Managing symptoms and improving function
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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.

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Managing symptoms and improving function

Managing Symptoms andImproving Function

Susan S. Jacobs RN, MS

Pulmonary and Critical Care Medicine

Center for Interstitial Lung Disease

Stanford University Medical Center


Quality vs quantity

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

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

What is QOL?

“An individual’s perception of contentment or satisfaction with life”

ATS Quality of Life Resource, www.atsqol.org


Managing symptoms and improving function

How Do We Measure QOL?

QOL

SOMETHING

ABSTRACT

Written Questionnaire

SCORE

SOMETHING

CONCRETE


Treatment should focus on both quantity and quality

Quantity

Medications

Oxygen

IPF exacerbations

Drug research

Lung transplant

Quality

Physical

Social

Emotional

Spiritual

Treatment should focus on both quantity and quality!


How does ipf affect your life results of interviews with 20 ipf pts

“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

“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 function1

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

“If I could just get rid of the cough…”

Adapted from:

French TF et al. Chest, 2002;121, French TF et al. Chest 2004;125


What causes the cough in ild

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

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

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

Get Moving: Benefits of Exercise


Pulmonary rehabilitation pr what is it

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

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

“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.


Managing symptoms and improving function

“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.


Managing symptoms and improving function

“Effects of PR in patients with idiopathic pulmonary fibrosis”

Nishiyama,O et al. Respirology , 2008 . V13, 394-399.


Pr outcomes for patients referred from an interstitial lung disease clinic

“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

Diagnosis of Patients Referred to PRfrom Stanford ILD Center


Managing symptoms and improving function

“PR Outcomes for Patients Referred from an Interstitial Lung Disease Clinic”(32 patients’ exercise results)

PrePostChgp

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

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


Pr outcomes for patients referred from an interstitial lung disease clinic1

“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

“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 response1

“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.


Exercise alternatives to pr

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

ExerciseStops the Downward Spiral of Dyspnea - Anxiety - Decreased Activity

Interrupt

Shortness of Breath

Anxiety

Anxiety

Shortness

of Breath

Shortness

of Breath

Decreased Activity


Oxygen and exercise

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

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

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 Shortness of Breath


Managing symptoms and improving function summary

Managing Symptoms andImproving 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


Managing symptoms and improving function

Motivation!

Inspiration!


Thank you

Thank You!


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