RecruitingNot ApplicableNCT07038486

Patient Engagement Investigation of NMS Assist

The Impact of a Digital System on the Monitoring and Self-management of Non-motor Symptoms in People With Parkinson's

Sponsor

Newcastle University

Enrollment

30 participants

Start Date

Aug 6, 2025

Study Type

INTERVENTIONAL

Conditions

Parkinson Disease

Summary

Parkinson's can cause a wide range of non-motor symptoms (NMS), including pain and problems with mental health, memory and sleep. These affect the quality of life of people with Parkinson's (PwP) and their care partners (CP). If these issues are not recognised and managed quickly, they can result in escalating problems. Many PwP are unsure of the extent and variety of the NMS and how simple adjustments at home could improve them. We have developed a digital system to help PwP monitor their non-motor symptoms and develop skills to self-manage them. Such a tool needs to be simple to use, safe and effective. We will ask 30 PwP and CPs to use the digital tool for 6 months, and we will monitor how they use the tool. PwP and CPs will be asked if they feel more knowledgeable and confident to manage their own symptoms whilst being better able to discuss a problem with their healthcare professional. A smaller group of participants will discuss their experiences in more detail to help pinpoint aspects that work well and those needing adjustment and development. It is thought that the use of this system will result in improved quality of life and increased knowledge and confidence for managing symptoms while safely reducing the time spent by healthcare professionals on manageable non-motor symptoms.

Eligibility

Min Age: 18 Years

Inclusion Criteria12

All:
Age 18 years or over
Have compatible smartphone/data access (access to a digital device is a necessary prerequisite of system use, and the formative usability study had success in recruiting participants with varying levels of experience with smartphones)
Be fluent in English
Able and willing to provide informed consent
Able and willing to comply with intervention requirements
For clinically diagnosed people with Parkinson's (PwP) (ICD-10-CM G20):
Not resident in a care home or nursing home
Ambulant
Interested in monitoring and managing their NMS
For CPs:
\- Be caring for a clinically diagnosed PwP (ICD-10-CM G20) who is participating in the study

Exclusion Criteria9

All:
Previous involvement in the development or testing of the digital system
In a dependent/unequal relationship with the research or care teams or any PPI representatives
PwP:
Secondary cause of Parkinsonism
Significant cognitive impairment or a diagnosis of Parkinson's disease dementia
Significant comorbidity, which, in the opinion of the chief investigator, would preclude safe participation in the study or protocol compliance
A life expectancy of \<6 months
Living in residential care facilities

Interventions

DEVICENMS Assist

The system enables people with Parkinson's and their care partners to complete questionnaires about symptoms and burden and share that information with their care team. They can also access self-help resources and materials about managing non-motor symptoms. Healthcare providers have a dashboard that flags any worsening symptoms or discrepancies between PwP and CP reports, enabling their to prioritise care and quickly see the status of their patients. The system also enables PwP or CPs to request healthcare contact.