Amyotrophic Lateral Sclerosis: A Patient Care Guide for Clinicians is a practical
reference for clinicians caring for ALS patients that brings together the collective
wisdom of those at the forefront of patient-oriented research and practice.
The book compiles recent findings of both evidence-based and experience-based
research to provide clinicians with tools that improve quality and length of
life for people with ALS.
To present a truly multidisciplinary approach to ALS, this book mirrors the organization of a large clinic with separate departments working collaboratively. It begins with a review of current understandings of ALS including diagnostic criteria, genetic and sporadic subtypes, epidemiology, co-morbidities, and prognosis. From there the book is divided into chapters that include neurological assessment, nursing care and coordination, speech and swallowing interventions, nutrition and nutrition therapy, physical therapy, occupational therapy, respiratory therapy, assistive technology, social work practice related to ALS, and web-based resources. Each chapter is led by experts from that discipline who review evidence- and experience-based care options. In addition, the entire North American ALS Research Group (ALSRG) has had a chance to weigh in as well, making this a unique and well-rounded resource. The book addresses everything from breaking the news of an ALS diagnosis to end-of-life care and bereavement. By putting experts in conversation with each other, both within and across individual disciplines, Amyotrophic Lateral Sclerosis: A Patient Care Guide for Clinicians provides comprehensive, real-world care information that can't be found anywhere else.
Amyotrophic Lateral Sclerosis Features:
- A practical reference for all members of the ALS care team, covering everything from breaking the news to end-of-life care and bereavement
- Chapters that mirror the organization of large multi-disciplinary ALS clinics and include pertinent information for each member of the care team
- Evidence- and experience-based findings provide current scientific and clinical consensus and a forum for real-world care options
Preface; Contributors; 1. What Is ALS? Carmel Armon, MD, MSc, MHS, FAAN, FANA: Definitions: Motor Neuron System and Motor Neurons, ALS and Frontotemporal Dementia; ALS Lookalikes: Differential Diagnosis; Sporadic, Familial, and Western Pacific ALS: Familial ALS, Western Pacific ALS/PDS; Clinical Phenomenology: Onset and Spread; Pathophysiology at Tissue and Cellular Level; Descriptive Epidemiology of Sporadic ALS/MND; Environmental Risk Factors: Analytic Epidemiology; ALS as one of the System Degeneration Diseases; 2. Neurological Assessment and Medical Management: James A. Russell, DO, Terry Heiman-Patterson, MD, and Carmel Armon, MD: When to Suspect ALS; How to Diagnose ALS; ALS Mimics; Breaking the News; Assessments that are Important for Patient Care; Predicting Progression; Caring for Patients with ALS; Managing Common Symptoms; Pros and Cons of Specific ALS Therapies; Alternative and Off-Label Treatments; Resources Available to ALS Patients and their Families; 3. Nursing Care and Coordination: Dallas Forshew, RN, BSN, and Nicole Yarab, RN, BA: A Lasting Impression: the Day of Diagnosis; Coordination of the Multidisciplinary Clinic; The Nurse as the Glue that Holds it all Together; Preparing for Clinic Day: Essential Patient Evaluations at Every Clinic, Keeping the Day Organized, Communication Between Team Members on Clinic Day, Take-Home Messages for Patients; Post-Clinic Meeting: A Little Bit of Everything: Essentials of Each Discipline That the Nurse Must Know, Social Work, Speech and Swallowing, Patient Education, Special Issues, Resources for Professional Development; Visiting Established ALS Centers: Research Opportunities for Patients, Caring for the Caregiver; 4. Speech and Swallowing Interventions: L.J. Ball, PhD, CCC, K.A. Wright, MCD, CCC-SLP, and S. Lewis, PhC, CCC-SLP: Speech Features of ALS: Motor Speech/Dysarthria, Voice, Speaking Rate and Intelligibility, Communication Effectiveness; Assessments: Dysarthria, Voice, Intelligibility, Communication Effectiveness; Speech Staging; Interventions: Compensatory Strategies, Voice Banking, Timing Referrals for AAC, Patient and Caregiver Education; Swallowing Features of ALS: Oral Phase Swallowing, Pharyngeal Phase Swallowing, Sensory Differences for ALS; Swallowing Assessment: Oral Phase Swallowing, Pharyngeal Phase Swallowing, Time to Consume Meals, MBSS/FEES, Timing Referrals for Percutaneous Endoscopic; Gastrostomy (PEG); Interventions: Exercises, Swallowing Safety, Conserving Energy, Managing Secretions; 5. Nutrition and Nutrition Therapy: Edward J. Kasarskis, MD, PhD, and Margaret T. Hucks, MS, RD, LD: A Well-Balanced Diet; Nutritional Challenges in ALS; Integrated Approach to Nutritional: Management in ALS, Diet Modification and Eating Strategies, Problems with Self Feeding, Chewing and Swallowing Difficulties, Diet Modification to Increase Calories, Hydration, Constipation, Determine if a Patient Is in Positive or Negative Energy, Balance, Recommending Percutaneous Endoscopic Gastrostomy (PEG) as an Alternative Route for Nutritional Intake if EI< TDEE , Risk Stratification for Peg Insertion Based on % FVC; Dietary Supplements; Resources for People with ALS and Caregivers: Cookbooks, Home Delivered Meals/Food, Nutritional Supplements, Chewable Multivitamin Supplements, Acknowledgments;6. Physical Therapy: Ronit Sukenick, DPT, and Fondre Goulbourne, DPT: Evaluation; What Is Physical Therapy's Role in the ALS Disease Process?; Role of Physical Therapy in all Stages of ALS; Rehabilitation in Reverse; Avoiding Secondary Complications; Multiple Disciplines Influence Physical: Therapy Plan of Care; Assistive Devices: Walking Aids, Orthoses; Transfers; Pain; Flexibility; Aerobic and Strength Training; 7. Occupational Therapy: Amber Ward, MS, OTR/L, BCPR, ATP, and Benjamin Rix Brooks, MD: Evaluation; Adaptive Equipment: Eating/Drinking/Cutting, Upper Body Dressing, Lower Body Dressing, Bathing, Toileting, Grooming, Mobile Arm Support, Indoor Leisure Activities, Outdoor Leisure Activities; Splints; Wheelchairs; Wheelchair Accessible Vans and Lifts: Types of Vans, Raised Roof versus Lowered Floor, Rear Entry versus Side Entry, Rear Seat or Passenger Seat, Docking/Tie Downs, Lift versus Ramp, Lifts for the Back of the Vehicle, Ramps; Home Modification: Doors, Ramps, Stair Lift/Elevators, Bathrooms; Driving Modifications; Patient/Family Education; 8. Respiratory Therapy: James B. Caress, MD, and Connie C. Paladenech, RRT, RCP: Natural History; Measurements; Treatments; 9. Assistive Technology: Sara Feldman, PT, MA, DPT, ATP: Evidence-Based AT; AT in the Clinic; Computer Access; iPad; Accessing Ebooks; Environmental Controls; Brain Computer Interface; Summary; 10. Social Work Practice in ALS: Stacey Asnani, MSW, LCSW, and Suzanne Gilroy, MSW: Education; Supportive Counseling: Caregiver Support; Employment Concerns; Disability Programs; Insurance Coverage; Veterans Benefits; Home Health Care and Equipment for Home Use; Unique Populations; Skilled Nursing Facility Placement; Advance Directive Documents; End of Life Care Planning; Palliative and Hospice Care; Advocacy; Treatment Team Support; 11. Psychological Assessment and Support: Susan C. Woolley, PhD, and Jonathan S. Katz, MD: Frontotemporal Dementia, Cognitive Impairment, and Behavioral Impairment: Frontotemporal Lobar Dementia (FTLD), Frontotemporal Dementia in ALS (ALS-FTD), Behavioral Impairment in ALS, Cognitive Impairment in ALS, Prevalence Estimates, Implications of Cognitive and Behavioral Impairment; Differential Diagnosis: Screening, Comprehensive Assessment; Mood Disorders in ALS: Differential Diagnosis; Summary; 12. Ethics and ALS: Katelin Hoskins, RN, MBE, and Leo McCluskey, MD, MBE: Breaking the News; Decision Making; Genetics; Research Participation; Communication; Feeding Tube; Long-Term Mechanical Ventilation; Hospice Care; Physician-Assisted Suicide and Euthanasia; 13. End-of-Life Care: Jerome Kurent, MD MPH, and Meraida Polak, RN: Management of Physical Symptoms: Dyspnea, Terminal Anxiety and Delirium, Dysphagia, Pseudobulbar Palsy and Emotional Lability, Muscle Cramps, Depression, Sialorrhea, Pain, Constipation; The Final Stages of Life for the Patient with ALS: Vital Role of the ALS Patient Family Caregivers and Caregiver Toll, Role of Hospice; 14. Web-Based Resources: Paul Wicks, PhD, and Jamie Heywood: Information Preferences in ALS; Advice for Patients Using the Internet; Online Resources for People with ALS: Static Information, Dynamic Information, Interactive Resources, Improving Your Own ALS Center's Website; Index
About the Editors
Richard Bedlack, MD
Associate Professor of Neurology, Duke University Medical School and Director, Duke MDA/ALS Clinic
Hiroshi Mitsumoto, MD
Wesley J. Howe Professor of Neurology, Columbia University Medical Center and Director, Eleanor and Lou Gehrig MDA/ALS Research Center and Neuromuscular Division, Neurological Institute of New York