National Survey of Healthcare Practitioners and Allied Health Professionals regarding ‘treatment-as-usual’ with respect to the clinical care, assessment and management of MS in Ireland
In addition to our evaluation of COB-MS, our research team has developed and is currently administrating a national survey of healthcare practitioners and allied health professionals regarding ‘treatment-as-usual’ with respect to the clinical care, assessment and management of MS in Ireland. Though approximately 40-65% of people living with MS have difficulties with cognition, it is unclear how cognitive impairment is currently assessed and managed in the Republic of Ireland and what, if any, rehabilitation programs are being run and by whom. Such knowledge is important for maximising treatment available to people living with MS, as well its impact on both current and future research in the field. In addition, it is an important step in trying to standardise care at a European level for people with MS who have cognitive difficulties. The aim of this research is to assess what is the ‘treatment-as-usual’ being provided to people with MS in Ireland that have cognitive difficulties. If you or someone you know is a healthcare practitioner or allied health professional with experience working with people with MS, please take part and/or share the survey with them through this link.
As part of the COB-MS research program, we are, of course, interested in evaluating the feasibility and efficacy of the COB-MS to help facilitate improvements in both cognitive and daily functioning. However, we are also interested in health research more broadly and the various ways in which such research can be conducted. As a result, we are conducting a number of associated studies within COB-MS, in order to learn more about how we can improve research programs like COB-MS. These associated studies are known as SWATs or studies-within-a-trial. The following are some SWATs we are currently conducting within COB-MS and are either registered or submitted for registration with The Northern Ireland Network for Trials Methodology Research SWAT Store:
Recruitment is a critical process for randomised trials; and the participant information sheet (PIS) is a key source of information for potential participants during the recruitment process. Though the PIS is important for ensuring that participants understand what they are consenting to, such ethical considerations don’t necessarily ensure PIS quality. For example, there is often poor understanding of PISs amongst participants because of their length and the accessibility of their language. However, previous research on various ways of overcoming such problems has revealed mixed results. Thus, SWAT 1 aims to compare the effects of a standard, researcher-designed information sheet and a PIS developed in light of Public and Patient Involvement (by a person with lived experience of MS working with the research team) on participant recruitment, program completion, understanding and likeability for the two PISs.
2. Exploring the impact of ineligibility on individuals expressing interest in a trial aimed at improving daily functioning regarding perceptions of self, research and likelihood of future participation: A PPI-infused qualitative SWAT
Though there is significant lack of research on the impact of being deemed ineligible to participate in research, a better understanding of this phenomenon may improve the way in which future research is designed and conducted. Thus, a series of semi-structured interviews will be conducted with people deemed ineligible to participate in the COB-MS program, to explore their experience of being deemed ineligible and its potential impact on how such individuals perceive themselves, research and the likelihood of expressing interest to participate in future research.
Occupational therapy is a new discipline relative to other health sciences and, as its scope is ever expanding, efforts have been made to advance the field through facilitating a more evidence-based way of practice. Such expansion aims not only at enhancing occupational therapy practice, but also to reinforce occupational therapy’s standing among other health professions and to deliver the best client care possible. Thus, it is important for occupational therapy to prioritise research and encourage clinicians to further engage with research, regardless of potential barriers. As a result, three semi-structured focus group interviews will be conducted with occupational therapists who previously expressed interest in getting involved with the host trial, but did not participate in any meaningful way (i.e. receiving relevant training and subsequent delivery of the intervention).
4. A qualitative investigation of reasoning behind decisions to decline participation in a research intervention: A study-within-a-trial
Enhancement of recruitment strategies has become an important goal of research design, given that the process of participant recruitment – according to extant methodologies – can be a challenging process. In order to develop novel, efficient ways of recruiting participants to research trials, better understanding of potential participants’ decision-making regarding participation is necessary. However, this is often overlooked given the substantial lack of research evaluating the reasoning behind refusal to participate in research and RCTs in particular. Thus, SWAT 4 will explore individuals’ decisions to decline participation in COB-MS through a series of semi-structured interviews with such ‘decliners’, as well as a focus-group COB-MS’s Public & Patient Involvement panel to review interview findings and further elaborate on emerging concepts and themes.
5. Testing the feasibility of online administration of BICAMS and the Trail-Making Test in the assessment of cognitive difficulties in Multiple Sclerosis
This study-within-a-trial (SWAT) investigates whether the Trail-Making Test (TMT) and cognitive measures recommended by the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS), and can be reliably administered online. These assessments are normally administered by health-care professionals or researchers in face-to-face settings. However, the COVID-19 pandemic has made it impossible to administrate these assessments ‘as usual’ without unnecessary risk to both researcher and participants – the latter who is already part of a vulnerable cohort. Thus, such assessment has been moved online. Moreover, administering these assessments online potentially provide a more convenient and cost-effective method of assessment compared to in-person testing. Previous research has shown that the CVLT-II and the SDMT (within BICAMS), which test verbal memory and information processing respectively, can successfully be administered remotely and yield indistinguishable results compared with in-person testing. However, there has been no research to date investigating whether the BVMT-R, a test of visuospatial memory, or the TMT – a measure of visual scanning and task-switching, can be delivered remotely. Establishing that these tests can be reliably delivered online would help to promote a safe and convenient method of cognitive testing in MS from people’s homes; and, potentially, reduce the stress and the risk of infection that comes with in-person testing.