Quality of Life Measurement in Neurodegenerative and Related Conditions


Book Description

Patient reported outcome measures are central to the evaluation of medical care and treatment regimes. Such measures depart from traditional clinical assessments as they are based on issues known to be of importance to patients. This book outlines the development and application of a variety of such measures in a wide range of neurological conditions. Introductory chapters outline issues in the application and validation of quality-of-life measures in neurology. Subsequent chapters survey the most widely used quality-of-life instruments in Parkinson's disease, motor neurone disease, multiple sclerosis, multiple system atrophy, progressive supranuclear palsy, and Alzheimer's/dementia. A chapter on cerebral palsy deals with the particular challenges to developing outcome measures for children. The book also addresses issues relating to the translation of measures for use in cross-cultural studies, handling missing data, carer experiences of long-term conditions, and methodological challenges. Essential reading for clinicians and researchers working in the field of neurology.







Children and Young People’s Response to Parental Illness


Book Description

Assessment of the impact of parental illness has gathered significant momentum over recent years. This book provides an up-to-date guide, for a variety of professionals, on how a range of conditions might impact upon children and young people. Each chapter provides an overview of current literature, an evaluation of relevant interventions, an ‘in practice’ section that provides guidance for readers in terms of best practice, and future research directions. Although the primary focus of the book is directed at children’s and young people’s response to their parent’s condition, the challenges of parenting are also frequently highlighted. Additionally, the text provides an overview of measurement issues when investigating children’s and young people’s response to parental illness.




Amyotrophic Lateral Sclerosis


Book Description

Amyotrophic Lateral Sclerosis (ALS) is a devastating neurodegenerative disorder with a progressive and fatal course, with no known medical therapies that can reverse the disease or halt its progression. Palliative care is the mainstay of disease management, aimed at maximizing Quality Of Life (QOL) for the patient and caregiver. Clinicians caring for patients with ALS need to understand complex psychological issues in the patient and caregiver, including depression, anxiety, hopelessness, and wish for hastened death (physician-assisted suicide). They also need to confront the psychological implications of rapidly advancing genetic research, the impact of cognitive and behavioural dysfunction in a sizable minority of ALS patients, and caregiver burnout. Healthcare providers can optimize care by better understanding not only these factors, but by learning how to facilitate their management with problem-solving, coping techniques, and with psychologically-based approaches such as mindfulness and other non-pharmacological approaches aimed at maximizing QOL. Amyotrophic Lateral Sclerosis: Understanding and Optimizing Quality of Life and Psychological Well-Being provides a detailed review and evaluation of ALS, presented in a comprehensive and integrated fashion. The book achieves this through detailed and up-to-date information about the current state of knowledge in this field. It also offers new insights regarding future directions for research. This book will provide clinicians with a comprehensive description of the psychological aspects of ALS and their management, and incorporates chapters written by recognized scholars in their respective fields.




Guide to Assessment Scales in Parkinson’s Disease


Book Description

This Guide assesses the key clinimetric attributes in the assessment of Parkinson's Disease (PD), with the intention to offer rapid and pragmatic information on the most relevant scales used in PD. Parkinson’s disease affects approximately 4 million people globally and is most commonly seen in people over the age of 50. The disease is a progressive disorder of the nervous system, and presents a number of movement and cognitive symptoms, thereby greatly affecting a patients quality of life. The use of scales for assessment in neurological disorders such as PD arises from the need to quantify disorders and states (such constructs as disability, symptoms, quality of life). Assessment scales are often categorised into two categories: generic (i.e. those scales usable in any health condition), and specific (i.e. scales developed for exclusive use in PD). They can have a variety of components: single-item and multi-item or composite scale; unidimensional and multidimensional; and as disease-centered and patient-centered measures. The creation and validation of scales is complex, with scales undergoing numerous studies to assess criteria such as acceptability, reliability, and responsiveness. In the process of validation of a scale the following attributes should be tested to ascertain whether a scale is an effective instrument of measurement.




Neurodegenerative Diseases


Book Description

Presents a thorough examination of the unifying principles from the subcellular to the systems and clinical levels; Identifies common themes among molecular biology, genetics, physiology, pathology, biomarkers, behavior, and treatment strategies that are shared between neurodegenerative diseases; Enables better care of patients and help build collaboration across researchers in multiple specializations that could help advance future insights and facilitate novel therapies and enhancing basic scientific understanding of these diseases to a new generation.




The Hippocampus in Clinical Neuroscience


Book Description

The hippocampus is one of the most intriguing structures of the human brain. Damage to this part causes symptoms ranging from transient disorders accompanied by tiny lesions to severely debilitating cognitive disorders with marked tissue loss. This publication provides a predominantly clinical approach to the complex workings of the hippocampus from different perspectives, ranging from basic principles to specific diseases. The first part of the book summarizes current knowledge regarding the structure and physiology of the hippocampus and establishes the ties to basic neuroscience. The second part deals with the function and assessment of the human hippocampus, including memory function, neuropsychological measures, and conventional and functional imaging studies. The chapters of the third part are devoted to the hippocampus in neurological disorders, e.g. the interaction between stress and memory function, and the pathological conditions of common as well as selected rare neurological diseases affecting the hippocampus. The book is highly recommended to clinical neurologists who wish to gain a broad understanding of this complex and fascinating organ in terms of basic principles, modern imaging findings, and specific diseases.




Disease-Modifying Targets in Neurodegenerative Disorders


Book Description

Disease-Modifying Targets in Neurodegenerative Disorders: Paving the Way for Disease-Modifying Therapies examines specific neurodegenerative disorders in comprehensive chapters written by experts in the respective fields. Each chapter contains a summary of the disease management field, subsequently elaborating on the molecular mechanisms and promising new targets for disease-modifying therapies. This overview is ideal for neuroscientists, biomedical researchers, medical doctors, and caregivers, not only providing readers with a summary of the way patients are treated today, but also offering a glance at the future of neurodegenerative disorder treatment. - Provides a comprehensive overview of how key proteins in neurodegenerative disorders can be used as targets to modify disease progress - Summarizes how patients are treated today, providing a glance at future disease management - Includes intelligible and informative information that is perfect for non-specialists, medical practitioners, and scientists - Written and peer reviewed by outstanding scientists in their respective fields




Precision Medicine in Neurodegenerative Disorders


Book Description

Precision Medicine in Neurodegenerative Disorders, Part One, Volume 192 in the Handbook of Clinical Neurology deals with the "Why" in the approach to slow the progression of accelerated brain aging. This volume is intended to provide a scholarly background on the framework, basic science and conceptual pitfalls related to disease-modifying efforts in Parkinson's, Alzheimer's and other neurodegenerative disorders. Among topics covered are different models of precision medicine, the lumping-versus-splitting tension in biomarker development and therapeutics, and the rationale for replacing the convergence of the prevailing autopsy-based nosology of neurodegenerative diseases with the divergence of a systems biology approach to human diseases. Specific chapters are dedicated to the promise of genetic subtypes and the lessons in disease modification offered by the fields of oncology and cystic fibrosis that can be adapted to the field of neurodegeneration. Matching a biology-correcting therapy with those biologically suitable to benefit from such therapy represents the vision and mission of precision medicine, the highest level of personalized medicine. - Summarizes theory and research on precision medicine in neurodegenerative disorders - Covers basic biology, clinical trials and therapeutics - Includes disease mechanisms, genetic subtypes, and more




Guiding Principles for Developing Dietary Reference Intakes Based on Chronic Disease


Book Description

Since 1938 and 1941, nutrient intake recommendations have been issued to the public in Canada and the United States, respectively. Currently defined as the Dietary Reference Intakes (DRIs), these values are a set of standards established by consensus committees under the National Academies of Sciences, Engineering, and Medicine and used for planning and assessing diets of apparently healthy individuals and groups. In 2015, a multidisciplinary working group sponsored by the Canadian and U.S. government DRI steering committees convened to identify key scientific challenges encountered in the use of chronic disease endpoints to establish DRI values. Their report, Options for Basing Dietary Reference Intakes (DRIs) on Chronic Disease: Report from a Joint US-/Canadian-Sponsored Working Group, outlined and proposed ways to address conceptual and methodological challenges related to the work of future DRI Committees. This report assesses the options presented in the previous report and determines guiding principles for including chronic disease endpoints for food substances that will be used by future National Academies committees in establishing DRIs.