Multiplehttp://msj.sagepub.com/ Sclerosis Journal
RIMS 2014 - Abstracts Mult Scler 2014 20: 965 DOI: 10.1177/1352458514533628 The online version of this article can be found at: http://msj.sagepub.com/content/20/7/965
Published by: http://www.sagepublications.com
On behalf of: European Committee for Treatment and Research in Multiple Sclerosis
Americas Committee for Treatment and Research in Multiple Sclerosis
Pan-Asian Committee for Treatment and Research in Multiple Sclerosis
Latin American Committee on Treatment and Research of Multiple Sclerosis
Additional services and information for Multiple Sclerosis Journal can be found at: Email Alerts: http://msj.sagepub.com/cgi/alerts Subscriptions: http://msj.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
>> Version of Record - Jun 2, 2014 What is This?
Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
RIMS 2014 19th ANNUAL CONFERENCE JUNE 6–7, 2014 – BRIGHTON, UK
Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
Multiple Sclerosis Journal 20 (7) 2014
Contents Plenary sessions 3 Oral sessions 5 Bladder and bowel function 5 Exercise treatment 5 Health management, care, quality of life, economic burden 5 Motivating and supporting behaviour change 6 Neuroimaging and neurophysiology 8 Neuropsychology and Psychology 9 Outcome parameters 10 Rehabilitation of the motor system 11 Shared decision making, patient information, risk communication 12 Other 12 Posters 14 Adherence to treatments 14 Bladder and bowel function 17 Exercise treatment 17 Health management, care, quality of life, economic burden 22 Motivating and supporting behaviour change 26 Neuropsychology and Psychology 28 Outcome parameters 30 Pain 36 Rehabilitation of the motor system 36 Shared decision making, patient information, risk communication 43 Speech and swallowing 46 Other 47 Seminar sessions Sponsored Satellite Symposia RIMS Grants Author index
49 53 55 56
Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
Multiple Sclerosis Journal 2014; 20 (7) 965–966
Abstracts
Plenary sessions PL-1 Factors influencing behaviour change J. Bruce1 1University of Missouri, USA Multiple sclerosis (MS) is the most common neurologic illness among young and middle-aged adults, often striking in the prime of life with devastating effects. Although there is no cure for MS, medical and behavioral therapies have been shown to reduce disease flare-ups, slow disease progression, reduce symptoms and improve overall quality of life. Unfortunately, a near majority of patients may not receive these benefits due to poor treatment adherence. This presentation will discuss cognitive, emotional, lifestyle, and medical reasons for poor medication adherence in MS as well explore avenues for improving adherence to medical and behavioral rehabilitation health interventions. PL-2 Adjustment, acceptance and adherence R. Moss-Morris1 1King’s College, London, UK Adapting to chronic illness is a phrase commonly used in health care but there is little agreement on how to define this. Common operationalisations include presence or absence of psychopathology, or low negative effect and good functional status. A variety of psychological methodologies is currently used to study adaptation to chronic illness. Each explains some variance in adjustment outcomes but they provide only a limited view of factors which may impact adjustment. I will argue for a consistent overarching theory that is specific to chronic illness. I will draw from the multiple sclerosis (MS) literature to argue that adaptation is characterised by both a return to equilibrium after critical illness events (such as relapse or progression) and maintaining quality of life whilst managing on-going illness tasks or stressors (such as adhering to medication). I will discuss factors which have been shown to be related to good adjustment to MS such as acceptance of the illness, seeking social support, positively reinterpreting situations, good health behaviours and a sense of control over the illness. I will also consider factors related to worse adjustment in MS, such as high levels of perceived stress, perceiving MS and symptoms as threatening and avoidance coping strategies. I will show how we have used this information to design a cognitive behavioural therapy (CBT) programme to assist with adjustment to MS and a mindfulness programme for people with progressive MS. I will present data on the effectiveness of these interventions from recent randomised controlled trials (RCTs). Finally, I will discuss new directions for this work based on quantitative and qualitative analyses of the RCT findings. PL-3 Personal perspectives E. Rogan1, S. Pezaro2 1European MS Platform, 2The Fed Centre for Independent Living, Brighton, UK
From the mental trauma of a multiple sclerosis diagnosis to the everyday challenges of different life events, Shana Pezaro and Emma Rogan will talk about how they negotiate the upsets to restore and empower their lives. How does apathy affect physical health of people with MS and how can we give ourselves the best chance of living a life of good health and great personal success? Taking two different views, they will discuss how different forms of exercise (squats, sadistic PE, half-marathons and unplanned beach runs) and taking care of mental wellbeing is not only about managing current health but also about building resilience for the years ahead. PL-4 Incorporating behaviour change into (exercise) rehabilitation K. Pfeifer1 1University of Erlangen-Nurnberg, Germany The positive health enhancing effects of exercise, physical activity (PA) and sport, for the general population as well as for persons with neurological diseases like multiple sclerosis, stroke, or Parkinson’s disease, are indisputable. High potential lies in bio psychosocial physical activity and exercise interventions that target long-term changes of physical activity behaviour, and thus think beyond short intervention periods with mostly short-term effects on physical functions. Those behavioural interventions are related to the framework of the International Classification of Functioning, Disability and Health (ICF) of the World Health Organisation (WHO). In addition to the classical target area of restoration of body functions and structures these consider relevant activities and aspects of participation as well as personal context factors. Based upon recent psychological health behaviour change (HBC) theories and using the principles of intervention mapping we identified 28 exercise-related techniques that impact relevant modifiable personal factors of PA. These techniques were integrated into an ICF-based concept of a “Behavioural Exercise Therapy” (BET). This concept serves as a theory-driven ‘tool box’ for designing complex BET programmes to promote PA. In BET relevant contents and methods are didactically arranged on three intervention levels to enable the development of movement-related health competence: 1) physical exercise and training, 2) learning/education, and 3) experience. Movement-related health competence is composed of the three components: movement competence, control competence and selfregulation competence. It is regarded as a personal resource for the movement and mobility demands in daily life, for autonomous health enhancing physical activity and sport, and for coping with or adjustment to health disorders and diseases. PL-5 International sportive challenges to raise awareness of the abilities of people with MS P. van Asch1 1Fit Up & Physiotherapy Center, Kontich, Belgium Move to Sport is an organisation that gives education sessions for healthcare professionals, sport and fitness coaches so that people with multiple sclerosis (pwms) can participate in their
© 2014 SAGE Publications
10.1177/1352458514533628 Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
966
Plenary sessions 20 (7)
own environment at sport activities. Related to that we organise international sports events to raise awareness about MS in general but also about the abilities of pwms. This presentation will review some of the many international sports events we have organised in the past and show how this has influenced ideas about sport and MS, how different initiatives have been started across Belgium, and how we created a network of certified professionals. PL-6 Progressive MS Alliance - driving the rehabilitation agenda A. Thompson1 1UCL Faculty of Brain Sciences, University College London, London, UK The greatest challenge facing the world of multiple sclerosis (MS) is addressing the needs of people with progressive MS. They constitute over 50% of the MS population and have as yet no effective treatment to slow or stop the steady progression, which is the main determinant of disability. The key elements
of the management of this population are rehabilitation and symptom management but here again there are issues with few studies focussing on the progressive population, despite the fact that they have the greatest need. The quality and size of the studies in this area and the selection of outcome measure have been variable and limited. More recently there have been some encouraging studies which have demonstrated what is potentially achievable. To address this outstanding need, the Progressive MS Alliance has incorporated both rehabilitation and symptomatic management as one of the four pillars of its research strategy. It has recently brought together key opinion leaders along with experts in trial design, outcome measures and statistics to encourage innovative studies which will seek to address both cognitive and motor dysfunction. If we are to improve the quality of life of people with progressive MS, this has to be a key focus for research in the decade ahead, alongside treatments that will delay and eventually prevent progression.
Multiple Sclerosis Journal 2014; 20: (7) 965–966 Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
msj.sagepub.com
Multiple Sclerosis Journal 2014; 20 (7) 967–975
Abstracts
Oral sessions Bladder and bowel function O-1 An exploration of the impact of bladder dysfunction experienced by people with multiple sclerosis C. Browne1, N. Salmon1, M. Kehoe1 1University of Limerick, Limerick, Ireland Background: Bladder dysfunction can affect up to 75% of people with multiple sclerosis (PwMS). This symptom is frequently overlooked, as there is a reluctance to seek advice and treatment for continence issues in this population. Bladder dysfunction significantly reduces health-related quality of life (HRQoL) among PwMS. However, the specific aspects of bladder dysfunction that reduce HRQoL remain unknown. Aim: The aim of this study was to identify specific aspects of bladder dysfunction that reduces quality of life for PwMS. Methods: Participants were identified using purposive sampling techniques from multiple branches of the Multiple Sclerosis Society of Ireland. Individual semi-structured interviews were conducted with 19 PwMS, who had at least one bladder dysfunction symptom. Each interview lasted up to 60 minutes. Findings: Thematic content analysis completed using Nvivo10 yielded two key themes. Theme 1 “Loss and Disruption” describes the specific aspects of bladder dysfunction which disrupt everyday life. Participants discussed how fatigue was increased due to both the physical disruption and emotional distress of having to constantly plan around their bladder symptoms. This results in reduced participation and suggests that bladder dysfunction may be a contributing factor to fatigue among PwMS. Theme 2 “Ways of Knowing” includes embodied knowledge which allows PwMS to gain a deep understanding of how their bladder symptoms affect their bodies. Participants described how they use this knowledge to self- manage their symptoms. The lack of knowledge portrayed by participants around the current healthcare service suggest that PwMS are self-managing without the additional expertise knowledge from the healthcare system. Conclusions: This study demonstrates important findings for healthcare professionals to consider. Bladder dysfunction results in major disturbances in the lives of PwMS which leads to emotional distress and reduced participation. PwMS attempt to self-manage and express limited knowledge in accessing and navigating healthcare services in relation to this symptom.
Exercise treatment O-2 Associations of physical activity with health outcomes in a large international sample of people with MS C. Marck1, E. Hadgkiss1, T. Weiland1, 2, D. van der Meer1, N. Pereira3, G. Jelinek1, 4 1Emergency Practice Innovation Centre, St Vincent’s Hospital, Melbourne, Victoria, Australia; 2Department of Medicine, The University of Melbourne (St Vincent’s Hospital),
Melbourne, Victoria, Australia; 3Faculty of Medicine, Notre Dame University, Fremantle, Western Australia, Australia; 4Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia Background: People with multiple sclerosis (PwMS) are often advised to rest and conserve energy but recent literature has challenged this view. Several studies have shown positive effects of physical activity (PA) on disability, health related quality of life (HRQOL), and other outcomes, however, some of the evidence is inconclusive. Many studies include only people with mild disability making it difficult to generalize findings to those with moderate or severe disability. Aims: To investigate the associations between PA and HRQOL, relapse rate (RR), disability, and demographic variables in PwMS. Methods: Through online platforms this large international survey recruited 2232 participants with MS who completed items regarding PA, MS and other health characteristics using validated tools such as the International Physical Activity Questionnaire (IPAQ) short form and the Multiple Sclerosis Quality Of Life-54 (MSQOL-54). Participants were over 18 years and consented. The study was approved by the institutional ethics committee. Results: Increased PA was associated with decreased disability (p
RIMS 2014 - Abstracts Mult Scler 2014 20: 965 DOI: 10.1177/1352458514533628 The online version of this article can be found at: http://msj.sagepub.com/content/20/7/965
Published by: http://www.sagepublications.com
On behalf of: European Committee for Treatment and Research in Multiple Sclerosis
Americas Committee for Treatment and Research in Multiple Sclerosis
Pan-Asian Committee for Treatment and Research in Multiple Sclerosis
Latin American Committee on Treatment and Research of Multiple Sclerosis
Additional services and information for Multiple Sclerosis Journal can be found at: Email Alerts: http://msj.sagepub.com/cgi/alerts Subscriptions: http://msj.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
>> Version of Record - Jun 2, 2014 What is This?
Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
RIMS 2014 19th ANNUAL CONFERENCE JUNE 6–7, 2014 – BRIGHTON, UK
Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
Multiple Sclerosis Journal 20 (7) 2014
Contents Plenary sessions 3 Oral sessions 5 Bladder and bowel function 5 Exercise treatment 5 Health management, care, quality of life, economic burden 5 Motivating and supporting behaviour change 6 Neuroimaging and neurophysiology 8 Neuropsychology and Psychology 9 Outcome parameters 10 Rehabilitation of the motor system 11 Shared decision making, patient information, risk communication 12 Other 12 Posters 14 Adherence to treatments 14 Bladder and bowel function 17 Exercise treatment 17 Health management, care, quality of life, economic burden 22 Motivating and supporting behaviour change 26 Neuropsychology and Psychology 28 Outcome parameters 30 Pain 36 Rehabilitation of the motor system 36 Shared decision making, patient information, risk communication 43 Speech and swallowing 46 Other 47 Seminar sessions Sponsored Satellite Symposia RIMS Grants Author index
49 53 55 56
Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
Multiple Sclerosis Journal 2014; 20 (7) 965–966
Abstracts
Plenary sessions PL-1 Factors influencing behaviour change J. Bruce1 1University of Missouri, USA Multiple sclerosis (MS) is the most common neurologic illness among young and middle-aged adults, often striking in the prime of life with devastating effects. Although there is no cure for MS, medical and behavioral therapies have been shown to reduce disease flare-ups, slow disease progression, reduce symptoms and improve overall quality of life. Unfortunately, a near majority of patients may not receive these benefits due to poor treatment adherence. This presentation will discuss cognitive, emotional, lifestyle, and medical reasons for poor medication adherence in MS as well explore avenues for improving adherence to medical and behavioral rehabilitation health interventions. PL-2 Adjustment, acceptance and adherence R. Moss-Morris1 1King’s College, London, UK Adapting to chronic illness is a phrase commonly used in health care but there is little agreement on how to define this. Common operationalisations include presence or absence of psychopathology, or low negative effect and good functional status. A variety of psychological methodologies is currently used to study adaptation to chronic illness. Each explains some variance in adjustment outcomes but they provide only a limited view of factors which may impact adjustment. I will argue for a consistent overarching theory that is specific to chronic illness. I will draw from the multiple sclerosis (MS) literature to argue that adaptation is characterised by both a return to equilibrium after critical illness events (such as relapse or progression) and maintaining quality of life whilst managing on-going illness tasks or stressors (such as adhering to medication). I will discuss factors which have been shown to be related to good adjustment to MS such as acceptance of the illness, seeking social support, positively reinterpreting situations, good health behaviours and a sense of control over the illness. I will also consider factors related to worse adjustment in MS, such as high levels of perceived stress, perceiving MS and symptoms as threatening and avoidance coping strategies. I will show how we have used this information to design a cognitive behavioural therapy (CBT) programme to assist with adjustment to MS and a mindfulness programme for people with progressive MS. I will present data on the effectiveness of these interventions from recent randomised controlled trials (RCTs). Finally, I will discuss new directions for this work based on quantitative and qualitative analyses of the RCT findings. PL-3 Personal perspectives E. Rogan1, S. Pezaro2 1European MS Platform, 2The Fed Centre for Independent Living, Brighton, UK
From the mental trauma of a multiple sclerosis diagnosis to the everyday challenges of different life events, Shana Pezaro and Emma Rogan will talk about how they negotiate the upsets to restore and empower their lives. How does apathy affect physical health of people with MS and how can we give ourselves the best chance of living a life of good health and great personal success? Taking two different views, they will discuss how different forms of exercise (squats, sadistic PE, half-marathons and unplanned beach runs) and taking care of mental wellbeing is not only about managing current health but also about building resilience for the years ahead. PL-4 Incorporating behaviour change into (exercise) rehabilitation K. Pfeifer1 1University of Erlangen-Nurnberg, Germany The positive health enhancing effects of exercise, physical activity (PA) and sport, for the general population as well as for persons with neurological diseases like multiple sclerosis, stroke, or Parkinson’s disease, are indisputable. High potential lies in bio psychosocial physical activity and exercise interventions that target long-term changes of physical activity behaviour, and thus think beyond short intervention periods with mostly short-term effects on physical functions. Those behavioural interventions are related to the framework of the International Classification of Functioning, Disability and Health (ICF) of the World Health Organisation (WHO). In addition to the classical target area of restoration of body functions and structures these consider relevant activities and aspects of participation as well as personal context factors. Based upon recent psychological health behaviour change (HBC) theories and using the principles of intervention mapping we identified 28 exercise-related techniques that impact relevant modifiable personal factors of PA. These techniques were integrated into an ICF-based concept of a “Behavioural Exercise Therapy” (BET). This concept serves as a theory-driven ‘tool box’ for designing complex BET programmes to promote PA. In BET relevant contents and methods are didactically arranged on three intervention levels to enable the development of movement-related health competence: 1) physical exercise and training, 2) learning/education, and 3) experience. Movement-related health competence is composed of the three components: movement competence, control competence and selfregulation competence. It is regarded as a personal resource for the movement and mobility demands in daily life, for autonomous health enhancing physical activity and sport, and for coping with or adjustment to health disorders and diseases. PL-5 International sportive challenges to raise awareness of the abilities of people with MS P. van Asch1 1Fit Up & Physiotherapy Center, Kontich, Belgium Move to Sport is an organisation that gives education sessions for healthcare professionals, sport and fitness coaches so that people with multiple sclerosis (pwms) can participate in their
© 2014 SAGE Publications
10.1177/1352458514533628 Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
966
Plenary sessions 20 (7)
own environment at sport activities. Related to that we organise international sports events to raise awareness about MS in general but also about the abilities of pwms. This presentation will review some of the many international sports events we have organised in the past and show how this has influenced ideas about sport and MS, how different initiatives have been started across Belgium, and how we created a network of certified professionals. PL-6 Progressive MS Alliance - driving the rehabilitation agenda A. Thompson1 1UCL Faculty of Brain Sciences, University College London, London, UK The greatest challenge facing the world of multiple sclerosis (MS) is addressing the needs of people with progressive MS. They constitute over 50% of the MS population and have as yet no effective treatment to slow or stop the steady progression, which is the main determinant of disability. The key elements
of the management of this population are rehabilitation and symptom management but here again there are issues with few studies focussing on the progressive population, despite the fact that they have the greatest need. The quality and size of the studies in this area and the selection of outcome measure have been variable and limited. More recently there have been some encouraging studies which have demonstrated what is potentially achievable. To address this outstanding need, the Progressive MS Alliance has incorporated both rehabilitation and symptomatic management as one of the four pillars of its research strategy. It has recently brought together key opinion leaders along with experts in trial design, outcome measures and statistics to encourage innovative studies which will seek to address both cognitive and motor dysfunction. If we are to improve the quality of life of people with progressive MS, this has to be a key focus for research in the decade ahead, alongside treatments that will delay and eventually prevent progression.
Multiple Sclerosis Journal 2014; 20: (7) 965–966 Downloaded from msj.sagepub.com at TEXAS SOUTHERN UNIVERSITY on October 15, 2014
msj.sagepub.com
Multiple Sclerosis Journal 2014; 20 (7) 967–975
Abstracts
Oral sessions Bladder and bowel function O-1 An exploration of the impact of bladder dysfunction experienced by people with multiple sclerosis C. Browne1, N. Salmon1, M. Kehoe1 1University of Limerick, Limerick, Ireland Background: Bladder dysfunction can affect up to 75% of people with multiple sclerosis (PwMS). This symptom is frequently overlooked, as there is a reluctance to seek advice and treatment for continence issues in this population. Bladder dysfunction significantly reduces health-related quality of life (HRQoL) among PwMS. However, the specific aspects of bladder dysfunction that reduce HRQoL remain unknown. Aim: The aim of this study was to identify specific aspects of bladder dysfunction that reduces quality of life for PwMS. Methods: Participants were identified using purposive sampling techniques from multiple branches of the Multiple Sclerosis Society of Ireland. Individual semi-structured interviews were conducted with 19 PwMS, who had at least one bladder dysfunction symptom. Each interview lasted up to 60 minutes. Findings: Thematic content analysis completed using Nvivo10 yielded two key themes. Theme 1 “Loss and Disruption” describes the specific aspects of bladder dysfunction which disrupt everyday life. Participants discussed how fatigue was increased due to both the physical disruption and emotional distress of having to constantly plan around their bladder symptoms. This results in reduced participation and suggests that bladder dysfunction may be a contributing factor to fatigue among PwMS. Theme 2 “Ways of Knowing” includes embodied knowledge which allows PwMS to gain a deep understanding of how their bladder symptoms affect their bodies. Participants described how they use this knowledge to self- manage their symptoms. The lack of knowledge portrayed by participants around the current healthcare service suggest that PwMS are self-managing without the additional expertise knowledge from the healthcare system. Conclusions: This study demonstrates important findings for healthcare professionals to consider. Bladder dysfunction results in major disturbances in the lives of PwMS which leads to emotional distress and reduced participation. PwMS attempt to self-manage and express limited knowledge in accessing and navigating healthcare services in relation to this symptom.
Exercise treatment O-2 Associations of physical activity with health outcomes in a large international sample of people with MS C. Marck1, E. Hadgkiss1, T. Weiland1, 2, D. van der Meer1, N. Pereira3, G. Jelinek1, 4 1Emergency Practice Innovation Centre, St Vincent’s Hospital, Melbourne, Victoria, Australia; 2Department of Medicine, The University of Melbourne (St Vincent’s Hospital),
Melbourne, Victoria, Australia; 3Faculty of Medicine, Notre Dame University, Fremantle, Western Australia, Australia; 4Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia Background: People with multiple sclerosis (PwMS) are often advised to rest and conserve energy but recent literature has challenged this view. Several studies have shown positive effects of physical activity (PA) on disability, health related quality of life (HRQOL), and other outcomes, however, some of the evidence is inconclusive. Many studies include only people with mild disability making it difficult to generalize findings to those with moderate or severe disability. Aims: To investigate the associations between PA and HRQOL, relapse rate (RR), disability, and demographic variables in PwMS. Methods: Through online platforms this large international survey recruited 2232 participants with MS who completed items regarding PA, MS and other health characteristics using validated tools such as the International Physical Activity Questionnaire (IPAQ) short form and the Multiple Sclerosis Quality Of Life-54 (MSQOL-54). Participants were over 18 years and consented. The study was approved by the institutional ethics committee. Results: Increased PA was associated with decreased disability (p
