Patients Know Best works with Radboud University Medical Centre to Improve Spasticity Management in Neurological Patients

Patients Know Best is being used today in an innovative project at Radboud University Medical Center (Radboudumc), The Netherlands, to manage chronic spasticity problems in patients caused by a stroke or by having a rare condition called Hereditary Spastic Paraplegia (HSP).

Hans Kerstens, the therapy specialist leading the project at Radboudumc hopes that working with PKB will stimulate shared decision-making between patient, and community and hospital-based professionals – and so improve patients’ wellbeing.

“Spasticity problems are treatable, but they’re not curable,” explains Kerstens. “People live with impairments for many years and it’s often very difficult for the patient to keep motivated with the exercise programs we give them because they don’t see a lot of change.  But if they don’t monitor their condition and keep up with their treatments – they can get significantly worse.”

“It’s really important for us that the patient and we have insight in the fluctuating course of the disease and that he or she takes the lead in their own healthcare management – this is what our work with Patients Know Best is all about,” he said.

Patients with spasticity problems are given Botuline toxine injections by Radboudumc every few months to decrease the influence of spasticity on their activities. But every patient is different and reacts to the drugs differently with some needing more regular injections than others.

The only way to find out if a patient is in need of an injection is by monitoring fluctuations in their condition – and the only one who can do this is the patient. For the doctors, physios, nurses and therapists treating them, this insight is crucial in decision-making. Kerstens explains:

“Getting the timing right for a patient’s injection is critical – but really hard to achieve. It’s vital that everyone involved in a patient’s treatment stays in close communication so we know when a patient needs their boost. But with so many professionals involved – that can be a challenge.”

Whilst the project is in its early stages, it is highly innovative in that it enables close collaboration between patients, community and hospital physio teams.

Physiotherapists local to the patient are far better placed to monitor changes in their condition day-to-day. Using PKB means that hospital teams can now access the same information as a patient’s local team meaning that everyone is better informed – and when people are better informed, care improves as a result. Kerstens continues:

“We had the idea that all parties involved in a patient’s treatment must have real-time information about the patient’s condition so we recognise the optimal time to administer the injections. We also wanted the patient to be the one who takes the lead in their own healthcare – they must be better supported to monitor themselves and know what to look out for.”

Kerstens has high ambitions for the project and sees that his work with PKB could be scaled to help more stroke and HSP patients – of which there are over 370,000 in The Netherlands – and then use that learning to help patients in other healthcare facilities and other patient groups with similar symptoms.  

“Patients tell us that getting their injections really helps to reduce pain and discomfort. Through working with Patients Know Best, we want to tailor patient care and ensure that patients receive their injections at the time they need them most. We know that this will help managing pain and improving quality of life.”

“We’re progressing in small steps at the moment, fine-tuning the system, but once we’re happy that it works well for a few patients then our plan is to scale up to a far larger group and investigate the effects. We also think the system could have other applications such as helping people living with multiple sclerosis,” he said.

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