| 1. |
- Bakker, Anne, et al.
(författare)
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A systematic review of health-related quality of life in children and adolescents during treatment for cancer
- 2023
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Ingår i: EJC Paediatric Oncology. - 2772-610X. ; 2
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Forskningsöversikt (refereegranskat)abstract
- Health-related quality of life (HRQL) is a multidimensional concept which captures the individual’s perception of treatment burden. Evaluating HRQL during treatment for childhood cancer provides insight into the burden of the treatment from the child’s and/or parent’s perspective.In this review, we aimed to describe Patient-Reported Outcome Measures (PROMs) used to measure HRQL during treatment, describe how HRQL of paediatric oncology patients differs from the healthy norms, and describe biopsychosocial variables that are related to HRQL during treatment.We conducted a systematic review of HRQL of childhood cancer patients on treatment, according to PRISMA guidelines. We searched PubMed, EMBASE, PsycINFO and CINAHL, and after full-text review we included 85 papers (84 studies) with 7311 participants.These studies were conducted in 30 different countries and utilised 23 different PROMs. The most commonly used PROM was Pediatric Quality of Life generic core scales. While many different PROMs were used in the included studies, none of them covered all aspects of HRQL.We identified a lack of research regarding the effects of immuno- and CAR-T therapy and coping strategies of the child and/or the parents on HRQL, as well as a knowledge gap regarding HRQL in children below 2 years of age.All studies reported lower HRQL outcomes for patients in comparison to healthy children of siblings. Overall, children on treatment compared to off treatment reported lower HRQL. Described from a biopsychosocial perspective, we found inconsistent associations between other variables and HRQL outcomes. This can be explained by different studies classifying different groups differently.To be able to compare HRQL outcomes of childhood cancer patients internationally we recommend the use of a paediatric cancer PROM core set.
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| 2. |
- Irestorm, Elin, et al.
(författare)
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Auditory hypersensitivity and attention in survivors of paediatric brain tumours
- 2020
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Konferensbidrag (refereegranskat)abstract
- Objective: Both auditory and visual hypersensitivity are clinical features of mental fatigue after acquired brain damage or in neurological disorders. Both types of hypersensitivity are also associated with attention deficits, especially in neurodevelopmental syndromes. The aim of this study was to examine auditory and visual hypersensitivity, and associations to attention, in a group of children and adolescents treated for paediatric brain tumours (PBTs).Participants and Methods: Included in the study were 34 survivors of PBTs, 8–18 years of age (M: 13.6, SD: 3.0). Eighteen participants were female and 16 were male. Mean time since diagnosis was 4.2 years (SD: 2.2). Auditory and visual hypersensitivity were assessed using two items from the questionnaire Mental Fatigue Scale (MFS), scored on a 7-point Likert scale from 0 – 3. Scores above 1 indicate hypersensitivity. Attention was assessed using Conners Continuous Performance Test 3 (detectability, commissions, variability), and T-scores above 60 were considered impaired. Spearman correlations were conducted between the performance-based and self-report measures.Results: Results from the MFS revealed that 53% of the survivors experienced auditory and 18% visual hypersensitivity as a sequela. Regarding attention, elevated scores were more common for detectability (18%) and variability (21%) than commissions (8%). Visual hypersensitivity was not significantly associated with any of the attention measures, whereas auditory hypersensitivity was significantly associated with detectability (r=.42, p=0.013) and variability (r=.57, p<0.001).Conclusions: These results suggest that auditory hypersensitivity is common after treatment for PBT, and that it is associated with decreased attention. This relationship should be taken into consideration when assessing survivors of PBTs.
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| 3. |
- Irestorm, Elin, et al.
(författare)
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Cognitive Fatigue and Processing Speed in Children Treated for Brain Tumours
- 2021
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Ingår i: Journal of the International Neuropsychological Society. - 1355-6177. ; 27:9, s. 865-874
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Tidskriftsartikel (refereegranskat)abstract
- Objective: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.Methods: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.Results: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.Conclusions: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.
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| 4. |
- Irestorm, Elin, et al.
(författare)
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Cognitive fatigue in relation to depressive symptoms after treatment for childhood cancer
- 2020
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Ingår i: BMC Psychology. - : Springer Science and Business Media LLC. - 2050-7283. ; 8:1
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Tidskriftsartikel (refereegranskat)abstract
- 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, ηp2 = 0.178), followed by depression (p =.010, ηp2 = 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. © 2020 The Author(s).
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| 5. |
- Irestorm, Elin, et al.
(författare)
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Fatigue trajectories during pediatric ALL therapy are associated with fatigue after treatment: a national longitudinal cohort study
- 2023
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 1433-7339 .- 0941-4355. ; 31:1, s. 1-9
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Fatigue is one of the most prevalent and distressing symptoms reported by survivors of childhood cancer. There is currently a lack of longitudinal studies on cancer-related fatigue, and especially on the relationship between the course of fatigue during treatment and fatigue at follow-up. The purpose of the current study was therefore to investigate if the course of fatigue during treatment, treatment intensity, serious adverse events, sex, or age at diagnosis are associated with cancer-related fatigue after treatment.Methods: Participants were 92 children and adolescents diagnosed with acute lymphoblastic leukemia (mean age at diagnosis was 6.26 years). Fatigue was measured with PedsQL multidimensional fatigue scale proxy reports 5 months after diagnosis,12 months after diagnosis, 24 months after diagnosis, and at follow-up 12 months after end of treatment. The effect of patient and treatment characteristics on fatigue reported at follow-up was tested through logistic regression analyses.Results: The course of fatigue during treatment signifcantly predicted fatigue reported at follow-up for general fatigue (p=.038, OR=9.20), sleep/rest fatigue (p=.011, OR=15.48), and cognitive fatigue (pConclusions The fndings demonstrate that fatigue reported during treatment can predict fatigue at follow-up. These results stress the need for longitudinal assessments. Healthcare professionals need to be aware that pediatric patients who are fatigued during treatment need to receive additional attention and timely interventions since cancer-related fatigue will not resolve by itself in the frst year after end of treatment.
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| 6. |
- Irestorm, Elin, et al.
(författare)
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Longitudinal development of fatigue after treatment for childhood cancer : a national cohort study
- 2023
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Ingår i: Acta oncologica (Stockholm, Sweden). - 1651-226X. ; 62:10, s. 1309-1321
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Fatigue is a distressing and prevalent long-term sequela of treatment for childhood cancer, and there is a need for longitudinal studies to investigate the development of fatigue over time. The objective of this study was to calculate growth-curves for the longitudinal development of fatigue after treatment for childhood cancer, and to investigate the effects of biopsychosocial predictors.MATERIALS AND METHODS: Participants were recruited from a patient monitoring program and data extracted from medical records. Parent-proxy and self-report versions of PedsQL TM Multidimensional Fatigue Scale were used to repeatedly assess fatigue up to 5 years after the end of treatment for childhood cancer. Fatigue was assessed 2440 times for 761 participants (median:3) with proxy-reports (age 2-8 years) and 2657 times for 990 participants with self-reports (above 8 years) (median:2). Mixed models were used to establish growth-curves and to analyze the effect of predictors separately for participants with solid tumors (ST), hemato-oncological malignancies and central nervous system-tumors (CNS). RESULTS: CNS-tumors were associated with more cognitive fatigue than ST at the end of treatment, for both proxy-reports (-11.30, p<.001) and self-reports (-6.78, p=.002), and for proxy-reports of general fatigue (-6.78, p=.002). The only significant difference in change over time was for self-reports of sleep-rest fatigue. The raw scores for the CNS-group decreased with -0.87 per year (95% CI -1.64; -0.81, p=.031) compared to the ST-group. Parental distress was overall the variable most associated with increased fatigue, while immunotherapy was the most frequent medical predictor. National centralization of childhood cancer care decreased fatigue for the CNS-group, but not for other diagnoses. DISCUSSION: Children and adolescents treated for CNS-tumors reported more fatigue than other participants after the end of treatment, and this difference remained over time. Results from this study may help to facilitate the early recognition of children with insufficient recovery of fatigue symptoms.
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| 7. |
- Irestorm, Elin, et al.
(författare)
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Pretreatment Cognition in Patients Diagnosed With Pediatric Brain Tumors
- 2018
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Ingår i: Pediatric Neurology. - : Elsevier BV. - 0887-8994. ; 79, s. 28-33
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Tidskriftsartikel (refereegranskat)abstract
- Background: There is a large body of literature identifying risk factors for the long-term cognitive alterations found in survivors of pediatric brain tumors. Less is known about baseline cognitive functioning in this population, but studies suggest that cognitive dysfunctions are often present at the time of diagnosis. This study aimed to identify potential risk factors for lower cognitive function at the time of pediatric brain tumor diagnosis. Methods: Participants were children and adolescents (n = 101) diagnosed with a pediatric brain tumor between 2006 and 2015, who underwent a pretreatment neuropsychologic assessment. Multivariate regression models were used to estimate the association between gender, age at diagnosis, tumor size and location, increased intracranial pressure, epilepsy, and six different indicators of cognitive functioning. Results: Overall, cognitive performance was relatively intact, with results close to norm means, but impairments were found in memory and cognitive processing speed. Male gender, older age, epilepsy, increased intracranial pressure, and larger tumors were all associated with lower cognitive function at the time of brain tumor diagnosis; whereas tumor location was not. Conclusions: Pretreatment neuropsychologic assessments, with some adjustments, can be carried out with children and adolescents with brain tumors. Our study adds to a small but growing body of literature documenting cognitive impairments at the time of diagnosis; these impairments may partly explain the longer-term deficits that commonly occur in pediatric brain tumor survivors. Consistent with previous research, pretreatment impairments were more common among boys, older children, and those with increased intracranial pressure, epilepsy, and larger tumors. The relationship between baseline and longer-term cognitive deficits requires further examination.
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| 8. |
- Irestorm, Elin
(författare)
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Sad, shattered or slow? Fatigue after childhood cancer.
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Systematic assessments of cognition, fatigue, and mental health in survivors ofchildhood cancer can serve two different purposes. One is to enable research about development over time and medical predictors of cognitive deficits. The other is to identify individual patients in need of rehabilitation or interventions. The overall aim of this doctoral thesis was to contribute to the ongoing development of systematic neuropsychological follow-up protocols for survivors of childhood cancer. The included studies investigated whether cognitive deficits were present already at diagnosis in children with brain tumours, the overlap between cognitive fatigue and symptoms of depression, and the association between fatigue and cognitive impairment.The results showed that a pre-treatment assessment was feasible for the majority of cases, and that some aspects of cognition were affected already at baseline. Assessment of fatigue at follow-up revealed that cognitive fatigue was the fatigue domain most affected in survivors, but also that survivors of brain tumours suffered more from fatigue than survivors of acute lymphoblastic leukaemia. The results also indicated that cognitive fatigue should not be assessed on its own, but that depressive symptoms and cognitive processing speed should be considered as well. A decrease in cognitive processing speed from the pre-treatment assessment to the follow-up was also associated with experiencing more cognitive fatigue.Overall, the results suggest that additional studies are warranted to further examine the relationship between baseline and long-term cognitive deficits. Regarding fatigue, more research is needed concerning the development over time, to see if it decreases or if there instead is a risk of increasing symptoms. Future studies should also focus on finding medical predictors and developing a biopsychosocial model of fatigue in survivors of childhood cancer.
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| 9. |
- Irestorm, Elin
(författare)
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Sömnstörningar vanliga efter behandling för hjärntumör som barn
- 2023
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Ingår i: Sömn och hälsa. - 2003-2501. ; :10, s. 26-29
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Tidskriftsartikel (populärvet., debatt m.m.)abstract
- Hjärntumörer är en av de vanligaste barncancerdiagnoserna och många som överlever drabbas av sömnstörningar efteråt. Tumörens läge i hjärnan, tillsammans med vilken behandling man får, påverkar hur stor risken är. Det finns dock även andra faktorer som påverkar, och övervikt hos barnet är den enskilt största riskfaktorn för sömnsvårigheter.
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| 10. |
- Irestorm, Elin, et al.
(författare)
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The development of fatigue after treatment for pediatric brain tumors does not differ between tumor locations
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Ingår i: Pediatric Blood & Cancer. - 1545-5017. ; , s. 1-9
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundChildren and adolescents treated for a brain tumor suffer from more fatigue than survivors of other types of childhood cancer. As tumor location might be predictive of fatigue, our aim was to investigate the longitudinal development of fatigue in children with brain tumors and risk factors for fatigue separately for different tumor locations.MethodsFatigue was assessed 1235 times for 425 participants. Self-report versions of PedsQL Multidimensional Fatigue Scale were used to repeatedly assess fatigue from the end of treatment up to 8 years later. Mixed models were used to analyze fatigue over time and determinants separately for infratentorial (N = 205), supratentorial hemispheric (N = 91), and supratentorial midline tumors (N = 129).ResultsCognitive fatigue worsened with time, while sleep-rest and general fatigue first decreased and then increased. There was no difference in fatigue between the tumor locations, but the risk factors differed when stratified by location. Radiotherapy was associated with more fatigue for infratentorial tumors, and centralization of care was associated with less fatigue for the supratentorial midline tumors. For supratentorial hemispheric tumors, female sex was associated with more fatigue. Higher parental education was associated with less fatigue regardless of tumor location.ConclusionsThe development of fatigue seems to be more related to sociodemographic and treatment variables than to tumor location. Healthcare providers need to be aware that fatigue may develop in the years following end of treatment, and that patients with a low/middle educational family background might be more vulnerable and in need of targeted support.
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