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The association between high risk behavior and health locus of control in head and neck cancer surviors

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The association between high risk behavior and health locus of control in head and neck cancer surviors
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Shih, Shih-Ming
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Continued substance use is regarded as an important risk factor for cancer survivor, but how it associates with quality of life or other psychological factors is not clear. The main purpose of this study is to investigate the relationships between continued alcohol/tobacco use, internal health locus of control (I-HLOC) and quality of life (QoL). Forty-six head-and-neck cancer survivors were recruited in this study. Point-biserial correlation coefficient analysis and Pearson's correlation coefficient were utilized to examine the relationships. The results indicated that continued use of tobacco was negatively associated with QoL but positively with I-HLO, while continued use of alcohol was positively associated with physical well-being. The results suggest that continued use of alcohol and tobacco should be regarded as separate risk behaviors, and the relationship between HLOC and risk behaviors might be more complicated.
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Includes bibliographical references.
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by Shih-Ming Shih.

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Full Text
THE ASSOCIATION BETWEEN HIGH RISK BEHAVIOR AND
HEALTH LOCUS OF CONTROL IN HEAD AND NECK CANCER SURVIORS
by
Shih-Ming Shih
B.A., National Taiwan University, 1994
M.A., National Dong Hwa University, 1999
A thesis submitted to the
University of Colorado Denver
in partial fulfillment
of the requirements for the degree of
Master of Arts
Clinical Psychology
2012


This thesis for the Master of Arts
degree by
Shih-Ming Shih
has been approved by
Kristin Kilboum
Evelinn Borrayo
Jim Grigsby


Shih, Shih-Ming (Master of Arts, Clinical Psychology)
The Association between High Risk Behavior and
Health Locus of Control in Head and Neck Cancer Survivors
Thesis directed by Assistant Professor Kristin Kilbourn
ABSTRACT
Continued substance use is regarded as an important risk factor for cancer survivor,
but how it associates with quality of life or other psychological factors is not clear.
The main purpose of this study is to investigate the relationships between continued
alcohol/tobacco use, internal health locus of control (I-HLOC) and quality of life
(QoL). Forty-six head-and-neck cancer survivors were recruited in this study.
Point-biserial correlation coefficient analysis and Pearsons correlation coefficient
were utilized to examine the relationships. The results indicated that continued use
of tobacco was negatively associated with QoL but positively with I-HLO, while
continued use of alcohol was positively associated with physical well-being. The
results suggest that continued use of alcohol and tobacco should be regarded as
separate risk behaviors, and the relationship between HLOC and risk behaviors might
be more complicated.
This abstract accurately represents the content of the candidates thesis. I recommend
its publication.
Approved: Kristin Kilbourn


ACKNOWLEDGMENT
My thanks to my advisor, Kristin Kilboum, for her contribution and support to my
research. I also wish to thank Evelinn Borrayo and Jim Grigsby for their valuable
participation and insights.


TABLE OF CONTENTS
Tables.............................................................vii
CHAPTER
1 INTRODUCTION.................................................... 1
From a Cancer Patient to a Survivor....................... 2
Cancer Survivors Research: What are the Understudied Areas in 3
HNCS................................................
2 REVIEW OF THE LITERATURE........................................ 6
Health Risk Behaviors in Head and Neck Cancer............. 6
Alcohol and Tobacco Use in Head and Neck Cancer........ 6
Alcohol and Tobacco Use as a Coping Mechanism.......... 9
Quality of Life, Psychological Distress and Treatment-Related
Side Effects............................................... 11
Factors Affecting Quality of Life in HNC Survivors..... 11
Psychological Distress in HNC Survivors................. 12
Treatment Side-Effects in HNC Survivors................. 16
Health Locus of Control in Cancer Patients................. 20
Health Locus of Control: Definition and Concept Development 20
Health Locus of Control and Health/Risk Behaviors....... 21
Health Locus of Control and Physical and Emotional Distress.. 24
Summary.................................................... 27
3 METHOD......................................................... 29
Participants and Procedure................................. 29
Domains Included in the Survey Instrument.................. 30
Demographics............................................ 30
v


High Risk Health Behaviors (Continued Alcohol and Tobacco
Use)................................................ 30
Quality of Life (Emotional and Physical Well-Being). 30
Health Locus of Control....................... 31
Purposes and Hypotheses.......................... 31
Data Analyses.......................................... 33
4. RESULTS................................................... 34
5. DISCUS SION AND CONCLUSIONS............................... 41
APPENDIX 47
A. QLESiiOWAIRS....................................... 47
REFERENCES..................................................... 57
vi


LIST OF TABLES
Table
1 Demographic Data............................................. 34
2 Demographic and Medical Variables vs Continued Use/not Use 36
Alcohol/Tobacco..............................................
3 Demographic and Medical Variables vs Continued Use/ Not Use 38
Alcohol/Tobacco..............................................
4 Correlation: Quality of Life vs Use/ Not Use Alcohol/Tobacco. 39
5 Internal-HLOC vs Quality of Life............................. 39
6 Internal-HLOC vs Use/Not Use Alcohol/Tobacco................. 40
vii


CHAPTER 1
INTRODUCTION
In 2004, there were an estimated 10.7 million cancer survivors which represent
3.5% of the United States population (Travis & Yahalom, 2008). With the increasing
survival rate as well as the number of survivors living with cancers, cancer is now
viewed as a chronic illness, which is prolonged and might not be cured completely
(Aziz, 2007). The quality of cancer survivorship care and the transition from a cancer
patient to survivor have acquired more attention in the past few years (Holland &
Reznik, 2005, Stanton et al., 2005). There have been a number of national reports
such as Childhood Cancer Survivorship: Improving Care and Quality of Life and
From Cancer patients to Cancer Survivor: Lost in Transition (the Institute of
Medicine, 2003, 2005), A National Action Plan for Cancer Survivorship to Advance
Public Health Strategies (Centers for Disease Control and Prevention, 2004),
emphasizing the needs of cancer survivors.
Rowland et al. (2006) stated that cancer survivorship should be regarded as a
distinct phase of cancer care and we should act to deliver an appropriate survivorship
care given that the difficulties they face are very different from cancer patients in
treatment (Rowland, Hewitt, & Ganz, 2006). There is a strong need for collaboration
among researchers, clinicians, survivors and their loved ones to eliminate undue
1


suffering and promoting optimal health-related quality of life (QoL) for all cancer
survivors (Rowland & Stefanek, 2008).
From a Cancer Patient to a Survivor
The feelings of a cancer patient are complex, following the completion of
treatment. A survivor is relieved to finish treatments but at the same time, is worried
about the unknown challenges in the future. During cancer treatment, the goal for the
oncology patients is to get through the treatment(s) while minimizing life disruption.
The emotions that are often associated with a diagnosis of cancer may be repressed
until cancer treatment is complete. (M. E. Hewitt, Bamundo, Day, & Harvey, 2007).
As a result, cancer survivors often experience a range of emotions following
completion of primary cancer treatment and as they transition into the early stages of
cancer survivorship.
Stanton (2005) pointed out four myths of treatment completion, including I
should be celebrating, I should feel well, I should be the pre-cancer me, and I
should not need support (Stanton, et al., 2005). Cancer survivors often experience a
sense of uncertainty and general anxiety following the completion of treatment.
Survivors begins to realize that the pre-cancer me no longer exists and a new
identification of self may begin to emerge. In addition, family members and friends
may discontinue active support because they feel that the survivor is now fine. These
2


are just a few of the challenges at the beginning of the re-entry period in cancer
survivorship.
Cancer survivors transitional experiences have been described in a number of
qualitative studies. One study interviewed 55 older adults (65 to 81 years old) who
finished chemotherapy and radiation in the first and third months of treatment
(Towsley, Beck, & Watkins, 2007). It was found that learning to live with it
(cancer) was the core theme at the beginning of their transition to survivorship. The
process was dynamic and affected by survivors previous life experiences, attitudes,
positive and negative intervening factors such as social support system and physical
factors, and their coping strategies. They hypothesized that once survivors achieve a
new balance in their lives, they may gain a new perspective of what is important to
them. This process is complex and in constant flux. Research with breast cancer
survivors transitioning into the stage of early survivorship indicated that although
positive life changes are part of their experience, emotional distress, fear of
recurrence, and difficulty returning to a normal life are salient issues that survivors
strive to overcome (Allen, Savadatti, & Levy, 2009).
Cancer Survivors Research: What are the
Understudied Areas in HNCS
Rowland has stated that in the new millennium, the realm of survivorship
research should encompass the entire cancer control continuum which includes
3


prevention (promoting health behaviors, physical activity), detection (screening for
second cancer, adherence to follow-up care) and treatment management of side/late
effects (pain, cognitive function) (Rowland, 2007). Aziz (2007) pointed out that the
trend of survivorship research is moving from a descriptive nature (hypothesis
generating) toward analytic study designs (hypothesis testing), clinical trails and
intervention research. The new, evolving paradigm of cancer survivorship research
will include studying adverse sequelae of treatments, understanding the impact of
comorbidities, developing and testing health promotion and lifestyle interventions,
developing care guidelines for survivors and exploring the impact of cancer on the
family (Aziz, 2007).
One important understudied area is elder cancer survivors. Of the current 10
million cancer survivors, 60% are older than 65 years old, and more than 16% of U.S.
adults aged 65 years are cancer survivors (M. Hewitt, Rowland, & Yancik, 2003).
Nevertheless, few post-treatment clinical trails or epidemiologic studies have
investigated the psychological and physical issues of older cancer survivors. Factors
contributing to the burden of cancer in older populations include comorbid health
conditions, cognitive decline, perceived vulnerability of the elderly and
polypharmacy use (Bellizzi, Mustian, Palesh, & Diefenbach, 2008). In addition, side
effects resulting from cancer treatments are exacerbated by coexisting comorbid
health conditions. Directions for future research in aged cancer population include
4


recruiting more older patents into clinical trails, characterizing the mental, social, and
physical health burden of older cancer survivors with different cancers, identifying
moderators/mediators of high health risks, measuring pre- and post-treatment function,
disentangling cancer-related effects versus age related effects and examining health
outcomes (Bellizzi et al., 2008; Avis & Deimling, 2008).
Other areas where our knowledge of cancer survivorship is lacking is our
understanding of the unique needs of ethnically and culturally diverse populations
(subgroups such as low-income, or under-represented cancer site). There is a need to
examine some of the social-cultural and behavioral factors that may impact
adjustment to the early stages of cancer survivorship. Additionally, the impact of
cancer on families and caregivers, the economic burden of a cancer diagnosis, and the
challenges of returning to work after cancer treatment are important areas for future
research (Aziz, 2007; Rowland, 2007).
5


CHAPTER 2
REVIEW OF THE LITERATURE
Health Risk Behaviors in Head and Neck Cancer
Alcohol and Tobacco Use in Head and Neck Cancer
Alcohol and tobacco use are significant risk factors for head and neck cancer
(HNC). A large-scale international study analyzed individual-level pooled data from
17 European and American case-control studies (11,221 cases and 16,168 controls).
The results indicated that the population attributable risks for tobacco or alcohol was
72% for HNC, of which 4% was due to alcohol alone, 33% for tobacco alone, and
35% for tobacco and alcohol combined (Hashibe, et al., 2009). Higher risks were
revealed for pharyngeal cancer (89%) and laryngeal cancer (72%). Men are at higher
risk than women (74% versus 57%) and the elderly are at increased risk than younger
people (73% for cases >60 years versus 33% for cases <45 years).
Approximately, 30,100 new cases of HNC are diagnosed as oral and
pharyngeal cancers, accounting for 3% of all cancers in the United States, with 7,800
dying from the disease each year. Most of these cancers are diagnosed as late-stage.
(Silverman Jr, 2001). Despite advances in surgery and radiation, the five-year survival
rate remains at about 50% (58% for whites and 34% for African-Americans). Only
6


risks for nasopharynx, oropharynx and hypopharynx cancer showed significant
improvement in five-year survival rates (Carvalho, Nishimoto, Califano, & Kowalski,
2005).
It is estimated that 75% of HNC are associated with the use of tobacco product,
excessive alcohol consumption, and in many cases, the combination of the two
(Mashberg, Boffetta, Winkelman, & Garfinkel, 1993). The risk of head and neck
squamous cell carcinomas (HNSCC), the majority of HNC, is 10-fold for cigarette
smokers as compared to life time non-smokers. About 89-90% of HNSCC is
attributed to tobacco use and alcohol abuse (Sturgis & Cinciripini, 2007).
Strong trends in risks related to alcohol consumption were observed for cancers
of the oral cavity and pharynx, oesophagus and larynx (Bagnardi, Blangiardo, La
Vecchia, & Corrao, 2001). Tobacco smoking was more strongly correlated with
soft-palate lesions than with lesions in more anterior sites. Patients with cancer of the
floor of the mouth and oral tongue had higher odds for alcohol drinking (Boffetta,
Mashberg, Winkelmann, & Garfinkel, 1992). In a meta-analysis examining the effect
of alcohol drinking on the risk of developing cancer, Bagnardi et al. (2001) found that
in the non-smoker population, the odds are three-fold higher in drinkers than
non-drinkers.
Continued use of alcohol and tobacco are common in HNC survivors. Leon, et
al (2002) reported that 13% of patients continued smoking and 21% continued
7


drinking alcohol after treatment (X. Leon, et al. 2002). Miller et al. (2006) indicated
that about 34-57% of patients continue to consume alcohol after diagnosis of upper
aerodigestive tract cancer. However, the reported number may underestimate the real
percentage since most data are based solely on self-report. A study, combining
objective measurements (serum cotinine and end-expired carbon monoxide) and
interview data, revealed that up to 50% of self-reported non-smokers were actively
smoking (Hald, Overgaard, & Grau, 2003).
Persistent use of alcohol and tobacco increases the likelihood of developing a
second metachronous neoplasm. A study examined 514 HNSCC and found that the
odds ratio of a second neoplasm was 2.9 for patients who continued to smoke and 5.2
for patients who continued to use alcohol (X. Leon, et al., 2009). Based on the
attributable risk estimation, the authors concluded that persistent alcohol and tobacco
consumption could be responsible for one third of second neoplasms in HNSCC
patients. Similar research evaluated the joint effects of continuous tobacco smoking
and alcohol consumption on the risk of a second primary cancer in 1181 patients with
early stage HNSCC (Do, Johnson, Doherty, Lee, & Xi, 2003). The result indicated the
development of a second primary tumor is associated with continued smoking and
alcohol consumption, older age, stage II diagnosis and index diagnosis of pharyngeal
cancer.
8


Alcohol and Tobacco Use as a Coping Mechanism
Among patients with various cancers, specific types of coping behaviors are
associated with distress, health-related quality of life (HRQOL), and survival (Faller
& Bulzebruck, 2002; Hagedoom, Sanderman, Bolks, Tuinstra, & Coyne, 2008;
Pieterse, et al., 2007). Sherman et al. (2000) examined coping patterns among HNC
patients at the following four phases of illness: 1) pretreatment, 2) during treatment, 3)
less than six months after treatment and 4) more than six months after treatment
(Sherman, Simonton, Adams, Vural, & Hanna, 2000). The results indicated that
patients in different phases of treatment used distinct coping strategies. For example,
patients who were receiving treatment or were within six months of completing
treatment had higher levels of illness-related distress. They tended to use more
emotion-focused coping strategies such as denial, behavioral disengagement,
suppression of competing activities and emotional ventilation. Patients who were
more than six months post-treatment continued to experience distress but tended to
use different coping strategies such as religion, acceptance and active coping.
Continued use of alcohol and tobacco may serve as one of the dominant coping
responses for HNCS who are experiencing high levels of distress and do not have a
large repertoire of adaptive coping responses. Nevertheless, research in this area has
not yet determined a conclusive connection between distress and increased or
9


continued alcohol and tobacco use in HNCS. Humphris et al. (2004) tested the
relationship between psychological distress and continuing versus refraining from
smoking. The results revealed that 15 months after initial cancer treatment, 27% (20
out of 73) of the patients with oral or oropharyngeal cancer continued to smoke, 51%
abstained, and 10% returned to smoking (Humphris & Rogers, 2004). Consistent
smokers had higher distress levels than abstainers. The level of cigarette consumption
at baseline was a significant predictor of psychological distress at 15 months in those
who continued to smoke. Aarstad et al. (2007) also found that patients with HNSCC
reported after one year of treatment that they utilized drinking as a coping mechanism,
the degree of smoking and alcohol consumption increased while general quality of
life (QoL) decreased (Aarstad, Aarstad, & Olofsson, 2007).
In contrast, other research has reported a positive association between
continued alcohol use and health outcome. Vartanian (2006) found that continued
alcohol consumption was positively associated with less work-related disabilities in
301 patients who had squamous cell carcinoma of the upper aerodignestive tract and
were disease free for at least 2 years (Vartanian, Carvalho, Toyota, Kowalski, &
Kowalski, 2006). In addition, Allison (2002) found that in 191 HNCS, 80% of whom
had finished treatment, alcohol consumption was associated with better functional
and physical scores and lower levels of symptoms such as fatigue and pain as
compared to the patients who reported they had not drink alcohol during the last
10


month (Allison, 2002). Although positive associations between alcohol consumption
and physical function cannot confirm a causal relationship, the author raises the
question of whether moderate alcohol drinking is promoting recovery or resulting
from it.
Overall, alcohol and tobacco use are regarded as significant risk factors in the
development of HNC. Despite the known risks, a high proportion of HNC survivors
persistently use alcohol and tobacco after cancer treatments. Although continued use
of alcohol and tobacco increase the likelihood of developing second cancers, these
behaviors may represent important coping mechanisms for those dealing with
post-treatment distress. One of the factors that is lacking in much of the research
assessing alcohol use is the distinction between problematic alcohol consumption
versus moderate alcohol consumption.
Quality of Life, Psychological Distress and
Treatment-Related Side Effects.
Factors Affecting Quality of Life in HNC Survivors
In the last decade, quality of life (QoL) has become an important outcome
measure for cancer survivors since it measures physical, social and emotional factors
that may be impacted by cancer treatment. Rogers et al. (2007) reviewed 165 QoL
studies in HNC published between 2000 to 2005 and indicated that the dramatic
11


increase in the number of HRQOL research reflects the importance of the patients
perspective as an outcome parameter (Rogers, Ahad, & Murphy, 2007). The studies
were analyzed and categorized into five themes: predictors of HRQOL (59 studies),
functional outcome (50), questionnaire development/validation (11), randomized
controlled (11), and review/editorial (11). The study illustrated an overall picture of
QoL research within the realm of HNC. Understudied areas included lack of
information regarding: direct comparisons of HRQOL with various treatment
modalities; toxicity complications, patients perception of treatment burden; and the
outcome of salvage treatment. It is clear that intervention studies and randomized
trails assessing HRQOL as a primary outcome are in their infancy. It is also notable
that among 165 studies, only two examined the association between continued
substance use (alcohol and tobacco) and HRQOL.
Psychological Distress in HNC Survivors
Depression is present in HNC patients throughout the course of the cancer
trajectory. Compared to other cancer sites, HNC patients have one of the highest
levels of depression (Zabora et al., 2001). Estimates of depression rates in HNCS vary
according to where the patient is in the course of their treatment and the criterion used
to define depression. Research has shown depression rates as high as 40% at the
time of diagnosis, up to 52% during treatment, and as high as 45% six month
12


post-treatment. The levels of depression tended to decrease over time although it
has been shown that as many as 27% of HNCS may experience depression
(Haisfield-Wolfe, McGuire, Soeken, Geiger-Brown, & De Forge, 2009; Katz, Kopek,
Waldron, Devins, & Tomlinson, 2004; Kugaya, et al., 2000). In a three-year
longitudinal study, 197 HNCS were followed up before treatment to three years after
treatments (de Leeuw, et al., 2001). Depressive symptoms decreased gradually from
pretreatment (28%) to 6 months (24%) and to 3 years (20%) after treatment,
indicating that emotional functioning gradually improved with time although a
substantial number of survivors continued to experience distress many years after
their initial cancer diagnosis.
There are a number of individual characteristics that are positively correlated
with depression such as younger age, being unmarried, living alone, less social
support, lower education level, higher cancer stage, unemployment, more financial
stressors, and the number of reported treatment side-effects (Pandey, Devi, Ramdas,
Krishnan, & Kumar, 2009).
It has been hypothesized that depression in HNCS may be under-diagnosed and
confounded with treatment-related symptoms such as decreased appetite, problems
with sleep, high levels of pain and fatigue, cognitive impairments, and weight loss.
Additionally, nicotine withdrawal and alcohol-related mood disorders may contribute
to increased distress (Duffy, et al., 2007; Lydiatt, Moran, & Burke, 2009). Depression
13


was also found to be associated with anxiety in HNC patient (Pandey, et al., 2007).
Pre-treatment depressive symptoms were found to be the best predictor of
post-treatment depression (Kamell, Funk, Christensen, Rosenthal, & Magnuson,
2006). It has been suggested that pre-treatment screening for distress in HNC patients
may be useful for determining which patients have the greatest need for psychosocial
intervention. Early detection of high risk depression can facilitate appropriate
monitoring and timely intervention in cancer survivorship care.
Psychological problems of HNC patients are frequently comorbided with
alcohol and tobacco use, which may lead to poor treatment compliance and
complicate post-treatment rehabilitation. Duffy et al. (2007) surveyed 973 HNC
patients and reported that 46% of them were screened positive for depressive
symptoms, 30% smoking, and 16% problem drinking. Smoking and alcohol
consumption were positively associated with depressive symptoms. Other studies
found that depressive symptoms and smoking had a strong negative association with
QoL scales, especially in predicting physical status and social well-being (Duffy, et
al., 2007; Duffy, et al., 2002). One study reported that 64 % of pre-surgical HNC
patients (n=24) met the criteria of alcohol abuse and 62% alcohol dependence during
their life time. Additionally, 26.1% of the same population met criteria for major
depressive disorder (McCaffrey, et al., 2007). Fear of recurrence was commonly
reported by HNC survivors and found to be closely related to their psychological
14


distress (Humphris et al., 2003; Hodges, & Humphris, 2009). It is estimated that
one-third of cancer patients reported that they worry very much about recurrence
(Gotay & Pagano, 2007). A recent study of 278 HNC patients with oral and
oropharyngeal squamous cell carcinoma found that 18% of HNCS developed
recurrent diseases within 2 years. Among 51 patients with recurrence, 39% were
aware of the conditions and 59% were in stage 3 or 4 (Kissun, et al., 2006). Patients
who believed in a greater likelihood of recurrence tended to be more vigilant of
physical symptoms and were more likely to engage in self-blame behaviors (Scharloo,
et al., 2005). They also developed stronger emotional responses to the illness and
reported lower QoL scores.
Compared to other types of cancers, HNC patients often experience
psychological issues that do not fit diagnostic criteria but lead to high levels of
distress (Haman, 2008). These issues include neurocognitive dysfunction due to
cancer treatments, disfigurement and other body image issues, physical dysfunction
(such as impairment in voices or swallowing), high levels of pain, and sexual
disfunction. For instance, a study of 66 HNC patients who recently had surgery
reported that the severity of disfigurement was associated with poor self-image,
relationship problems, sexual problems and increased social isolation (Gamba, et al.,
1992).
Overall, high levels of depressive symptoms, low performance status and
15


combined chemotherapy and radiation treatments are significant predictors of low
QoL and poor functioning after treatment (de Graeff, et al., 2000). The result of a
large 10-year study of HNC patient indicated that after treatment, patients with low
QoL at 1 year had significantly increased odds of death (Mehanna & Morton, 2006).
The psychosocial factors that were found to be associated with negative prognosis in
long-term survival included low physical self-efficacy, less emotional expression,
poor cognitive function, being single and alcoholism (Mehanna, De Boer, & Morton,
2008). Despite these findings, the association between psychosocial factors, QoL and
survival is inconsistent and deserves further investigation.
The high rates of distress observed in HNC survivors suggests the need for
aggressive psychosocial screening and subsequent treatment of depression and
anxiety (Duffy, et al., 2007). It is hypothesized that psychosocial interventions that
decreasing depression, promote smoking cessation, and discourage problematic
drinking behavior will lead to improvements in overall QoL (Duffy, et al., 2006). In
addition, restructuring distorted illness perceptions (such as fear of recurrence or
emotional reaction to the illness) may lead to better psychosocial adjustment during
and after treatment (Scharloo, et al., 2005).
Treatment Side-Effects in HNC Survivors
The increasing number of cancer survivors has led to greater focus on the
16


short-term and long-term sequelae of cancer treatments on all organ systems (Miller
& Triano, 2008). Late or long-term side-effects have become an important index of
QoL in cancer survivors. Tumor localization and disease stage determine the
treatment approach, which in turn contributes to different side effects and
significantly impacts physical, social, and cognitive functioning as well as global
QoL (Alicikus, et al., 2009). When tumors are localized, many patients can be cured
by radiotherapy alone and thereby maintain full organ function (Zackrisson, Mercke,
Strander, Wennerberg, & Cavallin-Stahl, 2003). Radiation exposure can affect large
vessels, such as the internal carotid artery and can induce osteonecrosis of the jaw.
Other radiation-related side-effects include pain, changes in mucous production,
xerostormia, and dysphagia (Murphy & Gilbert, 2009). Langendijk, et al. (2008)
found that compared to xerostomia, swallowing problem result in a greater impact on
HRQOL, particularly during the first 18 months after the completion of radiotherapy.
Chemotherapeutic agents and radiotherapy can also impact the ability to swallow
which can lead to increased pain and malnutrition. Other chemotherapy side-effects
include nausea, vomiting, nutropenia, general weakness and fatigue (Manikantan, et
al., 2009).
Surgery can also lead to a number of long-term problems. Spinal accessory
nerve can be compromised during neck dissection for head and neck carcinoma and
for locally advanced larynx and oral cavity cancers, speech is directly affected
17


postoperatively (Bjordal, et al., 2001). In addition, insufficient reconstruction after
wide surgical procedures can contribute to eating problems, difficulty opening the
mouth and swallowing dysfunctions. It is commonly assumed that surgery will
cause greater insult to function and QoL than nonsurgical intervention. El-Deiry
(2005) compared QoL of HNC patients in stage III or IV who accepted surgery and
postoperative radiation therapy (SRT) or concurrent chemotherapy and radiation
therapy (CRT) at least 12 months after treatment. The results indicated that patients in
the SRT group demonstrated worse speech outcomes than did patients in the CRT
group (El-Deiry, 2005). There were no significant differences within other domains
of QoL such as eating, discomfort, pain, or altered social function. Nevertheless,
patients in the CRT group had lower overall QoL scores and higher depressive
symptoms, which may be related to the unmet expectation of avoiding surgery.
El-Deiry concluded that QoL in these two groups was essentially the same and the
selection of treatments should be tailored to the individual and the tumor site.
Although physical and psychosocial aspects of QoL are often interrelated,
they may change in opposite directions. A study comparing QoL in 316 HNSCC
patients before initial treatment and 1 year after treatment reported a decline in
physical QoL and an improvement in mental health QoL (Ronis, Duffy, Fowler, Khan,
& Terrell, 2008). Major predictors of change in QoL from baseline to 1 year were
treatment-related factors (especially feeding tube placement), chemotherapy, and
18


radiation therapy. Smoking and depression were also significant factors in predicting
QoL one year post-treatment.
A qualitative research study evaluating 18 HNC survivors who were interviewed
about their problems in daily life indicated that physiological changes as well as
activities of daily living and participation in life were reported as equally important. It
was also noted that when asked about their problems, patients rarely mentioned
anatomical changes. This study emphasized the importance of psychological and
social factors in the recovery from HNC (Tschiesner, et al., 2009).
Similarly, Holloway et al (2005) assessed the relationship between physiological
and psychological factors and QoL in a cohort of 5-year HNC survivors. They
reported that psychosocial variables were even more important than physiological
variables in predicting QoL for long-term HNC survivors, particularly the factor of
premorbid pessimism. Those with less developed coping mechanisms had more
difficulty managing chronic side effects and reported lower QOL (Holloway, et al.,
2005).
Despite the fact that many cancer treatments are able to add years to life to
those who previously had little hope of survival, it is equally important recognize the
importance of QoL within the spectrum of survivrship (Miller & Triano, 2008). A
recent report from the Institute of Medicine (IOM) emphasized the importance of
caring for the whole patient (Adler, 2008). Holland et al. (2008) further emphasized
19


that cancer survivors should have a treatment plan, which includes attention to
potential psychosocial morbidity. The transition from active treatment to
post-treatment care is critical to survivors long-term health. If survivors
psycho-social problems can be identified early, they can be treated timely by a range
of evidence-based intervention (Holland & Weiss, 2008).
Health Locus of Control in Cancer Patients
Health Locus of Control: Definition and
Concept Development
Locus of control was originally conceptualized by Rotter (1966) as a general
expectancy for control of reinforcement. Individuals with high internal locus of
control believe that they can control the events that affect them. Conversely,
individuals with high external locus of control believe that events result primarily
from external circumstances such as others, chance or fate (Rotter, 1966). The
Internal-External Scale was developed to measure locus of control as a
unidimensional construct and classify individuals as primarily having an internal or
external locus of control.
Based on Rotters Internal-External construct, Wallston et al. (1976)
developed the Health Locus of Control (HLC) scale to predict health-related
behaviors (Wallston, Maides, & Wallston, 1976). However, Wallston et al. (1978)
20


found that empirical data did not support the one dimension of locus of control which
led to the development of the multidimensional health locus control (MHLC) scale.
It contains three independent dimensions in locus of control (Wallston, Wallston, &
Devellis, 1978). An internal locus of control indicates that people believe they are
responsible for their health. External-chance locus of control implies that people
feel that their health depends on luck or chance. External-powerful other locus of
control is the belief that others, such as health professionals, are responsible for ones
health. Wallston and colleagues asserted that assessing more than one dimension of
HLC would lead to an increased understanding of health behaviors.
Health Locus of Control and Health/Risk Behaviors
The concept of HLC has been widely adopted in research examining
health/risk behaviors in various kinds of illnesses. Evidence suggests that an
individuals commitment to self-caring behaviors corresponds to the strength of their
internal HLC. Once patients believe in their ability to control their health, they tend to
make decision which is related to better manage their illness. For example, a recent
study reported that patients with low back pain who visited complementary and
alternative medicine practioners had a higher Internal HLC score compared to those
who visited western medicine after controlling for other variables (Ono, et al., 2008).
Patients with internal HLC tend to believe that they have the ability to control
21


their health. Cross et al. (2006) examined the relationship between self-efficacy, HLC,
health status and medical expenditure among rheumatoid arthritis (RA) and
osteoarthritis patients (OA). The result revealed that OA patients with higher external
HLC reported worse pain and function, more visits to general practitioners and higher
medical expenditures (Cross, March, Lapsley, Byrne, & Brooks, 2006). These studies
suggested that when individuals perceive that they have control over their health
outcomes, they will take actions to prevent health problems.
Research has shown that HLC can influence how one perceives their medical
condition. One study examined 302 HIV-infected patients self-reports of HLC and
HRQOL (Preau, et al., 2005). The results found that those reporting a high number of
internal HLC beliefs at the initiation of treatment had better physical HRQOL in
the 44th month after treatment, while external-chance HLC beliefs were associated
with lower scores in HRQOL. It was suggested that patients beliefs in HLC should
be taken into consideration when developing intervention to improve patients coping
strategies.
Haynes (1991) compared drug misusers who attended a community drug
project and drug nonusers in their HLC scores. After controlling possible
confounding variables such as age or education, the result indicated that active
substance misusers were more likely to have comparably higher external HLC
scores than non-misusers (Haynes & Ayliffe, 1991). Similarly, individuals with
22


adverse health behavior, such as smoking and excess drinking, tended to have a
higher external HLC (Barth & Harter, 1996; Kuwahara, et al., 2004).
The influence of HLC on patients health or risk behaviors can be complex.
For instance, Andrykowski (1994) included contextual factors (disease severity and
history of treatment failure) as mediators when investigating how HLC affected
psychological distress in cancer patients preparing for bone marrow transplants. The
result indicated that patients with high powerful other HLC beliefs and a history of
treatment failure reported greater distress, while patients with a high internal HLC
and a history of treatment failure reported less distress (Andrykowski & Brady,
1994).
In HNC survivors, some examples of positive health behaviors include prompt
medical care seeking and smoking and drinking cessation after diagnosis. Tromp et al
(2005) investigated health behavior and HLC among 264 recently diagnosed HNC
patients and found that patients who delayed seeking medical care reported higher
levels of external HLC and lower levels of perceived health competence (Tromp, et
al., 2005). Patients who stopped drinking alcohol after their initial cancer diagnosis
had higher scores on internal HLC, which was found to be the most important
predictor of continued alcohol use (Brouha, Tromp, Hordijk, Winnubst, & De Leeuw,
2005).
23


Health Locus of Control and Physical
and Emotional Distress.
Past research suggests that locus of control plays an important role in the
mind-body link and that if may influence the regulation of physical and emotional
distress (Cross, et al., 2006; Graffeo & Silvestri, 2006). Individuals experience fewer
negative emotions to stressful situations when they perceive themselves as having
sufficient control over the situation. Bruke (2008) hypothesized that psychological
factors such as anxiety, hopelessness and locus of control may impact immune
responses that contribute to the acceptance or rejection of a transplanted kidney. He
investigated the association between various psychological factors and the outcome of
kidney transplant. The results indicated that the group that did not reject the
transplanted kidney reported more internal HLC beliefs while the group that
rejected the kidney reported more external HLC beliefs (Burke, 2008).
Two recent studies tested a mediation model related to HLC and
psychological outcomes. One study investigating the relationships between HLC and
breast cancer perceived risk found that only internal HLC beliefs were significantly
related to the perceived likelihood of remaining free of breast cancer (Rowe,
Montgomery, Duberstein, & Bovbjerg, 2005). Moreover, internal HLC beliefs were
mediated by an individuals belief they can control the development of breast cancer.
In other words, women who believe that they could control their own health and their
24


risk of breast cancer through their behaviors were more likely to report a lower
perception of breast cancer risk.
The other study examined the effects of scripts for masculinity (self-reliance
and emotional control) on the relationship between powerful-other HLC beliefs and
mental health in 230 male patients treated for prostate cancer (Burns & Mahalik,
2006). The results showed that patients with powerful other HLC beliefs and less
adherence to masculine scripts experienced positive mental health while patients who
endorsed masculine gender script and believed others were influential to their cancer
reported poor mental health.
Although a great deal of research has suggested Internal HLC is associated
with positive health outcomes and psychological well-being, other studies have noted
that when one is faced with a condition that is beyond human control, internal HLC
beliefs might lead to more distress. For example, a high internal HLC, advanced
education, high self-esteem and the ability to perform daily functioning of living
predicted positive affect in medical inpatients and recently diagnosed cancer patients
(Knappe & Pinquart, 2009). However, internal HLC only contributed to positive
affect in cancer patients when they were in sufficient physical condition to exert
control over their health.
There have been a few studies that have examined the association between
HLOC and physical and emotional variables in HNC patients. Age was reported to
25


be a factor that influences locus of control in HNC survivors. Younger HNC patients,
between 45 to 60 years of age, were found to use more active coping strategies and
perceived more internal control over the course of their disease (Derks, de Leeuw,
Hordijk, & Winnubst, 2005). In contrast, older patients, those more than 70 years of
age, tended to utilize religious coping more frequently, indicating that they believed a
spiritual power had some influence over ones health. In spite of the differences in
coping and the types of locus of control, this study found that there was no difference
in QoL and depressive symptoms between the two age groups.
The relationships between HLC and other demographic variables have also
been explored. Bettencourt (2008) found that for rural breast cancer patients,
powerful other HLC beliefs were reliably associated with lower levels of
depression. By contract, this association was reversed for women living in more
urban areas. Moreover, chance HLC were found to be negative associated with life
satisfaction in women living in urban area and internal HLC predicted lower levels
of depression among breast cancer patients regardless of whether they lived in rural
or urban settings (Bettencourt, Talley, Molix, Schlegel, & Westgate, 2008).
Additionally, lower education was significantly related to an external HLC (Cohen
& Azaiza, 2007) and social support was reported to be positively associated with an
internal HLC and negatively associated with an external HLC (Chen, Deng, &
Chang, 2001).
26


Summary
Based on the literature review, there have been a number of studies examining
substance use in HNC population. Most of these studies have focused on the
relationship between substance use and treatment outcome, survival, quality of life,
coping patterns, and depression. Many studies have investigated QoL in HNC patients,
emphasizing the impact of treatment side effects and psychological symptoms on
perceived QoL. There have also been a few studies examining the association
between continued substance use and QoL. Many studies have found that substance
use is associated with depression and both of them are related to lower QoL. Only
two studies found that moderated alcohol use is positively associated with better
physical function and suggested that moderate alcohol use might be an index of
recovery. Most studies indicated the importance of early detection of depression and
substance use. With early treatment of these risk factors, the improvement of QoL in
survivorship is expected.
Internal HLC were found to be positively correlated with health behaviors in
patients with various kinds of physical illness, such as patients with HIV, low back
pain, arthritis or cancer. Most of the studies suggested that when individuals perceive
they have control over their health, they tend to take action to prevent health
problems. In contrast, individuals with external HLC are inclined to develop risk
27


behaviors such as substance use. Other studies indicated that perceiving enough
control contributes to better psychological well-being. Nevertheless, contextual
factors as well as other possible mediators should be taken into consideration when
evaluating different kinds of HLC.
Few studies have investigated the association between HLC and substance use,
particularly in HNC survivors. In addition, the relationship between demographic
variables and substance use behaviors in HNC survivors is not very clear. The
present study intends to investigate the relationships between QoL, HLC and
continued substance use (alcohol and tobacco use) in HNC survivors. We are
particularly interested in how HLC may mediate the relationship between of QoL and
health risk behaviors.
28


CHAPTER 3
METHOD
Participants and Procedure
This study was based on an on-going survey research project that involves
longitudinal assessment of HNC survivors who recently completed cancer treatment.
Participants were recruited from three cancer centers (University of Colorado
Comprehensive Cancer Center, St. Marys cancer Center in Pueblo, Colorado, and St.
Josephs Cancer Center in Denver, Colorado).
In this study, forty-six HNC survivors completed the post-treatment
three-month follow-up survey. Inclusion criteria included age 18 to 99, a recent
diagnosis of HNC, initial treatment that included radiotherapy, and being conversant
in reading English.
Potential participants were contacted by a clinic staff member prior to their
3-month follow-up visit. If HNC survivors were interested and met criteria,
informed consent was obtained and the participant completed the self-report survey in
a private location within the medical clinic. Please see Appendix A for a sample of the
survey instrument.
29


Domains Included in the Survey Instrument
Demographics
Demographic data included gender, age, marriage and relationship status,
household income, education level, and ethnicity.
High Risk Health Behaviors (Continued
Alcohol and Tobacco Use)
The amount and frequency of current and past alcohol and tobacco use were
assessed.
Quality of Life (Emotional and
Physical Well-Being)
Emotion well-being was measured via a list of psychosocial concerns found to
be important to HNC survivors. The degree of concern was assessed with a 5-point
Likert scale ranging from Not at All, A Little, Somewhat, Quite a bit and
Very Much. Participants were asked to rate a number of emotional concern
including anxiety, depression, anger, fear of recurrence, adjusting to a new sense of
uncertainty and the extent to which they were bothered by their appearance.
Physical well-being was measured via a list of 16 potential treatment side-effects or
symptoms such as pain, fatigue, and nausea.
30


Health Locus of Control
The Multidimensional Health Locus of Control Scale (MHLC) is an 18-item
self-report questionnaire that measures dimensions of internal, external and
power other HLC. The MHLC assesses an individuals belief that their general
health is or is not determined by their own behaviors. A 6-point Likert scale ranging
from 1 (strongly disagree) to 6 (strongly agree) is used to record responses on the
MHLC. Each dimension of HLC has 6 items. The Cronbach a for each dimension
is as follows: internal HLC, a= .67; external HLC, a= .60; and Powerful Other HLC,
a= .61 (Wallston, et al., 1978).
Purposes and Hypotheses
Aim 1: Identify the relationships between continued substance use and demographic
(age, education, Socio-economic status) and medical variable (cancer stage).
Hypothesis 1.1: Older HNC survivors are more likely to continue to use alcohol
and tobacco three months post-treatment.
Hypothesis 1.2: HNC survivors with higher education levels are less likely to
continue to use alcohol and tobacco three months
post-treatment.
Hypothesis 1.3: HNC survivors with lower socio-economic status are more
likely to continue to use alcohol and tobacco three months
31


post-treatment.
Hypothesis 1.4: HNC survivors with early stage cancer are more likely to
continue to use alcohol and tobacco three months
post-treatment.
Aim 2: Examine the relationship between QoL (emotional and physical well-being)
and continued use of alcohol and tobacco.
Hypothesis 2.1: Continued use of alcohol and tobacco will be negative
associated with physical well-being (QoL) three months
post-treatment.
Hypothesis 2.2: Continued use of alcohol and tobacco will be negative
associated with emotional well-being (QoL) three months
post-treatment.
Aim 3: Examine the association between HLC, QoL and continued alcohol and/or
tobacco use and test the mediation model with HLC (Figure One).
Hypothesis 3.1: An internal HLC is positively associated with higher QoL
scores three months post-treatment.
Hypothesis 3.2: An internal HLC is negatively associated with continued use
of alcohol or tobacco three months post-treatment.
32


Data Analyses
To examine the relationship between continued substance use and demographic,
point-biserial correlation coefficient was utilized. Age, education levels,
socio-economic status and stages of cancer were regarded as continuous variables
while use/not use of alcohol/tobacco was a dichotomous variable with no underlying
continuum.
Similiarly, to fulfill Aim Two, point-biserial correlation coefficient analysis
was adopted to examine the relationships between physical/emotional well-being and
use/not use of alcohol/tobacco. Physical and psychological well-being was
represented in either the total numbers of concerns the participants endorsed or the
severity of their concern.
To fultill Aim Three, Pearsons correlation coefficient was utilized to examine
the relationship between QoL (Phsyical and Psychological Well-being) and internal
HLC. To test hypothesis 3.2, point-biserial correlation coefficient was used to
examine the relationship between internal HLC and continued use or not use of
alcohol/tobacco.
33


CHAPTER 4
RESULTS
Table 1 displays the participants demographic data. The majority of the
participants were middle-age white males. Their age ranged from 33 to 89 years old
with a mean age of 57.5 years. Almost half of the participants were married and
more than half of the sample had completed at least some college. The range of
annual income was $25,001 to $50,000. The cancer stage ranged from Stage I to
Stage IV. In terms of risk behaviors, among the 46 participants, 37% (n=17)
continued to use alcohol and 17.4 % (n=8) continued to use tobacco following their
cancer treatment.
Table 1: Demographic data
N Percentage
Gender
Male
Female
40
6
87.0
13.0
Age
<40
41-50
51-60
61-70
>70
Missing
2
6
19
13
1
5
4.3
13.0
41.3
28.3
2.2
10.9
Relationship Status
Married
Divorced
Separated
22
16
2
47.8
34.8
4.3
34


Table 1 (Cont.): Demographic data
N Percentage
Never Married 5 10.9
Missing 1 2.2
Education
No school 1 2.2
Grades 1-8 1 2.2
Grades 9-11 1 2.2
High School 12 26.1
College 1-3 years 15 32.6
College graduate 9 19.6
Graduate degree 7 15.2
Annual Income
0-$10,000 5 10.9
$10,001-25,000 13 28.3
$25,001-50,000 7 15.2
$50,001-75,000 11 23.9
$75,001-100,000 2 4.3
>$100,000 8 17.4
Ethnicity
White 37 80.4
Hispanic 5 10.9
Black 1 2.2
Asian 1 2.2
American Indian 1 2.2
Missing 1 2.2
Stage
I 8 17.4
II 7 15.2
III 5 10.9
IV 14 30.4
Missing 12 26.1
Note. Missing indicates that the participants did not
report their data in the specific variable
35


Table 2 indicates the numbers and percentage in demographic and medical
variables in continued use or not use alcohol and tobacco. In Table 3, point -biserial
correlation coefficient shows that continued use of tobacco was negatively associated
HNC survivors annual income, indicating that participants with lower annual income
were more inclined to use tobacco at three months post-treatment (r=-.25, p< 05)
while continued use of alcohol or tobacco was not significantly associated with HNC
survivors age, education and cancer stage.
Table 2: Demographic and medical variables vs continued use/not use alcohol/tobacco
Alcohol Tobacco
Variables Total N Use N (%) Not Use N (%) Missing N (%) Use N (%) Not Use N (%) Missing N (%)
Total 46 17(37.0) 27(58.7) 2(4.3) 8(17.4) 37(80.4) 1(2.2)
Gender
Male 40 15(37.5) 23(57.5) 2(5.0) 6(15.0) 33(82.5) 1(2.5)
Female 6 2(33.3) 4(66.7) 0(0) 2(33.3) 4(66.7) 0(0)
Age
<40 2 0(0) 2(100) 0(0) 0(0) 2(100) 0(0)
40-60 25 11(44.0) 13(52.2) 1(4.0) 5(20.0) 19(76.0) 1(4.0)
>60 14 4(28.6) 10(71.4) 0(0) 3(21.4) 11(78.6) 0(0)
Missing 5 2(40.0) 2(40.0) 1(20.0) 0(0) 5(100) 0(0)
Education
College 24 9(37.5) 15(62.5) 0(0) 4(16.7) 19(79.2) 1(4.2)
Graduate 7 4(57.1) 2(28.6) 1(4.3) 1(14.3) 6(85.7) 0(0)
36


Table 2 (Cont.): Demographic and medical variables vs continued use/not use
alcohol/tobacco
Alcohol Tobacco
Variables Total N Use N (%) Not Use N (%) Missing N (%) Use N (%) Not Use N (%) Missing N (%)
Income
<25,000 18 5 (27.8) 13(72.2) 0(0) 5(27.8) 12(66.7) 1(5.6)
25,00050,000 18 6 (33.3) 10(55.6) 2(11.1) 1(5.6) 17(94.4) 0(0)
>50,000 10 6(60.0) 4(40.0) 0(0) 2(20.0) 8(80.0) 0(0)
Stage
I 8 4(50.0) 4(50.0) 0(0) 1(12.5) 7(87.5) 0(0)
II 7 4(57.1) 2(28.6) 1(14.3) 2(28.6) 5(71.4) 0(0)
III 5 2(40.0) 3(60.0) 0(0) 0(0) 5(100) 0(0)
IV 14 3(21.4) 11(78.6) 0(0) 2(14.3) 11(78.6) 1(7.1)
Missing 12 4(33.3) 7(58.3) 1(8.3) 3(25.0) 9(75.0) 0
Note. Missing in Alcohol or Tobacco indicates that participants did not report whether they continued
to use Alcohol/Tobacco or not. Missing in Age indicates that five participants did not report their age
and missing in Stage indicates 12 participants did not report their cancer stage.
In terms of physical side-effects, survivors who reported higher severity scores
were more likely to use alcohol three months post-treatment (r=.26, p<05) while
survivors who endorsed a greater numbers of physical side effects (r=-.28 p<05) and
those who reported a greater numbers of emotional concerns (r=-.29 p<05) were less
likely to use tobacco three month post-treatment (Table 4).
In Table 5, the Pearson correlation coefficient indicates that all of the assessed
aspects of quality of life (the number and the severity of physical site effect and
37


emotional concern) were negatively associated with Internal-Health Locus of Control
(Intemal-HOLC) (r=-.37, -.39, -.39 and -.27, all p < 05). Interestingly, as seen in
Table 6, survivors who obtained higher scores in the area of Intemal-HLOC were
more likely to continue using tobacco (r=.27, p<05).
Table 3: Demographic and medical variables vs continued use/
not use alcohol/tobacco
Point-Biserial Correlation Coefficient
Drink not Drink Smoke not Smoke
Age .02 .02
Sig .44 .46
N 41 40
Education .08 -.10
Sig. .31 .25
N 46 45
Annual Income .09 -.25*
Sig. .28 .05
N 46 45
Tumor Stage .12 .11
Sig. .22 .23
N 46 45
* Correlation is significant at the 0.05 level (l-tailed).
38


Table 4: Correlation: quality of life vs use/ not use alcohol/tobacco
Point-Biserial Correlation Coefficient
Drink not Drink Smoke not Smoke
Physical Well-being .14 -.28*
Total # of Sig .17 .03
Side Effects N 46 45
Physical Well-being .26* -.16
Severity of Sig. .04 .15
Side Effects N 46 45
Emotional Well-being .18 -.29*
Total # of Sig. .12 .03
Emotional Concerns N 46 45
Emotional Well-being .13 -.15
Severity of Sig. .20 .17
Emotional Concerns N 46 45
* Correlation is significant at the 0.05 level (l-tailed).
Table 5: Internal-HLOC vs quality of life
Pearson Correlation Coefficient
Physical Well-being Total # of Side Effects Physical Well-being Severity of Side Effects Psychological Well-being Total # of Emotional Concern Psychological Well-being Severity Emotional Concern
Intemal-HLOC _ 37** _ 39** _ 39** -.27*
Sig .008 .006 .005 .045
N 41 41 41 41
^Correlation is significant at the 0.05 level (l-tailed). ^Correlation is at the 0.01 level.
39


Table 6: Internal-HLOC vs use/not use alcohol/tobacco
Point-Biserial
Correlation Coefficient
Drinknot Drink Smokenot Smoke
r Internal-HLOC . Sig -.14 .27*
.204 .049
N 39 40
* Correlation is significant at the 0.05 level (l-tailed).
40


CHAPTER 5
DISCUSSION AND CONCLUSIONS
The results of this study were mixed in terms of supporting our original
hypothesis. Given that this study focused on the continued use of tobacco and
alcohol in HNC survivors, it is important to note that the percentage of continued use
of alcohol and tobacco in our head and neck survivors was within the range reported
in the literature (Leon et al., 2002; Miller et al., 2008). Thus we feel that many of
our findings can be compared to other studies that have examined these questions.
Our first aim focused on the relationship between continued substance use and
demographic variables. Annual income was the only demographic variable that was
significantly related to maladaptive health behaviors. Less annual income was
associated with increased likelihood of continuing to use tobacco. Previous study
found that people with lower education or income had higher score in External-Health
Locus of Control (Cohen & Azaiza, 2007), which indicated that if people attribute
their health result to the influence of external reason such as luck or chance, they tend
to exhibit more risk behaviors. According to Wallston, et al. (1978), Internal- and
Extemal-HLOC can be in two independent dimensions. Other study pointed out that
people used Internal- and Extemal-HLOC alternatively depending on whether the
situation was controllable or not (Knappe & Pinquart, 2009). Although
41


Extemal-HOLC was not included in the present study, further analysis in this study
showed that education and income were negatively associated with Extemal-HLOC
(r=-.31 and r=-.47, p< 05), giving more explanation of the association between low
income and continued use of tobacco.
Our second aim involved the association between quality of life and continued
use of alcohol/tobacco. Participants who reported more severity of side effects,
suggesting lower quality of life, tended to use alcohol post-treatment. Interestingly,
the opposite association was found with continued use of tobacco such that
participants who reported more numbers of physical side effects and more emotional
concerns were less likely to use tobacco. The results of the current study reflected
the mixed findings in previous studies.
Aarstad et al. (2007) reported that survivors who reported more severe side
effects tended to use alcohol as a way of coping. In contract, Allison (2002) reported
that alcohol consumption was found to be associated with better physical function and
lower level of symptoms in 191 HNC survivors who finished treatment within four
years, indicating that consuming alcohol in moderation post-cancer treatment may be
a marker of better recovery and quicker resumption of pre-treatment activities.
Given that the use of alcohol may or may not represent problematic behaviors, future
research in this area should seek to determine not only the amount of alcohol
consumed, but the context under which the alcohol is consumed. An improved
42


understanding of how continued alcohol consumption may or may not represent
maladaptive coping behaviors will increase our understanding of how alcohol
consumption is associated with post-treatment recovery and risk of recurrence in head
and neck cancer survivors.
In terms of tobacco use, we found that survivors who had poor quality of life
(more psychological concerns and more side effects) seemed to smoke less.
Nevertheless, previous study showed that the level of smoking was a predictor of
psychological distress and associated with poorer quality of life in HNC survivors
(Humphris & Rogers, 2004). One reason to explain the difference is that we only
examined smoking behavior in the three-month post-treatment while the previous
study recorded smoking behavior at 4 time points from three to fifteen-month after
treatment. Survivors in our study were at the beginning phase of their survivorship.
They might concern the negative influence of tobacco when they perceived more side
effects and psychological concerns.
Based on our findings, continued use of alcohol and tobacco should be
regarded as separate risk behaviors that may be associated with different recovery
outcomes. Additionally, the factors that reinforce these behaviors may be quite
different. It is likely that the use of alcohol and/or tobacco as a means of coping
with distress may lead to more problematic recovery following treatment. It is
suggested that future studies assess not only the quantity of alcohol and tobacco
43


consumption, but also examine coping behaviors, the survivors knowledge and
understanding of the perceived risks, and the survivors' reasons for continuing or
resuming the use of these substances.
Our third aim was to examine the associations between health locus of control,
quality of life and continued use of tobacco and/or alcohol. The results of this study
support the hypothesis that Intemal-HLOC would be positively associated with
Quality of Life. Consistent with previous studies (Preau, et al., 2005), HNC
survivors with higher Intemal-HLOC experience reported fewer and less severe
physical and emotional symptoms.
In terms of the relationship between HLOC and maladaptive health behaviors,
we found that HNC survivors with higher scores on the Internal-HLOC scale tended
to continue to use tobacco. Intemal-HLOC was not significantly associated with
continued use of alcohol. The association between Internal-HLOC and tobacco use
is opposite of what we hypothesized, implying that survivor who thought their
behaviors would influence their health outcome tended to use tobacco in three-month
post-treatment. This result suggests that the relationship between HLOC and health
behaviors might be more complicated. Other factors such as survivors' knowledge
of the effect of tobacco, perception of recurrence and way of coping might affect
survivors' decision of continued use tobacco.
This study includes a number of limitations. The small sample size is an
44


obvious limitation. Additionally, only those participants who were coming in for
their 3-month radiation oncology follow-up were asked to participate in the project
such that we have no information about those survivors who did not return to the
clinic for their 3 month follow-up. Lastly, we have no information regarding the
number and the characteristics of the HNC survivors who were approached but chose
not to participate in this study. These issues limit our ability to generalize these
findings to other head and neck cancer populations.
This study suggests a number of future directions for research in this area.
Although our findings are intriguing, they are cross-sectional and tell us nothing
about the longitudinal aspects of post-treatment recovery and continued substance use
in this population. We know that many of the side-effects of HNC treatment can
continue for weeks and months following the cessation of treatment. Other studies
of HNC survivors (Corry, 2009; Lango et al, 2010) as well as discussions with our
colleagues in oncology suggest that a large majority of HNC survivors are still using
feeding tubes 3 months post-treatment. Therefore, it is likely that many HNC
survivors are unable to drink liquid three months post-treatment which suggests that
the percent of HNC patients who resume alcohol consumption may continue to
increase as their recovery of swallowing function improves. A longitudinal study
examining the relationship between physical side effects, psychological factors,
recovery of function and health behaviors will improve our understanding of
45


post-treatment risk behaviors and adherence to medical recommendations in HNC
survivors.
46


APPENDIX
A. QUESTIONNAIRE
Head and Neck Cancer Survivorship Questionnaire
_____________________________________General Instructions_____________________________________
Please take your time and answer all questions as best you can. If the responses included in
this survey do not fit your answer exactly, please select the best answer for you.
For some questions, you may have to write an answer. Please print your answer carefully so
that we can read it.
Most of the questions in this survey ask you to select only one answer. However, some
questions allow you to select more than one answer. Please watch for these questions, which
will indicate that you can Check All That Apply to you.
Other questions in this survey will have two sections. Please be sure to answer both sections.
Also, please remember that there are no right or wrong answers to the questions in this survey.
The best answers you can give are the ones that are most correct for you.
When you complete this survey, please place in the stamped envelope provided for you and
mail it back to us.
I. Background Information about You
1) Date_________________________________
2) Name (please print first, middle and last name):
3) Are you male or female? Male Female
4) What is your current age?
5) Which one or more of the following would you say is your race?
White non-Hispanic
Hispanic/Latino
Black or African American
o Asian
Native Hawaiian or other Pacific Islander
American Indian or Alaskan Native
n other:__________________________
6) Are you (check onek
Married or living as an unmarried couple
n Divorced
Widowed
Separated
Never married
47


HNC Survivorship Survey Dr. Kristin Kilbourn
7) What is the highest grade or year of school you have completed (check onet?
Never attended school or only kindergarten
Grades 1-8 (elementary school)
Grades 9-11 (some high school)
Grade 12 orGED (high school)
College, 1-3 years (some college or technical school)
College, 4 or more years (college graduate)
Graduate Degree
8) Approximately what is your annual household income in thousands?
0-$10,000
$10,001 -$25,000
$25,001 $50,000
$50,001 $75,000
$75,001 -$100,000
$100,000+
9) What was the approximate date of your last head and neck cancer treatment?_____
10) What was the site of your tumor?______________________________
11) What was the stage of your tumor?_____________________________
12) Did you have any specific cancer risk factors? Check all that apply:
smoking tobacco
chewing tobacco
alcohol use
Human Papillomavirus (HPV)
family history
environmental exposure to toxic substances
other___________________________
13) What treatment(s) did you receive for your head and neck cancer? Check all that apply:
surgery
chemotherapy
radiation therapy
other____________
14) Did you have at least one person outside of the healthcare system that helped and
supported you throughout your diagnosis and treatment (please circle)?
Yes No
If yes, please circle how helpful they were throughout your diagnosis and treatment.
0 12 3 4
Not at all A little helpful Somewhat helpful Quite a bit Very helpful
- 2-
48


HNC Survivorship Survey Dr. Kristin Kilbourn
II. Health Habits
Exercise
Do you exercise?
Yes
No
If yes, what type of exercise do you do?__________________________________
How many times a week?____________________________________________________
For how long?_____________________________________________________________
Alcohol/Druas
Have you ever or do you currently drink alcohol?
Yes, currently
Yes, only in the past
No
On average, how many days per week do you drink alcohol?_____________________________
On the days that you drink, on average, how many drinks do you have?_________________
Have you ever used any recreational or street drugs? (i.e. marijuana, cocaine, heroin, other)
Yes, regular use
Yes, occasional use
D Yes, no longer use
Never
Tobacco
Have you smoked at least 100 cigarettes in your life? Yes No
Have you smoked a cigarette, even a puff, in the last 7 days? Yes No
Throughout the time you have smoked, what was the average number of cigarettes you
smoked per day:_________________________________________________________
How many years in total have you smoked?________________________________
Phvsica Well-Being
How would you rate your overall physical health? Excellent Very Good Good Fair Poor
- 3 -
49


HNC Survivorship Survey Dr. Kristin Kilbourn
III. Current Problems and Concerns
14) Circle one number to indicate how much you are currently experiencing the
following treatment side-effects and/or symptoms.
Cancer T reatment
Side-Effects/Symptoms Not at All A Little Somewhat Quite a bit Very Much
a) Pain / Numbness 0 1 2 3 4
b) Fatigue 0 1 2 3 4
c) Nausea / Vomiting / Diarrhea 0 1 2 3 4
d) Problems producing saliva (too much or too little) 0 1 2 3 4
e) Problems swallowing 0 1 2 3 4
f) Communication problems / speech 0 1 2 3 4
g) Difficulty breathing 0 1 2 3 4
h) Weight loss 0 1 2 3 4
i) Sleep Problems 0 1 2 3 4
j) Problems with smell or taste 0 1 2 3 4
k) Memory or concentration problems 0 1 2 3 4
I) Physical disfigurement 0 1 2 3 4
m) Feeding tube problems 0 1 2 3 4
n) Limited physical movement 0 1 2 3 4
o) Mouth sore / gum/ teeth problems 0 1 2 3 4
p) Skin problems 0 1 2 3 4
m) Other, please specify: 0 1 2 3 4
- 4-
50


HNC Survivorship Survey Dr. Kristin Kilbourn
15) How much has your cancer experience affect the following relationships?
Family & Social Relationships Very A Little Not at all A Little Very Much
Much Negative Positive Positive
Negative_______________________________________________
a) Relationship with spouse/partner 0 1 2 3 4
b) Relationship with children 0 1 2 3 4
c) Relationship with other family 0 1 2 3 4
d) Relationship with friends 0 1 2 3 4
e) Relationship with co- workers 0 1 2 3 4
f) Relationship with medical staff 0 1 2 3 4
g) Relationship with otherfs), please specify: 0 1 2 3 4
16) Circle one number to indicate how much you are currently experiencing the
following emotional problems or concerns related to having cancer.
Emotional concerns Not at All A Little Somewhat Quite a bit Very Much
a) Anxiety 0 1 2 3 4
b) Depression 0 1 2 3 4
c) Anger 0 1 2 3 4
d) Fear of recurrence 0 1 2 3 4
e) New sense of uncertainty 0 1 2 3 4
f) Bothered by my appearance 0 1 2 3 4
g) Other, please specify: 0 1 2 3 4
-5-
51


HNC Survivorship Survey Dr. Kristin Kilbourn
17) How concerned are you about the following health issues?
Health Concerns Not at All A Little Somewhat Quite a bit Very Much
a) Tobacco Use 0 1 2 3 4
b) Alcohol or Substance Use 0 1 2 3 4
c) Maintaining a healthy diet 0 1 2 3 4
d) Maintaining an exercise program 0 1 2 3 4
e) Other, please specify: 0 1 2 3 4
18) Please indicate how true each statement is about your spiritual beliefs.
Spiritual Concerns Not at All A Little Somewhat Quite a bit Very Much
a) I feel peaceful 0 1 2 3 4
b) I find comfort in my faith or spiritual beliefs 0 1 2 3 4
c) Having cancer has strengthened my faith or spiritual beliefs 0 1 2 3 4
d) My life lacks meaning and purpose 0 1 2 3 4
e) I have a reason for living 0 1 2 3 4
f) I know that whatever happens with my illness, things will be okay. 0 1 2 3 4
g) My illness has taught me that everyone has a purpose in life. 0 1 2 3 4
- 6-
52


HNC Survivorship Survey Dr. Kristin Kilbourn
19) How concerned are you about the practical issues listed below?
Practical Concerns Not at All A Little Somewhat Quite a bit Very Much
a) Work or school 0 1 2 3 4
b) Housing 0 1 2 3 4
c) Health Insurance 0 1 2 3 4
d) Financial 0 1 2 3 4
e) Child or elder care 0 1 2 3 4
f) Other, please specify: 0 1 2 3 4
Emotional Well-Beina
How would you rate your overall emotional health? Excellent Very Good Good Fair Poor

20) During your most recent radiation follow-up visit, how satisfied were you with the
information and help you received regarding your most important concerns? Circle the best
response below.
0 1 2 3 4
Not at ail A little satisfied Somewhat satisfied Quite a bit Very much
satisfied satisfied
21) Please indicate how much you agree with the following statement
Having cancer has made me more concerned about my health.
0 1 2 3 4
Strongly Disagree Neutral Agree Strongly
Disagree Agree
- 7-
53


HNC Survivorship Survey Dr. Kristin Kilbourn
IV. Use of Support Services
22) Please indicate whether you have used the following services since your cancer
diagnosis. If you did use the service, please indicate how helpful that service was for you. If
not, please indicate if you would be interested in this service.
If yes, please indicate how helpful this If no, would
service was for you. you be
interested in
this service?
Used service? Not helpful A little Some what Quite a bit Very helpful
a) Social worker/patient navigator/case manager No Yes 0 1 2 3 4 No Yes
b) Chaplain/spiritual care provider No Yes 0 1 2 3 4 No Yes
c) Psychologist/counselor No Yes 0 1 2 3 4 No Yes
d) Cancer Information & Counseling Line No Yes 0 1 2 3 4 No Yes
e) Center for Integrative Medicine or Healing Arts Program No Yes 0 1 2 3 4 No Yes
f) Art therapy No Yes 0 1 2 3 4 No Yes
g) Support Groups No Yes 0 1 2 3 4 No Yes
h) Classes/education programs No Yes 0 1 2 3 4 No Yes
i) Nutritionist/Dietician No Yes 0 1 2 3 4 No Yes
j) Cancer Resource Center/Library No Yes> 0 1 2 3 4 No Yes
k) Clinical Trials No Yes 0 1 2 3 4 No Yes
k) Other, please specify: No Yes 0 1 2 3 4 No Yes
8-
54


HNC Survivorship Survey Dr. Kristin Kilbourn
23) Do you feel you have adequate support to help you cope with post-treatment issues?
yes no
24) Would you like to get more support from others to help you cope with your survivorship
issues and concerns?
Yes No
25) Would you be interested in attending a general health clinic that offers extra help for
cancer survivors?
Yes No Not sure/Dont know
26) Do you have a living will?
Yes No
Would you like more information about this?
Yes No
27) Do you have questions or concerns about end-of-life issues?
Yes No
Would you like more information about this?
Yes No
- 9-
55


HNC Survivorship Survey Dr. Kristin Kilbourn
V. Health Care Behavior
For each item, indicate how true each statement is for you. There is no consensus about right
and wrong attitudes on these items.
1 2 3 4 5
Strongly disagree Disagree Neutral Agree Strongly agree
_28. If I get sick, it is my own behavior which determines how soon I will get well again.
_29. No matter what I do, if I am going to get sick, I will get sick.
_30. Having regular contact with my physician is the best way for me to avoid illness.
_31. Most things that affect my health happen to me by accident.
_32. Whenever I dont feel well, I should consult a medically trained professional.
_33. I am in control of my health.
_34. My family has a lot to do with my becoming sick or staying healthy.
_35. When I am sick, I am to blame.
_36. Luck plays a big part in determining how soon I will recover from illness.
_37. Health professionals control my health.
38. My good health is largely a matter of good fortune.
39. The main thing that affects my health is what I myself do.
_40. If I take care of myself, I can avoid illness.
_41. When I recover from an illness, its usually because other people (for example, doctors,
nurses, family, and friends) have been taking good care of me.
_42. No matter what I do, Im likely to get sick.
_43. If it is meant to be, I will stay healthy.
_44. If I take the right actions, I can stay healthy.
45. Regarding my health, I can only do what my doctor tells me to do.
- 10-
56


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Full Text

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THE ASSOCIATION BETWEEN HIGH RISK BEHAVIOR AND HEALTH LOCUS OF CONTROL IN HEAD AND NECK CANCER SURVIORS by Shih-Ming Shih B.A., National Taiwan University, 1994 M.A., National Dong Hwa University, 1999 A thesis submitted to the University of Colorado Denver in partial fulfillment of the requirements for the degree of Master of Arts Clinical Psychology 2012

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This thesis for the Master of Arts degree by Shih-Ming Shih has been approved by Kristin Kilbourn Evelinn Borrayo Jim Grigsby

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Shih, Shih-Ming (Master of Arts, Clinical Psychology) The Association between High Risk Behavior and Health Locus of Control in Head and Neck Cancer Survivors Thesis directed by Assistant Professor Kristin Kilbourn ABSTRACT Continued substance use is regarded as an important risk factor for c ancer survivor, but how it associates with quality of life or other psychological factors is not clear. The main purpose of this study is to investigate the relationships bet ween continued alcohol/tobacco use, internal health locus of control (I-HLOC) and qua lity of life (QoL). Forty-six head-and-neck cancer survivors were recruite d in this study. Point-biserial correlation coefficient analysis and PearsonÂ’s correlation coefficient were utilized to examine the relationships. The results indicat ed that continued use of tobacco was negatively associated with QoL but positively with IHLO, while continued use of alcohol was positively associated with physical we ll-being. The results suggest that continued use of alcohol and tobacco should be regarded a s separate risk behaviors, and the relationship between HLOC and risk be haviors might be more complicated. This abstract accurately represents the content of the candidateÂ’ s thesis. I recommend its publication. Approved: Kristin Kilbourn

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ACKNOWLEDGMENT My thanks to my advisor, Kristin Kilbourn, for her contribution and support to my research. I also wish to thank Evelinn Borrayo and Jim Grigsby fo r their valuable participation and insights.

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v TABLE OF CONTENTS Tables................................................................................................................... vii CHAPTER 1 INTRODUCTION.................................................................................... 1 From a Cancer Patient to a Survivor................................................. 2 Cancer Survivors Research: What are the Understudied Areas in HNCS................................................................................................ 3 2 REVIEW OF THE LITERATURE........................................................... 6 Health Risk Behaviors in Head and Neck Cancer............................. Alcohol and Tobacco Use in Head and Neck Cancer.................. Alcohol and Tobacco Use as a Coping Mechanism.................... 6 6 9 Quality of Life, Psychological Distress and Treatment-Rel ated Side Effects........................................................................................ Factors Affecting Quality of Life in HNC Survivors................... Psychological Distress in HNC Survivors.................................... Treatment Side-Effects in HNC Survivors................................... 11 11 12 16 Health Locus of Control in Cancer Patients...................................... Health Locus of Control: Definition and Concept Development Health Locus of Control and Health/Risk Behaviors.................. Health Locus of Control and Physical and Emotional Distress.. 20 20 21 24 Summary............................................................................................ 27 3 METHOD................................................................................................. 29 Participants and Procedure................................................................. 29 Domains Included in the Survey Instrument...................................... Demographics............................................................................... 30 30

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vi High Risk Health Behaviors (Continued Alcohol and Tobacco Use)............................................................................................. Quality of Life (Emotional and Physical Well-Being) ................ Health Locus of Control............................................................... 30 30 31 Purposes and Hypotheses................................................................... 31 Data Analyses..................................................................................... 33 4. RESULTS................................................................................................. 34 5. DISCUSSION AND CONCLUSIONS.................................................... 41 APPENDIX 47 A. QUESTIONNAIRS.................................................................................. 47 REFERENCES.................................................................................................. 57

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vii LIST OF TABLES Table 1 Demographic Data.................................................................................... 34 2 Demographic and Medical Variables vs Continued Use/not Use Alcohol/Tobacco....................................................................................... 36 3 Demographic and Medical Variables vs Continued Use/ Not Use Alcohol/Tobacco....................................................................................... 38 4 Correlation: Quality of Life vs Use/ Not Use Alcohol/Tobacco.............. 39 5 Internal-HLOC vs Quality of Life............................................................ 39 6 Internal-HLOC vs Use/Not Use Alcohol/Tobacco................................... 40

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1 CHAPTER 1 INTRODUCTION In 2004, there were an estimated 10.7 million cancer survivors which represent 3.5% of the United States population (Travis & Yahalom, 2008). With the incr easing survival rate as well as the number of survivors living with canc ers, cancer is now viewed as a chronic illness, which is prolonged and might not be cure d completely (Aziz, 2007). The quality of cancer survivorship care and the transit ion from a cancer patient to survivor have acquired more attention in the past few ye ars (Holland & Reznik, 2005, Stanton et al., 2005). There have been a number of national reports such as Childhood Cancer Survivorship: Improving Care and Quality of Life and From Cancer patients to Cancer Survivor: Lost in Transition (the Institute of Medicine, 2003, 2005), A National Action Plan for Cancer Survivorship to Advance Public Health Strategies (Centers for Disease Control and Pre vention, 2004), emphasizing the needs of cancer survivors. Rowland et al. (2006) stated that cancer survivorship should be regarde d as a distinct phase of cancer care and we should act to deliver an appropri ate survivorship care given that the difficulties they face are very differe nt from cancer patients in treatment (Rowland, Hewitt, & Ganz, 2006). There is a strong need for collaboration among researchers, clinicians, survivors and their loved ones to elimi nate undue

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2 suffering and promoting optimal health-related quality of life (Q oL) for all cancer survivors (Rowland & Stefanek, 2008). From a Cancer Patient to a Survivor The feelings of a cancer patient are complex, following the comple tion of treatment. A survivor is relieved to finish treatments but at the same time, is worried about the unknown challenges in the future. During cancer treatment, the goal for the oncology patients is to get through the treatment(s) while minimi zing life disruption. The emotions that are often associated with a diagnosis of cancer may be repressed until cancer treatment is complete. (M. E. Hewitt, Bamundo, Day, & Harvey, 2007). As a result, cancer survivors often experience a range of emoti ons following completion of primary cancer treatment and as they transition int o the early stages of cancer survivorship. Stanton (2005) pointed out four myths of treatment completion, including “I should be celebrating,” “I should feel well,” “I should be the pre-ca ncer me,” and “I should not need support” (Stanton, et al., 2005). Cancer survivors often experience a sense of uncertainty and general anxiety following the completi on of treatment. Survivors begins to realize that the “pre-cancer me” no longer ex ists and a new identification of self may begin to emerge. In addition, family members and friends may discontinue active support because they feel that the survivor i s now fine. These

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3 are just a few of the challenges at the beginning of the reentry period in cancer survivorship. Cancer survivors’ transitional experiences have been described i n a number of qualitative studies. One study interviewed 55 older adults (65 to 81 ye ars old) who finished chemotherapy and radiation in the first and third months of t reatment (Towsley, Beck, & Watkins, 2007). It was found that “learning to live w ith it (cancer)” was the core theme at the beginning of their transit ion to survivorship. The process was dynamic and affected by survivors’ previous life ex periences, attitudes, positive and negative intervening factors such as social support syste m and physical factors, and their coping strategies. They hypothesized that once survivors achieve a new balance in their lives, they may gain a new perspective of what is important to them. This process is complex and in constant flux. Research with b reast cancer survivors’ transitioning into the stage of early survivorship indicat ed that although positive life changes are part of their experience, emotional distr ess, fear of recurrence, and difficulty returning to a “normal” life are s alient issues that survivors strive to overcome (Allen, Savadatti, & Levy, 2009). Cancer Survivors Research: What are the Understudied Areas in HNCS Rowland has stated that in the new millennium, the realm of survivors hip research should encompass the entire cancer control continuum which incl udes

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4 prevention (promoting health behaviors, physical activity), detection ( screening for second cancer, adherence to follow-up care) and treatment manageme nt of side/late effects (pain, cognitive function) (Rowland, 2007). Aziz (2007) pointed out tha t the trend of survivorship research is moving from a descriptive nature ( hypothesis generating) toward analytic study designs (hypothesis test ing), clinical trails and intervention research. The new, evolving paradigm of cancer survivorsh ip research will include studying adverse sequelae of treatments, understanding the impact of comorbidities, developing and testing health promotion and lifestyle i nterventions, developing care guidelines for survivors and exploring the impact of c ancer on the family (Aziz, 2007). One important understudied area is elder cancer survivors. Of the curr ent 10 million cancer survivors, 60% are older than 65 years old, and more t han 16% of U.S. adults aged 65 years are cancer survivors (M. Hewitt, Rowland, & Yancik, 2003). Nevertheless, few post-treatment clinical trails or epidemiol ogic studies have investigated the psychological and physical issues of older cance r survivors. Factors contributing to the burden of cancer in older populations include comorbi d health conditions, cognitive decline, perceived vulnerability of the elderly and polypharmacy use (Bellizzi, Mustian, Palesh, & Diefenbach, 2008). In a ddition, side effects resulting from cancer treatments are exacerbated by coexisting comorbid health conditions. Directions for future research in aged cancer popul ation include

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5 recruiting more older patents into clinical trails, character izing the mental, social, and physical health burden of older cancer survivors with different cancer s, identifying moderators/mediators of high health risks, measuring preand post-treatment f unction, disentangling cancer-related effects versus age related eff ects and examining health outcomes (Bellizzi et al., 2008; Avis & Deimling, 2008). Other areas where our knowledge of cancer survivorship is lacking is our understanding of the unique needs of ethnically and culturally diverse popula tions (subgroups such as low-income, or under-represented cancer site). The re is a need to examine some of the social-cultural and behavioral factors that may impact adjustment to the early stages of cancer survivorship. Additionally the impact of cancer on families and caregivers, the economic burden of a cancer diagnosis, and the challenges of returning to work after cancer treatment are important areas for future research (Aziz, 2007; Rowland, 2007).

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6 CHAPTER 2 REVIEW OF THE LITERATURE Health Risk Behaviors in Head and Neck Cancer Alcohol and Tobacco Use in Head and Neck Cancer Alcohol and tobacco use are significant risk factors for head and nec k cancer (HNC). A large-scale international study analyzed individual-leve l pooled data from 17 European and American case-control studies (11,221 cases and 16,168 controls) The results indicated that the population attributable risks for tobac co or alcohol was 72% for HNC, of which 4% was due to alcohol alone, 33% for tobacco alone, and 35% for tobacco and alcohol combined (Hashibe, et al., 2009). Higher risks w ere revealed for pharyngeal cancer (89%) and laryngeal cancer (72%). M en are at higher risk than women (74% versus 57%) and the elderly are at increased risk than younger people (73% for cases >60 years versus 33% for cases <45 years). Approximately, 30,100 new cases of HNC are diagnosed as oral and pharyngeal cancers, accounting for 3% of all cancers in the Unite d States, with 7,800 dying from the disease each year. Most of these cancers are diagnosed as late-stage. (Silverman Jr, 2001). Despite advances in surgery and radiation, the five-year surviv al rate remains at about 50% (58% for whites and 34% for African-Ame ricans). Only

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7 risks for nasopharynx, oropharynx and hypopharynx cancer showed significant improvement in five-year survival rates (Carvalho, Nishimoto, Cali fano, & Kowalski, 2005). It is estimated that 75% of HNC are associated with the use o f tobacco product, excessive alcohol consumption, and in many cases, the combination of the two (Mashberg, Boffetta, Winkelman, & Garfinkel, 1993). The risk of head a nd neck squamous cell carcinomas (HNSCC), the majority of HNC, is 10fold for cigarette smokers as compared to life time non-smokers. About 89-90% of HNSCC is attributed to tobacco use and alcohol abuse (Sturgis & Cinciripini, 2007). Strong trends in risks related to alcohol consumption were observed for cancers of the oral cavity and pharynx, oesophagus and larynx (Bagnardi, Blang iardo, La Vecchia, & Corrao, 2001). Tobacco smoking was more strongly correla ted with soft-palate lesions than with lesions in more anterior sites. Pat ients with cancer of the floor of the mouth and oral tongue had higher odds for alcohol drinking (Bof fetta, Mashberg, Winkelmann, & Garfinkel, 1992). In a meta-analysis exami ning the effect of alcohol drinking on the risk of developing cancer, Bagnardi et al. ( 2001) found that in the non-smoker population, the odds are three-fold higher in drinkers than non-drinkers. Continued use of alcohol and tobacco are common in HNC survivors. Leon, et al (2002) reported that 13% of patients continued smoking and 21% continued

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8 drinking alcohol after treatment (X. Leon, et al. 2002). Miller et a l. (2006) indicated that about 34-57% of patients continue to consume alcohol after diagnosis of upper aerodigestive tract cancer. However, the reported number may underes timate the real percentage since most data are based solely on self-report. A s tudy, combining objective measurements (serum cotinine and end-expired carbon monoxide) and interview data, revealed that up to 50% of self-reported non-smokers were actively smoking (Hald, Overgaard, & Grau, 2003). Persistent use of alcohol and tobacco increases the likelihood of de veloping a second metachronous neoplasm. A study examined 514 HNSCC and found that the odds ratio of a second neoplasm was 2.9 for patients who continued to smoke a nd 5.2 for patients who continued to use alcohol (X. Leon, et al., 2009). Based on the attributable risk estimation, the authors concluded that persistent al cohol and tobacco consumption could be responsible for one third of second neoplasms in HNSCC patients. Similar research evaluated the joint effects of continuous tobacco smoking and alcohol consumption on the risk of a second primary cancer in 1181 pati ents with early stage HNSCC (Do, Johnson, Doherty, Lee, & Xi, 2003). The result indicated t he development of a second primary tumor is associated with continued sm oking and alcohol consumption, older age, stage II diagnosis and index diagnosis of phar yngeal cancer.

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9 Alcohol and Tobacco Use as a Coping Mechanism Among patients with various cancers, specific types of coping be haviors are associated with distress, health-related quality of life (HRQ OL), and survival (Faller & Bulzebruck, 2002; Hagedoorn, Sanderman, Bolks, Tuinstra, & Coyne, 2008; Pieterse, et al., 2007). Sherman et al. (2000) examined coping patterns a mong HNC patients at the following four phases of illness: 1) pretreatment, 2) during treatment, 3) less than six months after treatment and 4) more than six months after treatment (Sherman, Simonton, Adams, Vural, & Hanna, 2000). The results indicated that patients in different phases of treatment used distinct coping stra tegies. For example, patients who were receiving treatment or were within six mon ths of completing treatment had higher levels of illness-related distress. They tended to use more emotion-focused coping strategies such as denial, behavioral disenga gement, suppression of competing activities and emotional ventilation. Patients who were more than six months post-treatment continued to experience distress but tended to use different coping strategies such as religion, acceptance and acti ve coping. Continued use of alcohol and tobacco may serve as one of the dominant coping responses for HNCS who are experiencing high levels of distress and do not have a large repertoire of adaptive coping responses. Nevertheless, rese arch in this area has not yet determined a conclusive connection between distress and incr eased or

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10 continued alcohol and tobacco use in HNCS. Humphris et al. (2004) tested the relationship between psychological distress and continuing versus ref raining from smoking. The results revealed that 15 months after initial cancer treatment, 27% (20 out of 73) of the patients with oral or oropharyngeal cancer continued to smoke, 51% abstained, and 10% returned to smoking (Humphris & Rogers, 2004). Consistent smokers had higher distress levels than abstainers. The level of ci garette consumption at baseline was a significant predictor of psychological distre ss at 15 months in those who continued to smoke. Aarstad et al. (2007) also found that patients with HNSCC reported after one year of treatment that they utilized drinking a s a coping mechanism, the degree of smoking and alcohol consumption increased while general quality of life (QoL) decreased (Aarstad, Aarstad, & Olofsson, 2007). In contrast, other research has reported a positive association between continued alcohol use and health outcome. Vartanian (2006) found that continued alcohol consumption was positively associated with less work-rela ted disabilities in 301 patients who had squamous cell carcinoma of the upper aerodignesti ve tract and were disease free for at least 2 years (Vartanian, Car valho, Toyota, Kowalski, & Kowalski, 2006). In addition, Allison (2002) found that in 191 HNCS, 80% of whom had finished treatment, alcohol consumption was associated with bett er functional and physical scores and lower levels of symptoms such as fat igue and pain as compared to the patients who reported they had not drink alcohol during the last

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11 month (Allison, 2002). Although positive associations between alcohol consumpti on and physical function cannot confirm a causal relationship, the author r aises the question of “whether moderate alcohol drinking is promoting recovery or re sulting from it.” Overall, alcohol and tobacco use are regarded as significant risk f actors in the development of HNC. Despite the known risks, a high proportion of HNC s urvivors persistently use alcohol and tobacco after cancer treatments. Alt hough continued use of alcohol and tobacco increase the likelihood of developing second cancers, these behaviors may represent important coping mechanisms for those dealing with post-treatment distress. One of the factors that is lacking in m uch of the research assessing alcohol use is the distinction between problematic alcohol consumption versus moderate alcohol consumption. Quality of Life, Psychological Distress and Treatment-Related Side Effects. Factors Affecting Quality of Life in HNC Survivors In the last decade, quality of life (QoL) has become an importa nt outcome measure for cancer survivors since it measures physical, social and emotional factors that may be impacted by cancer treatment. Rogers et al. (2007 ) reviewed 165 QoL studies in HNC published between 2000 to 2005 and indicated that the dramati c

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12 increase in the number of HRQOL research reflects the importanc e of the patientsÂ’ perspective as an outcome parameter (Rogers, Ahad, & Murphy, 20 07). The studies were analyzed and categorized into five themes: predictors of HRQOL (59 studies), functional outcome (50), questionnaire development/validation (11), randomized controlled (11), and review/editorial (11). The study illustrate d an overall picture of QoL research within the realm of HNC. Understudied areas incl uded lack of information regarding: direct comparisons of HRQOL with various tre atment modalities; toxicity complications, patientsÂ’ perception of trea tment burden; and the outcome of salvage treatment. It is clear that intervention st udies and randomized trails assessing HRQOL as a primary outcome are in their i nfancy. It is also notable that among 165 studies, only two examined the association between conti nued substance use (alcohol and tobacco) and HRQOL. Psychological Distress in HNC Survivors Depression is present in HNC patients throughout the course of the ca ncer trajectory. Compared to other cancer sites, HNC patients have one of the highest levels of depression (Zabora et al., 2001). Estimates of depression rates in HN CS vary according to where the patient is in the course of their treatment and the criter ion used to define depression. Research has shown depression rates as hig h as 40% at the time of diagnosis, up to 52% during treatment, and as high as 45% six month

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13 post-treatment. The levels of depression tended to decrease over t ime although it has been shown that as many as 27% of HNCS may experience depre ssion (Haisfield-Wolfe, McGuire, Soeken, Geiger-Brown, & De Forge, 2009; Ka tz, Kopek, Waldron, Devins, & Tomlinson, 2004; Kugaya, et al., 2000). In a three-year longitudinal study, 197 HNCS were followed up before treatment to thre e years after treatments (de Leeuw, et al., 2001). Depressive symptoms decreased gradually from pretreatment (28%) to 6 months (24%) and to 3 years (20%) after tre atment, indicating that emotional functioning gradually improved with time a lthough a substantial number of survivors continued to experience distress many y ears after their initial cancer diagnosis. There are a number of individual characteristics that are positi vely correlated with depression such as younger age, being unmarried, living alone, l ess social support, lower education level, higher cancer stage, unemployment, mor e financial stressors, and the number of reported treatment side-effects (Pande y, Devi, Ramdas, Krishnan, & Kumar, 2009). It has been hypothesized that depression in HNCS may be under-diagnos ed and confounded with treatment-related symptoms such as decreased appe tite, problems with sleep, high levels of pain and fatigue, cognitive impairments and weight loss. Additionally, nicotine withdrawal and alcohol-related mood disorders m ay contribute to increased distress (Duffy, et al., 2007; Lydiatt, Moran, & Burke 2009). Depression

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14 was also found to be associated with anxiety in HNC patient (Pande y, et al., 2007). Pre-treatment depressive symptoms were found to be the best pre dictor of post-treatment depression (Karnell, Funk, Christensen, Rosenthal, & Ma gnuson, 2006). It has been suggested that pre-treatment screening for distr ess in HNC patients may be useful for determining which patients have the greatest need for psychosocial intervention. Early detection of high risk depression can facilitat e appropriate monitoring and timely intervention in cancer survivorship care. Psychological problems of HNC patients are frequently comorbided w ith alcohol and tobacco use, which may lead to poor treatment compliance and complicate post-treatment rehabilitation. Duffy et al. (2007) surve yed 973 HNC patients and reported that 46% of them were screened positive for depre ssive symptoms, 30% smoking, and 16% problem drinking. Smoking and alcohol consumption were positively associated with depressive symptoms. Other studies found that depressive symptoms and smoking had a strong negative as sociation with QoL scales, especially in predicting physical status and socia l well-being (Duffy, et al., 2007; Duffy, et al., 2002). One study reported that 64 % of pre-surgica l HNC patients (n=24) met the criteria of alcohol abuse and 62% alcohol depende nce during their life time. Additionally, 26.1% of the same population met cr iteria for major depressive disorder (McCaffrey, et al., 2007). Fear of recurrence was commonly reported by HNC survivors and found to be closely related to their psy chological

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15 distress (Humphris et al., 2003; Hodges, & Humphris, 2009). It is estima ted that one-third of cancer patients reported that they worry very much about recurrence (Gotay & Pagano, 2007). A recent study of 278 HNC patients with oral and oropharyngeal squamous cell carcinoma found that 18% of HNCS developed recurrent diseases within 2 years. Among 51 patients with recurr ence, 39% were aware of the conditions and 59% were in stage 3 or 4 (Kissun, et al ., 2006). Patients who believed in a greater likelihood of recurrence tended to be more vigi lant of physical symptoms and were more likely to engage in self-blam e behaviors (Scharloo, et al., 2005). They also developed stronger emotional responses to the il lness and reported lower QoL scores. Compared to other types of cancers, HNC patients often experience psychological issues that do not fit diagnostic criteria but lead to high levels of distress (Haman, 2008). These issues include neurocognitive dysfunct ion due to cancer treatments, disfigurement and other body image issues, physi cal dysfunction (such as impairment in voices or swallowing), high levels of pain, and sexual disfunction. For instance, a study of 66 HNC patients who recently ha d surgery reported that the severity of disfigurement was associated w ith poor self-image, relationship problems, sexual problems and increased social isolation (Gamba, et al., 1992). Overall, high levels of depressive symptoms, low performance status and

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16 combined chemotherapy and radiation treatments are significant predi ctors of low QoL and poor functioning after treatment (de Graeff, et al., 2000). The result of a large 10-year study of HNC patient indicated that after trea tment, patients with low QoL at 1 year had significantly increased odds of death (Meha nna & Morton, 2006). The psychosocial factors that were found to be associated with nega tive prognosis in long-term survival included low physical self-efficacy, less e motional expression, poor cognitive function, being single and alcoholism (Mehanna, De Boer, & Morton, 2008). Despite these findings, the association between psychosocial fac tors, QoL and survival is inconsistent and deserves further investigation. The high rates of distress observed in HNC survivors suggests the need for aggressive psychosocial screening and subsequent treatment of depres sion and anxiety (Duffy, et al., 2007). It is hypothesized that psychosocial interventions that decreasing depression, promote smoking cessation, and discourage problem atic drinking behavior will lead to improvements in overall QoL (Duffy, e t al., 2006). In addition, restructuring distorted illness perceptions (such as fear of recurrence or emotional reaction to the illness) may lead to better psychos ocial adjustment during and after treatment (Scharloo, et al., 2005). Treatment Side-Effects in HNC Survivors The increasing number of cancer survivors has led to greater focus on the

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17 short-term and long-term sequelae of cancer treatments on all or gan systems (Miller & Triano, 2008). Late or long-term side-effects have become an import ant index of QoL in cancer survivors. Tumor localization and disease stage det ermine the treatment approach, which in turn contributes to different side effe cts and significantly impacts physical, social, and cognitive functioning a s well as global QoL (Alicikus, et al., 2009). When tumors are localized, many pati ents can be cured by radiotherapy alone and thereby maintain full organ function (Zac krisson, Mercke, Strander, Wennerberg, & Cavallin-Stahl, 2003). Radiation exposure can a ffect large vessels, such as the internal carotid artery and can induce osteonec rosis of the jaw. Other radiation-related side-effects include pain, changes in mucous production, xerostormia, and dysphagia (Murphy & Gilbert, 2009). Langendijk, et al (2008) found that compared to xerostomia, swallowing problem result in a gre ater impact on HRQOL, particularly during the first 18 months after the completi on of radiotherapy. Chemotherapeutic agents and radiotherapy can also impact the abilit y to swallow which can lead to increased pain and malnutrition. Other chemotherap y side-effects include nausea, vomiting, nutropenia, general weakness and fatigue (Manika ntan, et al., 2009). Surgery can also lead to a number of long-term problems. Spinal a ccessory nerve can be compromised during neck dissection for head and neck carcinoma and for locally advanced larynx and oral cavity cancers, speech is di rectly affected

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18 postoperatively (Bjordal, et al., 2001). In addition, insufficient reconstr uction after wide surgical procedures can contribute to eating problems, difficult y opening the mouth and swallowing dysfunctions. It is commonly assumed that surge ry will cause greater insult to function and QoL than nonsurgical interventi on. El-Deiry (2005) compared QoL of HNC patients in stage III or IV who accept ed surgery and postoperative radiation therapy (SRT) or concurrent chemotherapy and radiation therapy (CRT) at least 12 months after treatment. The results indicate d that patients in the SRT group demonstrated worse speech outcomes than did patients i n the CRT group (El-Deiry, 2005). There were no significant differences within other domains of QoL such as eating, discomfort, pain, or altered social functi on. Nevertheless, patients in the CRT group had lower overall QoL scores and higher depr essive symptoms, which may be related to the unmet expectation of avoiding s urgery. El-Deiry concluded that QoL in these two groups was essentiall y the same and the selection of treatments should be tailored to the individual and the tumor site. Although physical and psychosocial aspects of QoL are often inte rrelated, they may change in opposite directions. A study comparing QoL in 316 HNSCC patients before initial treatment and 1 year after treatment reported a decline in physical QoL and an improvement in mental health QoL (Ronis, Duff y, Fowler, Khan, & Terrell, 2008). Major predictors of change in QoL from baseline to 1 year were treatment-related factors (especially feeding tube placem ent), chemotherapy, and

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19 radiation therapy. Smoking and depression were also significant f actors in predicting QoL one year post-treatment. A qualitative research study evaluating 18 HNC survivors who were interviewed about their problems in daily life indicated that physiologica l changes as well as activities of daily living and participation in life were reported as e qually important. It was also noted that when asked about their problems, patients rarely mentioned anatomical changes. This study emphasized the importance of psyc hological and social factors in the recovery from HNC (Tschiesner, et al., 2009). Similarly, Holloway et al (2005) assessed the relationship betwe en physiological and psychological factors and QoL in a cohort of 5-year HNC survi vors. They reported that psychosocial variables were even more important than ph ysiological variables in predicting QoL for long-term HNC survivors, particul arly the factor of premorbid pessimism. Those with less developed coping mechanisms had more difficulty managing chronic side effects and reported lower Q OL (Holloway, et al., 2005). Despite the fact that many cancer treatments are able to add years to life to those who previously had little hope of survival, it is equally importa nt recognize the importance of QoL within the spectrum of survivrship (Miller & Triano, 2008). A recent report from the Institute of Medicine (IOM) emphasized the importance of caring for the “whole patient” (Adler, 2008). Holland et al. (2008) furt her emphasized

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20 that cancer survivors should have a treatment plan, which includes at tention to potential psychosocial morbidity. The transition from active treatm ent to post-treatment care is critical to survivorsÂ’ long-term healt h. If survivorsÂ’ psycho-social problems can be identified early, they can be treate d timely by a range of evidence-based intervention (Holland & Weiss, 2008). Health Locus of Control in Cancer Patients Health Locus of Control: Definition and Concept Development Locus of control was originally conceptualized by Rotter (1966) as a general expectancy for control of reinforcement. Individuals with high internal locus of control believe that they can control the events that affect them Conversely, individuals with high external locus of control believe that events res ult primarily from external circumstances such as others, chance or fate (Rott er, 1966). The Internal-External Scale was developed to measure locus of control as a unidimensional construct and classify individuals as primarily having an internal or external locus of control. Based on RotterÂ’s Internal-External construct, Wallston et al. ( 1976) developed the Health Locus of Control (HLC) scale to predict health -related behaviors (Wallston, Maides, & Wallston, 1976). However, Wallston et al. ( 1978)

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21 found that empirical data did not support the one dimension of locus of control which led to the development of the multidimensional health locus control (MHLC ) scale. It contains three independent dimensions in locus of control (Wallston, Wallston, & Devellis, 1978). An “internal” locus of control indicates that people b elieve they are responsible for their health. “External-chance” locus of control impli es that people feel that their health depends on luck or chance. “External-powerful othe r” locus of control is the belief that others, such as health professionals, are responsible for one’s health. Wallston and colleagues asserted that assessing mor e than one dimension of HLC would lead to an increased understanding of health behaviors. Health Locus of Control and Health/Risk Behaviors The concept of HLC has been widely adopted in research examining health/risk behaviors in various kinds of illnesses. Evidence suggests that an individual’s commitment to self-caring behaviors corresponds to the strength of their internal HLC. Once patients believe in their ability to control their he alth, they tend to make decision which is related to better manage their illness. For example, a recent study reported that patients with low back pain who visited compleme ntary and alternative medicine practioners had a higher Internal HLC sc ore compared to those who visited western medicine after controlling for other variables (Ono, et al., 2008). Patients with internal HLC tend to believe that they have the abi lity to control

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22 their health. Cross et al. (2006) examined the relationship between se lf-efficacy, HLC, health status and medical expenditure among rheumatoid arthritis (R A) and osteoarthritis patients (OA). The result revealed that OA patie nts with higher external HLC reported worse pain and function, more visits to general practi tioners and higher medical expenditures (Cross, March, Lapsley, Byrne, & Brooks, 2006). Thes e studies suggested that when individuals perceive that they have control over their health outcomes, they will take actions to prevent health problems. Research has shown that HLC can influence how one perceives thei r medical condition. One study examined 302 HIV-infected patients’ self-reports of HLC and HRQOL (Preau, et al., 2005). The results found that those reporting a high number of “internal” HLC beliefs at the initiation of treatment had be tter physical HRQOL in the 44th month after treatment, while “external-chance” HLC bel iefs were associated with lower scores in HRQOL. It was suggested that patients’ beli efs in HLC should be taken into consideration when developing intervention to improve patient s’ coping strategies. Haynes (1991) compared drug “misusers” who attended a community drug project and drug nonusers in their HLC scores. After controlling possi ble confounding variables such as age or education, the result indicated t hat active substance misusers were more likely to have comparably higher “e xternal” HLC scores than non-misusers (Haynes & Ayliffe, 1991). Similarly, indivi duals with

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23 adverse health behavior, such as smoking and excess drinking, tended t o have a higher “external” HLC (Barth & Harter, 1996; Kuwahara, et al., 2004). The influence of HLC on patients’ health or risk behaviors can be complex. For instance, Andrykowski (1994) included contextual factors (disease se verity and history of treatment failure) as mediators when investigating how HLC affected psychological distress in cancer patients preparing for bone ma rrow transplants. The result indicated that patients with high “powerful other” HLC bel iefs and a history of treatment failure reported greater distress, while patients with a high “internal” HLC and a history of treatment failure reported less distress (A ndrykowski & Brady, 1994). In HNC survivors, some examples of positive health behaviors include prompt medical care seeking and smoking and drinking cessation after diagnos is. Tromp et al (2005) investigated health behavior and HLC among 264 recently diagnosed HNC patients and found that patients who delayed seeking medical care repo rted higher levels of “external” HLC and lower levels of perceived health com petence (Tromp, et al., 2005). Patients who stopped drinking alcohol after their initial can cer diagnosis had higher scores on “internal” HLC, which was found to be the most impor tant predictor of continued alcohol use (Brouha, Tromp, Hordijk, Winnubst, & De Leeuw, 2005).

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24 Health Locus of Control and Physical and Emotional Distress. Past research suggests that locus of control plays an important role in the mind-body link and that if may influence the regulation of physical and emotional distress (Cross, et al., 2006; Graffeo & Silvestri, 2006). Individuals e xperience fewer negative emotions to stressful situations when they perceive thems elves as having sufficient control over the situation. Bruke (2008) hypothesized that psychological factors such as anxiety, hopelessness and locus of control may impa ct immune responses that contribute to the acceptance or rejection of a transpl anted kidney. He investigated the association between various psychological factors and the outcome of kidney transplant. The results indicated that the group that did not re ject the transplanted kidney reported more “internal” HLC beliefs while t he group that rejected the kidney reported more “external” HLC beliefs (Burke, 2008). Two recent studies tested a mediation model related to HLC and psychological outcomes. One study investigating the relationships be tween HLC and breast cancer perceived risk found that only “internal” HLC belie fs were significantly related to the perceived likelihood of remaining free of breast cancer (Rowe, Montgomery, Duberstein, & Bovbjerg, 2005). Moreover, “internal HLC belief s were mediated by an individuals belief they can control the development of breast cancer. In other words, women who believe that they could control their own health and their

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25 risk of breast cancer through their behaviors were more likely to report a lower perception of breast cancer risk. The other study examined the effects of scripts for masculinity (self-reliance and emotional control) on the relationship between “powerful-other” HLC beliefs and mental health in 230 male patients treated for prostate cancer (Burns & Mahalik, 2006). The results showed that patients with “powerful other” HLC bel iefs and less adherence to masculine scripts experienced positive mental health while patients who endorsed masculine gender script and believed others were influentia l to their cancer reported poor mental health. Although a great deal of research has suggested Internal HLC is associated with positive health outcomes and psychological well-being, other st udies have noted that when one is faced with a condition that is beyond human control, “inte rnal” HLC beliefs might lead to more distress. For example, a high “inter nal” HLC, advanced education, high self-esteem and the ability to perform daily funct ioning of living predicted positive affect in medical inpatients and recently diagnos ed cancer patients (Knappe & Pinquart, 2009). However, “internal” HLC only contributed to posit ive affect in cancer patients when they were in sufficient physic al condition to exert control over their health. There have been a few studies that have examined the association be tween HLOC and physical and emotional variables in HNC patients. Age w as reported to

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26 be a factor that influences locus of control in HNC survivors. Younger HNC patients, between 45 to 60 years of age, were found to use more active coping strategies and perceived more “internal” control over the course of their disease (Derks, de Leeuw, Hordijk, & Winnubst, 2005). In contrast, older patients, those more than 70 ye ars of age, tended to utilize religious coping more frequently, indicating that they believed a spiritual power had some influence over one’s health. In spite of the di fferences in coping and the types of locus of control, this study found that there wa s no difference in QoL and depressive symptoms between the two age groups. The relationships between HLC and other demographic variables have als o been explored. Bettencourt (2008) found that for rural breast cancer pat ients, “powerful other” HLC beliefs were reliably associated with lower levels of depression. By contract, this association was reversed for women li ving in more urban areas. Moreover, “chance” HLC were found to be negative asso ciated with life satisfaction in women living in urban area and “internal” HLC predi cted lower levels of depression among breast cancer patients regardless of whether t hey lived in rural or urban settings (Bettencourt, Talley, Molix, Schlegel, & Westgat e, 2008). Additionally, lower education was significantly related to an “ex ternal” HLC (Cohen & Azaiza, 2007) and social support was reported to be positively associ ated with an “internal” HLC and negatively associated with an “external” HL C (Chen, Deng, & Chang, 2001).

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27 Summary Based on the literature review, there have been a number of studies examining substance use in HNC population. Most of these studies have focused on the relationship between substance use and treatment outcome, survival, qua lity of life, coping patterns, and depression. Many studies have investigated QoL in HNC pat ients, emphasizing the impact of treatment side effects and psychologic al symptoms on perceived QoL. There have also been a few studies examining the association between continued substance use and QoL. Many studies have found that s ubstance use is associated with depression and both of them are related to lower QoL. Only two studies found that moderated alcohol use is positively associate d with better physical function and suggested that moderate alcohol use might be a n index of recovery. Most studies indicated the importance of early detecti on of depression and substance use. With early treatment of these risk factors, the i mprovement of QoL in survivorship is expected. Internal HLC were found to be positively correlated with health be haviors in patients with various kinds of physical illness, such as patients wi th HIV, low back pain, arthritis or cancer. Most of the studies suggested that when indi viduals perceive they have control over their health, they tend to take action to preve nt health problems. In contrast, individuals with external HLC are inclined to d evelop risk

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28 behaviors such as substance use. Other studies indicated that perceivi ng enough control contributes to better psychological well-being. Neverthe less, contextual factors as well as other possible mediators should be taken into cons ideration when evaluating different kinds of HLC. Few studies have investigated the association between HLC and subs tance use, particularly in HNC survivors. In addition, the relationship between demog raphic variables and substance use behaviors in HNC survivors is not very cle ar. The present study intends to investigate the relationships between QoL, HLC and continued substance use (alcohol and tobacco use) in HNC survivors. We ar e particularly interested in how HLC may mediate the relationship between of QoL and health risk behaviors.

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29 CHAPTER 3 METHOD Participants and Procedure This study was based on an on-going survey research project th at involves longitudinal assessment of HNC survivors who recently completed cance r treatment. Participants were recruited from three cancer centers (Unive rsity of Colorado Comprehensive Cancer Center, St. MaryÂ’s cancer Center in Pueblo, Co lorado, and St. JosephÂ’s Cancer Center in Denver, Colorado). In this study, forty-six HNC survivors completed the post-treatment three-month follow-up survey. Inclusion criteria included age 18 to 99, a recent diagnosis of HNC, initial treatment that included radiotherapy, and being conversant in reading English. Potential participants were contacted by a clinic staff mem ber prior to their 3-month follow-up visit. If HNC survivors were interested and met cr iteria, informed consent was obtained and the participant completed the self-r eport survey in a private location within the medical clinic. Please see Appendix A for a sample of the survey instrument.

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30 Domains Included in the Survey Instrument Demographics Demographic data included gender, age, marriage and relationship status, household income, education level, and ethnicity. High Risk Health Behaviors (Continued Alcohol and Tobacco Use) The amount and frequency of current and past alcohol and tobacco use were assessed. Quality of Life (Emotional and Physical Well-Being) Emotion well-being was measured via a list of psychosocial conce rns found to be important to HNC survivors. The degree of concern was assessed with a 5-point Likert scale ranging from “Not at All“, “A Little”, “Som ewhat”, “Quite a bit” and “Very Much”. Participants were asked to rate a number of emoti onal concern including anxiety, depression, anger, fear of recurrence, adjusting t o a new sense of uncertainty and the extent to which they were bothered by their appe arance. Physical well-being was measured via a list of 16 potential treatment side-effects or symptoms such as pain, fatigue, and nausea.

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31 Health Locus of Control The Multidimensional Health Locus of Control Scale (MHLC) is an 18-item self-report questionnaire that measures dimensions of “internal”, “external” and “power other” HLC. The MHLC assesses an individuals’ belief t hat their general health is or is not determined by their own behaviors. A 6-point Likert scal e ranging from 1 (strongly disagree) to 6 (strongly agree) is used to re cord responses on the MHLC. Each dimension of HLC has 6 items. The Cronbach for each dimension is as follows: internal HLC, = .67; external HLC, = .60; and Powerful Other HLC, = .61 (Wallston, et al., 1978). Purposes and Hypotheses Aim 1: Identify the relationships between continued substance use and de mographic (age, education, Socio-economic status) and medical variable (cancer stage) Hypothesis 1.1: Older HNC survivors are more likely to continue to us e alcohol and tobacco three months post-treatment. Hypothesis 1.2: HNC survivors with higher education levels are less likely to continue to use alcohol and tobacco three months post-treatment. Hypothesis 1.3: HNC survivors with lower socio-economic status are m ore likely to continue to use alcohol and tobacco three months

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32 post-treatment. Hypothesis 1.4: HNC survivors with early stage cancer are mor e likely to continue to use alcohol and tobacco three months post-treatment. Aim 2: Examine the relationship between QoL (emotional and physica l well-being) and continued use of alcohol and tobacco. Hypothesis 2.1: Continued use of alcohol and tobacco will be negative associated with physical well-being (QoL) three months post-treatment. Hypothesis 2.2: Continued use of alcohol and tobacco will be negative associated with emotional well-being (QoL) three months post-treatment. Aim 3: Examine the association between HLC, QoL and continued alcohol and/or tobacco use and test the mediation model with HLC (Figure One). Hypothesis 3.1: An “internal” HLC is positively associated with hi gher QoL scores three months post-treatment. Hypothesis 3.2: An “internal” HLC is negatively associated with c ontinued use of alcohol or tobacco three months post-treatment.

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33 Data Analyses To examine the relationship between continued substance use and demographi c, point-biserial correlation coefficient was utilized. Age, educ ation levels, socio-economic status and stages of cancer were regarded as cont inuous variables while use/not use of alcohol/tobacco was a dichotomous variable with no underlying continuum. Similiarly, to fulfill Aim Two, point-biserial correlation coeff icient analysis was adopted to examine the relationships between physical/emotional well-being and use/not use of alcohol/tobacco. Physical and psychological well-be ing was represented in either the total numbers of concerns the participants endorsed or the severity of their concern. To fultill Aim Three, Pearson’s correlation coefficient was ut ilized to examine the relationship between QoL (Phsyical and Psychological Well-be ing) and “internal” HLC. To test hypothesis 3.2, point-biserial correlation coefficient was used to examine the relationship between “internal” HLC and continued use or not use of alcohol/tobacco.

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34 CHAPTER 4 RESULTS Table 1 displays the participantsÂ’ demographic data. The majorit y of the participants were middle-age white males. Their age ranged from 33 to 89 years old with a mean age of 57.5 years. Almost half of the participants were married and more than half of the sample had completed at least some coll ege. The range of annual income was $25,001 to $50,000. The cancer stage ranged from Stage I to Stage IV. In terms of risk behaviors, among the 46 participants, 37% (n=17) continued to use alcohol and 17.4 % (n=8) continued to use tobacco following the ir cancer treatment. Table 1: Demographic data N Percentage Gender Male 40 87.0 Female 6 13.0 Age <40 2 4.3 41-50 6 13.0 51-60 19 41.3 61-70 13 28.3 >70 1 2.2 Missing 5 10.9 Relationship Status Married 22 47.8 Divorced 16 34.8 Separated 2 4.3

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35 Table 1 (ConÂ’t.): Demographic data N Percentage Never Married 5 10.9 Missing 1 2.2 Education No school 1 2.2 Grades 1-8 1 2.2 Grades 9-11 1 2.2 High School 12 26.1 College 1-3 years 15 32.6 College graduate 9 19.6 Graduate degree 7 15.2 Annual Income 0-$10,000 5 10.9 $10,001-25,000 13 28.3 $25,001-50,000 7 15.2 $50,001-75,000 11 23.9 $75,001-100,000 2 4.3 >$100,000 8 17.4 Ethnicity White 37 80.4 Hispanic 5 10.9 Black 1 2.2 Asian 1 2.2 American Indian 1 2.2 Missing 1 2.2 Stage I 8 17.4 II 7 15.2 III 5 10.9 IV 14 30.4 Missing 12 26.1 Note. Missing indicates that the participants did n ot report their data in the specific variable

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36 Table 2 indicates the numbers and percentage in demographic and me dical variables in continued use or not use alcohol and tobacco. In Table 3, point –biserial correlation coefficient shows that continued use of tobacco was negatively associated HNC survivors’ annual income, indicating that participants with lowe r annual income were more inclined to use tobacco at three months post-treatment ( r=-.25, p<.05) while continued use of alcohol or tobacco was not significantly associa ted with HNC survivors’ age, education and cancer stage. Table 2: Demographic and medical variables vs continued use/not use alcohol/toba cco Alcohol Tobacco Total Use Not Use Missing Use Not Use Missing Variables N N (%) N (%) N (%) N (%) N (%) N (%) Total 46 17(37.0) 27(58.7) 2(4.3) 8(17.4) 37(80.4) 1(2.2) Gender Male 40 15(37.5) 23(57.5) 2(5.0) 6(15.0) 33(82.5) 1(2.5) Female 6 2(33.3) 4(66.7) 0(0) 2(33.3) 4(66.7) 0(0) Age <40 2 0(0) 2(100) 0(0) 0(0) 2(100) 0(0) 40-60 25 11(44.0) 13(52.2) 1(4.0) 5(20.0) 19(76.0) 1(4.0) >60 14 4(28.6) 10(71.4) 0(0) 3(21.4) 11(78.6) 0(0) Missing 5 2(40.0) 2(40.0) 1(20.0) 0(0) 5(100) 0(0) Education
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37 Table 2 (Con’t.): Demographic and medical variables vs continued use/ not use alcohol/tobacco Alcohol Tobacco Total Use Not Use Missing Use Not Use Missing Variables N N (%) N (%) N (%) N (%) N (%) N (%) Income <25,000 18 5 (27.8) 13(72.2) 0(0) 5(27.8) 12(66.7) 1(5.6) 25,000—50,000 18 6 (33.3) 10(55.6) 2(11.1) 1(5.6) 17(94.4) 0(0) >50,000 10 6(60.0) 4(40.0) 0(0) 2(20.0) 8(80.0) 0(0) Stage I 8 4(50.0) 4(50.0) 0(0) 1(12.5) 7(87.5) 0(0) II 7 4(57.1) 2(28.6) 1(14.3) 2(28.6) 5(71.4) 0(0) III 5 2(40.0) 3(60.0) 0(0) 0(0) 5(100) 0(0) IV 14 3(21.4) 11(78.6) 0(0) 2(14.3) 11(78.6) 1(7.1) Missing 12 4(33.3) 7(58.3) 1(8.3) 3(25.0) 9(75.0) 0 Note. Missing in Alcohol or Tobacco indicates that participants did not report whether they continued to use Alcohol/Tobacco or not. Missing in Age indic ates that five participants did not report their ag e and missing in Stage indicates 12 participants did not report their cancer stage. In terms of physical side-effects, survivors who reported higher s everity scores were more likely to use alcohol three months post-treatment (r=.26, p<.05) while survivors who endorsed a greater numbers of physical side effects ( r=-.28 p<.05) and those who reported a greater numbers of emotional concerns (r=-.29 p< .05) were less likely to use tobacco three month post-treatment (Table 4). In Table 5, the Pearson correlation coefficient indicates that all of the assessed aspects of quality of life (the number and the severity of physic al site effect and

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38 emotional concern) were negatively associated with Internal-Hea lth Locus of Control (Internal-HOLC) (r=-.37, -.39, -.39 and -.27, all p <.05). Interestingly, as seen in Table 6, survivors who obtained higher scores in the area of InternalHLOC were more likely to continue using tobacco (r=.27, p<.05). Table 3: Demographic and medical variables vs continued use/ not use alcohol/tobacco Point-Biserial Correlation Coefficient Drink_not Drink Smoke_not Smoke Age .02 .02 Sig .44 .46 N 41 40 Education .08 -.10 Sig. .31 .25 N 46 45 Annual Income .09 -.25* Sig. .28 .05 N 46 45 Tumor Stage .12 .11 Sig. .22 .23 N 46 45 %QTTGNCVKQPKUUKIPKHKECPVCVVJGNGXGNn VCKNGF

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39 Table 4: Correlation: quality of life vs use/ not use alcohol/tobacco Point-Biserial Correlation Coefficient Drink_not Drink Smoke_not Smoke Physical Well-being .14 -.28* Total # of Side Effects Sig .17 .03 N 46 45 Physical Well-being .26* -.16 Severity of Side Effects Sig. .04 .15 N 46 45 Emotional Well-being .18 -.29* Total # of Emotional Concerns Sig. .12 .03 N 46 45 Emotional Well-being .13 -.15 Severity of Emotional Concerns Sig. .20 .17 N 46 45 %QTTGNCVKQPKUUKIPKHKECPVCVVJGNGXGNn VCKNGF Table 5: Internal-HLOC vs quality of life Pearson Correlation Coefficient Physical Well-being Total # of Side Effects Physical Well-being Severity of Side Effects Psychological Well-being Total # of Emotional Concern Psychological Well-being Severity Emotional Concern Internal-HLOC r -.37** -.39** -.39** -.27* Sig .008 .006 .005 .045 N 41 41 41 41 %QTTGNCVKQPKUUKIPKHKECPVCVVJGNGXGNnVC KNGF%QTTGNCVKQPKUCVVJGNGXGN

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40 Table 6: Internal-HLOC vs use/not use alcohol/tobacco Point-Biserial Correlation Coefficient Drink_not Drink Smoke_not Smoke Internal-HLOC r -.14 .27* Sig .204 .049 N 39 40 %QTTGNCVKQPKUUKIPKHKECPVCVVJGNGXGNn VCKNGF

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41 CHAPTER 5 DISCUSSION AND CONCLUSIONS The results of this study were mixed in terms of supporting our original hypothesis. Given that this study focused on the continued use of toba cco and alcohol in HNC survivors, it is important to note that the percentage of continued use of alcohol and tobacco in our head and neck survivors was within the range reported in the literature (Leon et al., 2002; Miller et al., 2008). Thus we feel that many of our findings can be compared to other studies that have examined these questions. Our first aim focused on the relationship between continued substance use and demographic variables. Annual income was the only demographic variabl e that was significantly related to maladaptive health behaviors. Less annua l income was associated with increased likelihood of continuing to use tobacco. Previous study found that people with lower education or income had higher score in External-H ealth Locus of Control (Cohen & Azaiza, 2007), which indicated that if people attribute their health result to the influence of external reason such as luck or chance, they tend to exhibit more risk behaviors. According to Wallston, et al. (1978), Internaland External-HLOC can be in two independent dimensions. Other study pointed out tha t people used Internaland External-HLOC alternatively depending on w hether the situation was controllable or not (Knappe & Pinquart, 2009). Although

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42 External-HOLC was not included in the present study, further analy sis in this study showed that education and income were negatively associated wit h External-HLOC (r=-.31 and r=-.47, p<.05), giving more explanation of the association betw een low income and continued use of tobacco. Our second aim involved the association between quality of life and cont inued use of alcohol/tobacco. Participants who reported more severity of s ide effects, suggesting lower quality of life, tended to use alcohol post-treatme nt. Interestingly, the opposite association was found with continued use of tobacco such that participants who reported more numbers of physical side effects and more emotional concerns were less likely to use tobacco. The results of the cur rent study reflected the mixed findings in previous studies. Aarstad et al. (2007) reported that survivors who reported more severe side effects tended to use alcohol as a way of coping. In contract, A llison (2002) reported that alcohol consumption was found to be associated with better physical function and lower level of symptoms in 191 HNC survivors who finished treatment w ithin four years, indicating that consuming alcohol in moderation post-cancer t reatment may be a marker of better recovery and quicker resumption of pre-treatm ent activities. Given that the use of alcohol may or may not represent problematic behaviors, future research in this area should seek to determine not only the amount of a lcohol consumed, but the context under which the alcohol is consumed. An improved

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43 understanding of how continued alcohol consumption may or may not represent maladaptive coping behaviors will increase our understanding of how a lcohol consumption is associated with post-treatment recovery and risk of re currence in head and neck cancer survivors. In terms of tobacco use, we found that survivors who had poor quality of li fe (more psychological concerns and more side effects) seemed to smoke less. Nevertheless, previous study showed that the level of smoking was a p redictor of psychological distress and associated with poorer quality of li fe in HNC survivors (Humphris & Rogers, 2004). One reason to explain the difference is t hat we only examined smoking behavior in the three-month post-treatment while the previous study recorded smoking behavior at 4 time points from three to fifte en-month after treatment. Survivors in our study were at the beginning phase of t heir survivorship. They might concern the negative influence of tobacco when they perce ived more side effects and psychological concerns. Based on our findings, continued use of alcohol and tobacco should be regarded as separate risk behaviors that may be associated wi th different recovery outcomes. Additionally, the factors that reinforce these behaviors may be quite different. It is likely that the use of alcohol and/or tobacco a s a means of coping with distress may lead to more problematic recovery following tr eatment. It is suggested that future studies assess not only the quantity of alcohol and tobacco

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44 consumption, but also examine coping behaviors, the survivors knowledge and understanding of the perceived risks, and the survivors' reasons for conti nuing or resuming the use of these substances. Our third aim was to examine the associations between health loc us of control, quality of life and continued use of tobacco and/or alcohol. The results of this study support the hypothesis that Internal-HLOC would be positively associa ted with Quality of Life. Consistent with previous studies (Preau, et al., 2005 ), HNC survivors with higher Internal-HLOC experience reported fewer a nd less severe physical and emotional symptoms. In terms of the relationship between HLOC and maladaptive health beh aviors, we found that HNC survivors with higher scores on the Internal-HLOC scale tended to continue to use tobacco. Internal-HLOC was not significantly a ssociated with continued use of alcohol. The association between Internal-HLOC and tobac co use is opposite of what we hypothesized, implying that survivor who thought t heir behaviors would influence their health outcome tended to use tobacco in th ree-month post-treatment. This result suggests that the relationship betwee n HLOC and health behaviors might be more complicated. Other factors such as survivor s' knowledge of the effect of tobacco, perception of recurrence and way of coping might affect survivors' decision of continued use tobacco. This study includes a number of limitations. The small sample si ze is an

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45 obvious limitation. Additionally, only those participants who were c oming in for their 3-month radiation oncology follow-up were asked to participate in the project such that we have no information about those survivors who did not return to the clinic for their 3 month follow-up. Lastly, we have no information r egarding the number and the characteristics of the HNC survivors who were approache d but chose not to participate in this study. These issues limit our abilit y to generalize these findings to other head and neck cancer populations. This study suggests a number of future directions for research i n this area. Although our findings are intriguing, they are cross-sectional and t ell us nothing about the longitudinal aspects of post-treatment recovery and continued s ubstance use in this population. We know that many of the side-effects of HNC treatment can continue for weeks and months following the cessation of treatment. Ot her studies of HNC survivors (Corry, 2009; Lango et al, 2010) as well as discus sions with our colleagues in oncology suggest that a large majority of HNC sur vivors are still using feeding tubes 3 months post-treatment. Therefore, it is likely tha t many HNC survivors are unable to drink liquid three months post-treatment which sugg ests that the percent of HNC patients who resume alcohol consumption may continue to increase as their recovery of swallowing function improves. A long itudinal study examining the relationship between physical side effects, psyc hological factors, recovery of function and health behaviors will improve our understanding of

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46 post-treatment risk behaviors and adherence to medical recommendat ions in HNC survivors.

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47 APPENDIX A. QUESTIONNAIRS

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