Managing Symptoms and
Improving Function
Susan S. Jacobs RN, MS
Pulmonary and Critical Care Medicine
Center for Interstiti...
Quality vs Quantity
While we continue our efforts to
improve your quantity of life, we
want to ensure that together we do
...
Goal of Talk:
To describe strategies that can improve
your quality of life by:
1. managing symptoms (cough and
shortness o...
What is QOL?
“An individual’s perception of
contentment or satisfaction with life”
ATS Quality of Life Resource, www.atsqo...
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
...
“How does IPF affect your life?”
(results of interviews with 20 IPF pts.)
Symptoms: Cough, shortness of breath
IPF thera...
“How does IPF affect your life?”
cont’d
Dependence: need to rely on others
Family: impact on family relationships
Sexua...
Managing Symptoms and
Improving Function
Learn strategies to manage symptoms
of shortness of breath and cough
Keep movin...
“If I could just get rid
of the cough…”
 Effect on family
 Embarrassment
 Sick to stomach
 Retching
 Incontinence
 H...
What Causes the Cough in ILD?
The pulling or stretching of fibrotic lung
tissue stimulates release of substances
in the l...
How to Manage the Cough
Aggressively treat and prevent GERD
Eliminate post nasal drip
Try medications to suppress cough...
More on Managing Cough
Try lozenges, honey & lemon, hot water...
Avoid irritants, triggers
 ↑ oxygen during coughing as...
Get Moving: Benefits of Exercise
Builds endurance
Strengthens muscles
“Desensitizes” you to SOB
Improves mood
Allows ...
Pulmonary Rehabilitation (PR):
What is It????
4-6 wk. program, 2-3 hr. sessions of exercise
and education, 2-3 x week
Ed...
PR in Pulmonary Fibrosis
Patients: What Are the Benefits?
Previously, benefits of PR were only
studied and documented in ...
“Effectiveness of PR in
Restrictive Lung Disease (RLD)”
26 pts. with RLD completed 8 wk. PR
PFTs, 6MW, QOL at baseline, ...
“Effects of PR in patients with
idiopathic pulmonary fibrosis”
30 pts. with IPF were randomly assigned to usual care or a...
“Effects of PR in patients with
idiopathic pulmonary fibrosis”
Variable Control
Group
Rehab
Group
Difference
Between
Group...
“PR Outcomes for Patients Referred from
an Interstitial Lung Disease Clinic”
152 pts. from Stanford’s ILD clinic were
ref...
Diagnosis of Patients Referred to PR
from Stanford ILD Center
COP Hypersensitivity
Pneumonitis
ILD non classifiable
ILD RA...
“PR Outcomes for Patients Referred from
an Interstitial Lung Disease Clinic”
(32 patients’ exercise results)
Pre Post Chg ...
“PR Outcomes for Patients Referred from
an Interstitial Lung Disease Clinic”
Summary:
– 6 minute walk distance and total ...
“Pulmonary Rehabilitation in ILD:
Benefits and Predictors of Response”
Records reviewed for ILD patients from 3
different...
“Pulmonary Rehabilitation in ILD:
Benefits and Predictors of Response”
Variable Pre Post Change P
Borg SOB
(n=99)
3.6 (2.0...
Exercise Alternatives to PR
Mall walkers
Home exercise equipment
Go out your front door
Videos
‘Sit and Be Fit’ or ot...
Exercise Stops the Downward Spiral of
Dyspnea - Anxiety - Decreased Activity
Shortness of Breath
Anxiety
Decreased Activit...
Oxygen and Exercise
 Oxygen prescription (liter flow) is assessed by
checking your oxygen saturation by pulse oximetry
(p...
More on Oxygen
 The need for oxygen is determined by checking your
oxygen saturations, not by your degree of
breathlessne...
Summary of Exercise Findings
 Regular, planned exercise can improve endurance,
shortness of breath, and quality of life
...
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
Us...
Inspiration!
Motivation!
Thank You!
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Managing Symptoms and Improving Function in Pulmonary Fibrosis

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Managing Symptoms and Improving Function in Pulmonary Fibrosis

  1. 1. Managing Symptoms and Improving Function Susan S. Jacobs RN, MS Pulmonary and Critical Care Medicine Center for Interstitial Lung Disease Stanford University Medical Center
  2. 2. 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.
  3. 3. 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
  4. 4. What is QOL? “An individual’s perception of contentment or satisfaction with life” ATS Quality of Life Resource, www.atsqol.org
  5. 5. How Do We Measure QOL? QOL ↓ SOMETHING ABSTRACT SCORE ↓ SOMETHING CONCRETE Written Questionnaire
  6. 6. Treatment should focus on both quantity and quality! Quantity – Medications – Oxygen – IPF exacerbations – Drug research – Lung transplant Quality – Physical – Social – Emotional – Spiritual
  7. 7. “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
  8. 8. “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
  9. 9. Managing Symptoms and Improving Function Learn strategies to manage symptoms of shortness of breath and cough Keep moving: options for exercise
  10. 10. “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
  11. 11. 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
  12. 12. 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
  13. 13. More on Managing Cough Try lozenges, honey & lemon, hot water... Avoid irritants, triggers  ↑ oxygen during coughing as needed It is difficult to treat
  14. 14. 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
  15. 15. 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
  16. 16. 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
  17. 17. “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.
  18. 18. “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.
  19. 19. “Effects of PR in patients with idiopathic pulmonary fibrosis” Variable Control Group Rehab Group Difference Between Groups P BDI breathlessness 8.0 (2.2) 6.7 (1.3) +0.4 No difference SGRQ QOL 40.9 47.3 -6.1 <0.05 6MW, meters 472 (130) 427 (84) +46.3 <0.01 Breathing test FVC (forced Vital Capacity) 2.0 (0.8) 2.1 (0.4) +0.03 No difference Nishiyama,O et al. Respirology , 2008 . V13, 394-399.
  20. 20. “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.
  21. 21. Diagnosis of Patients Referred to PR from Stanford ILD Center COP Hypersensitivity Pneumonitis ILD non classifiable ILD RA-Related Scleroderma IPF Biopsy Proven MCTD NSIP Sarcoidosis Other IPF Clinical AIP
  22. 22. “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
  23. 23. “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.
  24. 24. “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.
  25. 25. “Pulmonary Rehabilitation in ILD: Benefits and Predictors of Response” Variable Pre Post Change P Borg SOB (n=99) 3.6 (2.0) 2.7 (1.7) -1.0 (1.7) <0.0001 UCSD SOB (n=29) 57.4 (25) 49.1 (25) -8.3 (14) 0.005 6MW, meters (n=99) 335 (131) 391 (118) +56 (69) <0.0001 CES-D (depression) (n=27) 15.7 (8) 13.6 (8) -2.2 (8) 0.046 Ferreira A., Garvey C., Connors, G., Hilling L., Rigler, J., Farrell S., Cayo C., Shariat, C., and Collard, H. Chest , Oct. 10, 2008.
  26. 26. 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
  27. 27. Exercise Stops the Downward Spiral of Dyspnea - Anxiety - Decreased Activity Shortness of Breath Anxiety Decreased Activity Shortness of Breath Anxiety Shortness of Breath Interrupt
  28. 28. 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
  29. 29. 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
  30. 30. 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
  31. 31. Managing Shortness of Breath – Exercise – Fan/cold air – Relaxation – Distraction – Yoga – Oxygen – Opiates
  32. 32. 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
  33. 33. Inspiration! Motivation!
  34. 34. Thank You!

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