DCRM 2023

This thesis investigates the utilization of telehealth in multidisciplinary care for people with Motor Neuron Disease (MND) and the development of strategies for remote patient monitoring. Despite telehealth’s proven potential to improve clinical outcomes and patient self-management, its integration in MND care remains limited. This thesis shows that telehealth, including remote interactions with multidisciplinary teams, benefits MND patients across different disease stages, enhancing care continuity and accessibility, particularly when physical travel is challenging.

Personalized care, adaptable to patients’ evolving needs, is a focus for telehealth services. Implementation barriers include costs, reimbursement, patient attitudes, and healthcare professionals’ acceptance. Solutions involve centralizing telehealth platforms, ensuring proper reimbursement, and fostering positivity among healthcare professionals and patients.

The need for remote monitoring of respiratory function is emphasized, highlighting vital capacity and dyspnea symptoms as suitable outcome measures. Optimizing adherence to remote monitoring is promoted by personalized feedback and user-friendly devices, while proper implementation of these remote outcome measures are facilitated by developing standardized assessments and a centralized telehealth platform. Furthermore, collaboration among healthcare institutions, adherence to implementation frameworks, and cost-effectiveness evaluations are recommended for widespread telehealth adoption.
Furthermore, this thesis underscores the importance of training the next generation of healthcare professionals in telehealth and personalized care, driving successful healthcare digital transformation. This research offers valuable insights into enhancing MND care through telehealth and remote monitoring, improving patient outcomes, and ensuring equitable care access.

Jochem Helleman started his academic journey in 2012 when he started the Bachelor Human Movement Sciences at the Vrije Universiteit Amsterdam, and obtained his master’s degree in Human Movement Sciences in 2016. During his masters he conducted a research study on the mobility of wheelchair basketball players, which resulted in a published research paper and his first co-authorship. In 2017 he started his PhD at the University Medical Center in Utrecht on the project ‘ALS Home-monitoring and Coaching’. During his PhD Jochem presented his research on national and international conferences, as well as open days that were organized for and attended by patients with ALS and their caregivers. Currently Jochem is working as a Product Owner at Heart for Health where he works together with a team of developers, testers and consultants, aimed at developing mobile applications for home-monitoring of cardiology and diabetes patients.

Duchenne muscular dystrophy: Future perspectives

Duchenne muscular dystrophy (DMD) is an X-linked, progressive neuromuscular disorder involving many bodily functions and in which the disease progression is constantly changing due to new medical developments. The disease occurs mainly in men, but women can also have symptoms to a greater or lesser extent. Increasing life expectancy has created a new, relatively unknown population of adults with Duchenne muscular dystrophy. In this thesis we aimed to understand more of the challenges people with Duchenne Muscular Dystrophy face during disease progression and the impact on daily activities and participation. The following topics were covered: symptoms in different disease stages, women with dystrophinopathy, weight progression and muscle shortening. In addition, this dissertation describes how care in the Netherlands meets international standards of care and existing interventions (the use of hand splints and foot surgery) were examined.

Due to this thesis, clinicians have more tools to support persons with DMD during their life course en social participation.

Saskia Houwen is a paediatric rehabilitation physician at Amalia Children’s Hospital, Radboudumc. Her clinical work is focused on children with neuromuscular diseases, and on adults with a dystrophinopathy. She is also PI on several clinical trials for children with Duchenne Muscular Dystrophy. She defended het PhD thesis on the 27th of June 2023. Besides her clinical and research tasks, she is a board member of Duchenne Center of the Netherlands and the Neuromuscular task force of the Dutch rehabilitation association. At last, she is medical advisor of the patient advocacy group for people with dystrophies. She lives in Nijmegen with het husband and three wonderful sons.

Task-specific training methods to improve the upper limb function in stroke survivors

The beds in the rehabilitation center are full and the schedules of the therapists are overloaded. Sounds familiar? Therefore, we need to find efficient ways to provide training to stroke patients. Task-specific training is necessary to improve the upper limb function after stroke, fortunately there are different ways to incorporate this in training. This thesis describes two methods of providing task-specific training, group training and home training, to train the upper limb function with minimal therapist resources.

We developed a circuit class group training involving activities of daily life. The training resulted in a lower workload for therapists and a practical training for patients. When a patient returns home, training must continue to prevent non-use of the arm. Therefore, a home-based training program using an assistive device and telerehabilitation system was investigated. Patients significantly improved their upper limb function, improvement was even retained six months after training. These results showed the added benefit of assistive device training. Patients found this way of training enjoyable, however several device flaws were encountered.

We showed that group training and assistive device training result in clinically meaningful improvements in upper limb function after stroke and can therefore be a useful addition to rehabilitation programs. The thesis can be found here.

Samantha Rozevink (19-09-1995) completed the bachelor and research master Human Movement Sciences at the Vrije Universiteit in Amsterdam between 2013 and 2018. In January of 2019 she started as a junior researcher on the MERLIN project at the University Medical Center in Groningen at the department of Rehabilitation Medicine. After 1,5 years, this function was converted to a full PhD position where she continued to investigate different methods to provide task-specific training to stroke survivors to improve their upper limb function. She defended her thesis on the 22nd of March 2023, at the Rijksuniversiteit Groningen. In January 2023, she started her post-doc at the department of Human Movement Sciences in Groningen, where she focusses on using virtual reality for the training of upper limb myoelectric prosthesis control. Furthermore, she assists in teaching the 1st year bachelor course motor control at the department.