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The relationship between fatigue and cognition has not been fully elucidated in children and adolescent survivors of brain tumours. The aim of the present study was to investigate the potential relationship between fatigue and cognitive impairments in these survivors, as this group is at risk for both types of deficits. Survivors of paediatric brain tumours (n = 45) underwent a neuropsychological testing on average 4 years after diagnosis. Mean age at follow-up was 13.41 years. Cognition was assessed with neuropsychological tests, and fatigue with the Pediatric Quality of Life (PedsQL™) Multidimensional Fatigue Scale. Regression analysis, adjusted for cranial radiotherapy and age at diagnosis, was used to investigate the associations between cognitive variables and fatigue subscales. Cognitive variables associated with fatigue were subsequently exploratively assessed. Significant associations were found for cognitive fatigue and measures of cognitive processing speed; Coding: p = .003, r = .583, 95% CI [9.61; 22.83] and Symbol Search: p = .001, r = .585, 95% CI [10.54; 24.87]. Slower processing speed was associated with poorer results for cognitive fatigue. Survivors with the largest decrease in processing speed from baseline to follow-up also experienced the most cognitive fatigue. Survivors expressed more cognitive fatigue compared to other types of fatigue. The association between cognitive fatigue and cognitive processing speed in children and adolescents treated for brain tumours is in concordance with the results previously reported in adults. Some survivors experience fatigue without impairment in processing speed, indicating the need for comprehensive assessments. Moreover, the study supports that fatigue is a multidimensional concept which should be measured accordingly.

This study describes patterns of self-management ease and difficulty among older adults with long-term health conditions and the associations with gender, level of education, number of conditions, depression and/or health status. Cross-sectional data were collected between 2021-2022 in a municipality in northern Sweden. The survey included demographic and health-related questions. To assess self-management ease or difficulty and symptoms of depression, the Patient Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) and the Geriatric Depression Scale were used. 516 older adults between 72-73 years of age with long-term health conditions were included. Descriptive statistics and logistic regression were used to describe patterns of self-management ease and difficulty and to examine which factors were associated with self-management difficulty. Most older adults did not experience self-management difficulty. There were, however, differences between the seven PRISM-CC domains. The Internal domain (managing negative emotions and stress) had the highest percentage (25.39%) of older adults with self-management difficulty. In all domains, there was also a subgroup of individuals (  = 26) that had noticeably lower PRISM-CC scores (more difficulty). A strong association between having depressive symptoms or having poor health status and self-management difficulty was found. This study highlights the need for regular mental health screenings and individualized self-management support for older adults. Future research should explore intervention strategies that integrate mental health support into self-management programs for individuals with long-term health conditions.

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.

PurposeTo examine prevalence and predictors of neurocognitive outcomes, social attainment, emotional distress, and health-related quality of life (HRQOL) in long-term survivors of pediatric Wilms tumor (WT).MethodsOne hundred fifty-eight WT survivors (59% female; mean [SD] age 33 [9.1] years; time since diagnosis 29 [9.1] years) and 354 community controls (55.6% female; 35 [10.2] years) completed comprehensive neuropsychological testing and physical examination, including echocardiography/electrocardiography, pulmonary function tests, and endocrine evaluation. Self-report of emotional distress, HRQOL, and social attainment were collected. Impairment was defined in relation to both controls and normative data. Generalized linear models were developed to examine impact of treatment and chronic health conditions on outcomes.ResultsWT survivors performed poorer than norms and controls in 6 of 16 cognitive variables and 1 of 8 HRQOL variables, with scores ranging from − 0.64 (mathematics) to − 0.21 (verbal fluency) standard deviations below expectations. Compared to controls, WT survivors were less likely to graduate college (odds ratio 2.23, 95% confidence interval 1.46–3.41) and had more moderate to severe neurologic conditions (18.4% vs 8.2%, p < 0.001), which were associated with poor memory (β = − 0.90, p < 0.001), attention (β = − 1.02, p < 0.001), and HRQOL general health (β = − 0.80, p = 0.0015). Treatment variables and cardiopulmonary morbidity (higher in survivors) were not associated with outcomes.ConclusionsSurvivors of WT demonstrate impairment in neurocognitive function and have lower social attainment during adulthood, with poorer neurocognitive function associated with neurologic morbidity.Implications for Cancer SurvivorsSurvivors of WT should be offered neurocognitive evaluations and rehabilitation. Neurologic conditions should be routinely assessed, and appropriate support offered to reduce risk for functional limitations.

In the present study, a didactic perspective was used to examine collaborations and negotiations between preschools and habilitation centres concerning intensive behavioural interventions for children with autism spectrum disorders in inclusive settings in Swedish preschools. The didactic triangle was used as the theoretical tool to analyse information derived from a qualitative case-study in two preschools exemplifying 'high quality practice'. Direct content analysis was used to analyse data with a focus on the child, the pedagogue, and the subject. Data were collected through multiple sources during a 12-month period, including observations and interviews. A model of aspects of the collaboration between preschools, habilitation centres, and families was conceptualized based on the didactic triangle: the 'pedagogue cornerstone' encompassed competence, attitudes, and collaborations; the 'child cornerstone' encompassed learning in relation to specific goals; the 'subject cornerstone' encompassed both subjects shared with typically developing peers and subjects related to the specific challenges. In addition, the preschool principals were described as important. Different factors in relation to tensions and collaborations between organizations concerning inclusive education were elaborated. Implications for preschools, inter-organizational collaboration, and future research are discussed.

The aim of the study was to explore the associations between the presence of avoidant personality problems (APPs) and 5 areas of impairment: demography, somatic issues, mental health, lifestyle, and social issues. Avoidant personality problem was defined by confirmation of the 2 avoidant personality disorder items of the Iowa Personality Disorder Screen and and the Social Phobia Inventory (SPIN) short version (MINI-SPIN) screening assessment for generalized social anxiety disorder sum score of 6 or more. The questionnaires were administered in a Norwegian population survey (the Oslo Health Study-HUBRO). Cases consisted of 280 individuals with APP and 5 randomly selected controls without APP (n = 1400). The APP group more frequently reported living alone, lower level of education, and lower income than controls. Poor self-rated health, presence of somatic disease, muscular pain, frequent use of analgesics, and visits at a general practitioner were significantly more common in the APP group than among controls. The APP group had significantly higher proportion of caseness of mental distress, low general self-efficacy, and insomnia, and this result held up in multivariate analyses. The APP group showed statistically significant higher proportions of physical inactivity, obesity, daily smoking, and alcohol problems compared with controls. As for social impairment, a significantly higher proportion of the APP group reported “not having enough good friends,” “high powerlessness,” and low community activism, and the 2 former variables held up in multivariate analyses. In this population-based study, we found that high levels of APP, defined closely to avoidant personality disorder, were significantly associated with demographic, somatic, and mental impairment; low general self-efficacy; and insomnia affecting work ability. In addition, APP showed associations with negative lifestyle, alcohol problems, and social impairment reporting lack of good friends and lack of empowerment. Avoidant personality problem is associated with clinically significant impairment in several areas, which underlines the importance of recognizing these problems in primary health care.

Abstract Background In noncancer populations, insomnia is known to affect neurocognitive processes. Although the prevalence of insomnia appears to be elevated in survivors of childhood cancer, relatively little is known about its association with neurocognitive performance in this at-risk population. Methods A total of 911 survivors (51.9% female; mean [SD] age, 34 [9.0] years; time since diagnosis, 26 [9.1] years) completed direct assessments of attention, memory, processing speed, and executive functioning and self-reported symptoms of sleep (Pittsburgh Sleep Quality Index), fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue), and daytime sleepiness (Epworth Sleepiness Scale). Sex-stratified general linear models were used to examine associations between insomnia and neurocognitive performance, with adjustment for treatment exposures and chronic health conditions. All statistical tests were two-sided. Results Insomnia was reported by 22.1% of females and 12.3% of males (P < .001). After adjustment for neurotoxic treatment exposures, insomnia (vs healthy sleepers with no daytime fatigue or sleepiness) was associated with worse neurocognitive performance in the domains of verbal reasoning, memory, attention, executive function, and processing speed (verbal reasoning: males β = −0.34, P = .04, females β = −0.57, P < .001; long-term memory: males β = −0.60, P < .001, females β = −0.36, P = .02; sustained attention: males β = −0.85, P < .001, females β = −0.42, P = .006; cognitive flexibility: males β = −0.70, P = .002, females β = −0.40, P = .02). Self-reported sleep disturbance without daytime fatigue or sleepiness or daytime fatigue or sleepiness alone were not consistently associated with poorer neurocognitive performance. Conclusions Insomnia was highly prevalent and contributed to the neurocognitive burden experienced by adult survivors of childhood cancer. Treatment of insomnia may improve neurocognitive problems in survivors.

Background Self-management is internationally recognized as important to maintain independence, quality of life and to minimize the risk of poor health outcomes, especially among persons with multi-morbidity. Self-management can be especially challenging for older adults, who have higher rates of multi-morbidity and experience diverse impacts of long-term health conditions on everyday life. Good measures of self-management are currently lacking. The Patient Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) is a new, generic, multidimensional measure of self-perceived ease or difficulty with self-management, that overcomes many of the limitations of existing measures. Objectives To test the structural validity and test-retest reliability of the Swedish version of the PRISM-CC among seventy-year-olds with long-term health conditions. Methods Translation of PRISM-CC items into Swedish followed the Patient-Reported Outcome (PRO) Consortium process. Survey data (n = 516 Swedish seventy-year-olds with ≥1 long-term health condition) was used to assess structural validity of the 36-item PRISM-CC using multidimensional item response theory (IRT) models. Test-retest reliability was assessed on a subsample of 58 individuals using intra-class correlation coefficient (ICC) and Bland-Altman Plots. Results The Swedish PRISM-CC demonstrated good internal consistency with Cronbach’s alpha >0.8 for all domains, and good fit to a graded response IRT model (RMSEA 0.034, SRMSR 0.050, CFI 0.952 and TLI 0.945). All 36 items had standardized loadings >0.7. ICC showed moderate to good test-retest reliability for all seven domains. The Bland-Altman plots showed minimal bias and good test-retest agreement for all domains. Conclusion The Swedish PRISM-CC showed good structural validity and test-retest reliability in this sample of relatively healthy seventy-year-olds with long-term health condition(s). Further validation in a population with more severe health issues is needed.

The advent of CRISPR-Cas9 in 2012 started revolutionizing the field of genetics by broadening the access to a method for precise modification of the human genome. It also brought renewed attention to the ethical issues of genetic modification and the societal acceptance of technology for this purpose. So far, many surveys assessing public attitudes toward genetic modification have been conducted worldwide. Here, we present the results of a systematic review of primary publications of surveys addressing public attitudes toward genetic modification as well as the awareness and knowledge about the technology required for genetic modification. A total of 53 primary publications (1987–2020) focusing on applications in humans and non-human animals were identified, covering countries in four continents. Of the 53 studies, 30 studies from until and including 2012 (pre-CRISPR) address gene therapy in humans and genetic modification of animals for food production and biomedical research. The remaining 23 studies from after 2013 (CRISPR) address gene editing in humans and animals. Across countries, respondents see gene therapy for disease treatment or prevention in humans as desirable and highly acceptable, whereas enhancement is generally met with opposition. When the study distinguishes between somatic and germline applications, somatic gene editing is generally accepted, whereas germline applications are met with ambivalence. The purpose of the application is also important for assessing attitudes toward genetically modified animals: modification in food production is much less accepted than for biomedical application in pre-CRISPR studies. A relationship between knowledge/awareness and attitude toward genetic modification is often present. A critical appraisal of methodology quality in the primary publications with regards to sampling and questionnaire design, development, and administration shows that there is considerable scope for improvement in the reporting of methodological detail. Lack of information is more common in earlier studies, which probably reflects the changing practice in the field.

Background Central nervous system tumours constitute 25% of all childhood cancers; more than half are located in the posterior fossa and surgery is usually part of therapy. One of the most disabling late effects of posterior fossa tumour surgery is the cerebellar mutism syndrome (CMS) which has been reported in up to 39% of the patients but the exact incidence is uncertain since milder cases may be unrecognized. Recovery is usually incomplete. Reported risk factors are tumour type, midline location and brainstem involvement, but the exact aetiology, surgical and other risk factors, the clinical course and strategies for prevention and treatment are yet to be determined. Methods This observational, prospective, multicentre study will include 500 children with posterior fossa tumours. It opened late 2014 with participation from 20 Nordic and Baltic centres. From 2016, five British centres and four Dutch centres will join with a total annual accrual of 130 patients. Three other major European centres are invited to join from 2016/17. Follow-up will run for 12 months after inclusion of the last patient. All patients are treated according to local practice. Clinical data are collected through standardized online registration at pre-determined time points pre- and postoperatively. Neurological status and speech functions are examined pre-operatively and postoperatively at 1–4 weeks, 2 and 12 months. Pre- and postoperative speech samples are recorded and analysed. Imaging will be reviewed centrally. Pathology is classified according to the 2007 WHO system. Germline DNA will be collected from all patients for associations between CMS characteristics and host genome variants including pathway profiles. Discussion Through prospective and detailed collection of information on 1) differences in incidence and clinical course of CMS for different patient and tumour characteristics, 2) standardized surgical data and their association with CMS, 3) diversities and results of other therapeutic interventions, and 4) the role of host genome variants, we aim to achieve a better understanding of risk factors for and the clinical course of CMS - with the ultimate goal of defining strategies for prevention and treatment of this severely disabling condition. Trial registration Clinicaltrials.gov : NCT02300766 , date of registration: November 21, 2014.