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Autonomic dysfunction is a major contributor to impaired health-related quality of life in advanced PD
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Abstracts / Basal Ganglia 8 (2017) 1–22
Workshops & Seminals Health-related quality of life in Parkinson’s disease analysed with the WHO-developed ICF model Janet van Uem Department of Neurodegenerative Diseases and Hertie Institute for Clinical Brain Research, University of Tuebingen, Tuebingen, Germany Parkinson’s disease (PD) affects many aspects of Health-RelatedQuality of Life (HRQoL) of people suffering from the disease. The International Classification of Function, disability and health (ICF) model provides an architecture to structure an individual’s health and features affecting health. Moreover, this model can be used to analyse health status. We used the ICF model to structure features of PD affecting HRQoL. Features were aligned with the ICF’s domains: body functions and structures, activities, participation, environmental factors and personal factors. Moreover, we developed an algorithm to rank these features and compare them across the different ICF domains. The feature psychosocial functioning from the participation domain was identified to constrain HRQoL most severely. Activity limitations of the activity domain ranked second, and depression from the body functions and structures domain ranked third. These results demonstrate the importance of psychosocial functioning and social participation in daily life for people with PD. A second conclusion out of these results is that features belonging to the body functions domain are most frequently investigated but do not seem to play to most important role across different ICF domains for HRQoL in PD. The ICF model showed to be of great value in this analysis approach, and may be of value also for HRQoL evaluation in other chronic diseases. http://dx.doi.org/10.1016/j.baga.2017.02.051 Autonomic dysfunction is a major contributor to impaired health-related quality of life in advanced PD Aristide Merola Gardner Family Center for Parkinson’s Disease and Movement Disorders, Department of Neurology, University of Cincinnati, Cincinnati, OH, USA Autonomic neuropathy (AN) represents an overlooked but frequent feature of Parkinson disease, which may result in orthostatic hypotension (OH) and other cardiovascular impairments as well as gastrointestinal, thermoregulatory, pupillomotor, urinary and sexual dysfunctions, as documented by the Scale for Outcomes in Parkinson’s Disease-Autonomic (SCOPA-AUT). AN is frequently underdiagnosed and undertreated by clinicians, partly because of its vague and non-specific clinical presentation, and partly because of the lack of standardized therapeutic protocols. OH, in particular, contributes to the risk of falls by worsening gait and postural stability, challenging the management of PD patients with dysautonomia since dopaminergic replacement strategies improve motor disability at the expense of worsening autonomic dysfunction. It has been estimated that approximately 80,000 hospitalizations/year in the United States are related to OH, with an average in-hospital stay of 3 days, and an overall mortality of 0.9%. Only one half of PD-OH cases, however, report postural lightheadedness, which prompts OH screening. Others may be asymptomatic or complain of weakness, confusion, or difficulty concentrating, which may not be considered related to OH and are not adequately captured by
clinical questionnaires. Both symptomatic and asymptomatic OH, however, represents a source of significant disability in PD. http://dx.doi.org/10.1016/j.baga.2017.02.052 How to explain patient’s unsatisfaction with deep brain stimulation with great overall results in studies? A vivid example of multi-dimensional aspects in quality of life Lars Timmermann Department of Neurology, University Hospital Marburg, Germany Deep brain stimulation has been established as a promising therapeutic option in patients with motor complications in Parkinson’s disease. A number of well-performed randomized trials demonstrated a significant improvement in PD-related quality of life as well as in motor scales. However, in patients internet chats, patient groups as well as interviews with patients and their caregivers satisfaction with the intervention of deep brain stimulation is remarkably lower than the study results might suggest. A number of potential reasons might cause this paradox: (i) patients expectations are not considered, (ii) important aspects of satisfaction are neglected by current scales assessing quality of life in patients, and (iii) visibility of patients not satisfied with DBS is higher than patients who are really satisfied. New scales as well as new approaches in patient consultation in the DBS centers might be necessary to overcome these problems. http://dx.doi.org/10.1016/j.baga.2017.02.053 Clinical characteristics and therapy of cognitive disorders in Parkinson’s disease Susanne Gräber 1,2 1
ZAR Tübingen am Universitätsklinikum Zentrum für ambulanten Rehabilitation and German Center for Neurodegenerative Diseases (DZNE), University Tübingen, Germany 2 German Center for Neurodegenerative Diseases, Tübingen, Germany Cognitive deterioration in Parkinson’s disease (PD) is frequent and can have a high negative impact on patients’ quality of life. Point prevalence of Parkinson’s disease dementia (PDD) is close to 30% among PD-patients, while annually approximately 7% of all PDpatients progress to PDD with an increased risk for development of PDD in later disease stages. Cognitive loss in PD is a continuous progressive process, mostly affecting memory, visuospatial and attention/executive abilities. According to the recommendation of the Movement Disorder Society (MDS) Task Force, PDD is characterized by deterioration in at least two cognitive domains lowering patient’s ability to manage their daily life. Mild cognitive impairment in PD (PD-MCI) reflects cognitive deterioration at an early stage. PD-MCI patients have a higher conversion rate to PDD, which underlines the importance of a valid PD-MCI diagnosis. Further risk factors for PDD are older age, onset of hallucinations/depression, a postural instability and gait disorder and less responsiveness to levodopa in the disease course. Current pharmacologic treatment is based on cholinesterase inhibitors (ChEIs) which can ameliorate cognitive abilities and daily living function. Recent studies suggest that the use of memantine acting on the glutamatergic system by blocking NMDA receptors also have the potential to treat symptoms of PDD. Besides pharmacological treatment there is a growing
Abstracts / Basal Ganglia 8 (2017) 1–22
Workshops & Seminals Health-related quality of life in Parkinson’s disease analysed with the WHO-developed ICF model Janet van Uem Department of Neurodegenerative Diseases and Hertie Institute for Clinical Brain Research, University of Tuebingen, Tuebingen, Germany Parkinson’s disease (PD) affects many aspects of Health-RelatedQuality of Life (HRQoL) of people suffering from the disease. The International Classification of Function, disability and health (ICF) model provides an architecture to structure an individual’s health and features affecting health. Moreover, this model can be used to analyse health status. We used the ICF model to structure features of PD affecting HRQoL. Features were aligned with the ICF’s domains: body functions and structures, activities, participation, environmental factors and personal factors. Moreover, we developed an algorithm to rank these features and compare them across the different ICF domains. The feature psychosocial functioning from the participation domain was identified to constrain HRQoL most severely. Activity limitations of the activity domain ranked second, and depression from the body functions and structures domain ranked third. These results demonstrate the importance of psychosocial functioning and social participation in daily life for people with PD. A second conclusion out of these results is that features belonging to the body functions domain are most frequently investigated but do not seem to play to most important role across different ICF domains for HRQoL in PD. The ICF model showed to be of great value in this analysis approach, and may be of value also for HRQoL evaluation in other chronic diseases. http://dx.doi.org/10.1016/j.baga.2017.02.051 Autonomic dysfunction is a major contributor to impaired health-related quality of life in advanced PD Aristide Merola Gardner Family Center for Parkinson’s Disease and Movement Disorders, Department of Neurology, University of Cincinnati, Cincinnati, OH, USA Autonomic neuropathy (AN) represents an overlooked but frequent feature of Parkinson disease, which may result in orthostatic hypotension (OH) and other cardiovascular impairments as well as gastrointestinal, thermoregulatory, pupillomotor, urinary and sexual dysfunctions, as documented by the Scale for Outcomes in Parkinson’s Disease-Autonomic (SCOPA-AUT). AN is frequently underdiagnosed and undertreated by clinicians, partly because of its vague and non-specific clinical presentation, and partly because of the lack of standardized therapeutic protocols. OH, in particular, contributes to the risk of falls by worsening gait and postural stability, challenging the management of PD patients with dysautonomia since dopaminergic replacement strategies improve motor disability at the expense of worsening autonomic dysfunction. It has been estimated that approximately 80,000 hospitalizations/year in the United States are related to OH, with an average in-hospital stay of 3 days, and an overall mortality of 0.9%. Only one half of PD-OH cases, however, report postural lightheadedness, which prompts OH screening. Others may be asymptomatic or complain of weakness, confusion, or difficulty concentrating, which may not be considered related to OH and are not adequately captured by
clinical questionnaires. Both symptomatic and asymptomatic OH, however, represents a source of significant disability in PD. http://dx.doi.org/10.1016/j.baga.2017.02.052 How to explain patient’s unsatisfaction with deep brain stimulation with great overall results in studies? A vivid example of multi-dimensional aspects in quality of life Lars Timmermann Department of Neurology, University Hospital Marburg, Germany Deep brain stimulation has been established as a promising therapeutic option in patients with motor complications in Parkinson’s disease. A number of well-performed randomized trials demonstrated a significant improvement in PD-related quality of life as well as in motor scales. However, in patients internet chats, patient groups as well as interviews with patients and their caregivers satisfaction with the intervention of deep brain stimulation is remarkably lower than the study results might suggest. A number of potential reasons might cause this paradox: (i) patients expectations are not considered, (ii) important aspects of satisfaction are neglected by current scales assessing quality of life in patients, and (iii) visibility of patients not satisfied with DBS is higher than patients who are really satisfied. New scales as well as new approaches in patient consultation in the DBS centers might be necessary to overcome these problems. http://dx.doi.org/10.1016/j.baga.2017.02.053 Clinical characteristics and therapy of cognitive disorders in Parkinson’s disease Susanne Gräber 1,2 1
ZAR Tübingen am Universitätsklinikum Zentrum für ambulanten Rehabilitation and German Center for Neurodegenerative Diseases (DZNE), University Tübingen, Germany 2 German Center for Neurodegenerative Diseases, Tübingen, Germany Cognitive deterioration in Parkinson’s disease (PD) is frequent and can have a high negative impact on patients’ quality of life. Point prevalence of Parkinson’s disease dementia (PDD) is close to 30% among PD-patients, while annually approximately 7% of all PDpatients progress to PDD with an increased risk for development of PDD in later disease stages. Cognitive loss in PD is a continuous progressive process, mostly affecting memory, visuospatial and attention/executive abilities. According to the recommendation of the Movement Disorder Society (MDS) Task Force, PDD is characterized by deterioration in at least two cognitive domains lowering patient’s ability to manage their daily life. Mild cognitive impairment in PD (PD-MCI) reflects cognitive deterioration at an early stage. PD-MCI patients have a higher conversion rate to PDD, which underlines the importance of a valid PD-MCI diagnosis. Further risk factors for PDD are older age, onset of hallucinations/depression, a postural instability and gait disorder and less responsiveness to levodopa in the disease course. Current pharmacologic treatment is based on cholinesterase inhibitors (ChEIs) which can ameliorate cognitive abilities and daily living function. Recent studies suggest that the use of memantine acting on the glutamatergic system by blocking NMDA receptors also have the potential to treat symptoms of PDD. Besides pharmacological treatment there is a growing