“Assessment is an art and we all need to become better observers of our patients,” said Professor Bloem. In his opinion, medicine has a lot to learn from the world of the arts. Clinicians need to report what they really see – not what they think they see!
Clinicians need to report what they really see – not what they think they see!
Consider the design of healthcare services for patients with Parkinson’s disease. In many ways, they couldn’t have been designed worse as the majority of assessment is done in the clinic. This has two major associated problems: Firstly, patients usually drive to their appointments despite it being well known that their driving abilities are impaired if not downright dangerous. And once they reach the clinic all that is recorded is a snapshot of their lives - lives which are otherwise much more complex at home.
Indeed, patients practice the tests they expect to be given, even while they are in the waiting room, or even take extra meds in preparation for the hospital visit because they want to appear well for their physician. In the clinic, the moment a physician looks at gait freezing, it’s gone, frustratingly! Patient recall of their fall and freezing history is patchy at best and in a five minute consultation it’s impossible to see the complex fluctuation in symptoms and their clinical impact between ON and OFF times. If physicians want to see their patients’ problems, which they do, then the clinic is the wrong place.
Technology may have the solution. “I’m not saying that patients should be wired up like Christmas trees, but wearable sensors offer great promise in overcoming this challenge,” Professor Bloem suggested.
“I’m not saying that patients should be wired up like Christmas trees, but wearable sensors offer great promise in overcoming this challenge,” Professor Bloem suggested.
For example, wall-mounted cameras that track patients at home could be useful in the analysis of gain, freezing and falls. In an ideal world, patients could be sent home wearing sensors or to cameras that feed-back to a dashboard that would indicate, for example, when levodopa should be taken or when the patient needed to come to the clinic.
Philips has developed a fall detector. While the algorithm was validated in healthy subjects, which might be questionable, the detector itself is connected to a help desk. Should a patient not arise after 20-30 seconds, they receive a telephone call asking them if they require assistance to get up even if they haven’t pressed the fall alarm. Currently, a 700,000 patient data set of documented falls is available for analysis. What can be seen by comparing self-reported falls on devices with and without fall detectors is that falls are significantly underreported by patients.
Comparing self-reported falls on devices with and without fall detectors shows definitely that falls are underreported by patients
“And if you look at the twelve or so conditions represented in this data set it can be seen that Parkinson’s disease is the Number 1 falling disease in the world,” Professor Bloem reported. Although this study is only of those choosing to use the devise, it’s an example of how an unobtrusive piece of technology could help clinicians better observe their patients’ daily lives.
Parkinson’s disease is the Number 1 falling disease in the world
While there is no accepted program that specifically addresses the risk profile in PD, van der Merck et al. have developed consensus-based clinical practice recommendations that systematically address potential fall risk factors in PD. These include an overview of generic (age-related) and PD-specific factors and for each the best method of ascertainment, who needs be involved in assessment and treatment and relevant suggestion for interventions.1 Using this paper looks likely to be a good starting point for the devising of personalized treatment for patients. Similarly, a practical approach to navigating the management of gait freezing has been published.2
Most freezing is levodopa responsive. Typically, higher doses are needed to treat gait freezing. But there are occasions when patients sporadically get worse on dopaminergic medication and there are those who seem resistant to dopaminergic medication. What can be done?
Exercise really works as a symptomatic treatment in PD
Dr Bloem’s group has discovered a way of getting patients to adhere to home-based exercise regimens. Their program is called Park-in-Shape.3 Based on the observation that some patients have improved gait after exercise while others can still cycle even when unable to walk steadily, static bikes were installed in PD patient homes . These bikes were connected to the University to allow researchers to monitor patients’ efforts and to allow the researchers to adjust the bikes to make exercise more demanding. Games playing both before and during the allotted 3 times weekly sessions was encouraged and social media was also engaged between volunteers.
“The remarkable thing is we asked them to exercise with gaming to 70% of their maximum capacity, three times a week for 6 months – and they did it!” Dr Bloem said, “And the improvements we saw were equivalent to a drug-based intervention.”
“The remarkable thing is we asked them to exercise with gaming to 70% of their maximum capacity, three times a week for 6 months – and they did it!” Dr Bloem said, “And the improvements we saw were equivalent to a drug-based intervention.” A remarkable finding, indeed!