People with Parkinson’s positive about digital at-home tests
Can cognitive decline in people with Parkinson’s disease be measured using digital tests at home? According to an interdisciplinary team of researchers, the answer is yes. They investigated this with a Kiem grant from Leiden University.
Shaking, walking difficulties and other motor symptoms are what many of us associate with Parkinson’s disease. But most people with Parkinson’s also experience a range of less visible symptoms, including anxiety and cognitive difficulties such as memory issues and slower thinking or information processing. Although these symptoms can affect daily life, patients are generally referred to a neuropsychologist once the symptoms have become more pronounced, making treatment more difficult.
Stress exacerbates symptoms
There are also drawbacks to being referred to a neuropsychologist. ‘A neuropsychological assessment takes time and money, and it can be stressful for the patient,’ researcher Marit Ruitenberg explains. ‘We know from previous research that stressful situations can exacerbate motor symptoms.’
Intermediate solution
This prompted Ruitenberg and her colleagues to consider whether an intermediate solution might be possible: a digital test that people with Parkinson’s could complete independently at home. Such a test could help identify patients who might benefit from consulting a neuropsychologist.
‘The idea sparked all kinds of new questions,’ Ruitenberg continues. ‘Would people with Parkinson’s want to do an at-home test? Could they manage it on their own? And would the results be reliable?’
The at-home digital tests appear to be reliable, although the scores were slightly lower than on the paper tests
Interdisciplinary expertise
Answering these questions required expertise from different disciplines. Alongside the neuropsychologists specialising in brain function (including Hanneke Hulst and Julie Hall), the research team included neurologists with knowledge of Parkinson’s symptoms and digital specialists who could help develop the test.
Thanks to a Kiem grant from Leiden University, which fosters interdisciplinary collaboration, the project could go ahead with a range of partners: from the LUMC, neurologists Bob van Hilten and Dagmar Hepp; from ProPark, a national Parkinson’s disease study, researcher Roel Weijer; and app developer MS Sherpa to build the digital test.
Digital and traditional testing
PhD candidate Isabelle van Hapert conducted the research. ‘We recruited 47 participants, and I visited them at home. They completed the digital tests while I did the traditional pen and paper tests. I observed whether they needed help with the digital tests, whether they became frustrated and interviewed them afterwards about their experience.’
Promising findings
The findings are promising: the at-home digital tests appear to be reliable, although the scores were slightly lower than on the paper tests. ‘That could be because the instructions for the digital test weren’t always clear to the participants,’ Van Hapert explains. ‘In a further implementation of a digital test, we’d have to take a good look at the instructions.’
Most participants liked the digital test and felt it would be useful if travelling to appointments became more difficult. ‘A small number preferred not to test at home because they felt they would miss the interaction with professionals and the opportunities to ask questions,’ says Van Hapert.
‘The majority of people with Parkinson’s whose symptoms aren’t yet severe would be able to complete the at-home test. That’s the main result,’ Van Ruitenberg adds. ‘The potential of the at-home test is that people can choose when to take it, at a moment that feels right for them.’
Great value
The interdisciplinary nature of the project proved hugely valuable, says Van Hapert. ‘The LUMC neurologists told me that cognitive decline in people with Parkinson’s isn’t measured systematically. I hadn’t realised that. They were really enthusiastic about the project.’
In a follow-up, Van Hapert and Ruitenberg would like to optimise the assessment of the different cognitive areas. This would give a more complete picture of their cognitive abilities. But they first need to find new funding. ‘All the partners are keen to continue,’ Ruitenberg concludes.
What is Kiem?
Through Kiem, Leiden University is providing 25 annual seed grants between 2024 and 2026 to develop new interdisciplinary (interfaculty) teaching/research collaborations and encounters. Kiem applications (€10,000 per project) should involve staff from at least two faculties at Leiden University.
The application round for Kiem grants for 2026 is currently being prepared. Please check our website regularly for details!