Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents’ perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were “difficulties in keeping up with peers” and “being and feeling different from peers”. Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.
MULTIFILE
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.
Objective: To investigate the effects of a school-based once-a-week sports program on physical fitness, physical activity, and cardiometabolic health in children and adolescents with a physical disability. Methods: This controlled clinical trial included 71 children and adolescents from four schools for special education [mean age 13.7 (2.9) years, range 8–19, 55% boys]. Participants had various chronic health conditions including cerebral palsy (37%), other neuromuscular (44%), metabolic (8%), musculoskeletal (7%), and cardiovascular (4%) disorders. Before recruitment and based on the presence of school-based sports, schools were assigned as sport or control group. School-based sports were initiated and provided by motivated experienced physical educators. The sport group (n = 31) participated in a once-a-week school-based sports program for 6 months, which included team sports. The control group (n = 40) followed the regular curriculum. Anaerobic performance was assessed by the Muscle Power Sprint Test. Secondary outcome measures included aerobic performance, VO2 peak, strength, physical activity, blood pressure, arterial stiffness, body composition, and the metabolic profile. Results: A significant improvement of 16% in favor of the sport group was found for anaerobic performance (p = 0.003). In addition, the sport group lost 2.8% more fat mass compared to the control group (p = 0.007). No changes were found for aerobic performance, VO2 peak, physical activity, blood pressure, arterial stiffness, and the metabolic profile. Conclusion: Anaerobic performance and fat mass improved following a school-based sports program. These effects are promising for long-term fitness and health promotion, because sports sessions at school eliminate certain barriers for sports participation and adding a once-a-week sports session showed already positive effects for 6 months.
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.
The clubfoot deformity is one of the most common congenital orthopaedic “conditions”. Worldwide approximately 100,000 children are born with unilateral or bilateral clubfoot every year. In the Netherlands the incidence is approximately 175 every year. This three dimensional deformity of the foot involves, equinus, varus, adductus, and cavus . Left untreated the clubfoot leads to deformity, functional disability and pain. Physical impairments of children with clubfoot might lead to limitations in activities and therefore impede a child’s participation. In clinical practice, the orthopaedic surgeon and physiotherapists are regularly consulted by (parents of) clubfoot patients for functional problems such as impaired walking and other daily activities. This does not only affect long-term and physical health of a child, it will also affect the development of social relationships and skills as well. Since walking is a main activity in children to be able to participate in daily life, our previous study (financially supported by SIA Raak Publiek) focussed on gait differences between children with clubfoot and controls. However, differences in gait characteristics do not necessarily lead to functional limitations and restricted participation. Therefore, providing insight in participation and a child’s performance in other activities than walking is necessary. Insight in a child’s participation will also indicate the functional outcome of the treatment, which on its turn could provide essential information concerning a possible relapse.. Early identification of a relapse is important since it could prevent the need for major surgical interventions. The occurrence of a relapse clubfoot will probably also lead to functional differences in the foot as well as problems during activity and participation. Therefore, the main focus of this study is the functional outcomes of physical activities and the characterisation of participation of children with clubfeet in daily activities of childhood.
