Public and patient involvement (PPI) has been identified as an increasingly desired and, often, required component of trial methodology-leading to higher quality, more accessible and relevant clinical research, alongside increased recruitment, funding success and insight into research impact. However, despite the great variety of frameworks and checklists available for assessing PPI, most are limited with respect to important features (e.g.
View Article and Find Full Text PDFIntroduction: There is a high prevalence of cognitive difficulties in MS, but despite this, there are few programmes targeting cognition that focus on the ability to function well in everyday life. The Cognitive Occupation-Based programme for people with Multiple Sclerosis (COB-MS), an occupation-focused cognitive intervention, was developed to address this. It addresses both the functional difficulties and the wide-ranging symptoms that present in MS.
View Article and Find Full Text PDFBackground: Despite its importance, recruiting a sufficient sample size for randomised controlled trials (RCTs) can pose a significant challenge, which has real-world impact on reliability of evidence, trial completion and ultimately, patient care. Technology has potential to enhance the recruitment process, but there is a lack of evidence regarding its current use and effectiveness. Consistent with findings from the PRioRiTy I study, the current research aims to explore the advantages and disadvantages to using technology during the recruitment process for RCTs.
View Article and Find Full Text PDFPurpose: An ageing population and a global pandemic has placed greater demands on palliative care services. Numerous studies describe the patient experience in palliative care, however, few explore the healthcare professional's experience of caring in this setting. This study explored the emotional challenges faced by palliative care professionals working in adult hospice services in Ireland.
View Article and Find Full Text PDFPurpose: COB-MS is an eight-session, Cognitive Occupation-Based programme for people with both MS and cognitive difficulty - designed to enhance cognition and daily functioning, through a combination of goal-setting, cognitive strategy engagement, group activities, home-practice activities and one-on-one sessions. This research aims to investigate the acceptability of COB-MS from the perspective of people living with MS, as well as the occupational therapists who facilitated the programme.
Materials And Methods: Two content analyses were conducted on interview data from ( = 11) COB-MS participants and ( = 8) COB-MS facilitators.
Background: The number of older LGBTQIA+ adults is set to rise significantly in the coming years. The rising numbers sit together with the rise in the number of people in Ireland diagnosed with dementia. In Ireland, no dementia-specific services exist for people from the LGBTQIA+ community.
View Article and Find Full Text PDFTrials
January 2023
Background: Cognitive difficulties experienced by people with multiple sclerosis (MS) impact on quality of life and daily functioning, from childcare and work to social and self-care activities. The Cognitive Occupation-Based programme for people with MS (COB-MS) was developed as a holistic, individualised cognitive rehabilitation intervention to address the wide-ranging symptoms and functional difficulties that present in MS, including the ability to maintain employment, social activities, home management and self-care. The aim of the research is to evaluate the feasibility and preliminary efficacy of COB-MS for people with MS.
View Article and Find Full Text PDFBackground: A recent survey of 109 healthcare professionals explored how UK healthcare professionals typically assess and treat multiple sclerosis (MS)-related cognitive impairment. Little is currently known about what constitutes usual care for cognitive impairment and psychosocial care for people with MS in Ireland.
Aim: The aim of the current research was to survey healthcare professionals (HCPs) who work with people with MS, to understand current assessment and management of cognition and psychosocial care in people with MS in the Republic of Ireland.
Background And Aim: The process of trial recruitment is vital, given its impact on resources, statistical power and the validity of findings. A participant information leaflet (PIL) is often the initial and primary source of information engaged by potential participants during recruitment. Research suggests that a variety of manipulations to a PIL can be made during its development to enhance understanding, readability and accessibility.
View Article and Find Full Text PDFReliable remote cognitive testing could provide a safer assessment of cognitive impairment in multiple sclerosis (MS) during the COVID-19 pandemic and thereafter. Here we aimed to investigate the reliability and feasibility of administering Brief International Cognitive Assessment for MS (BICAMS) and the Trail-Making Test (TMT) to people with MS online. Between-group differences on BICAMS and the TMT were examined in a sample of 68 participants.
View Article and Find Full Text PDFBackground: Eligibility guidelines in research trials are necessary to minimise confounds and reduce bias in the interpretation of potential treatment effects. There is limited extant research investigating how being deemed ineligible for such trials might impact patients' perceptions of themselves and of research. Better understanding of the impact of patient ineligibility could enhance design and implementation of future research studies.
View Article and Find Full Text PDFIn this Open Letter we present reflections from three different perspectives on the integration of public and patient involvement (PPI) in a research trial. We reflect on the experience of having a patient employed as a contract researcher, with no prior research experience, on a feasibility trial of cognitive rehabilitation in multiple sclerosis. This Open Letter is written by the PPI research team member with reflections from a researcher on the trial and the principal investigator.
View Article and Find Full Text PDFThe current study-within-a-trial explored individuals' decisions to decline participation in research trialling a chronic illness-focused therapy (i.e. multiple sclerosis).
View Article and Find Full Text PDFMultiple Sclerosis (MS) is a neurological condition which usually manifests between the ages of 20-40 years. This is a critical period for developing relationships, particularly romantic relationships. People with MS can experience sexual dysfunction, limb weakness, fatigue, pain, reduced mood and bladder/bowel dysfunction; potentially affecting their ability to participate in many meaningful activities, including those associated with romantic relationships, dating or engaging in sexual intercourse.
View Article and Find Full Text PDFScand J Occup Ther
July 2021
Background: Evidence for the effectiveness of occupational therapy for people with multiple sclerosis (MS) is yet to be established.
Aims/objectives: To review the evidence regarding the effectiveness of occupational therapy interventions in improving outcomes for adults with MS.
Material And Methods: We completed a scoping review of occupational therapy and multiple sclerosis following a scoping review methodological framework.
HRB Open Res
March 2020
This protocol describes a double-blind, randomised non-inferiority study-within-a-trial (SWAT), comparing the effects of a patient-designed-and-informed participant information sheet with a standard, researcher-designed participant information sheet on recruitment, retention, decision certainty, participant information sheet understanding and likeability. The SWAT is part of a larger trial that aims to evaluate the feasibility and preliminary efficacy of a cognitive occupation-based programme for people with MS (COB-MS) on cognitive and daily functioning for people with multiple sclerosis. : During the study, 120 people with multiple sclerosis will be randomly allocated to one of the two groups, where they will either receive a standard participant information sheet or a patient-designed participant information sheet.
View Article and Find Full Text PDFTrials
March 2020
Background: Cognitive difficulties experienced by people with multiple sclerosis (MS) impact their quality of life and daily functioning, from childcare and work, to social and self-care activities. Despite the high prevalence of cognitive difficulties seen in MS, there is a lack of developed programmes that target cognition, while also supporting patients by helping them to function well in everyday life. The Cognitive Occupation-Based programme for people with MS (COB-MS) was developed as a holistic, individualised cognitive rehabilitation intervention.
View Article and Find Full Text PDFIntroduction: Cognitive difficulties have been reported to have the greatest effect on function and quality of life in people with multiple sclerosis, affecting 50-60% of people. To date, few interventions have been developed to treat cognitive issues in multiple sclerosis. Here we report on a Cognitive Occupation-Based programme (COB-MS) for people with Multiple Sclerosis an evidence-based intervention to address everyday problems encountered due to cognitive difficulties.
View Article and Find Full Text PDF: The objective of this longitudinal study examined, first, whether people with multiple sclerosis who previously advocated for angioplasty to treat chronic cerebral spinal venous insufficiency (CCSVI) through YouTube continued reporting benefits. Second, it examined a new cohort reporting on CCSVI treatment, and third, whether perspectives have changed.: YouTube videos from August 2011 to January 2019 related to CCSVI were retrieved.
View Article and Find Full Text PDFCognitive impairments are common in MS and affect personal, social, and occupational functioning. There is a developing body of evidence highlighting the role of cognitive rehabilitation, but there is still no evidence for a validated holistic approach. The aim of this study was to assess the effectiveness of Cognitive Occupation-Based Programme for People with Multiple Sclerosis (COB-MS) for improving daily life and cognitive impairment.
View Article and Find Full Text PDFIntroduction: To develop occupational therapy's evidence base and improve its clinical outcomes, occupational therapists must increase their research involvement. Barriers to research consumption and leadership are well documented, but those relating to delivering research interventions, less so. Yet, interventions need to be researched within practice to demonstrate their clinical effectiveness.
View Article and Find Full Text PDFAging Clin Exp Res
October 2016
Computerised training has been shown to benefit cognitive function in older adults but rarely, if ever, enhances performance in everyday life. This study examines how an entirely internet-based cognitive programme can generalise to daily functioning. This is an exploratory study (n = 25) of computer and video-based strategy training with older adults that was conducted over the internet to facilitate generalisation.
View Article and Find Full Text PDFObjectives: In the Netherlands, Graff et al. found Community Occupational Therapy in Dementia (COTiD) demonstrated benefits to people with dementia and family carers. In this study, focus groups took place with people with dementia and family carers to explore how to make COTiD relevant to the UK context.
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