C1. New priorities in paediatric research
C2. To participate or not to participate: that is the challenge! Why and how to promote meaningful participation of children and young adults with disabilities?
C3. Behavior change towards a healthy lifestyle: needs more than just an advice
C4. Innovative interventions to support informal caregivers
C5. Working towards healthy living in patients with chronic pain: A stepped care approach
C6. The role of rehabilitation in the changing world of SMA
C7. Gait analysis and adaptations; using new ideas to tackle old problems in gait classification and training
C8. Handcycling: the way to go from a physiological and biomechanical perspective
C1. Workshop: New priorities in paediatric research
Excellent research starts with excellent research questions. In order to be excellent, a research question must arise from the desire to improve the interventions, therapies or daily lives of patients and persons with a disability. But who can decide what are the most urgent topics, and where the need for improvement is greatest? In the past, in general researchers decided on the research topics and focus and, unintentionally, have tended to pursue their perceived priorities – which may not be the same as those of patients and families. In recent years the identification and prioritization of research topics have changed. Both clinicians and patients contributed to the “VRA Kennisagenda”, whereas parents of children in pediatric rehabilitation developed a top 10 of research priorities; Research Agenda Pediatric Rehabilitation (“Onderzoeksagenda Kinderrevalidatie”). In the Kennisagenda and Onderzoeksagenda Kinderrevalidatie, patients, parents and doctors together describe the problems they perceive as most urgent. In this workshop we will present and discuss the Onderzoeksagenda Kinderrevalidatie and the VRA Kennisagenda, including the methods through which they were developed. The second half of the workshop is an interactive session discussing next steps, including questions like: how can we come from priority lists to excellent research? How can we join forces in this effort? And how can we ensure that excellent research does indeed lead to interventions that minimize our most pressing problems?
Chair: Martijn Klem
Speakers: Martijn Klem, Marjolijn Ketelaar, Karen van Meeteren, Minke Verdonk, Jeanine Voorman
- Introduction: the merits of identifying research priorities together - Martijn Klem MSc, director BOSK, Utrecht.
- Developing the “Onderzoeksagenda Kinderrevalidatie” - Marjolijn Ketelaar, De Hoogstraat Rehabilitation and UMC Utrecht, Netherlands
- Parental priorities: presentation of the “Onderzoeksagenda Kinderrevalidatie” - Karen van Meeteren and Minke Verdonk
- Joined forces from a doctor’s perspective: the Onderzoeksagenda and the VRA Kennisagenda: Jeanine Voorman, physician in Rehabilitation Medicine, University Medical Center Utrecht, Utrecht, Netherlands
- From research priorities to real-life answers: interactive session on the question how doctors, patients and parents can benefit from the research that the Kennisagenda and Onderzoeksagenda will bring about - Martijn Klem
C2. Mini-symposium: To participate or not to participate: that is the challenge! Why and how to promote meaningful participation of children and young adults with disabilities?
Participation of children, youth and transition-age young adults is vital for the development of physical, psychological and social emotional skills, competences and well-being, the shaping of identity and subsequently a major determinant of healthy living and future outcome. Consequences of a rehabilitation diagnosis often result in restrictions in participation particularly when compared to peers without disabilities. Research in paediatric rehabilitation mainly focussed on physical and cognitive outcomes (body functions and structure) and their determinants. More recently studies also focus on psychosocial outcome, including activities, participation and personal /environmental factors. Moreover, development and implementation of both assessments and interventions including programs and policies to promote meaningful participation children and youth in rehabilitation. The aim should be to decrease the impact of a rehabilitation diagnosis on participation of youth and their families. The mini-symposium ‘Participation’ brings together different experts from the field of paediatric rehabilitation and research to share perspectives and experiences with professionals working in the field.
- The objectives of this mini-symposium are to present and discuss
- Participation in pediatric rehabilitation
- Scientific support in selecting outcome measures
- First results of a multicenter study in pediatric rehabilitation
- Development and evidence family interventions
- Joined challenge and agenda
Chair: Arend de Kloet
Speakers: Jan Willem Gorter, Arend de Kloet, Caroline van Heugten, Frederike van Markus, Barbara Piskur
- General introduction - Arend de Kloet MSc PhD, associated professor The Hague University of applied sciences and Sophia Rehabilitation Center, Den Haag, Netherlands
- Participation as means and an outcome in pediatric rehabilitation - Prof. Jan Willem Gorter MD PhD, physiatrist, School of Rehabilitation Science at McMaster University, Hamilton, Canada
- Systematic review of instruments for measuring participation in children with acquired brain injury – Prof. Caroline van Heugten PhD, neuro psychologist, Maastricht university, Maastricht, Netherlands
- Meedoen! Results of a Dutch multi center study about participation for children with TBI - Frederike van Markus MD, physiatrist, PhD candidate, Sophia Rehabilitation Center, Den Haag, Netherlands
- Participation and parents - Barbara Piškur PhD, occupational therapist, Zuyd University, Heerlen, Netherlands
- Discussion about joined challenges and agenda.
C3. Mini-symposium: Behavior change towards a healthy lifestyle: needs more than just an advice
A growing volume of evidence shows that people with a chronic disorder have poor fitness, inactive lifestyles, and unfavorable body composition. Given the detrimental impact on fatigue, health, participation, and quality of life, rehabilitation treatment should strongly focus on changing behavior towards a healthy lifestyle. This requires comprehensive and evidence-based lifestyle programs, tailored to the individual patient, and comprising fitness training and coaching towards optimal physical activity and diet.
Scientific research by Erasmus MC and Rijndam Rehabilitation in Rotterdam, in collaboration with several Dutch rehabilitation centers, was the basis for developing such lifestyle programs. These programs are now offered in Rijndam Rehabilitation as regular care for people with a chronic disorder such as spinal cord injury, cerebral palsy and acquired brain injury.
Aim of this mini-symposium is to share knowledge and our experiences regarding these lifestyle programs. The mini-symposium offers a diverse program in an interactive environment and is relevant for therapists, physicians, and researchers.
Chair: Rita van den Berg-Emons
Speakers: Rita van den Berg-Emons1, Wilma van der Slot2, Rutger Osterthun2, Rogier Broeksteeg2
• Scientific knowledge on fitness, physical activity, sedentary behavior, and body composition in people with cerebral palsy and spinal cord injury
• Promising techniques for behavioral change
• Scientific research on lifestyle programs in chronic disorders
o Learn 2 Move (cerebral palsy)
o Act-Active (spinal cord injury)
2. Lifestyle programs in Rijndam Rehabilitation
• Lessons learned from implementation
o Brain injury
o Wheelchair-users (spinal cord injury, amputation)
3. Measuring resting metabolic rate
• Why important?
4. Experiences of patients participating in the Rijndam lifestyle programs
5. Panel discussion
C4. Mini-symposium: Innovative interventions to support informal caregivers
Family members who provide support for patients in the rehabilitation phase may experience difficulties in aspects of caring, high levels of burden and impaired quality of life The majority of existing interventions focus primarily on the needs of patients, not on the needs of the significant others (usually the partner but can be everyone who is important in one’s well-being). Empowering both patients and significant others as part of rehabilitation treatment may help to reduce this gap, reduce distress and enhance participation in daily activities. At the Center of Excellence for Rehabilitation Medicine Utrecht different intervention studies are conducted with the aim to support informal caregivers (ALS Naasten support, POWER-study, CARE4Carer, CommuniCare).
ALS Naasten Support
Informal caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) or Progressive Muscular Atrophy (PMA) face stressful demands due to severe impairments and prospect of early death of the patients they care for. A psychosocial support program aimed at enhancing feelings of control over caregiving tasks and reducing psychological distress was developed to support these caregivers. The program is based on Acceptance and Commitment Therapy and consists of 1 face-to-face contact, 6 online guided modules and 1 telephone contact. The effects of the program are investigated in a randomized controlled trial. The program and preliminary results will be presented.
The POWER-study is a multicentre controlled trial carried out in twelve Dutch rehabilitation centres. Over 300 clinically admitted patients participate (≥18 years, diagnose: acquired brain injury, spinal cord injury or leg amputation) as well as their significant others. During 3 family group conferences (FGC’s), supported by the social worker, the patient, significant other and their social network, will be stimulated in collaboration, to set up participation goals, determine the needed help, and make a concrete action plan. Empowerment as the primary outcome is operationalized as self-efficacy and participation. The implementation of FGC and preliminary results will be presented.
CARE4Carer is a blended care intervention for partners of patients with acquired brain injury. The intervention consists of a nine-session web-based support program and two face-to-face consultations with a social worker. The support program, called Brain Injury - Moving forward together (in Dutch: “Hersenletsel – hoe samen verder?”), contains evidence-based support strategies such as psychoeducation, skill building, problem solving, and improving feelings of mastery. The effects of the intervention are investigated in a randomized controlled trial. The CARE4Carer intervention and preliminary results will be presented.
Of all people who suffer a stroke, about a third is diagnosed with aphasia. Communication disorders can have serious consequences. Persons with aphasia (PWA) have higher risks for depression and for receiving inadequate care in health care settings. Little is known about the needs and wishes of proxies concerning communication with PWA. The CommuniCare- project is a multicenter project aimed at investigating needs and wishes of health care professionals and proxies, to develop an intervention aimed at improving communication between health care professionals, PWA and their proxies. The CommuniCare intervention will be implemented in health care settings where process evaluations and outcome measurements will be carried out. The intervention and preliminary results will be presented.
Chair: Anne Visser-Meily, Hoogleraar Revalidatiegeneeskunde, Kenniscentrum Revalidatiegeneeskunde UMC Utrecht en De Hoogstraat Revalidatie
Speakers: Jessica De Wit1, Chantal Hillebregt1, Eline Scholte1, Vincent Cox1, Maren van Rijssen,Anne Visser-Meily2
- Introduction: informal caregiving in rehabilitation - Anne Visser-Meily, Hoogleraar Revalidatiegeneeskunde, Kenniscentrum Revalidatiegeneeskunde UMC Utrecht en De Hoogstraat Revalidatie
- A blended psychosocial support program for partners of patients with Amyotrophic Lateral Sclerosis and Progressive Muscular Atrophy - Jessica de Wit, Center of Excellence for Rehabilitation Medicine Utrecht, UTRECHT, Netherlands
- POWER- study: The implementation of Family Group Conferences among high risk patients of chronic disability and their significant others - Chantal Hillebregt and Eline Scholten, Center of Excellence for Rehabilitation Medicine Utrecht, UTRECHT, Netherlands
- The CARE4Carer blended intervention for partners of patients with acquired brain injury (Vincent Cox) Center of Excellence for Rehabilitation Medicine Utrecht, UTRECHT, Netherlands
- Conclusion - Anne Visser-Meily, Hoogleraar Revalidatiegeneeskunde, Kenniscentrum Revalidatiegeneeskunde UMC Utrecht en De Hoogstraat Revalidatie
C5. Mini-symposium: Working towards healthy living in patients with chronic pain: A stepped care approach
A healthy lifestyle is crucial for everyone. But becoming more active can be a challenge for those confronted with disability, such as related to chronic pain. For this reason, it is important to provide every patient the optimal support to change behavior towards a healthy lifestyle and his/her desired level of quality of life. In this context, the ability to participate again in activities as work and sports, are important elements for most patients with chronic pain and for this reason, often important goals to focus upon during rehabilitation. But what works for whom in order to change activity related behavior in patients with chronic pain? How can we best select the optimal treatment for every patient? Nowadays, collaboration between health-professionals in primary, secondary and tertiary care seems essential in order to ensure both quality and costs of chronic pain rehabilitation care. In this mini-symposium we will discuss important elements in rehabilitation towards regaining a healthy active lifestyle with pain. In addition, we will focus on new developments in the organization of a transmural model of rehabilitation care that supports regaining an active lifestyle for patients with chronic pain.
Jeanine Verbunt Professor and consultant in rehabilitation medicine Maastricht-university en Adelante zorggroep
Speakers: Loes Swaan, Michiel Reneman, Ben Evers, Cynthia Lamper
- What works for whom?: Multidimensional analysis in patients with complex pain problems - Loes Swaan - Rijndam Rotterdam
- Back to work: Rehabilitation towards and by means of work participation - Michiel Reneman, UMCG Groningen
- Back to sports: The challenge of moving with pain - Ben Evers, UMCG Groningen
- The network pain rehabilitation Limburg; an example of a stepped care transmural network - Cynthia Lamper, Adelante/UM Maastricht
C6. Workshop: The role of rehabilitation in the changing world of SMA
Spinal muscular atrophy (SMA) is a rare neuromuscular disoreder. The disorder is caused by a genetic defect in the SMN1 gene. Spinal muscular atrophy manifests in various degrees of severity, which all have in common progressive muscle wasting and mobility impairment. Lifetime rehabilitation care is therefore necessary for optimal functioning. In December 2016 the antisense oligonucleotide nusinersen (Spinraza) was approved for the treatment for children and adults with SMA. This symbolizes the start of a new era of treatment possibilities resulting in changing prognosis and outcomes. New treatments call for a new approach in rehabilitation care for SMA patients. The new consensus statement on SMA standard of care describes that there has been increasing evidence that a proactive approach from rehabilitation perspective may influence trajectories of progression. In this workshop we will discuss different topics in care for children with SMA, based on the new consensus statement as well as experiences in the SMA expertise centre.
Chair: Marjolein Verhoef, PhD, MD in Pediatric Rehabilitation Medicine, Wilhelmina Kinderziekenhuis/UMCUtrecht
Marjolein Verhoef, Inge Cuppen, Danny van der Woude, Marise Heul, van der, Maarten Fischer
University Medical Center Utrecht, Netherlands
- General introduction - Marjolein Verhoef MD PhD in Pediatric Rehabilitation Medicine University Medical Center Utrecht, Netherlands
- Neurological background SMA and the development of different drug treatment options, now and in the future - Inge Cuppen MD PhD, Pediatrician-Neurologist, University Medical Center Utrecht, Netherlands
- Motor development in SMA and effects of Spinraza; practical consequences for physical therapy - Danny van der Woude , Pediatric Physical Therapist, University Medical Center Utrecht, Netherlands
- Feeding and swallowing problems in children and adults with different types of SMA: insight and advises for practice - Marise van der Heul MSc., Speech Language Therapist, University Medical Center Utrecht, Netherlands
- Additional problems as respiratory problems, nutritional status, spine deformity and contractures, as well as management opportunities - Marjolein Verhoef
- Quality of life and psychosocial care for patients, caregivers and parents; support and needs - Maarten Fischer MSc, Psychologist, University Medical Center Utrecht, Netherlands
- Finally the tips an tops of the network rehabilitation care for children and adults with SMA in the Netherlands can be discussed
C7. Mini-symposium: Gait analysis and adaptations; using new ideas to tackle old problems in gait classification and training
Effective and efficient gait, without pain or fatigue, is closely associated with good functioning in a daily living environment. Poor balance control and reduced gait speed together account for a major reduction in the quality of life and are predispositions for many chronic health problems. In this regard, gait analysis and interpreting gait adaptations has been of prime importance for more that 20 years for both practitioners as well as scientists in the field of human movement and rehabilitation sciences. Nowadays, with the help of intelligent equipment and advanced computer algorithms, new possibilities arise for both primary and secondary prevention of mobility related diseases as well as for the development of new interventions within the area of rehabilitation. To understand how rehabilitation medicine can make use of these innovations to prevent disabilities, or, when necessary, try to recover from impairments, rehabilitation specialists have to gain insights into the interaction between patients’ motor learning abilities and the techniques that are available in this rapid developing multidisciplinary area. During this minisymposium we will discuss how assessments and exercises, in challenging conditions, on an instrumented treadmill, can be of help in a clinical setting to improve (pathological) gait patterns. We discuss some of the benefits but also some of the disadvantages of these techniques and how they relate to motor learning, cognitive functioning, brain activity and performance in able-bodied persons, to benefit clinical decision making.
Chair: Helco van Keeken
Speakers: Helco van Keeken, Yuhan Zhou, Christian Greve, Tom Buurke, Iris Hagoort, Sylvana Weiland
- Introduction - Helco van Keeken PhD, assistant professor, University of Groningen / UMCG / Center for Human Movement Sciences, The Netherlands
- Machine learning and classification of gait, its relevance for the clinical setting - Yuhan Zhou, University of Groningen, UMCG, Center for Human Movement Sciences, Groningen, Netherlands
- The role of musculoskeletal modelling in clinical decision making - Christian Greve, University of Groningen, UMCG, Center for Human Movement Sciences, Groningen, Netherlands
- The margins of stability during motor learning - Tom Buurke, University of Groningen, UMCG, Center for Human Movement Sciences, Groningen, Netherlands
- Mapping brain activity during motor learning in gait training - Iris Hagoort, University of Groningen, UMCG, Center for Human Movement Sciences, Groningen, Netherlands
- Bilateral effects of assymetrical movement guidance in the Lokomat - Sylvana Weiland, University of Groningen, UMCG, Center for Human Movement Sciences, Groningen, Netherlands
- Final thoughts - Helco van Keeken
C8. Minisymposium: Handcycling: the way to go from a physiological and biomechanical perspective
Handcycling is getting more and more popular in the Netherlands for mobility and sports. Handcycling is more energy efficient and leads to less shoulder load compared to wheelchair propulsion. Therefore, handcycling is stimulated during and after rehabilitation for a healthy life for people with a lower limb disability. One of the initiatives to stimulate a healthy lifestyle via handcycling is the HandbikeBattle. The HandbikeBattle is a handcycling mountain race among 12 Dutch rehabilitation centers with teams of ex-patients. The goal of this HandbikeBattle is to challenge the ex-patients to train and to become mentally and physically fit by climbing this mountain in the handbike. However, it is important for this race but also for daily life to have an optimal training program and to optimize handcycling equipment to prevent overuse injuries. That means that we need more information on handcycling test protocols, (monitoring of) handcycling training programs and how to optimize the handcycle-user configuration. The objective of this mini-symposium is to give the state-of-the-art regarding optimizing handcycling from a physiological and biomechanical perspective.
Chair: Sonja de Groot
Speakers: Sonja de Groot, Ingrid Kouwijzer, Vicky Tolfrey, Cassandra Kraaijenbrink, Ursina Arnet
Handcycling: a short introduction - Sonja de Groot, PhD,
Amsterdam Rehabilitation Research Center | Reade, Amsterdam, The Netherlands; University of Groningen, University Medical Center Groningen, Center for Human Movement Sciences, Groningen, The Netherlands;
The HandbikeBattle study: Testing & training - Ingrid Kouwijzer, PhD student HandbikeBattle
Research & Development, Heliomare, Wijk aan Zee; Amsterdam Rehabilitation Research Center | Reade, Amsterdam, The Netherlands; University of Groningen, University Medical Center Groningen, Center for Human Movement Sciences, Groningen, The Netherlands;
Optimization of handcycling for elite sports: Training and technical guidance - Vicky Tolfrey, PhD
The Peter Harrison Centre for Disability Sport, School of Sport, Exercise and Health Sciences, Loughborough University, Loughborough, UK
Biomechanics of handycling propulsion technique - Cassandra Kraaijenbrink, PhD student
Department of Movement Science, Institute of Sport Sciences, University of Münster, Münster, North Rhine-Westphalia, Germany; Center for Human Movement Sciences, University Medical Center Groningen, University of Groningen, Groningen, Groningen, the Netherlands
Shoulder load during ADL handcycling compared to manual wheelchair propulsion - Ursina Arnet, PhD
Swiss Paraplegic Research, Nottwil, Switzerland;