Neurocognitive outcome and associated factors in long-term, adult survivors of childhood acute lymphoblastic leukemia, treated without cranial radiation therapy.

OBJECTIVE: There is limited research on neurocognitive outcome and associated risk factors in long-term, adult survivors of childhood acute lymphoblastic leukemia (ALL), without treatment of cranial radiation therapy. Moreover, the impact of fatigue severity and pain interference on neurocognition has received little attention. In this cross-sectional study, we examined neurocognitive outcome and associated factors in this population. METHOD: Intellectual abilities, verbal learning/memory, processing speed, attention, and executive functions were compared to normative means/medians with one sample t tests or Wilcoxon signed-rank tests. Associations with risk factors, fatigue severity, and pain interference were analyzed with linear regressions. RESULTS: Long-term, adult survivors of childhood ALL (N = 53, 51% females, mean age = 24.4 years, SD = 4.4, mean = 14.7 years post-diagnosis, SD = 3.4) demonstrated above average intellectual abilities, but performed below average in attention, inhibition, processing speed, and shifting (p < 0.001). Executive functioning complaints were significantly higher than normative means, and positively associated with fatigue (p < 0.001). There was no interaction between sex and fatigue and no neurocognitive impairments were associated with pain interference, risk group, age at diagnosis, or sex. CONCLUSIONS: Long-term, adult survivors of ALL treated without cranial radiation therapy, demonstrate domain-specific performance-based neurocognitive impairments. However, continued research on the neurocognitive outcome in this population as they age will be important in the coming years. Executive functioning complaints were frequently in the clinical range, and often accompanied by fatigue. This suggests a need for cognitive rehabilitation programs.

Cognitive and behavioural rehabilitation interventions for survivors of childhood cancer with neurocognitive sequelae: A systematic review.

There is considerable interest in cognitive and behavioural interventions to manage and improve neurocognitive (dys)functions in childhood cancer survivors and the literature is rapidly growing. This systematic review aimed to examine the literature of such interventions and their impact on executive functions (EFs) and attention. A search of relevant manuscripts was performed in PubMed, PsycINFO, and Web of Science in March 2023 in accordance with the PRISMA statement. After screening 3737 records, 17 unique studies published between 2002 and 2022 were charted and summarized. Participants (N = 718) were mostly children (M = 12.2 years), who were long-term survivors (M = 5.0 years post treatment) of brain or CNS tumours (48%). Identified interventions included computerized cognitive training, physical activity, and cognitive interventions with compensatory strategy training. The highest quality RCT studies included computerized training (i.e., Cogmed), neurofeedback, and exergaming. Evidence suggests that Cogmed may improve the performance of certain working memory tasks (near transfer) and possibly improve visual attention tasks for individuals with working memory impairments. However, the evidence did not support far transfer of effects to real life. No significant effects (near or far-transfer) were found following neurofeedback and exergaming interventions. Finally, a knowledge gap was identified for interventions directed at long-term survivors in adulthood.

The development of emotion understanding in children: The importance of parents, teachers, and peers.

Emotion understanding (EU) develops through emotion socialization provided by children's social environments, but the relative importance of various socializing agents has not been determined. In this prospective study, the unique contributions of parents, teachers, and peers to changes in EU from 4 to 8 years of age were therefore investigated in a birth cohort sample of 924 Norwegian children (50.1% boys). A warm parent-child relationship at 4 years of age predicted increased EU at 6 years of age but not from 6 to 8 years of age. A close teacher-child relationship forecasted enhanced EU at both 6 and 8 years of age. The results are in accordance with previous research on parents' roles and bring new knowledge by underscoring the importance of teachers in children's development of EU. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Protective and risk factors in the grieving process among cancer-bereaved parents: A qualitative study.

This Norwegian nationwide study explored cancer-bereaved parents' perceptions of protective and risk factors in their grieving process. A total of 162 parents answered two open-ended questions 2-8 years after their child's death due to cancer. Qualitative analysis revealed three main themes: memories of the child's illness and death, going forward in life, and relationships-a resource and a barrier. The results support the perspective of going forward in life and accepting grief as part of life, contrary to the notion of "getting over" or "detaching" from the deceased child. Social support is also crucial for cancer-bereaved parents.

Impact of resilience and social support on long-term grief in cancer-bereaved siblings: an exploratory study.

BACKGROUND: Bereavement research has mainly explored potential risk factors associated with adverse outcomes, and the role of protective factors has received less attention. More knowledge is needed about factors related to unresolved grief in bereaved siblings. This study aimed to assess grief adjustment and possible gender differences among bereaved young adults 2-10 years after losing a brother or sister to cancer. We also sought to explore how resilience and social support influenced their grief. METHODS: A total of 99 young adults (18-26 years) who had lost a brother or sister to cancer between the years 2009 and 2014 were invited to participate in this Norwegian nationwide study. The study-specific questionnaire was completed by 36 participants (36.4%). Social support during the sibling's illness, after the death, and during the past year, in addition to grief and resilience, were measured. RESULTS: Overall, the prevalence of unresolved grief was 47.2% among bereaved siblings, whereas 52.8% had worked through their grief. The level of having worked through grief and resilience was similar between male and female siblings. Bereaved siblings with higher Personal Competence reported lower unresolved grief. CONCLUSION: Approximately half of the young adults experience unresolved grief 2-10 years after losing a sibling to cancer. The findings also highlight the need for long-term support for bereaved siblings to help improve their resilience and better have worked through their grief.

Cognitive Rehabilitation for Neurocognitive Late Effects in Adult Survivors of Childhood Acute Lymphoblastic Leukemia: A Feasibility and Case-Series Study.

Neurocognitive late effects following the diagnosis and treatment of childhood acute lymphoblastic leukemia (ALL) commonly include impaired executive functions (EFs), with negative consequences for one's health-related quality of life and mental health. However, interventions for EF impairments are scarce. Thus, the aims of this study were to (1) explore the feasibility and acceptability of the cognitive rehabilitation program Goal Management Training (GMT) and (2) examine whether GMT is associated with positive outcomes across cases of ALL survivors with EF complaints. Four participants (median age 31.5 years) underwent nine GMT modules in a total of five group sessions. Rehabilitation was focused on compensatory strategies to improve real-life EFs. Participants were evaluated at 2-week and 6-month follow-ups. Evaluation of feasibility and acceptability included adherence, a semi structured interview, self-reports, and safety. Additionally, therapists' experience with implementation was evaluated. Outcome measures included self-reports and neurocognitive tests of attention, EF, and processing speed. All participants completed GMT and rated the intervention as useful, suitable, and satisfactory. The reliable change index showed improved daily life EFs (two participants) and neurocognitive performance (three participants) at 6-month follow-up. Additionally, all participants improved on a "real-life" task involving EF. A future randomized controlled trial is recommended.

Bereaved parents' quality of life: resilience and professional support.

OBJECTIVES: The study aimed to compare the quality of life (QoL) among cancer-bereaved parents with a control group and explore how resilience and support from healthcare professionals associated with QoL of parents 2-8 years after the loss of a child to cancer. METHODS: This nationwide, cross-sectional survey was administered among parents (n=161) who lost their child to cancer between 2009 and 2014, compared with a matched control parent group (n=77). A study-specific questionnaire, Resilience Scale for Adults (six factors: 'Perception of self', 'Planned future', 'Social competence', 'Structured style', 'Family cohesion' and 'Social resources'), and a single-item measure of parents' QoL were included for the study. RESULTS: There was a lower QoL in both bereaved parents (mean=5.1) compared with the control parents (mean=5.8) (p<0.001). Two resilience factors, 'Perception of self' (OR=1.8, p=0.004) and 'Planned future' (OR=2.05, p<0.001), and given sufficient information during the child's last month (OR=2.63, p=0.003) were positively associated with long-term QoL in cancer-bereaved parents. CONCLUSION: The findings indicate lower QoL among both fathers and mothers 2-8 years after losing a child to cancer. The study also highlights the positive role of resilience and the importance of informational support on long-term QoL in cancer-bereaved parents. Bereavement support should be tailored for supporting individual needs.

Protective and risk factors associated with psychological distress in cancer-bereaved parents: A cross-sectional study.

PURPOSE: Research shows that knowledge about mental health status, both protective and risk factors, is limited in cancer-bereaved parents. The study aimed to investigate (1) the extent of psychological distress in bereaved parents 2-8 years after the loss of a child to cancer compared to non-bereaved parents, and (2) psychological distress in association with resilience, the extent of having coped with the grief, time since the loss, and past psychological distress in cancer-bereaved parents. DESIGN: Retrospective, cross-sectional study. METHODS: A Norwegian nationwide study-specific questionnaire was completed by 162 parents who had lost a child to cancer, and 77 matched non-bereaved parents. We used the Cohort Norway-Mental Health Index and Resilience Scale for Adults to measure psychological distress and resilience, respectively. The extent of having coped with grief was also measured. RESULTS: Bereaved parents experienced significantly more symptoms of psychological distress, albeit not clinical psychological distress, compared to non-bereaved parents. The bereaved parents who have coped with their grief or had higher resilience reported lower psychological distress. Positive "Perception of self" and well "Planned future" were the strongest predictors of psychological distress in both bereaved fathers and mothers. CONCLUSION: Both fathers and mothers experience more psychological distress symptoms 2-8 years after losing a child to cancer than non-bereaved parents. The findings also highlight the need for long-term support to bereaved parents in order to help to improve their resilience and to better cope with their grief.

Primary antibody deficiency: The impact on the quality of life and mental health of affected children and their parents.

AIM: To evaluate health-related quality of life, mental health and treatment-related stress responses in children with primary antibody deficiency and both their parents. METHODS: Children and their parents completed the standardised questionnaires Pediatric Quality of life Inventory, Strength and Difficulties Questionnaire and Impact of Event Scale. Parents also completed standardised questionnaires regarding their own mental health and quality of life. The results were compared to those of healthy children, kidney transplanted children and children in remission from acute lymphoblastic leukaemia. RESULTS: Children with primary antibody deficiency reported a poorer health-related quality of life compared to healthy children and children in remission from acute lymphoblastic leukaemia. They reported poorer mental health compared with healthy children. Mothers of children with primary antibody deficiency reported poorer mental health compared to mothers of healthy children but comparable to mothers of chronically ill children. Parents reported a similar quality of life as the general Norwegian population. Treatment with subcutaneous immunoglobulin infusions at home is generally well tolerated, but some report severe treatment-related stress. CONCLUSION: Primary antibody deficiency has a significant impact on quality of life and mental health of affected children. Patients and parents with severe treatment-related stress should be identified and helped.

A systematic review of self-reported pain in childhood cancer survivors.

AIM: The aim of this systematic review was to examine the frequency and risk factors of pain among long-term childhood cancer survivors based on self-reported questionnaire studies. Participants aged 21 years or younger at the time of their cancer diagnosis were included. METHODS: The Medline (OVID), PubMed and PsycINFO databases were searched for manuscripts published between January 1, 1990, and August 31, 2018, following the PRISMA statement for reporting systematic reviews. RESULTS: In total, 25 studies, including five prospective cohort studies measuring pain up to 32 years post-diagnosis, were identified. Female sex, young age at diagnosis, older age at assessment, greater time since diagnosis, specific diagnoses (such as central nervous system [CNS] tumours, bone tumours and sarcoma), fatigue and persistent emotional distress were associated with cancer-related pain. The most common pain types were migraines, headaches and back pain. CONCLUSION: A subset of childhood cancer survivors reported clinically significant self-reported pain. Identifying survivor subgroups at risk for pain could be essential for developing tailored intervention and prevention strategies. Prospective studies that use standardised and psychometrically sound tools to evaluate pain are needed.

Neurocognitive Outcome and Compensating Possibilities in Children and Adolescents Treated for Acute Lymphoblastic Leukemia With Chemotherapy Only.

Aim: To examine the neurocognitive outcomes in children and adolescents with acute lymphoblastic leukemia (ALL) in remission who were treated with systemic chemotherapy only (CTO). Methods: Neurocognitive performances in 36 children and adolescents, aged 8.4-15.3 years, in long-term remission from ALL 4.3-12.4 years post diagnosis, without relapse, and with no pre-diagnosis history of neurodevelopmental disorder were compared with 36 healthy controls matched for gender, age, and parents' socio-economic status. The former patients and the healthy controls completed an extensive battery of standardized neuropsychological tests. Results: Survivors who were treated by CTO obtained significantly lower scores than did healthy controls on the domains of Copy and drawing (p = 0.001; Cohen's d 0.85; after controlling for Type 1 errors q = 0.006), Arithmetic (p = 0.001; Cohen's d 0.80; after controlling for Type 1 errors, q = 0.006), and Tactile sensory functions (p = 0.008; Cohen's d 0.65; after controlling for Type 1 errors, q = 0.03). Fifty percent of the ALL group were more than 1 SD below the control groups mean on Copy and drawing. There was an interaction between age and group (ALL vs. Control, p = 0.042) on Copy and drawing, indicating that the youngest ALL patients exhibited the worst performance. The oldest ALL patients performed equal to or better than the controls. A tendency in the same direction was seen for Arithmetic and Tactile sensory functions. The ALL survivors exhibited a steeper rising learning slope on repeated tests, with lower scores on a tactile problem-solving task, tactile sensory tests, verbal memory, and visual attention, but they performed as well as the controls when stimuli were repeated. Conclusion: The results indicate that neurocognitive long-term sequelae in ALL survivors are limited to specific domains - particularly complex drawing, arithmetic, and tactile processing, and novelty processing. Cognitive deficits are shown among the youngest ALL patients. Intervention programs and school programs should account for difficulties with processing new information and taking advantage of repetitions as a strength, which may prevent survivors from falling behind their peers.

Resilience as a predictive factor towards a healthy adjustment to grief after the loss of a child to cancer.

INTRODUCTION: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common non-accidental cause of death among children in Norway. The aim of the present study was to explore if resilience factors among cancer-bereaved parents could predict whether they will be able to come to terms with their grief 2-8 years following the loss. METHODS: A Norwegian cross-sectional national survey was conducted among 161 cancer-bereaved parents using a study-specific questionnaire. Logistic regression was used to explore whether resilience factors predicted parents' grief outcome 2-8 years after their loss. RESULTS: On the Resilience Scale for Adults (RSA), three of the resilience factors contributed significantly in predicting whether the parents in the present study would come to terms with their grief 2-8 years after the loss their child: "Perception of self "(OR 2.08, p = .048), "Social resources" (OR 2.83, p = .008) and "Family cohesion" (OR .41, p = .025). The results showed a negative relationship between time since loss (2-6 years) and whether the parents answered that they had come to terms with their grief (p = < .05). The loss of a parent (OR .30, p = .030) combined with the loss of their child had a negative and significant effect on whether they indicated that they had processed their grief. CONCLUSION: The total score of RSA and three of the six resilient factors contributed significantly in predicting whether cancer-bereaved parents in the present study indicated that they had come to terms with their grief to a great extent. The present study supports hypotheses that regard resilience as an important contribution in predicting healthy outcomes in people exposed to adverse life events.

Health-related quality of life and psychological distress in young adult survivors of childhood cancer and their association with treatment, education, and demographic factors.

PURPOSE: This study investigated health-related quality of life (HRQOL) and psychological distress among young adult (YA) survivors of childhood cancer and the association of these measures with treatment, education, and demographic factors ≥ 5 years post diagnosis. METHODS: Participants included cancer survivors (n = 91) recruited through the Cancer Registry of Norway (CRN) and healthy controls (n = 223) recruited from a student population. All participants completed self-report questionnaires, and the Pediatric Quality of Life Inventory (PedsQL™) 4.0 and the Hopkins Symptom Checklist-10 (HSCL-10) as a measure of HRQOL and distress, respectively. RESULTS: Survivors reported HRQOL at the same level as controls, except for poorer physical functioning. Survivors in general, and female survivors specifically, had higher odds than controls of reporting symptoms of distress above cut-off, but survivors did not have higher mean levels of distress compared to controls. Survivors reporting distress levels above the cut-off had significantly poorer HRQOL regarding physical functioning and lower total PedsQL scores than controls scoring above the cut-off. Age (for HRQOL only), female gender, low educational level, and perceived low economic status significantly predicted HRQOL and distress. Education interacted with the effect of cranial radiation in predicting HRQOL. CONCLUSIONS: Survivors reported similar mean levels of HRQOL and distress as controls, except for physical functioning. For cancer survivors, demographic variables predicted HRQOL and distress. Some groups of survivors require closer follow-up, and more attention should be paid to factors associated with poor HRQOL and psychological distress in survivors, including female gender, lower education level, and lower income. Survivors treated with cranial radiation may be particular vulnerable in combination with low education regarding HRQOL.

A Review of Demographic, Medical, and Treatment Variables Associated with Health-Related Quality of Life (HRQOL) in Survivors of Hematopoietic Stem Cell (HSCT) and Bone Marrow Transplantation (BMT) during Childhood.

Hematopoietic stem cell transplantation (HSCT) is a standard treatment after disease relapse and failure of conventional treatments for cancer in childhood or as a first line treatment for some high-risk cancers. Since hematopoietic stem cells can be found in the marrow (previously called a bone marrow transplantation) or periphery, we refer to HSCT as inclusive of HSCT regardless of the origin of the stem cells. HSCT is associated with adverse side effects, prolonged hospitalization, and isolation. Previous studies have shown that survivors of HSCT are at particularly high risk for developing late effects and medical complications, and thus, in addition to survival, quality of life in survivors of HSCT is an important outcome. This review summarizes and distills findings on the health-related quality of life (HRQOL) of long-term childhood cancer survivors of HSCT and examines significant sociodemographic, medical, disease and treatment correlates of HRQOL, as well as the methodology of the studies (instruments, type of studies, timing of assessment, type of transplantation). Because previous reviews covered the studies published before 2006, this review searched three databases published between January, 2006, and August, 2016. The search identified nine studies, including 2 prospective cohort studies and 7 cross-sectional studies. All studies reported a follow-up time of >5 years. The review found that HRQOL is significantly impacted over time following childhood HSCT, with salient correlates of HRQOL found to be presence of a severe chronic health or major medical condition, graft vs. host disease (GVHD), or pain. Continual evaluation of HRQOL must be integrated into long-term follow-up after childhood HSCT, and intervention should be offered for those survivors with poor HRQOL. Longitudinal studies should be emphasized in future research to allow for predictor models of resilience and poor HRQOL.

Resilience factors play an important role in the mental health of parents when children survive acute lymphoblastic leukaemia.

AIM: Childhood cancer is a tremendous stressor that requires parents to adapt to new challenges, and research has mainly focused on psychopathology and rarely on a resource-oriented perspective, such as resilience. This study assessed resilience factors among parents of children surviving acute lymphoblastic leukaemia and parents of healthy children. We also explored the association between parental resilience and mental health. METHODS: The study compared 57 parents of 40 children from eight to 15 years of age in remission from acute lymphoblastic leukaemia and 63 parents of 42 healthy children. The Resilience Scale for Adults and the General Health Questionnaire were used to assess parental resilience and mental health. RESULTS: Parents of children surviving acute lymphoblastic leukaemia showed significantly lower levels of resilience than parents of healthy children, but no significant difference was found for mental health. Certain resilience factors were positively associated with mental health, especially for mothers, such as family cohesion, good perception of self and being able to plan their future. CONCLUSION: Resilience factors may help to protect parents' mental health, especially mothers, when their child has survived acute lymphoblastic leukaemia and should be considered in a clinical setting. Further research on resilience factors for fathers is needed.

Predictors of change in depressive symptoms from preschool to first grade.

Children's depressive symptoms in the transition from preschool to school are rarely investigated. We therefore tested whether children's temperament (effortful control and negative affect), social skills, child psychopathology, environmental stressors (life events), parental accuracy of predicting their child's emotion understanding (parental accuracy), parental emotional availability, and parental depression predict changes in depressive symptoms from preschool to first grade. Parents of a community sample of 995 4-year-olds were interviewed using the Preschool Age Psychiatric Assessment. The children and parents were reassessed when the children started first grade (n = 795). The results showed that DSM-5 defined depressive symptoms increased. Child temperamental negative affect and parental depression predicted increased, whereas social skills predicted decreased, depressive symptoms. However, such social skills were only protective among children with low and medium effortful control. Further, high parental accuracy proved protective among children with low effortful control and high negative affect. Thus, interventions that treat parental depression may be important for young children. Children with low effortful control and high negative affect may especially benefit from having parents who accurately perceive their emotional understanding. Efforts to enhance social skills may prove particularly important for children with low or medium effortful control.

What enhances the development of emotion understanding in young children? A longitudinal study of interpersonal predictors.

We studied potential determinants of the development of children's emotion understanding (EU) from age 4 to 6 in a Norwegian community sample (N = 974) using the Test of Emotion Comprehension. Interpersonal predictors included the accuracy of parental mentalization, parental emotional availability, and teacher-reported child social skills. Intrapersonal child factors were child gender and verbal skills. Overall, children's EU increased significantly over time. After adjusting for child gender, age-4 EU, and parental socio-economic status, greater child verbal and social skills and greater parental mentalization each uniquely predicted growth in EU. Results are discussed in terms of theory and research on children's EU and parents' emotion socialization.

Kidney transplantation in childhood: mental health and quality of life of children and caregivers.

Our objective was to assess the mental health and health-related quality of life (HRQOL) in children and their parents after renal transplantation (TX) compared to healthy controls and children with acute lymphoblastic leukemia (ALL) and to identify possible health status variables associated with impaired mental health and HRQOL. Thirty-eight TX children with a median age of 13 (range 3-19) years were investigated. Mental health was assessed by the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and the Strength and Difficulties Questionnaire (SDQ-20). Each mother's own mental health and QOL were assessed by the General Health Questionnaire (GHQ-30) and the Quality of Life Scale (QOLS). Forty children with ALL [median age 11 (8.5-15.4) years] and 42 healthy children [median age 11 (8.9- 15) years] served as controls. Treadmill exercise results from 22 of the 38 patients were included in the analysis. TX children showed significantly higher levels of mental health problems and lower HRQOL at 2 to 16 years after transplantation compared to both control groups. Body mass index and maximal oxygen uptake (n = 22/38) were significant predictors of child mental health (SDQ) and child QOL (PedsQL), respectively. Based on these results, we suggest that rehabilitation after TX should include a focus on physical activity and QOL to reduce interconnected physical and psychological morbidity in kidney TX children.

Professional collaboration - support for children with cancer and their families - focus group interview - a source of information and knowledge - professionals' perspectives.

In this study, our aims were to evaluate a professional collaborative model and to explore professionals' perceptions of collaboration generally. Focus group interviews were performed with 18 health and non-health professionals caring for children diagnosed and treated for cancer. Collaboration was considered significant for professionals themselves and the families they work with. Focus group participants support the importance of arranging collaborative meetings at an early stage of the child's illness and the family's crisis. Many professionals, working in the child's home community, were alone with the responsibility for follow-up care, but only a few of these professionals received supervision. More frequent contact with the paediatric clinic was desired, as well as a more active role for the general practitioner. Professionals perceived the model as being a valuable support system for longterm planning of follow-up care, allowing parents to collaborate with the care team. It is essential however, to emphasize the importance of having well-established routines, as well as the use of a coordinator. This can be important for enhancing communication between professionals and for obtaining a well-functioning collaboration.

Cognitive outcome in children and adolescents treated for acute lymphoblastic leukaemia with chemotherapy only.

OBJECTIVE: To examine cognitive outcome in children and adolescents with acute lymphoblastic leukaemia (ALL) in remission, treated with central nervous system prophylactic chemotherapy only. METHOD: Thirty-five children and adolescents, age 8.4-15.3 years in long-term remission from ALL, 4.2-12.4 years post diagnosis, without relapse and no pre-diagnosis history of neurodevelopmental disorder were compared with 35 healthy controls matched for gender and age, on measures of intellectual functioning Wechsler Intelligence Scale for Children-Third Edition (WISC-III). RESULTS: All but two of the ALL survivors treated by chemotherapy only obtained WISC-III Total Intelligence Quotient (IQ) scores in the normal range (M = 95.3), but their scores were significantly below levels for their matched controls and below normative standards for WISC-III. The difference between patients and controls was significant at the p < 0.001 level for the following measures: Total IQ, Verbal IQ, Verbal Comprehension Index, Freedom from Distraction Index and three verbal subtest scores. CONCLUSION: The results indicate long-term sequelae in global cognitive functions, and indicate that verbal function, processing speed, attention and complex visual-spatial problem solving may be affected in the chemotherapy only group.