Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires.METHODS: This observational, multicenter study included 107 children, aged 4-18 years, with Marfan syndrome (MFS), 58%; Loeys-Dietz syndrome (LDS), 7%; Ehlers-Danlos syndromes (EDS), 8%; and hypermobile Ehlers-Danlos syndrome (hEDS), 27%. The assessments included PROMIS Fatigue Parent-Proxy and Pediatric self-report, pain and general health Visual-Analogue-Scales (VAS) and a Childhood Health Assessment Questionnaire (CHAQ).RESULTS: Compared to normative data, the total HCTD-group showed significantly higher parent-rated fatigue T-scores (M = 53 (SD = 12), p = 0.004, d = 0.3), pain VAS scores (M = 2.8 (SD = 3.1), p < 0.001, d = 1.27), general health VAS scores (M = 2.5 (SD = 1.8), p < 0.001, d = 2.04) and CHAQ disability index scores (M = 0.9 (SD = 0.7), p < 0.001, d = 1.23). HCTD-subgroups showed similar results. The most adverse sequels were reported in children with hEDS, whereas the least were reported in those with MFS. Disability showed significant relationships with fatigue (p < 0.001, rs = 0.68), pain (p < 0.001, rs = 0.64) and general health (p < 0.001, rs = 0.59).CONCLUSIONS: Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.
BACKGROUND: The aims of the study were to examine the effects of a multidimensional rehabilitation program on cancer-related fatigue, to examine concurrent predictors of fatigue, and to investigate whether change in fatigue over time was associated with change in predictors.METHODS: SAMPLE: 72 cancer survivors with different diagnoses.SETTING: rehabilitation center.INTERVENTION: 15-week rehabilitation program.MEASURES: Fatigue (Multidimensional Fatigue Inventory), demographic and disease/treatment-related variables, body composition (bioelectrical impedance), exercise capacity (symptom-limited bicycle ergometry), muscle force (handheld dynamometry), physical and psychological symptom distress (Rotterdam Symptom Check List), experienced physical and psychological functioning (RAND-36), and self-efficacy (General-Self-Efficacy Scale, Dutch version). Measurements were performed before (T0) and after rehabilitation (T1).RESULTS: At T1 (n = 56), significant improvements in fatigue were found, with effect sizes varying from -0.35 to -0.78. At T0, the different dimensions of fatigue were predicted by different physical and psychological variables. Explained variance of change in fatigue varied from 42%-58% and was associated with pre-existing fatigue and with change in physical functioning, role functioning due to physical problems, psychological functioning, and physical symptoms distress.CONCLUSIONS: Within this selected group of patients we found that (a) rehabilitation is effective in reducing fatigue, (b) both physical and psychological parameters predicted different dimensions of fatigue at baseline, and (c) change in fatigue was mainly associated with change in physical parameters.
BACKGROUND: Research suggests that cancer rehabilitation reduces fatigue in survivors of cancer. To date, it is unclear what type of rehabilitation is most beneficial.OBJECTIVE: This randomized controlled trial compared the effect on cancer-related fatigue of physical training combined with cognitive behavioral therapy with physical training alone and with no intervention.DESIGN: In this multicenter randomized controlled trial, 147 survivors of cancer were randomly assigned to a group that received physical training combined with cognitive-behavioral therapy (PT+CBT group, n=76) or to a group that received physical training alone (PT group, n=71). In addition, a nonintervention control group (WLC group) consisting of 62 survivors of cancer who were on the waiting lists of rehabilitation centers elsewhere was included.SETTING: The study was conducted at 4 rehabilitation centers in the Netherlands.PATIENTS: All patients were survivors of cancer.INTERVENTION: Physical training consisting of 2 hours of individual training and group sports took place twice weekly, and cognitive-behavioral therapy took place once weekly for 2 hours.MEASUREMENTS: Fatigue was assessed with the Multidimensional Fatigue Inventory before and immediately after intervention (12 weeks after enrollment). The WLC group completed questionnaires at the same time points.RESULTS: Baseline fatigue did not differ significantly among the 3 groups. Over time, levels of fatigue significantly decreased in all domains in all groups, except in mental fatigue in the WLC group. Analyses of variance of postintervention fatigue showed statistically significant group effects on general fatigue, on physical and mental fatigue, and on reduced activation but not on reduced motivation. Compared with the WLC group, the PT group reported significantly greater decline in 4 domains of fatigue, whereas the PT+CBT group reported significantly greater decline in physical fatigue only. No significant differences in decline in fatigue were found between the PT+CBT and PT groups.CONCLUSIONS: Physical training combined with cognitive-behavioral therapy and physical training alone had significant and beneficial effects on fatigue compared with no intervention. Physical training was equally effective as or more effective than physical training combined with cognitive-behavioral therapy in reducing cancer-related fatigue, suggesting that cognitive-behavioral therapy did not have additional beneficial effects beyond the benefits of physical training.
Automated driving nowadays has become reality with the help of in-vehicle (ADAS) systems. More and more of such systems are being developed by OEMs and service providers. These (partly) automated systems are intended to enhance road and traffic safety (among other benefits) by addressing human limitations such as fatigue, low vigilance/distraction, reaction time, low behavioral adaptation, etc. In other words, (partly) automated driving should relieve the driver from his/her one or more preliminary driving tasks, making the ride enjoyable, safer and more relaxing. The present in-vehicle systems, on the contrary, requires continuous vigilance/alertness and behavioral adaptation from human drivers, and may also subject them to frequent in-and-out-of-the-loop situations and warnings. The tip of the iceberg is the robotic behavior of these in-vehicle systems, contrary to human driving behavior, viz. adaptive according to road, traffic, users, laws, weather, etc. Furthermore, no two human drivers are the same, and thus, do not possess the same driving styles and preferences. So how can one design of robotic behavior of an in-vehicle system be suitable for all human drivers? To emphasize the need for HUBRIS, this project proposes quantifying the behavioral difference between human driver and two in-vehicle systems through naturalistic driving in highway conditions, and subsequently, formulating preliminary design guidelines using the quantified behavioral difference matrix. Partners are V-tron, a service provider and potential developer of in-vehicle systems, Smits Opleidingen, a driving school keen on providing state-of-the-art education and training, Dutch Autonomous Mobility (DAM) B.V., a company active in operations, testing and assessment of self-driving vehicles in the Groningen province, Goudappel Coffeng, consultants in mobility and experts in traffic psychology, and Siemens Industry Software and Services B.V. (Siemens), developers of traffic simulation environments for testing in-vehicle systems.
Jongeren met chronische aandoeningen worden vaak geconfronteerd met problemen in het dagelijks functioneren, waarbij vermoeidheid wordt genoemd als het meest invaliderend. De prevalentie van vermoeidheid onder jongeren met chronische aandoeningen varieert tussen de 51-75%. Vermoeidheid kan onafhankelijk ontstaan van het onderliggende pathologisch mechanisme; uit literatuur blijkt dat ziekte-specifieke benaderingen weinig of nauwelijks effect hebben op vermoeidheid. Vermoeidheid wordt bovendien te laat opgemerkt of blijft onbehandeld. Inzicht in de ziekte-overstijgende mechanismen van vermoeidheid is van belang om vroegtijdig opsporen en de ontwikkeling van passende interventies te faciliteren. Dit postdoc onderzoek richt zich op het ontrafelen van ziekte-overstijgende mechanismen van vermoeidheid vanuit het perspectief van jongeren, het gezin en de fysieke en sociale leefomgeving. Binnen een longitudinale cohortstudie gedurende 12 maanden worden 208 jongeren met verschillende chronische aandoeningen gemonitord. Naast traditionele onderzoeksmethodieken zoals vragenlijsten en fysieke testen, wordt gebruik gemaakt van remote sensoring, linked data en context mapping (=kwalitatieve methode). Studenten die participeren in het onderzoek zullen de mogelijkheden en beperkingen van zulke methoden ervaren. Dit kan o.a. bijdragen aan het integreren van zorgtechnologie in het dagelijks (kinder)fysiotherapeutisch handelen. We ontwikkelen een theoretisch raamwerk dat de basis legt voor betere vroegdetectie (op afstand en non-invasief) van vermoeidheid en voor het identificeren van mogelijke aangrijpingspunten voor behandeling (doelstelling 1 en 2). Verder draagt het postdoc onderzoek bij aan een beter inzicht in de rol van de sociale en fysieke leefomgeving bij de maatschappelijke participatie van jongeren met chronische aandoeningen (doelstelling 3). Studenten zullen in veldwerk ter plaatse metingen doen, de leefsituatie verkennen en samen met zorgprofessionals en docenten hun klinische blik verrijken. Doordat zij daadwerkelijk in de leefomgeving van jongeren zelf aanwezig zijn kan dit bijdragen aan bewustzijn over de rol van verschillende sociale en fysieke factoren op vermoeidheid en op de maatschappelijke participatie van jongeren met uiteenlopende chronische aandoeningen.
In dit onderzoek wordt de uitvoerbaarheid van een bewegingsprogramma tijdens chemoradiatie bij patienten met hoofd-halskanker onderzocht.The feasibility of an exercise intervention during CRT in HNSCC patients will be studied to design an optimal, large-scale RCT comparing the exercise intervention during CRT to usual care (UC) with the aim of a beneficial effect on the tolerability of CRT and physical fitness, body composition, fatigue and QoL on the longer term.