An overview of four studies-within-a-trial (SWAT) was presented – completed as part of the Cognitive Occupation-Based programme trial for MS – COB-MS. Results of our qualitative SWATs regarding recruitment were presented, with focus on the:
– impact of ineligibility on patient’s perceptions of themselves, the nature of research and the likelihood of getting involved in future research.
– reasons individuals with MS and occupational therapists declined participation in the COB-MS, as well as potential barriers and enablers for participating in RCTs.
Results from a quantitative SWAT were also presented, focusing on:
– the effects of a patient-designed information sheet, compared with a standard, researcher-designed PIS, on recruitment, decision certainty, participant retention, PIS understanding, PIS likeability and decision to consent.
We presented the results of the research and discuss practicalities and considerations for integrating SWATs into a feasibility trial.
Dr Sinéad Hynes is a lecturer in occupational therapy in NUI, Galway. She started in this role following the completion of a postdoctoral research fellowship at the University of British Columbia funded by the National Multiple Sclerosis Society (US). Prior to this, she worked for the NHS on a large occupational therapy trial for people with dementia (Valuing Active Life in Dementia; VALID). She completed her PhD at the University of Cambridge, based at the MRC-Cognition and Brain Sciences Unit. Her research focuses on improving the daily function and quality of life of people with neurological conditions. There is a particular focus on those living with multiple sclerosis, as well as those who support them.
Dr Christopher Dwyer is a lecturer at the Technological University of the Shannon in Athlone, Ireland. Following completion of his PhD in 2011, which focused on Critical Thinking, Instructional Design, e-Learning and Argument Mapping, Chris moved into post-doctoral health research, focusing on the cognitive mechanisms regarding chronic illness – multiple sclerosis, in particular. He has also published research in the areas of Metacognition, Memory, Interactive Management, Chronic Pain, and Healthcare Judgment & Decision-Making. He is the author of Critical Thinking: Conceptual Perspectives and Practical Guidelines, published by Cambridge University Press.
Robert Joyce was an Embedded Patient Researcher in the COB-MS trial, where he used his experience of living with Multiple Sclerosis to be the voice of the participant. To help him be a more effective advocate he trained with EUPATI to be a Patient Expert. He has a blog (A 30 Minute Life [https://www.a30minutelife.com]) and podcast, where he shares what he has learned, as a patient and researcher. This helps him act as a bridge between these two communities, with the aim of building trust, so new therapies and medicines which are being developed improve the quality of life of people living with chronic illness