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: Persons with an intellectual disability are at a higher risk of experiencing adversities. The concept of resilience offers promising insights into facilitating personal growth after adversity. The current study aims at providing an overview of the current research on resilience and the way this can contribute to quality of life in people with intellectual disability. Method: A literature review was conducted in the databases PsycINFO and Web of Science. To evaluate the quality of the studies, the Mixed Method Appraisal Tool (MMAT) was used. Results: The themes, autonomy, self-acceptance and physical health, were identified as internal sources of resilience. External sources of resilience can be found within the social network and daily activities. Conclusion: The current overview shows promising results to address resilience in adults with intellectual disability. More research is needed to identify the full range of resiliency factors.
In this paper, I propose an affective-formalist reading of what I call the affective affordances of disability; the way in which the representation of disability is able to move us. Through a comparative reading of two artworks, Michelangelo's David and Berlinde de Bruyckere's Into One-another Ill, to P.P.P., this paper explores the relationship between how reading for form in the mimetic representation of disability informs how we are affected by it. Concurrently, it explores how affect, conceived as a visceral force that moves through and impresses on bodies, can be generated through the way in which disabled bodies are represented in art. LinkedIn: https://www.linkedin.com/in/andrieshiskes/
Horse riding falls under the “Sport for Life” disciplines, where a long-term equestrian development can provide a clear pathway of developmental stages to help individuals, inclusive of those with a disability, to pursue their goals in sport and physical activity, providing long-term health benefits. However, the biomechanical interaction between horse and (disabled) rider is not wholly understood, leaving challenges and opportunities for the horse riding sport. Therefore, the purpose of this KIEM project is to start an interdisciplinary collaboration between parties interested in integrating existing knowledge on horse and (disabled) rider interaction with any novel insights to be gained from analysing recently collected sensor data using the EquiMoves™ system. EquiMoves is based on the state-of-the-art inertial- and orientational-sensor system ProMove-mini from Inertia Technology B.V., a partner in this proposal. On the basis of analysing previously collected data, machine learning algorithms will be selected for implementation in existing or modified EquiMoves sensor hardware and software solutions. Target applications and follow-ups include: - Improving horse and (disabled) rider interaction for riders of all skill levels; - Objective evidence-based classification system for competitive grading of disabled riders in Para Dressage events; - Identifying biomechanical irregularities for detecting and/or preventing injuries of horses. Topic-wise, the project is connected to “Smart Technologies and Materials”, “High Tech Systems & Materials” and “Digital key technologies”. The core consortium of Saxion University of Applied Sciences, Rosmark Consultancy and Inertia Technology will receive feedback to project progress and outcomes from a panel of international experts (Utrecht University, Sport Horse Health Plan, University of Central Lancashire, Swedish University of Agricultural Sciences), combining a strong mix of expertise on horse and rider biomechanics, veterinary medicine, sensor hardware, data analysis and AI/machine learning algorithm development and implementation, all together presenting a solid collaborative base for derived RAAK-mkb, -publiek and/or -PRO follow-up projects.
Low back pain is the leading cause of disability worldwide and a significant contributor to work incapacity. Although effective therapeutic options are scarce, exercises supervised by a physiotherapist have shown to be effective. However, the effects found in research studies tend to be small, likely due to the heterogeneous nature of patients' complaints and movement limitations. Personalized treatment is necessary as a 'one-size-fits-all' approach is not sufficient. High-tech solutions consisting of motions sensors supported by artificial intelligence will facilitate physiotherapists to achieve this goal. To date, physiotherapists use questionnaires and physical examinations, which provide subjective results and therefore limited support for treatment decisions. Objective measurement data obtained by motion sensors can help to determine abnormal movement patterns. This information may be crucial in evaluating the prognosis and designing the physiotherapy treatment plan. The proposed study is a small cohort study (n=30) that involves low back pain patients visiting a physiotherapist and performing simple movement tasks such as walking and repeated forward bending. The movements will be recorded using sensors that estimate orientation from accelerations, angular velocities and magnetometer data. Participants complete questionnaires about their pain and functioning before and after treatment. Artificial analysis techniques will be used to link the sensor and questionnaire data to identify clinically relevant subgroups based on movement patterns, and to determine if there are differences in prognosis between these subgroups that serve as a starting point of personalized treatments. This pilot study aims to investigate the potential benefits of using motion sensors to personalize the treatment of low back pain. It serves as a foundation for future research into the use of motion sensors in the treatment of low back pain and other musculoskeletal or neurological movement disorders.
Along with the rapidly growing number of disabled people participating in competitive sports, there is an increased need for (para)medical support in disability sports. Disabled athletes experience differences in body composition, metabolism, training load and habitual activity patterns compared with non-disabled athletes. Moreover, it has been suggested that the well-recognized athlete triad, and low energy availability and low bone mineral density in particular, is even a greater challenge in disabled athletes. Therefore, it is not surprising that sport nutritionists of disabled athletes have expressed an urgency for increased knowledge and insights on the nutritional demands of this group. This project aims to investigate energy expenditure, dietary intake, body composition and bone health of disabled athletes, ultimately leading to nutritional guidelines that promote health and optimal sports performance for this unique population. For this purpose, we will conduct a series of studies and implementation activities that are inter-related and build on the latest insights from sports practice, technology and science. Our international consortium is highly qualified to achieve this goal. It consists of knowledge institutes including world-leading experts in sport and nutrition research, complemented with practical insights from nutritionists working with disabled athletes and the involvement of athletes and teams through the Dutch and Norwegian Olympic committees. The international collaboration, which is a clear strength of this project, is not only focused on research, but also on the optimization of professional practice and educational activities. In this regard, the outcomes of this project will be directly available for practical use by the (para)medical staff working with disabled athletes, and will be extensively communicated to sport teams to ensure that the new insights are directly embedded into daily practice. The project outcomes will also be incorporated in educational activities for dietetics and sport and exercise students, thereby increasing knowledge of future practitioners.
