The iSupport-PD study
Research type
Research Study
Full title
A Feasibility Trial of iSupport-PD, a Digital Intervention for carers of people with Parkinson's and cognitive impairment
IRAS ID
325361
Contact name
Annette Hand
Contact email
Sponsor organisation
Northumbria University
ISRCTN Number
ISRCTN16483203
Duration of Study in the UK
2 years, 5 months, 30 days
Research summary
Research Summary:
This project aims to assess the feasibility of an evidence-based digital intervention for carers carers of people with Parkinson’s disease (PD) with cognitive impairment.
We have adapted a currently available digital intervention (iSupport) to meet the specific needs of carers of people with PD with cognitive impairment to improve the support currently available and offered. We now need to explore the feasibility of a randomised controlled trial (RCT) for the adapted version (iSupport-PD) and the acceptability of the intervention to have confidence that a definitive RCT of the intervention will be successful.
Our research team’s extensive methodological expertise and established connections with clinical and patient networks will ensure that the intervention is maximally effective and engaging for carers of people with PD with cognitive impairment and trial recruitment is successful and inclusive.
We will employ a validated co-production methodology to adapt the available digital intervention to meet the specific needs of carers of people with PD with cognitive impairment (iSupport-PD).
A feasibility trial will be carried out with a mixed-methods process evaluation of iSupport-PD to explore the feasibility of a RCT for iSupport-PD and the acceptability of the intervention.
In future work, we will carry out a definitive RCT and health economic evaluation that will provide the evidence on effectiveness and cost effectiveness required to implement iSupport-PD nationally.Lay Summary of Results:
In the UK there are over 166,000 people with Parkinson’s (PwP). At diagnosis one in five PwP will experience changes in thinking, memory and behaviour. Most PwP rely on a care partner (CP), often a family member, to support daily living. While caring for someone is important, it can be stressful and demanding. Unfortunately, there is limited support available for CPs.
iSupport is a useful resource designed to support CPs of people with dementia. However, iSupport does not address the specific needs of CPs supporting PwP.
Our study aimed to:
- adapt iSupport for CPs of PwP experiencing thinking, memory and behaviour changes;
- ensure the intervention was relevant, engaging and useful; and
- test whether the research procedures were practical for a larger study.We worked with over 30 CPs to adapt iSupport, developing a website called Supporting PARkinson’s Care partners (SPARC). We conducted an 18-month trial of SPARC involving 87 CPs: 44 had access to SPARC, 43 received usual care. Information was collected at 0, 3, 6 and 12 months.
CPs found SPARC useful and engaging, reporting benefits including improved understanding of symptoms, reassurance through shared experiences, and greater confidence in managing challenging behaviour. We have presented our study findings at national and international conferences, with articles submitted for publication.
CPs and PwP from across the UK joined our lay advisory group and received training and payment for their time. The group was involved from developing the original proposal to supporting the study’s delivery. They advised on the design of SPARC, preparation of study materials, research methods, data analysis and sharing findings.
We now plan to carry out a large clinical trial to test whether SPARC leads to improved care partner wellbeing. We will also look at how to make sure SPARC reaches the care partners that need it most.
REC name
East of England - Cambridge South Research Ethics Committee
REC reference
25/EE/0021
Date of REC Opinion
20 Feb 2025
REC opinion
Further Information Favourable Opinion