The Experts below are selected from a list of 360 Experts worldwide ranked by ideXlab platform
Kevin Talbot - One of the best experts on this subject based on the ideXlab platform.
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tracheostomy in Motor Neurone Disease
Practical Neurology, 2019Co-Authors: Martin R Turner, Christopher J. Mcdermott, Christina Faull, Annabel H Nickol, Jonathan Palmer, Kevin TalbotAbstract:Tracheostomy-associated ventilation for the respiratory insufficiency caused by amyotrophic lateral sclerosis (Motor Neurone Disease (MND)) is a complex issue with practical, ethical and economic dimensions. This article considers the current prevalence of tracheostomy in MND, the evidence for its benefit both for survival and quality of life, and the practicalities of its implementation. The decision to request invasive ventilatory support is among the most challenging for those living with MND. Neurologists should be prepared to discuss this option openly and objectively: we suggest a framework for discussion, including withdrawal of therapy.
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nutritional pathway for people with Motor Neurone Disease
British Journal of Community Nursing, 2016Co-Authors: Rachael Marsden, Annabel H Nickol, Kevin Talbot, Philip Allan, Victoria Blackwell, James E East, Clare Lawson, Emma Millard, Alexander G Thompson, Martin R TurnerAbstract:This paper provides an overview of the nutritional management and care of people living with Motor Neurone Disease (MND) in a specialist nutrition clinic. A specialist pathway of care has been developed to enable people living with MND to undergo a percutaneous endoscopic gastrostomy (PEG) procedure in a safe way; the pathway incorporates attendance at a dedicated nutrition clinic, a stratification tool to identify patients with a high periprocedural risk and a PEG insertion team with significant experience in the MND population. Since this pathway has been in place, gastrostomies have been successfully placed in patients with a forced vital capacity (FVC) of less than 50%; previously, this would not have been possible.
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mimics and chameleons in Motor Neurone Disease
Practical Neurology, 2013Co-Authors: Martin R Turner, Kevin TalbotAbstract:The progression of Motor Neurone Disease (MND) is currently irreversible, and the grave implications of diagnosis naturally fuels concern among neurologists over missing a potential mimic disorder. There is no diagnostic test for MND but in reality there are few plausible mimics in routine clinical practice. In the presence of a progressive pure Motor disorder, signs such as florid fasciculations, bilateral tongue wasting, the ‘split hand’, head drop, emotionality, and cognitive or behavioural impairment carry high positive predictive value. MND is clinically heterogeneous, however, with some important chameleon-like presentations and considerable variation in clinical course. Lack of confidence about the scope of such variation, or an approach to diagnosis emphasising investigations over clinical common sense, has the potential to exacerbate diagnostic delay in MND and impede timely planning of the care which is essential to maximising quality of life.
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development of a patient reported outcome measure for fatigue in Motor Neurone Disease the neurological fatigue index nfi mnd
Health and Quality of Life Outcomes, 2011Co-Authors: Chris Gibbons, Pamela J. Shaw, John Ealing, Kevin Talbot, Everard W Thornton, Roger J Mills, John D Mitchell, Alan Tennant, Carolyn A YoungAbstract:Background The objective of this research was to develop a Disease-specific measure for fatigue in patients with Motor Neurone Disease (MND) by generating data that would fit the Rasch measurement model. Fatigue was defined as reversible Motor weakness and whole-body tiredness that was predominantly brought on by muscular exertion and was partially relieved by rest.
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rasch analysis of the hospital anxiety and depression scale hads for use in Motor Neurone Disease
Health and Quality of Life Outcomes, 2011Co-Authors: Pamela J. Shaw, John Ealing, Kevin Talbot, Chris Gibbons, Everard W Thornton, John D Mitchell, Alan Tennant, R J Mills, Carolyn A YoungAbstract:Background: The Hospital Anxiety and Depression Scale (HADS) is commonly used to assess symptoms of anxiety and depression in Motor Neurone Disease (MND). The measure has never been specifically validated for use within this population, despite questions raised about the scale’s validity. This study seeks to analyse the construct validity of the HADS in MND by fitting its data to the Rasch model. Methods: The scale was administered to 298 patients with MND. Scale assessment included model fit, differential item functioning (DIF), unidimensionality, local dependency and category threshold analysis. Results: Rasch analyses were carried out on the HADS total score as well as depression and anxiety subscales (HADS-T, D and A respectively). After removing one item from both of the seven item scales, it was possible to produce modified HADS-A and HADS-D scales which fit the Rasch model. An 11-item higher-order HADS-T total scale was found to fit the Rasch model following the removal of one further item. Conclusion: Our results suggest that a modified HADS-A and HADS-D are unidimensional, free of DIF and have good fit to the Rasch model in this population. As such they are suitable for use in MND clinics or research. The use of the modified HADS-T as a higher-order measure of psychological distress was supported by our data. Revised cut-off points are given for the modified HADS-A and HADS-D subscales.
Christopher J. Mcdermott - One of the best experts on this subject based on the ideXlab platform.
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tracheostomy in Motor Neurone Disease
Practical Neurology, 2019Co-Authors: Martin R Turner, Christopher J. Mcdermott, Christina Faull, Annabel H Nickol, Jonathan Palmer, Kevin TalbotAbstract:Tracheostomy-associated ventilation for the respiratory insufficiency caused by amyotrophic lateral sclerosis (Motor Neurone Disease (MND)) is a complex issue with practical, ethical and economic dimensions. This article considers the current prevalence of tracheostomy in MND, the evidence for its benefit both for survival and quality of life, and the practicalities of its implementation. The decision to request invasive ventilatory support is among the most challenging for those living with MND. Neurologists should be prepared to discuss this option openly and objectively: we suggest a framework for discussion, including withdrawal of therapy.
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the tim system developing a novel telehealth service to improve access to specialist care in Motor Neurone Disease using user centered design
Amyotrophic Lateral Sclerosis, 2018Co-Authors: Esther Hobson, Pamela J. Shaw, Cindy Cooper, Wendy Baird, Rebecca Partridge, Sue Mawson, Ann Quinn, Theresa Walsh, Daniel Wolstenholme, Christopher J. McdermottAbstract:AbstractObjectives: Attendance at a specialist multidisciplinary Motor Neurone Disease (MND) clinic is associated with improved survival and may also improve quality of life and reduce hospital admissions. However, patients struggle to travel to clinic and may experience difficulties between clinic visits that may not be addressed in a timely manner. We wanted to explore how we could improve access to specialist MND care. Methods: We adopted an iterative, user-centered co-design approach, collaborating with those with experience of providing and receiving MND care including patients, carers, clinicians, and technology developers. We explored the unmet needs of those living with MND, how they might be met through service redesign and through the use of digital technologies. We developed a new digital solution and performed initial testing with potential users including clinicians, patients, and carers. Results: We used these findings to develop a telehealth system (TiM) using an Android app into which pati...
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factors influencing decision making in relation to timing of gastrostomy insertion in patients with Motor Neurone Disease
BMJ, 2014Co-Authors: Theocharis Stavroulakis, Pamela J. Shaw, Wendy Baird, Susan Baxter, Theresa Walsh, Christopher J. McdermottAbstract:Objectives This study aimed to explore the decision-making process leading up to gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support Motor Neurone Disease patients with dysphagia. However, there is no robust evidence to suggest the optimal timing for gastrostomy insertion. Methods Retrospective qualitative exploration using semistructured interviews with paired patients and carers in order to elicit their perceptions in relation to gastrostomy timing. Results 27 patients consented to the study; of these, 23 underwent a successful gastrostomy. Approximately 3 months following a successful gastrostomy, 10 patients and 8 carers were interviewed. Decision-making in relation to the timing of gastrostomy was described as being a difficult process with individual variations and wishes. A range of factors acted as triggers for taking the decision to proceed with gastrostomy such as prolonged, tiring and effortful meals; the task of food preparation; choking and aspiration; and weight loss. Factors such as the reluctance to give up oral feeding, not realising the potential benefits and negative perceptions of gastrostomy influenced a decision to delay the procedure. A tendency for late insertion was identified despite the opposite advice by health professionals. Conclusions The advice for early insertion does not outweigh the personal perceptions and psychosocial factors for patients and their carers. Understanding the factors which influence decision-making on an individual basis is important for information and care provision by healthcare professionals in aiding patients, and their carers, to make informed decisions in relation to gastrostomy timing.
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the impact on the family carer of Motor Neurone Disease and intervention with noninvasive ventilation
Journal of Palliative Medicine, 2013Co-Authors: Susan Baxter, Pamela J. Shaw, Wendy Baird, Stephen Bianchi, Sue Thompson, Stephen J Walters, Ellen Lee, Sam H Ahmedzai, Alison Proctor, Christopher J. McdermottAbstract:Abstract Background: The diagnosis of Motor Neurone Disease (MND) has a profound effect on the functioning and well-being of both the patient and their family, with studies describing an increase in carer burden and depression as the Disease progresses. Aim: This study aimed to assess whether patient use of noninvasive ventilation (NIV) impacted on their family carer, and to explore other sources of carer burden. Design: The study used qualitative interviews and scaled measures of carer health and well-being completed at three monthly intervals until patient end of life. Participants: Sixteen family carers were followed up over a period ranging from one month to two years. Results: NIV was perceived as having little impact on carer burden. The data however highlighted a range of sources of other burdens relating to the physical strain of caring. The Medical Outcomes Study Short Form (SF-36 Health Survey) Physical Component Summary (PCS) scores were considerably below that of the Mental Component Summary (...
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the use of non invasive ventilation at end of life in patients with Motor Neurone Disease a qualitative exploration of family carer and health professional experiences
Palliative Medicine, 2013Co-Authors: Susan Baxter, Pamela J. Shaw, Wendy Baird, Stephen Bianchi, Sue Thompson, Stephen J Walters, Ellen Lee, Sam H Ahmedzai, Alison Proctor, Christopher J. McdermottAbstract:Background:Non-invasive ventilation improves quality and quantity of life in patients with Motor Neurone Disease who have respiratory failure. Use of non-invasive ventilation may, however, result in complex clinical issues for end-of-life care, with concerns as to whether and how it should be withdrawn.Aim:This study aimed to describe carer and health professional experiences of end-of-life care of Motor Neurone Disease patients using non-invasive ventilation.Design/participants:This article reports data from qualitative interviews with family carers and professionals following the death of patients with Motor Neurone Disease who were using non-invasive ventilation in the final phase of the Disease.Results:Ten of the 20 patients initiated on non-invasive ventilation were using it in the end-of-life phase of their Disease, with 5 using it for 24 h/day. Interviews were carried out with nine family carers and 15 professionals. Nine recurring themes were identified in the data. Both carers and health-care pro...
Thomas H Gillingwater - One of the best experts on this subject based on the ideXlab platform.
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review neuromuscular synaptic vulnerability in Motor Neurone Disease amyotrophic lateral sclerosis and spinal muscular atrophy
Neuropathology and Applied Neurobiology, 2010Co-Authors: Lyndsay M Murray, Kevin Talbot, Thomas H GillingwaterAbstract:L. M. Murray, K. Talbot and T. H. Gillingwater (2010) Neuropathology and Applied Neurobiology36, 133–156 Neuromuscular synaptic vulnerability in Motor Neurone Disease: amyotrophic lateral sclerosis and spinal muscular atrophy Amid the great diversity of neurodegenerative conditions, there is a growing body of evidence that non-somatic (that is, synaptic and distal axonal) compartments of Neurones are early and important subcellular sites of pathological change. In this review we discuss experimental data from human patients, animal models and in vitro systems showing that neuromuscular synapses are targeted in different forms of Motor Neurone Disease (MND), including amyotrophic lateral sclerosis and spinal muscular atrophy. We highlight important developments revealing the heterogeneous nature of vulnerability in populations of lower Motor units in MND and examine how progress in our understanding of the molecular pathways underlying MND may provide insights into the regulation of synaptic vulnerability and pathology. We conclude that future experiments developing therapeutic approaches specifically targeting neuromuscular synaptic vulnerability are likely to be required to prevent or delay Disease onset and progression in human MND patients.
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review neuromuscular synaptic vulnerability in Motor Neurone Disease amyotrophic lateral sclerosis and spinal muscular atrophy
Neuropathology and Applied Neurobiology, 2010Co-Authors: Lyndsay M Murray, Kevin Talbot, Thomas H GillingwaterAbstract:Amid the great diversity of neurodegenerative conditions, there is a growing body of evidence that non-somatic (that is, synaptic and distal axonal) compartments of Neurones are early and important subcellular sites of pathological change. In this review we discuss experimental data from human patients, animal models and in vitro systems showing that neuromuscular synapses are targeted in different forms of Motor Neurone Disease (MND), including amyotrophic lateral sclerosis and spinal muscular atrophy. We highlight important developments revealing the heterogeneous nature of vulnerability in populations of lower Motor units in MND and examine how progress in our understanding of the molecular pathways underlying MND may provide insights into the regulation of synaptic vulnerability and pathology. We conclude that future experiments developing therapeutic approaches specifically targeting neuromuscular synaptic vulnerability are likely to be required to prevent or delay Disease onset and progression in human MND patients.
Mike Bradburn - One of the best experts on this subject based on the ideXlab platform.
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protocol for diaphragm pacing in patients with respiratory muscle weakness due to Motor Neurone Disease dipals a randomised controlled trial
BMC Neurology, 2012Co-Authors: Christopher J. Mcdermott, Chin Maguire, Cindy Cooper, Roger Ackroyd, Wendy Baird, Simon Baudouin, Andrew Bentley, Stephen Bianchi, Stephen Bourke, Mike BradburnAbstract:Background Motor Neurone Disease (MND) is a devastating illness which leads to muscle weakness and death, usually within 2-3 years of symptom onset. Respiratory insufficiency is a common cause of morbidity, particularly in later stages of MND and respiratory complications are the leading cause of mortality in MND patients. Non Invasive Ventilation (NIV) is the current standard therapy to manage respiratory insufficiency. Some MND patients however do not tolerate NIV due to a number of issues including mask interface problems and claustrophobia. In those that do tolerate NIV, eventually respiratory muscle weakness will progress to a point at which intermittent/overnight NIV is ineffective. The NeuRx RA/4 Diaphragm Pacing System was originally developed for patients with respiratory insufficiency and diaphragm paralysis secondary to stable high spinal cord injuries. The DiPALS study will assess the effect of diaphragm pacing (DP) when used to treat patients with MND and respiratory insufficiency.
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protocol for diaphragm pacing in patients with respiratory muscle weakness due to Motor Neurone Disease dipals a randomised controlled trial
BMC Neurology, 2012Co-Authors: Christopher J. Mcdermott, Chin Maguire, Cindy Cooper, Roger Ackroyd, Wendy Baird, Simon Baudouin, Andrew Bentley, Stephen Bianchi, S C Bourke, Mike BradburnAbstract:Motor Neurone Disease (MND) is a devastating illness which leads to muscle weakness and death, usually within 2-3 years of symptom onset. Respiratory insufficiency is a common cause of morbidity, particularly in later stages of MND and respiratory complications are the leading cause of mortality in MND patients. Non Invasive Ventilation (NIV) is the current standard therapy to manage respiratory insufficiency. Some MND patients however do not tolerate NIV due to a number of issues including mask interface problems and claustrophobia. In those that do tolerate NIV, eventually respiratory muscle weakness will progress to a point at which intermittent/overnight NIV is ineffective. The NeuRx RA/4 Diaphragm Pacing System was originally developed for patients with respiratory insufficiency and diaphragm paralysis secondary to stable high spinal cord injuries. The DiPALS study will assess the effect of diaphragm pacing (DP) when used to treat patients with MND and respiratory insufficiency. 108 patients will be recruited to the study at 5 sites in the UK. Patients will be randomised to either receive NIV (current standard care) or receive DP in addition to NIV. Study participants will be required to complete outcome measures at 5 follow up time points (2, 3, 6, 9 and 12 months) plus an additional surgery and 1 week post operative visit for those in the DP group. 12 patients (and their carers) from the DP group will also be asked to complete 2 qualitative interviews. The primary objective of this trial will be to evaluate the effect of Diaphragm Pacing (DP) on survival over the study duration in patients with MND with respiratory muscle weakness. The project is funded by the National Institute for Health Research, Health Technology Assessment (HTA) Programme (project number 09/55/33) and the Motor Neurone Disease Association and the Henry Smith Charity. Trial Registration: Current controlled trials ISRCTN53817913. The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HTA programme, NIHR, NHS or the Department of Health.
Wendy Baird - One of the best experts on this subject based on the ideXlab platform.
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the tim system developing a novel telehealth service to improve access to specialist care in Motor Neurone Disease using user centered design
Amyotrophic Lateral Sclerosis, 2018Co-Authors: Esther Hobson, Pamela J. Shaw, Cindy Cooper, Wendy Baird, Rebecca Partridge, Sue Mawson, Ann Quinn, Theresa Walsh, Daniel Wolstenholme, Christopher J. McdermottAbstract:AbstractObjectives: Attendance at a specialist multidisciplinary Motor Neurone Disease (MND) clinic is associated with improved survival and may also improve quality of life and reduce hospital admissions. However, patients struggle to travel to clinic and may experience difficulties between clinic visits that may not be addressed in a timely manner. We wanted to explore how we could improve access to specialist MND care. Methods: We adopted an iterative, user-centered co-design approach, collaborating with those with experience of providing and receiving MND care including patients, carers, clinicians, and technology developers. We explored the unmet needs of those living with MND, how they might be met through service redesign and through the use of digital technologies. We developed a new digital solution and performed initial testing with potential users including clinicians, patients, and carers. Results: We used these findings to develop a telehealth system (TiM) using an Android app into which pati...
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factors influencing decision making in relation to timing of gastrostomy insertion in patients with Motor Neurone Disease
BMJ, 2014Co-Authors: Theocharis Stavroulakis, Pamela J. Shaw, Wendy Baird, Susan Baxter, Theresa Walsh, Christopher J. McdermottAbstract:Objectives This study aimed to explore the decision-making process leading up to gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support Motor Neurone Disease patients with dysphagia. However, there is no robust evidence to suggest the optimal timing for gastrostomy insertion. Methods Retrospective qualitative exploration using semistructured interviews with paired patients and carers in order to elicit their perceptions in relation to gastrostomy timing. Results 27 patients consented to the study; of these, 23 underwent a successful gastrostomy. Approximately 3 months following a successful gastrostomy, 10 patients and 8 carers were interviewed. Decision-making in relation to the timing of gastrostomy was described as being a difficult process with individual variations and wishes. A range of factors acted as triggers for taking the decision to proceed with gastrostomy such as prolonged, tiring and effortful meals; the task of food preparation; choking and aspiration; and weight loss. Factors such as the reluctance to give up oral feeding, not realising the potential benefits and negative perceptions of gastrostomy influenced a decision to delay the procedure. A tendency for late insertion was identified despite the opposite advice by health professionals. Conclusions The advice for early insertion does not outweigh the personal perceptions and psychosocial factors for patients and their carers. Understanding the factors which influence decision-making on an individual basis is important for information and care provision by healthcare professionals in aiding patients, and their carers, to make informed decisions in relation to gastrostomy timing.
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the impact on the family carer of Motor Neurone Disease and intervention with noninvasive ventilation
Journal of Palliative Medicine, 2013Co-Authors: Susan Baxter, Pamela J. Shaw, Wendy Baird, Stephen Bianchi, Sue Thompson, Stephen J Walters, Ellen Lee, Sam H Ahmedzai, Alison Proctor, Christopher J. McdermottAbstract:Abstract Background: The diagnosis of Motor Neurone Disease (MND) has a profound effect on the functioning and well-being of both the patient and their family, with studies describing an increase in carer burden and depression as the Disease progresses. Aim: This study aimed to assess whether patient use of noninvasive ventilation (NIV) impacted on their family carer, and to explore other sources of carer burden. Design: The study used qualitative interviews and scaled measures of carer health and well-being completed at three monthly intervals until patient end of life. Participants: Sixteen family carers were followed up over a period ranging from one month to two years. Results: NIV was perceived as having little impact on carer burden. The data however highlighted a range of sources of other burdens relating to the physical strain of caring. The Medical Outcomes Study Short Form (SF-36 Health Survey) Physical Component Summary (PCS) scores were considerably below that of the Mental Component Summary (...
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the use of non invasive ventilation at end of life in patients with Motor Neurone Disease a qualitative exploration of family carer and health professional experiences
Palliative Medicine, 2013Co-Authors: Susan Baxter, Pamela J. Shaw, Wendy Baird, Stephen Bianchi, Sue Thompson, Stephen J Walters, Ellen Lee, Sam H Ahmedzai, Alison Proctor, Christopher J. McdermottAbstract:Background:Non-invasive ventilation improves quality and quantity of life in patients with Motor Neurone Disease who have respiratory failure. Use of non-invasive ventilation may, however, result in complex clinical issues for end-of-life care, with concerns as to whether and how it should be withdrawn.Aim:This study aimed to describe carer and health professional experiences of end-of-life care of Motor Neurone Disease patients using non-invasive ventilation.Design/participants:This article reports data from qualitative interviews with family carers and professionals following the death of patients with Motor Neurone Disease who were using non-invasive ventilation in the final phase of the Disease.Results:Ten of the 20 patients initiated on non-invasive ventilation were using it in the end-of-life phase of their Disease, with 5 using it for 24 h/day. Interviews were carried out with nine family carers and 15 professionals. Nine recurring themes were identified in the data. Both carers and health-care pro...
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protocol for diaphragm pacing in patients with respiratory muscle weakness due to Motor Neurone Disease dipals a randomised controlled trial
BMC Neurology, 2012Co-Authors: Christopher J. Mcdermott, Chin Maguire, Cindy Cooper, Roger Ackroyd, Wendy Baird, Simon Baudouin, Andrew Bentley, Stephen Bianchi, Stephen Bourke, Mike BradburnAbstract:Background Motor Neurone Disease (MND) is a devastating illness which leads to muscle weakness and death, usually within 2-3 years of symptom onset. Respiratory insufficiency is a common cause of morbidity, particularly in later stages of MND and respiratory complications are the leading cause of mortality in MND patients. Non Invasive Ventilation (NIV) is the current standard therapy to manage respiratory insufficiency. Some MND patients however do not tolerate NIV due to a number of issues including mask interface problems and claustrophobia. In those that do tolerate NIV, eventually respiratory muscle weakness will progress to a point at which intermittent/overnight NIV is ineffective. The NeuRx RA/4 Diaphragm Pacing System was originally developed for patients with respiratory insufficiency and diaphragm paralysis secondary to stable high spinal cord injuries. The DiPALS study will assess the effect of diaphragm pacing (DP) when used to treat patients with MND and respiratory insufficiency.