In December 2016, Parkinson’s UK produced a wonderful series of video explaining some of the basics of Parkinson’s disease. They are a really useful resources for folks who would like to better understand this condition, but are not really interested in the hard-core science. You can find them on Parkinson’s UK Youtube channel, but we present a couple of them here to give you a taster. Enjoy.
1. What is Parkinson’s disease?
2. How does the medication work?
3. How are future drugs developed?
1. An explanation of the clinical trial process:
2. The process of getting a drug from the lab bench to the market:
Here at the SoPD, we like our gadgets and new technology.
And we believe that there is enormous potential for people with Parkinson’s disease to benefit hugely even from some of the small technological advances that seem to be occurring on a day basis.
Today’s post will review a recent study that looked at tested the benefits of a smartphone application for people with Parkinson’s disease.
A schematic illustrating the limited monitoring of Parkinson’s. Source: Riggare
On her great blog, Swedish engineer and ‘proud mother’ Sara Riggare posted the image above to illustrate the ridiculous current situation regarding the standard monitoring of Parkinson’s disease.
As the schematic perfectly illustrates, in 2014 Sara spent 8,765 hours conducting ‘self care’. That is, she was applying her own knowledge and experience to managing her Parkinson’s disease. For just one hour in that year was her Parkinson’s actually being monitored by a medical clinician (8,766 being the number of hours in a year).
This is actually a very serious problem – for not only the Parkinson’s community – but anyone suffering from a long-term medical condition. How are they to gage their current situation on a day to day basis when they have such infrequent visits to their medical specialist?
And this is where technology can help.
But, before we begin:
FULL DISCLOSURE NO.1: the author of this blog is an author in the study that will be discussed (#ThisIsNotShamelessSelfPromotion).
FULL DISCLOSURE NO.2: We here at the SoPD are in no way benefitting from mentioning the study here. The company behind the product, umotif, has not asked us nor been contacted by us regarding this post (in fact, they are completely unaware that we are posting this). We are writing this post simply because we thought that it would be of interest to the wider Parkinson’s community. And yes, as other technology comes to along, we will bring it to you attention by posting about it here.
With all of that out of the way, the study is AMAZING!
Title: Using a smartphone based self-management platform to support medication adherence and clinical consultation in Parkinson’s disease: Results from the SMART-PD Randomised Controlled Trial v4.
Authors: Lakshminarayana R, Wang D, Burn D, Barker RA, Chaudhuri KR, Galtrey C, van Guzman N, Hellman B, Pal S, Stamford J, Steiger M, Stott SRW, Teo J, Barker RA, Wang E, Bloem BR, van der Eijk M, Rochester L, & Williams A
Journal: NPJ Parkinson’s disease (2017), 3, 2.
PMID: N/A (This article is OPEN ACCESS if you would like to read it)
The company behind the application approached various clinical research groups around the UK and proposed to run a study of their new product. The software had many features (including information about medication, a reminder alarm for when medication should be taken, tests/games, and links to other resources online).
A programmable reminder system for medication. Source: Nature
The primary focus of the software, however, was a flower-petal shaped motif that the participants could manipulate to indicate how they were feeling.
The umotif flower motif. Source: SalusDigital
Participants could drag each coloured petal in or out to indicate how they were feeling at a particular moment in time. The smaller the petal, the more lower the score. And each petal represented different aspects of daily life, for example the moon and stars (dark blue) petal allowed an indication of how one slept.
Each time the participant indicated their current status on the flower motif, the information was recorded and could be tracked over days, weeks, and months. This level of information allowed people to begin to see patterns in their own behaviour over time, with some people getting poorer sleep during the middle of the month for example. And different variables could be compared (such as sleep score with exercise score), providing users with a more dynamic idea of their situation over time.
Comparing scores between measures over time. Source: Nature
A total of 215 people with Parkinson’s disease were randomly assigned to either receive the application (106 subjects) or not (acting as a control subject; 109 subjects). Both groups were contacted by the investigators fours times during the 16 week trial and feedback was provided in addition to any changes in their treatment regimes.
72% of participants application group continued to use and engage with the application throughout the 16-week trial. By the end of the study, the application group demonstrated significantly improved adherence to their treatment regime when compared to the control group. Curiously, the application also significantly improved patients’ perception of quality of follow up consultations, demonstrating unexpected benefits.
And at the end of the study all of the control group participants in the study were allowed to begin using the application, while the application group continued to use it.
One interesting aspect of the study was the lack of interaction with technology by the target population. 180 people who were initially invited to take part in the study could not because they did not have smartphones (with iPhone/iPad or Android operating systems). So obviously there are opportunities for alternative approaches to this kind of tracking (other than a smartphone).
What does it all mean?
This smartphone application is a user friendly approach to tracking someone’s Parkinson’s over time, getting around the ‘lack of monitoring’ issue that concerns many in the community.
Umotif and Parkinson’s UK have kindly made this video about the study results so we might just sit back and let them explain what it all means and point out all of the benefits.
We are working on additional posts about wearable tech for Parkinson’s disease, which will be coming soon.
So stay tuned.
The banner for today’s post was sourced from ParkinsonsMovement
Gretschen Amphlet was a long-time resident of Cambridge (UK) who suffered from Parkinsons’s disease. Every year she is remembered in a memorial lecture in April.
This year, Prof Roger Barker of Cambridge University was asked to give the talk.
He is a Professor of Clinical Neuroscience at the University of Cambridge and an Honorary Consultant Neurologist at Addenbrooke’s Hospital in Cambridge. Prof |Barker conducts both lab-based and clinical research on Parkinson’s disease, co-ordinating large clinical studies such as the Transeuro cell transplantation trial currently being conducted.
His lecture was titled: Can stem cells deliver on their promise for Parkinson’s?
The event is organised by Parkinson’s UK.
It was a beautiful evening outside the auditorium at FitzWilliams college in Cambridge…
…and we were present in the lecture hall for the event. Parkinson’s UK filmed the lecture and that footage is available online (click here to watch it). We also offer a transcript of the lecture – to read the transcript, please click here.