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SUBJECTIVE FATIGUE, ASSOCIATED VARIABLES

AND PERFORMANCE IN PEOPLE WITH COPD

BY

MARY C. BCAPELLA
B.S.N. Aurora University, 1990
M.S. University of Illinois at Chicago, 1994

THESIS

Submitted as partial fulfillment of the requirements

for the degree of Doctor of Philosophy in Nvirsing Science
in the Graduate College of the
University of Illinois at Chicago, 2003

Chicago, Illinois
 UMI Number: 3111432

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 THE UNIVERSITY OF ILLINOIS AT CHICAGO
Graduate College
CERTIFICATE OF APPROVAL

I hereby recommend that the thesis prepared under my supervision by

MARY C. KAPELLA
SUBJECTIVE FATIGUE, ASSOCIATED VARIABLES AND PERFORMANCE
entitled
IN PEOPLE WITH COPD

be accepted in partial fulfillment of the requirements for the degree of

DOCTOR OF PHILOSOPHY

r (Chairperson of Defe^ Commmee)

I concur with this recommendation

Dq)artment Head/Chair

Repe^nmendation concurr^ in:

Members of
Thesis or
Dissertation
Defense
Committee

I University of Illinois
at Chicago
 This thesis is dedicated to my parents, Helen and the late Robert Krieger, without whom
it would never have been accomplished. They fostered in me the confidence, dedication and
persistence it takes to achieve such a high goal.

iii
 ACKNOWLEDGEMENTS

First and foremost I thank Dr. Janet Larson for her unflagging support. She gave me academic
guidance, mentoring and kept me employed throughout my doctoral studies. Her timeliness in
returning the many drafts did not go unnoticed.

I would also like to thank the people who participated in my research as subjects. They
graciously welcomed me into their homes and were so cooperative in completing the
questionnaires. Without them the study would never have taken place.

A number of pulmonologists helped me recruit patients as subjects. Thanks to the

Midwest Pulmonary Consultants, Dr. Glenda Flemister,and Dr. Rong S Tu for allowing me to
send recruitment letters to their patients. I am grateful to Dr. George Cromydas and Lyn Tepper
for allowing me to speak to a group of patients in pulmonary rehabilitation.

The insightful comments of my dissertation committee members, Dr. Jean Berry, Dr. Nancy
Kline Leidy, Minu Patel and Dr. Carol Ferxans were crucial for developing the study and
completing the analysis. I appreciate the time and attention they gave to my work.

Thanks also to my family for their emotional support throughout the long, long process. I extend
thanks especially to my children Wendy and Matthew and to my husband, Steve for helping me
in so many ways. His promptness in providing feedback and making so many copies for me was
greatly appreciated.

Finally, I wish to acknowledge my friends who listened to me moan, rejoice, complain and
laugh my way through these past years. Without their confidence I could never have completed
the project.

iv
 TABLE OF CONTENTS

CHAPTER PAGE

L INTRODUCTION 1
A. Background 1
B. Purpose of the Study 2
C. Significance of the Problem 3

II. CONCEPTUAL FRAMEWORK AND RELATED LITER.\TURE 4

A. Conceptual Framework 4
1. Fatigue as a subjective phenomenon 4
2. Subjective fatigue as an unpleasant symptom 7

B. Review of Related Literature 11

1. Nature of subjective fatigue 11
2. Subjective fatigue and dyspnea 15
3. Subjective fatigue and functional performance 16
4. Dyspnea, other symptoms and functional performance 17
5. Key variables associated with subjective fatigue 18
a. Physiologic 18
b. Psychologic 19
c. Sleep quality 20
6. Summary and conclusion 21

III. METHODOLOGY 23
A. Design 23
B. Sample 23
1. Selection criteria 23
2. Recruitment strategy 24
C. Instrumentation 25
1. Subjective fatigue 26
a. Numerical Rating Scale 26
b. Profile of Mood States Fatigue-Inertia subscale 27
c. Fatigue Assessment Instrument 30
2. Dyspnea 31
3. Functional performance 33
4. Disease severity 35
5. Anxiety and depressed mood 35
6. Sleep quality 37
7. Demographics 38

v
 TABLE OF CONTENTS (continued)

CHAPTER PAGE

D. Procedures 38
E. Data Analyses 39

IV. RESULTS 41
A. Description of the Sample 41
1 Sample characteristics: Background 41
2. Sample characteristics: Disease-related 41
B. Comparison of Fatigue and Dyspnea Dimensions 43
1. Overall fatigue and dyspnea 43
2. Dimensions of fatigue and dyspnea 45
C. Characteristics of Fatigue 45
D. Sleep Quality and Affective States 47
E. Factors Predicting Subjective Fatigue 50
F. Functional Performance 50
G. Subjective Fatigue; Final Path Model 52

V. DISCUSSION 57
A. Discussion of the Findings 57
1. Characteristics of subjective fatigue 57
2. Factors directly related to subjective fatigue 62
a. Dyspnea 62
b. Sleep quality 62
c. Functional performance 64
d. Depressed mood 67
3. Factors indirectly related to subjective fatigue 67
a. Anxiety 67
b. Airflov/ obstruction 68
B. Limitations 68
C. Contributions to Knowledge 69
D. Future Research 70

CITED LITERATURE 71

APPENDICES 82
Appendix A 83
Appendix B 84

vi
 TABLE OF CONTENTS (continued)

CHAPTER PAGE

Appendix C 87
Appendix D 88
Appendix E 98
Appendix F 99
Appendix G 100
Appendix H 103
Appendix I 104
Appendix J 105

VITA 106

vii
 LIST OF TABLES

TABLE PAGE

I QUALITY OF SUBJECTIVE FATIGUE IN PEOPLE WITH COPD 14

II VARIABLES AND MEASURES 25
III FATIGUE INSTRUMENTS 28
IV ASSOCIATED VARIABLES INSTRUMENTS 34
V SAMPLE CHARACTERISTICS 42
VI SAMPLE CHAR.ACTERISTICS: DISEASE-RELATED 43
VII DESCRIPTIVE STATISTICS: FATIGUE AND DYSPNEA 44
VIII PEARSON CORRELATIONS BETWEEN FATIGUE DIMENSIONS 46
IX PEARSON CORRELATIONS BETWEEN DYSPNEA DIMENSIONS 46
X PEARSON CORRELATIONS BETWEEN NRS FATIGUE
DIMENSIONS AND ILLNESS-RELATED VARIABLES 46

XI DESCRIPTIVE STATISTICS: ASSOCIATED VARIABLES 48

XII PERSON CORRELATIONS: KEY VARIABLES 49

XIII FACTORS PREDICTING NRS FATIGUE: MULTIPLE STEPWISE

REGRESSION 51

XIV FACTORS PREDICTING FUNCTIONAL PERFORMANCE:

MULTIPLE STEPWISE REGRESSION 52

XV PATH ANALYSIS: SUBJECTIVE FATIGUE AND

FUNCTIONAL PERFORMANCE 55

XVI SUMMARY OF MULTIPLE REGRESSION IN THE FINAL PATH

MODEL 56

XVII COMPARISON OF POMS SCORES WITH NORMS 59

XVIII COMPARISON OF FAI SCORES: PREVIOUS STUDY WITH CURRENT

STUDY 60

viii
 LIST OF FIGURES

FIGURE PAGE

1 HYPOTHESIZED FATIGUE MODEL 10

2 FINAL PATH MODEL 54

ix
 LIST OF ABBREVIATIONS

AN OVA Analysis of Variance

[3 Standardized Regression Coefficient

BMI Body Mass Index

CFI Comparative Fit Index

COPD Clironic Obstructive Pulmonary- Disease

CRQ Chronic Respiratory Disease Questionnaire

df Degree of Freedom

F Fisher's F ratio

FAI Fatigue Assessment Instrument

FEV| % pred Percent Predicted Forced Expiratory Volume in One Second

FPI Functional Performance Inventory

IFI Incremental Fit Index

SLE Systemic Lupus Erythematosus

M Mean

MANOVA Multivariate Analysis of Variance

MS Multiple Sclerosis

NFI Normed Fit Index

NRS Numerical Rating Scale

p Probability

POMS Profile of Mood States

X
 LIST OF ABBREVIATIONS (continued)

PSQI Pittsburgh Sleep Quality Index

r Pearson Product-Moment Correlation

R- Pearson Product-Moment Correlation Squared

SD Standard Deviation

SPSS Statistical Package for the Social Sciences

t Computed value of t test

X" Chi-square

xi
 SUMMARY

A study of the multidimensional experience of fatigue was carried out using a descriptive,

cross-sectional approach. The sample of 130 people age 45 years and older with moderate to

severe COPD were briefly interviewed by phone, had spirometry testing and completed a

questionnaire.

The specific aims were 1) to describe characteristics of fatigue in people with COPD ; 2)

to test a theoretically and empirically supported model of the relationships among subjective

fatigue and dyspnea, functional performance, amciety, depressed mood and sleep quality in

people with COPD. A model of fatigue was proposed based on research of subjective fatigue in

chronic diseases and the theory of unpleasant symptoms (Lenz, Pugh, Milligan, Gift, & Suppe,

1997; Lenz, Suppe, Gift, Pugh, & Milligan, 1995). Path analysis was used to examine the

relationships among variables.

Subjects reported moderate amounts of fatigue with women reporting more intense

fatigue than men. Subjects also reported significant difficulty with sleep quality. Dyspnea,

depressed mood and sleep quality accounted for 42% of the variability in subjective fatigue.

Fatigue, dyspnea, airflow obstruction and anxiety accounted for 36% of the variability in

functional performance.

These findings suggest that fatigue is a common problem that affects performance of

daily activities in people with COPD. In addition to dyspnea, assessment and interventions for

people with COPD who report fatigue should focus on depressed mood, anxiety and sleep

quality. We anticipate that researchers and clinicians will use knowledge derived from this study

to develop interventions that will minimize fatigue and its effects in people with COPD.

xii
 I. INTRODUCTION

A. Background

Chronic obstructive pulmonary disease (COPD) is one of the most common respiratory

disorders in the developed world. In the United States t\vo million cases of emphysema are

reported annually with 47.1 cases per 1000 persons between the ages of 65 to 74 and 43.4 cases

per 1000 people 75 years of age or older (Adams & Marano, 1995). Chronic obstructive

pulmonary disease ranks fifth in the United States as cause of death in people 45 to 64 years of

age and fourth as cause of death in people 65 years and over (Anderson, Kochanek, & Murphy,

1997). Chronic obstructive pulmonary disease affects people in many ways. People with this

disease sustain periodic exacerbations during which they feel short of breath or unable to breathe

adequately. In addition to dyspnea people with COPD often have fatigue, depressed mood,

anxiety, and problems with sleep. They struggle with managing daily activities and treatment

regimens.

Relatively little is known about subjective fatigue and its effects on people with COPD

but evidence suggests that it is a common problem and is associated with decreases in functional

status. In a crossectional study Chen found that 31% of men and 27% of women with

emphysema experienced subjective fatigue (Chen, 1986).

Research in other chronic illnesses indicates that the fatigue experience varies in different

illnesses, suggesting that fatigue experienced by individuals with COPD may have

characteristics unique to the disease (Glaus, Crow, & Hammond, 1996; Smets, et al., 1998b). For

1
 2

example, in a recent qualitative study, Small and Lamb found that the fatigue experienced by

people with COPD was more persistent in nature than that experienced by individuals with

asthma (Small & Lamb, 1999). In people with Parkinson's disease physical fatigue was

independent of mental fatigue and the two symptoms needed to be assessed separately (Lou,

Keams, Oken, Sexton. & Nutt, 2001). And in subjects with rheumatoid arthritis pain was an

important factor influencing the level of fatigue (Belza, Henke, Yelin, Epstein. & Gillis, 1993).

Little is currently known about the specific nature of subjective fatigue in people with

COPD, its impact on daily life and its relationship with dyspnea and key variables known to be

associated with subjective fatigue in other chronic illnesses. Only a few studies focused on the

symptom of fatigue (Breslin, van der Schans, Breukink, Mercer, & Volz, 1997; Breukinlc,

Strijbos, & Groningen, 1997; Gift & Shepard, 1999; Woo, 2000a; Woo, 2000b)]. Most of the

knowledge about fatigue in COPD comes from studies focusing on dyspnea or on a broader

cluster of symptoms including fatigue.

B. Purpose of the Studv

The purpose of this study was to examine subjective fatigue and related variables in a

group of people with COPD. The specific aims were 1) to describe the multidimensional nature

of fatigue; 2) to test a theoretically and empirically supported model of the relationships among

subjective fatigue, dyspnea functional performance and other key variables such as disease

severity, anxiety, depressed mood and sleep quality in people. The model of unpleasant

symptoms was used for the study (Lenz, Pugh, Milligan, Gift, & Suppe, 1997; Lenz, Suppe, Gift,

Pugh, & Milligan, 1995).

 0

This study describes the symptom of fatigue, focusing on chnically relevant information

and extends knowledge of the multidimensional nature of fatigue. A better understanding of

variables that influence fatigue in COPD will be useful in identifying people at risk for fatigue.

Moreover, clarifying the relationship between fatigue and associated symptoms and outcomes

could provide rationale for specific interventions. In the long-term it is anticipated that

knowledge derived fi^om this study will be used in designing and testing of interventions to

minimize the effects of fatigue .

C. Significance of the Problem

Fatigue is one of the two most important symptoms affecting the lives of people with

COPD (Breslin, et al., 1998; Breukink, Strijbos, Koom, Koeter, & Breslin, 1998; Carrieri-

Kohlman, Gormley, Douglas, Paul, & Stulbarg, 1996b; Gift & Shepard, 1999; Guyatt, Berman,

Townsend, Pugsley, & Chambers, 1987; Janson-Bjerklie, Carrieri, & Hudes, 1986) and is an

important component of health-related quality of life (Guyatt, Feeney, & Patrick, 1993). Fatigue

interferes with the ability to perform daily (Breslin, et al., 1998; Leidy & Haase, 1999).

Inactivity caused by fatigue may lead to physical deconditioning and muscle weakness which

may then lead to a reduced ability to perform normal daily activities (Nail & Winningham,

1995). Fatigue may also be a sign of changing or worsening condition in people with respiratory

disease (Eidelman, 1980).

 11. CONCEPTUAL FRAiMEWORK AiND RELATED LITERATURE

A. Conceptual Framework

L Fatigue as a subjective phenomenon

Researchers have tried to define fatigue since the 1800s but there is still no

consensus on the definition. Anecdotal information before the year 1900 indicates that

researchers thought that fatigue was caused by the "fatigue toxin" (Dill, 1967). Then, around the

turn of the century, the Harvard Fatigue Laboratory opened to study fatigue through the

combined efforts of researchers from medicine, chemistry, physiology, sociology, and

ergonomics and thus began a trend toward multidisciplinary examination of the symptom.

During World War II there was a great interest in fatigue experienced during military service.

From the opening of the Harvard Fatigue Laboratory to its closing in 1946, the study of fatigue

moved from the area of chemistry to ergonomics. Researchers described fatigue as various

disagreeable sensations experienced by men during activity. Although the focus was on muscle

fatigue, fatigue was described as "simultaneous changes of many things, tending toward a

condition in which it is no longer possible to carry on "(Dill, 1967).

Muscio (1921) had defined fatigue not as "various disagreeable sensations," but a variety

of unrelated phenomena, perhaps beginning to identify its multidimensional nature. In 1947

Bartley and Chute, drawing on their work in the area of aerospace, defined fatigue as subjective

feelings of lassitude and disinclination toward activity (Bartley & Chute, 1947). They saw

fatigue as a generalized response to stress over a period of time. There was an emphasis on the

chronicity of the sensation.

4
 5

In 1955 Burkliardt from Cornell University suggested that fatigue be defined by the

person experiencing it. His definition included adjectives such as "all tired out," "weakness,"

"weariness", "inability to sustain interest and effort", and "difficulty performing tasks." There

was great emphasis at the time on physiologic, pathologic and psychologic variables thought to

be related to fatigue. Measures for fatigue were largely objective in nature and included

laboratory blood tests and measures of attention and reaction (Burkhardt, 1955).

In the mid - to late - 1960s Grandjean, a researcher in the area of ergonomics, wrote a

series of articles describing and defining fatigue and noting a difference between general fatigue

and muscle fatigue. He compared general fatigue to the level of liquid in a container with

different sources of life stresses filling the container with more and more fatigue. Symptoms of

general fatigue were decreased attention, slowed and impaired perception and thinking,

decreased motivation, and decreased performance (Grandjean, 1968). Grandjean discussed

variables that influenced general fatigue such as the balance between the reticular activating

system and cortical inhibition and the role of these variables in determining the amount of

general fatigue the person experienced. He placed general fatigue on a continuum of "sleepy" to

"alert" with fatigue feelings ranging from " tiredness" to "exhaustion". Grandjean developed a

visual analogue scale for fatigue and observed that subjective fatigue correlated weakly with

measures of attention and reaction (Grandjean, 1970).

In 1971 Yoshitake, from the area of ergonomics, defined fatigue as a complex of

unpleasant feelings and incongruous physical, mental and sensory-neuro feelings. He suggested

a separation of the feelings and sensations of subjective fatigue from behavior (Yoshitake, 1971).
 6

Behavior, or performance, was considered further by Cameron in 1973 who emphasized the role

of recovery time in determining the intensity of subjective fatigue and described the importance

of considering what the person's behavior was before developing fatigue in measuring

performance at the time of fatigue (Cameron, 1973). By this time, the idea of fatigue as a

subjective sensation was beginning to be accepted and more and more, researchers were

approaching fatigue from a subjective point of view.

Eidelman (1980) used Selye's General Adaption Syndrome to explain that variables (such

as stressors) may affect the "latent capacity" i.e. "physiological potential of a tissue or organ at

any given moment" of a person and lead to subjective fatigue. He defined subjective fatigue as a

signal of reduced latent capacity whose state is constantly monitored by the brain. He fiarther

described subjective fatigue as the possible sought-after non-specific alarm signal of the body.

Although Eidelman used a physiologic framework for his definition of fatigue, he also used a

psychologic framework for his definition of subjective fatigue. He postulated that subjective

fatigue was the result of continuous repetition of mental processes ~ worry. Eidelman's work

provided strong support for the idea that subjective instruments should be used to measure

subjective fatigue.

In the last twenty years researchers including several from the areas of nursing and

psychology continue to refine the definition of fatigue. Instnmients for its measurement reflect

those definitions with items referring to the general sensation associated with the symptom

(McNair, Lorr, &Droppleman, 1971,1981,1992), its elements (Piper, et al, 1989; Smets,

Garssen, Bonke, & JCJM., 1995; Yellen, Cella, Webster, Blendowski, & Kaplan, 1997), and

dimensions (Belza-Tack, 1991; Piper, et al, 1989).

 7

For the purpose of the proposed study subjective fatigue is defined based on the

definition of Aaronson and colleagues (1999). It is the multidimensional sensation of tiredness

that the individual experiences when perceiving the reduced capacity to function normally. The

sensation of tiredness is due to "an imbalance in the availability, utilization and/or restoration of

resources needed to perform activity" (Aaronson, et al., 1999). "Multidimensional" means that

the sensation includes dimensions such as intensity, frequency, and distress. The phrase

"sensation that the individual experiences" implies that the fatigue experience is unique to each

person and that the qualities associated with it may be dependent upon the individual's own

interpretation of the state. The term "perceiving the reduced capacity to function normally"

refers to a feeling of reduction in the potential to perform activities necessary to meet their needs

(Leidy, 1994). For this definition subjective fatigue includes whole body sensation (Grandjean,

1968; Ream & Richardson, 1996) which incorporates the individual's awareness of mental,

emotional and physical ability being reduced. Because subjective fatigue is defined here as a

subjective sensation, objective measures such as biochemical markers and measures of attention

and reaction are used to examine antecedents or consequences of the symptom but not the

symptom itself

2. Subjective fatigue as an unpleasant symptom

The theory of unpleasant symptoms is a middle - range theory. According to this

theory there are shared characteristics among symptoms. This implies that interventions

targeting one symptom may also affect other symptoms. The three components of the theory are

1) the symptom, 2) influencing variables with respect to the symptom, 3) consequences of the

symptom (Lenz, Pugh, Milligan, Gift, & Suppe, 1997; Lenz, Suppe, Gift, Pugh, & Milligan,

1995).
 8

According to the theory of unpleasant symptoms the symptom is a multidimensional

experience which can be measured alone or together with other symptoms. Dimensions of the

symptom include quality, intensity, fi^equency and distress. Quality refers to what the symptom

feels like to the person and can be operationalized by descriptors of feelings and location.

Intensity refers to the severity or strength of the symptom. The temporal dimension refers to the

frequency and duration of the symptom or when it occurs in the person's life. Distress is defined

as the degree to which the person is bothered by the symptom and is conceptualized as a

dimension important to the quality of life of the person experiencing the symptom. According to

the theory of unpleasant symptoms physiologic, psychologic and situational variables may

influence symptoms such as fatigue (Lenz, Pugh, Milligan, Gift, & Suppe, 1997; Lenz, Suppe,

Gift, Pugh, & Milligan, 1995). And there may be complex cyclical interactions of symptoms

with other variables.

Many researchers examining fatigue in people with chronic illness propose that the

symptom is multidimensional in nature but consensus has not yet been reached on the actual

dimensions inherent in the symptom. Dimensions identified for subjective fatigue include

elements such as mental (cognitive), physical and general feelings of fatigue (Grandjean, 1968;

Yoshitake, 1978). Additional elements include lack of exercise tolerance and decreased activity

(Belza-Tack, 1991; Piper, et al., 1989), emotional aspects of the sensation of fatigue such as

fhistration (Cella, 1997) as well as the dimensions proposed by the theory of unpleasant

symptoms (intensity, frequency, quality and distress). The measurement of fatigue in people

with COPD has until recently consisted of measuring one or two dimensions, intensity being the

most frequent dimension measured.

 9

A model was developed to describe the relationships among factors that may influence

subjective fatigue, dimensions of the symptom and their impact on the performance of daily

activities (functional performance) (Figure 1). The model was based on clinical observation,

empirical studies of fatigue in COPD and other chronic illnesses and the theory of unpleasant

symptoms.

B. Review of Related Literature

This literature review describes the nature of subjective fatigue as currently understood,

its impact on the functional performance, and its relationship with dyspnea and key variables

previously found to be associated with subjective fatigue in chronic illnesses. It covers empirical

papers published in medical and nursing journals from 1975 to 2002. Dissertations are also

included. MEDLINE, Dissertation Abstracts International and CINAHL searches were

undertaken to retrieve citations of studies with fatigue as a primary focus. Search terms used for

the review included fatigue, fatigue and COPD, fatigue and lung disease, fatigue and function.

Search terms also included dyspnea, sleep quality and functional performance in people with

COPD as a focus. Papers were reviewed if the researchers described fatigue in COPD or

examined factors associated with fatigue in COPD, cancer, multiple sclerosis or arthritis. Both

quantitative and qualitative studies were included. Interventional studies were not included.

Reference lists of publications were examined for relevant studies to include in the review.
 10

AIRFLOW
OBSTRUCTION

ANXIETY
DYSPNEA

2 FUNCTIONAL i
PERFORMANCE

DEPRESSED
MOOD
FATIGUE

SLEEP
QUALITY

Figure 1. Hypothesized fatigue model

 11

1. Nature of subjective fatigue

When asked to describe a symptom, a person may create a picture representative

of their usual experience with it (Teel, Meek, McNamara, & Watson, 1997). People describing

fatigue may include the intensity and frequency of the symptom, the quality or characteristics

commonly associated with it and the distress they experience from it.

a. Intensity

Evidence suggests that the sensation of subjective fatigue is moderate in

intensity in people with COPD. Breslin and colleagues (1998) reported higher levels of fatigue

intensity in people with COPD compared to healthy people. In a study of 104 people with

COPD, Gift and Shepard found that both men and women reported moderate levels of subjective

fatigue intensity when measured using the Energy/Fatigue subscale of the Medical Outcomes

Study SF-36 (Gift & Shepard, 1999). Woo (2000a, 200b)observed relatively high fatigue

intensity in subjects with moderate COPD, Belza and associates (2001) reported moderate

fatigue intensity in 63 people (mostly men) with COPD and Reishtein (2001) observed moderate

fatigue intensity in 100 people with moderate COPD. Women and men differed in terms of

subjective fatigue intensity when measured using a numerical rating scale. Women reported more

intense fatigue (Gift & Shepard, 1999).

Subjective fatigue intensity was similar in other chronic illnesses. Belza-Tack (1991)

observed that older adults with rheumatoid arthritis reported moderate levels of fatigue intensity.

Researchers observed moderate to high levels of fatigue intensity in people with cancer (Mock,

Hassey Dow, & Grimm, 1997; Smets, Garssen, Cull, & de Haes, 1996).
 12

b. Frequency

Three studies suggest that fatigue is a frequent occurrence in people with

COPD. Guyatt and colleagues (1987) observed that fatigue frequency and importance was high

in a sample of 100 people with chronic airflow limitation. Graydon and associates (1995)

reported prevalent fatigue frequency in 71 people with severe COPD. And Gift and Shepard

(1999) found that people with COPD reported a lack of energy one to four times during the

previous week.

Studies examining subjective fatigue in other chronic diseases have found temporal

patterns associated with the symptom. Patterns in the frequency and intensity of subjective

fatigue during phases of illness were found in people with cancer (Berger, 1998; Smets, et al.,

1998a; Smets, et al., 1998b). For example, in a study of 154 cancer patients, subjective fatigue

intensity increased during the time the person was undergoing radiotherapy and then declined

after finishing treatment (Smets, et al., 1998b). Pattems in the experience of subjective fatigue in

multiple sclerosis and psychiatric illness have been reported, with the symptom being

experienced to a greater extent later in the day and with lowest levels in the morning (Hart, 1978;

Lee, Hicks, & Nino-Murcoa, 1991).

a. Quality

The quality of fatigue was described in three studies. In her dissertation

work, Pardue (1984) studied fatigue in a sample of 68 people with mild to severe COPD. She

found that people with severe COPD complained more about general tiredness, decreased

exercise tolerance and emotional reactions to fatigue (decreased motivation and anxiety) than

about specific mental and physical symptoms of fatigue. In a qualitative study. Ream and

Richardson found that people with COPD felt drained of energy, exhausted, and too tired to plan
 13

activities. Physically they complained of aching in the arms and legs. Emotionally they felt not in

control and frustrated. They grieved over the loss of their previous lifestyle and didn't want to go

far from home (Ream & Richardson, 1997). People commented on the household activities they

were forced to give up because of their fatigue. Loss of concentration was less of a problem for

people with COPD. In these studies and a recent qualitative work people with COPD described

their subjective feelings of fatigue as "tiredness" that affected them physically, emotionally and

socially (Small & Lamb, 1999).

Pardue and Ream and Richardson reported that cognitive symptoms of fatigue were less

problematic for people with COPD than general feelings of fatigue and its impact. But a recent

observation by Breslin and colleagues supported the notion that the cognitive element plays a

role in fatigue experienced by people with this disease. In a study of 41 people with COPD, the

mental or cognitive element of fatigue correlated with impairment in health-related quality of life

(r=.38) (Breslin, et al., 1998). Importance of the cognitive element of fatigue in people with

COPD is not yet clear. In this study subjects also reported a feeling of reduced activity and

lower motivation that was greater than in a healthy group. Table I summarizes findings on the

quality of fatigue in people with COPD.

b. Distress

Results of recent studies support the notion that fatigue causes a

considerable amount of distress in the person experiencing it. In a study of 104 people with

COPD, both men and women reported distress associated with fatigue and women were observed

to be more distressed than men in terms of their fatigue (Gift & Shepard, 1999). These results are

similar to those found by researchers studying fatigue distress in people with cancer. McCorkle

and Young (1978) observed moderate and high levels of fatigue distress in 18 of 45 cancer
 TABLE I

QUALITY OF SUBJECTIVE FATIGUE IN PEOPLE WITH COPD

GcncrnI I'iicdncss IMiyslcal Klcnicnt Cognilivc Reduced AcllvKy luiioflonnl Kluincnf

Element
(Piirduc, 1984) -feelings of general tiredness -less probleninlic -less problcniHiic -decreased exercise tolerance -decreased motivation
was most problenuuic anxiety

(Ream & -too tired to phin iiclivities -aching in the arms and -less problematic -didn't want to go far from -loss of control
Richiirdson, 1997) -exhausted legs than in cancer home -frustration
-drained of energy -different in people patients -forced to give up household -grief
with COPD than in activities -insecure about leaving home
those with cancer

(Brcslin ct ill., -general feelings of fatigue -greater feeling of reduced -lower niotis'alion in COPD compared to
1998) were higher than in a noi mal activity compared lo normal normal sample
snnipic sample

(Small & Lamb, -feelings of tiredness -labored breathing in -dccreascd ability to -gradual dcclinc in the ability to -irritabilily
1999) -lack of energy conjimciion with concentrate carry out daily activities
-different than ordinary fatigue -frustration
fatigue
-more continuous problem
for people with COPD than
those with asthma

I-"
patients. Holmes (1989) found that 43% of respondents with cancer reported significant distress

from fatigue.

In summary, previous research on subjective fatigue in people with COPD supports the

idea that it is an intense, frequent and distressing problem with potential physical, social and

emotional impact. Changing patterns in subjective fatigue may occur during phases of illness and

on a daily basis.

2. Subjective fatigue and dvspnea

Dyspnea is a common symptom in people with COPD and it is possible that it is

one of several key stressors that lead to feelings of fatigue. Kinsman and colleagues (1983)

measured dyspnea and fatigue frequency in 146 people with chronic bronchitis and emphysema.

They found that the two symptoms were highly related (r=.76) and that dyspnea did not emerge

separately from fatigue in cluster analysis. In another study Janson - Bjerklie and colleagues

reported that 45% of 68 people with lung disease described their dyspnea as fatigue (Janson-

Bjerklie, Carrieri, & Hudes, 1986). And Reistein (2001) observed a correlation between fatigue

and dyspnea (.43) in 100 people with moderate COPD.

There is some evidence that dyspnea leads to fatigue. Results of a path analysis suggested

that dyspnea intensity influenced fatigue (Moody, McCormick, & Williams, 1990). Gift and

Shepard (1999) found that dyspnea and physical symptoms predicted 42% of the variance in

subjective fatigue, suggesting that dyspnea may lead to fatigue. And most recently, Small and

Lamb in their qualitative study observed a close connection between subjective fatigue and

dyspnea with informants feeling that their fatigue was a result of dyspnea (Small & Lamb, 1999).

Although fatigue frequently accompanies dyspnea, each symptom may be unique in how it
 16

affects the person experiencing it (Guyatt, Berman, Townsend, Pugsley, & Chambers, 1987;

Jones, 1998; Wijkstra, et al, 1994b).

In addition to the relationship between fatigue and dyspnea, previous research suggests

that there are positive relationships between anxiety and dyspnea intensity (Anderson, 1995; Gift,

Plaut, & Jacox, 1986; Mishima, et al., 1996) and depressed mood and dyspnea intensity

(Anderson, 1995; Kellner, Samet, & Pathak, 1992; Mishima, et al., 1996) in people with COPD,

but it is yet unclear to what extent anxiety and depressed mood are both causes and/or effects of

dyspnea. It is possible that anxiety and dyspnea experienced by people with severe disease lead

to increases in muscle tension and respiratory rate and ultimately to subjective fatigue (Knebel,

1998).

3. Subjective fatigue and functional performance

Subjective fatigue is associated with decreases in functional performance.

Prigatano and colleagues (1984) reported a correlation of r = .59 between fatigue intensity

measured using the POMS Fatigue/Inertia subscale and functional performance measured by the

Sickness Impact Profile (SIP) in a sample of 100 people with COPD. Graydon and Ross (1995)

reported a direct influence of symptoms including fatigue on fiinctional performance measured

by the Sickness Impact Profile via path analysis. Three recent studies provide additional support

for the notion that subjective fatigue has a negative impact on functional performance in people

with COPD. Fatigue was associated with reduction in motivation to carry out activities, reduction

in activity and exercise tolerance and had a negative impact on the daily life of the person with

COPD (Breslin, et al, 1998). A negative correlation (0.62) was observed between fatigue and

functional performance in 22 people with COPD (Leidy & Knebel, 1999). And fatigue was
 17

negatively related to functional performance in 100 people with moderate COPD (Reishtein,

2001).

A negative relationship between subjective fatigue levels and functional performance is

also supported by several studies in people with chronic diseases other than COPD. Negative

associations between the intensity of fatigue and the ability to carry out everyday activities were

found in people with cancer (Meyerowitz, Sparks, & Spears, 1979; Mock, Hassey Dow, &

Grimm, 1997; Sama & Brecht, 1997). Negative associations between total subjective fatigue

scores and performance were also reported in people with arthritis (Belza, 1995). And Schwartz

and colleagues reported that subjective fatigue limited social, work and overall performance in

people with multiple sclerosis (Schwartz, Coulthard-Morris, & Zeng, 1996).

4. Dvspnea. other symptoms and functional performance

Dyspnea intensity has been negatively associated with functional performance in

many studies. In a study by Mahler and colleagues changes in dyspnea intensity, impairment and

effort were associated with change in physical function (Mahler, et al., 1992). Leidy and Traver

(1995) observed that a combination of symptoms including dyspnea significantly predicted

functional performance in women and that postwalk dyspnea was a significant predictor of

functional performance in men. Weaver and others reported a direct influence of dyspnea

intensity on performance of daily activities (Weaver, Richmond, & Narsavage, 1997). And

Reistein (2001) observed that dyspnea predicted functional perfonnance in 100 people with

moderate COPD . The frequency of the symptoms of fatigue, dyspnea, congestion and peripheral
 18

sensory complaints together have also been positively associated with impaired functioning in

several studies (Graydon & Ross, 1995; Graydon, Ross, Webster, Goldstein, & Avendano, 1995;

Kinsman, Femandez, Schocket, Dirks, & Covino, 1983; Leidy & Traver, 1995; Traver, 1988).

5. Kev variables associated with subjective fatigue

Although the mechanisms of subjective fatigue are not completely understood

there is evidence that many factors contribute to the development of subjective fatigue. Certain

physiological, psychological and situational variables are known to affect levels of subjective

fatigue in people with chronic illnesses.

a. Physiologic

To date, evidence supports a weak association between subjective fatigue

and severity of airflow obstruction in people with COPD. In her dissertation study on a sample of

68 people with COPD, Pardue (1984) observed a correlation (T=-.43) between the frequency of

fatigue and severity of airflow obstruction (FEVl). Breslin and colleagues (1998) found a weak

correlation be^veen FEVl percent predicted and general fatigue (i=-.32) in 41 people with

COPD. And most recently, Gift and Shepard (1999) found no significant correlation between

subjective fatigue and airflow obstruction as measured by FEVl percent predicated in a study of

104 people with COPD.

The interplay of physiologic processes that are responsible for the general feeling of

subjective fatigue might be very complex in people with COPD. Measuring spirometry alone

does not capture all physiologic factors. To capture the physiologic factor it would be useful to

add measures of other physiologic parameters to characterize the physical status of people with
 19

COPD. These could include body mass index, strength measures, levels of stress hormones and

exercise capacity to get a clearer picture of the total physical status of the person and

physiological factors of the person that contribute to the feeling of subjective fatigue. However

the comprehensive measurement of the physiologic factors exceeds the scope of this research.

The FEVl percent predicted was used to reflect disease severity.

b. Psvchologic

According to the theory of unpleasant symptoms, in addition to the

relationships between psychological factors and symptoms the relationships between

psychological factors themselves also need to be considered. In people with COPD, previous

research supports a positive relationship between anxiety and depressed mood (Anderson, 1995)

with anxiety leading to depressed mood in this population and depressed mood interfering with

flmctional performance (Weaver, Richmond, & Narsavage, 1997).

There is evidence of a positive association between psychological factors such as anxiety

and depressed mood and fatigue in people with COPD. Chen (1986) found that anxiety and

depressed mood were independent predictors of fatigue in subjects including people with

arthritis, anemia and COPD. Graydon and Ross (1995) observed that anxiety and depressed

mood were highly associated with symptoms including fatigue. And Gift and Shepard (1999)

reported a moderate association between psychological factors and fatigue (i=.52). Results of

two studies suggest that fatigue may lead to depressed mood in people with COPD (Graydon &

Ross, 1995; Moody, McCormick, & Williams, 1990).

 20

Positive relationships between anxiety,depressed mood and fatigue in people with other

chronic diseases are well documented in the literature. Wysenbeek and associates (1993)

reported a positive correlation between anxiety and subjective fatigue intensity (r=.34) in people

with systemic lupus erythematosus. Positive associations between depressed mood and fatigue

were observed in people with arthritis (r=.47) (Belza, Henke, Yelin, Epstein, & Gillis, 1993) and

renal failure (Cardenas & Kutner, 1982; Sklar, Riesenberg, Silber, Ahmed, & Ali, 1996). Mock

and colleagues (1997) found that in people with cancer those with higher fatigue levels reported

more anxiety and depressed mood than a group with lower fatigue levels. And McCorkle and

colleagues observed moderate positive correlations between low mood and fatigue intensity

(r=.60) in people with cancer (McCorkle & Quint-Benoliel, 1983; McCorkle & Young, 1978).

c. Sleep quality

Little research was found specifically describing the relationship between

subjective fatigue and sleep quality in people with COPD but there is evidence that sleep quality

is a problem. One study of 55 subjects with emphysema reported significant differences between

emphysema subjects and control subjects for disorders of initiating and maintaining sleep and

excessive daytime sleepiness (Klink & Quan, 1991). Kinsman et al. (1983) found that nearly

53% of subjects reported a high frequency of sleep difficulties. Traver (1988) observed that

sleep difficulty was one of the most frequently mentioned symptoms in people with COPD.

Leidy (1995) in a literature review of ftinctional performance found that sleep disturbance

reported on the Sickness Impact Profile was high across studies of people with COPD.
 21

Subjective fatigue is negatively associated with sleep quality in several chronic illnesses.

McCorkle and Young (1978) found a significant correlation (r=.55) between subjective fatigue

and insomnia in people with cancer. Additionally, Mock (1997) reported positive correlations

between subjective fatigue and low sleep quality (r=.54) in people with cancer. Higher levels of

subjective fatigue were associated with lower quality sleep in studies of people with arthritis.

Jones and colleagues found in a study of people with artliritis that a group with subjective fatigue

reported lower sleep quality with a greater amount of fatigue upon awakening (Jones, Koh,

Steiner, Garrett, & Calin, 1996). And significant correlations were observed between subjective

fatigue and sleep quality (r= .58 and .54 respectively) in two other studies of people with arthritis

(Belza, 1995; Wolfe, Hawley, & Wilson, 1996).

Sleep quality may contribute to the subjective fatigue experienced by people with COPD.

Furthermore, anxiety and depressed mood, experienced by people with COPD, may negatively

influence sleep quality. This notion has much support from recent research in healthy people as

well as those with chronic illnesses (Gillin, 1998; Hauri & Esther, 1990; Sandor & Shapiro,

1994; Zammit, Weiner, Damato, Sillup, & McMillan, 1999). The true relationship between

subjective fatigue and sleep quality in this disease remains to be determined.

6. Summary and conclusion

Although some progress has been made, there are significant gaps in

knowledge of fatigue in people with COPD. The majority of the studies examining fatigue in

people with COPD have been crossectional studies with small sample sizes. Results of

qualitative and crossectional studies thus far suggest that fatigue is one of the two most common

symptoms, occurs in moderate levels and that it is distressing to those experiencing it. Although
results of one study suggest that fatigue levels in people with COPD are higher than in

previously reported healthy older people the sample size of that study was small and results are

tentative. Evidence exists to support differences between men and women in fatigue frequency,

intensity and distress.

Little is currently known about physiologic factors associated with subjective fatigue in

people with COPD but results of previous studies indicate only a weak relationship between

fatigue and the amount of airflow obstruction measured by FEVl percent predicted supporting

the idea that spirometry alone may not capture the physiologic factors influencing subjective

fatigue.

To date, results of studies have shown that fatigue and dyspnea are closely related and

evidence suggests that dyspnea leads to fatigue in people with COPD. Although previous

research indicates a relationship between psychological factors such as anxiety and depressed

mood and fatigue and dyspnea it is yet unclear whether anxiety and depressed mood lead to or

are a result of the symptoms.

Currently there is evidence for negative relationships between subjective fatigue and

dyspnea and functional performance but it is yet unknown specifically how these symptoms

work to impact the performance of daily activities. And although people with COPD report

difficulties with sleep, to date no studies have examined the relationship between sleep quality

and fatigue levels in people with this illness.

 III. METHODOLOGY

A. Design

A crossectional, correlational design was used for this study. Variables studied included

subjective fatigue, dyspnea, functional performance, disease severity, anxiety, depressed mood

and sleep disturbance. Demographic variables included age, gender, educational level,

socioeconomic status, medications, employment history, height and weight, recent health

problems and how long participants have been diagnosed with lung disease. The study was

approved by the University of Illinois at Chicago Institutional Review Board (Appendix A).

B. Sample

A convenience sample of 130 people with COPD was recruited. An attempt was made to

obtain equal numbers of men and women for the study.

1. Selection criteria

Inclusion criteria were: 1. a diagnosis of moderate to severe chronic obstructive

pulmonary disease (FEV, less than 70% predicted); 2. age 45 years or older; 3. smoking

history of at least 10 pack years; 4. ability to read, understand and fill out forms. People with

arthritis, diabetes and hypertension met inclusion criteria if the disease was under control (only

mild symptoms present) by treatment. Exclusion criteria included; 1. presence of other major

diseases (cancer, congestive heart failure, stroke, kidney disease, liver failure) as determined by a

screening question; 2. exacerbation of COPD within the previous two months (exacerbation was

defined as an increase in respiratory symptoms and sputum that changed in color to yellow, green

23
 24

or brown); 3. history of asthma diagnosed by a physician; 4. participation in phase one of

pulmonary rehabilitation within the last 6 months; 5. history of Itmg transplant or lung reduction

surgery. People were not specifically asked about sleep apnea but those who reported a diagnosis

of sleep apnea were excluded from the study.

2. Recruitment strategy

Three strategies were used to recruit subjects. Volunteers were recruited from a larger

study on respiratory muscle strength currently being conducted by Dr. Larson, from pulmonary

rehabilitation programs and private practices. Potential participants from the larger study were

contacted by a letter from Dr. Larson (Appendix B) and asked to participate. Physicians' office

volunteers were sent a letter from their physician explaining the study and asking them if they

wished to participate. Interested volunteers called. Volunteers were also recruited from phase III

pulmonary rehabilitation programs. Informational sessions were held for people to describe the study

and fliers were made available at the rehabilitation center (Appendix C).

A total of227 recruitment letters were sent, 143 individuals inquired about the study and of

these 131 met inclusion criteria. Seventy people from the larger muscle strength study became

subjects in this study. Sixty two people were recruited by letter from pulmonologists. Six people

inquired about the study after a presentation to a group of COPD patients. One hundred thirty one

questiormaires were returned completed. Data of one subject were not included because stress (the

death of the spouse) might influence the responses.

C. Instrumentation

Table II summarizes the variables and measures for the study.

TABLE II

V.^RIABLES AND MEASURES

Variables Measures for the Variables

1. Subjective fatigue 1. a. Numerical Rating Scale

b. Profile of Mood States (POMS),

Fatigue-Inertia subscale

c. Fatigue Assessment Instrument

2. Dyspnea 2. a. Numerical Rating Scale

b. Chronic Respiratory Disease

Questionnaire, Dyspnea Scale

3. Functional performance 3. Functional Performance Inventory

4. Disease severity 4. Spirometry - Forced expiratory volume

in one second (FEVl) percent predicted

5. Anxiety 5. POMS, Tension-Anxiety subscale

6. Depressed mood 6. POMS, Depression-Dejection subscale

7. Sleep quality 7. Pittsburgh Sleep Quality Index

 1. Subjective fatigue

Three instruments were used to measure dimensions of usual subjective fatigue

experienced in the last week: a numerical rating scale developed by the researcher, the Profile of

Mood States, Fatigue - Inertia subscale(McNair, Lorr, & Droppleman. 1971, 1981, 1992) and the

Fatigue Assessment Instrument (FAI) (Schwartz, Jandorf, & Krupp, 1993). The 3-item

numerical rating scale was used to measure the subjective fatigue dimensions of intensity,

frequency and distress as described in the theory of unpleasant symptoms and the data from this

instrument were used to test the model because it included three dimensions of fatigue, not only

intensity. The Fatigue-Inertia subscale of the POMS broadly measures the intensity of subjective

fatigue and was used for comparing subjective fatigue experienced by people with COPD to

normative values for healthy older adult. This is a well established instrument and was used to

validate the numerical rating scale. The Fatigue Assessment Instrument provided a description of

specific characteristics of subjective fatigue such as the intensity of fatigue during certain times

of the day, consequences of fatigue and responsiveness to rest and sleep and was used for

characterizing the symptom in people with COPD.

a. Numerical rating scale

A five point numerical rating scale (Appendix D) ranging from 1 to 5 was used

to measure the frequency, intensity and distress of the usual subjective feeling of fatigue.

Respondents were asked to describe the feeling of tiredness they have experienced in the last

week. One week was chosen for the time frame because it is a long enough time frame for the

examination of usual fatigue yet is a short enough time frame for accurate recall.
 27

Respondents were asked how often they had felt tired in the past week (ranging from 1 =

"not at all" to 5 = "constantly"), how severe the feeling of tiredness had been (1 = "not at all" to 5

= "extremely") and how much it had distressed or bothered them (1 = "not at all" to 5 =

"extremely.") (Appendix D). The three dimension scores were summed for a total subjective

fatigue score with a potential range of 3-15.

Numerical rating scales are easier and faster to complete than visual analogue scales

(Aaronson, et al, 1999; Gift & Narsavage, 1998; Youngblut & Casper, 1993). Validity of the

five-point numerical rating scale for intensity, frequency and distress of fatigue was supported by

positive correlations with the Energy - Fatigue subscale of the SF-36 (r=.67, p<.01) (Gift &

Shepard, 1999) in a sample of people with COPD. Internal consistency reliability of the

numerical rating scale was examined in this study and construct validity of the 3-item scale were

explored by correlation with the POMS Fatigue/Inertia subscale and the Global Fatigue Severity

subscale of the Fatigue Assessment Instrument. The Cronbach's alpha for the 3-item NRS for

fatigue used in this study was .89 (Table III). The NRS for fatigue demonstrated convergent

validity with the FAI Global Fatigue subscale (r=.60, p<.001), and the POMS Fatigue/Inertia

subscale (r=.65, p<.001). It demonstrated divergent validit>- with the POMS Vigor subscale (r=-

.50. p<.001).

b. Profile of Mood States Fatigue -Inertia subscale

Fatigue was also measured by the Fatigue/Inertia subscale of the Profile of

Mood Scales (POMS) (McNair, Lorr, & Droppleman, 1971, 1981,1992) (Appendix D). The

total POMS measures mood disturbance and subscales of the POMS have been used separately
 28
as measures of affect. The total 65-item POMS (Appendix D) was administered, but only the

Fatigue-Inertia, Tension-Anxiety and Depression-Dejection subscales were used in this study.

The Tension-Anxiety and Depression-Dejection subscales are described later.

TABLE III

FATIGUE INSTRUMENTS

Instrument/Subscale/Potential Range # Items Cronbach's Alpha

Numerical Rating Scale Fatigue J .89

(3-15)
Frequency 1 N/A
Intensity 1 N/A
Distress 1 N/A

Profile of Mood States Fatigue/Inertia 7 .87

(0-28)

Fatigue Assessment Instrument 29 .93

(1-7)
Global Fatigue Severity 11 .92
Fatigue Consequences 3 .80
Responsiveness to Rest/Sleep 2 .87

Note: Raw items used for Cronbach's alpha.

 29

The Fatigue-Inertia subscale of the POMS is a 7-item scale that represents a mood of

weariness, low energy level and inertia. The subscale includes the descriptors worn out, fatigued,

exhausted, bushed, sluggish, weary and listless. Subjects are instructed to rate how they had been

feeling over the past week on a scale ranging from 1 = "not at all" to 4 = "extremely". The

subscale score is obtained by summing the responses with a potential range of 0 to 28. Normative

data are available on normal adult and geriatric people (mean age = 68) (Gibson, 1997; Kaye, et

al., 1988; Nyenhuis, Yamamoto, Luchetta, Terrien, & Parmentier, 1999).

The POMS Fatigue-Inertia subscale demonstrated high internal consistency reliability in

a sample of 505 adults age 65 and over (Kaye, et al., 1988) and reported Cronbach's alpha of .87

in a study of 479 older adults (Gibson, 1997). The total POMS had high intemal consistency in

studies of people with COPD (Lee, Graydon, & Ross, 1991).

Construct validity was supponed by a strong negative correlation between the POMS

Fatigue-Inertia subscale and the Chronic Respiratory Disease Questionnaire Fatigue subscale (r=-

.72) in 71 people with COPD (Larson, 1997) and by a strong positive correlation between the

POMS Fatigue-Inertia subscale and a visual analogue scale for fatigue (r=.80) in 43 people on

chronic hemodialysis (Brunier & Graydon, 1996). Also supportive of construct validity is the

fact that the POMS Fatigue-Inertia subscale has been used to validate many other measures of

subjective fatigue. The plan for this study was to use the POMS fatigue scale for validating the

numerical rating scale for subjective fatigue and for comparing levels of fatigue intensity

experienced by people with COPD to normative values in healthy older people. If the numerical
 30

rating scale had been found to lack reliability and validity the POMS Fatigue-Inertia subscale

would have been used to examine relationships among the variables instead of the numerical

rating scale. The Cronbach's alpha of the POMS Fatigue-Inertia subscale in this study was .87.

c. Fatigue Assessment Instrument

The Fatigue Assessment Instrument (FAI) (Appendix D) was used to

describe characteristics associated with subjective fatigue (Schwartz, Jandorf, & Krupp, 1993).

The FAI is a 29-item self-report instrument that assesses the factors (a)"GIobal Fatigue Severity"

(11 items), (b)"Situation Specificity" or sensitivity to circumstances such as heat, cold and stress

(6 items), (c)"Consequences of Fatigue" including loss of patience, motivation or ability to

concentrate( 3 items), and (d)"Responsiveness to Rest/Sleep" (2 items) in a 1 week period. It

uses a seven-point Likert scale that ranges from 1 = "completely disagree" to 7 = "completely

agree". The four factors were identified by factors analysis on 235 people with 7 different

diagnoses including a normal control group.

Internal consistency reliability of the FAI has been supported by Cronbach's alphas

ranging firom .70 -.92 and moderate test-retest reliability has been reported (r=.50 - .70) (Krupp,

LaRocca, Muir-Nash, & Steinberg, 1989; Schwartz, Coulthard-Morris, & Zeng, 1996; Schwartz,

Jandorf, & Krupp, 1993)in healthy people and people with diseases including lyme disease,

chronic fatigue syndrome, dysthymia, multiple sclerosis, lupus erythematosus and psychiatric

dysfunction. Content validity of the instrument was established by a factor analysis in 235 people

with varied diagnoses (Schwartz, Jandorf, & Krupp, 1993). Most items of this instrument address
 31

antecedents and consequences of subjective fatigue with one item concerning motivation and one

item concerning cognitive functioning. The instrument scoring includes a Global Fatigue

Severity score and subscale scores. The FAI elicits information regarding antecedents to fatigue

and situations or activities that might alter fatigue (Schwartz, Jandorf, & Krupp, 1993), making it

appropriate for this research.

2. Dvspnea

a. Chronic Respiratory Disease Questionnaire (CRQ)

The CRQ Dyspnea Scale was employed to measure dyspnea experienced

in the last week and was used as a measure of usual dyspnea in the path analysis. The CRQ is a

measure of respiratory symptoms and function that was developed for use with people with

COPD (Guyatt, Berman, Townsend, Pugsley, & Chambers, 1987). It is comprised of four scales,

dyspnea, fatigue, emotional fimction and mastery but only the Dyspnea Scale was used for this

study. The CRQ was chosen over the NRS for dyspnea for use in the path analysis because it is

based on individualized activities and thus it is independent of the total amount of activity the

person undertook in the last week.

The Dyspnea Scale was originally structured to reflect the intensity of dyspnea

experienced in the last two weeks while doing five common activities, but for this study a one

week period was used. The five activities were individualized to the respondent and were

chosen firom a list of activities (Appendix D). The respondent chose the five most important

activities that cause dyspnea. The same five activities identified by each individual were

incorporated into the mailed questionnaire (Appendix D). The response scale in the mailed
 32

questionnaire ranged from 1 = "extremely short of breath" to 7 = "not at all short of breath". The

score was obtained by summing the responses to the five items and dividing by 5 to obtain a

mean CRQ Dyspnea score. A higher score indicated less dyspnea.

Validity and reliability of the CRQ has been supported in many studies of people with

COPD (Lacasse, Wong, & Guyatt, 1998). Recent evidence, however, also supports its use as a

discriminative instrument, that is discriminating between groups of people with COPD in terms

of level of dyspnea at the same point in time (Hajiro, et al, 1998; Larson, Covey, Berry, Wirtz,

& Kim, 1993; Wijkstra, et al., 1994a). For instance, CRQ Dyspnea Scale demonstrated

approximately the same level of discriminatory power as the modified Medical Research Council

Dyspnea Scale, the Baseline Dyspnea Index, the Oxygen Cost Diagram and the Activity subscale

of the St. Georges Respiratory Questionnaire in 161 people with COPD (Hajiro, et al., 1998).

Recently, Williams and colleagues developed and tested a self-report form of the CRQ.

Reliability and validity of the instrument was supported in a study of 52 people with moderate to

severe COPD (Williams, Singh, Sewell, Guyatt, & Morgan, 2001).

b. Numerical rating scale

Usual dyspnea (firequency, intensity and distress) was measured using a

five-point numerical rating scale in the same manner as subjective fatigue (Appendix D).

Respondents were asked how often they have had shortness of breath in the past week (ranging

from "not at all" to "constantly", how severe it had been ("not at all" to "extremely")and how

much it had distressed or bothered them ("not at all" to "extremely"). The numerical rating scale

has been validated as a measure of present dyspnea in people with COPD (Gift & Narsavage,

1998). The NRS for dyspnea was used to compare fatgue and dyspnea in this study.
 3. Functional performance

Functional performance was measured with the Functional Performance Inventory

(FPI) (Leidy, 1999) (Appendix D). This is a 65-item instrument that measures performance of

day-to-day activities. Six subscales include Body Care, Maintaining the Household, Physical

Exercise, Recreation, Spiritual Activities and Social Interaction. Subjects respond to each item

by indicating how difficult it is for them to perform each activity that they do on a scale ranging

from 1 = no difficulty in doing the activity to 4 = activity not performed due to health reasons or

n/a if diey choose not to do the activity. A higher score reflects better functioning. Internal

consistency reliability was high for the total instrument (alpha = .96) and subscales (alpha range

.75 to .93, Table IV). Validity has been supported by correlations of the total score with the

Functional Status Questionnaire Activities Scale (r=.68), Duke Activity Status Index (r=.61),

Bronchitis-Emphysema Symptom Checklist (r=.59), Basic Need Satisfaction Inventory (r=.61),

Cantril's Ladder of Life Satisfaction (r=.63) in a sample of 154 people with COPD (Leidy,

1999),and correlations with the total Sickness Impact Profile (i=-.59), the Medical Outcomes

Study Short Form 36 Physical Functioning subscale (r=.69) and the American Thoracic Society-

Division of Lung Disease Breathlessness Scale (r=-.62)and the Physical Activity Scale for the

Elderly (r=.62) in 72 people with COPD (Larson, Kapella, Wirtz, Covey, & Berry, 1998). The

FPI also discriminates between people with FEVj greater than and lesser than 1 liter (Leidy,

1999; Leidy &Knebel, 1999).

 TABLE IV

ASSOCIATED VARIABLES INSTRUMENTS

Instrument/Subscale/Potential Range # Items Reliability

Chronic Respirator^' Disease 5 .84

Questionnaire Dvspnea Scale
( 1-7)

Numerical Ratina Scale Dyspnea 3 .81

(3-15)
Frequency 1 N/A
Intensity 1 N/A
Distress 1 N/A

Functional Performance Inventory Total 65 .92

(0-3)
Body care 9 .83
Maintaining the Household 21 .86
Physical E.\ercise 7 .82
Recreation 11 .79
Spiritual Activities 5 .85
Social Interaction 12 .78

Profile of Mood States 65 .90

Total mood disturbance
(-32 - 232)
(0-60) Depression 15 .91
(0-36) Tension 9 .78
(0-48) Anger 12 .86
(0-32) Vigor 8 .86
(0-28) Confusion 7 .67

Pittsburgh Sleep Quality Index Global 13 .72

(0-21 higher = more difficulty)
(0-3) Sleep Quality 1 "N/A
(0-3) Sleep Latency 2 N/A
(0-3) Sleep Duration 1 N/A
(0-3) Habitual Sleep Efficiency 2 N/A
(0-3) Sleep Disturbance 8 .63
(0-3) Use of Sleep Medication 1 N/A
(0-3) Daytime Dysfunction _2 N/A

Note; Raw items were used for the Cronbach's alpha.

 35

4. Disease severit\^

Airflow obstruction was used as an indicator of disease severity and measured by

spirometry. Spirometry was performed on each subject according to standard methods (Society,

19S9). The forced expiratoiy volume in one second (FEV,) percent predicted was used because

it takes into consideration the age, gender and height of the person. The normative values of

Morris and Lane (1981) (Morris & Lane, 1981) were utilized to calculate percent of predicted

noiinal values.

Subjects participadng in Dr. Larson's muscle strength study have annual spirometry

testing and these data were used for the proposed study. For these subjects spirometry was

performed within 1 year (either before or after) of completing the questionnaire. One would not

expect significant changes in FEV, to be observed in one year. Subjects recruited from

pulmonary rehabilitation programs and private practices had spirometry testing performed by the

investigator during a home visit using a portable spirometer (Medgraphics Breeze SC) that meets

ATS criteria. Spirometry equipment used in the home was zeroed and calibrated using a

calibration syringe before each subject was tested and all home tests were performed by the same

person.

5. Anxiety and depressed mood

Anxiety and depressed mood were measured by the Tension-Anxiety and the

Depression - Dejection (Appendix D) subscales of the Profile of Mood States. Independence of

the subscales has been demonstrated in several studies (Gibson, 1997; Kaye, et al., 1988;

McNair, Lorr, & Droppleman, 1971,1981,1992). VaUdity of the total instrument was
 36

supported by Nyenhuis and colleagues who demonstrated convergent and discriminant validity

of the POMS subscales in 170 adults over the age of 55 using a multitrait, multimethod approach

(Nyenliuis, Yamamoto, Luchetta, Terrien, & Parmentier, 1999). Appropriate and significant

correlations were observed between the POMS subscales and several other mood measures. And

the instrument discriminated between healthy adults and patients with mood disturbance

(Gibson, 1997).

The Tension-Anxiety subscale of the POMS consists of 9 items describing heightened

musculoskeletal tension (McNair, Lorr, & Droppleman, 1971,1981, 1992). Items include: tense,

shaky, on edge, panicky, relaxed, uneasy, restless, nervous, anxious. Internal consistency was

high (r=.89 -.95) in previous studies (Gibson, 1997; Kaye, et al., 1988; McNair, Lorr, &

Droppleman, 1971, 1981,1992; Norcross, Guadagnoli, &Prochaska, 1984). Construct validity

has been supported in normal adults, psychiatric outpatients and dental patients (McNair, Lorr, &

Droppleman, 1971, 1981, 1992). Kaye (1988) observed that a factor analysis yielded a similar

anxiet>' factor in 505 older adults as in younger adults. Significant correlations between POMS

Tension-Anxiety subscale and indicators of wellbeing were observed . Gibson reported a similar

result with factor analysis in 479 community-dwelling adults age 60 to 98 years. Concurrent

validity was supported by appropriate and significant correlations with the Speilberger State-

Trait Anxiety Inventory, the Irritability Depression Anxiety Scale and a visual analogue scale

(Gibson, 1997).

The Depression-Dejection subscale of the POMS consists of 15 items representing a

mood of depression accompanied by a sense of inadequacy (McNair, Lorr, & Droppleman, 1971,

1981,1992). Items include: unhappy, sorry for things done, sad, blue, hopeless, unworthy,

discouraged, lonely, miserable, gloomy, desperate, helpless, worthless, terrified, guilty. Internal
 37

consistency reliability has been high (r=.89 -.95) in several studies of adults and older people

(Gibson, 1997; Kaye, et al., 1988; McNair, Lorr, & Droppleman, 1971,1981,1992). Kaye

(1988) observed that a factor analysis yielded a similar depression factor in 505 adults age 65 and

older as in younger adults and significant correlations between POMS Depression subscale and

indicators of wellbeing.. Construct validity has been supported by demonstration of concurrent

and discriminant validity in adults, psychiatric outpatients and dental patients (McNair, Lorr, &

Droppleman, 1971, 1981, 1992) and adults over the age of 55(Gibson, 1997; Kaye, et al., 1988;

Nyenhuis, Yamamoto, Luchetta, Terrien, & Parmentier, 1999).

6. Sleep quality

Sleep quality was measured by the Pittsburgh Sleep Quality Index (Buysse,

Reynolds, Monk, Herman, & Kupfer, 1989) (Appendix D). This instrument measures subjective

sleep quality with 7 components: Sleep Quality, Sleep Latency, Sleep Duration, habitual Sleep

Efficiency, Sleep Disturbance, use of Sleep Medication and Daytime Dysfunction. It is a

questionnaire consisting of 24 items. Items are scored on a 0 to 3 scale with 0 = not during the

past month to 3 = three or more times a week. Scoring produces a Global Sleep Quality score

(achieved by summing the seven components) and seven component scores, with higher scores

indicating worse sleep quality. A Global Sleep Quality index score higher than 5 indicates poor

sleep quality and difficulties with sleep in at least 2 areas (Buysse et al., 1989). Cronbach's alpha

was reported to be overall .80 to .83 in healthy people and several disease populations (Buysse,

Reynolds, Monk, Berman, & Kupfer, 1989; Carpenter & Andrykowski, 1998) Validity was

supported by correlations with known groups and sensitivity to diagnose was 89.6% with

specificity of 86.5% to detect good from poor sleepers (Buysse, Reynolds, MorJc, Berman, &
 38

Kupfer, 1989). Additionally, the PSQI scores were correlated with measures of sleep quality and

sleep problems in several clinical populations (Carpenter & Andrykowski, 1998). Normative data

are available for several age groups including young adults, middle aged (mean = 60 years old)

and adults over the age of SO (Buysse, Reynolds, Monk, Berman, & Kupfer, 1989; Buysse, et

al., 1991).

7. Demographics

Demographic data (Appendix D) were collected including age, gender,

educational and socioeconomic level (Hollingshead, 1975), employment, recent health problems

and current medications.

D. Procedures

The investigator phoned each potential participant, described the study and acquired

phone consent. A script was used for the initial phone contact (Appendix F). Potential

participants were given a full explanation of the study and the written consent was explained.

People who agreed to participate were screened using inclusion/exclusion criteria (Appendix G).

The investigator then administered the first part of the Chronic Respiratory Disease

Questionnaire Dyspnea Scale to elicit the five activities during which the person experiences

dyspnea during daily activities. The five activities were written into the CRQ section of the

printed questionnaire that was later mailed to each participant.

Appointments were set during the initial phone call for those requiring spirometry testing.

All subjects signed a written consent prior to spirometry testing (Appendix H). Subjects who
 39

were currently enrolled in Dr. Larson's muscle strength study signed a consent that was included

as part of their questionnaire packet.

Volunteers were given or mailed a packet containing a letter/instructions, questionnaires

and a self-addressed stamped envelope for retum of the completed questionnaires. Participants

were asked to complete the questionnaire in the morning and to indicate the time of day it was

completed. They were asked to retum the packet by mail within one week.

Confidentiality of data was assured by assigning codes to each respondent. All data

collection forms were coded and the list of names and codes were stored separately. Forms with

respondents' names such as consents were kept in a file cabinet behind two sets of locked doors.

E. Data Analyses

Data were analyzed with descriptive statistics and bivariate relationships were examined

with Pearson's correlations using SPSS 11 software (SPSS, 2003). Outliers were identified by

visual inspection of plots and assessed for correct data entry and technical problems. Reliability

coefficients were calculated on all variables included in the path model. In order to prepare the

data for analysis, individual missing items were examined and assessed for random or

systematic qualities. There were 1.6% missing values on the numerical rating scales. The POMS

had less than 3.9 % missing data on individual items. On the FAI only one item (2.3%) had more

than 1.6% missing. The PSQI had no more than 2.3% missing on any item. And the FPI had no

more than 3.9% missing on any item except for items on the Work/School subscale (which was

not used in analysis) and 1 item in the Recreation subscale which had 7.8% missing. After some

discussion, the missing data on this item were replaced with 0 as the question asked about
 40

hobbies and it seemed that people left it blank if they didn't have any hobbies. Six percent of

respondents could identify 4 or less activities that caused them shortness of breath on the CRQ.

On the POMS, FAI, FPI and the CRQ Dyspnea Scale missing items were replaced with the mean

value of other items on the same subscale. Missing items on the numerical rating scales were not

replaced.

Simultaneous relationships among variables were tested by path analysis and structural

equation modeling (SEM) using AMOS 4 software (Smallwaters, 2003). The sample size was

130 allowing 19 subjects per variable in the path analysis (Stevens, 1996). Statistical assumptions

of normality, linearity and homoscedasticity were tested using histograms, probability plots and

residual scatterplots and necessary assumptions were met. The fit of the hypothesized model was

tested using maximum likelihood estimation. The following fit indexes were used to assess the fit

of the hypothesized model: chi-square; the normed fit index (NFI); the incremental fit index (IFI)

and the comparable fit index (CFI) (Hoyle, 1995). The structural model was refined until the

theoretically based model with the best fit was determined.

 IV. RESULTS

An overview of sample characteristics is presented. This is followed by descriptive

statistics and bivariate correlations for independent and dependent variables. Finally the path

analysis is presented.

A. Description of the Sample

1. Sample characteristics: Background

The study sample consisted of 130 people with COPD, 68 (52.3%) men and 62 (47.7%)

women. The mean age was 69.1 (SD =6.3). Table V provides funher information about the

demographic characteristics of the subjects.

2. Sample characteristics: disease-related

Subjects demonstrated a wide range of disease severity with a mean (SD) FEV, %

predicted of 45 (18.1) (range 13-118). The mean BMI was 26.8(5.0) (range 16-41). Subjects

reported a wide range (0-8) of colds or respiratory infections in the previous year with an average

of 1.6 in the previous year. There were no differences between men and women in disease

severity, age or number of RTFs in the last year (Table VI).

Most subjects were using inhaled bronchodilators (n=105, 82%) and many were using

inhaled steroids (n=81, 63%). Twenty percent (n=26) were using oral bronchodilators and 14%

(n=19) were using oral steroids on a daily basis. There was no difference between men and

women in whether they used bronchodilators and steroids.

41
 TABLE V

SAMPLE CHAR.ACTERISTICS ^

Variables Number Percent

Race
White 125 96
Nonwhite 5 4

Education
Grade school or less 3 4
High school 50 39
College 70 53
Graduate 5 4

Employment
Fulltime 15 12.0
Retired 77 58.6
Housewife 7 5.5
Not working due to illness 6 4.7
Part time job 4 3.1
Retired, but working part time 15 11.7
Housewife but with a part time job 2 1.6
Not working due to another reason 4 3.1

Medications
Inhaled bronchodilators 106 82.0
Oral bronchodilators 26 20.3
Inhaled steroids 81 63.3
Oral steroids 19 14.1

= n=130.
 43

TABLE VI

SAMPLE CR/^RACTERISTICS: DISEASE-RELATED

Men (n=68) Women (n=62)

Variable M (SD) M(SD)

Age 69.5 (5.8) 68.7 (6.7)

FEV, % predicted 44.5 (17.9) 46.1 (18.4)

Number of colds in the last year L5 (1.6) L8 (1.7)

BMI 27.7 (4.6) 25.9 (5.3)

B. Comparison of Fatigue and Dvspnea Dimensions

1. Overall fatigue and dvspnea

The mean scores on the NRS fatigue, the POMS Fatigue/Inertia scale and the FAI

Global Fatigue score indicated that the subjects experienced a moderate amount of subjective

fatigue in the last week. Summary statistics for the fatigue and dyspnea instruments are presented

in Table VII. The mean scores on the NRS Dyspnea and the CRQ Dyspnea Scale indicated that

subjects experienced a moderate amount of dyspnea in the last week. There was a significant

correlation between the overall numerical rating score (sum of frequency, intensity and distress)

for fatigue and dyspnea (r=0.74, p<.001). A t-test for paired samples was performed to determine

if there was a significant difference between the overall fatigue score and the overall dyspnea
 44

score. The mean score for the overall NRS dyspnea was significantly higher than the mean score

for the overall NRS fatigue (p<.001).

TABLE VII

DESCRIPTIVE STATISTICS; F.ATIGUE AND DYSPNEA

Men Women Total

I nstrum ent/S ubscale/Potential Range M(SD) M (SD) M(SD)

N=68 N=62 N=130

Numerical Ranng Scale Fatigue 8.5 (2.6) 9.4 (2.6) 8.9 (2.6)
(total.3-15; subscales, 1-5)
Frequency 3.2 (0.9) 3.4 (0.8) 3.3 (0.9)+
Intensity 2.8 (0.9) 3.2 (0.9)* 3.0 (0.9)
Distress 2.5(1.2) 2.7(1.0) 2.6(1.1)'^

Profile of Mood States Fatigue/Inertia 11.5 (6.4) 11.6(6.5) 11.6 (6.4)

(0-28)

Fatigue Assessment Instrument N/A N/A N/A

(1-7)
Global Fatigue Severity' 4.4(1.3) 4.4(1.6) 4.3(1.5)
Situation Specific 4.0(1.2) 4.5(1.4)* 4.3(1.3)
Fatigue Consequences 4.4(1.4) 4.7(1.5) 4.6(1.5)
Responsiveness to Rest/Sleep 5.4(1.7) 5.1(1.8) 5.2(1.8)

Chronic Respiratory Disease 3.1 (1.1) 2.9(1.1) 3.0(1.1)

Questionnaire Dyspnea Scale
( 1-7)

Numerical Rating Scale Dyspnea 9.2 (2.3) 9.6(2.1) 9.4 (2.2)**

(total, 3-15: subscales, 1-5)
Frequency 3.5 (0.8) 3.6 (0.7) 3.5 (0.7)**
Intensity 3.1 (0.8) 3.2 (0.7) 3.1 (0.8)**
Distress 2.7(1.1) 2.8(1.0) 2.7(1.0)**^

* p<.05, men vs. women.

**p<.001, dyspnea vs. fatigue.
-r p<.001, frequency vs. intensity and distress.
p<.001, distress vs frequency and intensity.
 45

2. Dimensions of fatigue and dvspnea

The frequency, intensity and distress of dyspnea were significantly greater than the

frequency, intensit}' and distress of fatigue (p<.001). Frequency was significantly greater than

intensity and distress in both symptoms. Distress was significantly lower than frequency and

intensity in both fatigue and dyspnea. There was no difference between men and women in the

frequency of fatigue and dyspnea or the distress associated with these symptoms but women

reported more intense fatigue than men (p=.02). The bivariate relationships between fatigue and

dyspnea dimensions are presented in Tables VIII and IX. Distributions of NRS fatigue and dyspnea

dimensions axe presented in Appendix I.

Correlations are presented for fatigue and illness-related variables (Table X). Significant

correlations were observed between fatigue dimensions and age. Significant correlations were also

observed between fatigue dimensions and the number of respiratory- tract infections in the last year.

C. Characteristics of Fatigue

Over 70% of respondents reported on the Fatigue Assessment Instrument that they are less

motivated when they are fatigued (75.3%), sleep lessens their fatigue (75.2%) and rest lessens their

fatigue (72.9%). Over 60% of respondents agreed that the fatigue they now experience is different

in quality or intensity than the fatigue they experienced before developing this condition (69.8%)

and that cool temperatures lessen their fatigue (68.2%). Thirty-two percent agreed that fatigue is

their most disabling symptom. Sixty-three percent of respondents agreed that fatigue is one of their

3 most disabling symptoms.

 46

TABLE VIII

PEARSON CORRELATIONS BETWEEN FATIGUE DIMENSIONS

FATIGUE

Variable Frequency Intensity

Frequency
Intensit>' .80**
Distress .69** 51 **

TABLE IX

PEARSON CORRELATIONS BETWEEN DYSPNEA DIMENSIONS

DYSPNE.A.

Variable Frequency Intensity

Frequency
Intensity .63**
Distress .53** .63**

**p = 0.000 (2-taiIed).

n = 128. Note; missing CRQ data on 2 subjects.

TABLE X

PEARSON CORRELATIONS BETWEEN NRS FATIGUE

DIMENSIONS AND ILLNESS-RELATED VARIABLES

Frequency Intensity Distress Total

Age' 0.17 0.20* 0.23** 0.22*

FEV, %pred'' -0.07 -0.03 0.02 -0.02

Number ofRTI's 0.22* 0.20* 0.31** 0.27**

in the last year'

* p<.05.
** p<.OL
*** p<.001.
 47

Seventy percent of respondents reported their fatigue was not worse in the morning (51.2%

agreed that fatigue was worse in the aftemoon). Si.xty-nine percent of respondents reported that

fatigue did not predate other symptoms of their condition. Men agreed that exercise brought on

fatigue whereas women disagreed (p=.05). Men disagreed that stress or depression brought on

fatigue but women were neutral (p <.01). There were wide variations in responses to questions

about what brought on their fatigue, suggesting that there may be many causes.

D. Sleep Quality and Affective States

Descriptive statistics for variables associated with fatigue are presented in Table XI and

Pearson correlations between the key variables are presented in Table XII. The mean (SD) score for

the PSQI Global Sleep Quality was 6.89 (3.7) indicating that respondents had quite a bit of

difficulty with sleep. Scores for women 7.7 (4.1) were significantly greater (p< .05) than for men

6.2 (3.1). Stepwise regression was performed to assess the relationship of depressed mood, BMI,

airflow obstruction, dyspnea, age, number of chest colds and anxiety to sleep quality in women.

Anxiety and age were the most significant determinants of sleep quality and accounted for 25% of

the variability. Tlie stepwise regression was repeated in men. Depressed mood was the only

significant determinant of sleep quality in men and accounted for 10% of the variability.

Correlations between subscales of the PSQI and dyspnea, fatigue and functional performance are

presented in Appendix J. Mean (SD) scores for the POMS Tension 9.85 (6.4)and Depression 9.9

(9.5) subscales indicate that respondents had higher than normal levels of anxiety and depressed

mood. The POMS results are presented in Table VIII. No differences were observed between men

and women.
 48

TABLE XI

DESCRIPTIVE STATISTICS: ASSOCIATED VARIABLES

Men Women Total

Instrument/Subscale/Potential Range M (SD) M (SD) M (SD)

Functional Performance Inventory Total 1.9 (.47) 1.8 (.47) 1.9 (.47)
/ A -JN
Body Care 2.7 (.38) 2.7 (.38) 2.7 (.38)
Maintaining the Household 1.8 (.65) 1.8 (.57) 1.8 (.61)
Physical Exercise 1.1 (.62) 1.0 (.52) 1.0 (.58)
Recreation 1.9 (.58) 1.8 (.55) 1.8 (.56)
Spiritual .Activities 1.7(1.0) 1.7 (1.0) 1.7(1.0)
Social Interaction 2.0 (.53) 1.7 (.66)* 1.9 (.61)

Profile of Mood States 27.7 (30.8) 30.1(30.6) 28.8 (30.6)

Total mood disturbance (-32 to 232)
(0-60) Depression 9.2 (9.5) 10.7 (9.5) 9.9 (9.5)
(0-36) Tension 9.3 (6.0) 10.5 (6.9) 9.8 (6.4)
(0-48) Anger 7.0 (6.1) 6.3 (5.7) 6.7 (5.9)
(0-32) Vigor 16.1 (5.8) 14.7 (5.0) 15.4 (5.5)
(0-28) Confiision 6.8 (4.3) 5.7 (3.9) 6.3 (4.1)

Pittsburgh Sleep Quality Index Global 6.2(3.1) 7.7(4.1)* 6.9 (3.7)

( 0-21 higher = more difficulty)
(0-3) Sleep Quality .88 (.71) l.I (.71) .99 (.71)
(0-3) Sleep Latency .89 (.82) 1.2 (1.0) 1.00 (.94)
(0-3) Sleep Duration .88 (.83) 1.0 (.84) .93 (.83)
(0-3) Habitual Sleep Efficiency .75(1.1) 1.1 (1.2) .91 (1.2)
(0-3) Use of Sleep Medication .34 (.93) .7 (LI)* .53 (1.0)
(0-3) Daytime Dysfunction 1.0 (.66) 1.2 (.72) 1.00 (.69)

* p<.05. men vs. women.

 Table XIT

PEARSON CORRELATIONS: KEY VARIABLES

Age Gender rnv, pp DMI CRQ NRS POMS NRS Anxiety Depressed RTI Sleep
Dyspnea Dyspnea Fatigue I'aligue Mood Quality

Age 1.00

Gender -0.06 1.00

A i r f l o w Obslniction ( F H V , pp) 0.09 0.05 1.00

Body Mass Index ( B M I ) 0.00 -0.19* 0.09 1.00

-0.23* -0.08 0.20 0.12 1.00

C R Q Dyspnea

N R S Dyspnea 0.2^1 0.07 -0.2'l* -0.13 -0.69* 1.00

0.20* 0.01 0.03 0.01 -0.47* 0.59*** 1.00

P O M S Fatigue

0.22* 0.16 -0.04 -0.03 -0.50*** 0.74* 0.66*'* 1.00

N R S Fatigue

0.13 0.09 -0.20* -0.20* -0.28** 0.46* ' 0.61 0.49* 1.00
Anxiety

0.20* 0.07 -0.05 -0.14 -0.20* 0.38** 0.57*** 0.45'^ 0.80' 1.00
Depressed M o o d

0.02 0.09 -0.00 -0.02 -0.19 0.24 0.16 0.27' 0.21' 0.07 1.00
Respiratory Tract Infection

0.12 0.21* -0.03 0.03 -0.23* 0.28* 0.44*< 0.40* 0.42' 0.34* 0.2 ! 1.00
Sleep Quality

-0.24** -0.09 0.30*** 0.18 0.48* -0.59*** -0.46' -0.52' -0.43' -0.3P'* -0.20* -0.32**
Functional Performance

* p<.05.
** p<.OL
p<.OOL 4^
VO
 50

E. Factors Predicting Subjective Fatigue

Stepwise multiple regression was performed to assess the relationship of symptom and

illness-related variables to subjective fatigue as measured by NRS fatigue. Independent variables

included age, gender, BMI, number of respiratory tract infections or colds in the past year, CRQ

dyspnea. FEV,% predicted, anxiety, depressed mood and sleep quality. The final model (R- = .43. F

(3, 96) = 24.1, p <.001) revealed that the most significant determinants of subjective fatigue were

dyspnea, depressed mood and sleep quality. The model explained forty-three percent of the

variation in subjective fatigue. Results of the regression are presented in Table XIII.

Stepwise regression was performed to see if the model remained the same when men and

women were examined separately. The most significant predictors of fatigue in men were dyspnea

and depressed mood (R-=.39, F(2,51)= 16.5,p<.001) and in women were sleep quality, dyspnea

and depressed mood (R-= 44,F(3,43)=11.4,p<.001).

F. Functional Performance

The mean(SD) score for the total FPI was 1.9 (.47) indicating a medium level of functional

performance. Summary statistics for the FPI are presented in Table VIII. A MANOVA was

performed and demonstrated a significant difference between men and women in social interaction

(F (1, 128) = 7.61, p = .007) with women reporting more difficulty with social interaction than

men. Sixteen subjects (12%) had a mean score of 0 on the Spiritual Activities subscale. Twelve of

these subjects indicated that they chose not to engage in spiritual activities. Correlations between

subscales of the FPI and dyspnea, fatigue and sleep difficulty are presented in Appendix K.

Stepwise multiple regression was performed to assess the relationship of symptom and illness-

related variables to functional performance. Independent variables included age, gender, BMI, NRS
 51

TABLE XIII

FACTORS PREDICTIMG NRS FATIGUE: MULTIPLE STEPWISE REGRESSION =

Final step Standardized beta (P) t F (3,96)

predictor variables coefficients''

CRQ Dyspnea -0.42 -5.35*** 24.35***

Depression 0.30 3.67***

Global Sleep Qualit>- 0.23 2.87**

R = .65
R== .43
Adjusted R-= .41

= Independent variables: age, gender, BMI, FEV1% pred., CRQ dyspnea, anxiety, depression, sleep quality',
number of respiratory infections or colds in the last year.

" Estimates of final model.

* p < .05.
** p < .OL
*** p < .001.

fatigue, CRQ dyspnea, FEV,% predicted, anxiety, depressed mood and sleep quality. The final

model (R- = .43, F (4, 94) = 17.5, p <.001) revealed that the most significant determinants of

f unctional performance were NRS fatigue, airflow obstruction, dyspnea and BMI. Together, these

variables explained 43% of the variation in functional performance. Results of the regression are

presented in Table XIV.

 52

TABLE XIV

FACTORS PREDICTING FUNCTIONAL

PERFORMANCE: MULTIPLE STEPWISE REGRESSION ^

Final step Standardized t F (4.94)

predictor variable beta
coefficient ((3)

NRS Fatigue -0.46 -5.08*** 17.49***

FEV, %pred 0.24 2.96***

Dyspnea 0.19 2.06**

BMl 0.16 2.05*

R = .65
R== .43
Adjusted R-= .40

' Independent variables: age, gender, FEV, % predicted, NRS fatigue, CRQ dyspnea, anxiety, depression,
sleep quality.

'' Estimates of the final model.

* p <.05.
** p <.01.
*** p < .001.

G. Subjective Fatigue: Final Path Model

Path analysis was performed to assess the simultaneous relationships among variables,

starting with the hypothesized model. The hypothesized model was a good fit whether the

numerical rating fatigue scale or the POMS Fatigue/Inertia scale was used. Because BMI was a

significant predictor of functional performance in regression it was added to the model but was

removed during refinement. The model was refined until the theoretically based model with the

best fit was found.

 53

Multicollinearity can be a problem in path analysis if the independent variables demonstrate

high correlations. Levv'is-Beck recommended that to test for multicollinearity each independent

variable be regressed on all of the others to test for a high linear dependence among the

independent variables (Lewis-Beck, 1980). Therefore, each independent variable in this study was

regressed on all of the others. No R- above .70 was observed.

Results of the analysis indicated a fit model with a Chi-square of 9.0 with 9 degrees of

freedom and a probability level of .421. The normed fit index (NFI), the incremental fit index (IFl)

and the comparable fit index (CFI) were all above .99. The final path model is depicted in Figure 2.

Results of the path analysis are presented in Tables XV and XVI. All of the paths were supported

by the data.

To summarize, results indicate that 1. as depressed mood and dyspnea increased and sleep

quality decreased, the level of fatigue increased. 2. fatigue, dyspnea, airflow obstruction and

anxiety directly influenced the performance of daily activities. A total of 42% of the variation in

fatigue was explained by dyspnea, depressed mood and sleep quality.

 54

AIRFLOW
OBSTRUCTION

DYSPNEA
.24
-.20

-.28
.39
-.18 FUNCTIONAL
-.05 ANXIETY PERFORMANCE

-.30
.43 FATIGUE
.80 .24
SLEEP
QUALITY

.30
DEPRESSED
MOOD

Figure 2. Final path model

 55

TABLE XV

PATH ANALYSIS: SUBJECTIVE FATIGUE

AND FUNCTIONAL PERFORMANCE

Subjective Fatigue'" Functional Performance^

Variable Direct Indirect Total Direct Indirect Total

Airflow Obstruction" 0.000 0.000 0.000 0.2] 1** 0.000 0.211

An.xiety' 0.000 0.211** 0.211 -0.180 -0.131** -0.311

Depressed Mood= 0.300*** 0.000 0.300 0.000 -0.090** -0.090

Dyspnea'' -0.387*** 0.000 -0.387 0.241** 0.116*** 0.357

Sleep Quality^ 0.239** 0.000 0.239 0.000 -0.072 -0.072

Subjective Fatigue -0.301** 0.000 -0.301

^ Effects are standardized.

'' Numerical Rating Scale
' Functional Performance Inventory
' FEVl % predicted
" Profile of Mood States
CRQ Dyspnea Scale
^ Pittsburgh Sleep Quality Index

* p <.05.
** p <.0I.
*** p < .001.
 TABLE XVI

SUMMARY OF MULTIPLE REGRESSION IN THE FINAL PATH MODEL

Dependent Variable Independent Variable Path Coefficient

L Dyspnea AnxietS' -0.28**

R-'=.08

Sleep Quality Anxiet>' 0.43*^

R= = .18

3. Subjective Fatigue Dyspnea -0.39***

R^ = .42 Depressed Mood 0.30***
Sleep Quality 0.24**

4. Functional Performance Subjective Fatigue -0.30**

R= = .40 Airflow Obstruction 0.21**
Dyspnea 0.24**
Anxiety -0.18*

* p < .05.
** p <.01.
***p <.001.
 V. DISCUSSION

This is the first study to examine fatigue and its antecedents and consequences in a large

group of people with COPD. As expected, subjects reported higher levels of fatigue than did

healthy subjects of a similar age in other studies. Almost one-third of the subjects reported that

fatigue was their most disabling symptom. The level of dyspnea during activities, depressed mood

and sleep quality- directly influenced fatigue. Of the study variables, fatigue had the greatest direct

influence and dyspnea had the greatest total influence on the performance of daily activities. This

chapter includes discussion of the findings, limitations of the study, and suggestions for future

research.

A. Discussion of the Findings

1. Characteristics of subjective fatigue

Fatigue was a common and major problem for the subjects in this study. Subjects

reported that fatigue was one of their three most disabling symptoms and in many cases their most

disabling symptom. These results are consistent with the findings of ICinsman and associates

(1983), Janson-Bjerklie and colleagues (1986), and Gift and Shepard (1999): that fatigue is the

second most prevalent symptom in people with COPD.

Since just about everyone experiences fatigue periodically it is difficult to know whether

subjects in the study were more fatigued than healthy subjects in other studies. In this study fatigue

intensitj', which was measured with the POMS Fatigue/Inertia scale, was greater tlian previously

reported for older healthy adults and similar to subjects with other chronic illnesses such as

rheumatoid arthritis, lupus erythematosus, multiple sclerosis and subjects with psychiatric

illness (Table XVII). Previous researchers (Kaye, et al, 1988; Nyenhuis, Yamamoto, Luchetta,

Terrien, & Parmentier, 1999) reported POMS Fatigue/Inertia mean scores of 5.0 to 6.9 in healthy

57
 58

illness (Table XVII). Previous researchers (Kaye, et al., 1988; Nyenhuis, Yamamoto, Luchetta,

Terrien, & Parmentier. 1999) reported POMS Fatigue/Inertia mean scores of 5.0 to 6.9 in healthy

older adults. The difference between the fatigue intensity observed in subjects in this study and

that observed in healthy subjects could be clinically significant.

Results of the current study are consistent with studies that found higher POMS

Fatigue/Inertia scores in people with COPD and other chronic illnesses. In previous studies of

smokers and subjects with COPD, researchers reported scores of 9.0 to 10.0 (Norcross,

Guadagnoli, & Prochaska, 1984; Prigatano, Wright, & Levin, 1984). Fatigue intensity as obser\'ed

on the Fatigue Assessment Instrument Global Fatigue subscale in this study was similar to previous

repons of fatigue intensity in subjects with multiple sclerosis and lupus erythematosus (Table

XVIII). Belza et al. observed similar levels of fatigue on the Multidimensional Assessment of

Fatigue scale in 133 subjects with rheumatoid arthritis. Krupp et al. reported similar fatigue levels

in people with systemic lupus erythematosus and multiple sclerosis (Krupp, LaRocca, Muir-Nash,

& Steinberg, 1989b). McNair and colleagues also observed moderate fatigue levels in male and

female psychiatric outpatients using the POMS Fatigue/Inertia subscale (McNair et al., 1971, 1981,

1992 1992).

There were minor differences between men and women for fatigue, but the difference was

small and probably not clinically important. Using a numerical rating scale Gift and Shepard

observed higher levels of fatigue intensity, frequency, and distress in women with severe COPD

than in men with severe COPD (Gift & Shepard, 1999). Subjects in the current study had less

severe COPD, so it is possible that differences between men and women become evident as the

disease progresses.

Fatigue frequency and intensity were closely associated. One explanation for this might be

that subjects cannot differentiate between frequency and intensity of fatigue. Because of its nature.
 TABLE XVII
COMPARISON OF POMS SCORES WITH NORMS

POMS ADULT OLDER PEOPLE GEIUATUIC SAMPLE ADULT PSYCHIATRIC ADULTS WITH SMOKIZRS
NORMS N=505, mean age N= 170, mean age = 68 OUTPATIENTS COPD^ N=941 N=298
(McNiiir, Loi r, & = 83.4 (Nyenluiis, Yamamoto, (Prigatano, Wright, mean age = 39.3
Droppleman, 1971, (Kaye, et al., 1988) Luchetta, Terrien, & (McNair, Lorr, & & Levin, 1984) (Norcross,
1981,1992 1992) Parmentier, 1999) Droppleman, 1971, 1981, Giiadagnoli &
(pp23) 1992 1992) (P.20) Procliaska, 1984)

Men Women Men & Women Men Women Men Women Men Women Men & Women
M(SD) M(SD) M(SD) M(SD) M(SD) M(SD) M(SD) M(SD) M(SD) M(SD)

FATIGUE 7.0 (5.7) 8.4 (6.8) 6.70 (6.4) 5.0 (4.9) 6.9 (5.6) 6.89 (6.26) 7.01(7.8) 10 9.0(7.0)

DEPRIiSSED 8.3(8.7) 10.2(10.4) 7.97 (8.9) 4.3 (5.4) 6.9 (7.5) 8.97(11.6) 8.10(12.9) 9 9.8 (10.8)
MOOD

TENSION 9.2 (8.3) 9.7(9.3) 7.68 (6.2) 4.6 (3.7) 6.9 (5.9) 10.13 (7.42) 8.82 (8.5) 12 11.2 (7.3)
 TABLE XVm

COMPARISON FAI SCORCS: PREVIOUS STUDY WITH CURRENT STUDY

CURRENT STUDY- HEALTHY CHRONIC DISEASES" MULTIPLE LUPUS

COPD ADULTS SCLEROSIS ERYTHMATOSUS
N=I30 N=37 N=I98 N=40 N=47

M (SD) M (SD) M (SD) M(SD) M(SD)

GLOBAL FATIGUE 4.3(1.5) 2.5(1.2) 5.0(1.4) 5.5(1.2) 4.2(1.6)

SEVERITY

SITUATION 4.3 (L3) 4.1 (K4) 4.0 (L4) 5.0(1.1) 4.2 (1.2)
SPECIFIC

RESPONSIVE TO REST 5.2(1.8) 5.5(1.1) 4.9(1.9) 5.6(1.6) 5.1 (1.8)

OR SLEEP

PSYCHOLOGICAL 4.6(1.5) 5.0(1.5) 5.5(1.4) 5.3(1.5) 5,3(1.6)

CONSEQUENCES

" (Schwartz el al. 1993)

chronic diseases include l^'nie disease, chronic fatigue, pos" e chronic fatigue, syslcmic lupus erythematosus, multiple sclerosis, dysthymia.

o,
o
fatigue may be more constant and pervasive, whereas dyspnea is episodic and associated with

activity' in COPD.

Characteristics of fatigue in this group of subjects with COPD were similar in some ways to

people with other chronic illnesses but different in other ways. In COPD and other chronic

illnesses fatigue was associated with other symptoms and functional performance. However,

instead of being associated with neurological symptoms, as in MS, or with pain, as in rheumatoid

arthritis, fatigue in COPD was closely associated with dyspnea during activity. The fatigue of

COPD was similar to that experienced by people with MS and rheumatoid arthritis in that cool

temperatures lessened fatigue, it was experienced more in the afternoon than in the morning, and it

was associated with other disease symptoms and mood, especially depressed mood (Belza, 1995;

Hart, 1978; Huyser, et al., 1998; Lou, Keams, Oken, Sexton, & Nutt, 2001; Petajan, et al., 1996;

Schwartz, Coulthard-Morris, & Zeng, 1996).

Fatigue in this group of subjects with COPD appears to be tliat of exertion. Unlike subjects

with MS, who reported that heat brought on their fatigue (Freal, Kraft, & Coryell, 1984), subjects

in the current study reported that work brought on their fatigue. People with COPD may tire more

easily during work-related activity because they decrease their activity level to avoid dyspnea and

consequently become deconditioned.

Several other differences in fatigue v/ere observed between COPD and the other chronic

illnesses. People with MS responded that fatigue made other symptoms worse, but subjects with

COPD were neutral on whether fatigue made other symptoms worse. It is not surprising that people

with COPD would respond in this manner because in COPD, dyspnea probably has the greatest

effect on other symptoms, more than fatigue. Interventions that incorporate pacing of activities in

COPD may help ameliorate both the dyspnea and fatigue.

 62

People with systemic lupus erythematosus reported that fatigue predated other symptoms,

but subjects with COPD and MS disagreed that fatigue predated other symptoms. One explanation

for this variation is that in COPD dyspnea is the first symptom that is noticed, not fatigue. Fatigue

may become more prevalent as the disease progresses and as dyspnea experienced with activities

increases. Lastly, people with lupus erythematosus reported that fatigue was their most disabling

symptom but those with COPD and MS disagreed that fatigue was their most disabling symptom.

This response was also not unexpected. Results of this study support the idea that dyspnea has a

greater total effect on the performance of daily activities in COPD than fatigue has.

2. Factors directly related to subiective fatigue

a. Dvspnea

Dyspnea had the largest direct effect on fatigue. This is consistent with

previous studies of smaller samples. In a path analysis. Moody and colleagues observed a direct

influence of dyspnea severity on fatigue (beta=.47) in 45 people with COPD (Moody, McCormick,

& Williams, 1990). Gift and Shepard reported that dyspnea was a significant predictor of fatigue

measured two ways, using the SF36 Energy/Fatigue subscale (beta=.51) and a lack of energy

question on a numerical rating scale (beta = .20) (Gift & Shepard, 1999). Woo (2000a) reported

that dyspnea explained 26% of the variability in fatigue in a sample of 39 people with COPD.

People with COPD who experience dyspnea during daily activities may become fatigued as their

problems with dyspnea increase. Interventions that help people manage dyspnea during these daily

activities may help control fatigue levels.

b. Sleep quality

Subjects in this study reported low sleep quality compared to healthy adults

over the age of 50 (Buysse et al., 1989; Buysse et al., 1991; Carpenter & Andrykowski, 1998).
Buysse and colleagues (1991) found that 68% of healthy older subjects had PQSI global scores in

the range of "good" sleepers (less than or equal to a score of 5). In the present study only 41% of

the respondents would be considered "good" sleepers.

The finding of low sleep quality is consistent with previous findings in people with COPD

Kinsman et al. found that nearly 53% of subjects with COPD reported a high frequency of sleep

difficulties (Kinsman, et al., 1983). Traver (1988) observed that sleep difficulty was one of the

most frequently mentioned symptoms in people with COPD. Researchers reported significant

differences between subjects with COPD and healthy controls for disorders of initiating and

maintaining sleep and excessive daytime sleepiness (Klink & Quan, 1991). Also, responses

concerning sleep on the Sickness Impact Profile were high across studies of people with COPD

(Prigatano, Wright, & Levin, 1984; Traver, 1988; Jones, Baveystock, & Littlejohns, 1989; Larson,

Kapella, Wirtz, Covey, & Berr}', 1998; Leidy & Traver, 1995).

The observed gender differences for sleep quality in the present study are consistent with

previous research in subjects with COPD and subjects with another chronic illness, Parkinson's

disease. In previous studies, women reported lower sleep quality and greater use of sleep

medications than men. These findings are consistent with Klink and Quan (1991) who observed a

higher prevalence of sleep complaints in women subjects with asthma and chronic bronchitis. Also

Smith and colleagues observed significantly higher ratings of sleep disturbance in women than in

men (F(l,400)=5.50, p=.02) in 153 people with Parkinson's disease and their spouses (Smith,

Ellgring, & Oertel, 1997).

This is the first report of a direct relationship between sleep quality and fatigue in people

with COPD. Findings are consistent with research in several other chronic illnesses. Hart (1978)

found that people with lower mobility reported more sleep interruptions and higher levels of
fatigue in a study of 335 patients with multiple sclerosis. Jones and colleagues found that people

with arthritis reported lower sleep quality with a greater amount of fatigue upon awakening (Jones,

Koh, Steiner, Garrett, & Calin, 1996). Likewise, significant correlations were observed between

sleep quality and fatigue (r= .58 and .54, respectively) in two other studies of people with arthritis

(Belza, 1995; Wolfe, Hawley, & Wilson, 1996). The relationship between sleep quality and fatigue

in COPD warrants further study. Results of this study suggest that people with COPD who report

problems with fatigue should be assessed for difficulties with sleep. Interventions that incorporate

sleep hygiene tailored to individual needs could be beneficial in managing fatigue,

c. Functional performance

Subjects reported a moderate level of functional performance on the

Functional Performance Inventory (FPI). Not surprisingly, the highest fiinctional performance was

observed on the Body Care subscale and the lowest was observed on the Physical Exercise

subscale. Scores were consistent with FPI scores from other studies of people with COPD (Larson

et al., 1998); (Leidy, 1999; Reishtein, 2001).

Fatigue demonstrated a strong direct effect on functional performance in this study, and this

is consistent with other repons that fo\ind significant relationships between fatigue and

performance in people with chronic illnesses. Graydon and colleagues observed a significant

correlation between fatigue frequency during breathing problems measured with the Bronchitis-

Emphysema Symptom Checklist and functional performance measured with the Sickness Impact

Profile (r=0.65, p<.0001)in people with COPD (Graydon et al., 1995). More recently, Reishtein

found an inverse relationship (r=-0.27) between fatigue measured with a visual analogue scale and

functional performance measured with the FPI in people with COPD (Reishtein, 2001). Belza
reported significant correlations (r=.56) between fatigue distress as measured with the

Muhidimensional Assessment of Fatigue instrument and function in a sample of people with

rheumatoid arthritis (Belza, 1995).

Findings are in agreement with Bennett and colleagues who observed that fatigue along

with pain strongly predicted functioning in older adults with a variety of illnesses (Bennett,

Stewart, Kayer-Jones, & Glaser, 2002). Testing a structural model of symptoms and function in

225 older adults, they reported standardized path coefficients of -.50 and -.73 respectively between

a latent variable including pain and fatigue and self-reported physical and role and social

functioning. Similar to the current study they found that symptoms mediated the relationship

between disease severity and functional performance. Results support the theory of unpleasant

symptoms which postulates a mediating influence of symptoms on the performance of daily

activities. They suggest that interventions that affect fatigue could help increase the level of

functioning in people with COPD.

The relationship of dyspnea with functional performance in COPD is a robust finding

consistent across studies of COPD subjects regardless of the instrument used to measure function.

Moody and colleagues reported that dyspnea severity had a strong direct effect (beta = -.40) on

functional status measured using the CDAT (Moody, McCormick, & Williams, 1990). Weaver and

associates reported a strong direct relationship (beta = .32) between dyspnea and functional status

using the Pulmonary Function Status Scale (Weaver, Richmond, & Narsavage, 1997). Also,

Reishtein found an inverse relationship between dyspnea and functional performance (r=0.51)

(Reishtein, 2001). One possible explanation for the relationship between dyspnea and functional

performance is that people with COPD experience dyspnea with activity and therefore may limit
 66

performance of actiA'ities to avoid dyspnea. Interventions that help people manage dyspnea during

physical activity may lead to increased functional performance. For instance, exercise training

could help decrease dyspnea by conditioning and desensitizing the person to the sensation of

dyspnea (Carrieri-Kohlman, Gormley. Douglas, Paul, & Stulbarg, 1996a: O'Dormell, McGuire,

Samis, & Webb, 1995).

No direct relationship was observed between sleep quality and functional performance. But

there was a direct relationship between sleep quality and fatigue which in turn influenced

functional performance. This may clarify the observations of Reishtein (2001) who previously

observed no significant relationship between sleep quality and functional performance. In that

study sleep quality was measured with the PSQI and functional performance was measured with

the FPI in people with COPD. Current results suggest that sleep quality is important to

performance of daily activities through its relationship with fatigue.

Amount of airflow obstruction was directly related to functional performance. This result is

consistent with findings of previous studies in COPD. Lee and colleagues found that airflow

obstruction and symptoms (mainly dyspnea) accounted for 57% of the variance in level of

functioning (Lee, Graydon, & Ross, 1991). Also, Anderson found a significant influence of airflow

obstruction on functioning in 126 subjects with COPD (Anderson, 1995). Two studies reported

weak or non-significant influences of airflow obstruction on functioning in subjects with COPD

(Leidy and Traver, 1995; Graydon, Ross, Webster, Goldstein and Avendano, 1995). One possible

explanation for the difference in results could be that both of these studies used the Sickness

Impact Profile to measure fimctioning. Finally, Weaver et al. (1997) observed that airflow

obstruction had an indirect influence on functioning through exercise capacity.

 67

d. Depressed mood

Subjects reported fairly high levels of depressed mood that were associated

with fatigue. The levels of depressed mood were higher than those reported previously in healthy

older people (Table XVII). Results are consistent with those of previous researchers who reported a

close association of depressed mood with fatigue. Chen (1986) found that depressed mood was an

independent predictor of fatigue in people with COPD. Moody and colleagues reported a

significant positive relationship between depressed mood and fatigue (Moody, McCormick, &

Williams, 1990). Graydon and Ross (1995) observed that negative mood was associated with

symptoms including fatigue.

Similar relationships have been observed in people with other chronic illnesses. Positive

associations between depressed mood and subjective fatigue were reported in people with arthritis

(Belza, Henke, Yelin, Epstein, & Gillis, 1993) and renal failure (Cardenas & Kutner, 1982; Sklar,

Riesenberg, Silber, Ahmed, & Ali, 1996). Recently, Lou and colleagues observed that depressed

mood correlated with all dimensions of fatigue except physical fatigue in people with Parkinson's

disease (Lou. Keams, Oken, Sexton. & Nutt, 2001). Results of the current study suggest that

depressed mood leads to fatigue, but it is also very possible that there are similar underlying

mechanisms for depression and fatigue or tliat the combination of symptoms in COPD cause

depressed mood. Studies using non-recursive path analyses may help clarify the relationship

between fatigue and depressed mood.

3. Factors indirectly related to subjective fatigue

a. Anxiety

Level of anxiety in this group of people with COPD was higher than that

level reported for healthy elderly (Kaye et al., 1988; Nyenhuis et al., 1999) but similar to levels

reported for other groups with COPD (Gift & Shepard, 1999; Kellner, Samet, & Pathak, 1992).
Results are consistent with previous research in people with COPD, which found a positive

relationship between anxiety and depressed mood (r=.66) (Anderson, 1995) with anxiety possibly

leading to depressed mood (beta = .696) (Weaver et al., 1997). The relationship between anxiety,

sleep qualit}', and fatigue is consistent with the theor\' of unpleasant symptoms which suggests that

the relationships among all 3 factors may be interactive.

Anxiety had an indirect influence on fatigue. Although this is a new finding it is consistent

with previous research. Chen (1986) found that along with depressed mood, anxiety was an

independent predictor of fatigue in people with chronic illness. Wysenbeek and associates reported

a positive correlation between anxiety and subjective fatigue intensity (r=.34) in people with

systemic lupus erythematosus (Wysenbeek et al., 1993; Wysenbeek, Leibovici, Weinberger, &

Guedj, 1993).

In the current study anxiety had a strong direct influence on sleep quality. The direct

negative relationship observed between anxiet}' and sleep quality has not been reported in COPD,

but is consistent with previous research in healthy people and those with chronic illnesses (Gillin,

1998; Hauri & Esther. 1990; Sandor & Shapiro, 1994; Zammit, Weiner, Damato, Sillup, &

McMillan, 1999). Although there was not a significant difference between men and women in

anxiety levels in this study, women with COPD have reported higher anxiety levels than men in

previous research (Gift & Shepard, 1999). .Assessment and treatment of anxiety especially in

women with COPD may help lessen fatigue levels by promoting better sleep qualit>^

b. Airflow obstruction

The lack of significant correlations between airflow obstruction and fatigue

is not surprising. Previous researchers have reported similar results. Pardue (1984) observed

correlations between the frequency of fatigue and severity of airflow obstruction (r= -.43) with

forced expiratory volume in one second ( FEV,). Breslin and colleagues (1998) found a positive
 69

correlation between FEV, percent predicted and general fatigue (r=-.32) in 41 people with COPD.

However, as noted earlier. Gift and Shepard (1999) found no significant relationship between

subjective fatigue and airflow obstruction as measured by FEV, percent predicted. Findings

support the idea that spirometry alone does not capture the physiologic factors influencing

subjective fatigue.

The number of chest colds or respiratory infections in the last year significantly correlated

with fatigue frequency, intensity and distress and their sum, NRS fatigue. Although the number of

chest colds or respiratory infections did not contribute uniquely to fatigue when stepwise

regression was conducted they may still be important factors that contribute to fatigue and merit

further consideration.

B. Limitations

The major limitation of this smdy was its cross-sectional design. A second limitation was

that it would have been useful to compare fatigue characteristics in people with COPD with those

in healthy people. A third limitation was the marginal reliability of the PSQI. Nevertheless,

previous research on fatigue in people with COPD is limited, so the results of this study provide

valuable information regarding fatigue in this population.

C. Contributions to Knowledge

This study used the theory of unpleasant symptoms to study fatigue in COPD. New

information about characteristics of fatigue, factors that contribute to fatigue, and the impact of

fatigue in COPD were revealed. An important contribution is the observation that fatigue in

COPD shared characteristics with fatigue in other chronic illnesses, such as an association with

other symptoms, depressed mood, and sleep quality. The findings highlight the unique association

of fatigue with dyspnea during activities.

 The observation of significant relationships between anxiety, sleep quality and fatigue

represents a unique contribution to the literature. Another important contribution is the finding of a

strong direct influence of fatigue on the performance of daily activities (functional performance).

D. Future Research

This was an introductor>' study on subjective fatigue in people with COPD. Findings of this

study suggest a need for further research on symptoms in people with COPD. Recommendations

for future research follow:

1. It would be helpful to compare fatigue in healthy older people and people with COPD in

a future study. Also, because there were differences betv/een men and women in some of the

variables in the path analysis, gender differences in fatigue models may exist and should be

explored.

2. Less than half of the variance in fatigue was accounted for by the variables in this study,

so it is probable that other physiologic, sociologic, and psychologic factors influence the level of

subjective fatigue. Examining the relationship of physiologic factors such as exercise capacitv',

strength and endurance and sociologic factors such as social support with fatigue, could allow for

the development of a more complete model in people with COPD.

3. There was a positive relationship between the number of exacerbations and levels of

fatigue in this study, which suggests the need for future research in this area. Additional research

could clarify the role of the frequency and duration of exacerbations as factors contributing to

fatigue levels in people with this illness.

4. Sleep quality was a significant problem for subjects in this study, and aaxiety had a

major impact on sleep quality. Future researchers should explore the relationship between anxiety

and other factors that may influence sleep quality in COPD.

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81
APPENDICES
 APPENDIX A

UNIVERSITY OF ILLINOIS
AT CHiCAGO

Office for ihe Protection of Research Subjects (OPRS)

Office of the Vice Chancellor for Research (MC 572)
203 Administrative Office Building
1737 West Polk Street
Chicago, Illinois 60612-7227

Approval Notice
Initial Revie \Y - Expediteti Review

July 7, 2000

Mary Kapella, MS, R

Visiting Research Specialist
Medical Surgical Nursing (M/C S02)
226 NURS
phone: 312-996-9542
fax: 312-996-4979

RE: Research Protocol #2000-0502

"Subjective Fatigue, Associated Variables and Performance in People with Chr
Obstructive Pulmonary Disease"

Dear Ms. Kapella:

Members oflnstituiional Review Board (ERB) S2 conducted an initial review and approved y
research under expedited review procedures on June 29, 2000. Your research meets the criit
for expedited review as defined in 45 CFR 46.110(b)(1) under the following specific categori

(4) Collection of data through noninvasive procedures (not involving general anesthesia or sedation) routinely
employed in clinical praclicc, excluding procedures iivolving x-rays or microwaves. Where medical devices an
employed, they must be cleared/approved for marketing. (Studies intended to evaluate the safety and efTcciivem
the medical device are not generally eligible for expedited review, includmg studies of cleared medical devices
new indications )

(7) Research on individual or group characteristics or behavior (including, but not limited to, research on
perception, cognition, motivation, identity, language, communication, cultural beliefs or practices, and social
behavior) or research employing survey, interview, oral history, focus group, program evaluation, human facton
evaluation, or quality assurance methodologies.

You may now begin your research. Please note Ihe following information about your approv
research;

UlC
Phone (312) 996-1711 Fax (312) 413-2929 http://www.uic.edu/depts/over
 84

APPENDIX B

RECRUITMENT LETTER, J.LARSON

Date

Name

Dear :

Tiredness or fatigue is a problem for people with emphysema and chronic bronchitis. But the specific
nature of this tiredness, its cause and its effect on people is not fully understood.

We are writing to ask for your help with a dissertation research study of fatigue or tiredness in people
with emphysema and chronic bronchitis. We are studying fatigue, shortness of breath and their effect on
daily activities of people with lung disease. This information will be used to design new treatments for
people with fatigue.

You are one of a small group of people (150) who are being asked to participate in this study. If you
decide to participate in the study you will participate in a brief phone interview and complete a
questionnaire that asks about your symptoms and activities. The questionnaire would take about 40
minutes or less to complete. You would be asked to complete it within a week of receiving it and mail it
back in a postage paid envelope.

Results of the study will be used to develop ways of managing fatigue for other people with lung disease.

Information from this study will be treated confidentially. The questionnaire will have an identification
number. Names and addresses will not be given to anyone. You may receive a summary of the results of
this study for your own information.

We would be most happy to answer any questions you might have. For more information please contact
Mary Kapella MS, RN , doctoral candidate, (312) 996-9542 from 9AM to 4;00PM, Monday through
Friday.

Thank you for your time and help.

Sincerely,

Janet L. Larson, Ph D, RN Maiy C. Kapella MS, RN

Associate Professor Doctoral Candidate

 85

APPENDIX B (continued)

RECRUITMENT LETTER, PHYSICIAN

Date

Name

Address

Dear

Tiredness or fatigue is a problem for people with emphysema and chronic bronchitis. This tiredness,
what causes it and how it affects people in daily life is not yet fully understood.

We are writing to ask for your help with a research study on fatigue or tiredness in people with
emphysema and chronic bronchitis. This study looks at symptoms, causes and daily activities of people
with lung disease. This type of information is needed to develop ways to prevent the day-to-day
difficulties that many people with lung problems have.

You are one of a small group of people who are being asked to be involved in the study. Being a subject
would mean that you would have a simple lung fiinction test (spirometry) that would be done in your own
home or in our office if you prefer. It would take about 5 minutes to complete and could be done during a
home visit that would last about 30 minutes in total. You would complete a questionnaire that asks about
your symptoms and activities. The questionnaire would take about 45 minutes or less to complete. You
would be asked to complete it within a week of receiving it and mail it back in a postage paid envelope.

All activities involved in the study are free of charge. Results of the study will be used to develop ways
of managing fatigue for other people with lung disease.

Information from this study will be treated confidentially. The questionnaire will have an identification
number. Names and addresses will not be given to anyone. You may receive a summaiy of the results of
this study for your own information.

We would be most happy to answer any questions you might have. For more information please contact
Mary Kapella MS, RN , doctoral candidate, (312) 996-9542 from 9AM to 4:00PM, Monday through
Friday or (815) 727-3104 evenings & weekends.

Thank you for your time and help.

Sincerely,

Dr. Mary C. Kapella MS, RN

Doctoral Candidate
 86

APPENDIX B (continued)

RECRUITMENT LETTER, PULMONARY REHABILITATION

Date

Name

Address

Dear :

Tiredness or fatigue is a problem for people with emphysema and chronic bronchitis. This tiredness,
what causes it and how it affects people in daily life is not yet fully understood.

We are writing to ask for your help with a research study on fatigue or tiredness in people with
emphysema and chronic bronchitis. This study looks at symptoms, causes and daily activities of people
with lung disease. This type of information is needed to develop ways to prevent the day-to-day
difficulties that many people with lung problems have.

You are one of a small group of people who are being asked to be involved in the study. Being a subject
would mean that you would have a simple lung function test (spirometry) that would be done in your own
home or in our office if you prefer. It would take about 5 minutes to complete and could be done during a
home visit that would last about 30 minutes in total. You would complete a questionnaire that asks about
your symptoms and activities. The questionnaire would take about 45 minutes or less to complete. You
would be asked to complete it within a week of receiving it and mail it back in a postage paid envelope.

All activities involved in the study are free of charge. Results of the study will be used to develop ways
of managing fatigue for other people with lung disease.

Information from this study will be treated confidentially. The questionnaire will have an identification
number. Names and addresses will not be given to anyone. You may receive a summary of the results of
this study for your own information.

We would be most happy to answer any questions you might have. For more information please contact
Mary Kapelia MS, RN , doctoral candidate, (312) 996-9542 from 9AM to 4:00PM, Monday through
Friday.

Thank you for your time and help.

Sincerely,

Name Mary C. Kapelia MS, RN

Director Doctoral Candidate

 87

APPENDIX C

RECRUITMENT FLYER

VOLUNTEERS NEEDED FOR A

RESEARCH STUDY:

"Fatigue^ Other Symptoms and Activities in

People with Lung Disease"

University of Illinois at Chicago

College of Nursing

WHO CAN VOLUNTEER:

# people with emphysema or chronic bronchitis age

45 and over

WHArS INVOLVED:

You will have a simple lung function test (spirometry) and

complete a questionnaire. This will take about 1 hour of your
time.

WHO DO I CALL: Mary Kapetla MS^ /?N, doctoral candidate^ (312)

999-9542^ SAM to 4:30PM, Monday thru Friday,
or (815) 727-3104, evenings & weekends.
 88

APPENDIX D
ID

Date

Time

Subjective Fatigue, Associated Variables

and Performance in People with
Chronic Obstructive Pulmonary Disease

Questionnaire

Mary C. Kapella, MS, RN, Doctoral Candidate

Janet L. Larson, PhD, RN

University of Illinois at Chicago

 89

APPENDIX D (continued)

Dear Study Participant:

Thank-you for agreeing to complete this questionnaire. Below are the general
instructions for it. Specific instructions are provided at the top of each part of the
questionnaire.

General Instructions:

1. Please complete the questionnaire in order. The entire questionnaire does

not have to be completed in one sitting, but we ask that you finish it within a
week and return it.

2. Please write in your name and the date and time you started the
questioimaire.

3. Please take your time and don't rush when you are answering the questions.
Read each question careflilly and give us your best answer.

4. Remember that there is no right or wrong answer.

5. This information is confidential and we will not identify you or share your
answers with anyone.

6. When you have finished, please go back and check each page to make sure
that none was missed.

7. When you have finished the questionnaire and checked it, please return it to
us in the stamped envelope provided.

8. If you have questions about this questionnaire please call Mary Kapella at
(312) 996-9542 or (815)727-3104.

Thank-you for your participation.

 90

APPENDIX D (continued)

Please describe your symptom patterns over the last week. Circle the
appropriate number of your answer.

How often have you had each of the following symptoms over the last week?

Not at all Rarely Occasionally Frequently Constantly

Shortness of 1 2 3 4 5
breath
Fatigue or 1 2 3 4 5
tiredness

How severe were vour svmotoms over the last week?

Not at all A little Moderately Quite a bit Extremely

Shortness of 1 2 3 4 5
breath
Fatigue or 1 2 3 4 5
tiredness

How distressed or bothered were vou over the last week as a result of the followina
symptom?

Not at all A little Moderately Quite a bit Extremely

Shortness of 1 2 3 4 5
breath

Fatigue or 1 2 3 4 5
tiredness
 91

APPENDIX D (continued)

FATIGUE ASSESSMENT INSTRUMENT

REMOVED FOR COPYRIGHT PURPOSES

 92

APPENDIX D (continued)

PITTSBURGH SLEEP QUALITY INDEX

REMOVED FOR COPYRIGHT PURPOSES

 APPENDIX D (continued)

PROFILE OF MOOD STATES

REMOVED FOR COPYRIGHT PURPOSES

 APPENDIX D (continued)

FUNCTIONAL PERFORMANCE INVENTORY

REMOVED FOR COPYRIGHT PURPOSES

 95

APPENDIX D (continued)

We would like to ask you some questions about you and those close to you.
Please fill in the blanks or circle your answer.

1. Sex;

A. Female
B. Male

2. Age: years

3. Race:
A. White
B. African-American
C. Oriental
D. Other

4. What is the highest level of education you that you have completed?

A. Less than 7th grade

B. Junior high school ( 7th and 8th grade)
C. Some high school
D. High School graduate
E. Some college
F. College graduate
G. Graduate degree

5. If you are living with your spouse, what is the highest level of education he or she
has completed?

A. Less than 7th grade

B. Junior high school ( 7th and 8th grade)
C. Some high school
D. High School graduate
E. Some college
F. College graduate
G. Graduate degree
 96

APPENDIX D (continued)

6. What is your current job status?

A. Full-time job
B. Retired, not working
C. Housewife/homemaker
D. Not working due to my illness
E. Part-time job
F. Retired, but working part-time
G. Housewife, but with a part-time job
H. Not working now due to another reason, list
reason

7. if working, what is your job title?

8. What would best describe your job status 5 years ago?

A. Full-time job
B. Retired, not working
C. Housewife/homemaker
D. Not working due to my illness
E. Part-time job
F. Retired, but working part-time
G. Housewife, but with a part-time job
H. Not working due to another reason, list
reason

9. What is your spouse's employment status and occupation?

A. Full-time job (occupation )

B. Retired, not working
C. Housewife/homemaker
D. Not working due to my illness
E. Part-time job (occupation )
F. Housewife, but with a part-time job (occupation )
H. Not working due to another reason, list
reason
I. Not applicable

2. Please list the medications ycu are taking:

 APPENDIX D (continued)

This is tiie end of the questionnaire. Thank-you again for taking the time to
complete it.
 98

APPENDIX E

Phone Script: Introduction and Explanation of Study

The following text will be read to potential participants w'hen they are contacted for participation
in the study:

"Hello, my name is Mary Kapella and I am calling from Dr. Janet Larson's laboratory at the
University of Illinois, College of Nursing. You were/are a volunteer for our study on respiratory
muscle strength and responded to our letter about my dissertation study (or for those volunteers
who are not subjects in Dr. Larson's study: I received the message about your interest in my
study). I am calling to tell you about my study. The purpose of the study is to find out more
about fatigue in people with lung disease, factors that influence fatigue and to describe daily
activity of people who experience fatigue. Participation would involve filling out a questionnaire
about your symptoms, daily activity, sleep quality and mood. The questionnaire would take
about 45 minutes or less to complete. I will also come to your home or convenient place to
complete a simple breathing test. You will breathe in until you are completely fiall and then you
will breathe out forcefully until you are completely empty. We will do this maneuver 3
times.(Note: subjects recruited firom Dr. Larson's study will not have spirometry done).

If you are willing to be involved as a subject in my study we will mail or give you the
questiormaire to your home with a self-addressed stamped envelope, asking you to complete it
within one week and mail it back to us. We would appreciate your assistance, but fully
understand if you don't have time or are not interested. All research done at the University must
first be approved by the Institutional Review Board to make sure that the research is done safely
and that it protects peoples rights. What it means is that your participation in this study is
voluntary; in other words, you know what you are getting into and we are not making you join
the study. Your decision whether or not to participate will not affect your current or foture
relations with the University. If you decide to participate, you are free to withdraw from the
study at any time without affecting that relationship. At this point I would like to answer any
questions you might have about the study.

I would like to find out when I can come to your home to discuss details of the study, do the
spirometry test and drop off the questionnaire. It should take less than 45 minutes for the visit.
When would be a good time for you? (Note: subjects recruited from Dr. Larson's study will not
have spirometry done)
 APPENDIX F

SCREENING QUESTIONNAIRE

Subjective Fatigue, Associated Variables and Performance in People with COPD

Inclusion/Exclusion Criteria:

1. FEV] < 70% predicted

No otiier major heaitii problems which could influence fatigue or functional

performance;

Cancer

Congestive heart failure

Stroke

Kidney disease

Liver failure

J. Not currently participating or recently (last 1 month) in phase 1 of a pulmonary

rehabilitation program

_4. No history of lung surgery

_5. No history of asthma

_6. No major exacerbation of COPD within the last 2 months

1. Age is 45 years or older

_8. Smoking history includes at least 10 pack years

 100

APPENDIX G

University of Illinois at Chicago

Consent for Participation in Research

"Subjective Fatigue, Associated Variables and Performance in People with

Chronic Obstructive Pulmonary Disease"

(For participants not enrolled in study H 95- 077)

Why am I being asked?

You are being asked to be a subject in a research study that will describe the symptom of fatigue in
people with lung disease. This study is being conducted by Mary C. Kapella, PhD candidate and Dr.
Janet L. Larson, PhD, RN at the University of Illinois at Chicago (UlC) College of Nursing.

You are being asked to join this study because you have emphysema and/or chronic bronchitis and
may be eligible to participate. We ask that you read this consent form and ask any questions you may
have before agreeing to be in the research.

Your participation in this study is voluntary. Your decision whether or not to participate will not affect
your current or future relations with the University. If you decide to participate, you are free to
withdraw from the study at any time without affecting that relationship.

Whv is this research being done?

The feeling of fatigue or tiredness is a common problem for people with chronic obstructive
pulmonary disease (COPD) but little is known about its nature in people with this disease. The
purpose of the study is to describe the nature of fatigue and its relationship with shortness of
breath, performance of daily activities, anxiety, depression and sleep quality in people with COPD.
A sample of 150 people age 45 years and older with moderate to severe COPD will be recruited.
You will be briefly interviewed by phone, perform spirometry testing and complete a questionnaire.
Spirometry testing includes taking a deep breath in and blowing hard into a spirometer. There is a
risk that you will feel light-headed for a short time after the spirometry test. A full explanation of
the study will be given to you by phone and prior to an informed written consent which will be
obtained before the spirometry testing. It is anticipated that knowledge derived from this study will
be used to help design and test treatments to help manage fatigue and its effects.
 101

APPENDIX G (continued)
What is the purpose of this research?

The purpose of the study is to find out more about fatigue in people with lung disease, factors that
influence fatigue and how it affects daily activity.

Procedure: To qualify for this study you must have moderate to severe lung disease with no other
major health problems. A total of 150 people with lung disease will be involved in the study. A si.mpie
breathing test - a pulmonary function test like the ones you may have had before will be done to find out if
you qualify for the study. This test will take about 5 minutes to complete and will be done here in your
hom.e during this visit. Your height and weight will be taken as part of the pulmonary function test.
Spirometry testing measures the severity of your lung disease by measuring the amount of air you
can exhale. The test is done by taking a deep breath in then blowing hard into a spirometer.

If you qualify for the study you will fill out questionnaires that ask about your symptoms including
fatigue and shortness of breath, sleep quality, activities in day-to-day life and use of medications and
other treatment. The questionnaires should take about 40 minutes or less to complete and can be
completed here at home. I will leave them for you to fill out and return to us in the postage-paid
envelope.

What are the potential discomforts and risks?

The research has a risk that you will feel slightly faint after the pulmonary function test. This is not
likely and the feeling is usually mild and lasts only a minute or so. I will be monitoring you closely and
the test will be stopped if any discomfort is felt.

Are there benefits to taking part in the research?

This study is not being done to improve your condition or health. You will receive a free lung function
test. The study results may be of benefit to others with lung disease who have fatigue.

What about privacy and confidentiaiitv?

The only people who will know you are a research subject are members of the research team. No
information about you, or provided by you during the research, will be disclosed to others without your
written permission, except:

- if necessary to protect your rights or welfare (for example, if you are injured and need
emergency care or when the UlC Institutional Review Board monitors the research or consent
process); or

- if required by law.

When the results of the research are published or discussed in conferences, no information will be
included that would reveal your identity. Any information that is obtained in connection with this study
and that can be identified with you will remain confidential and will be disclosed only with your
permission or as required by law.

Information about you will be kept in file cabinets that are behind a locked door. Keys are required to
 102

APPENDIX G (continued)
gain access to the files. Only members of Dr. Larson's research team will have access to the data.
Five years after the results are published, your information will be shredded.

What if I am injured as a result of mv participation?

In the event of physical injury resulting from this research, treatment will be made available through
the University of Illinois at Chicago Hospital. However, you or your third party payor, if any, will be
responsible for payment of this treatment. There is no compensation and/or payment for medical
treatment from the University of Illinois at Chicago for such injury, except as may be required of the
University by law. If you feel you have been injured, you may contact the researcher, Mary Kapella at
(312) 996-9542 or her advisor, Dr. Janet Larson at (312) 996-7955.

What are the costs for participating in this research?

There will be no cost to you for participation in the study. You will receive no payment for participation
in the study.

Who should I contact if I have questions?

You may call Mary Kapella, the principal investigator at (312) 996-9542 or Dr. Janet Larson, her
advisor, at (312) 996-7955. any time for further questions.

What are mv rights as a research subject?

If you have questions about your rights as a research subject, you may call the Office for Protection of
Research Subjects at 312-996-1711. You have the right to withdraw from the study at any time
without penalty. You will be given a copy of this form for your information.

1 have read (or someone has read to me) the above information. I have been given an opportunity to
ask questions and my questions have been answered to my satisfaction. I agree to participate in this
research. I have been given a copy of this form.

Subject's Signature Date

Signature of Researcher Date

Signature of Witness Date

 103

APPENDIX H

DISTRIBUTION OF NRS FATIGUE AND NRS DYSPNEA DIMENSIONS

FREQUENCY

Variable Not at all Rarely Occasionally Frequently Constantly

Number (Percent)

NRS Fatigue ^ 3(2.3) 16(12.5) 55(43) 46(35.7) 8(6.2)

NRS Dyspnea" 1(0.8) 7(5.4) 54(41.9) 57(44.2) 10(7.8)

INTENSITY

Variable Not at all A little Moderately Quite a bit Extremely

Number (Percent)

NRS Fatigue- 6(4.7) 37(28.7) 46(35.7) 34(26.4) 5(3.9)

NRS Dyspnea" 1(.8) 26(20.2) 61(47.3) 37(28.7) 4(3.1)

DISTRESS

Variable Not at all A linle Moderately Quite a bit Extremely

Number (Percent)

NRS Fatigue' 21(16.3) 41(31.8) 36(27.9) 24(18.6) 6(4.7)

NRS Dyspnea" 15(11.6) 40(31.0) 42(32.6) 28(21.9) 4(3.1)

' n=128.

" n=129.
 104

APPENDIX I

CORRELATIONS OF DYSPNEA, FATIGUE AND FUNCTIONAL PERFORJVLANCE

WITH PSQI SUBSCALES

Dyspnea Fatigue Functional

Performance

NRS CRQ NRS POMS FPI

o
Sleep Quality .027 .046 .247**

1
Sleep Latency .182 -.102 .226* .245** -.134

Sleep Duration .109 -.062 .194* .185* -.139

Sleep Medication .260** -.179* .185* -.154

Sleep Efficiency .133 -.121 .163 .202* -.206*

Sleep Disturbance 29*7** -.167 344** -.305**

Daytime Dysfunction .411 ** - 399** .462** .600** -.216**

* p <.05.
** p < .01.
 105

APPENDIX J

CORRELATIONS OF DYSPNEA, FATIGUE AND SLEEP DIFFICULTY

WITH FPI SUBSCALES

Dyspnea Fatigue Sleep

Difficulty

NRS CRO NRS POMS PSQI

Body Care -.458** .376** -.322** -.360** -.262**

Maintaining the -.467** .407** -.363** -.332** -.190*

Household

Physical E.xercise -.478** .467** - 493** -.373** -.193*

Recreation -.510** .319** -.475** _442** -.270**

Spiritual Activities -.315** 242** -.289** - 2^7** -.187*

Social Interaction -.510** .388** -.475** -.384** -.380**

* p < .05.
** p <.0L
 VITA

NAiME: Mary C. Kapella

EDUCATION: Associate Degree in Nursing, Joliet Junior College, Joliet, Illinois, 1977.

Bachelor of Science in Nursing, Aurora University, College of Nursing,

Aurora, Illinois, 1990.

Master of Science, Nursing, University of Illinois at Chicago, College of

Nursing, Chicago, Illinois, 1994.

Doctor of Philosophy, Nursing, University of Illinois at Chicago,

College of Nursing, Chicago, Illinois, 2003.

RESEARCH Research Specialist, University of Illinois at Chicago, College of

EXPERIENCE: Nursing, Pulmonary Nursing Research Laboratory, 1997- 2003.

Research Assistant, University of Illinois at Chicago, College of

Nursing, 1996-1997.

Site Research Associate, AACN Thunder Project, 1994.

TEACHING Clinical Instructor. University of Illinois at Chicago, Medical-Surgical

EXPERIENCE: Nursing. Introduction to Clinical Concepts and Processes. Fall, 2002,
Summer, 1997.

Teaching Assistant. University of Illinois at Chicago, Medical-Surgical

Nursing. Introduction to Nursing Research and Statistics. Fall, 2000.

Clinical Instructor. Aurora University, Aurora, IL, College of Nursing,

Medical - Surgical Nursing, 1994.

Substitute Clinical Instructor. Joliet Junior College, Joliet, IL, Critical

Care Nursing, 1992, 1993, 1997.

HONORS; Doctoral Dissertation Award, American Lung Association, Chicago

Metropolitan Assembly, 1998.

Doctoral Dissertation Award, American Lung Association, Chicago

Metropolitan Assembly, 1999.

106
 107

Sigma Theta Tau, Lambda Upsilon. Inducted in May, 1990.

Keyton Nixon Scholarship Award, 1991.

PROFESSIONAL American Thoracic Society, Nursing Assembly

MEMBERSHIP: Respiratory Nursing Society, National
Respiratory Nursing Society, Northern Illinois Chapter
American Lung Association, Chicago Metropolitan Chapter
Midwest Nursing Research Society
American Association of Critical Care Nurses, Joliet Area Chapter
Sigma Theta Tau

ABSTRACTS: Kapella, MC., Merritt, SL., Knafl, K. (1994). Experiences and needs of
surrogate decision-makers. American Journal of Critical Care, (National
Teaching Institute Abstracts), 3(3), p224.

Covey, MK, Larson, JL, Kapella, MK, Alex, CG, Albazzaz, F. (2001).
Bone mineral density in men and women with COPD, American
Journal of Respiratory and Critical Care Medicine, 163(5), A57.

Larson, JL, Covey, MK, Alex, C, Albazzaz, FJ, Kapella, MK (2001).

Inspiratory muscle strength in chronic obstructive pulmonary disease.
American Journal of Respiratory and Critical Care Medicine. 163(5),
A966.

Kapella, MC, Larson, JL, Patel, M., Beriy, J., Covey, MK. (2002).
Subjective fatigue and performance in people with COPD. American
Journal of Respiratory and Critical Care Medicine, 165(8), A460.

Covey, MK, Larson, JL, Kapella, MC, Alex, CG,

Albazzaz, F, Sibilano, H. (2002). Long-term effects of pulmonary
exacerbation on pimax, body composition, functional performance in
COPD. American Journal of Respiratory and Critical Care Medicine,
165(8), A737.

Larson JL, Covey MK, Alex, C., Albazzaz F, Kapella MC, Santefort K.
(2002). "Inspiratorymuscle strength in COPD: two-year followup".
Proceedings of the Midwest Nursing Research Society Conference,
Chicago, IL, No.3232, p.ll.

Covey MK, Larson, JL, Kapella, MC (2003). Barriers Efficacy; COPD

Version. American Thoracic Society International Conference, Seattle,
WA.
 108

PUBLICATIONS: Larson, JL., Kapella, MC., Wirtz, S., Covey, MK., & Berry, J. (1998).
Reliability and validity of the Functional Performance Inventory in
patients with moderate to severe chronic obstructive pulmonary disease.
Journal of Nursing Measurement. 6(1") 55-73.

Kapella, MC., (1994). Review of Handbook of Nursing Diagnosis (5th

edition) by Carpinito, L., Journal of Nursing Staff Development. 10(2).