UNIVERSITY OF CALGARY

UNIVERSITY OF CALGARY
Head and Neck Cancer Survivors’ Exercise Preferences and Barriers Before and After
Participation in an Exercise Intervention
by
Colleen Lea Jackson
A THESIS
SUBMITTED TO THE FACULTY OF GRADUATE STUDIES
IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE
DEGREE OF MASTER OF SCIENCE
GRADUATE PROGRAM IN KINESIOLOGY
CALGARY, ALBERTA
APRIL, 2016
© Colleen Lea Jackson 2016
Abstract
Purpose: This study examined the exercise preferences and barriers of head and neck cancer
(HNC) survivors in relation to exercise experience. Methodology: Participants from the
ENHANCE trial (n=22) completed questionnaires on exercise preferences and barriers, which
were further explored in semi-structured interviews with a subset of participants (n=17). Results:
Before participation in the ENHANCE program, lack of interest and time were the primary
exercise barriers. After participation, there was a significant decrease in typical barriers including
lack of interest (p=.008)), exercise not a priority (p=.039), and not in routine (p=.004).
Participants also reported significant increases in preferences for engaging in exercise at a cancer
centre (p=.031), and with other survivors (p=.016). Four higher-order themes emerged from
interview data analysis pertaining to preferences (exercise types, company, supervision, and
logistics), and three higher-order themes regarding barriers (physical, psychological and
external). Significance: The results identify key factors for effective HNC exercise program
design.
Keywords: head and neck cancer, exercise, physical activity, behaviour change
ii
Acknowledgements
I would like to thank my supervisor, Dr. Nicole Culos-Reed, for providing me with life-changing
opportunities and for opening my eyes to what is possible when someone is truly passionate and
invested in what they do. I would also like to thank Lauren Capozzi and Dr. Justine Dowd for
their mentorship, endless encouragement, and guidance. Thank you to my committee members
and examiners, Drs. William Bridel, Harold Y. Lau, Guy Pelletier, and Nancy Moules, for
making this research possible. Finally I would like to thank my family and friends, for
supporting me through the challenges and celebrating with me after the successes.
iii
Dedication
To the ENHANCERs…
Your endless determination, boundless positivity, and
unimaginable strength of spirit are a true inspiration.
iv
Table of Contents
Abstract .............................................................................................................................. ii
Acknowledgements .......................................................................................................... iii
Dedication ......................................................................................................................... iv
Table of Contents ...............................................................................................................v
List of Tables ................................................................................................................... vii
List of Figures and Illustrations .................................................................................... vii
List of Symbols, Abbreviations and Nomenclature .................................................... viii
Epigraph ........................................................................................................................... ix
Chapter One: Introduction and Literature Review .......................................................1
Head and Neck Cancer and Exercise ...........................................................................1
Cancer Survivors’ Exercise Preferences and Barriers ...............................................4
Head and Neck Cancer Survivors’ Exercise Preferences and Barriers ...................6
The ENHANCE Exercise Trial .....................................................................................8
Methodology .................................................................................................................10
Statement of Contribution ..........................................................................................11
Chapter Two: Manuscript ..............................................................................................12
Background ..................................................................................................................12
Objectives .....................................................................................................................14
Methods.........................................................................................................................14
Participants. ............................................................................................................14
Questionnaires. .......................................................................................................15
Demographics. ..................................................................................................16
Exercise levels. ..................................................................................................16
Quality of Life. ..................................................................................................16
Depression. ........................................................................................................17
Symptom severity. ..............................................................................................17
Preference and barriers. ...................................................................................17
Interviews. ...............................................................................................................18
Data analysis. ..........................................................................................................18
Quantitative. ......................................................................................................18
Qualitative. ........................................................................................................18
Results ...........................................................................................................................19
Subject characteristics. ..........................................................................................19
Quantitative results. ...............................................................................................21
Preferences. .......................................................................................................21
Barriers..............................................................................................................23
Qualitative Results..................................................................................................25
Preferences ........................................................................................................25
Barriers ..............................................................................................................31
Discussion .....................................................................................................................35
Strengths and limitations. ......................................................................................37
Future directions. ...................................................................................................39
Clinical implications. ........................................................................................39
v
Future research.................................................................................................40
Conclusion ....................................................................................................................40
References .....................................................................................................................41
Chapter Three: Conclusions and Future Directions ....................................................44
The Role of Education .................................................................................................44
Implications for Health Professionals ........................................................................45
Participant Experiences During the ENHANCE Trial ............................................46
Caregivers’ Program Perceptions and Experiences .................................................46
References .........................................................................................................................48
Appendices ........................................................................................................................52
Appendix A: Study Recruitment ................................................................................52
Appendix B: Semi-Structured Interview Guide .......................................................53
Appendix C: Questionnaire ........................................................................................54
Appendix D: Correlation Tables ................................................................................77
Appendix E: Theme Charts ........................................................................................78
vi
List of Tables
Table 1. Subject characteristics (n=22)......................................................................................... 20
Table 2. Exercise preferences of HNC survivors before and after participation in an exercise
trial (n=22) ............................................................................................................................ 22
Table 3. Exercise barriers of HNC survivors before and after participation in an exercise trial
(n=22) .................................................................................................................................... 24
Table 4. Demographic and medical correlates of total number of exercise barriers
experienced before participation in the ENHANCE trial. .................................................... 77
Table 5. Demographic and medical correlates of total number of exercise barriers
experienced after participation in the ENHANCE trial. ....................................................... 77
List of Figures and Illustrations
Figure 1: ENHANCE Study Flow Chart (Capozzi et al., 2012) ..................................................... 9
Figure 2: Recruitment Diagram .................................................................................................... 52
vii
List of Symbols, Abbreviations and Nomenclature
Symbol
Definition
HNC
Head and neck cancer
QOL
Quality of life
TBCC
Tom Baker Cancer Centre (Calgary, AB)
HPV
Human papillomavirus
CEP
Certified Exercise Physiologist Certified
CPT
Personal Trainer
RET
Resistance exercise training
AET
Aerobic exercise training
PA
Wellspring
Thrive Centre
Physical activity
Community cancer support centre
Free fitness facility for cancer survivors
viii
Epigraph
So [ENHANCE] marked a turning point through that whole journey that really stands out
to me. It's a positive that I've come out with. I always try to find something positive and
that is, that's what this whole study and everything associated with it is meaning to me.
[Exercise] is what feeds the mind and feeds the soul... It’s part of the treatment but in a
different way. You know, this helps the body heal. That’s why it’s important.
-ENHANCE Participants
ix
Chapter One: Introduction and Literature Review
Head and Neck Cancer and Exercise
The primary focus in cancer care has traditionally been dedicated to creating diagnostic
tools and treatments to improve cancer patient prognosis and survival. Due to the substantial
progress that has been made in these areas, survival rates are rising across all cancer groups
(Jemal et al., 2009). This has resulted in a growing population of cancer survivors, many of
whom are experiencing diminished quality of life (QOL) due to the physical and psychological
side effects resulting from their cancer and associated treatments (Ferlay et al., 2010; Schmitz et
al., 2005; Siegel, Naishadham, & Jemal, 2012). This finding is particularly pronounced among
head and neck cancer (HNC) survivors. While the five-year survival rate has increased to more
than 60% over the past 10 years (Piccirillo, 2011), the demanding treatments and unique side
effects experienced by this group leave most survivors with decreased QOL well into
survivorship (Bjordal, Kaasa, & Mastekaasa, 1994; Gritz et al., 1999; S. N. Rogers et al., 2006).
One unique and particularly impactful side effect experienced by HNC survivors is substantial,
uncontrolled weight loss, known as cachexia. Cachexia, which is estimated to affect over 50% of
advanced HNC patients (Couch et al., 2007), is defined by the National Institute of Health as the
ongoing loss of skeletal muscle mass, regardless of loss of fat mass, which is not preventable or
reversible using nutritional support (Fearon et al., 2011). This dramatic muscle loss has
substantial implications on patients’ physical functioning, survival, and overall quality of life
(Couch et al., 2007).
Over the past two decades, researchers have investigated exercise interventions for cancer
survivors as a possible means to improve physical and psychological outcomes into survivorship.
The results of these trials support exercise interventions as safe and effective throughout the
cancer journey, including during and after treatment (Speck, Courneya, Masse, Duval, &
1
Schmitz, 2010). The benefits of increased exercise levels include decreased cancer related
fatigue, anxiety, depression, inflammatory markers, and muscle wasting, as well as improved
treatment completion rates, physical functioning, muscular strength, and overall QOL (Fong et
al., 2012). Along with the evidence among other cancer groups, there exists a growing evidence
base to support exercise as a safe and effective means to improve the physical and psychological
well-being of HNC survivors. More specifically, improvements have been found in fatigue
levels, body composition, functional well-being, and overall QOL (Capozzi, Nishimura,
McNeely, Lau, & Culos-Reed, 2015). Additionally, there is preliminary evidence to suggest that
engaging in exercise may facilitate and even accelerate recovery from HNC treatment related
side effects (Capozzi, Nishimura, et al., 2015; Lonbro, 2014).
While the evidence supporting exercise as medicine continues to grow, there are few
HNC survivors that engage in exercise and therefore experience the benefits. In a group of 59
HNC survivors an average of 1.5 years out of treatment, only 8.5% were found to be sufficiently
active and over half were sedentary (Rogers et al., 2008). Importantly, similar to findings among
other cancer groups, the low levels of participation are not reflective of a lack of interest in
exercise. Specifically, among 90 HNC survivors 75% were interested in participating in an
exercise program, yet only 51% felt capable of engaging in one (Rogers, Malone, et al., 2009).
This indicates a need to address the gap between HNC survivor interest and subsequent adoption
of exercise. It also indicates that once in an intervention, programming must focus on
empowering survivors to feel capable and confident in their ability to exercise. This confidence,
or self-efficacy to be physically active, is a critically important social cognitive variable known
to be a significant determinant of exercise intentions and behaviour (Taylor, 2013).
2
The gap between interest and engagement is not exclusive to HNC survivors, though it is
more pronounced (Jones & Courneya, 2002; Stevinson et al., 2009). Low exercise levels are
present among all cancer groups, with only 20.1% to 31.5% of cancer survivors meeting the
exercise recommendations set out by the American College of Sports Medicine (Courneya,
Katzmarzyk, & Bacon, 2008). This challenge of moving from intention to action is not unique to
the cancer population. Previous findings among geriatric populations have shown that exercise
tailored to the preferences of the target population results in higher program adoption and
adherence (Mills, Stewart, Sepsis, & King, 1997). Therefore, in an effort to address this gap
among the cancer population there has been a growing number of studies examining the exercise
preferences and barriers of various cancer groups, both in population-based or convenience
samples (Jones & Courneya, 2002; Karvinen, Raedeke, Arastu, & Allison, 2011), and among
exercise trial participants (Emslie et al., 2007; Ottenbacher et al., 2011; Spence, Heesch, &
Brown, 2011).
While population-based or convenience samples provide important information regarding
the typical exercise preferences and barriers of the cancer survivors, the majority of participants
in these studies tend to be sedentary or inactive (Jones & Courneya, 2002; Karvinen et al., 2011;
Rogers, Courneya, Shah, Dunnington, & Hopkins-Price, 2007). While these results provide
information on factors important for the uptake or adoption of exercise, they may not be
representative of individuals’ perspectives once they begin regular exercise participation. Given
that the cancer survivors are primarily sedentary, they likely have not been exposed to a variety
of exercise types and formats, and so may be unable to comment on an accurate exercise
preference. Findings in preferences and barriers among those with experience (exercise
3
intervention participants) may serve as a better indication of factors important for exercise
adherence and maintenance.
Cancer Survivors’ Exercise Preferences and Barriers
Previous and current participants in exercise interventions indicate several preferences
that are different than those found in the convenience samples or population-based survey
literature. Specifically, mail-out surveys conducted in largely sedentary breast cancer survivors
found that approximately 40% prefer to exercise alone and another 30-43% prefer to exercise
with a friend or family member, whereas only 9-25% prefer to exercise with other survivors
(Karvinen et al., 2011; Rogers et al., 2007; Rogers, Courneya, Verhulst, Markwell, & McAuley,
2008; Rogers, Markwell, Verhulst, McAuley, & Courneya, 2009). This is in contrast to the
preferences of those with exercise experience, where the majority of findings indicate a
preference for group classes and emphasize the importance of classes composed of fellow
survivors (Adamsen, Stage, Laursen, Rorth, & Quist, 2012; Emslie et al., 2007; Rogers, Vicari,
& Courneya, 2010).
Another stark contrast is found in supervision preferences. Specifically, there was a
strong tendency among exercise intervention participants to prefer supervised activity, whereas
in convenience sample populations, non-supervised exercise tends to be the primary preference,
often noted by over 50% of the sample (Adamsen et al., 2012; Anderson, Caswell, Wells, Steele,
& Macaskill, 2010; Jones & Courneya, 2002; Spence et al., 2011; Vallance, Courneya, Jones, &
Reiman, 2006). The literature investigating the exercise preferences of convenience samples has
also found that the overwhelming preference for exercise type was walking (Karvinen et al.,
2011; Rogers et al., 2007; Rogers, Malone, et al., 2009; Rogers, Markwell, et al., 2009). This
finding was echoed by only two of the studies conducted on those with exercise intervention
4
experience, one of which only found this preference among the control group that had not
engaged in the exercise intervention (Hefferon, Murphy, McLeod, Mutrie, & Campbell, 2013;
Spence et al., 2011). The same study found that resistance training was the preferred form of
exercise among those who had experienced the intervention (Hefferon et al., 2013). While the
authors did not offer an explanation for this difference, it can be speculated that the instruction
the intervention group received in resistance training led to increased self-efficacy and
enjoyment. Overall, the findings of these studies support that a difference exists between the
preferences of those who have been exposed to an exercise intervention, and those of the largely
sedentary population-based or convenience samples.
In addition to investigating exercise preferences (factors that draw participants to
programs), it is important to consider exercise barriers (factors that prevent individuals from
attending programs) when designing tailored exercise programs. Cancer survivors who engaged
in exercise interventions experienced a variety of barriers to their adherence throughout and after
participation (Courneya et al., 2005; Courneya, McKenzie, et al., 2008; Emslie et al., 2007;
Gotte, Kesting, Winter, Rosenbaum, & Boos, 2014; Hefferon et al., 2013; Loh, Chew, & Lee,
2011; Ottenbacher et al., 2011; Rogers et al., 2010). These barriers were related to cancer
specific side effects as well as to psychological and external constructs that are commonly
reported among the general population. Examples of psychological barriers experienced include
low motivation, low self-efficacy, and not enjoying exercise (Hefferon et al., 2013; Ottenbacher
et al., 2011). Physical barriers either stemmed from cancer and related treatments, such as
fatigue, pain, and nausea, or were general physical barriers often related to aging (Adamsen et
al., 2012; Anderson et al., 2010; Courneya et al., 2005; Courneya, McKenzie, et al., 2008).
External barriers encompass all barriers related to access to facilities and exercise partners, as
5
well as factors like weather and competing time commitments. While responses varied between
studies, in general the most common barriers reported were fatigue, being too busy, and
treatment related side effects (Courneya et al., 2005; Emslie et al., 2007; Hefferon et al., 2013).
Specific barriers, and the prevalence of each barrier reported, differed among tumour and ethnic
groups (Courneya et al., 2005; Hefferon et al., 2013; Loh et al., 2011; Ottenbacher et al., 2011;
Rogers et al., 2010). Additionally, one study has examined the change in barriers from before to
after exercise trial participation (among breast and prostate cancer survivors) and found that over
a third of participants had significantly reduced barriers after participation, suggesting that
barriers experienced may change with exercise participation (Ottenbacher et al., 2011). Given
that previously conducted studies have found different exercise barriers exist among those with
different cancer types, ethnicities and exercise levels (Karvinen et al., 2011; Loh et al., 2011;
Ottenbacher et al., 2011), there is a need to consider population specific barriers when designing
exercise interventions.
Head and Neck Cancer Survivors’ Exercise Preferences and Barriers
Currently, no studies have been conducted investigating the exercise preferences and
barriers of HNC survivors who have engaged in an exercise intervention. Two studies have
examined preferences and barriers in largely sedentary convenience samples of HNC survivors
(Rogers et al., 2008; Rogers, Malone, et al., 2009). The preferences of HNC survivors were
investigated in a group of 90 survivors using a cross-sectional survey (Rogers, Malone, et al.,
2009). The findings from this study closely resembled results from population-based or
convenience sample surveys in other cancer groups (Rogers, Malone, et al., 2009), where the
majority of respondents indicated preferring outdoor or home-based exercise, performed alone
and unsupervised. This is in clear contrast to the findings in the post-exercise program literature
6
previously discussed, albeit not in HNC specifically, which may be reflective of the experience
of engaging in an exercise program. If an individual has not been exposed to a certain type of
exercise, they are unlikely to choose this option as a preference. Thus, among the largely
sedentary HNC samples, the most commonly preferred activity is walking, an activity that is
familiar to almost everyone (Jones & Courneya, 2002; Karvinen et al., 2011; Rogers, Markwell,
et al., 2009). It is likely that once HNC survivors are exposed to various exercise settings and
types through participation, more accurate (i.e. truer and more reflective of their experiences)
preferences can be identified.
Barriers to exercise among HNC survivors are especially important to investigate given
the unique and intensive nature of HNC treatments. One previous study investigated barriers
among a largely sedentary sample, 86% of whom had completed treatment (L. Q. Rogers et al.,
2008). The most prevalent barriers significantly associated with exercise levels were all
treatment related. Side effects such as dry mouth (xerostomia), fatigue, drainage of mouth,
difficulty eating (dysphagia), shortness of breath, and muscle weakness were all noted as barriers
to exercise participation (L. Q. Rogers et al., 2008). This finding is particularly significant, as the
mean time since treatment completion among this sample was 23± 62 months, demonstrating the
long lasting impact of treatment related side effects on physical well-being. The most common
non-treatment related barriers were reported by more than 39% of participants (L. Q. Rogers et
al., 2008); they include lack of interest, exercise not a priority, lack of equipment, exercise not in
routine, procrastination, and lack of self-discipline (L. Q. Rogers et al., 2008). While barriers
reported in a sedentary population are useful indicators of factors that inhibit program adoption,
examining barriers among a group with exercise experience may provide a more accurate
representation of factors that may inhibit exercise adherence and maintenance.
7
The ENHANCE Exercise Trial
In order to investigate the preferences and barriers of HNC survivors with exercise
experience, the current study utilized the participants of the Exercise and Nutrition for Head And
Neck Cancer (ENHANCE) trial.
The ENHANCE trial was a progressive resistance exercise training (RET) randomized
control trial for HNC survivors conducted at the University of Calgary from 2012-2014 (Capozzi
et al., 2012). Participants were randomized to receive the intervention either during or
immediately upon completion of radiation therapy (with possible combination therapies). See
Figure 1 for study format. The ENHANCE sample was composed of 60 hypo-pharyngeal,
nasopharyngeal, and laryngopharyngeal cancer survivors. The findings from the ENHANCE
study have been published and highlight the potential benefits and feasibility of lifestyle
interventions for HNC survivors (Capozzi et al., 2016). As participants significantly increased
their average recommended physical activity (PA) minutes from below to above recommended
weekly minutes across the intervention period (Capozzi et al., 2016), following up with this
sample allowed us to examine how preferences and barriers change with exercise exposure. This
is especially important given that, like many other cancer survivor populations, HNC survivors
generally report limited exercise participation and are largely ‘sedentary’ (Rogers et al., 2008).
8
Figure 1: ENHANCE Study Flow Chart (Capozzi et al., 2012)
The ENHANCE trial’s 12-week intervention included twice weekly group-based
resistance training sessions with individualized programs. Each participant had a personal
training session with the primary investigator (LC) to instruct them on their program prior to
attending group class. These classes initially took place at a hospital centre (Holy Cross
Hospital), but then were moved to a university (Thrive Centre) and community location
(Wellspring). Programs were primarily conducted with the use of balls and bands to facilitate
participants’ ability to exercise at home after program completion. Participants were assessed
every three months, with feedback and a report presented after each assessment. In addition to
the exercise classes, participants attended education sessions (weekly after exercise class) in
which they were taught about health behaviour change strategies (i.e. goal setting; Capozzi et al.,
2012). This was done in order to maximize long term adherence to an active lifestyle.
9
Methodology
Utilizing participants of the ENHANCE trial, the current study included a mixed-methods
approach to the assessment of HNC survivors’ exercise preferences and barriers. This contributes
to the existing literature as both studies examining preferences and barriers among this
population were conducted quantitatively, with participants from convenience samples
completing self-report questionnaires (Rogers et al., 2008; Rogers, Malone, et al., 2009). It was
felt that including a questionnaire in the current study would complement the existing research
by providing information regarding the prevalence of preferences and barriers among HNC
survivors who had been exposed to an exercise intervention. In addition, this format would allow
for the discovery of correlates to total number of barriers experienced, and therefore help to
identify HNC survivors who may benefit from additional behaviour change support.
While questionnaires allow for the discovery of information important to the research question,
they limit the ability of participants to indicate factors that may affect exercise participation not
included on the survey, and to describe the ways in which these factors influence them. Given
that the existing literature has been exclusively quantitative, having a qualitative component
would contribute to the current understanding of HNC survivors’ exercise perceptions, as
qualitative methods allow for the discovery of unexpected perspectives (Horn, 2011).
In order to capitalize on the strengths of both of these research methods, a mixed methods
approach was employed. This form strives to integrate both qualitative and quantitative
methodologies so as to allow for the discovery of richer data and therefore answer the research
question more effectively (Johnson, Onwuegbuzie, & Turner, 2007).
10
Statement of Contribution
The first author (CJ) performed all data analysis and wrote the majority of the enclosed
manuscript. The second author (AJD) conducted an independent coding of the transcripts and
then, along with all other authors (LC, WB, HL, NCR), provided ongoing feedback and
contributed to the editing of the manuscript.
11
Chapter Two: Manuscript
Jackson, C.L., Dowd, A.J., Capozzi, L.C., Bridel, W., Lau, H.Y., & Culos-Reed, S.N. (2016) A
Turning Point: Head and Neck Cancer Survivors’ Exercise Preferences and Barriers Before and
After Participation in an Exercise Trial. European Journal of Cancer Care (Under Review).
Background
Head and neck cancer (HNC) is the sixth most common cancer worldwide, accounting
for 3 to 5% of cancer diagnoses each year. It is predicted that there were 45,780 new cases of
head and neck cancer in the United States in 2014 alone (Siegel, Miller, & Jemal, 2015). The
demanding treatments and unique side effects experienced by HNC patients leave most survivors
with decreased quality of life well into survivorship (Gritz et al., 1999; S. N. Rogers et al., 2006).
Of particular concern is the development of cachexia, which may impact over 50% of advanced
head and neck cancer patients (Couch et al., 2007). Cachexia, or loss of greater than 5%
premorbid weight in less than 12 months, characterized by a substantial loss of lean mass, can
lead to decreased physical and psychological functioning, increased fatigue, and decreased
quality of life (Couch et al., 2007; Evans et al., 2008). There is growing evidence to support
exercise as a means to decrease fatigue, improve body composition, functional well-being, and
overall quality of life in HNC survivors. (Capozzi, Nishimura, et al., 2015). Additionally, there is
preliminary evidence to suggest that engaging in exercise may help the recovery, and possibly
diminish the severity, of head and neck cancer and treatment related side effects (Capozzi, Boldt,
et al., 2015; Capozzi et al., 2012; Lonbro et al., 2013).
Despite the growing evidence on the benefits of exercise, in a group of 59 HNC survivors
an average of 1.5 years after treatment, only 8.5% were found to be sufficiently active and over
half were sedentary (L. Q. Rogers et al., 2006). Importantly, these low participation rates are not
12
necessarily indicative of a lack of interest in exercise. Specifically, among 90 HNC survivors,
75% reported interest in an exercise program, yet only 51% felt capable of participating (Rogers,
Malone, et al., 2009). This indicates a need to close the gap between HNC survivor interest and
subsequent adoption of exercise. While current literature exists examining the preferences and
barriers of HNC survivors in convenience-based samples (that primarily consist of inactive
individuals), these findings may not reflect the preferences and barriers of survivors once they
gain exercise experience (Rogers et al., 2008). Investigation into the exercise preferences of
other tumour groups has revealed substantial differences in the findings among convenience
samples and exercise program participant samples (i.e., those with exercise experience).
Specifically, survey research conducted in largely sedentary samples found that most survivors
prefer unsupervised walking, outside or at home, alone or with family members (Karvinen et al.,
2011; Rogers et al., 2007; L. Q. Rogers et al., 2008; Rogers, Markwell, et al., 2009). Follow up
studies investigating the experiences and preferences of individuals who have participated in an
exercise intervention typically have found preferences for supervised, resistance training group
classes with fellow cancer survivors (Adamsen et al., 2012; Emslie et al., 2007; Rogers et al.,
2010). Previous studies investigating exercise barriers have found differences in barrier type and
frequency between tumour and demographic groups, suggesting that there may also be
differences in barriers dependent on other factors such as exercise experience and stage in the
cancer journey (Courneya et al., 2005; Hefferon et al., 2013; Loh et al., 2011; Ottenbacher et al.,
2011; Rogers et al., 2010). The investigation of these preferences and barriers, and how they
change with exercise experience and treatment status in HNC survivors, is therefore warranted.
Furthermore, it may be an important step in the provision of an optimally tailored exercise
program.
13
Objectives
The purpose of this mixed methods study was to examine the exercise preferences and
barriers of HNC survivors and explore how these factors changed with exercise exposure (in this
case, through an exercise intervention). This study included self-administered questionnaires and
follow-up semi-structured interviews. In addition, demographic, medical, and patient-reported
outcomes were assessed. It was hypothesized that before participation in an exercise trial the
predominant barriers would include lack of time, lack of enjoyment, and treatment-related
barriers (for those on treatment before participation). It was believed that after participation in an
exercise trial, reported barriers would change, and exercise levels would primarily be impacted
by lack of time and competing commitments. It was also hypothesized that preferences would
change with experience. Specifically, it was anticipated that before exercise experience,
participants would prefer walking and home-based exercise, and after engaging in the exercise
intervention, participants would prefer supervised, group-based, resistance training.
Methods
Participants.
Participants were recruited from the Exercise and Nutrition for Head And Neck Cancer
(ENHANCE) trial; a twelve-week, progressive, group resistance exercise training intervention
for HNC survivors undergoing, or who had recently completed, radiation therapy (with possible
adjuvant therapies). This trial involved twice weekly group circuit classes taught by a Certified
Exercise Physiologist (CEP) in urban hospital and community cancer centres (Capozzi et al.,
2012). This group was an ideal sample from which to examine the changes in exercise
preferences and barriers among HNC survivors since across the intervention period, participants
significantly increased their average recommended physical activity minutes from below to
14
above recommended weekly recommended minutes (Capozzi et al., 2016). Recruitment for the
ENHANCE trial began in 2012 and concluded in 2014. All previous ENHANCE participants
were provided information about the follow-up study either (a) by the primary investigator of the
initial study (LC) via email or at an information session, or (b) at follow up appointments with
their oncologists. Those who indicated interest were then contacted by the primary investigator
of the current study and were given the option to fill out questionnaires pertaining to their
exercise preferences and barriers, and/or to participate in semi-structured interviews exploring
their exercise experience. In order to maximize response rate, participants were sent reminder
emails two weeks after initial contact. All ENHANCE participants were able to participate
regardless of attendance rates during the intervention, promoting understanding of barriers that
impeded exercise participation across both successful and unsuccessful exercisers. Ethics
approval for this research was obtained from the Conjoint Health Research Ethics Board at the
University of Calgary, and all work performed conformed to the provisions of the Declaration of
Helsinki.
Questionnaires.
Questionnaires were provided to participants with a pre-addressed, stamped return
envelope. The self-report questionnaire included updated medical status and measures of current
exercise levels, quality of life (QOL), symptom severity, and questions on both pre and post-trial
exercise preferences and barriers. Instruments used for assessing exercise levels, symptom
severity, depression, and quality of life were the same as those used in previous ENHANCE
assessments to capitalize on participant familiarity (Capozzi et al., 2012).
15
Demographics.
Information on smoking and human papillomavirus (HPV) status, medical information
and demographics was collected in the previous study (Capozzi et al., 2012). In the current
protocol, participants were asked if any information on these measures had changed since the
completion of the ENHANCE trial. If the information had changed, participants were asked to
provide updated information.
Exercise levels.
Exercise levels were assessed using the Godin Leisure Score Index (LSI) of the Godin
Leisure Time Exercise Questionnaire (GLTEQ). This 3-item questionnaire is widely used and
has been successfully employed in previous HNC literature (Capozzi et al., 2016). As the
original GLTEQ focuses on aerobic activity levels and the ENHANCE trial consisted of
resistance training with some flexibility training, the GLTEQ was supplemented with additional
questions on the frequency and duration of resistance and flexibility training. Weekly
recommended exercise was calculated by multiplying vigorous activity minutes by two and
adding them to the moderate activity minutes [moderate + (vigorous x 2)]. Total activity minutes
were calculated by adding the minutes of all activities together (light + moderate + vigorous +
resistance training + flexibility; Schmitz et al., 2010).
Quality of Life.
Functional Assessment of Cancer Therapy (FACT) instruments were used to assess QOL.
To address HNC specific concerns the Functional Assessment of Cancer Therapy – Anemia
(FACT-An) was employed in addition to the FACT Head and Neck Symptom Index-22 (FHNSI22) for a total of 70 Likert scale items between the two instruments (Cella, 1997; List et al.,
1996).
16
Depression.
Depression was evaluated using the Centre for Epidemiological Studies Depression Scale
(CES-D). This 20-item questionnaire assesses the frequency of depressive symptoms
experienced (0-3; 0=rarely, 3= frequently) and has been widely used in cancer and exercise
studies. The CES-D scale has been established as a valid and reliable measure in cancer patients
(Hann, Winter, & Jacobsen, 1999).
Symptom severity.
The Edmonton Symptom Assessment System (ESAS) was used to evaluate the severity
of nine symptoms commonly experienced by cancer patients; including nausea, pain, fatigue, and
appetite, using a Likert scale of 0-10 (0=least possible, 10-most possible; Chang, Hwang, &
Feuerman, 2000). This assessment instrument has been validated for use in cancer populations
(Kirkova et al., 2006).
Preference and barriers.
Preferences and barriers questionnaires included in the package replicated those used in
previous HNC studies to allow for comparison across studies (Rogers et al., 2008; Rogers,
Malone, et al., 2009). Each questionnaire package included two preferences and barriers
batteries: one with instructions to complete according to participants’ exercise preferences and
barriers prior to participation in the ENHANCE trial, and one according to participants’ current
exercise preferences and barriers (i.e., following participation in the ENHANCE trial). The
preferences questionnaire included categories such as location and instructor characteristics, with
several options presented in each category. Participants were able to check off multiple responses
and results were calculated as percentage of participants to indicate ‘yes’ to each preference. The
barrier questionnaire presented 39 barriers (based off the barrier questionnaire in previous HNC
17
literature), in a 1-5 Likert scale format, for how frequently the barrier impacted their exercise
participation (1=never, 5=very frequently). All responses of “somewhat frequently” and “very
frequently” were combined as indicative of a significant barrier, and are presented as a percent of
total responses for that barrier.
Interviews.
Approximately one week after submitting their questionnaires, participants attended a
one-on-one, semi-structured interview conducted by the primary investigator (CJ), to further
explore preferences and barriers. Questionnaire responses on preferences and barriers were used
as probes throughout the interview, while maintaining a conversational interview format. This
approach allowed participants to discuss aspects of their experience not included in the
questionnaires. Interviews ranged from 25 to 80 minutes, were audio recorded and then
transcribed.
Data analysis.
Quantitative.
All quantitative results were analyzed using SPSS Version 22.0 (IBM Corp, 2013).
Barrier values and preferences for before and after participation were compared using a
McNemar’s Chi-Squared test (Agresti & Kateri, 2011). Correlations between the number of
barriers experienced, exercise levels, medical and demographic variables, QOL, and symptom
severity were calculated using Pearson’s correlation coefficient.
Qualitative.
All interviews were recorded and then transcribed verbatim by the primary investigator
(CJ) before being sent to participants to review and verify for accuracy. After the transcript had
been returned (or after one week of no response), the content was coded through an integrative
18
approach, and then analyzed using a thematic content analysis, using NVIVO 10 software (QSR
International, 2012). First, transcripts were grouped according to broad themes (i.e. preferences,
barriers, motivators) that had been established a priori. Each section was then reviewed by the
investigator to ensure familiarity with content, and coded into inductively derived emerging
subthemes (Bradley, Curry, & Devers, 2007). As new themes emerged during the coding
process, they were added and the coding continued in an iterative process. All transcripts were
systematically coded by the primary investigator before then being coded independently by the
second author (AJD). Discrepancies were defined as any section of text coded as two diverging
themes (i.e. ‘did not experience barriers’ compared to ‘location as a barrier’). Twenty eight
discrepancies occurred (1.97% of the total codes) All discrepancies were resolved through
discussion between the two coders (AJD and CJ). Quotes representative of each theme and
subtheme were extracted from the interviews and presented in results under numbers randomly
assigned to each participant.
Results
Subject characteristics.
Of the initial 60 ENHANCE participants, 47 were able to be contacted, of whom 22
agreed to participate (46.8% recruitment rate, 82% male, Mage=58.2 ± 5.6 years, Mtime since tx =27
± 6.5 months). As all ENHANCE participants were eligible to participate regardless of their
attendance to the exercise intervention, two self-described non-adherers (attended <50% of
classes) and one drop-out completed the questionnaires and interviews. Further participant
characteristics can be seen in Table 1. Of the 22 individuals who completed questionnaires, 18
attended the one-on-one interview.
19
Table 1. Subject characteristics (n=22)
Measure
Value
Percent (%)
Age
58.2 ± 5.6
NA
Time since diagnosis
(months)
Time since ENHANCE
(months)
27.9 ± 6.5
NA
22.09 ± 5.85
NA
5
22.7
15
68.2
1
1
4.5
4.5
Male
18
81.8
Meeting exercise
guidelines*
15
68.2
Minutes of aerobic
training per week**
193.3 ± 152.2
NA
Minutes of resistance
training per week
68.2 ±73.4
NA
Treatment type
Surgery, Chemotherapy
and Radiation
Radiation and
Chemotherapy
Radiation
Surgery and Radiation
Relationship status
Married
Divorced/Separated
Single
20
1
1
90.9
4.5
4.5
Education level
High School
Some University/College
Completed
University/College
Some or Completed
Graduate School
1
4
12
5
20
60
3
15
Annual income
<60,499
60,500 – 89,999
90,000 – 150,000
>150,000
2
3
8
5
10
16.7
44.4
27.8
HPV related cancers
Yes
17
77
20
*150min/week moderate to vigorous aerobic activity, 2-3 days/week of resistance training
(CSEP, 2013)
**Total moderate aerobic + vigorous aerobic minutes
*** HPV=human papilloma virus
Quantitative results.
Preferences.
Before ENHANCE participation.
Participants indicated that before ENHANCE participation, exercise preferences included
exercising at home (50%) or outdoors (68.2%), either alone (57.1%) or with a family member
(52.4%). Before participating in the ENHANCE program, less than half of the participants
indicated that they preferred to be supervised when exercising (47%) and for the trainer to be a
certified personal trainer (45%), while the majority indicated that their preferred program would
be of moderate intensity (76%), with a variety of exercises (52.4%), and an intermediate level of
instructor involvement (described as ‘generally lets me go at my own pace, but occasionally
pushes me’; 52.4%). See Table 2 for summary of findings.
After ENHANCE participation.
After ENHANCE participation, participants preferred exercising with other cancer
survivors (61.9%), in supervised exercise programs (66.7%) and in programs located at cancer
centres (42.9%), outdoors (61.9%), or at home (57.1%). Other commonly indicated responses
included a preference for exercise at a community centre (47%), to have instructors with
experience training cancer survivors (52.4%), and for exercising at a moderate intensity (81%).
There was an increase in the number of participants who indicated a preference for high intensity
exercise (33.1% before to 61.9% after), supervised programs (47.6% before to 66.7% after), and
hands on instructing (28% before to 38% after), but none were significant at p<.05. Significantly
more people indicated that they preferred to exercise at a cancer centre (28.6% increase, p=.031)
21
and with fellow cancer survivors (33.3% increase, p=.016) after ENHANCE participation.
Additionally, there was an increase in the number of participants who preferred to have trainers
who had experience training cancer survivors (32.4% increase, p=.039).
Table 2. Exercise preferences of HNC survivors before and after participation in an
exercise trial (n=22)
Program
Element
Before
After (%)
Participation
(%)
Significance (a)
Outdoors
Home
Work
Health club, YMCA,
YWCA, community centre
Cancer centre
Other
No preference
68.2
50.0
13.6
33.3
61.9
57.1
9.5
47.6
.500
1.000
1.000
.250
14.3
9.5
9.5
42.9
4.8
0.0
.031*
1.000
.500
Company
Alone
Family member
Coworker or friend
Cancer survivor
No preference
57.1
52.4
47.6
28.6
4.8
52.4
52.4
38.1
61.9
0.0
1.000
1.000
.727
.016*
1.000
Structure
Flexible
Structured
No preference
61.9
33.3
9.5
60.0
45.0
5.0
1.000
.687
1.000
Time of day
Morning
Afternoon
Evening
No preference
33.3
23.8
28.6
28.6
28.6
33.3
23.8
28.6
1.000
.500
1.000
1.000
Location
22
Program
Element
Before
Participation
(%)
After (%)
Significance (a)
Intensity
Low
Moderate
High
No preference
9.5
76.2
33.3
0.0
4.8
81.0
61.9
4.8
1.000
1.000
.070
1.000
Variability
Same each time
Different each time
No preference
23.8
52.4
31.8
33.3
61.9
23.8
.687
.727
.687
Instructor
characteristics
Minimal involvement
Intermediate involvement
High involvement
33.3
52.4
28.6
19.0
57.1
38.1
.250
1.000
.500
Instructor
qualifications
Kinesiology degree
CPT**
CEP***
Experience with CS****
Experience with clinical
populations
Experience with healthy
populations
No preference
40.0
45.0
35.0
20.0
0.0
57.1
47.6
42.9
52.4
4.8
.219
1.000
.500
.039*
1.000
15.0
14.3
1.000
35.0
23.8
.250
*Note: p <.05
**CPT: Certified Personal Trainer
***CEP: Certified Exercise Physiologist
****CS: Cancer survivors
Barriers.
Before ENHANCE participation.
The prevalence of each barrier before and after exercise participation is presented in
Table 3. The most prevalent barriers before participation in the exercise trial included exercise
not being part of a regular routine (59.1%), fatigue (40.9%), and exercise not being a priority
(42.9%).
23
After ENHANCE participation.
After participation in the ENHANCE program there was a significant decrease in the
total number of significant barriers reported (p=.001). Fatigue remained one of the most
prevalent barriers (14.3%), along with procrastination (19.0%), lack of self-discipline (19.0%),
and lack of time (14.3%). Statistically significant decreases were seen in the barriers of lack of
interest (p=.008), exercise not a priority (p=.039), and exercise not in routine (p=.004) after
ENHANCE participation.
Experiencing a higher number of barriers before ENHANCE participation was associated
with performing fewer minutes of moderate to vigorous exercise a week (r= -.455, p=.034),
increased symptom severity (ESAS; r=.491, p=.02), depression (CESD; r=.508, p=.016), and a
higher score on the anemia subscale(FACT-An; r=.608, p=.003). See Tables 4 and 5 for full
correlation results.
Experiencing more barriers after participation in the ENHANCE program was associated
with younger age (r= -.630, p=.004), reporting lower QOL (Fact-G; r=-.434, p=.049), and
engaging in fewer minutes of RET per week (r=-.434, p=.049).
Table 3. Exercise barriers of HNC survivors before and after participation in an exercise
trial (n=22)
Barrier
Before Participation (%) After Participation (%)
Significance
(a)
Not in routine
59.1
14.3
.004*
Not priority
42.9
9.5
.039*
Fatigue
40.9
14.3
.070
Lack of interest
36.4
0.0
.008*
Self-discipline
33.3
19.0
.375
Procrastination
31.8
19.0
.375
24
Barrier
Before Participation (%) After Participation (%)
Lack of time
27.3
14.3
Significance
(a)
.250
Drainage in mouth
23.8
0.0
.063
Decreased food intake
23.8
0.0
.063
Dry mouth or throat
22.7
9.5
.275
Enjoyment
22.7
4.8
.219
Inconvenient
19.0
9.5
.500
Muscle weakness
19.0
0.0
.125
Difficulty swallowing
18.2
0.0
.125
Lack of company
18.2
0.0
.125
Difficulty eating
18.2
0.0
.125
Pain
18.2
0.0
.125
Self-conscious about
appearance
13.6
0.0
.250
Weather
9.5
0.0
1.000
Lack of equipment
9.1
0.0
.500
Exercise is boring
9.1
4.8
1.000
Cough
9.1
0.0
.500
Difficulty
communicating
9.1
0.0
.500
Don’t feel confident in 9.1
exercise abilities
0.0
.500
*Note: p <0.05
Qualitative Results
Preferences
Interviews with the participants explored preferences for exercise format (considerations
such as program type, duration, inclusion of assessments), class environment (location, class
composition, instructor characteristics), and information delivery. Thematic content analysis
25
revealed three themes (ten subthemes) pertaining to exercise barriers and four themes (12
subthemes) pertaining to exercise preferences (See Appendix E for summary of themes).
When discussing preferences, it became evident that a substantial overlap exists between
the concepts of motivation and preferences (i.e. many individuals specified that they preferred a
particular format because it motivated them to exercise, or that because the specified format was
their preference they were more highly motivated to continue exercising). Thus, throughout the
preferences results, the term ‘motivators’ is used.
Before ENHANCE participation.
Before participating in the ENHANCE trial, most participants indicated that they
primarily exercised alone. For example, one participant said ‘So really, when I was exercising,
and I was very successful when I was doing it, I was walking. But I was on my own (F2)’.
Several participants noted that they had attended some group classes in the past, but were no
longer doing so at the point of diagnosis, either due to life becoming too busy or negative class
experiences. Others indicated that they had participated in team sports in their youth (e.g., ‘pretty
much played any sport I could… (M2))’, two of whom were still doing so at the point of
diagnosis. Overall, prior to participating in the ENHANCE trial, the majority of participants
preferred to exercise alone (regardless of prior exercise experiences).
After ENHANCE participation.
After completing their treatments and participation in the ENHANCE trial, participants
started to return to their usual exercise routines. While many of the participants continued to be
active, the activities that they engaged in diversified; ‘I did take up some different things. Yoga –
I had never done yoga before and it’s been a lifesaver (M7)’. Moreover, their preference for the
location of activity/activities changed; ‘If you were able to have a satellite locations, like
26
Wellspring, for the people who went after, I think you could do both [the cancer centre and
community locations] (M2)’.
Participants who had previously been active started to return to their usual activities,
although in some cases they were able to integrate RET into this routine. Eight of the participants
continued on with group classes offered specifically to cancer survivors, either at Wellspring (a
community cancer-support centre) or the Thrive Centre (a student-run fitness facility for cancer
survivors at the local university), or joined generic classes at a local fitness centre. Six regularly
engaged in walking, and nine started to practice yoga. Only one participant reported returning to
sedentary levels.
Ten participants emphasized that the group classes allowed for the transfer of important
information between patients on topics ranging from treatment recovery times, to side effect
experiences, to tips on how to minimize dry mouth and facilitate eating. ‘So it was very positive:
A. just to meet [other HNC survivors] and B. to talk to them and find out what I was in for and
what their experiences were and how they dealt with it (M14)’. This was found to be especially
important for several participants who emphasized that they felt they had been provided with
insufficient information regarding the treatment and cancer experience, leaving them ‘confused,
uninformed (M14)’. This is exemplified by one participated who stated ‘I would have
appreciated a little more openness about what I was inevitably going to face (M9)’. It was
specified that during treatment, most participants felt they benefitted from the HNC-only format,
but that after treatment a program open to all cancer survivors would be just as beneficial;
‘having all the types of cancer doesn't impede me at all, but at the very beginning it was very
nice to have just head and neck, you almost felt like you could relate more (F2)’. Nine
participants also mentioned that allowing the caregivers to participate in a group class was
27
beneficial not only for them, but for their loved ones, and was therefore a valued aspect of the
program. The majority of the participants also indicated that the group allowed them to form a
social support network, one that resembled a ‘family’, and that this was possible due to their
‘common purpose’ and ‘shared experience’. Overall, the enjoyment of a group class with their
peers—one that allowed for humour and a mutual understanding of the cancer experience—was
mentioned as an essential motivator for regular class attendance.
Being able to laugh about what I was experiencing, you know, have a good laugh
and make silly comments about it. Whether it was your hair or how you were
feeling or whatever it might be, that you could do that with the other participants
[made it fun] (F1).
It was also said that the group structure facilitated attendance due to the social
accountability to other class members. One participant mentioned that due to the inclusiveness of
the group, she knows she will be missed if she is not there and ‘that is what gets [her] out of bed
(F2)’. Ten of the participants highlighted that in addition to the fellow class members, the
instructor played an important role in class enjoyment. In order for an instructor to be successful,
it was felt they should have a strong knowledge of modifications due to the many comorbidities
and conditions present in the participants. Additional characteristics such as knowledge of, and
comfort with, working with cancer survivors, and a ‘genuine’ and ‘encouraging’ personality
were also mentioned as important traits.
Several participants indicated that variety was a key factor in their continued enjoyment
of exercise, especially those continuing with RET. Specific suggestions included integrating
machines, along with bands and dumb bells, and having some classes focused solely on body
weight resistance. Yoga became a preferred activity for several participants as they felt it
28
provided a ‘mind-body-spirit connection (M12)’. One participant mentioned the mindfulness of
yoga seemed to mimic the ‘deliberate and conscious’ effort now required for him to eat, as he
now has to ‘think about every mouthful, every bite, every swallow’, just as in yoga you have to
think about every breath and every move. He further explained the deliberate nature of yoga
saying: ‘in yoga, it forced me to be really conscious of different parts of my body and muscles,
and consciously relax them or tense them, whatever the case may be (M5)’.
While nine participants suggested that the hospital would be a convenient location for
exercise programming while on treatment, they also contended that this would not be the case for
post-treatment programming. If not already at the hospital for treatment, this location is
inconveniently located and has inaccessible, expensive parking. Additionally, four participants
indicated that they, or other patients they knew, had formed a strong negative association with
the cancer centre and would be reluctant to go for any non-medical reason.
Tom Baker [the Cancer Centre] is not, I know they fixed me up and everything,
but it’s just not a happy place for me. I look at the Thrive Centre as an
encouraging happy place, as well as Wellspring. Tom Baker was a necessity to
get me better but… it’s not a place that I would like to go to get better. Treatment
sure. Let's, let’s just keep treatments there. But as far as afterwards, let’s go to
encouraging, happy, fun places. No Tom Baker for me (M6).
When asked about alternative locations, participants typically indicated that a community
location that directly served cancer survivors would be preferred, especially if conveniently
located; ideally ‘in each quadrant of the city, in a place where there's free parking (F3)’.
29
Some even mentioned that having several locations spread throughout the city would facilitate
attendance. Other participants indicated that after they had recovered from their treatments they
preferred to return to exercising at home or at their local fitness centre.
There was consensus among participants that the exercises taught in ENHANCE were
appropriate and beneficial. However, two participants indicated that after the 12-weeks, when
they had regained some of their strength, it would have been beneficial to be introduced or
referred to other types of exercises, particularly for those who did not prefer circuit classes. All
participants indicated the program was a good option when on or immediately off treatment, but
some wanted to transition to sports or yoga and would like more information to facilitate this
transition. One participant suggested the following method:
Taking the patients and saying… ‘What would work for you?’ It was never that I
don’t want to exercise, it wasn’t thinking negatively about physical sport…it’s
getting up off your duff and finding the thing that works for you. And I would say
absolutely the structured exercises were great…But that as a program would be
uninteresting to me… Whereas the yoga is something that I really want to do. It
really, really helps me. I love doing it, I love everything about it. But I had to find
it (M9).
Overall, after engaging in the ENHANCE trial, participants typically continued to engage
in activities, particularly group resistance training, walking (or hiking) and yoga. Fellow cancer
survivors and caregivers were preferred exercise partners, accessible community locations (with
cancer specific programming) were the preferred location, and encouraging trainers with
experience training cancer survivors were the preferred instructors.
30
Barriers
During the interviews, participants described their exercise barriers and how these
concepts changed over time. The primary themes included lack of time, lack of motivation, and
cancer-specific side effects (fatigue, dry mouth, difficulty eating). The role each of these factors
had on exercise adherence shifted with treatment status and exercise experience.
Before ENHANCE participation.
Before engaging in ENHANCE, participants indicated that the primary barriers to
exercise included lack of motivation or enjoyment, lack of time, and feeling self-conscious or
anxious. For example, lack of motivation, described by some as ‘inertia’, often resulted in
procrastination and lack of consistency in their exercise regimes; ‘it was kind of on and off. I
would go in spurts where I would exercise and spurts where I didn’t. I had a hard time being
consistent (F3)’.
Participants indicated that lack of time had been a driving factor to their inactive lifestyle,
as they often found ‘life got in the way’. Reasons for lack of time included work schedules and
other commitments, and for some, the demands of raising children and volunteer commitments
limited the time they had to engage in activity. One mother talked about the sports and activities
of her children ‘taking up all her time’, and that this was just something ‘you sacrifice… being a
parent (F1)’. Several participants acknowledged that this lack of time stemmed from not
prioritizing exercise, as represented in the following quote from M12’s interview: ‘it was not that
I didn’t have the same amount of it as anybody else, I just didn’t use it as wisely as I could have’.
Eight of the people interviewed did not start participating in the trial until they had
completed their radiation therapy. Because of this, those who had not yet participated in
ENHANCE during treatment had additional ‘before participation’ barriers relating to their cancer
31
and treatment. These barriers fell into both the psychological and physical categories. Feeling
overwhelmed by the diagnosis and intensive treatments limited participants’ motivation to
engage in exercise as they were unable to ‘see any light at the end of the tunnel (M1)’.
In addition to the psychological barriers to exercise, those who participated in
ENHANCE only after their treatment completion, experienced substantial physical side effects
from their treatments. This inhibited their ability to exercise without the support, accountability,
and modifications provided by the study. Fatigue, weakness from the dramatic muscle loss, and
difficulty eating were all cited as barriers to exercise participation.
And not being able to eat very well. That caused, I mean, you eat and you get
water in. But you know then to tack some exercise on top and you can’t even get
the energy in the body in the first place, like there was a hard space of weeks there
(M12).
After ENHANCE participation.
After completing treatment and the ENHANCE trial and returning to prior routines and
responsibilities, participants indicated that lack of motivation and time resurfaced as primary
barriers. Two primary differences emerged from the before to after experience barriers. First,
several participants no longer reported feeling self-conscious or anxious about exercise, as
represented in the following quote from M12’s interview: ‘I don’t care what it looks like
anymore…what’s important is functional fitness and health’. Second, many participants
highlighted the long term effects from the cancer and its treatments, specifically fatigue. This
was especially significant given the mean time since trial participation, and therefore since
approximate treatment completion, was 22.09 ± 5.85 months. This suggests that fatigue and
other long term effects impacted participants’ exercise levels well over a year past treatment.
32
After ENHANCE participation, six interviewees noted that time for exercise was limited,
as they returned to work and family responsibilities and it became more challenging to carve
time out of the day for exercise. A particularly challenging timeframe was immediately after
completing treatment, when many participants went on vacations with their loved ones, or visited
their family. Participants indicated that they struggled to maintain exercise when in different
cities without access to facilities and trainers, although they often reported high levels of walking
while travelling.
Getting busy again with work and chorus and all of those things. Sometimes it
made it a little tough to come Mondays knowing I still have to practice those two
songs before Tuesdays. Or especially with work, letting myself get so busy (F2).
In May we decided to drive down to Toronto and Ottawa to visit my family
[be]cause I kept telling them I’m fine, I’m fine, but nobody had seen me right, so
people needed to see me alive and well (M3).
Several participants indicated that after the trial finished, they struggled to maintain an
exercise routine without the structured support and accountability provided by the trial format.
As one participant said; ‘I think my old bad habits have come back. I can procrastinate (F4).’
Contributing to the numerous other barriers to exercise experienced by participants were
the physical limitations they had, specifically cancer-related fatigue, although comorbidities such
as osteoarthritis were also frequently mentioned. All participants discussed experiencing some
amount of fatigue throughout their treatment, ranging from minor to debilitating. Several
participants indicated that they still experience this ‘deep’ fatigue now and that it continues to
play a role in their exercise participation. They indicated that while fatigue acts as a barrier to
33
exercise, it also serves as a motivator. Specifically, participants stated that the structured program
forced them to exercise despite fatigue, and after this participation they experienced increased
energy levels and fatigue reduction. Having experienced this benefit encouraged further
participation.
But I think that’s one of the places for being involved in the program and being
tired. If I’d been on my own and I didn’t have a program saying you’re supposed
to do this throughout the week, I suspect I would probably would not have
bothered with some of the [exercise], just because I was tired (M13).
During ENHANCE participation.
While the research question focused on the participants’ perspectives before and after
participating in the trial, in the interviews many participants discussed their experience during
the trial. Many of the barriers experienced before and after participation in the ENHANCE trial
played a role during participation as well, however, there were additional concerns relating to
their treatments. Barriers experienced primarily during ENHANCE participation included lack of
time due to difficulty eating, adjusting to new capabilities, and feeling too ill and fatigued from
treatments.
Several participants indicated that due to the cumulative nature of treatments, fatigue,
nausea, and weakness were at a crux during the last week of treatment and first weeks of
recovery. ‘There were times when I didn’t come to class. Especially during that one month
period right at the end of treatment and it was cumulative (M3)’. In addition, several participants
highlighted that due to treatment, their ability to eat was severely compromised, which is
consistent with findings previously reported in the HNC literature (Lonbro, Petersen, Andersen,
34
& Johansen, 2015). Participants further noted that this affected their ability to partake in exercise
class for two primary reasons—they felt uncomfortable expending the calories that were so
challenging to take in, and eating became so time consuming a task that they felt it impossible to
set aside time in their day for exercise. This is exemplified by the following quote from
participant M2; ‘The classes ended up being held were an hour away from me. So that's two
hours, and when it takes two hours out of your time to eat that's a big thing (M2)’.
Several additional psychological barriers played a role at the beginning of the group
class, rather than before or after their participation. These included feeling intimidated by the
group environment and adjusting to new capabilities; ‘At the beginning, knowing that I was so
much bigger and so much further behind than everyone sometimes made it a little tough to come
in (F2)’.
Discussion
The purpose of this study was to investigate the factors affecting exercise participation
among HNC survivors, and how these factors change after gaining exercise experience in an
exercise trial. Several significant changes were highlighted in both the questionnaires and the
interviews, providing insight into how to best tailor exercise programs for HNC survivors.
Specifically, changes from before to after exercise participation included increased interest in
exercising with fellow cancer survivors, exercising in a cancer centre, being supervised by an
individual who has experience working with cancer survivors, and a decreased number of
barriers experienced, although a number of barriers remained after exercise participation.
The results of this study revealed that while the overall number and impact of barriers
decreased from before to after ENHANCE participation, fatigue and lack of time continued to
play a role after exercise exposure and treatment completion. The interview responses also
35
indicated that these barriers were significantly compounded by accessibility issues to the exercise
class location. Therefore, improving location convenience may improve attendance and
simultaneously diminish the time commitment required to attend a class, which was a significant
barrier (especially during treatment). Location convenience could be improved either by (a)
having multiple locations with programming available, or (b) for those on treatment, having
exercise programming available at the cancer centre. This would be convenient for those HNC
survivors still on treatment, as they are there for their daily radiation treatments, and thus would
help to eliminate the ‘no time’ barrier. It is important to note that participants agreed that once
treatment is completed, an offsite location would be strongly preferred due to the negative
connotation of the cancer centre (i.e., not wellness focused, but rather associated with treatment
and its negative side effects) and the desire to return to normal.
Second, the majority of participants indicated that the group format was a critical aspect
of an exercise program. This environment created a positive atmosphere in which participants
were able to discuss their experiences with treatments, share tips on ways to minimize side
effects and use humour to reframe their cancer experience throughout their recovery. This
knowledge sharing was especially important given that many participants reported having
received a paucity of information regarding recovery time, intensity of treatments, and tips to
improve recovery. The enjoyment that participants experienced from the social atmosphere was
reported as a factor that resulted in the decreases in ‘lack of interest’ and ‘lack of motivation’ as
barriers. When discussing adherence to the program, many participants indicated that the
enjoyment that arose from the social environment, and the sense of accountability to the
instructors and fellow participants, were motivators for them returning. This suggests that having
group classes available to HNC survivors during the most challenging parts of the cancer journey
36
(treatment and recovery) may optimize participation levels. That said, given the cumulative
nature of treatment, it is suggested that for individuals near the end of treatment programs be
flexible and include a check-in policy after several missed classes.
Finally, barriers were negatively correlated with age (being younger was associated with
more barriers), minutes of RET training a week (less RET associated with more barriers), and
QOL scores. This suggests that HNC survivors engaging in regular RET, who are older and
report a higher QOL are less likely to experience barriers to exercise. The negative correlation
between age and barriers experienced may be a result of the diminished work and family
commitments among those who are retired, thus time constraints are less of a barrier.
It is important to note that this study was conducted an average of 22.1 ±5.8 months post
ENHANCE study completion. This means that despite being two years post trial, participants
had maintained an increased level of interest, routine, and prioritization for exercise participation
compared to before participation in the ENHANCE trial.
Strengths and limitations.
This is the first mixed methods study investigating exercise preferences and barriers
among a group of HNC survivors who have participated in an exercise intervention. Results
provide insight into considerations for exercise program design for HNC survivors, specifically
in both the exercise adoption and maintenance phases. This study had a number of strengths that
make novel contributions to the existing literature. First, the primary investigator (CJ) who
conducted the interviews had been a research assistant on the initial intervention study and
assisted with the exercise classes and thus she had a thorough understanding of the intervention.
Additionally, participants’ familiarity with the interviewer may have increased their comfort,
allowing them to open up about emotionally demanding topics such as depression and anxiety.
37
However, it is recognized that this pre-existing relationship may have contributed to some bias in
the results, particularly regarding instructor preferences. To mediate this, when asking about
instructor preferences, the question was framed as a hypothetical (i.e., What characteristics
would you want in an instructor?), rather than asking about participants’ experiences with any
specific instructor (i.e., What were your thoughts on the ENHANCE instructors?).
Second, the mixed methods approach in this study is an important strength, allowing for a
deeper investigation of the barriers and exercise preferences of HNC survivors. Specifically, the
quantitative questionnaire findings provided an understanding of the prevalence of barriers and
preferences, and the qualitative interviews enabled the exploration of additional factors (e.g.
reasons for preferring group classes) as well as deeper understanding of the reasoning behind the
participants’ perspectives.
While this study contributes to the literature, it does present several limitations that are
worth highlighting. One is the inherent risk of self-selection bias in follow-up studies:
individuals who have strong opinions or who are invested in the program may be more likely to
participate. Efforts to reduce this potential bias included recruiting at the hospital and the
inclusion of ENHANCE program dropouts. One dropout and two non-adherers (attended <50%
of classes) participated in the interviews, providing a diversity of experiences and perspectives
on preferences and barriers toward exercise.
Another limitation of the study is its retrospective nature. Several participants
acknowledged that they struggled to remember some of the more specific details about the
intervention as 1–3 years had passed. However, it also provided the opportunity to investigate
exercise barriers and preferences several years after exercise intervention participation, which is
38
far longer than the typical 6-12 month follow up. The retrospective design therefore provided
insight into the long-term effects of interventions on current exercise preferences and barriers.
Future directions.
Clinical implications.
Cancer-based group classes should be available to HNC survivors while on treatment at
the hospital or other convenient location, and after treatment completion in community locations.
Group classes should utilize a variety of equipment and exercises, and provide assessments for
ongoing feedback. Participants also suggested that having a variety of classes available for
different fitness and ability levels may help to minimize feelings of anxiety and facilitate the
tailoring of exercise prescription.
The group environment provides the additional benefit of social support. In order to
capitalize on this benefit, instructors should encourage a social environment and the transfer of
information by introducing all participants and allowing for informal discussion at the beginning
or end of each class. As participants transition out of recovery and into survivorship, it is
important to continue having these group classes available, in addition to providing the support
and resources necessary for those to transition to other exercise settings in their community.
Given the positive association between symptoms and number of exercise barriers experienced,
it is suggested that HNC survivors with high symptom severity, anemia, and depression should
be provided additional exercise support. Support may be in the form of follow-ups with the
exercise specialist or education on behaviour change skills and self-regulatory strategies.
A critical step in the health behaviour change process is patient education. Patient
preferences change after exposure to an exercise program, and for many newly diagnosed,
presentation of a “group-based class” may not be what they think they want. In order to build
39
interest, it will be important to inform patients that these programs have been designed based on
knowledge provided by other HNC survivors on what they found most enjoyable and beneficial.
We posit that by creating programs in accordance with the exercise preferences and barriers of a
group of experienced and diverse HNC survivors, and by informing survivors of the tailored
nature of the design, program attendance and adherence will be optimized.
Future research.
Throughout the ENHANCE intervention, caregivers expressed interest in participating in
the classes along with their partners, something that was echoed by participants in the follow-up
study. Because of this, and in light of a current study investigating exercise in cancer caregivers
(Cuthbert, King-Shier, Tapp et al., In Progress), we are currently conducting interviews with
ENHANCE caregivers. These interviews will provide insight into the perceived benefits or
issues associated with exercise classes composed of survivors and caregivers. This information
may be important to consider when designing future exercise programs.
Conclusion
The findings from this study highlight key considerations for the design and
implementation of an exercise program for HNC survivors. This group is unique in its symptom
burden, intensive treatments and dramatic muscle loss (Gritz et al., 1999). As such, it is critical
that exercise programs are made available to patients in order to optimize recovery time and
return to function. In order for such programs to be effective, they must be designed to minimize
barriers and maximize facilitators to enhance long-term adherence to an active lifestyle.
40
References
Agresti, A., & Kateri, M. (2011). Categorical data analysis (pp. 206-208). Springer Berlin
Heidelberg.
Adamsen, L., Stage, M., Laursen, J., Rorth, M. & Quist, M. 2012. Exercise and relaxation
intervention for patients with advanced lung cancer: a qualitative feasibility study. Scand
J Med Sci Sports, 22, 804-15.
Bradley, E. H., Curry, L. A. & Devers, K. J. 2007. Qualitative data analysis for health services
research: developing taxonomy, themes, and theory. Health Serv Res, 42, 1758-72.
Capozzi, L. C., Boldt, K. R., Lau, H., Shirt, L., Bultz, B. & Culos-Reed, S. N. 2015a. A clinicsupported group exercise program for head and neck cancer survivors: managing cancer
and treatment side effects to improve quality of life. Support Care Cancer, 23, 1001-7.
Capozzi, L. C., Lau, H., Reimer, R. A., Mcneely, M., Giese-Davis, J. & Culos-Reed, S. N. 2012.
Exercise and nutrition for head and neck cancer patients: a patient oriented, clinicsupported randomized controlled trial. BMC Cancer, 12, 446.
Capozzi, L. C., Mcneely, M. L., Lau, H. Y., Reimer, R. A., Giese-Davis, J., Fung, T. S. & CulosReed, S. N. 2016. Patient-reported outcomes, body composition, and nutrition status in
patients with head and neck cancer: Results from an exploratory randomized controlled
exercise trial. Cancer.
Capozzi, L. C., Nishimura, K. C., Mcneely, M. L., Lau, H. & Culos-Reed, S. N. 2015b. The
impact of physical activity on health-related fitness and quality of life for patients with
head and neck cancer: a systematic review. Br J Sports Med.
Cella, D. 1997. The Functional Assessment of Cancer Therapy-Anemia (FACT-An) Scale: a new
tool for the assessment of outcomes in cancer anemia and fatigue. Semin Hematol, 34,
13-9.
Chang, V. T., Hwang, S. S. & Feuerman, M. 2000. Validation of the Edmonton Symptom
Assessment Scale. Cancer, 88, 2164-71.
Couch, M., Lai, V., Cannon, T., Guttridge, D., Zanation, A., George, J., Hayes, D. N., Zeisel, S.
& Shores, C. 2007. Cancer cachexia syndrome in head and neck cancer patients: part I.
Diagnosis, impact on quality of life and survival, and treatment. Head Neck, 29, 401-11.
Courneya, K. S., Friedenreich, C. M., Quinney, H. A., Fields, A. L., Jones, L. W., Vallance, J. K.
& Fairey, A. S. 2005. A longitudinal study of exercise barriers in colorectal cancer
survivors participating in a randomized controlled trial. Ann Behav Med, 29, 147-53.
Emslie, C., Whyte, F., Campbell, A., Mutrie, N., Lee, L., Ritchie, D. & Kearney, N. 2007. 'I
wouldn't have been interested in just sitting round a table talking about cancer'; exploring
the experiences of women with breast cancer in a group exercise trial. Health Educ Res,
22, 827-38.
Evans, W. J., Morley, J. E., Argiles, J., Bales, C., Baracos, V., Guttridge, D., Jatoi, A., KalatarZadeh, K., Lochs, H., Mantovani, G., Marks, D., Mitch, W. E., Muscaritoli, M., Najand,
A., Ponikowski, P., Rossi Fanelli, F., Schambelan, M., Schols, A., Schuster, M., Thomas,
D., Wolfe, R. & Anker, S. D. 2008. Cachexia: a new definition. Clin Nutr, 27, 793-9.
Gandhi, A. K., Roy, S., Thankar, A., Sharma, A. & Mohanti, B. K. 2014. Symptom Burden and
Quality of Life in Advanced Head and Neck Cancer Patients: AIIMS Study of 100
Patients. Indian J Palliat Care, 20, 189-93.
41
Gritz, E. R., Carmack, C. L., De Moor, C., Coscarelli, A., Scharcherer, C. W., Meyers, E. G. &
Abemayor, E. 1999. First year after head and neck cancer: quality of life. J Clin Oncol,
17, 352-60.
Hann, D., Winter, K. & Jacobsen, P. 1999. Measurement of depressive symptoms in cancer
patients: evaluation of the Center for Epidemiological Studies Depression Scale (CES-D).
J Psychosom Res, 46, 437-43.
Hefferon, K., Murphy, H., McLeod, J., Mutrie, N. & Campbell, A. 2013. Understanding barriers
to exercise implementation 5-year post-breast cancer diagnosis: a large-scale qualitative
study. Health Educ Res, 28, 843-56.
Karvinen, K. H., Raedeke, T. D., Arastu, H. & Allison, R. R. 2011. Exercise programming and
counseling preferences of breast cancer survivors during or after radiation therapy. Oncol
Nurs Forum, 38, E326-34.
Kirkova, J., Davis, M. P., Walsh, D., Tiernan, E., O'Leary, N., LeGrand, S. B., Lagman, R. L. &
Russell, K. M. 2006. Cancer symptom assessment instruments: a systematic review. J
Clin Oncol, 24, 1459-73.
List, M. A., D'Antonio, L. L., Cella, D. F., Siston, A., Mumby, P., Haraf, D. & Vokes, E. 1996.
The Performance Status Scale for Head and Neck Cancer Patients and the Functional
Assessment of Cancer Therapy-Head and Neck Scale. A study of utility and validity.
Cancer, 77, 2294-301.
Loh, S. Y., Chew, S. L. & Lee, S. Y. 2011. Barriers to exercise: perspectives from multiethnic
cancer survivors in Malaysia. Asian Pac J Cancer Prev, 12, 1483-8.
Lonbro, S., Dalgas, U., Primdahl, H., Johansen, J., Nielsen, J. L., Aagaard, P., Hermann, A. P.,
Overgaard, J. & Overgaard, K. 2013. Progressive resistance training rebuilds lean body
mass in head and neck cancer patients after radiotherapy--results from the randomized
DAHANCA 25B trial. Radiother Oncol, 108, 314-9.
Lonbro, S., Petersen, G. B., Andersen, J. R. & Johansen, J. 2015. Prediction of critical weight
loss during radiation treatment in head and neck cancer patients is dependent on BMI.
Support Care Cancer.
Ottenbacher, A. J., Day, R. S., Taylor, W. C., Sharma, S. V., Sloane, R., Snyder, D. C., Kraus,
W. E. & Demark-Wahnefried, W. 2011. Exercise among breast and prostate cancer
survivors--what are their barriers? J Cancer Surviv, 5, 413-9.
Rogers, L. Q., Courneya, K. S., Robbins, K. T., Malone, J., Seiz, A., Koch, L. & Rao, K. 2008a.
Physical activity correlates and barriers in head and neck cancer patients. Support Care
Cancer, 16, 19-27.
Rogers, L. Q., Courneya, K. S., Shah, P., Dunnington, G. & Hopkins-Price, P. 2007. Exercise
stage of change, barriers, expectations, values and preferences among breast cancer
patients during treatment: a pilot study. Eur J Cancer Care (Engl), 16, 55-66.
Rogers, L. Q., Courneya, K. S., Verhulst, S., Markwell, S. J. & McAuley, E. 2008b. Factors
associated with exercise counseling and program preferences among breast cancer
survivors. J Phys Act Health, 5, 688-705.
Rogers, L. Q., Malone, J., Rao, K., Courneya, K. S., Fogleman, A., Tippey, A., Markwell, S. J. &
Robbins, K. T. 2009a. Exercise preferences among patients with head and neck cancer:
prevalence and associations with quality of life, symptom severity, depression, and rural
residence. Head Neck, 31, 994-1005.
42
Rogers, L. Q., Markwell, S. J., Verhulst, S., McAuley, E. & Courneya, K. S. 2009b. Rural breast
cancer survivors: exercise preferences and their determinants. Psychooncology, 18, 41221.
Rogers, L. Q., Vicari, S. & Courneya, K. S. 2010. Lessons learned in the trenches: facilitating
exercise adherence among breast cancer survivors in a group setting. Cancer Nurs, 33,
E10-7.
Rogers, S. N., Miller, R. D., Ali, K., Minhas, A. B., Williams, H. F. & Lowe, D. 2006. Patients'
perceived health status following primary surgery for oral and oropharyngeal cancer. Int
J Oral Maxillofac Surg, 35, 913-9.
Schmitz, K. H., Courneya, K. S., Matthews, C., Demark-Wahnefried, W., Galvao, D. A., Pinto,
B. M., Irwin, M. L., Wolin, K. Y., Segal, R. J., Lucia, A., Schneider, C. M., Von
Gruenigen, V. E., Schwartz, A. L. & American College of Sports, M. 2010. American
College of Sports Medicine roundtable on exercise guidelines for cancer survivors. Med
Sci Sports Exerc, 42, 1409-26.
Siegel, R. L., Miller, K. D. & Jemal, A. 2015. Cancer statistics, 2015. CA Cancer J Clin, 65, 529.
43
Chapter Three: Conclusions and Future Directions
This study provided insight into how HNC survivors’ perspectives on exercise,
specifically their preferences and barriers, change with exercise exposure, thereby providing
direction for effective exercise program design.
The Role of Education
As previously mentioned, education will play an integral role in ensuring that exercise
programs tailored to the preferences of HNC survivors are successful in reaching the target
population. Given that exercise preferences while inactive do not match those after exercise
exposure (the preferences off which programs will be designed), it is critical to pair patient
education with the presentation of available exercise resources. This will serve to advise patients
that they are likely to experience greater enjoyment and benefits out of the tailored programs,
even if the programs do not initially seem to be an appropriate fit or aren’t “what they think they
want”. In addition to educating patients about the changes in preferences that they may
experience, it is important to inform them of the typical changes in exercise barriers. Part of
behaviour change education is the discussion of barriers that the individual has experienced in
the past and may experience in the future, as well as a discussion of potential strategies to
minimize the impact of these barriers. This study found that prior to trial participation, the most
common barriers experienced among the participants were the same as those experienced by a
sample of largely sedentary HNC patients (Rogers et al., 2008). After participating in the trial,
the overall number of barriers experienced decreased, and the impact of commonly experienced
barriers on exercise participation also decreased. This suggests that engaging in exercise,
especially when paired with health behaviour change education, may have long term benefits on
the ease with which a cancer survivor can sustain exercise behaviour. This is supported by the
44
current activity levels of the participants, as 68.2% are currently meeting exercise guidelines an
average of 22.1 ±5.8 months after their participation in the ENHANCE trial. Additionally,
educating patients about other HNC survivors who have engaged in a similar program, and were
capable of exercising despite having no previous exercise history, may improve exercise selfefficacy (through vicarious experience) so more than 51% feel capable of pursuing an active
lifestyle.
Educating patients on the treatment experience may also play a role in motivating more
HNC survivors to engage in exercise. A number of the participants emphasized that the treatment
information given to them prior to radiation underestimated the magnitude and duration of
impact that treatment would have on their health and well-being. It was also noted that a strong
motivator for participation was the desire to have ownership in their health status and to avoid
the side effects they had heard about through support groups. It may be concluded that by
providing patients with accurate information regarding their treatment, while simultaneously
providing them with a medium through which they can have some control and take ownership in
their health, may help them move more effectively through their treatment journey.
Implications for Health Professionals
Participants indicated that physicians presenting exercise as a crucial part of their
treatment would have facilitated their adherence, and likely would have increased the number of
patients interested in participating. Additionally, it was suggested that physicians reminding
patients of the program throughout the course of their regular meetings would help to prime them
for participation as well as reinforce the importance of activity in the recovery process. In order
for this to occur, it is important that the physicians have confidence in the safety and
effectiveness of the program as well as an easy referral process. This would ideally be facilitated
45
via an exercise professional in clinic for recruitment, screening, and triaging of patients into
appropriate programming or providing alternative resources. Additionally, requiring that
personal trainers attend a Cancer and Exercise course (Culos-Reed, 2014) prior to leading
programs for this population would serve to diminish physician and participant fears of injury
and ensure that participants feel safe and secure in class.
Participant Experiences During the ENHANCE Trial
Throughout the interviews, rich data was obtained regarding participants’ experiences
during the exercise intervention. Given recent literature explaining how experiences and attitudes
towards exercise are strong predictors of exercise adherence (Taylor, 2013), pursuing a further
understanding of participants’ experience in the trial is an important step towards determining
how to best create positive exercise experiences for HNC survivors. Looking at this time frame
will also provide more information on the reasons behind exercise preferences of participants, as
these were likely influenced by their experience exercising during the trial. To further understand
the current preferences and barriers, and to explore the participants’ experiences during the
intervention, the authors of the current manuscript will be qualitatively examining the exercise
experiences of ENHANCE participants during the trial, as a complement to the study presented
here.
Caregivers’ Program Perceptions and Experiences
As previously mentioned, throughout the course of the ENHANCE intervention,
caregivers started to participate in the exercise classes. This occurred naturally as numerous
participants required caregivers to drive them to classes, so rather than sitting idle they were
invited to join in. Interview findings suggest that survivors perceived this involvement as a
beneficial aspect of the program. Given that caregivers have been found to engage in less health
46
behaviours and to be at a higher risk of developing health conditions than their age and sexmatched counterparts, they stand to benefit greatly from engaging in regular exercise. It was for
these reasons that investigating caregiver participation in HNC exercise programs was seen as an
important step. Information garnered from caregiver interviews may serve to inform how HNC
programs are presented to caregivers, and how exercise programs are designed for caregivers
themselves.
The findings of this study provide insight into how to best design exercise programs for
HNC patients and survivors, so as to maximize the number of survivors engaging in exercise.
Increasing survivors’ exercise levels will result in more individuals experiencing improved
physical and psychological functioning and quality of life throughout survivorship.
47
References
Adamsen, L., Stage, M., Laursen, J., Rorth, M., & Quist, M. (2012). Exercise and relaxation
intervention for patients with advanced lung cancer: a qualitative feasibility study. Scand
J Med Sci Sports, 22(6), 804-815. doi: 10.1111/j.1600-0838.2011.01323.x
Agresti, A., & Kateri, M. (2011). Categorical Data Analysis. In M. Lovric (Ed.), International
Encyclopedia of Statistical Science (pp. 206-208): Springer Berlin Heidelberg.
Anderson, A. S., Caswell, S., Wells, M., Steele, R. J., & Macaskill, S. (2010). "It makes you feel
so full of life" LiveWell, a feasibility study of a personalised lifestyle programme for
colorectal cancer survivors. Support Care Cancer, 18(4), 409-415. doi: 10.1007/s00520009-0677-4
Bjordal, K., Kaasa, S., & Mastekaasa, A. (1994). Quality of life in patients treated for head and
neck cancer: a follow-up study 7 to 11 years after radiotherapy. Int J Radiat Oncol Biol
Phys, 28(4), 847-856.
Bradley, E. H., Curry, L. A., & Devers, K. J. (2007). Qualitative data analysis for health services
research: developing taxonomy, themes, and theory. Health Serv Res, 42(4), 1758-1772.
doi: 10.1111/j.1475-6773.2006.00684.x
Capozzi, L. C., Boldt, K. R., Lau, H., Shirt, L., Bultz, B., & Culos-Reed, S. N. (2015). A clinicsupported group exercise program for head and neck cancer survivors: managing cancer
and treatment side effects to improve quality of life. Support Care Cancer, 23(4), 10011007. doi: 10.1007/s00520-014-2436-4
Capozzi, L. C., Lau, H., Reimer, R. A., McNeely, M., Giese-Davis, J., & Culos-Reed, S. N.
(2012). Exercise and nutrition for head and neck cancer patients: a patient oriented,
clinic-supported randomized controlled trial. BMC Cancer, 12, 446. doi: 10.1186/14712407-12-446
Capozzi, L. C., McNeely, M. L., Lau, H. Y., Reimer, R. A., Giese-Davis, J., Fung, T. S., &
Culos-Reed, S. N. (2016). Patient-reported outcomes, body composition, and nutrition
status in patients with head and neck cancer: Results from an exploratory randomized
controlled exercise trial. Cancer. doi: 10.1002/cncr.29863
Capozzi, L. C., Nishimura, K. C., McNeely, M. L., Lau, H., & Culos-Reed, S. N. (2015). The
impact of physical activity on health-related fitness and quality of life for patients with
head and neck cancer: a systematic review. Br J Sports Med. doi: 10.1136/bjsports-2015094684
Cella, D. (1997). The Functional Assessment of Cancer Therapy-Anemia (FACT-An) Scale: a
new tool for the assessment of outcomes in cancer anemia and fatigue. Semin Hematol,
34(3 Suppl 2), 13-19.
Chang, V. T., Hwang, S. S., & Feuerman, M. (2000). Validation of the Edmonton Symptom
Assessment Scale. Cancer, 88(9), 2164-2171.
Corp, I. (2013). IBM SPSS Statistics for Windows (Version 22.0). Armonk, NY.
Couch, M., Lai, V., Cannon, T., Guttridge, D., Zanation, A., George, J., . . . Shores, C. (2007).
Cancer cachexia syndrome in head and neck cancer patients: part I. Diagnosis, impact on
quality of life and survival, and treatment. Head Neck, 29(4), 401-411. doi:
10.1002/hed.20447
Courneya, K. S., Friedenreich, C. M., Quinney, H. A., Fields, A. L., Jones, L. W., Vallance, J.
K., & Fairey, A. S. (2005). A longitudinal study of exercise barriers in colorectal cancer
48
survivors participating in a randomized controlled trial. Ann Behav Med, 29(2), 147-153.
doi: 10.1207/s15324796abm2902_9
Courneya, K. S., Katzmarzyk, P. T., & Bacon, E. (2008). Physical activity and obesity in
Canadian cancer survivors: population-based estimates from the 2005 Canadian
Community Health Survey. Cancer, 112(11), 2475-2482. doi: 10.1002/cncr.23455
Courneya, K. S., McKenzie, D. C., Reid, R. D., Mackey, J. R., Gelmon, K., Friedenreich, C. M.,
. . . Segal, R. J. (2008). Barriers to supervised exercise training in a randomized
controlled trial of breast cancer patients receiving chemotherapy. Ann Behav Med, 35(1),
116-122. doi: 10.1007/s12160-007-9009-4
Culos-Reed, S. N., Capozzi, L.C., Daroux-Cole, L.M. (2014). Cancer and Exercise: Training
Manual for Fitness Professionals. University of Calgary.
Emslie, C., Whyte, F., Campbell, A., Mutrie, N., Lee, L., Ritchie, D., & Kearney, N. (2007). 'I
wouldn't have been interested in just sitting round a table talking about cancer'; exploring
the experiences of women with breast cancer in a group exercise trial. Health Educ Res,
22(6), 827-838. doi: 10.1093/her/cyl159
Evans, W. J., Morley, J. E., Argiles, J., Bales, C., Baracos, V., Guttridge, D., . . . Anker, S. D.
(2008). Cachexia: a new definition. Clin Nutr, 27(6), 793-799. doi:
10.1016/j.clnu.2008.06.013
Fearon, K., Strasser, F., Anker, S. D., Bosaeus, I., Bruera, E., Fainsinger, R. L., . . . Baracos, V.
E. (2011). Definition and classification of cancer cachexia: an international consensus.
Lancet Oncol, 12(5), 489-495. doi: 10.1016/S1470-2045(10)70218-7
Ferlay, J., Shin, H. R., Bray, F., Forman, D., Mathers, C., & Parkin, D. M. (2010). Estimates of
worldwide burden of cancer in 2008: GLOBOCAN 2008. International Journal of
Cancer, 127(12), 2893-2917. doi: 10.1002/ijc.25516
Fong, D. Y., Ho, J. W., Hui, B. P., Lee, A. M., Macfarlane, D. J., Leung, S. S., . . . Cheng, K. K.
(2012). Physical activity for cancer survivors: meta-analysis of randomised controlled
trials. BMJ, 344, e70. doi: 10.1136/bmj.e70
Gotte, M., Kesting, S., Winter, C., Rosenbaum, D., & Boos, J. (2014). Experience of barriers and
motivations for physical activities and exercise during treatment of pediatric patients with
cancer. Pediatr Blood Cancer, 61(9), 1632-1637. doi: 10.1002/pbc.25071
Gritz, E. R., Carmack, C. L., de Moor, C., Coscarelli, A., Schacherer, C. W., Meyers, E. G., &
Abemayor, E. (1999). First year after head and neck cancer: quality of life. J Clin Oncol,
17(1), 352-360.
Hann, D., Winter, K., & Jacobsen, P. (1999). Measurement of depressive symptoms in cancer
patients: evaluation of the Center for Epidemiological Studies Depression Scale (CES-D).
J Psychosom Res, 46(5), 437-443.
Hefferon, K., Murphy, H., McLeod, J., Mutrie, N., & Campbell, A. (2013). Understanding
barriers to exercise implementation 5-year post-breast cancer diagnosis: a large-scale
qualitative study. Health Educ Res, 28(5), 843-856. doi: 10.1093/her/cyt083
Horn, T. S. (2011). Multiple pathways to knowledge generation: qualitative and quantitative
research approaches in sport and exercise psychology. Qualitative Research in Sport,
Exercise and Health, 3(3), 291-304.
International, Q. (2012). NVIVO (Version 10).
Jemal, A., Siegel, R., Ward, E., Hao, Y., Xu, J., & Thun, M. J. (2009). Cancer statistics, 2009.
CA Cancer J Clin, 59(4), 225-249. doi: 10.3322/caac.20006
49
Johnson, R. B., Onwuegbuzie, A. J., & Turner, L. A. (2007). Toward a Definition of Mixed
Methods Research. Journal of Mixed Methods Research, 1(2), 112-133. doi:
10.1177/1558689806298224
Jones, L. W., & Courneya, K. S. (2002). Exercise counseling and programming preferences of
cancer survivors. Cancer Pract, 10(4), 208-215.
Karvinen, K. H., Raedeke, T. D., Arastu, H., & Allison, R. R. (2011). Exercise programming and
counseling preferences of breast cancer survivors during or after radiation therapy. Oncol
Nurs Forum, 38(5), E326-334. doi: 10.1188/11.ONF.E326-E334
Kirkova, J., Davis, M. P., Walsh, D., Tiernan, E., O'Leary, N., LeGrand, S. B., . . . Russell, K. M.
(2006). Cancer symptom assessment instruments: a systematic review. J Clin Oncol,
24(9), 1459-1473. doi: 10.1200/JCO.2005.02.8332
List, M. A., D'Antonio, L. L., Cella, D. F., Siston, A., Mumby, P., Haraf, D., & Vokes, E.
(1996). The Performance Status Scale for Head and Neck Cancer Patients and the
Functional Assessment of Cancer Therapy-Head and Neck Scale. A study of utility and
validity. Cancer, 77(11), 2294-2301. doi: 10.1002/(SICI)10970142(19960601)77:11<2294::AID-CNCR17>3.0.CO;2-S
Loh, S. Y., Chew, S. L., & Lee, S. Y. (2011). Barriers to exercise: perspectives from multiethnic
cancer survivors in Malaysia. Asian Pac J Cancer Prev, 12(6), 1483-1488.
Lonbro, S. (2014). The effect of progressive resistance training on lean body mass in posttreatment cancer patients - a systematic review. Radiother Oncol, 110(1), 71-80. doi:
10.1016/j.radonc.2013.07.008
Lonbro, S., Dalgas, U., Primdahl, H., Johansen, J., Nielsen, J. L., Aagaard, P., . . . Overgaard, K.
(2013). Progressive resistance training rebuilds lean body mass in head and neck cancer
patients after radiotherapy--results from the randomized DAHANCA 25B trial. Radiother
Oncol, 108(2), 314-319. doi: 10.1016/j.radonc.2013.07.002
Lonbro, S., Petersen, G. B., Andersen, J. R., & Johansen, J. (2015). Prediction of critical weight
loss during radiation treatment in head and neck cancer patients is dependent on BMI.
Support Care Cancer. doi: 10.1007/s00520-015-2999-8
Mills, K. M., Stewart, A. L., Sepsis, P. G., & King, A. C. (1997). Consideration of older adults'
preferences for format of physical activity. Journal of Aging and Physical Activity, 5(1),
50-58.
Ottenbacher, A. J., Day, R. S., Taylor, W. C., Sharma, S. V., Sloane, R., Snyder, D. C., . . .
Demark-Wahnefried, W. (2011). Exercise among breast and prostate cancer survivors-what are their barriers? J Cancer Surviv, 5(4), 413-419. doi: 10.1007/s11764-011-0184-8
Piccirillo, C., Reichman. (2011). Cancers of the head and neck. . Cancer survival among adults:
US surveillance, epidemiology, and end results program, 1975-2008.
Rogers, Courneya, K. S., Robbins, K. T., Malone, J., Seiz, A., Koch, L., & Rao, K. (2008).
Physical activity correlates and barriers in head and neck cancer patients. Support Care
Cancer, 16(1), 19-27. doi: 10.1007/s00520-007-0293-0
Rogers, L. Q., Courneya, K. S., Robbins, K. T., Malone, J., Seiz, A., Koch, L., . . . Nagarkar, M.
(2006). Physical activity and quality of life in head and neck cancer survivors. Support
Care Cancer, 14(10), 1012-1019. doi: 10.1007/s00520-006-0044-7
Rogers, L. Q., Courneya, K. S., Shah, P., Dunnington, G., & Hopkins-Price, P. (2007). Exercise
stage of change, barriers, expectations, values and preferences among breast cancer
patients during treatment: a pilot study. Eur J Cancer Care (Engl), 16(1), 55-66. doi:
10.1111/j.1365-2354.2006.00705.x
50
Rogers, L. Q., Courneya, K. S., Verhulst, S., Markwell, S. J., & McAuley, E. (2008). Factors
associated with exercise counseling and program preferences among breast cancer
survivors. J Phys Act Health, 5(5), 688-705.
Rogers, L. Q., Malone, J., Rao, K., Courneya, K. S., Fogleman, A., Tippey, A., . . . Robbins, K.
T. (2009). Exercise preferences among patients with head and neck cancer: prevalence
and associations with quality of life, symptom severity, depression, and rural residence.
Head Neck, 31(8), 994-1005. doi: 10.1002/hed.21053
Rogers, L. Q., Markwell, S. J., Verhulst, S., McAuley, E., & Courneya, K. S. (2009). Rural
breast cancer survivors: exercise preferences and their determinants. Psychooncology,
18(4), 412-421. doi: 10.1002/pon.1497
Rogers, L. Q., Vicari, S., & Courneya, K. S. (2010). Lessons learned in the trenches: facilitating
exercise adherence among breast cancer survivors in a group setting. Cancer Nurs, 33(6),
E10-17. doi: 10.1097/NCC.0b013e3181db699d
Rogers, S. N., Miller, R. D., Ali, K., Minhas, A. B., Williams, H. F., & Lowe, D. (2006).
Patients' perceived health status following primary surgery for oral and oropharyngeal
cancer. Int J Oral Maxillofac Surg, 35(10), 913-919. doi: 10.1016/j.ijom.2006.07.017
Schmitz, K. H., Courneya, K. S., Matthews, C., Demark-Wahnefried, W., Galvao, D. A., Pinto,
B. M., . . . American College of Sports, M. (2010). American College of Sports Medicine
roundtable on exercise guidelines for cancer survivors. Med Sci Sports Exerc, 42(7),
1409-1426. doi: 10.1249/MSS.0b013e3181e0c112
Schmitz, K. H., Holtzman, J., Courneya, K. S., Masse, L. C., Duval, S., & Kane, R. (2005).
Controlled physical activity trials in cancer survivors: a systematic review and metaanalysis. Cancer Epidemiol Biomarkers Prev, 14(7), 1588-1595. doi: 10.1158/10559965.EPI-04-0703
Siegel, Miller, K. D., & Jemal, A. (2015). Cancer statistics, 2015. CA Cancer J Clin, 65(1), 5-29.
doi: 10.3322/caac.21254
Siegel, Naishadham, D., & Jemal, A. (2012). Cancer statistics, 2012. CA Cancer J Clin, 62(1),
10-29. doi: 10.3322/caac.20138
Speck, R. M., Courneya, K. S., Masse, L. C., Duval, S., & Schmitz, K. H. (2010). An update of
controlled physical activity trials in cancer survivors: a systematic review and metaanalysis. J Cancer Surviv, 4(2), 87-100. doi: 10.1007/s11764-009-0110-5
Spence, R. R., Heesch, K. C., & Brown, W. J. (2011). Colorectal cancer survivors' exercise
experiences and preferences: qualitative findings from an exercise rehabilitation
programme immediately after chemotherapy. Eur J Cancer Care (Engl), 20(2), 257-266.
doi: 10.1111/j.1365-2354.2010.01214.x
Stevinson, C., Capstick, V., Schepansky, A., Tonkin, K., Vallance, J. K., Ladha, A. B., . . .
Courneya, K. S. (2009). Physical activity preferences of ovarian cancer survivors.
Psychooncology, 18(4), 422-428. doi: 10.1002/pon.1396
Taylor, A. H. (2013). Routledge Handbook of Physical Activity and Mental Health. Mental
Health and Physical Activity, 6(2), 101-102. doi: 10.1016/j.mhpa.2013.06.003
Vallance, J. K., Courneya, K. S., Jones, L. W., & Reiman, T. (2006). Exercise preferences
among a population-based sample of non-Hodgkin's lymphoma survivors. Eur J Cancer
Care (Engl), 15(1), 34-43. doi: 10.1111/j.1365-2354.2005.00617.x
51
Appendices
Appendix A: Study Recruitment
Figure 2: Recruitment Diagram
Original Study Sample
Participants Contacted
• 60 hypo-pharyngeal,
nasopharyngeal and laryngopharyngeal cancer survivors
participated in the ENHANCE
exercise trial
• 47 contacted via email or follow
up appointment at TBCC
•13 deceased or email bounced
back
22 Questionnaire
Participants
•Mailed questionnaire or filled out
at in clinic at TBCC
18 Interview Participants
•17 questionnaire participants
•1 additional participant (did not
complete questionnaire)
52
Appendix B: Semi-Structured Interview Guide
1. Why did you decide to join the study?
a. What was your previous experience with exercise?
2. Could you tell me a little bit about your experience participating in the ENHANCE trial?
a. Probes
i. Could you elaborate on the benefits you experienced?
ii. Could you elaborate on the negative side effects you experienced?
iii. Please further describe your adherence throughout the intervention?
3. Can you tell me about your physical activity barriers?
a. Probes
i. Did these factors change from before the intervention to the end?
ii. Could you further describe their influence on your attendance?
iii. Could you elaborate on strategies you used to overcome these barriers?
iv. What did or could others do to facilitate overcoming these barriers?
4. Can you describe your preferences for engaging in physical activity?
a. Probes
i. What were your thoughts on the class size, composition and instructor?
ii. How did you find the variety of exercises and equipment?
iii. Did your enjoyment of the class format change throughout participation?
What factors did, and how?
iv. Are your preferences different now than what they were before you
started?
5. What changes would you make to ENHANCE if you could?
6. Do you have any additional comments?
53
Appendix C: Questionnaire
DEMOGRAPHICS
ONLY complete form if answers have changes since your last ENHANCE assessment.
Please answer in relation to your CURRENT status:
Please check only one option. If you do not wish to answer a question, please skip and go to the
next question. All information provided will be kept anonymous and confidential.
1. Marital status:
Married/ common law:

Divorced/ separated:

Widowed:

Single:

Other:

2. Education Level (please check highest level attained):
Some high school:

Completed high school:

Some university/ College:

Completed University/ College:

Some OR completed Grad school:

3. Annual Family Income:
<31,000:

31,000-60,499:

60,500-89,999:

90,000-150,000:

54

>150,000:
4. Employment Status:
Full-time:

Homemaker:

Retired:

Part-time:

Unemployed:

Disability/ sick leave: 
If Unemployed or on Disability / Sick leave, how many months have you been away from work?
______________
If returned to work please indicate when:
_______________
5. Gender
Male:

Female:

Trans*:

6. Age: ___________
7. Do you meet current physical activity guidelines (150 min moderate to vigorous physical
activity/week and 2 resistance training sessions/week)?
Yes

No

55
GODIN LEISURE TIME EXERCISE QUESITONNAIRE
We would like you to recall your average weekly exercise over the past month. How many
times per week on average did you do the following kinds of exercise over the past month?
When answering these questions please remember to:
Consider your average weekly exercise over the past month
Only count exercise sessions that lasted 15 minutes or longer in duration
Only count exercise that was done during free time (i.e. do not included occupation or
housework)
Note the main difference between the three categories is the intensity of the exercise
Write the average frequency on the first line and the average duration on the second line
STRENUOUS EXERCISE (Heart beats rapidly, sweating)
(e.g., running, jogging, hockey, soccer, squash, cross country skiing, judo, roller skating,
vigorous swimming, vigorous long distance bicycling, vigorous aerobic dance classes, heavy
weight training)
In an average week I was involved in strenuous exercise __________ times/week for an
average duration of __________ minutes/each session.
MODERATE EXERCISE (Not exhausting, light perspiration)
(e.g., fast walking, baseball, tennis, easy bicycling, volleyball, badminton, easy swimming,
alpine skiing, popular and folk dancing)
In an average week I was involved in moderate exercise __________ times/week for an
average duration of __________ minutes/each session.
MILD EXERCISE (Minimal effort, no perspiration)
(e.g., easy walking, yoga, archery, fishing, bowling, lawn bowling, shuffleboard, horseshoes,
golf, snowmobiling)
In an average week I was involved in mild exercise __________ times/week for an average
duration of __________ minutes/each session.
RESISTANCE TRAINING EXERCISE
(e.g. exercises with dumbbells, body weight, bands such as squats, bicep curls, etc.)
In an average week I perform resistance training activities__________ times/ week for
an average duration of _______ minutes/session.
FLEXIBILITY TRAINING EXERCISE
(e.g. yoga, stretching)
In an average week I perform flexibility training activities__________ times/ week for an
average duration of _______ minutes/session.
54
FUNCTIONAL ASSESSMENT OF CANCER THERAPY (FACT-AN-4)
Below is a list of statements that other people with your illness have said are important. Please
circle or mark one number per line to indicate your response as it applies to the past 7
days.
English (Universal)
Copyright 1987, 1997
PHYSICAL WELL-BEING
Not
at all
A
little
bit
Some Quite
-what a bit
Very
much
GP1
I have a lack of
energy
..............................................................................................
0
1
2
3
4
GP2
I have
nausea
..............................................................................................
0
1
2
3
4
GP3
Because of my physical condition, I have trouble meeting
the needs of my
family
..............................................................................................
0
1
2
3
4
GP4
I have
pain
..............................................................................................
0
1
2
3
4
GP5
I am bothered by side effects of
treatment
..............................................................................................
0
1
2
3
4
GP6
I feel
ill
..............................................................................................
0
1
2
3
4
GP7
I am forced to spend time in
bed
0
1
2
3
4
55
SOCIAL/FAMILY WELL-BEING
Not
at all
A
little
bit
Some Quite
-what a bit
Very
much
GS1
I feel close to my
friends
..............................................................................................
0
1
2
3
4
GS2
I get emotional support from my
family
..............................................................................................
0
1
2
3
4
GS3
I get support from my
friends
..............................................................................................
0
1
2
3
4
GS4
My family has accepted my
illness
..............................................................................................
0
1
2
3
4
GS5
I am satisfied with family communication about my
illness
..............................................................................................
0
1
2
3
4
I feel close to my partner (or the person who is my main
support)
..............................................................................................
0
1
2
3
4
0
1
2
3
4
GS6
Q1
Regardless of your current level of sexual activity, please
answer the following question. If you prefer not to answer
it, please mark this box
and go to the next section.
GS7
I am satisfied with my sex
life
..............................................................................................
56
Please circle or mark one number per line to indicate your response as it applies to
the past 7 days.
English (Universal)
Copyright 1987, 1997
EMOTIONAL WELL-BEING
Not
at all
A
little
bit
Some Quite Very
-what a bit much
GE1
I feel
sad
..............................................................................................
0
1
2
3
4
GE2
I am satisfied with how I am coping with my
illness
..............................................................................................
0
1
2
3
4
GE3
I am losing hope in the fight against my
illness
..............................................................................................
0
1
2
3
4
GE4
I feel
nervous
..............................................................................................
0
1
2
3
4
GE5
I worry about
dying
..............................................................................................
0
1
2
3
4
GE6
I worry that my condition will worsen
0
1
2
3
4
FUNCTIONAL WELL-BEING
Not
at
all
A
little
bit
Some Quite Very
-what a bit much
GF1
I am able to work (include work at
home)
..............................................................................................
0
1
2
3
4
GF2
My work (include work at home) is
fulfilling
..............................................................................................
0
1
2
3
4
57
GF3
I am able to enjoy
life
..............................................................................................
0
1
2
3
4
GF4
I have accepted my
illness
..............................................................................................
0
1
2
3
4
GF5
I am sleeping
well
..............................................................................................
0
1
2
3
4
GF6
I am enjoying the things I usually do for
fun
..............................................................................................
0
1
2
3
4
GF7
I am content with the current quality of my life
0
1
2
3
4
Please circle or mark one number per line to indicate your response as it applies to
the past 7 days.
English (Universal)
Copyright 1987, 1997
ADDITIONAL CONCERNS
Not
at all
A
little
bit
Some Quite Very
-what a bit much
HI7
I feel
fatigued
..............................................................................................
0
1
2
3
4
HI12
I feel weak all
over
..............................................................................................
0
1
2
3
4
An1
I feel listless (“washed
out”)
..............................................................................................
0
1
2
3
4
An2
I feel
tired
..............................................................................................
0
1
2
3
4
58
An3
I have trouble starting things because I am
tired
..............................................................................................
0
1
2
3
4
An4
I have trouble finishing things because I am
tired
..............................................................................................
0
1
2
3
4
An5
I have
energy
..............................................................................................
0
1
2
3
4
An6
I have trouble
walking
..............................................................................................
0
1
2
3
4
An7
I am able to do my usual
activities
..............................................................................................
0
1
2
3
4
An8
I need to sleep during the
day
..............................................................................................
0
1
2
3
4
An9
I feel lightheaded
(dizzy)
..............................................................................................
0
1
2
3
4
An10
I get
headaches
..............................................................................................
0
1
2
3
4
B1
I have been short of
breath
..............................................................................................
..............................................................................................
0
1
2
3
4
An11
I have pain in my
chest
..............................................................................................
0
1
2
3
4
An12
I am too tired to
eat
..............................................................................................
0
1
2
3
4
59
BL4
I am interested in
sex
..............................................................................................
0
1
2
3
4
An13
I am motivated to do my usual
activities
..............................................................................................
0
1
2
3
4
An14
I need help doing my usual
activities
..............................................................................................
0
1
2
3
4
An15
I am frustrated by being too tired to do the things I want to
do
0
1
2
3
4
0
1
2
3
4
An16
I have to limit my social activity because I am
tired
Below is a list of statements that other people with your illness have said are important.
Please circle or mark one number per line to indicate your response as it applies to
the past 7 days. (NCCN-FACT FHNSI-22)
English (Universal)
Copyright 2001
Not at
all
A
little
bit
Somewhat
Quite
a bit
Very
much
GP4
I have
pain
.........................................................................
0
1
2
3
4
C2
I am losing
weight
.........................................................................
0
1
2
3
4
HN3
I have trouble
breathing
.........................................................................
0
1
2
3
4
GP6
I feel
ill
.........................................................................
0
1
2
3
4
60
HN12
I have pain in my mouth, throat or
neck
.........................................................................
GP3
Because of my physical condition, I have
trouble meeting the needs of my
family
.........................................................................
0
1
2
3
4
0
1
2
3
4
HN7
I can swallow naturally and
easily
.........................................................................
0
1
2
3
4
HN1
I am able to eat the foods that I
like
.........................................................................
0
1
2
3
4
HN10
I am able to communicate with
others
.........................................................................
0
1
2
3
4
HN11
I can eat solid
foods
.........................................................................
0
1
2
3
4
GF5
I am sleeping
well
.........................................................................
0
1
2
3
4
GE6
I worry that my condition will get
worse
.........................................................................
0
1
2
3
4
GP1
I have a lack of
energy
.........................................................................
0
1
2
3
4
GP2
I have
nausea
.........................................................................
0
1
2
3
4
Hep
5
I have had a change in the way food
tastes
.........................................................................
0
1
2
3
4
61
N6
I have mouth
sores
.........................................................................
0
1
2
3
4
B5
I am bothered by hair
loss
.........................................................................
0
1
2
3
4
GP5
I am bothered by side effects of
treatment
.........................................................................
0
1
2
3
4
C6
I have a good
appetite
.........................................................................
0
1
2
3
4
GF1
I am able to work (include work at
home)
.........................................................................
0
1
2
3
4
GF3
I am able to enjoy
life
.........................................................................
0
1
2
3
4
GF7
I am content with the quality of my life right
now
.........................................................................
0
1
2
3
4
62
CES-D
INSTRUCTIONS: Please indicate how often you have felt this way DURING THE PAST WEEK. Circle the
number in the appropriate box below.
1
RARELY,
none of the time
(less than a day)
2
SOME,
or little of the time (one or
two days)
3
4
OCCASIONALLY,
or a moderate amount of time (three to four days)
MOST,
or all of the time
(five to seven days)
DURING THE PAST WEEK ........
1. I was bothered by things that don’t usually bother me.
1
2
3
4
2. I did not feel like eating; my appetite was poor.
1
2
3
4
3. I felt that I could not shake off the blues, even with
help from my family or friends.
1
2
3
4
4. I felt that I was just as good as other people
1
2
3
4
5. I had trouble keeping my mind on what I was doing.
1
2
3
4
6. I felt depressed.
1
2
3
4
7. I felt everything I did was an effort.
1
2
3
4
8. I felt hopeful about the future.
1
2
3
4
9. I thought my life had been a failure.
1
2
3
4
10. I felt fearful.
1
2
3
4
11. My sleep was restless.
1
2
3
4
12. I was happy.
1
2
3
4
13. I talked less than usual.
1
2
3
4
14. I felt lonely.
1
2
3
4
15. People were unfriendly.
1
2
3
4
16. I enjoyed life.
1
2
3
4
17. I had crying spells.
1
2
3
4
18. I felt sad.
1
2
3
4
19. I felt that people disliked me.
1
2
3
4
20. I could not get “going.”
1
2
3
4
63
Edmonton Symptom Assessment System (ESAS)
Name: _____________________________________________
Date: _____________________________________________
Please circle the number that best describes you:
No pain
0
1
2
3
4
5
6
7
8
9
10
Worst possible pain
Not tired
0
1
2
3
4
5
6
7
8
9
10
Worst possible tiredness
Not nauseated
0
1
2
3
4
5
6
7
8
9
10
Worst possible nausea
Not depressed
0
1
2
3
4
5
6
7
8
9
10
Worst possible depression
Not anxious
0
1
2
3
4
5
6
7
8
9
10
Worst possible anxiety
Not drowsy
0
1
2
3
4
5
6
7
8
9
10
Worst possible drowsiness
Best appetite
0
1
2
3
4
5
6
7
8
9
10
Worst possible appetite
Best feeling of
wellbeing
0
1
2
3
4
5
6
7
8
9
10
Worst possible feeling of
wellbeing
No shortness of
breath
0
1
2
3
4
5
6
7
8
9
10
Worst possible shortness of
breath
Other problem
0
1
2
3
4
5
6
7
8
9
10
64
Physical Activity Participation Barrier Questionnaire
(Modified from Rogers et al., 2007)
Please indicate the frequency at which each item influenced your participation in physical activity before
ENHANCE.
Never
Rarely
Sometimes
Somewhat
Very frequently
frequently
Dry mouth or throat
1
2
3
4
5
Lack of interest
1
2
3
4
5
Fatigue
1
2
3
4
5
Exercise not a priority
1
2
3
4
5
Lack of enjoyment
1
2
3
4
5
Exercise not in routine
1
2
3
4
5
Procrastination
1
2
3
4
5
Drainage in mouth or throat
1
2
3
4
5
Lack of self-discipline
1
2
3
4
5
Difficulty eating
1
2
3
4
5
Pain
1
2
3
4
5
Lack of equipment
1
2
3
4
5
Weather
1
2
3
4
5
Inconvenient exercise
1
2
3
4
5
Shortness of breath
1
2
3
4
5
Feel self-conscious about
1
2
3
4
5
1
2
3
4
5
schedule
appearance
Exercise is boring
65
Muscle weakness
1
2
3
4
5
Difficulty swallowing
1
2
3
4
5
Negative interactions with
1
2
3
4
5
Decreased food intake
1
2
3
4
5
Difficulty breathing
1
2
3
4
5
Lack of time
1
2
3
4
5
Don’t enjoy class format
1
2
3
4
5
Lack of facilities and/or space
1
2
3
4
5
Shoulder weakness and/or
1
2
3
4
5
Cough
1
2
3
4
5
Difficulty communicating
1
2
3
4
5
Don’t feel confident in
1
2
3
4
5
Lack of company
1
2
3
4
5
Lack of accessible/convenient
1
2
3
4
5
Cost
1
2
3
4
5
Family responsibilities
1
2
3
4
5
Fear of making condition
1
2
3
4
5
1
2
3
4
5
staff/instructors
pain
exercise abilities
facilities or space
worse
Lack of knowledgeable
exercise staff
66
Fear of injury
1
2
3
4
5
Lack of accessible
1
2
3
4
5
Lack of skills
1
2
3
4
5
Nausea
1
2
3
4
5
knowledgeable exercise staff
67
Physical Activity Programming Preferences
Modified from Rogers et al., 2009
Please mark the box located to the right of your preferred choice before participating in ENHANCE. You
can check all that apply.
Program
Preference
element
If you were engaging in regular physical activity…
Location
Where would you most like to exercise on a regular basis?
Outdoors
Home
Work
Health club, YMCA, YWCA, or
community center
Cancer center
Other
No preference
Company
With whom would you most like to exercise?
Alone
Family member
Coworker or friend
Fellow cancer survivors
No preference
Supervision
How would you prefer to perform exercise?
Supervised
Unsupervised
No preference
Structure
What would you prefer the structure of your exercise program to be?
Flexible
Scheduled
No preference
Time of day
When would you most like to exercise?
Morning
68
Afternoon
Evening
No preference
Intensity
What intensity would you prefer for exercise?
Low
Moderate
High
No preference
Variability
Would you like to perform exercise activities that are:
Same each time
Different each time
No preference
Instructor
What instructor characteristics do you prefer?
characteristics
Minimal involvement, primarily there
to time and for the occasional
adjustment, primarily an independent
workout
Intermediate level of involvement,
generally lets me go at my own pace,
but occasionally pushes me
Very hands on, pushes me to my
limits, lots of attention
Instructor
What qualifications would you prefer your instructor to have?
qualifications
Kinesiology degree
Certified personal trainer
Certified exercise physiologist
Previous experience instructing
cancer survivors
Previous experience instructing
clinical non cancer populations
Previous experience instructing
healthy populations
No preference
69
Program type‡
What type of program would you prefer?
General exercise (stamina/muscle
strength)
Physical therapy for specific needs
Physical therapy and general
exercise
No preference
What is your preferred type of physical activity to perform in the summer?
____________________________________________________________________________________
____________________________________________________________________________________
What is your preferred type of physical activity to perform in the winter?
____________________________________________________________________________________
____________________________________________________________________________________
70
Physical Activity Participation Barrier Questionnaire
(Modified from Rogers et al., 2007)
Please indicate the frequency at which each item influenced your participation in physical activity after participating
in the ENHANCE intervention.
Never
Rarely
Sometimes
Somewhat
Very frequently
frequently
Dry mouth or throat
1
2
3
4
5
Lack of interest
1
2
3
4
5
Fatigue
1
2
3
4
5
Exercise not a priority
1
2
3
4
5
Lack of enjoyment
1
2
3
4
5
Exercise not in routine
1
2
3
4
5
Procrastination
1
2
3
4
5
Drainage in mouth or throat
1
2
3
4
5
Lack of self-discipline
1
2
3
4
5
Difficulty eating
1
2
3
4
5
Pain
1
2
3
4
5
Lack of equipment
1
2
3
4
5
Weather
1
2
3
4
5
Inconvenient exercise
1
2
3
4
5
Shortness of breath
1
2
3
4
5
Feel self-conscious about
1
2
3
4
5
1
2
3
4
5
schedule
appearance
Exercise is boring
71
Muscle weakness
1
2
3
4
5
Difficulty swallowing
1
2
3
4
5
Negative interactions with
1
2
3
4
5
Decreased food intake
1
2
3
4
5
Difficulty breathing
1
2
3
4
5
Lack of time
1
2
3
4
5
Don’t enjoy class format
1
2
3
4
5
Lack of facilities and/or space
1
2
3
4
5
Shoulder weakness and/or
1
2
3
4
5
Cough
1
2
3
4
5
Difficulty communicating
1
2
3
4
5
Don’t feel confident in
1
2
3
4
5
Lack of company
1
2
3
4
5
Lack of accessible/convenient
1
2
3
4
5
Cost
1
2
3
4
5
Family responsibilities
1
2
3
4
5
Fear of making condition
1
2
3
4
5
1
2
3
4
5
staff/instructors
pain
exercise abilities
facilities or space
worse
Lack of knowledgeable
exercise staff
72
Fear of injury
1
2
3
4
5
Lack of accessible
1
2
3
4
5
Lack of skills
1
2
3
4
5
Nausea
1
2
3
4
5
knowledgeable exercise staff
73
Physical Activity Programming Preferences
Modified from Rogers et al., 2009
Please mark the box located to the right of your preferred physical activity choice after ENHANCE
participation. You can check all that apply.
Program
Preference
element
If you were engaging in regular physical activity…
Location
Where would you most like to exercise on a regular basis?
Outdoors
Home
Work
Health club, YMCA, YWCA, or
community center
Cancer center
Other
No preference
Company
With whom would you most like to exercise?
Alone
Family member
Coworker or friend
Fellow cancer survivors
No preference
Supervision
How would you prefer to perform exercise?
Supervised
Unsupervised
No preference
Structure
What would you prefer the structure of your exercise program to be?
Flexible
Scheduled
No preference
Time of day
When would you most like to exercise?
Morning
74
Afternoon
Evening
No preference
Intensity
What intensity would you prefer for exercise?
Low
Moderate
High
No preference
Variability
Would you like to perform exercise activities that are:
Same each time
Different each time
No preference
Instructor
What instructor characteristics do you prefer?
characteristics
Minimal involvement, primarily there
to time and for the occasional
adjustment, primarily an independent
workout
Intermediate level of involvement,
generally lets me go at my own pace,
but occasionally pushes me
Very hands on, pushes me to my
limits, lots of attention
Instructor
What qualifications would you prefer your instructor to have?
qualifications
Kinesiology degree
Certified personal trainer
Certified exercise physiologist
Previous experience instructing
cancer survivors
Previous experience instructing
clinical non cancer populations
Previous experience instructing
healthy populations
No preference
75
Program type‡
What type of program would you prefer?
General exercise (stamina/muscle
strength)
Physical therapy for specific needs
Physical therapy and general
exercise
No preference
What is your preferred type of physical activity to perform in the summer?
____________________________________________________________________________________
____________________________________________________________________________________
What is your preferred type of physical activity to perform in the winter?
____________________________________________________________________________________
____________________________________________________________________________________
76
Appendix D: Correlation Tables
Table 4. Demographic and medical correlates of total number of exercise barriers
experienced before participation in the ENHANCE trial.
Correlates
Correlation (r)
Months from Diagnosis
Age
Meeting PA Guidelines
GLTEQ Guidelines
GLTEQ Strenuous
GLTEQ Total
GLTEQ RET
ESAS Total
CESD Total
Quality of Life (FACT-G)
Anemia (FACT-An)
-.191
-.202
-.228
-.455
-.365
-.409
.250
.491
.508
-.254
.608
Significance (a)
.394
.392
.307
.034*
.095
.059
.913
.020*
.016*
.253
.003*
Table 5. Demographic and medical correlates of total number of exercise barriers
experienced after participation in the ENHANCE trial.
Correlates
Correlation (r)
Significance (a)
Months from Diagnosis
Age
Meeting PA Guidelines
GLTEQ Guidelines
.212
-.630
-.135
-.234
.357
.004*
.560
.308
GLTEQ Strenuous
GLTEQ Total
-.144
-.305
.532
.179
GLTEQ RET
ESAS Total
CESD Total
-.494
.227
.249
.023 *
.322
.276
Quality of Life (FACT-G)
-.434
.049*
77
Appendix E: Theme Charts
3
78
79