly belonged to cluster 1, while patients with epilepsy and asthma belonged primarily to cluster 2 (83% and 82% respectively). In sum, implementing a network approach improves our comprehension concerning the character of the problems central to the development of psychosocial difficulties. Therapy directed at problems related to the most central domain(s) constitutes the more rational one because such an approach will inevitably carry over to other domains that depend on the more central function., Competing Interests: The authors have declared that no competing interests exist.

Introduction: More than two thirds of survivors have long-term adverse effects, and no study proposes a portrait of physical activity level in childhood acute lymphoblastic leukemia survivors. The aims of this study were to present the cardiorespiratory fitness (CRF) levels of survivors detailed overview sedentary activities portrait., Methods: A total of 247 childhood acute lymphoblastic leukemia survivors were included in our study. Survivors underwent a cardiopulmonary exercise test on ergocycle and completed physical activity and sedentary questionnaires to assess their leisure physical and sedentary activities and total daily energy expenditure., Results: Up to 67% of survivors (84% below 18 y and 60% 18 y of age or above) did not fulfill the physical activity guidelines. Their CRF was reduced by almost 16% in regard to their predicted maximum oxygen consumption (VO2peak). Almost three quarters of the survivors (70% below 18 y and 76% 18 y of age or above) spent >2 hours/day in leisure sedentary activities. Adult survivors who received high doses of anthracyclines and those who received radiation therapy had decreased odds to spend ≥2 hours/day in sedentary activities., Conclusions: Our results showed that survivors, especially children, were not active enough and had a reduced CRF. This study highlights the importance of promoting physical activity in survivors, especially because they are exposed to an increased risk of chronic health problems, which could be mitigated by physical activity.

CD19-targeted chimeric antigen receptor (CAR) modified T cell immunotherapy is a novel treatment with promising results in patients with relapsed/refractory lymphoid malignancies. CAR T cell therapy has known early toxicities of cytokine release syndrome and neurotoxicity, but little is known about long-term neuropsychiatric adverse effects. We have used patient-reported outcomes, including Patient-Reported Outcomes Measurement Information System (PROMIS) measures, to assess neuropsychiatric and other patient-reported outcomes of 40 patients with relapse/refractory chronic lymphocytic leukemia, non-Hodgkin lymphoma, and acute lymphoblastic leukemia 1 to 5 years after treatment with CD19-targeted CAR T cells. Mean T scores of PROMIS domains of global mental health, global physical health, social function, anxiety, depression, fatigue, pain, and sleep disturbance were not clinically meaningfully different from the mean in the general US population. However, 19 patients (47.5%) reported at least 1 cognitive difficulty and/or clinically meaningful depression and/or anxiety, and 7 patients (17.5%) scored ≤40 in global mental health, indicating at least 1 standard deviation worse than the general population mean. Younger age was associated with worse long-term global mental health (P = .02), anxiety (P = .001), and depression (P= .01). Anxiety before CAR T cell therapy was associated with increased likelihood of anxiety after CAR T cell therapy (P = .001). Fifteen patients (37.5%) reported cognitive difficulties after CAR T cell therapy. Depression before CAR T cell therapy was statistically significantly associated with higher likelihood of self-reported post-CAR T cognitive difficulties (P = .02), and there was a trend for an association between acute neurotoxicity and self-reported post-CAR T cognitive difficulties (P = .08). Having more post-CAR T cognitive difficulties was associated with worse global mental health and global physical health. Our study demonstrates overall good neuropsychiatric outcomes in 40 long-term survivors after CAR T cell therapy. However, nearly 50% of patients in the cohort reported at least 1 clinically meaningful negative neuropsychiatric outcome (anxiety, depression, or cognitive difficulty), indicating that a significant number of patients would likely benefit from mental health services following CAR T cell therapy. Younger age, pre-CAR T anxiety or depression, and acute neurotoxicity may be risk factors for long-term neuropsychiatric problems in this patient population. Larger studies are needed to confirm these findings., (Copyright © 2019 American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

Objectives: To describe the needs and formal assessment of family caregivers and ways to intervene to alleviate distress and enhance caregiving skills in the setting of adult and pediatric leukemia., Data Sources: Literature review, clinical practice observations and experiences., Conclusion: While rapid treatment advances in leukemia are a welcome development, the reliance on complex care delivered by family members across settings continues to grow and, concomitantly, so does the risk of mental, physical, and economic burden., Implications for Nursing Practice: Oncology nurses and other clinicians should systematically incorporate screening and assessment services so that educational and referral needs are identified and intervened upon., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: Chemical coping is an inappropriate method for dealing with stress through the use of opioids; it is considered the stage prior to abuse and dependence. In patients with cancer, it is important to evaluate the risk of chemical coping when using opioids. There are some pediatric opioid use-related tolerances and addictions; however, no mention of chemical coping has been found., Case Presentation: We present a case of an 11-year-old Japanese boy with acute lymphocytic leukemia. After transplantation, he complained of abdominal and articular pain, which are considered as symptoms of graft-versus-host disease; thus, opioid therapy was initiated, and the dose was gradually increased for pain management, resulting in a high dose of 2700 μg/day of fentanyl (4200-4700 μg/day including the rescue dose). After switching from fentanyl to oxycodone injections, he continued to experience pain, and there was no change in the frequency of oxycodone rescue doses. Physically, his pain was considered to have alleviated; thus, there was the possibility of mental anxiety resulting in the lowering of pain threshold and the possibility of chemical coping. Mental anxiety and stress with progress through schooling was believed to have resulted in chemical coping; thus, efforts were made to reduce the boy's anxiety, and opioid education was provided. However, dose reduction was challenging. Ultimately, with guidance from medical care providers, the opioid dose was reduced, and the patient was successfully weaned off opioids., Conclusions: When chemical coping is suspected in pediatric patients, after differentiating from pseudo-addiction, it might be necessary to restrict the prescription for appropriate use and to provide opioid education while taking into consideration the emotional background of the patient that led to chemical coping.

Purpose: Despite survival rates greater than 90%, treatment for paediatric acute lymphoblastic leukaemia (ALL) remains challenging for families. The early post-treatment phase is an especially unique time of adjustment. The primary aim of this review was to identify and synthesise research on health-related quality of life (HRQoL) for patients up to five years post-treatment. The secondary aim was to identify if theorised risk/resistance model factors could explain any variance in reported HRQoL., Methods: We conducted a systematic review using the PRISMA guidelines across five databases: Embase, Medline, Psychinfo, Pubmed, and Cochrane. Only studies examining HRQoL up to five years post-treatment were included. Studies were excluded if they covered periods greater than five years post-treatment or did not differentiate between patients with ALL and other cancers. After assessing the quality of each study sample size, patient characteristics, HRQoL outcomes and HRQoL correlates were extracted and summarised., Results: A total of 14 studies representing 1254 paediatric patients, aged 2-18 years, were found. HRQoL findings were mixed, dependent on time since completion and comparison group. Patient HRQoL was mostly lower compared to normative data, whilst higher compared to healthy control groups, patients on treatment, and patients with other types of cancers. Lower HRQoL was also found to be associated with demographic (age and sex), family dysfunction, and treatment-related factors., Conclusions: Completing treatment signalled a significant improvement in HRQoL for patients compared to being on treatment. Overall, however, HRQoL was still significantly lower than the population during the early post-treatment period.

Introduction : There is increasing concern for adverse cognitive late effects among survivors of pediatric acute lymphoblastic leukemia (ALL) given the widespread impact they have on academic achievement, particularly working memory and attention. We assessed performance among survivors and their healthy peers on a dual task paradigm measuring visual working memory (VWM) and visual attention independently and the dynamic relationship between the two. Assessing specific subsets within cognitive domains allows for understanding the distinct nature of cognitive impairments. Method : Participants were 34 survivors of ALL who have been off-treatment and disease free for 7.5 years; and 20 healthy controls, all between the ages of 10 and 18 years. We utilized behavioral single- and dual-task paradigms. In the dual tasks, participants maintained several items in VWM while performing a visual attention task (Eriksen Flanker Task) that required processing of a target stimulus while inhibiting the processing of distractor stimuli. The single tasks involved performing only the VWM task or only the visual attention task. Results : Results revealed survivors of ALL performed significantly worse than their healthy peers on the single visual attention task but not the single VWM task. Of particular interest, group differences were obtained on the dual VWM and visual attention tasks, such that the VWM and attention tasks reciprocally interfered with each other only among survivors and not their healthy peers. Conclusions : Our results highlight a core deficit in visual attention that is exacerbated by VWM demands among survivors of ALL. The implementation of tasks from cognitive neuroscience paradigms may be sensitive to cognitive impairments experienced by cancer survivors. Assessment and intervention practices among survivors of pediatric ALL are discussed.

Corticosteroids play an essential role in the treatment of pediatric malignancies, but have many untoward side effects including behavioral and mood disturbances which can be quite burdensome to families. Potassium chloride has been used anecdotally to decrease these neuropsychiatric effects but this experience has not been studied systematically. We therefore retrospectively reviewed our experience utilizing KCl supplementation to reduce corticosteroid-induced neuropsychiatric effects among children with acute lymphoblastic leukemia. Thirteen of 16 patients (81%) had a objective benefit with KCl at a median dose of 0.5 mEq/kg/day, with no reported adverse effects. Further prospective study is required to confirm these data.

Objective : The purpose of this study was to characterize post-chemotherapy sensory, memory, and attention abilities in childhood survivors of acute lymphoblastic leukemia (ALL) to better understand how treatment affects cognitive functioning. Methods : Eight ALL survivors and eight age-matched, healthy children between the ages of 5-11 years participated in the study. Among the ALL survivors, a median of 63 days (range 22-267 days) elapsed between completion of chemotherapy and this assessment. Sounds were presented in an oddball paradigm while recording the electroencephalogram in separate conditions of passive listening and active task performance. To assess different domains of cognition, we measured event-related brain potentials (ERPs) reflecting sensory processing (P1 component), working memory (mismatch negativity [MMN] component), attentional orienting (P3a), and target detection (P3b component) in response to the sounds. We also measured sound discrimination and response speed performance. Results : Relative to control subjects, ALL survivors had poorer performance on auditory tasks, as well as decreased amplitude of the P1, MMN, P3a, and P3b components. ALL survivors also did not exhibit the amplitude gain typically observed in the sensory P1 component when attending to the sound input compared to when passively listening. Conclusions: Atypical responses were observed in brain processes associated with sensory discrimination, auditory working memory, and attentional control in pediatric ALL survivors indicating deficiencies in all cognitive domains compared to age-matched controls. Significance : ERPs differentiated aspects of cognitive functioning, which may provide a useful tool for assessing recovery and risk of post-chemotherapy cognitive deficiencies in young children. The decreased MMN amplitude in ALL survivors may indicate (N-methyl D-aspartate) NMDA dysfunction induced by methotrexate, and thus provides a potential therapeutic target for chemotherapy-associated cognitive impairments.

Objective: The current study examined associations between child executive functions and parenting capacities in long-term survivors of childhood acute lymphoblastic leukemia (ALL)., Methods: Participants included 188 parent-child dyads; children were at least 8 years of age, 5 years postdiagnosis of ALL, and previously treated with chemotherapy only. Parents completed the Parental Protection Scale (PPS), Child Vulnerability Scale (CVS), and Decision-Making Questionnaire (DMQ). Children completed measures of executive functioning and general cognitive abilities. Multivariate multiple regression examined associations between child executive functioning and parenting, while controlling for child age, treatment risk, maternal education, and child intelligence quotient. An exploratory aim identified latent profiles of parenting capacities., Results: Higher child cognitive flexibility (β = -0.16, P = .02) and planning abilities (β = -0.16, P = .049) were related to less parental overprotection. No other neurocognitive measures were related to child autonomy in decision making or perceived child vulnerability. For the exploratory aim, we found (a) a large class defined by normative parenting (94.3%) and (b) a small class characterized by higher levels of child vulnerability and overprotection. Class membership was unrelated to executive functioning, but higher maternal education was related to higher odds of class 2 membership (OR = 0.58, P = .04)., Conclusions: Results suggest that parents respond to child executive function difficulties with greater overprotection, which may be adaptive but not conducive to the development of independence. Although most parents report normative levels of child vulnerability and overprotection, a small subset demonstrate parenting practices that may place some survivors at risk for adverse outcomes., (© 2019 Wiley Periodicals, Inc.)

Background: A substantial number of survivors of childhood acute lymphoblastic leukemia suffer from treatment-related late adverse effects including neurocognitive impairment. While multiple studies have described neurocognitive outcomes in childhood acute lymphoblastic leukemia (ALL) survivors, relatively few have investigated their association with individual genetic constitution., Methods: To further address this issue, genetic variants located in 99 genes relevant to the effects of anticancer drugs and in 360 genes implicated in nervous system function and predicted to affect protein function, were pooled from whole exome sequencing data of childhood ALL survivors (PETALE cohort) and analyzed for an association with neurocognitive complications, as well as with anxiety and depression. Variants that sustained correction for multiple testing were genotyped in entire cohort (n = 236) and analyzed with same outcomes., Results: Common variants in MTR, PPARA, ABCC3, CALML5, CACNB2 and PCDHB10 genes were associated with deficits in neurocognitive tests performance, whereas a variant in SLCO1B1 and EPHA5 genes was associated with anxiety and depression. Majority of associations were modulated by intensity of treatment. Associated variants were further analyzed in an independent SJLIFE cohort of 545 ALL survivors. Two variants, rs1805087 in methionine synthase, MTR and rs58225473 in voltage-dependent calcium channel protein encoding gene, CACNB2 are of particular interest, since associations of borderline significance were found in replication cohort and remain significant in combined discovery and replication groups (OR = 1.5, 95% CI, 1-2.3; p = 0.04 and; OR = 3.7, 95% CI, 1.25-11; p = 0.01, respectively). Variant rs4149056 in SLCO1B1 gene also deserves further attention since previously shown to affect methotrexate clearance and short-term toxicity in ALL patients., Conclusions: Current findings can help understanding of the influence of genetic component on long-term neurocognitive impairment. Further studies are needed to confirm whether identified variants may be useful in identifying survivors at increased risk of these complications., Competing Interests: The authors have declared that no competing interests exist.

Background: Treatment for childhood acute lymphoblastic leukemia has evolved over the past five decades, with moderation of traditional chemotherapy and radiotherapy and the introduction of targeted immune-based and cellular-based therapies. The affect of these changes on late health outcomes has not been assessed. Using data from the The St Jude Lifetime (SJLIFE) Cohort, we aimed to characterise the magnitude of morbidity and patterns of late health outcomes among survivors of childhood acute lymphoblastic leukaemia treated over time., Methods: The St Jude Lifetime (SJLIFE) Cohort is a retrospective cohort study with prospective follow-up and ongoing data accrual designed to facilitate longitudinal, clinically-based assessment of health outcomes among survivors of paediatric malignancies. 980 survivors included in this analysis were diagnosed with paediatric acute lymphoblastic leukaemia at St Jude Children's Research Hospital (SJCRH) between Aug 28, 1963, and July 19, 2003, were aged 18 years old and older at enrolment, had a minimum follow-up of 10 years after diagnosis, and completed an initial on-campus SJLIFE assessment as of data cutoff (June 30, 2015). 272 community control participants, matched to survivors on 5-year age blocks in each sex, were recruited for comparison. Cumulative chemotherapy and radiation dose exposures and major medical events during and after therapy were retrieved from the medical records of the survivors. History or physical examination, laboratory analysis, physical fitness, and neurocognitive testing were done. Health conditions were graded according to a modified version of the Common Terminology Criteria for Adverse Events. Neurocognitive domains of attention (Trial Making Test Part A and Conner's Continuous Performance Test-II) and executive function (Trail Making Test Part B, Controlled Oral Word Association Test, and Wechsler Adult Intelligence Scale-III Digit Span Test Backward) were measured and age-adjusted Z scores were calculated. Mean cumulative count was used to calculate the age-standardised cumulative burden of health conditions over time. This cohort study is registered at ClinicalTrials.gov, number NCT00760656., Findings: 980 survivors of acute lymphoblastic leukaemia (50% women, median age at diagnosis 5 years [IQR 3·1-9·1 years], and median time from diagnosis of 30·0 years [22·7-36·3]) had a median age of 35·8 years (29·4-42·9) at assessment compared with 35·1 years (28·7-42·6) for 272 controls. Survivors had significantly more growth hormone deficiency, hypogonadism, and neuropathy than controls. By age 30 years, survivors of acute lymphoblastic leukaemia had, on average, 5·4 (95% CI 5·1-5·8) grade 1-4 health conditions, including 3·2 (2·9-3·4) grade 2-4 health conditions, compared with 2·0 (CI 1·7-2·2) grade 1-4 and 1·2 (1·03-1·4) grade 2-4 health conditions among controls. The cumulative burden of grade 2-4 health conditions involved multiple organ systems for survivors treated on protocols between 1962-91, but after elimination of cranial radiotherapy for children with acute lymphoblastic leukaemia, conditions now predominately include musculoskeletal and endocrine disorders for survivors on protocols between 1991-2007., Interpretation: Although changes in paediatric acute lymphoblastic leukaemia treatment protocols have improved overall survival, the burden of late morbidity remains high for these patients. We show that the pattern of late toxic effects has markedly changed over time, with survivors having a reduction in health conditions that are immediately life-threatening, however, maintaining health status and quality of life for survivors of paediatric acute lymphoblastic leukaemia requires continued medical surveillance, counselling, and lifestyle modifications., Funding: US National Cancer Institute and the American Lebanese Syrian Associated Charities., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

Background: Children with cancer undergo many invasive medical procedures that are often painful and highly distressing, including bone marrow aspiration (BMA) and lumbar puncture (LP). Psychosocial interventions have been demonstrated to reduce children's distress resulting from invasive medical procedures. The aim of the study is to assess the efficacy of psychosocial interventions to reduce distress in children with cancer undergoing BMA and LP in a pediatric cancer center in Taiwan., Methods: Children with cancer who received treatment between March 2015 and December 2016 at Chang Gung Memorial Hospital, Linkou, Taiwan were eligible for the study. The psychosocial intervention comprised preparation and cognitive behavioral intervention and was provided by a certified child life specialist. The assessment instrument was the revised version of the Observational Scale of Behavioral Distress (OSBD-R). The behavioral distress of patients who underwent psychosocial interventions for BMA and LP was compared with patients without interventions. We also analyzed the difference of behavioral distress in patients' pre- and post-psychosocial intervention for BMA and LP., Results: Eighteen patients were enrolled into this study. The mean age of diagnosis of leukemia was 6.6 years old (range: 3-11 years). Fifteen patients were diagnosed with acute lymphoblastic leukemia, and 3 were diagnosed with acute myeloid leukemia. The mean of OSBD-R total scores in 7 patients with psychosocial intervention was significantly lower than the mean score in 6 patients without intervention (0.65 vs. 4.81, p = 0.002). Pre- and post-psychosocial intervention for BMA and LP behavioral distress were evaluated for the remaining 5 patients. Consistently, there was a significant reduction of the OSBD-R score following interventions (3.04 vs. 7.81, p = 0.025)., Conclusion: Psychosocial interventions provided by a certified child life specialist have a significant potential to reduce children's distress during BMA and LP in pediatric healthcare settings in Taiwan., (Copyright © 2018. Published by Elsevier B.V.)

Objective: We investigated the health-related quality of life (HRQL) in survivors of pediatric acute lymphoblastic leukemia (ALL) and evaluated the perceptions of the children, their siblings, and their parents., Materials and Methods: Seventy ALL survivors, who were between 7 and 17 years of age and had completed therapy ≥2 years, were included. The control group consisted of their healthy siblings. HRQL was assessed by the age-specific KINDL R questionnaire., Results: No significant differences could be found among HRQL scores of ALL survivors with respect to variables such as sex, risk group, and having chronic illness. HRQL scores for physical well-being, emotional well-being, family, and social functioning of the patient and sibling self-reports and parent proxy reports were lower than the expected values for healthy and chronically ill children., Conclusion: These results demonstrate that both ALL survivors and their families need help via psychological counseling programs to improve their HRQL even after completion of therapy.