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Managing Symptoms and Improving Function in Pulmonary Fibrosis

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Managing Symptoms and Improving Function in Pulmonary Fibrosis Managing Symptoms and Improving Function in Pulmonary Fibrosis Presentation Transcript

  • Managing Symptoms and Improving Function
    • Susan S. Jacobs RN, MS
    • Pulmonary and Critical Care Medicine
    • Center for Interstitial Lung Disease
    • Stanford University Medical Center
  • Quality vs Quantity
    • While we continue our efforts to improve your quantity of life, we want to ensure that together we do everything possible to improve the quality of your life .
  • Goal of Talk:
    • To describe strategies that can improve your quality of life by:
    • 1. managing symptoms (cough and shortness of breath)
    • 2. keeping as physically active as possible
  • What is QOL?
    • “ An individual’s perception of contentment or satisfaction with life”
    ATS Quality of Life Resource, www.atsqol.org
  • How Do We Measure QOL? QOL ↓ SOMETHING ABSTRACT SCORE ↓ SOMETHING CONCRETE Written Questionnaire
  • Treatment should focus on both quantity and quality!
    • Quantity
      • Medications
      • Oxygen
      • IPF exacerbations
      • Drug research
      • Lung transplant
    • Quality
      • Physical
      • Social
      • Emotional
      • Spiritual
  • “ How does IPF affect your life?” (results of interviews with 20 IPF pts.)
    • Symptoms: Cough, shortness of breath
    • IPF therapy: Oxygen, side effects of meds
    • Sleep: disturbed sleep
    • Exhaustion: lack of energy, fatigue
    • Forethought: need to always plan ahead
    • Employment: finances, work, security
    Swigris et al. Health Qual Life Outcomes 2005
  • “ How does IPF affect your life?” cont’d
    • Dependence: need to rely on others
    • Family: impact on family relationships
    • Sexual Relations: limitations on activity
    • Socialization/Leisure: social isolation
    • Mental and Spiritual: fear, worry
    • Mortality: feelings about death
    Swigris et al. Health Qual Life Outcomes 2005
  • Managing Symptoms and Improving Function
    • Learn strategies to manage symptoms of shortness of breath and cough
    • Keep moving: options for exercise
  • “ If I could just get rid of the cough…”
    • Effect on family
    • Embarrassment
    • Sick to stomach
    • Retching
    • Incontinence
    • Headache
    • Ache all over
    • Breathlessness
    • Hurts to breathe
    • Exhausted
    • Unable to do activities
    • Dizziness
    • Rib fractures
    • Sleep interruption
    • Can’t phone, talk, sing, laugh
    • Decreased socialization
    • Change in lifestyle
    Adapted from: French TF et al. Chest, 2002;121, French TF et al. Chest 2004;125
  • What Causes the Cough in ILD?
    • The pulling or stretching of fibrotic lung tissue stimulates release of substances in the lung that trigger cough
    • The cough receptors in airways of ILD pts. are ‘up-regulated’ compared to normal airways, i.e. more sensitive
    • We really don’t know for sure
  • How to Manage the Cough
    • Aggressively treat and prevent GERD
    • Eliminate post nasal drip
    • Try medications to suppress cough:
      • Inhaled Steroids (Advair, QVar)
      • Guaifenesin (Mucinex, )
      • Benzonatate (Tessalon Perles)
      • Oral Steroids (Prednisone)
      • Nebulized anesthetics (Lidocaine)
      • Opiates (Codeine, Morphine)
      • Experimental: baclofen, neurontin, thalidomide
  • More on Managing Cough
    • Try lozenges, honey & lemon, hot water...
    • Avoid irritants, triggers
    • ↑ oxygen during coughing as needed
    • It is difficult to treat
  • Get Moving: Benefits of Exercise
    • Builds endurance
    • Strengthens muscles
    • “ Desensitizes” you to SOB
    • Improves mood
    • Allows you to maintain an independent life, to travel, and to socialize
    • Maintains ideal weight
    • Decreases anxiety
  • Pulmonary Rehabilitation (PR): What is It????
    • 4-6 wk. program, 2-3 hr. sessions of exercise and education, 2-3 x week
    • Education : Nutrition, medication and oxygen use, lung function, travel, breathing retraining, relaxation and panic control training, prevention of infection, plus SOCIAL SUPPORT…
    • Exercise : Individualized exercise sessions including stretching, aerobics, and strengthening
  • PR in Pulmonary Fibrosis Patients: What Are the Benefits?
    • Previously, benefits of PR were only studied and documented in patients with COPD (emphysema and chronic bronchitis)
    • Recently there is increased interest and research data supporting equal benefit of PR for patients with ILD
  • “ Effectiveness of PR in Restrictive Lung Disease (RLD)”
    • 26 pts. with RLD completed 8 wk. PR
    • PFTs, 6MW, QOL at baseline, 8 wks, & 1 yr.
    • Shuttle Walk Test increased by 61 meters
    • Treadmill time increased from 12 to 21 min.
    • Improvements in breathlessness, QOL, anxiety and depression scores post PR
    • Reduced hospital admissions post PR
    Naji, N. et al. JCR.26(4):237, July/August 2006 .
  • “ Effects of PR in patients with idiopathic pulmonary fibrosis”
    • 30 pts. with IPF were randomly assigned to usual care or a 10 week pulm. rehab program
    • Breathing tests, 6 min. walk test, QOL, and breathlessness scores were measured before and after the program in both groups
    • RESULTS:
      • No change in breathing tests before and after PR
      • Increased 6MW distance of 46 meters in PR group
      • Improved QOL scores in PR group
    Nishiyama,O et al. Respirology , 2008 . V13, 394-399.
  • “ Effects of PR in patients with idiopathic pulmonary fibrosis” Nishiyama,O et al. Respirology , 2008 . V13, 394-399 . No difference +0.03 2.1 (0.4) 2.0 (0.8) Breathing test FVC (forced Vital Capacity) No difference +0.4 6.7 (1.3) 8.0 (2.2) BDI breathlessness +46.3 -6.1 Difference Between Groups <0.01 <0.05 P 427 (84) 472 (130) 6MW, meters 47.3 40.9 SGRQ QOL Rehab Group Control Group Variable
  • “ PR Outcomes for Patients Referred from an Interstitial Lung Disease Clinic”
    • 152 pts. from Stanford’s ILD clinic were referred to 19 different California PR programs between 4/02-1/08
    • About 1/3 (32%) completed PR
    • Reasons for not completing PR included being too sick, financial reasons, already exercising, distance/transportation and other
    Jacobs, S., Hunter,T., Mohabir, P., Rosen., G., Abstract ;American Thoracic Society Mtg, 2007 .
  • Diagnosis of Patients Referred to PR from Stanford ILD Center
  • “ PR Outcomes for Patients Referred from an Interstitial Lung Disease Clinic” (32 patients’ exercise results)
    • Pre Post Chg p
    • 6MW, ft 1060 (400) 1195 (339) 135 <0.0005
    • Max BORG 3.5 (2.3) 2.5 (1.5) 1.0 <0.03
  • “ PR Outcomes for Patients Referred from an Interstitial Lung Disease Clinic”
    • Summary:
      • 6 minute walk distance and total aerobic exercise time significantly increased pre to post PR
      • Dyspnea measured immediately post-exercise using the modified Borg (0-10 scale ) significantly decreased pre to post PR
      • 24hr. oxygen-dependent ILD pts. experienced similar gains in 6MW distance pre to post rehab compared to non-oxygen dependent ILD pts.
    Jacobs, S., Hunter,T., Mohabir, P., Rosen., G., Abstract ATS, 2007 .
  • “ Pulmonary Rehabilitation in ILD: Benefits and Predictors of Response”
    • Records reviewed for ILD patients from 3 different PR centers with similar programs, all certified by American Association of Cardiovascular and Pulmonary Rehabilitation
    • PFTs, oxygen therapy, smoking history information included
    • Pre and post scores for breathlessness, depression, 6 minute walk tests (6MWT) analyzed
    Ferreira A., Garvey C., Connors, G., Hilling L., Rigler, J., Farrell S., Cayo C., Shariat, C., and Collard, H. Chest , Oct. 10, 2008 .
  • “ Pulmonary Rehabilitation in ILD: Benefits and Predictors of Response” Ferreira A., Garvey C., Connors, G., Hilling L., Rigler, J., Farrell S., Cayo C., Shariat, C., and Collard, H. Chest , Oct. 10, 2008. 0.046 -2.2 (8) 13.6 (8) 15.7 (8) CES-D (depression) (n=27) <0.0001 -1.0 (1.7) 2.7 (1.7) 3.6 (2.0) Borg SOB (n=99) +56 (69) -8.3 (14) Change <0.0001 0.005 P 391 (118) 335 (131) 6MW, meters (n=99) 49.1 (25) 57.4 (25) UCSD SOB (n=29) Post Pre Variable
  • Exercise Alternatives to PR
    • Mall walkers
    • Home exercise equipment
    • Go out your front door
    • Videos
    • ‘Sit and Be Fit’ or other TV shows
    • Buy a dog
    • Water aerobics/swimming
  • Exercise Stops the Downward Spiral of Dyspnea - Anxiety - Decreased Activity Shortness of Breath Anxiety Decreased Activity Shortness of Breath Anxiety Shortness of Breath Interrupt
  • Oxygen and Exercise
    • Oxygen prescription (liter flow) is assessed by checking your oxygen saturation by pulse oximetry (probe on your finger):
      • 1. At rest
      • 2. During activity (showering, walking,…)
      • 3. During sleep
    • Initially, oxygen levels may only drop below 88% with activity but be OK at rest.
    • Goal is to keep oxygen saturation >90%; insurers require levels <88% for coverage
  • More on Oxygen
    • The need for oxygen is determined by checking your oxygen saturations, not by your degree of breathlessness
    • It is important to have your oxygen saturations checked regularly both at rest and with activity as your needs may change
    • Pulse or ‘demand’ systems are different than continuous flow systems, so your oxygen sats should be checked on the system you are actually using
  • Summary of Exercise Findings
    • Regular, planned exercise can improve endurance, shortness of breath, and quality of life
    • Deconditioning can be more limiting than breathing test results
    • Exercise benefits are also a result of desensitization to SOB as well as motivation
    • Adequate oxygenation during exercise remains a challenge for many patients
  • Managing Shortness of Breath
      • Exercise
      • Fan/cold air
      • Relaxation
      • Distraction
      • Yoga
      • Oxygen
      • Opiates
  • Managing Symptoms and Improving Function: Summary
    • Enroll in Pulmonary Rehab and continue to exercise after you finish
    • Use multiple strategies to help your SOB and cough
    • Learn as much as you can about pulmonary fibrosis, your medications, and oxygen Rx
    • Connect with others for support and meaningful emotional and social interactions
  • Inspiration! Motivation!
  • Thank You!