Multidimensional Fatigue Scale Research Articles

Sleep quality and physical fitness as modifiable contributors of fatigue in childhood cancer survivors.

Advances in cancer treatment have increased childhood cancer patient's survival rates. However, many childhood cancer survivors (CCS) face long-term effects such as fatigue. This study assessed fatigue in CCS and healthy controls (HCs), its contributors, and associated outcomes. This cross-sectional study included 90 CCS and 55 age and sex-matched HCs. Fatigue was measured using the Pediatric Quality of Life Multidimensional Fatigue Scale, and modifiable contributors included sleep quality (Pittsburgh Sleep Quality Index [PSQI]) and physical fitness (VO2 peak during a treadmill test). Quality of life (QoL) and emotional and cognitive functioning were evaluated using the Pediatric Quality of Life Inventory, Beck Depression Inventory II, Cognitive Failure Questionnaire, and the Impact of Event Scale-Revised. Stepwise linear regressions identified predictors of general, sleep/rest, cognitive, and total fatigue. General, cognitive, and total fatigue were significantly higher in CCS compared to HCs (44.7% vs. 23%, p < .001; cognitive: 64.7% vs. 29.3%, p < .001; total fatigue: 56.5% vs. 25%, p < .001). Sex, PSQI, PSQI × sex, and PSQI × VO₂ were significant predictors for general fatigue, PSQI and PSQI × VO₂ for cognitive fatigue, and PSQI for sleep/rest and total fatigue. Cognitive and total fatigue correlated most strongly with cognitive and work-related functioning, whereas general and sleep/rest fatigue were more related to psychosocial functioning. Fatigue is highly prevalent among CCS, with distinct factors influencing general, sleep/rest, cognitive, and total fatigue. Female survivors, those with poorer sleep quality and lower physical fitness, are at risk. This study underscores the need for tailored interventions for each type of fatigue. Improving sleep quality, physical fitness, and psychological well-being may contribute to reducing fatigue and enhancing overall quality of life in CCS.

Research progress on assessment tools related to occupational fatigue in nurses: a traditional review.

Nurse occupational fatigue is a significant factor affecting nursing quality and medical safety. Scientific and effective assessment of occupational fatigue is beneficial for strengthening nurse occupational health management, improving the quality of life for nurses, and ensuring patient safety. This article provides a narrative review of the content, reliability, validity, characteristics, application status, and advantages and disadvantages of assessment tools related to nurse occupational fatigue. These tools include single-dimensional assessment scales (Fatigue Severity Scale, Chinese version of Li Fatigue Scale), multidimensional assessment scales (Fatigue Scale-14, Fatigue Assessment Scale, Multidimensional Fatigue Scale, etc.), and other assessment tools. Our review reveals limitations in existing occupational fatigue assessment tools, such as variability in accuracy and applicability across different populations, and potential biases. These findings underscore the critical role of these tools in nursing management and occupational health, advocating for continuous refinement and innovation. Future research should focus on developing more comprehensive, context-specific tools to address the multifaceted nature of nurse occupational fatigue. Nursing managers must carefully select appropriate tools to effectively identify and mitigate fatigue, thereby enhancing nurse well-being and patient care quality.

Neuropsychological awareness in pediatrics (NAP): Proposal of a new cognitive self-report questionnaire for pediatric multiple sclerosis patients.

Self-perception of cognitive functioning in pediatric MS (pedMS) needs to be evaluated with specific questionnaires, currently lacking. This study aimed to develop a self-reportwhich investigates cognitive status in pedMS. Twenty-seven pedMS patients (mean age±standard deviation=15 years±1.5 year; female/male=2:1) and their parents, completed a questionnaire called "Neuropsychological Awareness in Pediatrics - Patient, and Neuropsychological Awareness in Pediatrics - Caregiver" (NAP-P and NAP-C, respectively). Patients underwent a comprehensive neuropsychological assessment and completed self-reports on quality of life (Pediatric Quality of Life Inventory, Peds-QL), fatigue (Multidimensional Fatigue Scale, Peds-QL MFS), and mood disturbances (Children Depression Inventory, CDI-II). Significant positive correlations were observed between NAP-P and the Trial Making Test-B (ρ = 0.470, p ˂ 0.05). Both NAP-P and NAP-C correlated with CDI-II (ρ = 0.776, p < 0.001; ρ = 0.577, p < 0.01, respectively), and NAP-C correlated with disease duration (ρ = 0.472, p < 0.05). Our pilot study suggests that NAP is a promising tool for a more comprehensive evaluation of cognitive functioning in pedMS, and is worthy of further investigation.

Hypothalamus Connectivity in Adolescent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Adolescent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling illness of unknown etiology. Increasing evidence suggests hypothalamic involvement in ME/CFS pathophysiology, which has rarely been explored using magnetic resonance imaging (MRI)in the condition. This work aimed to use MRI to examine hypothalamus connectivity in adolescents with ME/CFS and explore how this relates to fatigue severity and illness duration. 25 adolescents with ME/CFS and 23 healthy controls completed a neuroimaging protocol consisting of structural and multishell diffusion-weighted imaging sequences, in addition to the PedsQL Multidimensional Fatigue Scale to assess fatigue severity. Information about illness duration was acquired at diagnosis. Preprocessing and streamlines tractography was performed using QSIPrep combined with a custom parcellation scheme to create structural networks. The number (degree) and weight (strength) of connections between lateralized hypothalamus regions and cortical and subcortical nodes were extracted, and relationships between connectivity measures, fatigue severity, and illness duration were performed using Bayesian regression models. We observed weak-to-moderate evidence of increased degree, but not strength, of connections from the bilateral anterior-inferior (left: pd [%] = 99.18, median [95% CI] = -22.68[-40.96 to 4.45]; right: pd [%] = 99.86, median [95% CI] = -23.35[-38.47 to 8.20]), left anterior-superior (pd [%] = 99.33, median [95% CI] = -18.83[-33.45 to 4.07]) and total left hypothalamus (pd [%] = 99.44, median [95% CI] = -47.18[-83.74 to 11.03]) in the ME/CFS group compared with controls. Conversely, bilateral posterior hypothalamus degree decreased with increasing ME/CFS illness duration (left: pd [%] = 98.13, median [95% CI]: -0.47[-0.89 to 0.03]; right: pd [%] = 98.50, median [95% CI]:-0.43[-0.82 to 0.05]). Finally, a weak relationship between right intermediate hypothalamus connectivity strength and fatigue severity was identified in the ME/CFS group (pd [%] = 99.35, median [95% CI] = -0.28[-0.51 to 0.06]), which was absent in controls. These findings suggest changes in hypothalamus connectivity may occur in adolescents with ME/CFS, warranting further investigation.

Rare bleeding disorders in girls and adolescent females with bleeding symptoms

Background Females with rare bleeding disorders who suffer from mild bleeding symptoms and extra bleeding symptoms related to menstruation are usually delayed in their diagnosis, necessitating early evaluation for an underlying bleeding diathesis based on clinical suspicion. Objectives We aimed to assess the frequency of rare bleeding disorders among female children and adolescents presenting with bleeding symptoms and to evaluate their health-related quality of life. Patients and methods Sixty females with bleeding symptoms younger than 18 years old were recruited and were subjected to detailed medical assessment and evaluation of different bleeding symptoms using the ISTH-BAT, the menstrual pictogram for assessing menstrual blood loss in pubertal females, and the Arabic version of the pediatric quality of life multidimensional fatigue scale. Laboratory investigations are tailored according to the institutional guidelines. Results The median age of the studied population was 8.25 years and 48.3% had a positive family history of bleeding. The mean age of presentation/diagnosis of Von Willebrand disease and Glanzmann disease were 6.1/8.2 and 5.3/7.6 years, respectively. Forty-five females had inherited bleeding disorders, and 15 had acquired ones. The most common diagnosis was Von Willebrand disease (30%), followed by Glanzmann disease (18.3%). The most common acquired disorder was aplastic anemia (13.3%). There was a higher ISTH-BAT total score in those with inherited disorders than in those with acquired disorders (P=0.006). Conclusion Adolescent females who present to a tertiary pediatric or gynecology service with bleeding manifestations should be screened for underlying bleeding disorders.

Fatigue in severe pediatric asthma patients: Results of the PANDA study.

Fatigue is a commonly reported clinical symptom, yet research on fatigue in children with severe asthma is missing. We aimed to explore the extent of fatigue in severe pediatric asthma and identify associated factors. This study was conducted within the Pediatric Asthma Non-Invasive Diagnostic Approaches (PANDA), an observational cohort of 6- to 17-year-old Dutch children with severe asthma. The Pediatric Quality of Life Inventory Multidimensional Fatigue Scale (PedsQL™-MFS) was used to measure self-reported fatigue. Fatigue levels were compared with a general pediatric Dutch population using linear regression, and quantifying the prevalence of "fatigued" (-2 < Standard deviations [SD] ≤ -1) and "severely fatigued" (SD ≤ -2) children. Secondly, we performed linear regression analyses to explore whether fatigue levels were independently associated with asthma attacks, comorbidities, medication, pulmonary function, symptom control, and asthma-related quality of life (QoL). Severe pediatric asthma patients (n = 78, mean age 11.8 ± 3.1 years) reported significantly more fatigue than Dutch peers (n = 328, mean age 11.8 ± 3.2 years) mean difference in z-score: -0.68; 95%CI -0.96, -0.40. In the severe asthma group, 28.2% scored as "fatigued" and 15.4% as "severely fatigued," compared with 14.0% and 3.4% in the general population. In pediatric asthma patients, asthma-related QoL (β = 0.77, p < .01, ΔR2 = .43), symptom control (β = 0.56, p < .01, ΔR2 = .24) and a dysfunctional breathing pattern (β = -0.36, p < .01, ΔR2 = .12) were most strongly associated with fatigue scores. Fatigue is a common symptom in children with severe asthma and is associated with multiple clinical factors and patient-reported outcomes. It should be considered as an important treatment target.

Correlation between Fatigue and Quality of Life in Adolescent Oncology Patients in Jordan

Background Adolescence represents a distinct and multifaceted developmental stage characterized by profound physical and cognitive transformations. Adolescents undergoing cancer treatment frequently have unique needs that remain unmet, leading to a notable decline in their quality of life. Cancer treatment often results in problems like fatigue, which affects patients' quality of life. Assessing quality of life and fatigue among adolescent cancer patients is essential for enhancing nursing care and improving outcomes. Objective This study aimed to investigate the correlation between fatigue and quality of life among adolescent cancer patients in Jordan. Methods A “cross-sectional” study was performed, with the participation of 127 Jordanian adolescent cancer patients, and data was collected through a nameless online survey of Jordanian adolescent cancer patients. The study commenced in February 2024 and concluded in June 2024. Demographic data and responses from two self-reported questionnaires—the Arabic versions of “Pediatric Quality of Life Inventory” “Multidimensional Fatigue Scale” and “Generic Core 4.0”—were collected. Descriptive statistics of means, frequencies, standard deviations, and percentages were used with demographics while inferential statistics were conducted using independent t-tests, Spearman's rank correlation coefficients, and Kruskal-Wallis tests in SPSS, version 26. Results Significant and potent correlations were found between various types of fatigue “general, sleep/rest, cognitive, and total” and quality of life “physical, emotional, social, school, psychosocial health”. Notably, the total fatigue scores showed a potent correlation with the total summary scores (r=0.946), with a p-value significant at the &lt;0.001 level for all correlations, indicating that adolescents with cancer experienced high fatigue and low quality of life. Conclusion The study demonstrated a potent link between fatigue and quality of life. The study's outcomes can help enhance guidelines for routine evaluation of fatigue and quality of life by nurses and healthcare providers in adolescent cancer patients to implement and evaluate interventions aimed at reducing fatigue in patients, highlighting fatigue as a significant concern. Future research should explore interventions such as exercise, leisure activities, and sleep to alleviate fatigue. Longitudinal research is essential to assess fatigue at diverse times of the day and week; this could help develop tailored fatigue management strategies to augment the quality of life among adolescent oncology patients.

Respiratory functions, respiratory muscle strength and fatigue in patients with pediatric-onset multiple sclerosis: a comparative cross-sectional study.

To compare PwPOMS and healthy controls in terms of respiratory functions, respiratory muscle strength, and fatigue, and investigate the determining role of fatigue on respiratory parameters. Twenty-five PwPOMS and 15 healthy controls were included in the study. Maximum inspiratory pressure (MIP) and expiratory pressures (MEP) were measured. Respiratory functions were evaluated using spirometry, and predicted values were recorded for FEV1, FVC, FEV1/FVC, and PEF. Fatigue levels were assessed using the Pediatric Quality of Life Inventory Multidimensional Fatigue Scale (PedsQL-MFS). The FEV1%pred (p = 0.022), PEF%pred (p = 0.003), MIP (p = 0.001), and MEP (p = 0.019), cognitive fatigue self-reported score of PedsQL-MFS (p = 0.037), sleep-rest fatigue (p = 0.034), cognitive fatigue (p = 0.010), and total score (p = 0.005) of PedsQL-MFS Proxy Report were significantly decreased in PwPOMS compared with their healthy peers. Regression analysis showed that the general fatigue of self-reported PedsQL-MFS was a determinator for FEV1%pred (β= -0.467) and PEF% (β= -0.553), and total score PedsQL-MFS was a determinator for FEV1/FVC %pred (β= -0.599). PwPOMS had decreased respiratory muscle strength, FEV1, and PEF, with preserved FEV1/FVC and higher fatigue levels than their healthy peers. In addition, self-reported fatigue had a determining role in respiratory functions but not respiratory muscle strength in PwPOMS. This trial is registered on ClinicalTrials.gov under "NCT05123924" available at: https://clinicaltrials.gov/ct2/show/NCT05123924 .

A randomized, double-blind, placebo-controlled study on immune improvement effects of ethanolic extract of Echinacea purpurea (L.) Moench in Korean adults.

Echinacea purpurea (L.) Moench (EP), a medicinal plant native to North America, is now cultivated in various regions including Europe. With increasing popularity of Echinacea in Korea recently, a human clinical trial was conducted to evaluate immune-enhancing efficacy and safety of EP 60% ethanolic extract (EPE) in Koreans. Eighty volunteers were recruited for this randomized, double-blind, placebo-controlled clinical trial. They were randomly divided into two groups and given either a daily dose of 200 mg of EPE or a placebo. All participants underwent testing for Natural Killer (NK) cell cytotoxic activity, serum cytokine levels (IL-2, IL-6, IL-10, IL-12, IFN-γ, TNF-α), Wisconsin Upper Respiratory Symptom Survey-21 (WURSS-21), and Multidimensional Fatigue Scale (MFS) during this study to assess changes in outcomes. After 8 weeks of EPE consumption, a significant increase in NK cell cytotoxic activity compared to the placebo was observed. Additionally, serum cytokine levels of IL-2, IFN-γ, and TNF-α also significantly increased following EPE consumption. However, no significant changes were observed in WURSS-21 and MFS before and after EPE consumption. Throughout the 8-week study period, no adverse reactions were reported in relation to EPE consumption, and there were no clinically significant changes in diagnostic laboratory tests or vital signs in the EPE group. These results indicate that consumption of EPE could lead to immune improvement without any adverse effects. This clinical trial was the first to demonstrate beneficial effects of EPE consumption on immunity in Korean adults.

Differences between Porn Addicts and Non-Addicts in Fatigue Symptoms and Body Image Distortion among University Students

This research aimed to identify differences between porn addicts and non-addicts in fatigue symptoms and body image distortion among university students, and to study the association of pornography use with fatigue symptoms and body image, and to identify the extent of the impact of some variables that include (age, marital status, gender, economic level) on level of pornography use. A cross-sectional web-based survey was designed and completed by 604 male and female students from Kuwait University, between January 13 and April 10, 2020. participants completed three self-reported scales. The scales included Body Image Scale (BIS), Multidimensional Fatigue Scale (MFS) and Pornography Addiction Questionnaire. The results reveal that Porn addicts suffer more from general, emotional, physical and behavioral fatigue and distorted body image compared to non-addicts. Body image distortion, general fatigue and physical fatigue were more closely related to pornography use among participants. These results also indicate that singles, males, high-income people and participants who aged less than 25 years had a higher level of pornography use compared the other groups.

QOL-05. MEMANTINE FOR PREVENTION OF COGNITIVE LATE EFFECTS IN CHILDREN RECEIVING CRANIAL RADIATION THERAPY FOR FOCAL BRAIN TUMORS: A PILOT STUDY

Abstract BACKGROUND Childhood brain tumor survivors treated with cranial irradiation are at significant risk for cognitive late effects that negatively impact quality of life. Memantine (an NMDA receptor antagonist), taken during radiotherapy for brain metastases in adults, resulted in reduced cognitive declines. This is the first investigation of feasibility, acceptability, and preliminary efficacy of memantine for reducing cognitive late effects in children undergoing radiation therapy. METHODS In a randomized, double-blind, controlled trial (MEMCRT; NCT03194906) children took memantine (20 mg/d) or placebo for 12 weeks. During the medication phase, participants received weekly phone calls to assess adherence using pill counts and monitor side effects using the SAFTEE structured interview. At baseline, 6 weeks (end of radiation therapy), and 12 weeks (end of medication), participants completed a brief battery of cognitive measures. RESULTS 30 patients (age at irradiation=11.93±2.87; 47% male) were included; memantine (n=16) and placebo (n=14) groups did not differ in age, sex, race, socioeconomic status or baseline IQ (ps&amp;gt;.26). Study participation (71% of those approached) and medication adherence (88% completed 12 weeks, with 97% of medication taken) were high. Side effects were minimal (only one CTCAE≥ 3; headache in the placebo group) with no difference between groups in change in side effect severity from baseline to any medication week, across any symptom inquiry (ps&amp;gt;.23). At 12 weeks, Cohen’s d effect sizes (ES) indicate the memantine group had better performance on measures of processing speed (Cogstate Identification ES=.61), academic fluency (Woodcock Johnson-IV Reading Fluency ES=.45; Math Fluency ES=.81), and fatigue (PedsQL Multidimensional Fatigue Scale ES=.72). CONCLUSIONS Study findings indicate memantine used as a neuroprotectant during radiation therapy for children with focal brain tumors is feasible and acceptable, with preliminary evidence for better cognitive outcomes that require validation in a larger, definitive trial.

ETMR-09. HEALTH-RELATED QUALITY OF LIFE OF CHILDREN, ADOLESCENTS AND ADULTS AFTER DIAGNOSIS OF CHILDHOOD-ONSET MENINGIOMA

Abstract BACKGROUND Meningiomas are rare intracranial tumors in childhood. Childhood-onset meningiomas differ from their adult counterparts in terms of frequency, molecular features and clinical presentation. There is limited data on health-related quality of life (HRQoL) of pediatric meningioma patients. The aim of this study was to analyze the HRQoL of pediatric or adult patients after completion of treatment for childhood-onset meningioma. Further, the influence of disease-specific characteristics on HRQoL, fatigue or functional capacity was analyzed. METHODS In this cross-sectional study, the HRQoL of 8 pediatric and 27 adult meningioma patients from the clinical trials HIT-ENDO, KRANIOPHARYNGEOM 2000/2007 and KRANIOPHARYNGEOM Registry 2019 was assessed. The validated questionnaires EQ-5D-Y, EQ-5D-3L, PedsQL Generic Core Scale, EORTC QLQ-C30 and QLQ-BN20 were used. Patients’ fatigue and functional capacity were scored using the EORTC QLQ-C30, the PedsQL Multidimensional Fatigue Scale and the FMH questionnaire. Exploratory data analysis was performed using univariate, bivariate and multivariate analyses (α=0.05). RESULTS The HRQoL was assessed in median 10 (IQR: 5-17) years after diagnosis. The mean HRQoL value was 86 (IQR: 79-92) for pediatric and 75 (IQR: 67-92) for adult patients using the PedsQL Generic Core Scale or EORTC QLQ-C30 questionnaire, respectively. Most limitations were reported in emotional function and fatigue. The median functional capacity of patients was at the 90th (IQR: 65-90) percentile. HRQoL was lower in adults with neurofibromatosis type 2 or at older age (p=0.009) and higher HRQoL after progressive disease. Age at diagnosis, WHO grade, residual tumor, use of radiotherapy, tumor location, tumor entity (meningioma vs. craniopharyngioma), degree of disability, or time since diagnosis did not affect HRQoL in adults. CONCLUSION The median HRQoL of childhood-onset meningioma patients indicates that it is comparable to the healthy normal population. Nevertheless, HRQoL is a construct that can be influenced in many ways. Further research on HRQoL is warranted.

Goal management training for improving fatigue in children and adolescents with acquired brain injuries: A 2-year follow-up of a randomised controlled trial

ABSTRACT To explore the long-term effectiveness of a paediatric adaptation of Goal Management Training (pGMT), relative to a psychoeducative program (pBHW), in reducing fatigue after pABI 2 years post-intervention. Thirty-eight youths and their parents completed the Paediatric Quality of Life – Multidimensional Fatigue Scale. Primary outcome measures were Total Fatigue Score, General fatigue, Cognitive fatigue, and Sleep/rest fatigue (parent-report). No significant differences in fatigue symptoms by the parental report was observed between the intervention groups at the 2-year follow-up (total score: F = .16, p = .69; general fatigue: F = .36, p = .55; sleep/rest: F = .48, p = .49; and cognitive fatigue: F = .09, p = .76), nor any time*group interactions (total score: F = .25, p = .86; general fatigue: F = .39, p = .76; sleep/rest: F = .20, p = .89; and cognitive fatigue: F = .08, p = .97). In total, 45% of the participants in the pGMT group and 25% in the pBHW group demonstrated a reliable positive clinical change. The significant improvements in fatigue symptoms that were demonstrated 6 months post-intervention could not be confirmed in this 2-year follow-up study. However, a continued positive tendency on most dimensions of fatigue for the participants in the pGMT group could be observed, suggesting that cognitive rehabilitation may help reduce fatigue.

Enzyme-Treated Zizania latifolia Ethanol Extract Improves Liver-Related Outcomes and Fatigability.

Long-term hepatic damage is associated with human morbidity and mortality owing to numerous pathogenic factors. A variety of studies have focused on improving liver health using natural products and herbal medicines. We aimed to investigate the effect of enzyme-treated Zizania latifolia ethanol extract (ETZL), which increases the content of tricin via enzymatic hydrolysis, for 8 weeks on liver-related outcomes, lipid metabolism, antioxidant activity, and fatigue compared to a placebo. Healthy Korean adult males aged 19-60 years were randomized into ETZL treatment and placebo groups, and alcohol consumption was 24.96 and 28.64 units/week, respectively. Alanine transaminase, a blood marker associated with liver cell injury, significantly decreased after 8 weeks compared to the baseline in the ETZL treatment group (p = 0.004). After 8 weeks, the treatment group showed significant changes in the levels of high-density lipoprotein and hepatic steatosis index compared to the baseline (p = 0.028 and p = 0.004, respectively). ETZL treatment tended to reduce antioxidant-activity-related factors, total antioxidant status, and malondialdehyde, but there was no significant difference. In the multidimensional fatigue scale, ETZL treatment showed a significant reduction in general fatigue and total-fatigue-related values after 8 weeks compared to the baseline (p = 0.012 and p = 0.032, respectively). Taken together, the 8-week treatment of enzyme-treated Zizania latifolia ethanol extract demonstrated positive effects on liver-related outcomes, lipid metabolism, and mental fatigue without adverse effects on safety-related parameters.

Health-Related Quality of Life and Fatigue in Children with Pompe Disease

ObjectivePompe disease is an inheritable metabolic myopathy caused by the deficiency of the lysosomal enzyme acid-⍺-glucosidase. The aim of this study was to investigate self-reported and parent-reported health related quality of life (HR-QOL) and fatigue in children with Pompe disease. Study designIn this cross-sectional study, the validated child health questionnaire (CHQ) and PedsQol multidimensional fatigue scale (PedsQol MFS) were used to respectively measure (both self-reported and parent-reported) HR-QOl and fatigue in children with Pompe disease. ResultsIn total, 24 Pompe patients with a median age of 9.6 years [IQR: 7.7-11.9], 14 had classic infantile Pompe disease. Self-reported HR-QOL was comparable to the healthy Dutch population on most domains, classic infantile patients scored mainly lower on physical functioning. Parents of classic infantile patients reported a significantly lower HR-QOL of their children on 9 domains, parents of non-classic patients on 5 domains.Self-reported fatigue levels in children with classic infantile Pompe disease were increased for 2 of 3 domains compared to healthy peers, fatigue in non-classic infantile Pompe patients did not differ. Parents of classic infantile patients reported higher levels of fatigue in all 3 domains compared to healthy children, whereas parents of childhood onset children scored higher on the cognitive fatigue domain. ConclusionChildren with Pompe disease report comparable HR-QOL on most domains compared to healthy peers. Contrarily, parent-reported HR-QOL was substantially lower on most domains compared to references values. As expected in relation to disease severity, unfavorable effects on HR-QOL and fatigue were more pronounced in classic infantile Pompe patients.

The development of fatigue after treatment for pediatric brain tumors does not differ between tumor locations.

Children 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. Fatigue 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 8years 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). Cognitive 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. The 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.

Fatigue assessment in children and adolescents undergoing oncology treatment

Objective: To evaluate the fatigue of children and adolescents undergoing cancer treatment. Methods: A cross-sectional study with 31 children and adolescents aged 5-17 years, undergoing cancer treatment. Data collection was carried out in the period January-August 2022 in a large pediatric hospital in Southern Brazil. There, the Pediatric Quality of Life InventoryTM Multidimensional Fatigue Scale questionnaire was applied to assess fatigue and collect clinical and sociodemographic data. In descriptive statistics, measures of central tendency and dispersion were used. Categorical variables were presented using absolute and relative frequencies. In inferential statistics, we use the Pearson or Spermann correlation tests with a significance level of 5%. Results: the prevalence of males (n=19; 61.3%) was observed. The mean age was 10.6±3.64 years and the mean treatment time was 6.0±3.3 months. Acute lymphoblastic leukemia (n=9; 29%) and central nervous system tumors (n=5; 16.2%) were the most prevalent oncological diseases. Chemotherapy was the most prevalent treatment modality (n=17; 54.8%) in participants; the combined modalities of chemotherapy with radiotherapy or surgery were those that caused the greatest increase in fatigue. Conclusion: Fatigue was present in all participants in this study. The tiredness dimension relative to sleep and/or rest was the one that presented the lowest scores, justifying the low scores also found in the general tiredness dimension.

The assessment of fatigue and sleep quality among children and adolescents with familial Mediterranean fever: A case-control and correlation study

To evaluate the sleep quality and fatigue levels in children with familial Mediterranean fever (FMF) in comparison to healthy children. The Pediatric Quality of Life Multidimensional Fatigue Scale (PedsQL-MFS) and the Pittsburgh Sleep Quality Index (PSQI) were the instruments utilized to assess fatigue and sleep quality in children with FMF and controls, respectively. Spearman’s rank coefficient was decisive in determining the association between patient-reported outcome measures and disease-related features. Two hundred twenty-five (59.3% female) patients and 182 (51.6% female) healthy counterparts were enrolled in the study. In PSQI, where high scores indicate sleep disturbance, the median score was significantly higher in the patient group (5; 3–6) than the control group (3; 2–4) (p < 0.001). PEDsQL-MFS demonstrated significantly lower fatigue levels in the control group than patients (p = 0.01). The level of fatigue in the patient group was found to increase in correlation with sleep problems (r: − 0.750, p < 0.001). Additionally, a high correlation was present between the PSQI/PedsQL-MFS scores and the number of attacks in the last year (r: − 0.645, p < 0.001/r: 0.721, p < 0.001, respectively). There was no difference in terms of fatigue and sleep disorders between mutations (homozygous, heterozygous, or compound heterozygous) in the MEFV gene (p > 0.05). Conclusion: High disease activity has a significant negative impact on the sleep quality and fatigue levels of patients with FMF. This study emphasizes the importance of assessing fatigue and sleep quality with objective outcome tools periodically in FMF patients throughout the disease course.What is Known:• Fatigue is a common matter that often accompanies rheumatic diseases and causes disability.• Chronic rheumatic diseases often experience poor sleep quality.What is New:• In high correlation with the disease severity of familial Mediterranean fever, sleep quality decreases and fatigue level increases significantly.• In familial Mediterranean fever patients, a negative correlation is present between age and the general fatigue and sleep/rest related fatigue scores (low scores indicating greater fatigue) and sleep quality is poorer in the adolescent age group.

Core outcome measurement set for research and clinical practice in post-COVID-19 condition (long COVID) in children and young people: an international Delphi consensus study "PC-COS Children".

The coronavirus disease 2019 (COVID-19) pandemic substantially impacted different age groups, with children and young people not exempted. Many have experienced enduring health consequences. Presently, there is no consensus on the health outcomes to assess in children and young people with post-COVID-19 condition. Furthermore, it is unclear which measurement instruments are appropriate for use in research and clinical management of children and young people with post-COVID-19. To address these unmet needs, we conducted a consensus study, aiming to develop a core outcome set (COS) and an associated core outcome measurement set (COMS) for evaluating post-COVID-19 condition in children and young people. Our methodology comprised of two phases. In phase 1 (to create a COS), we performed an extensive literature review and categorisation of outcomes, and prioritised those outcomes in a two-round online modified Delphi process followed by a consensus meeting. In phase 2 (to create the COMS), we performed another modified Delphi consensus process to evaluate measurement instruments for previously defined core outcomes from phase 1, followed by an online consensus workshop to finalise recommendations regarding the most appropriate instruments for each core outcome. In phase 1, 214 participants from 37 countries participated, with 154 (72%) contributing to both Delphi rounds. The subsequent online consensus meeting resulted in a final COS which encompassed seven critical outcomes: fatigue; post-exertion symptoms; work/occupational and study changes; as well as functional changes, symptoms, and conditions relating to cardiovascular, neuro-cognitive, gastrointestinal and physical outcomes. In phase 2, 11 international experts were involved in a modified Delphi process, selecting measurement instruments for a subsequent online consensus workshop where 30 voting participants discussed and independently scored the selected instruments. As a result of this consensus process, four instruments met a priori consensus criteria for inclusion: PedsQL multidimensional fatigue scale for "fatigue"; PedsQL gastrointestinal symptom scales for "gastrointestinal"; PedsQL cognitive functioning scale for "neurocognitive" and EQ-5D for "physical functioning". Despite proposing outcome measurement instruments for the remaining three core outcomes ("cardiovascular", "post-exertional malaise", "work/occupational and study changes"), a consensus was not achieved. Our international, consensus-based initiative presents a robust framework for evaluating post-COVID-19 condition in children and young people in research and clinical practice via a rigorously defined COS and associated COMS. It will aid in the uniform measurement and reporting of relevant health outcomes worldwide.

Instrument Pengukuran Kelelahan pada Pasien HIV

This study aims to identify instruments for measuring fatigue in HIV. The research method used is a narrative review with the criteria for articles published between 2019-2023, complete manuscripts available, and articles using primary data (RCT, cross-sectional, and cohort) in Indonesian and English. The research results showed The Chalder Fatigue Questionnaire (CFQ), Modified Fatigue Impact Scale (MFIS), Fatigue Severity Scale (FSS), Patient-Reported Outcomes Measurement System (PROMIS), HIV-Related Fatigue Scale, Ped-sQL Multidimensional Fatigue Scale (MFS ) and the Functional Assessment of Chronic Illness Therapy Fatigue scale (FACIT-F) are fatigue measurement instruments that can be used in HIV patients. A total of 7 (seven) fatigue measurement instruments were found. The seven instruments have been tested for validity and reliability. In conclusion, nurses can use this instrument to measure fatigue before developing management strategies for people with HIV. Keywords: HIV, Fatigue, Fatigue Measurement