Tackling non-motor symptoms with tech

Almost everyone with Parkinson’s experiences troubling non-motor symptoms but many do not report them and may be missing out on vital treatment and support. Could the solution lie in technology? Our researchers have been finding out.

Non-motor symptoms of Parkinson’s include a wide variety of issues including difficulties with memory and concentration, through to anxiety, bladder or bowel problems and sexual dysfunction. These symptoms are extremely common and can have a significant impact on quality of life but despite this, many non-motor symptoms go unreported and consequently untreated.

Why do non-motor symptoms go unreported?

In 2014, chartered psychologist Dr Catherine Hurt and her colleagues at City, University of London received a £116,000 grant from Parkinson’s UK to address this crucial issue. Their aim was to develop and test a new interactive digital approach to help empower people to seek help with non-motor symptoms.

“The first step for us was to conduct in-depth interviews with people with the condition to gain a better understanding of what is preventing them raising these issues,” says Catherine.
“When we analysed the results we found that people find some non-motor symptoms more difficult to raise than others, and we were also able to identify some of the main reasons why.”
Symptoms people with Parkinson’s commonly do not report (in blue) and the reasons why

Developing an interactive website

“Once we had identified they key symptoms and barriers we developed an interactive website with tailored information, tools and resources to address these specific issues. And the next step was to test whether this approach is helpful for people with the condition.”

35 people with Parkinson’s were recruited to the study and received access to the website. The first thing participants were asked to do when they logged in was identify non-motor symptoms from a list that they were experiencing but had not yet spoken to a professional about.

Next, the website provided each participant with further information about the symptom they had highlighted including how commonly it affects people with Parkinson’s, guidance on how to manage the symptom themselves, and on what treatments or therapies they may be able to access.

An example of the kind of information that was provided to help people manage their symptoms

Next, participants were asked to identify the main reason why they had not reported the symptom to a medical professional from a list of options.

Depending on what they chose, participants were then provided with activities and information, including specially created videos, activities to help them weigh up the pros and cons of raising the issue, and guidance on managing their stress levels and emotions.

Screenshots of the videos that participants could watch to build their confidence around talking about non motor symptoms

Finally, participants were provided with communication tools to report their non-motor symptom. These included simple forms that participants could complete and print off to take with them to their next appointment.

An example of a form that participants could fill in and print at the end of their website session

Did it help people seek support?

Of the 35 people who started the study, 27 made their way through all the steps on the website and completed a questionnaire about the website in which most participants reported that they found using the website very useful.

When the research team followed up with participants again later 18 out of 20 who completed the final questionnaire said that they had raised the symptom with their professional.

Participant says (made up):

“I’m not particularly confident using computers or the internet but found the website extremely straightforward and easy to use. The information and activities that were provided were very helpful and reassuring, they helped me realise that I am not alone in experiencing these symptoms and that it’s OK to talk to my specialist about them. Having some prompts to take with me to my appointment made it so much easier to broach the subject…”

Catherine says:

“We’re delighted with how useful and user-friendly participants found the website, and we’re especially encouraged that it helped 18 of our participants to raise previously unreported symptoms with their medical professionals.
“This was a small pilot study but we believe these results provide important evidence that this kind of system can be helpful and we’re very keen to take it forwards. The next steps are looking to iron out some of the technical glitches we’ve had with the website and then to look towards doing a larger study.
“Our ultimate goal is to develop practical and user-friendly tools that can be made available widely to people with Parkinson’s that will help them to access the right treatments, care and support for their individual symptoms.”