Connected Symptom Management - Feasibility Study
Research type
Research Study
Full title
Connected Symptom Management for Patients and Carers. Innovative, Integrated and Connected.
IRAS ID
292501
Contact name
Roma Maguire
Contact email
Sponsor organisation
University of Strathclyde
Duration of Study in the UK
0 years, 8 months, 27 days
Research summary
Summary of Research
While the majority of people would prefer to die at home (Hoare et al 2015), only 23.5% of people do so compared to 46.9% who die in hospital, (Public Health England, 2018). However home care at the end of life has been shown to improve patient outcomes and reduce costs as well as increase satisfaction for informal carers (Shepperd et al 2016). Although support for informal carers alongside patients has long been advocated, this is often ad hoc with healthcare systems typically focusing on patients’ needs.
Technology has the potential to deliver solutions in relation to healthcare and the feasibility of using telehealth in palliative home care is growing, improving access to health care professionals at home and enhancing feelings of security and safety (Steindal et al 2020). The global pandemic has significantly impacted the delivery of palliative care services making adoption of technology that is both high-tech and high-touch, overcomes limitations of social distancing and supports people and their carers is now more essential than ever.
This study will explore a digital system to support patients receiving palliative care at home and their informal carers. This system will capture health information electronically and securely and share this with their healthcare team allowing them to respond appropriately and promptly, provide users with access to information that could maintain or improve their wellbeing thereby using technology to improve service provision and user outcomes.
The study will take place in 4 sites across the UK including hospices and hospitals. Patients with advanced cancer (lung or gastro-intestinal) or advanced respiratory diseases, and their informal carer will participate for up to 12 weeks. A range of outcome measures completed throughout participation will explore the feasibility and usability of the system as well as its impact on quality of life and healthcare utilisation.Summary of Results
This research project was sponsored and led by the University of Strathclyde and involved five clinical sites, two in Scotland and three in England. The project began in March 2021, with data collection starting in April 2023 and ending in January 2024.We conducted this project because the last 6 months of life often involves frequent visits to A&E and hospital admissions. Many people die in hospital when they would prefer to die at home. This situation is linked to people becoming more unwell, poor symptom management, and a lack of access to palliative care services. Other factors include insufficient planning for end-of-life care, caregiver stress and not enough community support. Better symptom control, palliative care and planning could reduce hospital visits and improve quality-of-life.
The project aimed to explore:
• How practical, acceptable, useful, and easy the system is for people at the end of life, their carers, and the professionals involved in their care.
• Indicators of effectiveness on patient and carer quality of life.
• How CARE-PAC fits into the end-of-life care pathway.
• Other key information needed for larger studies, like recruitment rates, dropouts, and missing data.Thirteen patients and their carers participated in the project for between 3-12 weeks. A small team of health professionals from each site also took part.
Everyone (patients, carers and health professionals) used the CARE-PAC system. Patients and carers completed a daily questionnaire on their device (like a smartphone or tablet). They had access to an e-library of information with links to reputable websites and local support details. The questionnaire data went to a secure database, processed by an algorithm to identify symptoms of concern, and then sent to a clinician website in real time. Health professionals checked this site daily to review information and respond to alerts.
To evaluate CARE-PAC, patients and carers completed a quality-of-life questionnaire and a usability questionnaire every three weeks. They also had short catch-up calls with a researcher and a longer interview at the end of their participation. Health professionals filled out a usability questionnaire, a survey about the project’s tech aspects, and joined focus groups to discuss their experiences.
Of the 13 patients, 10 were male, and 3 were female. There were 11 female carers and 2 male carers. Most patients (12) had a cancer diagnosis. Six patients completed the full 12 weeks. Reasons for stopping included being busy, thinking too much about their condition, and two patients passed away.
Compliance rates were 73% for patients and 66% for carers.
The usability data showed positive responses. Patients found the system easier to use and felt more confident over time. Carers wanted to use CARE-PAC frequently and did not find inconsistencies. Health professionals reported no changes in usability over time but noted complexities in adopting the system.Patients' quality-of-life data showed improvements in ‘overall quality of life’ and ‘social’ domains, while the ‘physical’ domain declined. There were no changes in carers’ overall quality-of-life reports.
Key themes from feedback included:
• Efficient communication: Enhanced care experience and strengthened relationships.
• Empowerment: Patients and carers felt they could understand and monitor symptoms.
• Usability: The system was simple and easy to use.
• Proactive care: Early symptom identification allowed timely interventions.
• Reassurance: Patients and carers felt reassured by daily data monitoring.
• Interaction improvement: Suggestions to provide more contextual information.
• User experience: Suggestions to introduce the system earlier in care.Given these positive outcomes, we plan to explore this concept further with a larger UK-wide study. If you have any questions or want more information, please contact the Principal Investigator, Professor Roma Maguire at roma.maguire@strath.ac.uk.
REC name
North West - Preston Research Ethics Committee
REC reference
21/NW/0060
Date of REC Opinion
16 Mar 2021
REC opinion
Further Information Favourable Opinion