Managing Symptoms andImproving Function

Susan S. Jacobs RN, MSPulmonary and Critical Care Medicine

Center for Interstitial Lung DiseaseStanford 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

↓

SOMETHINGABSTRACT

SCORE

↓

SOMETHINGCONCRETE

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 breathIPF therapy: Oxygen, side effects of medsSleep: disturbed sleepExhaustion: lack of energy, fatigueForethought: need to always plan aheadEmployment: finances, work, security

Swigris et al. Health Qual Life Outcomes 2005

“How does IPF affect your life?” cont’d

Dependence: need to rely on othersFamily: impact on family relationshipsSexual Relations: limitations on activitySocialization/Leisure: social isolationMental 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 GERDEliminate post nasal dripTry 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 enduranceStrengthens muscles“Desensitizes” you to SOBImproves moodAllows you to maintain an

independent life, to travel, and to socialize

Maintains ideal weightDecreases 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. PRPFTs, 6MW, QOL at baseline, 8 wks, & 1 yr.Shuttle Walk Test increased by 61 metersTreadmill time increased from 12 to 21 min. Improvements in breathlessness, QOL, anxiety

and depression scores post PRReduced 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”

Variable Control

Group

Rehab

Group

DifferenceBetween 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 testFVC (forced Vital Capacity)

2.0 (0.8) 2.1 (0.4) +0.03 No difference

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

“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 CenterCOP Hypersensitivity

Pneumonitis

ILD non classifiable

ILD RA-Related

Scleroderma

IPF Biopsy Proven

MCTD

NSIP

SarcoidosisOther

IPF Clinical

AIP

“PR Outcomes for Patients Referred from an Interstitial Lung Disease

Clinic”(32 patients’ exercise results)

Pre Post Chg p6MW, 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”

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.

Exercise Alternatives to PR

Mall walkersHome exercise equipmentGo out your front doorVideos‘Sit and Be Fit’ or other TV showsBuy a dogWater 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 andImproving Function:

SummaryEnroll in Pulmonary Rehab and continue to

exercise after you finishUse multiple strategies to help your SOB and

coughLearn as much as you can about pulmonary

fibrosis, your medications, and oxygen RxConnect with others for support and

meaningful emotional and social interactions

Inspiration!

Motivation!

Thank You!