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.
Purpose: To study the association between fatigue and participation and QoL after acquired brain injury (ABI) in adolescents and young adults (AYAs). Materials & Methods: Cross-sectional study with AYAs aged 14–25 years, diagnosed with ABI. The PedsQL™ Multidimensional Fatigue Scale, Child & Adolescent Scale of Participation, and PedsQL™4.0 Generic Core Scales were administered. Results: Sixty-four AYAs participated in the study, 47 with traumatic brain injury (TBI). Median age at admission was 17.6 yrs, 0.8 yrs since injury. High levels of fatigue (median 44.4 (IQR 34.7, 59.7)), limited participation (median 82.5 (IQR 68.8, 92.3)), and diminished QoL (median 63.0 (IQR 47.8, 78.3)) were reported. More fatigue was significantly associated with more participation restrictions (β 0.64, 95%CI 0.44, 0.85) and diminished QoL (β 0.87, 95%CI 0.72, 1.02). Conclusions: AYAs with ABI reported high levels of fatigue, limited participation and diminished quality of life with a significant association between fatigue and both participation and QoL. Targeting fatigue in rehabilitation treatment could potentially improve participation and QoL.
MULTIFILE
This project aims to develop a measurement tool to assess the inclusivity of experiences for people with varying challenges and capabilities on the auditory spectrum. In doing so, we performed an in-depth exploration of scientific literature and findings from previous projects by Joint Projects. Based on this, we developed an initial conceptual model that focuses on sensory perception, emotion, cognition, and e[ort in relation to hearing and fatigue. Within, this model a visitor attraction is seen as an “experienscape” with four key elements: content, medium, context, and individual. In co-creative interviews with experts by experience with varying challenges on the auditory spectrum, they provided valuable insights that led to a significant expansion of this initial model. This was a relevant step, as in the scientific and professional literature, little is known about the leisure experiences of people with troubled hearing. For example, personal factors such as a person’s attitude toward their own hearing loss and the social dynamics within their group turned out to greatly influence the experience. The revised model was then applied in a case study at Apenheul, focusing on studying differences in experience of their gorilla presentation amongst people with varying challenges on the auditory spectrum.Societal issueThe Netherlands is one of the countries in Europe with the highest density of visitor attractions. Despite this abundance, many visitor attractions are not fully accessible to everyone, particularly to visitors with disabilities who sometimes are not eligible to ride due to safety concerns, yet when eligible generally still encounter numerous barriers. Accessibility of visitor attractions can be approached in various ways. However, because the focus often lies on operational and technical aspects (e.g., reducing stimuli at certain times of the day by turning o[ music, o[ering alternative wheelchair entrances), strategic and community-focused approaches are often overlooked. More importantly, there is also a lack of attention to the experience of visitors with disabilities. This becomes apparent from several studies from Joint Projects, where visitor attractions are being visited together with experts by experience with various disabilities. Nevertheless, experience is often being regarded as the 'core product' of the leisure sector. The right to meet, discover, develop, relax and thus enjoy this core product is hindered for many people with disabilities due to a lack of knowledge, inaccessibility (physical, digital, social, communicative as well as financial) and discrimination in society. Additionally, recreation entrepreneurs still face a significant gap in reaching the potential market of guests with disabilities and their networks. Thus, despite the numerous initiatives in the leisure sector aimed at improving accessibility on technical and operational fronts, often people with disabilities are still not being able to experience the same kind of enjoyment as those without. These observations form the pressing impetus for initiating the current research project, tapping into the numerous opportunities for learning, development and growth on making leisure offer more inclusive.Benefit to societyIn total, the current project approach comes with a number of enrichments in terms of both knowledge and methodology: a mixed-methods approach that allows for comparing data from different sources to obtain a more complete picture of the experience; a methodological co-design process that honours the 'nothing about us without us' principle; and benchmarking for a group (i.e., people with challenges on the auditory spectrum) that despite the size of its population has thus far mostly been overlooked.
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.
