Presentation 212 d gardner_the pyramid of care for als
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The ALS Association 2014 Clinical Conference Phoenix, AZ
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Presentation 212 d gardner_the pyramid of care for als
- 1. The Pyramid of Care for ALS Patients to Decrease Their Work of Breathing De De Gardner MSHP RRT-NPS FAARC Chair – Department of Respiratory Care Stephen Lloyd Barshop Endowed Professor University of Texas Health Science Center at San Antonio
- 2. ALS and Airway Clearance (ALSAC) Is There a Best Therapy for Airway Clearance in Patients with ALS?
- 3. Disclosures ALS Association and Will Rogers Institute Grant : ALS and Airway Clearance (ALSAC) Is There a Best Therapy for Airway Clearance in Patients with ALS? Environmental Protection Agency (EPA): Faculty as agents of IAQ Change Grant University of Texas System Grant: WIPE ASTHMA University of Texas Health Science Center for Ethics and Humanities Grants
- 4. OBJECTIVES Describe causes of increased work of breathing. Evaluate a patient with ALS using the pyramid of care™ to address increased work of breathing. Describe the role of the airway clearance therapies for managing patient with ALS. Compare and contrast therapies used to manage increased work of breathing in patients with ALS.
- 6. Increase Work of Breathing Inspiratory muscles weaken Diaphragm weakens = Hypoventilation Expiratory muscles weaken = Poor cough effort Bulbar muscles weaken = Dysphagia and dysarthria Oppenheimer, EA, Guth, D, Fischer, J. Treating Respiratory Problems in ALS patients can improve quality of life.
- 7. ALS Functional Rating Scale – Revised (ALSFRS) Scale of QOL Disease progression Assess the respiratory component of the disease Dyspnea Orthopnea Secretion issues Compliance with NIPPV http://www.oxfordmnd.net/information/ALSFRS-R. pdf
- 8. Evaluate Work of Breathing Vital Capacity Peak Expiratory Cough Flow Maximum Inspiratory Pressure (MIP) OR Sniff Nasal Inspiratory Pressure (SNIP) Maximum Expiratory Pressure (MEP) MIP/MEP Standing/sitting AND supine
- 9. Evaluate Work of Breathing Vital Capacity Peak Expiratory Cough Flow Maximum Inspiratory Pressure (MIP) OR Sniff Nasal Inspiratory Pressure (SNIP) Maximum Expiratory Pressure (MEP) MIP/MEP Standing/sitting AND supine
- 10. Respiratory Issues Gradual deterioration of corticobulbar area of the brainstem Facial, head and neck muscles Weakening of diaphragm and intercostal muscles Breathing consumes energy & Increased fatigue Increased Sialorrhea & Thick/sticky mucus Ineffective cough Inability to mobilize secretions Aspiration
- 11. Invasive Ventilation Airway & Secretion Management EARLY initiation of Non Invasive Ventilation Adjuncts for increased work of breathing Work of breathing
- 12. Meet the patient where there are
- 13. Patient Awareness Morning Headache Confusion or foggy mind Frequent yawning or sighing Daytime sleepiness Difficulty sleeping Shortness of Breath (SOB) with activity Dyspnea Power of voice decreases or sense a weak voice
- 14. Invasive Ventilation Airway & Secretion Management EARLY initiation of Non Invasive Ventilation Adjuncts for increased work of breathing Work of breathing
- 15. First Steps for First Signs/Symptoms Increase head of bed by 45o Use foam wedge as a pillow Incentive Spirometry Breath Stacking Conserve energy Breathing control Pursed lip breathing Use NIPPV if ordered Morning Headache Confusion or foggy mind Frequent yawning or sighing Daytime sleepiness Difficulty sleeping Shortness of Breath (SOB) with activity Dyspnea Weaker voice
- 16. Invasive Ventilation Airway & Secretion Management EARLY initiation of Non Invasive Ventilation Adjuncts for increased work of breathing Work of breathing
- 17. Patient Awareness Previous signs/symptoms Spouse complains of snoring or apnea Claustrophobia Difficulty speaking Vivid Colorful or nightmare type dreams Not able to lie flat in bed All signs association with nocturnal hypoventilation
- 18. Evaluate Respiratory Function Medicare criteria for NIPPV FVC less than 50% (less than 80%) MIP less than -60 cm H2O SNIP less than -40 cm H2O Nocturnal oximetry is less than 88% for 5 minutes National Institute for Health and Clinical Excellence, Centre for Clinical Practice. The motor neuron disease: the use of non-invasive ventilation in the management of motor neuron, disease. London; July 2010:CG 105.
- 19. Non Invasive Positive Pressure Ventilation Acronyms & Synonyms NIV NIPPV Bi-PAP Decreases the work of breathing Increases depth of breathing Increases mucous mobility
- 20. NIPPV Begin with IPAP (12 cm H2O) and EPAP (5 cm H2O) Depending on patient and interface Start with short time frames Wear it during the day Work up to all night Start immediately at night and all night Only daytime Only night time 24 hours a day x 7 days a week Need to provide patient 2 interfaces Decrease chance of skin break down Alsa.org
- 23. Early NIPPV Optimal timing is difficult Symptomatic Early intervention Prolong survival time ~ 1 week – 6 months Reduces the decline of Vital Capacity Better compliance Cost effective Miller RG, Jackson CE. Practice Parameter Update: Neurology. 2009 Chio A, Logroscino G and et. Al Prognostic Factors in ALS: A Critical Review. 2009. 10; 5-6: 310-323 Gruis KL, Chernew ME, Brown DL. The cost effectiveness of early noninvasive ventilation for ALS patients. BMC Health Services Research. 2005; 5:58.
- 24. Evaluate Respiratory Function Medicare criteria for NIPPV FVC less than 50% MIP less than 60 cm H2O SNIP less than 40 cm H20 Nocturnal oximetry is less than 88% for 5 minutes National Institute for Health and Clinical Excellence, Centre for Clinical Practice. The motor neuron disease: the use of non-invasive ventilation in the management of motor neuron, disease. London; July 2010:CG 105.
- 25. BREATHING, SNIFFING, & COUGHING
- 26. Invasive Ventilation Airway & Secretion Managemen t EARLY initiation of Non Invasive Ventilation Adjuncts for increased work of breathing Work of breathing
- 27. Patient Awareness Difficult to clear airways Sense of smell decreases Power behind the cough is gone Inability to sniff or blow nose “Just cant get enough air in”
- 31. Inflammation Mucus production Mucus plugging Infection Mucus retention Increased work of breathing Shortness of breath Decreased ability to cough
- 32. Secretion Management Reduce salivary gland issues Mucolytics Increase hydration Oral Guaifenesin (Mucinex, Robitussin) Anticholinergics Suction devices Mechanical Insufflator Exsufflator (MIE) High Frequency Chest Wall Oscillation (HFCWO) Biphasic Curiass
- 33. Fan Therapy Box fan Blowing on low, medium or high Towards the face Decrease perception of increased WOB Stimulates receptors in the trigeminal nerve in the cheek and nasopharynx
- 34. Patient Awareness Increase saliva production Choke on saliva Drooling Keep tissues at hand Swallowing difficulty Spasms in the airway (laryngospasm) Notice change in consistency in saliva
- 35. Sialorrhea Management Anticholinergic Agents (Amitriptyline) Glycopyrolate (Robinul) Hyocyamine (Levsin) Atropine (Saltropine) Clonazepam (Klonopin) Transderm – scopolamine Botox Parotid or submandibular gland radiation therapy Increase fluid intake Oral suction device
- 36. PATIENT AWARENESS Coughing /choking when eating OR drinking Change food content or consistency Increase time to eat more than 30 -45 minutes Tired when eating Losing weight or not able to maintain weight Dehydrated VC drops by 20% or is at 50%
- 37. Percutaneous Endoscopic Gastrostomy (PEG) tube Allows control over feeding Less tired Avoids large meals that increase abdominal pressure Allows small meals Maintain hydration Decrease risk for aspiration Maintain weight Reserve energy
- 38. Invasive Ventilation Airway & Secretion Management EARLY initiation of Non Invasive Ventilation Adjuncts for increased work of breathing Work of breathing
- 39. PATIENT AWARENESS Increased SOB with NIPPV MIE/HFCWO demonstrates some relief Resources in place to do so Personal choice
- 40. Invasive Mechanical Ventilation End stage ALS NIPPV not as effective Resources available Elective tracheostomy Passy-Muir Valve Long Term Invasive Mechanical Ventilation
- 41. Palliative Care Invasive Ventilation Airway & Secretion Management EARLY initiation of Non Invasive Ventilation Adjuncts for increased work of breathing Work of breathing
- 42. PALLIATIVE CARE Patient does not opt for invasive ventilation Hospice VC less than 30% NIPPV Morphine Acts on nerves Decrease response to hypoxia and hypercapnia Alters perception of breathlessness
- 43. AAN Practice Parameter Update Riluzole should be offered to slow disease progression PEG considered to stabilize weight and prolong survival NIPPV considered to treat respiratory insufficiency to lengthen survival consider to slow the decline in FVC improve QOL Early NIPPV may increase compliance MIE may be considered to help clear secretions HFCWO is considered as well Miller RG, Jackson CE. Practice Parameter Update: Neurology. 2009
- 44. ALS AIRWAY CLEARANCE (ALSAC) STUDY
- 45. Investigators De De Gardner, MSHP, RRT, FAARC Carlayne Jackson, MD Carolyn Walden Pam Kittrel, RN
- 46. ALSAC STUDY ALS patients develop progressive expiratory respiratory muscle weakness which leads to an ineffective cough. The airway clearance devices are the Mechanical Insufflation/Exsufflation (MIE) otherwise known as the CoughAssist™ and the High Frequency Chest Wall Oscillation device (HFCWO) otherwise known to ALS patients as “the Vest” The broad objectives of our program are to evaluate the combined use of the MIE and HFCWO to provide full respiratory airway clearance and cough assistance among ALS patients.
- 47. The Specific Aims of the Proposed Pilot Project are: To evaluate the effectiveness of the MIE and HFCWO used in combination compared to each used alone To compare compliance, tolerability and quality of life among the three groups.
- 48. Primary Hypothesis MIE and HFCWO in combination will be more effective than MIE or HFCWO alone. Determined by evaluating the Respiratory Complications Severity Scale Capture events that would indicate the severity of such complications from best (no complications) to worst (death due to respiratory complications).
- 49. Inclusion Criteria: Adults diagnosed with ALS AND their caregivers Age 21 or above Peak cough flow less than 160 Liters per minute Complaints of problems clearing airway secretions
- 50. Exclusion Criteria include: Current use of SmartVest or CoughAssist Tracheostomy Congestive heart failure All contraindications for the SmartVest Head and/or neck injury that has not been stabilized; Active hemorrhage with hemodynamic instability; Uncontrolled hypertension; Active or recent gross hemoptysis; and All contraindications for the Cough Assist History of bullous emphysema Known susceptibility to pneumothorax Pneumomediastinum Recent barotrauma
- 51. Participant Commitments Participants randomized to 1 of 3 groups Participant and caregiver attend 3 clinic visits 3 months apart Daily use of devices as prescribed Record use of the device and secretion amount daily Home care respiratory therapist visit monthly between clinic visits Participant and caregiver complete questionnaires
- 52. Visual Analog Patient’s/Caregiver’s Perception of patient’s ability to move secretions Scale Poor ability to move airway secretions Excellent ability to move airway secretions Patient’s/Caregiver’s Perception of patient’s ability to move secretions Scale No Problem Serious Problem
- 53. Global Impression of Change Patient and Caregiver Since you have been in the study, do you feel secretion removal is: Markedly worse Slightly worse Not any different Slightly better Markedly better
- 54. Visit One/Two/Three for the Patient and Caregiver Patient Pulmonary Function Testing Physical Exam ALSFRS – R Survey Online Impression of Change Caregiver Patient Caregiver Form Impression of Change
- 55. Descriptive Results N=28 (16 Males, 12 Females) Diagnosed with ALS Between the ages of 36 - 75 10 completed study 2 are active 13 have dropped 3 are deceased
- 56. Group 1 - MIE n= 9 (5 males, 4 females) 5 dropped, 3 completed, 1 deceased Group 2 MIE +HFCWO n= 10 (7 males, 3 females) 4 dropped, 4 completed, 1 active, 1 deceased Group 3 - HFCWO n= 9 (4 males, 5 females) 4 dropped, 3 completed, 1 active, 1 deceased
- 57. Discussion Difficult to conduct research with ALS patients and caregivers Complexities of the disease Psychosocial confounders Guidelines and Practice parameters demonstrate using the devices early to have a positive effect Patients may not be psychological ready Patients who presented to the clinic were further along in the disease process It is unclear the patient and family were slow to seek care or that PCP are not familiar with the signs of symptoms of ALS. Insurance companies can be a barrier to covering cost of equipment Copays are a difficult issue for patients.
- 58. Conclusion Increased work of breathing is scary Involves respiratory weakness that leads to respiratory failure Respiratory parameters determine respiratory insufficiency Initiate PEG early on as well Initiate NIPPV early and more aggressive airway clearance therapies
- 60. Respiratory Therapist Make a Difference De De Gardner, MSHP, RRT-NPS, FAARC 210-567-7960 GardnerD@uthscsa.edu
- 61. ALS Association Certified Center of Excellence Medical Arts & Research Center 8300 Floyd Curl Drive, 4th Floor, MC 7883 San Antonio, TX 78229 Medical Director - Carlayne E. Jackson, M.D. Phone: 210-450-9700 Fax: 210-450-6041