Managing Symptoms and Improving Function - PowerPoint PPT Presentation

Susan S. Jacobs RN, MS

Pulmonary and Critical Care Medicine

Center for Interstitial Lung Disease

Stanford University Medical Center

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.

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

“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

Written Questionnaire

SCORE

↓

SOMETHING

CONCRETE

Medications

Oxygen

IPF exacerbations

Drug research

Lung transplant

Quality

Physical

Social

Emotional

Spiritual

• 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

• 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

• Learn strategies to manage symptoms of shortness of breath and cough
• Keep moving: options for exercise

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

• 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

• 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

• Try lozenges, honey & lemon, hot water...
• Avoid irritants, triggers
• ↑ oxygen during coughing as needed
• It is difficult to treat

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

• 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

• 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

• 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.

• 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.

Pre Post Chg p

6MW, ft1060 (400) 1195 (339) 135 <0.0005

Max BORG3.5 (2.3) 2.5 (1.5) 1.0 <0.03

• 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.

• 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.

Ferreira A., Garvey C., Connors, G., Hilling L., Rigler, J., Farrell S., Cayo C.,

Shariat, C., and Collard, H. Chest ,Oct. 10, 2008.

• 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

Interrupt

Shortness of Breath

Anxiety

Anxiety

Shortness

of Breath

Shortness

of Breath

Decreased Activity

• 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

• 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

• 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

Fan/cold air

Relaxation

Distraction

Yoga

Oxygen

Opiates

• 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

Motivation!

Inspiration!