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, NMS Assist, 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 60 PwP, CP and members of their Parkinson's healthcare team to use NMS Assist for 12 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 the participants will discuss their experiences in more detail to help pinpoint aspects that work well and those needing adjustment and development. Members of the healthcare team will be asked to assess any improvement in communication with PwP and CPs. 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 health care professionals on manageable non-motor symptoms.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
SUPPORTIVE_CARE
Masking
NONE
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.
Patient (and care partner) activation
Patient Activation Measure (and caregiver version) will be used to evaluate their confidence, knowledge, and skills at non-motor symptom self-management
Time frame: Assessed monthly for 12 months
Presence of non-motor symptoms
Measured using the Non-Motor Symptoms Questionnaire (NMSQ), patients tick 'yes' or 'no' for each symptom listed
Time frame: Measured at patients' discretion throughout intervention (12 months)
Frequency and severity of non-motor symptoms
Measured using the Movement Disorder Society Non-Motor Symptoms Scale (MDS-NMS), where higher scores indicate greater frequency and/or severity
Time frame: Measured at baseline, 6, and 12 months
Short-form self-assessment of functioning and well-being related to Parkinson's disease
Measured using the short-form Parkinson's Disease Questionnaire (PDQ-8), patients indicate the frequency with which they experience certain issues
Time frame: Measured at patients' discretion throughout intervention (12 months)
Long-form self-assessment of functioning and well-being related to Parkinson's disease
Measured using the long-form Parkinson's Disease Questionnaire PDQ-39, patients indicate the frequency with which they experience certain issues
Time frame: Measured at baseline, 6, and 12 months
Carer well-being and quality of life
Measured using the Parkinson Disease Questionnaire for care partners; care partners indicate the frequency with which they experience certain issues
Time frame: Measured at care partners' discretion throughout intervention (12 months)
Health status
Measured using the EQ-5D-5L; higher scores on the EQ-5D-5L descriptive system indicate worse health problems in the specific dimension whereas a high score in the EQ VAS indicates better health on the day of the questionnaire
Time frame: Measured at baseline, 6, and 12 months
Mental well-being
Measured using the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS); Scores range from 14 to 70 (on the 14 item version) and higher scores indicate greater positive mental wellbeing
Time frame: Measured at baseline, 6, and 12 months
Adverse events
Adverse Event Reporting
Time frame: Throughout 12 months
Clinical safety
Record of any events missed
Time frame: Throughout 12 months
Healthcare contacts
Number of PwP-initiated contacts with healthcare team (through the 'request healthcare contact' feature) and the number of HCP-initiated contacts (due to system flagging PwP based on PwP and CP-reported outcomes), recorded by the system
Time frame: Throughout 12 months
Technical and implementation issues
Technical issues identified from the system use data and by participants and process measures relating to service delivery
Time frame: Throughout 12 months
Quantitative usability
System Usability Scale, out of 100 with higher scores indicating better usability
Time frame: 6 and 12 months
Acceptability
Acceptability and usability feedback from semi-structured interviews
Time frame: 3, 6, and 12 months
System use and compliance
Data collected via the system about users engagement with the system (e.g. number of times accessed, length of time accessed, features used)
Time frame: Throughout 12 months
Engagement
Qualitative feedback from participants
Time frame: 3, 6, and 12 months
Costs
Cost analysis will be used to examine the factors impacting costs for implementing the system
Time frame: Throughout 12 months
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