Self-reported Quality Of Life Research Articles

Incentives for Combining Structure and Process Quality to Improve Outcome in Rheumatic Treatment

The study investigates the effects of multidisciplinary treatment for rheumatic treatment regarding (a) financial feasibility based on costs/remuneration in comparison to conventional treatment and (b) Patient reported outcome measures (Proms) to check for effectiveness. For (a), cost data and remuneration with and without multimodal rheumatologic complex treatment (MRCT) is analysed, including cost types. The database encompasses 18,794 treatment cases. For (b), a case study with retrospective patient data analysis ( N = 375, all treated in a specialized German hospital) regarding self-reported quality of life and physical functions is carried out for subjects receiving MRCT. While conventional treatment is fully covered, MRCT is only incentivized for cases with long in-patient treatment, so financial feasibility for hospitals is limited. Patients with MRCT reported significant improvements in quality of life ( p < .001; Nottingham Health Profile) as well as in physical functions (Functional Questionnaire Hannover [FFbH], p < .001) at discharge compared to admission. As short-term MRCT is not fully remunerated, less severe cases may not receive adequate care. Financial incentives should at least cover the costs incentivize the offer and thus ensure patient access to MRCT. Measuring the outcomes of the treatment process by means of Proms can contribute to the internal quality management. It also offers an inter-institutional benchmark to service providers, which can be used as a basis for performing comparative quality measurements and researching effectiveness.

Factors affecting acceptance of palliative care in mainland China: a national cross-sectional study

China ranks 53rd in the list of 81 countries included in the Quality of Death and Dying Index 2021. Cancer is one of the leading causes of death in China. Although the country is highly burdened with cancer, with 4·5 million new diagnoses and more than 3 million cancer deaths in 2020 alone, palliative care services in mainland China are extremely scarce. The aim of this study was to investigate the attitudes of people towards palliative and hospice care, and to analyse the associations between attitudes and potential explanatory variables. A survey was done between July 10, 2021, and Sept 15, 2021. We used a multistage sampling strategy to recruit participants from 120 cities across mainland China. The questionnaire aimed to assess the willingness of respondents to receive palliative care. Survey data were analysed by multiple stepwise linear regression to establish the factors associated with willingness to receive palliative care. Sex, education level, possession of a house, perceived anxiety on the Generalised Anxiety Disorder Assessment scale, perceived pressure, social support (evaluated through the Perceived Social Support Scale), family health (evaluated through the Short-Form Family Health Scale), health literacy (evaluated through the Short-Form Health Literacy Questionnaire), personal sense of health (evaluated through the EuroQol Visual Analogue Scale), self-reported quality of life and sense of health (evaluated trough the EuroQol Five Dimensions Questionnaire), and access to medical insurance were analysed as potential explanatory variables affecting acceptance of palliative care. Standardised regression coefficients (β) were used in multiple stepwise linear regression to reflect the effect of variables on the results. 11 031 respondents completed the survey. The average willingness to accept palliative care was scored at 65·02 points in a visual analogue scale of 0-100 points. Men (β=-0·02) were more likely than women to decline having palliative care. Respondents holding a bachelor's degree or higher (β=0·04), owning more residential properties (two: β=0·02; three or more houses: β=0·01), self-reporting mild perceived anxiety (β=0·03), higher perceived pressure (moderate pressure: β=0·05; severe pressure: β=0·06), or higher scores on the Perceived Social Support Scale (β=0·10), the Short-Form Family Health Scale (β=0·12), the Short-Form Health Literacy Questionnaire (β=0·16), the EuroQol Visual Analogue Scale (β=0·21), the EuroQol Five Dimensions Questionnaire (β=0·05), or with access to medical insurance providing higher reimbursement (employee health insurance and commercial health insurance: β=0·03; government insurance: β=0·04) were more willing to accept palliative care. Sex, house ownership, perceived anxiety, perceived pressure, social support on the Perceived Social Support Scale, and health literacy were the main affecting factors on Chinese residents' acceptance level and attitudes towards palliative care identified by this study, in which we discuss the public acceptance of palliative care on the basis of a nationwide sample from China. Despite some substantial reported outcomes in palliative care, the study is limited by reporting bias and selection bias. The scientific research project of Shaanxi Provincial Education Department, 2021 (grant 21JZ017), and Youth Project of Key Research Bases of Philosophy and Social Sciences in the Sichuan Province (grant YF22-Q13).

Quality of Life for Children With Functional Abdominal Pain and Their Parents Copmared to Healthy Individuals

Objectives: Functional abdominal pain (FAP) is a debilitating disorder that has a high prevalence among children. The goal of this study is to evaluate patients’ and parents’ perceptions of health-related quality of life (QoL) for children with FAP. Methods: Between April 2018 and June 2019, a total of 200 children (including 100 with FAP and 100 healthy individuals) and 200 parents participated in this study. The participants completed a health-related QoL scale (pediatric quality of life inventory) that is scored on a scale from 0 (poor) to 100 (best). Children with FAP and their parents were compared to a control group consisting of healthy children. Results: Children with FAP had lower self-report QoL scores (46.97±17.43) compared to their healthy peers (78.69±13.02) and the difference was significant (P<0.05). Parents of children with FAP reported lower QoL scores compared to parents of the control group (45.56±14.19 vs 75.94±15.06, P<0.05) but it was similar to the scores for their children. Conclusions: The present study demonstrated that children with FAP and their parents experience a poor QoL compared to their healthy peers.

SingStrong – singing for better lung health in pulmonary fibrosis: A feasibility study

BACKGROUND & PURPOSE: Pulmonary fibrosis (PF) is a debilitating, incurable disease. Strategies to optimise health-related quality of life and minimise symptom impact are advocated. Available treatment options such as pulmonary rehabilitation have been severely disrupted due to COVID-19. This feasibility study explored the clinical efficacy and acceptability of an online singing and breathing retraining programme (SingStrong) for people with PF. METHODS: The weekly online programme conducted over 12 weeks was comprised of 45-minute classes of mindfulness, breathing retraining, vocal exercises and singing conducted by a trained vocal coach. People with PF were invited to participate and sessions were recorded for non-attenders. Demographic data were collected, and the St Georges Respiratory Questionnaire (SGRQ) and Idiopathic PF Patient Reported Outcome measure (IPF-PROM) were administered. The questionnaire also invited participants to provide feedback on the utility, enjoyability and main pros/cons of the intervention. Participation in the research element of the programme was not required to attend the weekly classes. RESULTS: Of 24 participants recruited, data from 15 (mean (Standard Deviation) age of 66 (8.7); male: n = 8) who completed both pre and post-intervention questionnaires were analysed. Statistically significant improvements were recorded in the IPF-PROM (p = 0.019) and self-reported quality of life (p = 0.028). Class attendance by study participants and the broader PF group cumulatively, increased from 14 to 25 participants between weeks 1 and 12. Qualitatively, strong satisfaction with classes and improved efficacy in self-management of lung health, in particular breathlessness, were reported. CONCLUSIONS: Singing and breathing retraining interventions may endow biopsychosocial benefits for people with PF, in the presence of modest objective clinical gains. Singing programmes are popular and may provide helpful adjuncts to existing clinical strategies such as pulmonary rehabilitation.

Abstract CT114: BORTEM-17 - phase IB/II single arm, non-randomized controlled multicenter study investigating whether sequential bortezomib and temozolomide is safe and effective in recurrent GBM with unmethylated MGMT promoter

Abstract Background: Glioblastoma (GBM) is an aggressive brain tumor where median survival is approx. 12 months in unselected patients, largely due to activity of O6-methylguanine DNA methyltransferase (MGMT) that renders GBM resistant to temozolomide (TMZ) chemotherapy. There is no standard treatment for recurrent GBM patients who progress under TMZ treatment. We previously demonstrated that bortezomib (BTZ) depletes MGMT protein and sensitizes MGMT unmethylated GBM cells to TMZ in vitro and in PDX models when administered in precise dose and sequential schedule. TMZ dose escalation in phase IB part of the trial was tolerated, safe and associated with immunological responses in selected patients. We hypothesized that recurrent GBM patients with unmethylated MGMT promoter may obtain clinical benefit from sequential combination of BTZ and TMZ treatment. Methods: The sample size was calculated to 63 patients for this phase IB/II study, 10 were included in the phase IB and the rest are ongoing in phase II. A cohort of 467 patients treated at Oslo and Haukeland University Hospitals were used as controls. We report interim results of n=32 MGMT unmethylated recurrent GBM patients progressing at least 12 weeks after completion of postoperative radiotherapy, with adequate organ function, Karnofsky performance status (KPS) ≥70 and radiologically measurable lesions treated on BORTEM-17 protocol. The patients received intravenous BTZ 1.3mg/m2 on days 1,4,7, during each 4-week chemotherapy cycle starting on day 3 with per oral TMZ at 200mg/m2 5 days/week. Mantel-Cox regression analyses was used to calculate survival. Results: Until January 2022, 32 patients with median age 54 yrs (range 25-66 yrs), 23 male and 9 female were treated at 3 different referral university hospitals in Norway. 81% (26/32) were IDH wt. Median KPS was 90 (70-100) and median NANO score was 1 (0-7). 9/32 patients are still alive. Preliminary data indicates 20% of patients showed clinical and radiological responses, where 4/6 (67%) obtained partial response and 2/6 (33%) had stable disease. BORTEM-17 patients’ median survival was significantly better than all controls (23.7 months vs 12.1 months) HR0.61, 95% CI [0.44-0.85], P=0.003. The Median survival for BORTEM-17 patients was 23.7 months vs 11.4 months for control MGMT unmethylated patients HR0.46, 95% CI [0.33-0.63], P<0.0001. When adjusted for age, BORTEM-17 patients’ median survival was 23.7 months vs 12.9 months of control MGMT unmethylated patients HR0.51, 95% CI [0.34-0.75], P=0.0007. Patients’ self-reported quality of life was good. Majority of the side effects were mild or moderate. Patients with disease progression from the study received another line of treatment according to the institutional practice. Conclusion: Combination of BTZ and TMZ administered sequentially is safe. Interim analysis indicates objective radiological response and increased median survival of MGMT unmethylated patients. ClinicalTrials.gov identifier: NCT03643549 Citation Format: Dorota Goplen, Mohummad Aminur Rahman, Jorunn Brekke, Victoria Arnesen, Anne Simonsen, Andreas Waha, Kirstin Marienhagen, Leif Oltedal, Judit Haasz, Hrvoje Miletic, Tora Skeidsvoll Solheim, Petter Brandal, Stein Atle Lie, Martha Chekenya. BORTEM-17 - phase IB/II single arm, non-randomized controlled multicenter study investigating whether sequential bortezomib and temozolomide is safe and effective in recurrent GBM with unmethylated MGMT promoter [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2022; 2022 Apr 8-13. Philadelphia (PA): AACR; Cancer Res 2022;82(12_Suppl):Abstract nr CT114.

Classifying and characterizing the development of self-reported overall quality of life among the Chinese elderly: a twelve-year longitudinal study

BackgroundTo promote healthy aging, the information about the development of quality of life (QoL) is of great importance. However, the explorations of the heterogeneity in the change of QoL under the Chinese context were limited. This study aimed to identify potential different development patterns of QoL and the influential factors using a longitudinal, nationally representative sample of the Chinese elderly.MethodsWe adopted a five-wave longitudinal dataset from the Chinese Longitudinal Healthy Longevity Survey (CLHLS), and a total of 1645 elderly were obtained. The sample had a mean age of 72.7 years (SD = 6.64) and was 47.2% male. Overall QoL was measured through self-report during the longitudinal process. We utilized the conditional growth mixture model (GMM) with time-invariant covariates (TICs) to explore various development patterns and associated factors.ResultsThree distinct trajectories of self-reported overall QoL were identified: the High-level Steady Group (17.08%), the Mid-level Steady Group (63.10%), and the Low-level Growth Group (19.82%). Results also indicated that several factors predicted distinct trajectories of self-reported overall QoL. Those elderly who received enough financial resources, had adequate nutrition, did not exhibit any disability, engaged in leisure activities, and did less physical labor or housework at the baseline were more likely to report a higher level of overall QoL over time.ConclusionsThere existed three development patterns of self-reported overall QoL in elders, and the findings provided valuable implications for the maintenance and improvement of QoL among the Chinese elderly. Future studies could examine the influence of other confounding factors.

April PC-FACS.

April PC-FACS.

Patterns of impairment in decision-making capacity in Alzheimer's disease and its relationship with cognitive and clinical variables.

Objectives:To investigate the patterns of impairment in decision-making abilities and their relationship with cognitive and clinical symptoms in people with Alzheimer’s disease. We hypothesized that decision-making abilities would not be impaired at the same level and would be related to impairment of global cognition and other clinical symptoms of the disease.Methods:Using a cross-sectional design, we included a consecutive sample of 102 people with Alzheimer’s disease and their respective caregivers. We investigated the relationship between decision-making capacity and quality of life (QoL), disease awareness, mood, functionality, neuropsychiatric symptoms, and cognition.Results:Different levels of impairment were observed in the participants’ decision-making abilities. Understanding, appreciation, and reasoning were correlated, but expressing a choice was only correlated with appreciation. Deficits in understanding were related to impaired disease awareness, lower self-reported QoL, and lower comprehension of spoken language. Better appreciation was related to better orientation and lower age. Better reasoning was related to better orientation and better self-reported QoL. Deficits in expressing a choice were related to lower self-reported QoL.Conclusion:The pattern of impairment in decision-making abilities was not linear. Each decision-making ability was related to different cognitive and clinical deficits. Therefore, cognitive functioning is an insufficient criterion for judging an individual’s decision-making ability.

Description of a clinical intervention among patients admitted to the medium secure forensic psychiatric services in Central Denmark Region

IntroductionPatients with schizophrenia suffer from increased mortality rates equivalent to 15-20 years shorter life expectancy. Up to 60% of this excess mortality can be explained by preventable, somatic conditions like cardiovascular, metabolic, and respiratory comorbidities. As forensic psychiatric (FP) patients often experience the triple stigmatization of mental illness, substance misuse and criminal conviction, the risk of suboptimal diagnosis and treatment may be high. Although benefits from the addition of general practitioner (GP) services to non-FP wards have been shown elsewhere, this cross-sectoral approach has never been attempted in a Danish FP ward.ObjectivesOne purpose of this project is to evaluate the associations between self-reported quality of life and objective measures of somatic health.MethodsA clinical intervention in which a GP consults patients in all medium secure wards in the Central Denmark Region (N=72). The consultation includes a physical examination, medication review, and evaluation of blood samples. Data is collected from: electronic patient files and questionnaires regarding quality of life (SF-12), lifestyle, and attitude towards GP services.ResultsThe population will be described in regards to socio-demographic, clinical, and forensic characteristics. Associations will be made between quality of life (SF-12), metabolic syndrome, blood markers, and heart-SCORE risk. Risk profiles for endocrinologic and coronary illness will be examined.ConclusionsResults may guide future health interventions and will be used as a basis for adjustments to the current project.DisclosureNo significant relationships.

Direct Support Professionals: Stress and Resiliency Amidst the COVID-19 Pandemic.

This study reports on the results of an online survey of direct support professionals (DSPs) during the COVID-19 pandemic in June 2020 to measure their perceived quality of life, stressors, coping/resilience skills, and knowledge of health care rights directly related to the pandemic for the persons that they support. Specifically, we examined direct support workers' perceptions of their quality of life, levels of stress, and their self-reported resilience skills. We found that perceived stress was strongly correlated with both self-reported quality of life and resilience, but not with years of DSP experience. Moreover, while DSPs overwhelmingly knew and affirmed health care rights for people with disabilities, they were less knowledgeable about their legal rights during hospital stays.

Characterizing anxiety, pain, sleep, and quality of life among patients in a state Medical Marijuana Program

BackgroundCannabis is increasingly used for symptom management, but its effects on health-related quality of life (QoL) have been inconclusive. ObjectivesThe goal of the present study was to characterize self-reported symptoms and QoL among patients certified to use medical cannabis. MethodsThese data are from the baseline assessment of a 12-month longitudinal study. The survey assessed certifying conditions, current medications, symptoms and symptom severity. QoL was assessed using the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) which includes Physical Well-Being (PWB), Social/Family Well-Being (SWB), Emotional Well-Being (EWB), Functional Well-Being (FWB), and the Palliative Care subscale. Higher scores indicated better QoL. ResultsOverall, 210 patients (114 female, 92 male, 3 non-binary, 1 refused) completed the survey. The most common certifying conditions were pain (48.6%), anxiety (36.7%), and PTSD (15.7%) and the most common symptoms were anxiety (65.2%), pain (56.7%), sleep disturbance (38.6%), and depression (31.4%). Compared to normative data, this sample reported lower QoL, specifically EWB and SWB scores (i.e., T-Scores<45). Opioid/benzodiazepine/sedative-hypnotic use was associated with lower QoL on all subscales (except SWB and FWB) (ps < 0.05). Greater number of self-reported symptoms and medical conditions were associated with lower QoL (ps < 0.01). ConclusionDespite mixed evidence regarding cannabis’ efficacy for anxiety, 36.7% of the current sample were certified by a physician for anxiety. Lower QoL was associated with more self-reported comorbid medical conditions, higher total symptom count, and reported use of an opioid and/or benzodiazepine. Future longitudinal data will provide critical information regarding the trajectory of these symptoms and QoL.

Online Cognitive Behavior Therapy for Two College Students With Attention-Deficit/Hyperactivity Disorder

Attention-deficit/hyperactivity disorder (ADHD) is a prevalent disorder among college students. Although there is growing literature supporting the effectiveness of cognitive behavioral therapy (CBT) for this population, no previous study has investigated the feasibility of it being delivered online. In addition, recent evidence suggests that online therapy could be possible for other diagnoses such as depression, anxiety, or health-related disorders. Therefore, research in this area could be critical, as online settings could also improve accessibility to evidence-based interventions for college students with ADHD. This study describes the implementation of CBT for ADHD intervention delivered online for two college students with this diagnosis. We found improvements in both self-reported and clinician-assessed outcomes, in measuring ADHD-related behaviors, executive functioning, emotional comorbidities, and quality of life. These changes were more evident in the case that was more severe at pre-treatment, and were maintained at a 6-month follow-up; even further improvements in self-reported quality of life were observed. These findings support the potential feasibility and clinical utility of online CBT in this population.

Classification of painful or painless diabetic peripheral neuropathy and identification of the most powerful predictors using machine learning models in large cross-sectional cohorts

BackgroundTo improve the treatment of painful Diabetic Peripheral Neuropathy (DPN) and associated co-morbidities, a better understanding of the pathophysiology and risk factors for painful DPN is required. Using harmonised cohorts (N = 1230) we have built models that classify painful versus painless DPN using quality of life (EQ5D), lifestyle (smoking, alcohol consumption), demographics (age, gender), personality and psychology traits (anxiety, depression, personality traits), biochemical (HbA1c) and clinical variables (BMI, hospital stay and trauma at young age) as predictors.MethodsThe Random Forest, Adaptive Regression Splines and Naive Bayes machine learning models were trained for classifying painful/painless DPN. Their performance was estimated using cross-validation in large cross-sectional cohorts (N = 935) and externally validated in a large population-based cohort (N = 295). Variables were ranked for importance using model specific metrics and marginal effects of predictors were aggregated and assessed at the global level. Model selection was carried out using the Mathews Correlation Coefficient (MCC) and model performance was quantified in the validation set using MCC, the area under the precision/recall curve (AUPRC) and accuracy.ResultsRandom Forest (MCC = 0.28, AUPRC = 0.76) and Adaptive Regression Splines (MCC = 0.29, AUPRC = 0.77) were the best performing models and showed the smallest reduction in performance between the training and validation dataset. EQ5D index, the 10-item personality dimensions, HbA1c, Depression and Anxiety t-scores, age and Body Mass Index were consistently amongst the most powerful predictors in classifying painful vs painless DPN.ConclusionsMachine learning models trained on large cross-sectional cohorts were able to accurately classify painful or painless DPN on an independent population-based dataset. Painful DPN is associated with more depression, anxiety and certain personality traits. It is also associated with poorer self-reported quality of life, younger age, poor glucose control and high Body Mass Index (BMI). The models showed good performance in realistic conditions in the presence of missing values and noisy datasets. These models can be used either in the clinical context to assist patient stratification based on the risk of painful DPN or return broad risk categories based on user input. Model’s performance and calibration suggest that in both cases they could potentially improve diagnosis and outcomes by changing modifiable factors like BMI and HbA1c control and institute earlier preventive or supportive measures like psychological interventions.

Validation of low anterior resection syndrome score in Brazil with Portuguese.

This study was performed to investigate the convergent validity, discriminative validity, and reliability of the Brazilian version of the low anterior resection syndrome (LARS) score in a population with low educational and socioeconomic levels. The LARS score was translated into the Portuguese language by forward- and back-translation procedures. In total, 127 patients from a public hospital in Brazil completed the questionnaires. The convergent validity was tested by comparing the LARS score with the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core Module 30 (QLQ-C30) and with patients' self-reported quality of life. For the discriminative validity, we tested the ability of the score to differentiate among subgroups of patients regarding neoadjuvant radiotherapy, type of surgery, and tumor distance from the anal verge. The test-retest reliability was investigated in a subgroup of 36 patients who responded to the survey twice in 2 weeks. The LARS score demonstrated a strong correlation with 5 of 6 items from the EORTC QLQ-C30 (P<0.05) and good concordance with patients' self-reported quality of life (95.3%), confirming the convergent validity. The score was able to discriminate between subgroups of patients with different clinical characteristics related to LARS (P<0.001). The agreement between the test and retest showed that 86.1% of the patients remained in the same LARS category, and there was no significant difference between the LARS score numerical values (P=0.80), indicating good reliability overall. The Brazilian version of the LARS score is a valid and reliable instrument to assess postoperative bowel function in a population with low educational and socioeconomic levels.

Comparing Academic Challenges and Quality of Life in Concussed Adolescents Prior to and During the Covid-19 Pandemic

Background:Post-concussion sequelae in adolescents include physical, cognitive, and psychosocial effects that may result in reduced quality of life (QOL) and academic challenges when returning to school. The COVID-19 pandemic resulted in altered teaching and learning models outside the traditional in-person classroom, and elevated psychosocial stress and isolation among adolescents. It is unknown whether these changes affected QOL or academic challenges post-concussion. Hypothesis/Purpose: To compare self-reported QOL and academic challenges among concussed adolescents prior to and during the COVID-19 pandemic.Methods:Concussed adolescents were enrolled from secondary schools and children’s medical centers across seven sites into the Sport Concussion Outcomes in Pediatrics (SCOPE) study (PRiSM Concussion RIG). Participants completed demographics, medical history, symptom report, the Concussion Learning Assessment and School Survey (CLASS) and QOL via PROMIS Pediatric Global 25 during their first evaluation visit. Participants were grouped by date ranges: September 2018-January 2020 (Pre-COVID-19) and September 2020-May 2021 (COVID-19). No participants were enrolled between February-August 2020 (cessation of clinical research activities during this time.).Results:A total of 141 patients were enrolled. Mean age=14.9±2.4 years, 61% self-reported as male, 82% white and 85% not Hispanic or Latino, 5.2+3.1 days post-injury (range=1-14 days). Seventy-four patients were enrolled prior to COVID, and 67 were enrolled during COVID (Table 1). No significant differences were found between the ‘Pre-COVID-19’ group versus ‘During COVID-19’ group in symptom resolution, symptom severity score, QOL, or academic concerns (Table 2). The only difference was the ‘person at school who is best to coordinate support.’ A significantly lower proportion of participants who sustained their concussion during COVID-19 reported their principal/assistant principal would be the best person to coordinate support compared to those who sustained their concussion before the COVID-19 pandemic. In contrast, a significantly higher proportion of those who sustained their concussion during the COVID-19 pandemic reported their coach would be the best person to coordinate support.Conclusion:In this convenience yet nationally representative sample, students who sustained a concussion during the pandemic did not report increased academic concerns or reduced QOL compared to those whose injury was prior to the pandemic. Median symptom severity was lower during the pandemic, though not statistically significant. These findings could represent shifted priorities of the principal/assistant principal but still adequate support from medical and school-based staff; less academic stress and greater flexibility during the COVID-19 pandemic; or may represent limitations in the CLASS instrument to detect differences that occurred during the pandemic.Table 1Participant characteristics by group. Data are presented as mean (standard deviation) or n (% within group).Table 2Clinical and Quality of Life characteristics (via PROMIS Pediatric Global 25) between groups, assessed at the initial post-concussion assessment. Data are presented as median [interquartile range] and compared using Mann Whitney U tests.

Post-COVID-19 fatigue: the contribution of cognitive and neuropsychiatric symptoms

Fatigue in its many forms of physical, mental, and psychosocial exhaustion is a common symptom of post-COVID-19 condition, also known as “Long COVID.” Persistent fatigue in COVID-19 patients is frequently accompanied by cognitive dysfunction and neuropsychiatric symptoms; however, less is known about the relationships between these components of post-COVID-19 condition and fatigue itself. Consequently, the present study sought to (1) distinguish the types of fatigue experienced by participants, and (2) investigate whether cognitive deficits across various domains and neuropsychiatric conditions predicted these different types of fatigue. The study included 136 COVID-19 patients referred for neuropsychological evaluation due to cognitive complaints 8 months on average after SARS-CoV-2 infection. Measures included self-reported fatigue (physical, cognitive, and psychosocial), neuropsychiatric questionnaires (assessing symptoms of depression, anxiety, apathy, and executive functioning), a comprehensive neuropsychological assessment, and self-reported quality of life and everyday functioning. Results showed that reports of clinical significant fatigue were pervasive in our sample (82.3% of participants), with physical fatigue rated highest on average relative to the subscale maximum. Elevated levels of apathy, anxiety, and executive dysfunction in neuropsychiatric measures along with executive and attentional difficulties on cognitive tests were found to be consistently important predictors among different types of fatigue. This implicates both cognitive and neuropsychiatric symptoms as predictors of fatigue in post-COVID-19 condition, and stresses the importance of a holistic approach in assessing and considering potential treatment for COVID-19 patients experiencing fatigue.

Longitudinal Follow-Up of Mood in Cervical Dystonia and Influence on Age at Onset.

Anxiety and depression are highly prevalent conditions in cervical dystonia and considered intrinsic to the disease mechanism. Psychiatric symptoms do not appear to be influenced by botulinum toxin therapy. Studies focusing on changes in mood disorder during the course of the disease are limited in this chronic, lifelong disorder. To assess the longitudinal prevalence of mood disorder, pain, and quality of life in patients with cervical dystonia attending a botulinum toxin clinic. Patients involved in phase I of our study were invited to be involved in reassessment using the Beck Depression Inventory, Second Revision; Beck Anxiety Index; Cervical Dystonia Impact Profile-58 (CDIP-58); and the Toronto Western Spasmodic Torticollis Rating Scale-2 Pain Scale (TWSTRS2-Pain). A total of 53 participants took part after a mean study interval duration of 24months. There were no significant differences between the 2 study time points in the prevalence of anxiety (P= 0.2919) and depressive symptoms (P= 0.5). Self-reported quality of life by CDIP-58 (P= 0.96) and pain by TWSTRS2-Pain (P= 0.9321) were unchanged. Men and women with significant symptoms of mood disorder had an earlier age of onset of cervical dystonia (P= 0.008). Anxiety and depressive symptoms persist in cervical dystonia, seem to be unrelated to pain severity, and need to be specifically targeted to improve quality of life. The relationship between mood disorder and age of onset suggest that mood disorder may be part of the disease pathophysiology.

Predictors of Functional School Outcome in Children With Pediatric Acquired Brain Injury.

ObjectiveAmong the variety of domains that may be impacted after pediatric acquired brain injury (pABI) are functional school outcomes. The purpose of this study was to identify demographic, medical, and psychological factors associated with impairments in functional school outcomes, defined as school absence, need of educational and psychological services, quality of life (QoL) in the school setting, and academic performance in children with pABI, with a specific emphasis on the significance of fatigue.Materials and MethodWe used baseline data from a randomized controlled trial. The sample consisted of seventy-six children aged 10 to 17 (M = 13 yrs) with pABI in the chronic phase (>1 year). All completed assessments of school-related QoL, academic performance, global functioning, fatigue, IQ, behavioral problems, and executive function.ResultsFatigue, IQ, global functioning, behavioral problems, and sex emerged as potential predictors for functional school outcomes. Of note, overall fatigue emerged as the strongest potential predictor for parent-reported QoL in school (β = 0.548; p < 0.001) and self-reported QoL in school (β = 0.532; p < 0.001).ConclusionsFollowing pABI, specific psychological, medical, and demographic factors are associated with functional school outcomes. Neither of the injury-related variables age at insult and time since insult were associated with functional school outcomes. Overall, our findings may suggest that a reintroduction to school with personalized accommodations tailored to the child's specific function and symptoms, such as fatigue, is recommended.

Prevalence of malnutrition and nutrition-related complications in patients with gastroenteropancreatic neuroendocrine tumours.

Cross-sectional studies report that up to 25% of people with gastroenteropancreatic neuroendocrine tumours (GEP NET) are malnourished. However, the changes in nutritional status and dietary intake over time are unknown. The present study aimed to comprehensively describe the impact of a GEP NET on nutritional status and quality of life (QOL). Patients diagnosed with a GEP NET were recruited to this prospective longitudinal study on initial attendance to the NET Unit at two tertiary hospitals in Melbourne (VIC, Australia). Patient self-reported QOL measures (European Organisation for Research and Treatment Cancer QLC-C30 and QLC-GINET21) and nutritional outcomes (nutritional status, weight change, fat-free mass [FFM], dietary change, dietitian contact) were collected bi-monthly for six months. Sixty-one patients were recruited (66% male) with a mean ± SD age of 62 ± 12 years, predominantly diagnosed with small intestinal NET and Grade 1/2 disease. Commonly reported symptoms were fatigue (79%), abdominal discomfort (75%) and pain (68%). More patients were malnourished at baseline than at 6 months (29% vs. 13%). Over this 6months, 48% lost weight, 20% lost ≥ 5% of their body weight, and 62% lost FFM with an average FFM loss of 2.8kg (95% confidence interval=2.0, 3.6), consistent with altered body composition. Dietary change was reported by 56% at baseline and 53% at six months, but only 21% consulted a dietitian at baseline and 18% at 6 months. Clinically significant loss of weight and FFM affected many patients with a GEP NET; however, few patients were referred to/or received a consultation with a dietitian. Valid screening practices are needed to identify weight loss and nutrition issues in GEP NET patients, and to facilitate referral to dietitian services.

Change Over 11-13 Year Periods in Quality of Life, Emotional Problems and Negative Stressful Life Events Among 13-17 Year Old Students.

Studies investigating changes in the general population over time concerning adolescent self-reported Quality of life (QoL) are sparse. The aim of this study is to investigate stability and change over more than a decade in self-reported QoL, emotional problems, and negative stressful life-events among students. Three large cross-sectional samples (N = 1032, 4744 and 3826) of 13-17-year-old adolescents attending public school in the Norwegian County of Trøndelag provide data, one from 2017 to 2019 and two from 11 and 13years earlier. We analyzed linear and binary linear regression adjusted for age. We found few indications of large changes in overall QoL. The exception was a 50% increase in reported emotional problems in both girls and boys. Girls also reported an increase of sexually uncomfortable/abusive acts from peers from 3.7 to 7.0%. The observed changes must be addressed through public health interventions targeting school as an important arena.