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This is to certify that the
dissertation entitled
THE LONGITUDINAL EFFECTS OF CANCER TREATMENT
ON SEXUALITY IN INDIVIDUALS WITH LUNG CANCER

presented by

JUDITH ANN SHELL

has been accepted towards fulfillment
of the requirements for

PHD degreein MARRIAGE AND FAMILY
THERAPY

 

 

 

MT mi}. PA. d.

Major professor

Date April 12, 2002

 

MS U i: an Affirmatiw Action/Equal Opportunity Institution 0- 12771

 

 

LIBRARY
Michigan State
University

 

 

 

PLACE IN RETURN Box to remove this checkout from your record.
TO AVOID FINES return on or before date due.
MAY BE RECALLED with earlier due date if requested.

 

, T U DATE DUE DATE DUE
t 8 2004

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

6/01 c:/CIRC/DateDue.p65-p.1s

THE LONGITUDINAL EFFECTS OF CANCER TREATMENT ON SEXUALITY IN
INDIVIDUALS WITH LUNG CANCER

By

Judith Ann Shell

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY

Department of Family and Child Ecology

2002

 

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ABSTRACT
THE LON GITUDIN AL EFFECTS OF CANCER TREATMENT ON SEXUALITY IN
INDIVIDUALS WITH LUNG CANCER
By
Judith Ann Shell

All cancers have the potential to diminish sexual functioning. The purpose of this
study is to examine changes in sexual functioning, as perceived by people with lung
cancer, during treatment (chemotherapy only or chemotherapy and radiation therapy) for
their disease. The extent to which age, gender, social support, and mood status affects
sexual dysfunction is also identified.

The sexual functioning of lung cancer patients in two different treatment groups
was measured pre-treatment, at 2 months and 4 months into treatment. The study was
conducted primarily in an out patient cancer clinic in the south, in cities in close
proximity to the center, and over the intemet. Fifty-nine of 84 eligible patients
participated in this longitudinal survey study. Sexual functioning was measured by the
Derogatis Interview for Sexual Function, Self-Report, social support was measured by
the Social Provisions Scale, and mood status was measured by the Derogatis Affects
Balance Scale (DABS). The Bonferroni technique, based on Student’s t statistic was
used to analyze change in sexual function within the two treatment groups between three
points in time. Change over time was also analyzed for social support and mood status.
Results indicate that sexual function decreases after treatment, particularly between time
one and two of survey completion (mean decrease, 4.35 points); this was not significant

at any of the three time points at level or = 0.05 jointly. Between time one and two, there

is a significant decrease (P = .004) in mood status according to the DABS Affects

Balance Index (ABI). Change in mood status between time one and three (decrease) and
time two and three (slight increase) is not significant. Overall, there is no significant
change in the subject’s perception of social support over the four month period.
Independent samples I test was used to analyze change in sexual function between the
two treatment groups at three points in time and no significant change was realized.
Pearson chi-square indicates correlation between the administration of the two different
treatments and cancer type (small cell and non small cell lung cancer) (P = 0.001). Three
multiple linear regression models performed regression analysis between the DISF-SR
raw score and each predictor variable (i.e. treatment, age, gender, social support, & mood
status). Age was a statistically significant factor affecting sexual function at all three test
points (P = .000, P = .000, P = .030 respectively). Gender significantly affected sexual
function at the level or = 0.05 at time two only. Between test points one and two mood
status did have a significant relationship to the subjects’ sexual function at level or = 0.05.
This was not realized at test point three. Social support did not affect sexual function
significantly at any of the three test points, however social support was found to
significantly affect mood status at all three points at level a = 0.05.

Most of the patients in this study entered with a sexual function that was below
normal. These data suggest that although there was not a significant decrease in sexual
function, patients sexual function did worsen and a decrease was related to age, gender
(at time two), and mood status (at time three). Therapists, in all settings, alert to this fact
can address sexuality concerns at the beginning of treatment and normalize feelings of
inadequacy. Further research will enable therapists to provide specific age and gender-

related interventions to improve quality of life, increase well—being and reaffirm hope.

 

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DEDICATION
This dissertation is dedicated to my loving parents, Robert and Elvera Short (aka Speed
& Rose). It is also dedicated to my beautiful children, Kimberly and Larry, and my

daughter-in-law, Jennifer. Finally, it is dedicated to the love of my life, Conrad.

ACKNOWLEDGEMENTS

This dissertation could not have been done without the participation and support
of my fabulous patients. They gave of their time and efforts to make this information
available to all people who are managing their lives with lung cancer and those dedicated
to caring for them and their families. Without them, this publication could not be
possible.

I also wish to acknowledge my family and friends who have a great support to
me. With their love, good thoughts and prayers, I was able to be creative and productive.
I depended daily on God’s help and support, and He saw fit to sustain me.

My dissertation chair, Dr. Marsha Carolan, and my committee, Dr. Robert Boger,
Dr. Barbara Given, and Dr. Lillian Phenice have supported and mentored me along the
road to scholarship. All of the other professors in Human Ecology at Michigan State
University are also to be commended for their interest in and caring for their students.

There were many others who assisted me in my dissertation endeavor; medical
assistants, nurses and physicians took time out of their busy schedules to assist me in
finding subjects. They are, Maria Ball, Maria Contreras, Monica Smiley, RN, MSN,
Kimberly Kennedy, RN, MSN, Cynthia Crumpton, RN, MSN, Mickie DeMichael, LPN,
Dr. Arnold Miller, Dr. Jorge Otoya, Dr.Maria Flores, and my statistician consultant, Dr.
Ying Zhang. The Oncology Nursing Society, the American Cancer Society, Michigan
State University (i.e. Beatrice Paolucci Memorial Scholarship, Jean Davis Schlater
Dissertation Fellowship, and other unrestricted grants) all provided scholarships to ease

financial anxiety and allowed me to follow and realize my dream.

TABLE OF CONTENTS

LIST OF TABLES ............................................................................... viii

LIST OF FIGURES ................................................................................ ix

CHAPTER 1

INTRODUCTION .................................................................................. 1
Problem ...................................................................................... 8
Importance of Study ........................................................................ 9
Research Questions ....................................................................... 13
Hypotheses ............................................................................. 14
Theoretical/Conceptual Model .......................................................... 15
Conceptual and Operational Definitions ............................................... 22

CHAPTER 2

REVIEW OF LITERATURE .................................................................... 24
Sexuality and Cancer ..................................................................... 25
Physical Factors ........................................................................... 27
Body Image ................................................................................ 31
Psychosocial ............................................................................... 33

CHAPTER 3

METHODOLOGY ................................................................................ 39
Assumptions .............................................................................. 39
Research Design .......................................................................... 41
Data Collection Procedure ............................................................... 41
Protection of Human Subjects .......................................................... 43
Setting and Sample ....................................................................... 44
Instrumentation ........................................................................... 45
Data Analysis .............................................................................. 61

CHAPTER 4

RESULTS .......................................................................................... 62
Data Analysis .............................................................................. 64
Demographics ............................................................................. 64
Research Question 1 ..................................................................... 66
Research Questions 2 & 3 ................................................................ 72
Research Question 4 ...................................................................... 73
Research Question 5 ..................................................................... 74

CHAPTER 5

DISCUSSION AND IMPLICATIONS ......................................................... 77
Strengths and Limitations ............................................................... 84
Implications for Research ............................................................... 88
Conclusions ................................................................................ 90

vi

APPENDICES ..................................................................................... 92
APPENDIX A

Sociodemographic Scale ................................................................ 92
APPENDIX B

Informed Consent ......................................................................... 94
REFERENCES .................................................................................... 98

vii

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LIST OF TABLES

Table 1.
DABS Primary Affects Dimensions ............................................................ 56

Table 2.
DABS Global Indices ............................................................................. 57

Table 3.
Clinical Characteristics of Sample ............................................................... 63

Table 4.
Demographic Characteristics of Sample ........................................................ 65

Table 5.
Sexual Functioning as Measured on DISF Questionnaire: T Scores of 5 Domains
of Sexual Functioning in Lung Cancer Patients ............................................... 68

Table 6.
Statistical Measures for Affects Balance Index T-score ...................................... 69

Table 7.
Statistical Measures for Social Support Total Raw Score .................................... 69

Table 8.
Joint 95% Confidence Intervals of Paired Difference at Any Two Time
Points for DISF Raw Data Scores ................................................................ 69

Table 9.
Treatment/Cancer type Crosstabulation ......................................................... 70

Table 10.

Test for Difference of Sexual Function Between Two Treatment Groups
at Three Time Points .............................................................................. 70

Table 11.
Joint 95% Confidence Intervals of Paired Difference at Any Two Time
Points for Mood Status and Social Support .................................................... 72

Table 12.
Regression Analysis for Sexual Functioning ................................................... 74

Table 13.
Regression Analysis for Mood Status Using ABI T-score .................................. 76

viii

LIST OF FIGURES

Figure 1.
Theoretical Map .................................................................................... 17
Figure 2.
Conceptual Map .................................................................................... 21

ix

 

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CHAPTER ONE
Introduction

The diagnosis of a chronic illness like cancer can be a significant crisis in the
lives of individuals and families (Gilbar, 1994; Kaye & Gracely, 1993; Manne, 1998;
McDaniel, Hepworth, & Doherty, 1992). Crises can undermine the client’s self-esteem
and self-efficacy, and it is not unusual for them to lose skills they have already developed
for dealing with difficult situations. Generally, clients are unprepared for the physical
changes, alternating periods of stability and change, and the uncertainty of future
functioning. Due to multiple losses, chronic illness demands new ways of coping,
changes in client/family self-definitions, and various periods of adaptation (Kaye &
Gracely, 1993; McDaniel, et al., 1992; Rolland, 1994). As well, because families must
interact with a multitude of systems (e. g. health care, work related, spiritual, etc.), they
encounter many opportunities for conflicts about roles, belief systems, and expectations
for optimal attention to health care.

Of the many people faced with cancer each year, those who have a diagnosis of
lung cancer are among the most common. Over 169,500 new cases of lung cancer were
diagnosed in 2001 (down from 178,000 in 1998), and approximately 157,400 individuals
will die from the disease this year. Even though the one year survival rates have
increased from 32% in 1973 to 41% in 1993, and the five year survival rates are up from
12% in 1974-76 to 14% in 1989-96 (American Cancer Society, 1998, 2001), lung cancer
remains one of the most deadly forms of this disease. Although death often is the first
fear, the potential exists for other stressors (Ryan, 1996; Schain, 1985). The treatment for

lung cancer including possible surgery, chemotherapy and/or radiation therapy

 

 

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(whether surgery is possible or not), the possible spread of malignancy, psychosocial
issues, and emotional distress, and an uncertain prognosis are all factors that necessitate
life-style adjustments.

Even though the mirror may not reflect immediate outward alterations in physical
appearance with a diagnosis of lung cancer, the image presented can no longer be trusted;
the body has betrayed its keeper. It is alien. This crisis of cancer is intensified by its
invasive nature, society’s reaction to it, and by the effects treatment can cause in relation
to changes in body image even when no outward change in appearance may be obvious
or visible. Treatment with chemotherapy and/or radiation therapy can be devastating
particularly if the patient begins in a debilitated state. Changes in role function due to the
inability to continue working, or a deflated body image from an altered appearance and/or
fatigue can threaten the individual with a loss of feelings of femininity or masculinity, as
well as a loss in physical sexual functioning. Four decades ago, Masters and Johnson
(1966) stated that almost half of all couples who are physically and psychologically
“healthy” have had sexual problems at some time during their relationship. And, they
continue to educate the public about how health problems and chronic illness can impact
sexual relationships (Masters, Johnson & Kolodny, 1994). It is reasonable to assume,
then, that many individuals with cancer, and particularly those who must undergo
treatment, will have some type of sexual concerns given the added pressures of their
disease. These concerns, in turn, can affect the couple relationship.

Although surgery is presently being used more often for the treatment of lung
cancer, chemotherapy and radiation therapy remain the mainstay for this disease. Much

of the literature regarding sexual side effects from chemotherapy or radiation therapy

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relates primarily to the genital-urinary, colorectal, breast and hematological cancers or to
how the treatment affects the testicles and ovaries, as well as fertility issues (Monga,
1995; Shell, 2001; Shell, 2002). Chemotherapy can cause toxicities in both men and
women. Specifically, patients often feel increased weakness, fatigue, and intermittent
nausea and vomiting the first few days after a treatment (Auchincloss, 1991). Soon after
treatment begins, skin changes (dryness or acne) and defacement from hair loss occurs
which can destroy self-confidence and a sense of sexual inadequacy can ensue. As well,
a drop in the hemoglobin count (red blood cells) can cause shortness of breath and further
increase fatigue. Additional ramifications produce ovarian and testicular dysfunction that
usually returns to normal after treatment ends. However, women may experience
arnenorrhea (cessation of periods) or irregular menses, hot flashes, decreased libido and
vaginal atrophy, and men may undergo a decreased or absent sperm count and difficulty
with erection and ejaculation (Auchincloss, 1991; Shell, Bell, Dougherty, 1996; Shell,
2001). Collectively, these symptoms are not only troublesome, but can create a lack of
sexual desire and perhaps cause the patient to withdraw from any kind of intimacy,
affection or physical gratification.

Although radiation therapy does not cause many of the same type of systemic side
effects that chemotherapy does, it can cause a reaction in the skin, and the color darkens.
This can be embarrassing and create a self-consciousness attitude. Radiation can also
cause fatigue especially when used in conjunction with chemotherapy. While treatment
is in progress and after its completion, the sense of being feminine or masculine may be
hindered simply due to the fact that helpful drugs like narcotics and anti-nausea

medication along with the general feelings of fatigue may influence the sexual

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response cycle. However, these patients need to be made aware that other means of
sexual expression can provide satisfaction and pleasure through increased closeness, both
physically and emotionally.

As clients experience the various dilemmas which arise once a cancer diagnosis
has been made, social support is considered to be a crucial element in effective adaptation
during cancer treatment and beyond (Baron, Cutrona, Russell, I-Iicklin & Lubaroff, 1990;
Manne, 1998; Stam, Koopmans, & Mathieson, 1991)). Social support is also reported to
be predictive of lower patient distress (Northouse, Dorris, & Charron—Moore, 1995).
Cancer patients have identified the most helpful kind of support from family and friends
to be emotional and instrumental (tangible) (Dunkel-Schetter, 1984; Manne, 1998;
Neuling & Wienfield, 1988; Pistrang & Barker, 1995; Smith, Redman, Burns, & Sagert,
1985). Although family and friends do play a significant role, Primomo, Yates, & Woods
(1990) report that the greatest amount of emotional and perceptible support is received
from the spouse. Marital partners, as well as supportive friends and other persons may
even influence survival from the disease in a positive manner (Neale, Tilley, & Vernon,
1986; Waxler-Morrison, Hislop, Mears & Kan, 1991). Quinn, Fontana, and Reznikoff
(1986) reported on a sample of male lung cancer patients and their perception of spousal
support. This 3-month longitudinal study indicated that men who received more spousal
support at first assessment acknowledged less distress at second assessment.

Bolger, Foster, Vinokur & Ng (1996) report, however, that support has not always
been found to provide beneficial effects. Their 6-month longitudinal study examined

SUpport from significant others, and reported on levels of distress. Differences in support

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did not relate to changes in emotional distress; this suggests that support did not have a
beneficial effect.

As early as the 1970’s, studies relating the importance of social support to various
areas of physical and mental health are evident in the literature. Early researchers
proposed that individuals would adapt to stressful life experiences if they had sufficient
social support, and these researchers were able to show that supportive relationships did
help to manage their stressors (Cassel, 1976; Cobb, 1976, 1979). The model they used is
termed the bufifering hypothesis; it proposes that during times of stress, social support
provides a protective role by augmenting coping behaviors (Cobb, 1979). Cohen & Wills
(1985) claim that there is mixed support for the buffering hypothesis and its attempt to
link stress, social support, and health. However, Russell and Cutrona (1984) reported at
an American Psychological Association convention “research has consistently indicated
that individuals who have better interpersonal relationships are less prone to the
development of physical and mental illnesses.” (p. 2)

A second model used to measure the effects of social support is termed the direct
effects model. According to this model, social support has a positive effect on health and
well being whether or not stress is present (Russell & Cutrona, 1991).

Clearly, the person with lung cancer experiences considerable emotional distress,
which can include depressed mood; depressed mood is reported as common in lung
cancer patients (Hughes, 1985; Ryan, 1996; Sama, 1993). This distress can amplify the
perception of physical symptoms (dyspnea, fatigue, & pain), contribute to a decline in
activities of daily living, and increase suffering (Klemm, 1994). Several studies have

investigated the role, which psychological factors, both positive and negative, play during

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and after treatment for cancer (Ayers, Hoon, Franzoni, Jatheny, Cotanch, & Takayanagi,
1994; Derogatis, Abeloff & Melisaratos, 1979; Dobkin & Bradley, 1991; Ryan, 1996).
Dobkin and Bradley (1991) conclude that psychological factors play a role in sexual
functioning in the cancer population, and that negative emotional states may disrupt
sexual vigor and eagerness. Burbie and Polinsky (1992) report that, “failure to deal with
these emotional problems successfully may lead to interpersonal difficulties such as
impaired sexual functioning, social isolation and strained relationships” (p. 26). As well,
anxiety or depression along with a sense of lost personal control over a very basic bodily
function like breathing, may also be disturbing to the patient, and cause them to avoid
intimate contact. Yet, John Bancroft (2001) explains that negative mood may actually
“perpetuate” sexual interest and responsiveness. He claims that about 15-20% of the
subjects in their survey reported an increase in sexual interest when they were in a
negative mood; this phenomena is age- and gender-related, and Bancroft (2001) states
that, “young men are most likely to report this effect” (p. 1).

Even though there continues to be a high incidence of lung cancer in men and
women, few studies concerning the psychosocial impact of this disease on individuals,
couples, or families have been forthcoming (Dobkin & Bradley, 1991). Specifically,
there have been no studies with individuals or couples concerning the impact that
treatment for this disease has on their sexual function, and whether social support and/or
mood status may explain variation in the level of sexual functioning during the treatment
process and/or beyond. For many individuals with lung cancer, treatment is palliative
rather than curative; treatment provides a modest improvement in survival and may be

restricted to symptom relief. Consequently, a rapidly fatal course forces the patient

 

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and family to confront many fundamental changes in everyday life that requires
correspondingly rapid adjustment” (Bernard & Ganz, 1991, p. 216). Although treatment
for lung cancer can deplete energy and cause side effects, a high level of social support
and a positive mood state may impact on the individual’s ability to adjust, and to realize a
more healthy sense of femininity and masculinity. We must learn what their sexual
function needs are along the treatment trajectory so prompt intervention is rendered,
especially since their prognosis is not as good as with other cancer diagnoses. Once the
individuals’ capability to function sexually has been assessed and identified, continued
research with couples and families will be essential to define the extent and nature of the
supportive care services that therapists should provide to enhance care. Only then can
appropriate intervention be made available to and with the entire system.

As part of an inter-disciplinary team, marriage and family therapists can provide a
therapeutic environment for individuals/families by helping them realize and
acknowledge their strengths and resources when responding to the cancer crisis, and to
cultivate adequate levels of social support, especially if few family members are
available. They also can impact how the patient copes with the occurrence of emotional
turmoil and depressed mood, promote the individual’s/family’s ability to experience
effective communication in relation to illness and its meaning, further the ability to
accept unacceptable feelings, and maintain family integrity. This, in turn, will empower
individuals and families to respond with more skill and confidence to the cancer crisis

and experience a better quality of life.

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This study identifies factors that contribute to sexual dysfunction in the person
with lung cancer who is receiving treatment with chemotherapy alone or chemotherapy
and radiation therapy. Prevalence information related to sexual dysfunction is also
identified. Differences are examined in sexual functioning as perceived by females and
males before, during and/or after treatment for their disease. The extent to which social
support and mood status affects sexual dysfunction is also identified. Lung cancer is one
of the most frequently diagnosed cancers in men and women, and continues to have an
unsatisfactory clinical outcome that can progress rapidly irrespective of treatment.
Consequently, people with lung cancer are at high risk for psychological morbidity. The
effect on the sense of being a sexual (feminine or masculine) person will, in turn, have an
effect on the individual and their partner. Therefore, optimal psychosocial support,
including support of sexual functioning, must evolve into a major management goal in
this previously understudied population. Once knowledge is attained, the marriage and
family therapist can positively influence quality of life at the appropriate point in time,

and through further study, provide research-based intervention.

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Importance of the Study

There are many systems affected by a chronic illness such as cancer, and they
may include (but are not limited to) the following:

1. Family relationships and friendships outside the home (human resources).
Through behaviors learned inside the family from parents and grandparents, and outside
the family from peers, all participating individuals acquire a repertoire of skills, attitudes,
and values to preserve and perform in the family, with friends, at work, and in the
community.

2. Family professions. The need to provide for family maintenance and to
achieve personal and family goals motivates the adult individual to work (Andrews,
Bubolz, & Paolucci, 1980).

3. Economic resources. Individual members and families are able to
contribute socially and economically through participation in market (industry and
agriculture) and nonmarket (human resource maintenance and household production)
activities, which positively impacts the family, community and society (Andrews, et al.,
1980).

4. Community resources. Interdependent systems that provide families with
(social) support include formal organizations and informal networks. Social welfare,
health care, and nonprofit organizations such as the American Cancer Society are formal
groups that provide required services. Informal networks (neighbors, friends, nurses,
support groups) are just as important because they provide valued assistance and human
nurturance.

5. Environment. According to Bubolz and Sontag (1993), the

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environment includes natural, human-constructed, and human behavioral (social-cultural)
components and this constitutes our life-support system. Environmental impact in this
client population includes the air necessary to breathe (which may be polluted by
cigarette smoke), space necessary to live in, and time spent while taking treatment for
cancer, managing the side effects, and for post treatment recuperation. Roles, rules,
decision-making, and other interactions such as attitude, love and trust will also be
modified and changed.

6. Family relationships inside the home. These relationships will include the
intimate relationship of the couple. Factors that impact this relationship in people with
lung cancer may be how the treatment/s will affect their sexuality. Many researchers
report that cancer and its treatment have an untoward effect on sexual function; this may
range from 40% to 100% (Derogatis & Kourlesis, 1981; Ginsburg, Quirt, Ginsburg, &
MacKillop, 1995; Quinlan, Epstein, Carter &, Walsh, 1991; Ryan, 1996; Schover, Evans
&, von Eschenbach, 1987).

In addition to the impact cancer has on the systems that support client/family
activities of daily living, the avalanche of physical and emotional upheaval creates a
psychosocial crisis. One of the quality of life changes that can occur due to cancer and
cancer treatment is sexual functioning. Most psychosocial studies that incorporate
sexuality exclusively, or as a variable, usually involve patients with “genital” cancers
(e.g. breast, gynecological, prostate, testicular) (Anderson, 1996; Anderson & Elliot,
1994; Fransson & Widmark, 1996; Meyerowitz, Desmond, Rowland, Wyatt, & Ganz,
1999; Smith & Reilly, 1994; Stanford, Feng, Hamilton, Gilliland, Stephenson, Eley, et

al., 2000; Syrjala, Schroeder, Abrams, Atkins, Brown, Sanders, et al., 2000; Young-

10

McCaughan, 1996). As a result, there are very few sexuality studies that include patients
with non-genital cancers (e. g. head and neck, esophagus, lung); this provides less than
optimal assessment and/or intervention relative to this populations’ psychosexual
anxieties (Gritz, Carmack, de Moor, Coscarelli, Schacherer, Meyers, et al., 1999; Monga,
Tan, Osterrnann & Monga, 1997; Siston, List, Schleser & Vokes, 1997).

Although there are some psychosocial studies related to individuals with lung
cancer, there are none that specifically pertain to sexual function during and/or after
treatment for this disease (Bergman & Aaronson, 1995; Bergman, Aaronson, Ahmedzai,
Kaaasa & Sullivan, 1994; Bernard & Ganz, 1991a, 1991b; Buccheri, Fenigno,
Topmburini & Brunelli, 1995; Cella, Bonami, Lloyd, Tulsky, Kaplan & Bonami, 1995;
Ganz, Lee & Siau, 1990; Ginsburg, et al., 1995; Gralla & Moinpour, 1995; Hollen &
Gralla, 1996; Hollen, Gralla, Kris & Cox, 1994b; Hopwood, Stephens & Machin, 1994;
Klemm, 1994; Ryan, 1996; Sama, 1993a, 1993b; Schag, Ganz, Wing, Sim, & Lee, 1994).
This is of particular importance because lung cancer will likely continue to be one of the
most common and life-threatening diseases in the coming century. Affirmation of the
importance of sexual function in this client population is significant because it validates
this individual’s right to continue to feel valued as a woman or a man even though they
have a formidable disease. Through a more empathetic understanding of the emotions
and behavior of this individual from a sexuality standpoint, the therapist will be able to
provide more sensitive support and enhance quality of life for both client and partner.

Ecologically speaking, specific knowledge about the impact of treatment on
sexuality is essential for marriage and family therapists to be able to provide timely,

appropriate and ample social support, optimal use of resources, and to implement

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intervention programs. Once this knowledge is ascertained, therapists will be encouraged
to become more aware of and more attentive to the sexual needs of individuals/couples
diagnosed with and being treated for lung cancer. The prevalence of sexual dysfunction

obtained from this study will also benefit future, more in-depth research.

12

 

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Research Questions
1. When adjusted for pre-treatment level of sexual functioning, are
there significant differences (alpha = .05) in sexual function within and between the two
treatment groups at 2 months and 4 months into treatment?
2. To what extent does age explain variation in level of sexual function in people with
lung cancer?
3. To what extent does gender explain variation in level of sexual function in people with
lung cancer?
4. To what extent does mood status explain variation in level of sexual function in
people with lung cancer?
5. To what extent does social support explain variation in level of sexual function in

people with lung cancer?

-13

Hypothesis
Ho 1: Sexual function as measured by the Derogatis Interview for Sexual Functioning,
Self-Report is the same for people with lung cancer after treatment of the disease as
it was before treatment.
Ha 1: Sexual function as measured by the Derogatis Interview for Sexual Functioning,
Self Report is lower for people with lung cancer after treatment of the disease than it was
before treatment.
Ho 2: Variation of sexual function is not explained by age for people with lung cancer.
Ha 2: Variation of sexual function is explained by age for people with lung cancer.
Ho 3: Variation of sexual function is not explained by gender for people with lung
Ha 3: Variation of sexual function is explained by gender for people with lung cancer.
H04: Variation of sexual function is not explained by mood status for people with lung
cancer.
- Ha4: Variation of sexual function is explained by mood status for people with lung
cancer.
H05: Variation of sexual function is not explained by social support for people with lung
cancer.
HaS: Variation of sexual function is explained by social support for people with lung

cancer.

-14

Theoretical /Conceptual Model

Lung cancer is the leading cause of cancer—related deaths in men 40 years of age
and older and in women 60 years of age and older (Greenlee, Hill-Harmon, Murray &
Thun, 2001). Research and education efforts have apparently begun to influence both
males and females, because incidence rates decreased 3.2% in men between 1992 and
1997, and have started to decline in women aged 40 to 59 (Greenlee et al., 2001).
However, lung cancer still accounts for approximately 31% of cancer deaths in men and
25% in women. Since 1987, lung cancer mortality rates continue to surpass breast cancer
rates in women (Greenlee et al., 2001).

Many individuals are initially diagnosed with metastatic disease (disease which
has traveled outside the lung to other areas of the body) that ultimately leads to death.
However, if the patient presents with disease diagnosed at an early stage, multimodal
therapies, such as surgery, chemotherapy, and radiation therapy are increasing overall and
five-year disease free survival rates (Langer, 1998). Individuals with lung cancer must
learn to adapt, not only to the physical, biological, and social conditions related to the
effects of the cancer treatment, but more specifically to how the disease will affect their
overall quality of life; this includes their interactions as females and males from a
sexuality perspective. The ability to profile whom may be at risk for the development of
sexual dysfunction during and/or after treatment will prevent undetected and untreated
problems.

Generally, when one speaks of sexuality, it is often assumed that sexual
intercourse is the issue. However, sexual functioning is much more than just the sex act

itself. The World Health Organization (1975) defines sexual health as the integration of

15

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the somatic, emotional, intellectual, and social aspects of sexual being in ways that are
positively enriching and that enhance personality, communication and love. Sexual
functioning connotes the totality of the human being, unlike the word sex, which
connotes a physiologic act. The broader term includes the socio-cultural, psychological
and ethical, as well as the physical components of sexual behavior (Hogan, 1985).
Because sexual functioning and human sexual response do not occur in the physical
realm alone, emphasis also must be placed on how the diagnosis of lung cancer and its
treatment may affect not only sexual function, but feelings experienced in the
psychosocial realm as well. The vector/mathematical model is useful for visualizing the
way in which various elements may combine to produce a state of sexual functioning
(Figure 1). The vector model of sexual desire combines the positive and negative aspects
of both physical and psychosocial factors to illustrate how a state of sexual desire is
produced at a particular point in time (Masters, et al., 1994). Likewise, this same model
can be used to illustrate possible positive and negative effects of treatment for lung
cancer and how they may affect the person’s total level of sexual functioning (e. g. sexual
cognition/fantasy, sexual arousal, sexual behavior/experience, orgasm, & sexual
drive/relationship). As well, during and after treatment, the aspects of social support and
mood status may affect sexual function in a positive or negative manner. Human
sexuality underlies the complete range of human experience and contributes to peoples’
lives in many ways; therefore, it is the purpose of this study to explore the relationship

between lung cancer and its treatment to possible dysfunction in human sexuality.

l6

THEORETICAL MAP

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Positive
HUMAN SEXUAL RESPONSE - LCOGN'T'ON/FANTASY]
PHYSICAL SATISFACTION
SEXUAL
BEHAVIOR/EXPERIENCES
GOOD HEALTH
WITHOUT CANCER
SEXUAL
DRIVE/RELATIONSHIP
DECREASEO/ABSENT
COGNITION/FANTASY
BIOPSY/SURGERY
bECREASEO/LACK OF
SEXUAL AROUSAL
LLUNG CANCEFfl
DECREASEO IN/ LACK OF
l CHEMOTHERAPY l SEXUAL BEHAVIOR/
EXPERIENCES
RADIATION THERAPY
L 1 [ PSYCHOLOGICAL SYMPTOMS?
Negative
PHYSICAL PSYCHOSOCIAL

Adapted from Vector Model in
Masters, Johnson & Kolodny (1994)

Figure l

-17-

 

Conceptually, the process unfolds in this way: once the individual has been
diagnosed with lung cancer via a procedure [e. g. bronchoscopy (visualizing with a
scope), or a type of biopsy], decision-making regarding the treatment process begins.
The patient may endure removal of a segment of lung, removal of a lobe of the lung, or
removal of one entire lung (rarely), and/or they may then begin treatment with
chemotherapy alone or chemotherapy and radiation therapy. If the patient is in poor
medical condition (e. g. an 80 year old woman with heart problems), they may offer
radiation alone. The diagnosis along with any of these treatments or combinations may
have an effect on the patients’ sexual functioning over a period of time. This process is
depicted on the conceptual map (Figure 2). The various components of sexual function
(e. g. sexual cognition/fantasy, sexual arousal, sexual behavior/experience, orgasm &
sexual drive/relationship) are interactive and also may influence one another. Likewise, a
high, intermediate or low level of social support and/or a positive or negative mood status
may also influence sexual function

The total environment of the individual with lung cancer changes abruptly with
diagnosis and commencement of treatment. Depending on how ill individuals perceive
themselves and their role (female, male, and/or feminine, masculine), the
inter-relationships with family and friends, neighborhood, community, and work will be
affected. Economic independence may require sacrifices and consumption of energy and
resources in an attempt to get through treatment and recover from illness. The
individuals’ ability to adjust and cope with the modification of their environment will
depend on their interaction within the ecosystem: perception of social support from

friends and family, current mood status that may include feelings of depression,

18

and reciprocal influence of all aspects of the illness.

Ecologically speaking, no human being lives in a vacuum nor can an individual be
completely independent. Rather, we continually interact with our environment that
encompasses physical, biological, social, economic, political, aesthetics, and structural
surrounds. There are three distinct but interrelated “environments” which comprise the
human ecosystem: natural, human constructed, and human behavioral. All resources
necessary for life are provided within these environments (Bubolz & Sontag, 1993).

Bronfenbrenner’s (1979) ecosystemic model consists of four separate, but nested
systems wherein the individual develops. They include the micro, meso, exo and macro
systems. The microsystem consists of the immediate environments where the developing
individual lives. This includes the activities, roles, and interpersonal relationships, and
the face-to-face interactions with living people (including a sexual relationship) and with
nonliving artifacts. The developing individual comes in contact with people (social
support resources) who also have their own belief systems, temperament and
personalities. This environment may include areas such as home, school, work or the
medical community. Important aspects of the individual to which Bronfenbrenner (1986)
pays attention include cognitive capabilities that account for competency of the
individual, socio-emotional aspects that account for personality and temperament (mood
status), and person as active agent (decision making). The mesosystem is the interface
between the microsystems containing the individual and how they interact and impact
one another. The exosystem comprises systems outside the personal Microsystems of the
individual which have a indirect impact on the developing individual, while the

macrosystem envelopes all of the other systems and influences or is associated with the

19

creation of our values, norms cultures and subcultures. Subcultures of a macrosystem
may include two parent families, single parent families, and families living in an urban
setting versus a rural setting (Bronfenbrenner, 1986). All of these systems will interact
and impact on the person/family who has recently been diagnosed with lung cancer.
Once knowledge is attained and because the marriage and family therapist has a systemic
background, she/he will be able to interact and intervene within these systems to

empower this person/family.

20

CONCEPTUAL MODEL

 

LSEXUAL BEHAVIOR/EXPERIENCES l

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A
SEXUAL I DRIVE/RELATIONSHIP l
COGNITIOIxt/FANTASY
lORGASMl
LSEXUALAROUSALI
SEXUAL FUNCTION
LUNG - TREATMENT
CANCER > FOR LUNG
DIAGNOSIS CANCER

 

 

 

 

 

 

F ' 2
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Conceptual and Operational Definitions

The dependent variable in this study is level of sexual function.

Conceptually, sexual function refers to natural bodily functions that begin in utero
and are in some measure subject to conscious control, as well as, feelings of masculinity
and femininity, gender identity, and body image (Fogel, 1990).

Operationally, level of sexual functioning will be measured by using the
Derogatis Interview for Sexual Functioning, Self-Report (DISF-SR) that includes, sexual
cognition/fantasy, sexual arousal, sexual behavior/experience, orgasm, & sexual
drive/relationship (Derogatis, 1987). Quantitatively, this self-report represents the status
and quality of the individual‘s current sexual functioning.

The independent variable in this study is type of treatment for lung cancer.

Conceptually, type of lung cancer treatment refers to chemotherapy only or
chemotherapy and radiation therapy.

Operationally, type of lung cancer treatment will be measured by indicating if the
patient received chemotherapy only or radiation therapy and chemotherapy. This
information will be obtained from the patient’s chart, from self-report, or from treatment
nurse report.

The control variables in this study are the patient’s gender and age, their
perception of social support, and mood status.

Conceptually, gender and age refers to all those men and women 18 years of age
or older diagnosed with lung cancer.

Operationally, gender and age will be measured by the patient’s socio-

demographic information form.

22

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Conceptually, social support refers to situational and perceived support including,
but not limited to, friendships, work relationships and kin relationships (e.g. marriage),
which help the individual adapt to stressful life experiences.

Operationally, social support will be measured by the Social Provisions Scale,
which includes attachment, social integration, reassurance of worth, reliable alliance,
guidance, and opportunity for nurturance (Russell & Cutrona, 1984).

Conceptually, mood status refers to current emotional well being, with an
inclination toward a positive or negative stance.

Operationally, mood status will be measured by the Derogatis Affects Balance
Scale that includes 8 primary affect dimensions, 4 positive and 4 negative. The 4 positive
dimensions are joy, contentment, vigor, and affection. The 4 negative dimensions are
anxiety, depression, guilt and hostility. This multidimensional mood and affects
inventory can measure the mood/affect status of community, medical, or psychiatric

respondents.

23

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CHAPTER TWO
Review of Literature

There is a growing body of literature that supports the fact that cancer affects the
family as well as the patient diagnosed with the disease (Burbie & Polinsky, 1992;
Germino, Fife, & Funk, 1995; Manne, 1998; Meyerowitz, Leedham, & Hart, 1998; Sama
& McCorkle, 1996). Weisman and Worden (1976) reported that people newly diagnosed
with cancer experience emotional distress, and during the first 100 days, concern is
focused on existential issues of life and death. Then, as they begin to learn to live with
cancer, they become refocused on health, work, finances, self and relationships, and they
can resume many normal activities. However, as Germino et a1. (1995) report, the
emotions and behavior of one family member will affect the family as a whole, and this is
an important aspect to remember as the sexual function of the individual with lung cancer
is examined.

Individuals with lung cancer report various distressing symptoms that interfere
with their activities of daily living and contribute to psychosocial concerns, especially
during treatment. These reports often encompass fatigue, a decline in physical health,
and an overall diminished quality of life (Hollon et al., 1994b; Sama, 1993a; Sama &
McCorkle, 1996; Varricchio, Frankel, Rittenberg, Sama, Smith & Wilkie, 1997). The
physical effects of the illness and its treatment are well documented, and various
interventions are in place to increase individual comfort. However, in order to enhance
psychosocial quality of life likewise, concerns must be identified and interventions

developed to maximize function and minimize distress.

24

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Until the past 15-20 years, sexuality was rarely, if ever, recognized as a factor that
could cause psychosocial distress, even though Dr. Mary Caldrone founded the Sex
Information and Education Council of the United States in 1964. A milestone for human
sexuality was set in 1966 when Masters and Johnson (1966) published their classic book
on the human sexual response, however, it was not until 1975 that the World Health
Organization addressed sexuality as an aspect of health (World Health Organization,
1975). Since this introductory period, research relative to this particular realm has
markedly increased, particularly in the field of cancer. However, most of the
investigative studies have been done in relation to genital cancers (e. g. cervix, uterine,
breast, testicular, prostate) or to cancer in general. Other cancer sites, like lung cancer
and head and neck cancer, have been relatively ignored.

A review of past and current literature will establish a theoretical base whereby
the present research can begin. Because of the paucity of specific sexuality studies
related to individuals with lung cancer, more of the literature to be reviewed will discuss
other cancer sites, especially genital and breast cancers.

Sexuality and Cancer

In 1985; Hogan provided a brief overview of sexuality issues associated with
cancer individuals. She includes the influence of cancer on sexual practices, the physical
and the psychosocial effects of cancer and its treatment on sexuality, and sexuality and
the dying individual. Hogan (1985) does not, however, indicate how this information
may assist the practitioner caring for individuals with a site—specific cancer.

Ingle (1990) reported many of the same general areas of concern for the cancer

individual and his/her sexuality, and gets more specific in relation to male and female

25

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physical effects, as well as fertility issues. General psychological and sociocultural
factors reviewed are helpful but not specific to the individual with lung cancer.

Schover & Jensen (1988), distinguished researchers in the field of cancer and
sexual function, provide an excellent overview of sexuality problems that commonly
occur in men and women with a chronic illness, and cite specific cancer related examples
in this review. They examine effects on both the individuals’ and the couple’s sexuality;
four main factors can be identified which include physical, body image, psychosocial and
relational concerns. Physically, low sexual desire, erectile dysfunction, female arousal—
phase dysfunction, and male and female orgasmic dysfunction may result from fatigue,
stress, chronic pain, nerve and/or vascular damage, neurotoxic chemotherapy, and
hormonal effects (Schover & Jensen, 1988). Body image disturbances and deficits in
self-esteem may result from premature aging due to decreased hormones, surgical
disfigurement, weight loss and other side effects of radiation and chemotherapy. In a
later reference, Schover (1989) speaks to psychosocial issues which includes, fertility
(both in young and middle—age couples), the possibility of an extramarital affair, a lack of
social support in unmarried patients and their reduced motivation to find a partner or even
to socialize. Couple relationships may also suffer during treatment for cancer if there is
lack of ability to show caring, share feelings or negotiate disagreements, role inflexibility,
or if the couple does not share similar needs for intimacy.

As the literature is examined according to the aforementioned four main factors
related to sexuality concerns, age and gender is noted in several of the studies. Obviously
gender is an important focus if the study is gender specific (e. g. prostate or breast).

These studies often reveal that, age notwithstanding, treatment with chemotherapy

26

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and/or radiation therapy can impact sexuality in a negative manner.
Physical Factors

Physically/physiologically, reports of sexual dysfunction following cancer
treatment with surgery, radiotherapy, and chemotherapy range from 10 to 90% (Syrjala et
al., 2000). Problems from surgical procedures usually stem from damage to the
autonomic nervous system, vascular compromise of the genitals, or endocrine effects.
However, Monga (1995) reports “disfigurement from any cause produces psychosocial
problems, altered body image, anxiety, and depression. Premorbid psychological status,
stability of the relationship, and coping skills will influence postoperative psychological
function. Psychosocial dysfunction is one of the major factors influencing sexual
problems in cancer patients” (p. 422). Schover, et al., (1987) note low sexual desire as a
common occurrence with patients who cope poorly with cancer and are depressed, while
Spiegel & Diamond (1998) explain that uncertainties with sexual function occur with as
many as 80% of breast cancer patients due to distress at treatment initiation.

Although many discussions in the cancer literature that emphasize sexuality relate
to the genital malignancies, there are some recent studies related to sexual function in the
head and neck cancer population (Siston, et al., 1997). Extent of disfigurement from the
cancer itself, its treatment with surgery, or treatment with radiation therapy can impact
the patient's quality of life, including their sexual life (Gritz, et al., 1999; Monga, et al.,
1997). In the Monga study, the mean age of the fifty-five patients who participated was
65.1 years (range 48 to 76). Nineteen patients were less than 65 years old and 36 were
over sixty—five. Although there was no significant relationship between age and interest

in sex between the two groups, the older patients were significantly more satisfied with

27

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their sexual partner (p < .05). Patients younger than 65 tended to perceive a lower quality
of current sexual functioning (p = .057), but read erotic material more frequently.
Patients over 65 reported higher rates of fantasizing and better functioning in the areas of
arousal and intercourse; there was no significant difference between the two groups in
satisfaction with orgasm (Monga et al., 1997). De Boer, McCormick, Pruyn, Ryckrnan,
& van den Borne (1999) reported physical symptoms that include speech problems, dry
mouth and throat, difficulty swallowing, and pain. These symptoms along with
disturbances in psychosocial functioning are reported to have a negative effect on sexual
functioning.

Treatment for prostate cancer is often associated with disruptive side effects that
frequently include urinary incontinence and sexual dysfunction. Generally, men treated
with nerve sparing radical prostate cancer surgery (removal of the prostate gland and
surrounding tissue) meet the criteria for potency, although only about 32 % experienced
normal rigidity of erections (Leandri, Rossignol, Gautier, & Ramon, 1992; Quinlan, et
al., 1991). Age, clinical and pathologic stage of disease, and the extent of nerve
preservation did correlate with potency after surgery. Even if men had operative sparing
of the neurovascular bundles (nerves and blood vessels that affect erection), those over 70
years of age had postoperative potency only about 22% of the time (Quinlan et al., 1991).
Bladder dysfunction and sexual impotency have also been reported after surgery for
colorectal cancers [incidence runs between 15-100% depending on where resection
(removal of tumor) takes place in the abdomen] (Koukouras, Spiliotis, & Scopa; 1991;
Santagelo, Romano, & Sassaroli, 1987; Stanford, et al., 2000). Erectile dysfunction

along with dry orgasm is experienced when patients undergo cystectOmy (bladder

28

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removal) for bladder cancer as well; incidence runs between 70-100% (Monga, 1995;
Schover, et al., 1986). However, Humey and Holland (1985) state that sexual desire is
usually not impaired. Testicular cancer surgery, which ranges from simple orchiectomy
(removal of the testicle) to extensive retroperitoneal lymph node resection (lymph nodes
removed from the groin up into the abdomen), can be the cause of dry orgasms, failure of
ejaculation and perhaps fertility problems (Dobkin & Bradley, 1991; Monga, 1995;
Schover & vonEschenbach, 1985).

In women, sexuality problems prevail most frequently in those who have been
treated surgically for gynecological cancers and can range from 0% to nearly 100%
(Anderson, 1987, 1996; Anderson & Elliot, 1994; Weijmar, Van de Wiel, Hahn & Van
Driel, 1992). Often, the frequency of intercourse is the only indicator of the quality of
sexual function, however, Schover, Fife, & Gershenson (1989) found that disturbances of
libido and orgasmic function frequently follow cancer treatment and postmenopausal
women are even more likely to experience dyspareunia (painful intercourse) along with
decreased desire and arousal. Anderson (1989) studied 47 women with early stage
gynecologic cancer prior to treatment and then at four, eight and twelve months post
treatment. Outcomes are compared with two matched comparison groups (18 women
treated for benign disease and 57 healthy women). Frequency of intercourse decreased
for the women treated for disease both benign and malignant. A decrease in sexual
excitement is pronounced for the women with disease and is more severe in women with
cancer. Of the women treated for cancer, 30% were diagnosed with a sexual dysfunction
(Anderson, 1987). More recently, Anderson (1996) reported on women treated for

gynecologic cancer and found that consequent to cancer treatment, women report

29

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problems with their ability to resume sexual intercourse. However, she also found that
preventive strategies at the time of cancer diagnosis are more effective than interventions
during recovery.

Radiotherapy can be just as devastating to both men and women. A decline in
sexual performance with the prevalence of erectile impotence, along with a decrease in
libido, has been reported from 10-84% in men undergoing external beam radiation for
prostate cancer (Banker, 1988; Monga, 1995; van Heeringen, Schryver, & Verbeek,
1988). Erectile impotence from radiation therapy may be caused by constriction of
vessels following treatment (Fransson & Widmark, 1996; Monga, 1995). Fransson &
Widmark (1996) studied 199 radiation patients with prostate cancer (mean age, 71 years),
and compared them to an age-matched group of healthy men. Results revealed that there
were higher levels of sexual dysfunction in the patient population; this was most obvious
in men less than 70 years old. Disturbance in the maintenance of sexual function was
prominent in men 70 to 74 years; men over 74 years did not perceive decreased sexual
function as a major problem. General health and sexual function prior to treatment is
thought to be related to prevalence (Monga, 1995). Radiation to the testicles can also
lead to impotence along with infertility, and can lead to an indirect hormonal effect
causing loss of libido, erectile difficulties and ejaculatory problems (Hussey, 1994).
Pelvic irradiation in women is responsible for ovarian failure and causes physical effects
such as amenorrhea, sterility, vaginal dryness, fibrosis, ulceration, and infertility (Lamb,
1995). This, in turn, causes loss of femininity, libido, orgasm, a lack of pleasure,
dyspareunia and postcoital (after intercourse) bleeding (Bruner & Boyd, 1999; Cust,

Whitehead, & Powels, 1989; Schover, et al., 1989).

30

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Many chemotherapy agents affect gonadal function and these effects are classified
as immediate, early or late. Men experience injury to testicular function, and atrophy
along with oligospermia (decreased sperm) or aspermia (no sperm) can occur (Monga,
1995; Rieker, 1996). This type of endocrine dysfunction can lead to a decrease in sexual
desire and erectile dysfunction (Drasga, Einhom, & Williams, 1983; Monga, 1995).
Likewise, women encounter amenorrhea and menopausal symptoms, vaginal dryness and
loss of elasticity, and experience dyspareunia due to the dryness and irritation from
chemotherapy induced ovarian failure (Andrieu, Ochoa-Molina, 1983; Ganz, Greendale,
Petersen, Zibecchi, Kahn & Belin, 2000; Gershenson, 1988; Gradishar, & Schilsky, 1988;
Lamb, 1995;). Schover, Montague & Schain (1996) assert that women over the age of
thirty who receive combination chemotherapy will stop menstruating and usually don’t
resume menses after treatment ceases. Kaplan (1992) reports on the “estrogen deficiency
syndrome” and the “female androgen deficiency syndrome” due to chemotherapy
treatment. Both syndromes can lead to problems with the female excitement phase,
libido and orgasm, response to sexual stimulation, and loss of sexual energy and erotic
pleasure. Current sexual functioning was described in sixty-seven women diagnosed
with breast cancer (mean age 56.2 years) who were treated with chemotherapy or
endocrine (hormone) therapy (Young-McCaughan, 1996). Controlling for endocrine
therapy, the women treated with chemotherapy were more likely to report weight
changes, hot flashes, and mood swings. They were also more likely to report vaginal
dryness, a decreased libido, dyspareunia and more difficulty achieving orgasm.

Body Image

“Body image involves an individual’s perception of his or her body and is

31

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derived from past experiences, social interactions, and current sensations in response

to input received from vision, touch, hearing, and the perception and reactions of others”
(Shell, 1998, p. 183). Furthermore, a positive body image is significantly linked to
sexual satisfaction (Masters, et al., 1994). Katz, Rodin, and Devins (1995) affirm that
impaired body self-esteem (their descriptor for body image) in individuals with
disfiguring cancer treatments is one of the most consistent empirical findings in their
literature review. Individuals with a diagnosis of lung cancer not only experience a most
feared diagnosis often with a fatal result, but many also endure months of insult to their
bodies and body image. Temporary or permanent disfigurement, wounds and scars cause
a level of distress that many patients hesitate to admit. Less severe alterations (e.g.
weight loss, skin changes, hair loss, shortness of breath) can be just as devastating (Shell,
1998). In one study, 40 cancer patients who had experienced hair loss due to
chemotherapy treatment reported a lost sense of control and power over their very being,
along with changes in self-perception, self-esteem, and sense of self (Pickard-Holley,
1995).

Breast cancer and one of its treatments, mastectomy (removal of the breast), is
known to affect the concept of body image in relation to a loss of femininity and
disruption of body image (Lasry, Margolese, Poisson, Shibata, Fleischer, & Lafleur, et
al., 1987; Margolis, Goodman, & Rubin, 1990; Meyerowitz et al., 1999; Schover,
Yetman, Tuason, Meisler, Esselstyn, Herman, et al., 1995).

Men who must undergo radical prostatectomy for cancer also encounter
disturbing problems with body image (Ofman, 1993). If “nerve-sparing” surgery is not

possible or ineffective, the inability to achieve or maintain an erection will devastate a

32

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man’s body image and self-esteem, regardless Of age. Urinary incontinence may curtail
social activities because this circumstance is difficult to conceal and is associated with
uncleanness (Shell, 1998; Stanford, et al., 2000). Hormonal manipulation is usually the
treatment of choice if prostate cancer recurs, and these medications can cause hot flashes,
mood swings, and a thinning of the hair, in addition to impotency, all of which can have a
negative influence on male body image (Messing, Manola, Sarosdy, Wilding, Crawford,
& Trump, 1999).
Psychosocial

Many researchers have clearly shown that cancer treatment can be particularly
destructive from an emotional and social point of view. Head and neck cancer is
particularly devastating because it usually affects the facial area and surgeries are often
quite mutilating. Gamba, Romano, Grosso, Tamburini, Cantu, & Molinari (1992) studied
66 head and neck cancer patients from 6 months to 8 years after surgery. These patients
were divided into two groups relative to degree of disfigurement (minor = 36%; extensive
= 64%). Interviews were conducted with close-ended questions that assessed self-image,
relationship with partner, family, and friends, and overall impact of therapy. There was a
significantly higher impact in extensive vs. minor groups regarding changed self-image
(57% vs. 25%, p<. 05), a worsened relationship with partner (27% vs. 0%, p<. 05), a
reduced sexuality (74% vs. 39%, p<. 01), and increased social isolation (36% vs. 12%,
p<. 05) (Gamba, et al., 1992). Espie, Freelander, and Campsic (1989) assessed a
“cohort” of patients who had major oral surgery for evidence of psychosocial
disturbance. Forty-one percent had significant levels of psychological distress

(symptoms) comparing mood disorder, social dysfunction or both. Predictors revealed

33

that females and young people were at greater risk for distress. Monga et al. (1997)
examined fifty-five of 101 head and neck cancer patients who were willing to answer
several questionnaires (e. g. Derogatis Inventory of Sexual Functioning, Multidimensional
Health Locus of Control). They found that the majority of these patients experienced
problems with sexual functioning, and that younger patients had poorer sexual function
than those over the age of sixty-five.

Disruption in activities of daily living associated with physical and emotional
sequelae is often described in the literature due to a breast cancer diagnosis and treatment
(Ganz, Rowland, Desmond, Meyerowits, & Wyatt, 1998; Meyerowitz, et al., 1999).
Bloom, Cook, Fotopoulis, Palmer, Gates, Brigham, et al., (1987) reported on data from
412 women, studied over a 1-year period of time. Those studied included women treated
for various maladies that included, mastectomy, cholecystectomy, biopsy for benign
disease, and a group of healthy women. None of the women experienced pre-existing
psychiatric illness. Greater psychological distress related to social and interpersonal
relationships was seen in the mastectomy patients, however, their overall findings suggest
that the risk is low for the development of severe reactive anxiety or depression in
women treated with mastectomy for breast cancer. There are also accounts among
women with breast cancer that describe the development of sexual avoidance at diagnosis
because they anticipate rejection by their spouse, even though men often “tune out” the
missing breast and focus on the pleasure of lovemaking (Kaplan, 1992). In their study of
fifty breast cancer patients, half of who were premenopausal and half who were not,
Ghizzani, Pirtoli, Bellezza, and Velicogna (1995) found that good functioning of the

marital relationship aided in the adjustment to illness in the younger women. The

34

menopausal women, however, depended more on an extended network of emotional
support. Marital adjustment was also associated with adequate sexual functioning in the
younger cohort (Ghizzani, et al., 1995). Gamba et a1. (1992) reported a worsened
relationship with the partner in their study with sixty-six individuals with head and neck
cancer. Those with a greater degree of disfigurement experienced more relationship
problems, along with a changed self-image and reduced sexuality. Although the
literature does reveal disturbance in couple relationships among men with testicular
cancer, it tends to be moderated by flexibility in relationships, good marital
communication patterns, mutual supportiveness and previous marital satisfaction (Gritz,
Wellisch, & Siau, 1990).

Through a thorough literature review, it becomes clear that psychosocial research
and intervention is scant for the individual with lung cancer, and no studies were
identified that dealt specifically with sexuality or sexual function before, during or after
treatment for lung cancer. A study by Cella, Orofiamma, Holland, Silberfarb, Tross,
Feldstein, et al., (1987) revealed the relationship of distress to the extent of disease and
performance status in 455 patients with small cell lung cancer. Clearly, the study gives
the reader only broad-based information and does not specifically touch on sexuality
problems that can arise. The association between extent of disease (ED) and performance
status rating (PSR) and the outcome of psychological distress in this population was
investigated. Psychological distress was measured by the standardized Profile of Mood
Status (POMS). "Gender, age, marital status, education, performance status, extent of
disease and two relevant interaction terms (PSR X ED and Gender X ED) were analyzed

using multiple linear and hierarchical regressions. The final index resulted in five levels

35

of ph
level
mod:
with
(199
cane:

1W0-

rhea.
(Gin
5m.
in re

tWer

IUDD

C

of physical impairment, which bear an approximately linear relationship to increasing
levels of distress (p. < .001). These data suggest that PSR is an important factor in
modeling POMS distress at both levels of ED, and that ED becomes an influential factor
with poorer performance status only" (Cella, et al., 1987, p. 1661). Bernard and Ganz
(1991a, 1991b) reviewed the literature since 1975 regarding psychosocial issues in lung
cancer patients and concluded that a number of areas needed further investigation. This
two-part review placed emphasis on the multidimensional construct of quality of life, and
sexual function is included within this construct. They also identified areas for future
investigation and state that, “our review and recommendations emphasize the need for
integrating the evaluation of psychosocial issues into the routine medical care of the lung
cancer patient.” (Bernard & Ganz, 1991, p. 484). A Canadian study examined psychiatric
illness and psychosocial concerns in 52 newly diagnosed lung cancer patients, 75% male
and 25% female; ninety-four percent were 50 years of age or over. Of the 20 outcome
measures, one was related to the patients' sexuality and that was "loss of libido"
(Ginsburg, et al., 1995). They found that this patient population commonly experienced
symptoms of potential psychiatric significance and psychosocial concerns. Specifically,
in regard to sexuality concerns, 25 (48%) acknowledged loss of libido; this was severe in
twenty-seven percent. (Ginsberg et al, 1995). Twenty-nine percent were concerned about
their families and how they would cope, and eight percent worried about work and
finances, however good family support systems were evident in most cases.

Sama (1993b) reported on a group of 69 women (average age 61 years) with
lung cancer and the impact this disease had on quality of life. There is greater

disturbance in their quality of life than in women with other cancers, particularly in

36

women with recurrent lung disease. They have more problems, greater psychological
distress, and greater marital dysfunction. There is a 38% decrease in sexual activity;
many are no longer interested in sex, nor do they feel sexually attractive (Sama, 1993b).
Ryan (1996) has offered information on the role of behavioral medicine as an approach to
several of the psychosocial issues associated with lung cancer in women. She reports that
behavioral interventions such as relaxation, meditation, and social support may be used to
augment medical treatment for nausea and vomiting, decrease painful suffering, and
decrease anxiety associated with shortness of breath. They may also be used to promote
a sense of control, reduce emotional distress, and enhance overall quality of life and
hopefulness (Ryan, 1996). In a sample of 56 lung cancer patients (mean age of 60 years,
62% male), Klemm (1994) explored the correlation between daily hassles, demands of
illness and social support to psychosocial adjustment. She found that demands of illness
were predictive of psychosocial adjustment (higher scores meant decreased adjustment).
Subjects reported generally high social support, low daily hassles, and moderately low
demands of illness (Klemm, 1994). Finally, quality of life was assessed in adult
survivors of lung, colon and prostate cancer. The investigators reported significant
physical, psychosocial, sexual, medical interaction, and marital problems in all three
groups (Schag, Ganz, Wing, Sim, & Lee, 1994). However, lung cancer survivors
experienced more problems than the others and it was determined that "patients who
survive cancer do not return to a state of normal health" (Schag, et al., p. 127).

In a recent literature review, Manne (1998) examined the impact of cancer
(breast, lung, prostate, colon, and testicular) on both the patient and the healthy spouse.

She explained that a cancer diagnosis can have a significant impact on the family system,

37

and

dit'i

rese
for

pan
indi
P311
kno
AttI
Slut

effe

and that “an illness in one spouse can alter the couple’s emotional balance, finances,
division of responsibilities, and social activities” (Manne, 1998, p. 188). Findings
suggest that distress levels are likely to increase over time in couples who experience
disease with a poor prognosis which is likely to recur (Manne, 1998).

Clearly when the literature is reviewed, it becomes evident that psychosocial
research and intervention related specifically to sexual function and sexuality is available
for various cancer diagnoses, especially breast and prostate cancer. However, there is a
paucity of information regarding the psychosocial and sexual health needs of the
individual with lung cancer. It is essential that marriage and family therapists,
particularly those working within the medical community, become more aware of,
knowledgeable, and more attentive to the needs of individuals with lung cancer.
Attention to symptoms and concerns can then be addressed in a systematic way. This
study will investigate how treatment for lung cancer impacts sexual function, and what

effect social support and mood status may contribute.

38

disco
of its

Septe

previc

SeXUal
Sexual,
Patient
hDWCVI
being 1
qUality
We of
tIierefOr
SexItal d

.1

di'SfunCt

CHAPTER THREE
Methodology
Assumptions

A set of assumptions lies behind this research study that are listed and then
discussed. Assumptions are “something taken to be true even though the direct evidence
of its truth is either absent or very limited” Dr. Norma Bobbitt (personal communication,
September, 1997).

Metatheoretical Assumptions: Assumptions about this research in relation to
previously created theoretical assumptions about sexuality.

Assumption 1: This is an important area to study.

This research makes an important contribution to knowledge related to human
sexuality. Because no investigator has studied lung cancer patients and how their
sexuality is affected by treatment for this disease, this research is deemed “good”. This
patient population is often considered irrelevant because of their poor prognosis,
however, now that they are living longer, it is necessary to care for the whole human
being, not merely their cancer and its physical symptoms. This provides for a better
quality of life. Masters and Johnson (1966) tell us that one half of all couples have some
type of sexual problems during their relationship, and these are healthy individuals. It is,
therefore, assumed that the patient population with lung cancer may have some type of
sexual dysfunction during and after their treatment.

Assumption 2: There is a need to develop theory about the possible sexual
dysfunction in lung cancer patients.

The diagnosis of lung cancer continues to increase in females and to decrease

39

0an
the)
is. I
rela

evic

[1'63

SEXI

witl
Ace
PS,“
any

fLinc

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ape

this
Olhe

(Ant

only slightly in males. Because these patients are beginning to live somewhat longer,
they deserve to have the same quality of life that other patients with cancer claim. There
is, however, a paucity of theory development related to their sexual needs. Theory
related to healthy individuals and the factors that affect their sexual desire is already
evident (Masters, et al., 1994; Snarch, 1991, 1997).

Social Definitionist Assumptions: Assumptions regarding lung cancer and its
treatment and how the person perceives the effects on their sexual function.

Assumption 1: Different treatments create different outcomes related to the
sexuality of patients with lung cancer.

Research has examined how different treatments affect the sexuality of patients
with other types of cancer such as breast, cervical-uterine, prostate, and testicular.
According to Bernard and Gantz (1991a, 1991b), people with lung cancer have many
psychosocial issues and concerns. They have not been studied sufficiently to reveal
anything specifically related to their perception of how treatment affects their sexual
function and/or whether dysfunction is present.

Assumption 2: A contributory intervention related to sexual function, created for
patients with lung cancer who will be or are taking treatment, is interpreted as promoting
a positive outcome during and after completion of treatment.

The outcomes that are to be expected would have to be specified. The basis for
this assumption is the fact that positive outcomes have been realized for patients with
other types of cancer; they have been effective and interpreted by the patient as positive

(Anderson, 1987; Schover, 1989).

40

Research Design

This exploratory study measured level of sexual functioning, social support,
and mood status of lung cancer patients, using the Derogatis Interview for Sexual
Functioning, Self Report: Female or Male Version (DISF-SR) (Derogatis, 1987), the
Social Provisions Scale (SPS) (Cutrona & Russell, 1987), and the Derogatis Affects
Balance Scale (DABS) (Derogatis, 1975a) respectively in two different treatment groups
at three points in time. The DISF-SR (female or male version), SP8, and DABS were
given to patients 1) at first diagnosis (diagnosis done by biopsy or lung surgery), either
pre-treatment or within 3 weeks of initiation of treatment, 2) at 2 months after first
measure, and 3) at 4 months after first measure. Treatment groups are designated
according to type of treatment: chemotherapy only and chemotherapy preceded, followed
by, or concurrent with radiation therapy. A measurement of sexual functioning, social
support and mood status taken after diagnosis, but before the patient is too far into
treatment, reduces error variation in the dependent variable.

Data Collection Procedure

The nursing staff of out patient chemotherapy and radiation therapy units was
enlisted to identify newly diagnosed lung cancer patients, and notified the investigator of
their admission to the department/office. If the investigator was not on site, the nurse
requested permission from the patient for the investigator to call and explain the study to
them via the telephone. The investigator called remote sites on a weekly basis to
ascertain whether there were newly identified patients to be called.

The investigator also identified patients. Once a subject was identified, the

investigator determined eligibility for participation in the study. An explanation of the

41

study
exam
obtaii
If the
DSFI
subje
1110111.
apprc
surve
DISF
Cons:
other

andt‘

infon
Cllhgl
date,
I90k .
Clinic
[001; 1

study given by the investigator took place privately with the subject, either in an
examination room, the investigators’ office, or via telephone, and informed consent
obtained (See Appendix A), along with patient sociodemographic data (See Appendix B).
If the subject was contacted in person, the study was explained and they were given the
DSFI-SR, the DABS, and the SP8 to read before signing the informed consent. The
subjects were informed that they would be surveyed initially, and at two month and four
month intervals after the first survey had been completed. Whether the subject was
approached in the clinic or via the telephone, they were always instructed to read over the
surveys first before signing the consent, especially because of the sensitive nature of the
DISF-SR. The subjects were encouraged to ask questions related to the surveys or the
consent if they did not understand the time frame, how to complete them, or if they had
other concerns. The subjects were reminded that they were not obligated to participate
and that they could discontinue the study at any time.

If the subject agreed to participate after reading and understanding the surveys,
informed consent was obtained. The subjects were offered a copy of the consent, and
either completed the surveys at the Clinic, took them home and returned them at a later
date, or completed and returned them via the mail. Completion time for all three surveys
took approximately 15 to 20 minutes. If the subjects completed the instruments at the
Clinic, the investigator remained nearby to answer questions of any kind. If the subjects
took the surveys home or if they were contacted via telephone, a toll free number to the
investigators’ office was provided in case there were questions.

If the subject was contacted via telephone only, again, the study was explained in

depth. If the subject agreed to have the survey forms sent to them, they were reminded

42

that there was no obligation to participate. Whether or not they chose to participate, they
were requested to send the surveys back. A self-addressed, stamped envelope was
provided for the subject to minimize time and cost for them.

Those subjects who agreed to participate were studied over a four-month period
from the time they completed the first survey providing they stayed alive, were without
brain metastasis, and were able to complete the instruments. After the initial
administration of the DISF-SR, the SP8, and the DABS, telephone contact was
maintained with the subjects so follow-up surveys could be administered. If the subject
was not present at the clinic at the specific two or four month interval, the subject was
called on the telephone and the surveys were mailed to their home to be completed.
Subjects from whom surveys were not returned within two weeks received a follow-up
phone call from the investigator as a reminder to complete the surveys and send them
back to the investigator.

Protection of Human Participants

An explanation of the study by the investigator took place in the treatment room,
the investigators’ office, or via the telephone and informed consent obtained. Because of
the sensitivity of the subject matter of this study, a private room was used to ensure the
privacy of the individual subject. The investigator, and only the investigator, obtained
the sociodemographic data after informed consent was obtained. Completed surveys and
sociodemographic forms were coded to correspond with the consenting subject’s name.
The coded sheet was kept separately from the completed surveys and sociodemographic
forms. No one but the investigator had access to the coded sheet and it was used only to

contact individuals for follow-up. All materials related to the subjects were kept under

43

lock and key in the investigator’s office. In the final report, all data was aggregated and
no subject was singled out or identified.
Setting and Sample
This study was primarily conducted in a chemotherapy out patient clinic and a
radiation therapy department in a cancer center in the south. Due to the fact that patient
accrual was slow, the study branched out to cities in close proximity of the cancer center.
Again, due to slow accrual, it was decided to extend the study to lung cancer patients on
the Internet. The sample consisted of all patients, male and female, identified in these
settings with a new diagnosis of small cell or non-small cell lung cancer. Information
about the type of malignancy, the treatment received, and other clinical data was obtained
from the patient, the patient’s clinic chart, and/or from the nurse who identified the
patient to the investigator. The investigator received pathology reports for fifty-five of
the 59 participants. Patients were eligible for the study if they met the following criteria:
1. the patient must be 18 years of age and older
2. the patient must have a diagnosis (new or recurrent) of small cell or non-
small cell lung cancer confirmed by pathology report or by patient report
3. the patient may have been diagnosed via bronchoscopy, biopsy (needle or
open lung), wedge resection (portion of the lung removed), or removal of
a lobe of the lung
4 The patient could have any stage disease (I through IV)
5. the patient must be able to read, understand, and speak English
6. treatment must consist of chemotherapy only or chemotherapy

preceded or followed by, or concurrent with radiation therapy

6. all patients must give informed consent to participate
7. patients with other forms of cancer (excluding basal-cell skin cancer) who
are disease free for 10 years or more will be eligible.
Patients were not eligible if:
1. the patient had prior treatment with Chemotherapy or radiation therapy
within 10 years.
2. the patient was found to have brain metastasis during the course
of treatment.
Over an 18-month period of time, a sample size of 59 patients was accrued: 23
(39%) patients in the chemotherapy only group and 36 (61%) patients in the
chemotherapy and radiation group. There were 46 (78%) non-small cell cancer patients
and 13 (22%) small cell patients: 32 female and 27 male patients. When patients became
ineligible or died during the study period, an attempt was made to replace them.
Permission for this study was requested from Michigan State University, as well as from
individual physician’s offices.
Instrumentation
The dependent variable, difference in sexual functioning, was measured using the
Derogatis Interview for Sexual Functioning, Self Report (DISF-SR) (Derogatis, 1987,
1997). This self-report is designed to measure the quality of current sexual functioning in
quantitative terms. The DISF-SR is a multidomain instrument designed to assess sexual
function. This self-report assessment modality was created along with an interview
version. The author concluded that some measurement applications require the increased

flexibility of the clinical interview, while others may be more suitable to respondent self-

45

report (Derogatis, 1997). First, the interview version, DISF, was created and submitted
for validation. Development of the DISF-SR followed and care was taken to design
self—report items equivalent to the interview questions.

The DISF-SR is composed of twenty-five questions that measure sexual function,
and includes five separate domains that essentially parallel the sexual response cycle:
sexual cognition/fantasy, sexual arousal, sexual behavior and experience, sexual orgasm,
and sexual drive and relationships (Masters & Johnson, 1966; Derogatis, 1987). Each
domain has from four to six items (five items for sexual cognition/fantasy, arousal, and
behavior/experience, six items for orgasm, and four items for drive/relationship) that are
preceded by a question. Each item is rated using frequency or satisfaction scales. Due to
the authors research experience in human sexuality, he chose to use “nine-point
frequency scales (0 = not at all and 8 = 4 or more times per day) for the first three
domains, five-point satisfaction scales (0 = not at all and 4 = extremely) for the fourth
domain, and a combination of nine-point and five-point scales for the fifth domain”
(Derogatis, 1997, p. 294-295).

The DISF-SR can be interpreted on three levels: the item score (e. g., “Feeling a
sense of relaxation and well-being after orgasm”), the domain score (e.g., Sexual
Cognition/Fantasy), and the total score (e.g., DISF-SR total score) (Derogatis, 1987). To
calculate the item “raw” score, the patient is asked to rate each item (e. g. for arousal the
rating is 0 to 8); a higher score represents better functioning. When each subscale within
a domain is totaled, the domain “raw” score is realized (the range is 0 to 40 for fantasy,
arousal, and behavior subscales; the range is zero to 24 for orgasm and for the drive

subscales). Finally, the total “raw” score from all five domains is added to secure

46

the total score. All raw scores are converted to standardized Area T-scores.

Representative norms have been developed for the DISF and the DISF-SR
based on several hundred nonpatient community respondents (samples of 122 and 277,
respectively) (Derogatis, 1997). The norms are gender specific. They are represented as
standardized scores in terms of Area T-Scores, and Area T-scores provide accurate
percentile equivalents (i.e., T-score of 30 = 2nd percentile; T-score of 40 = 16‘h percentile;
T-score of 50 = 50‘h percentile; T-score of 60 = 84th percentile; T-score of 70 = 98"I
percentile, etc.) (Derogatis, 1987).

“Area T—scores are generated through a normalizing transformation that is

superior to simple linear transformations in that it ensures that the actuarial

characteristics of the normative sample are retained. Such transformations
preserve the centile equivalency both within and across respondents. . .This is so
whether comparisons are being made across individuals or across domains within

a single individual’s DISF/DISF-SR profile. The latter feature enables

meaningful comparisons of strengths and weaknesses within an individual’s

sexual functioning profile. The former characteristic enables an accurate estimate
of the level of enhancement or decrement of an individual’s (or group’s) level of

functioning relative to the normative sample”(Derogatis, 1997, p. 295).

In interpreting DSFI subscales, deviations below the 50th percentile are
interpreted as relative deficiencies in important aspects of sexual functioning, while
elevations above the 50th percentile are viewed as relative strengths.

Administration time for the DSIF-SR is approximately 15 minutes; this is about

five minutes less than the DISF takes to complete. Repeated experience promotes

47

reduced administration time with either instrument. Derogatis (1987) reports that the
DISF-SR can also be used to evaluate patient sexual performance by the spouse,
with certain modifications in format.

Internal consistency and test-retest reliability data for the DISF/DISF-SR are
reported using samples of 168 and 122 patients respectively (Derogatis, 1987). Internal
consistency coefficients tend to be high and well within an acceptable range; orgasm
and cognition/fantasy reveals the highest consistency at .80 & .79 respectively,
while behavior/experience at .77, arousal at .76 and drive/relationship at .74 are also
acceptable values. Test-retest coefficients are based on a 7-day retest interval and range
from .80 to .90; the stability coefficient for the DISF-SR is .86 (Derogatis, 1987).

Interrater reliability coefficients were established by 16 clinician/raters training
for a multicenter drug trial. DISF domain coefficients demonstrated high values as
follows: orgasm at .84, drive/relationship at .86, behavior/experience at .88, arousal and
cognition/fantasy at .90 and .92 respectively. The Interrater coefficient total score was a
convincing .91.

The DISF/DISF-SR clearly exhibits construct independence and validity with low
correlations among the domain scores and moderate to high correlations between
domains and the total score (Derogatis, 1987). Based on two normal (168 individuals)
and one sexually dysfunctional group (26 women with female orgasmic disorder),
Pearson product-moment correlations are provided. The mean domain intercorrelations
range from .23 to .39, while the average correlations between domain and total score are

.60 to .71 (Derogatis, 1987).

48

A principle components analysis predicated on the DISF-SR records of 252
subjects with erectile disorder (DSM—IV diagnosis) was undertaken to validate the
instrument’s internal structure (American Psychiatric Association, 1994). The men were
participants in a multicenter drug study. A factor pattern matrix resulted in six factors,
“accounting for 71% of the variance in the matrix [and] were retained on the basis of a
mineigen criterion” (Derogatis, 1997, p. 297). The first two factors had high loadings
ranging from .75 to .89, and they represented domain four and one respectively. Factor
one had one external item that loaded on domain five. Factor three represented domain
three, but two out of five items did not load on this domain. These items, instead, loaded
on factor four. This was thought to occur because factor four represented an
autoeroticism dimension and the said items (item 3.1 “Reading or viewing erotic books or
stories” and item 3.2 “Masturbation”) established high loadings on this factor (Derogatis,
1997). The item 2.4 “Experiencing a full erection during masturbation” from the arousal
domain loaded onto factor four, as well. Factors five and six substantiated domains two
and five, although they had a larger range, between .41 and .89. Derogatis (1997) reports
that “overall, 21 out of 25 DISF/DISF-SR items (i.e. 84%) had factor loadings highly
consistent with the hypothesized domain structure of the instrument” (p.299).

Predictive validity for the DISF-SR is demonstrated through two studies that
involved 43 men diagnosed with prostate cancer who were to undergo radiation therapy
(Zinreich, Derogatis, Herpst, Auvil, Piantodosi, & Order, 1990a, 1990b). At the time of
diagnosis, the DISF-SR was used to screen for impotence, although detailed clinical
evaluation dictated conclusive criterion for the patient’s erectile status. The 43 men were

categorized as follows: 16 (37%) were determined to be fully functional, 15 (35%) were

49

marginally functional, and 12 (28%) were diagnosed with male erectile disorder
according to the DSM-IV (Diagnostic and Statistical Manual) (American Psychiatric
Association, 1994). Their DISF-SR scores all fell into the lower one-third of the
normative distribution with DISF-SR mean total scores at 56.7, 29.2, and 17.6
respectively (Derogatis, 1997). Regarding these scores, the investigator reports that,
“they are in the ordinal order one would anticipate if the test was a valid measure of
sexual functioning, and differences between the groups were statistically significant, F =
5.63, p < .01” (Derogatis, 1997, p. 301). Further analysis using logistic regression placed
16 patients into a sexually functional group and 27 patients into a sexually dysfunctional
group. For each one-point drop in the DISF score, the probability for sexual dysfunction
increased .88 (significance, p < .002; 95% confidence interval at .82 to .96). DISF—SR
discriminative efficiency is high with sensitivity at 89%, specificity at 75%, and
predictive value of a positive is 86%, therefore verifying the sensitivity to quality of
sexual functioning (Derogatis, 1997). The DISF-SR has also been employed in a large
study examining sexuality in head and neck cancer patients (Monga et al., 1997). Fifty-
five of 101 consenting patients participated and most reported arousal problems, over half
had orgasmic problems, and 58% didn’t participate in sexual intercourse. However, most
of these patients were not depressed. Overall, although this population experienced
various sexual problems, sexuality was a priority in most of the patients studied (Monga
etaL,1997)

The control variable, social support is measured using the Social Provisions Scale
(SPS). This is an instrument that assesses different facets of social support, and has been

used in several studies to examine how six individual social provisions influence

50

adaptation to stress in different populations (Baron, et al., 1990; Cutrona, 1989; Cutrona,

Cole, Colangelo, Assouline, & Russell, 1994; Russell & Cutrona, 1991). The scale

consists of 24 items, with four items assessing each social provision. Of the four items in

each provision, two are worded in a positive manner and two in a negative manner. “A

score for each social provision is derived such that a high score indicates the individual is

receiving that provision” (Russell & Cutrona, 1984, p.1). The six social provisions to be

measured were based on the theory of Robert Weiss concerning the provisions of social

relationships (Weiss, 1974). They are as follows:

I.

II.

III.

IV.

VI.

Attachment: a close, intimate relationship with another person...

Social Integration: being enmeshed in a social network. . .where the person
shares common interests and engages in social activities.

Reassurance of Worth: relationships with colleagues at work, where the
person derives a sense of competence and esteem through relationships
with others.

Reliable Alliance: usually provided by relationships with kin...

Guidance: having individuals whom the person feels have knowledge and
expertise in certain areas that can be relied upon for advice.

Opportunity for Nurturing: typified by the parent-child relationship...

(Russell & Cutrona, 1984)

These constructs are designed to permit valid assessment of perceived social

support. Therefore, respondents are asked to rate the degree to which their social

relationships are supplying each of the six provisions previously mentioned. A Likert

scale is used with l = strongly disagree, 2 = disagree, 3 = agree, 4 = strongly agree.

51

Some of the items are reversed before scoring. Time needed to complete the scale is
approximately five to seven minutes.

Reliability analysis for the revised (24 item) Social Provisions Scale was

undertaken with a sample of 1792 subjects: 1183 introductory psychology students
(Cutrona & Russell, 1987), 303 public school teachers (Russell et al., 1987), and 306
military nurses (Constable & Russell, 1986). Reported reliabilities for the six social
provision subscales proved adequate with coefficient alphas ranging from .653 to .760;
reliability for the total SPS score was .915 (Cutrona & Russell, 1987).

Confirrnatory factor analysis was conducted to evaluate the factor structure of the
scale. The same sample of 1792 students, teachers and nurses participated. Based on
their responses, a covariance matrix was computed and initial analysis evaluated the fit to
be quite good, X2 (237. N = 1792) = 1690.91, given the large number of subjects to
respond. Although consistent differences in patterns of association with various outcome
variables have been found for the six provisions, factor analysis does support the six-
factor structure. “The correlations among the social provisions appear to represent the
influence of a general or global social support factor. However, the individual provisions
also appear to reflect distinct aspects of support. We therefore conclude that the Social
Provisions Scale assesses both specific components of social support in addition to the
overall level of support available to the person” (Cutrona & Russell, 1987, pp.49-50).

Cutrona and Russell (1987) felt it was important to demonstrate that measures of
social support impact health independently of other influences like relevant personality or
social skill factors. Therefore, 242 college students completed multiple sets of measures

to evaluate the discriminant validity of the Social Provisions Scale (Cutrona & Russell,

52

1987). The social support measures completed include, the Social Support Questionnaire
(Sarason et al., 1983), the Index of Socially Supportive Behaviors (Banera, Sandler, &
Ramsay, 1981), a measure of attitudes toward use of social support (Eckenrode, 1983),
the Marlowe-Crowne Social Desirability Inventory (Crowne & Marlowe, 1964), the Beck
Depression Inventory (Beck et al., 1961), and the introversion-extraversion and
neuroticism scales from the Eysenck Personality Inventory (Eysenck & Eysenck, 1975).
The students also completed a stressful life events assessment specific to college
students. Results indicated that correlations were much higher between the Social
Provisions Scale and measures of social support (range = .352-.458) than between the
SP8 and measures of the other variables (range = -.278-.289). All correlations were
statistically significant except student “number of stressful events”. Although these zero—
order correlations were significant, Cutrona and Russell (1987) remained concerned that
the non-social support variables could in combination account for scores on the SPS.
Therefore, they used a hierarchical multiple regression analysis to examine this issue.
The variables, measures of social desirability, depression, introversion-extraversion,
neuroticism, and stress were entered first and accounted for 14.3% of the variance in
social provisions scores, F (5,236) = 7.57, p< .001 (Cutrona & Russell, 1987). Once the
influence these factors exercised over total social provision scores had been statistically
controlled, the social support measures were entered into the equation. The support
measures accounted for an additional 18.1% of the variation in the social provision
scores, F (4,222) = 14.88, p< .001. Therefore, measures of social support are more
closely related to scores on the Social Provisions Scale than the other relevant variables

(Cutrona & Russell, 1987). Cutrona and Russell (1987) summarize by stating,

53

“the evidence from this study clearly supports the discriminant validity of the

Social Provisions Scale. Although the measure does appear to be related to

measures of social desirability, introversion-extraversion, and neuroticism, our

results indicate that the measure assesses a construct that is distinct from these
latter measures. Most importantly, however, the Social Provisions Scale appears
to add to the explanation of psychological distress over and above the influence of

these related variables” (p.52).

Several studies using the Social Provisions Scale have been done since the 1987
research report on the scales’ validity and reliability. Research has been conducted with
various groups related to the perceptions and ratings of social support using the Social
Provisions Scale. Study results in one group of 115 pregnant adolescent girls, and the
adults who know them well, showed a moderate level of agreement between adolescent
and informant support ratings. However, significant predictors of post-partum depression
scores came only from the adult informant ratings. Cutrona (1989) states that, “the
ability of informants’ ratings of social support to predict the adjustment of the
adolescents to a major life stress was viewed as evidence that the commonly found link
between social support and mental health reflects more than self-report biases” (p. 723).
More recently, two other studies used the Social Provisions Scale. They included, 1) the
test of a process model in relation to social support, stress and depressive symptoms
among the elderly (301 adults 65 years or over) and, 2) perceived parental social support
and academic achievement in 418 undergraduates (Russell & Cutrona, 1991, Cutrona, et
al., 1994). Although in different settings, both studies revealed that social support lead to

a positive outcome or prevented a negative component; deficient social support lead

54

directly and indirectly to consequent depression in the elderly, and perceived parental
social support (reassurance of worth) of students related significantly to objectively
assess academic performance. Finally, social support and its relation to immune function
in the spouses of cancer patients have also been assessed using the Social Provisions
Scale. Of the 24 spouses who participated in the study, there was evidence of greater
immunocompetence on two of three dynamic measures in those who reported high levels
of social support (Baron, et al., 1990).

The Derogatis Affects Balance Scale is a measure of mood or affect, and provides
a profile of four positive (joy, contentment, vigor, affection) and four negative (anxiety,
depression, guilt, hostility) affects plus five global measures (See Table 1). There are
twenty adjectives, which describe both the negative and the positive, affect dimensions:
forty in total. A five-point Likert scale measures each item ranging from 0 = “Not-at-all”
to 4 = “Extremely” (Derogatis, 1996, p.4). As well, the five global scores provide
summary measures of affective status at a higher order, and comprise the following: the
Positive Total Score (PT OT), the Negative Total Score (NT OT), the Affects Balance
Index (AB1), the Affects Expressiveness Index (AE1), and the Positive Affects Ratio
(PAR) (Derogatis, 1996). Table 2 provides a summary of the global scores.

This 40-item questionnaire is written at an eighth grade reading level and takes
approximately five minutes to complete. Derogatis (1996) asserts that the DABS can be
used repeatedly over time to monitor affective status, and that “practice effects which
could conceivably bias repeated administrations appear to be absent” (p. 11). Scoring for
the DABS begins with the 8 primary affects dimensions. Five specific item scores within

each dimension are summed to arrive at the raw score; four dimensions are positive and

55

four are negative. A DABS Score/Profile Form is available to simplify this process and
can be used to plot the current affective status. For the global scores, first the PT OT and
NTOT are calculated by adding the sums of the four positive affects and the four negative
affects respectively. To provide the Affects Balance Index, the NT OT is subtracted from
the PTOT and this number is divided by the constant 20 (i.e. PTOT - NT OT /20 = ABI).
To provide the Affects Expressiveness Index, the PTOT and the NTOT are added
together regardless of valence. To provide the Positive Affects Ratio, The PTOT is
divided by the AEI (i.e. PTOT/ AEI = PAR) (Derogatis, 1996).

Table I — DABS Primary Affects Dimensions

 

 

 

 

 

POSITIVE AFFECT S DIMENSIONS DEFINITION
Joy A core dimension of positive affectivity, a
central facet of the emotional feeling state
of happiness
Contentment A core aspect of positive affectivity;
expresses a cognitive component of self-
satisfaction
Vigor The action component of positive
affectivity, reflecting an enabling energy
source
Affection Refers to the individual’s capacity to

engage in positive emotional
correspondence with others

 

NEGATIVE AFFECTS DIMENSIONS DEFINITION

 

Anxiety A core component of negative affectivity
with origins in the fundamental
mechanisms of “tight-flight”

 

 

Depression A core component of negative affectivity
characterized by sadness, apathy, dejection
and dysmhoria
Guilt A complex affective state based up the

perception/ belief that he/she has failed to
adequately assume significant
responsibilities

 

 

Hostility An affect state with its origins in the fight-
flight system. Perceived events (threats,
challenges) evoke this anger state

 

 

56

 

Norms have been developed for the DABS and include a community population

norm based on 480 community residents, an inpatient depression norm based on 339

hospitalized depressed patients, and an asthmatic medical outpatient norm based on 100

asthmatic outpatients (Derogatis, 1996). Gender-keyed norms have not been established

because even though slight gender differences have been realized, they are deemed

“clinically insignificant from a magnitude of effect perspective” (Derogatis, 1996, p. 13).

Table 2 - DABS Global Indices

 

 

 

 

 

 

 

DABS Global Definition Interpretation
PTOT Z All Positive Items Primary DABS measure of
(i.e., 20 + item scores positive affectivity
NTOT Z All Negative Items Primary DABS measure of
(i.e., 20 — scores) negative affectivity
ABI (PT OT — NTOT) /20 Principal DABS measure of
affects balance
AEI Z (PT OT + NT OT) Measure of affective
expressiveness or intensity
PAR PTOT / AEI Proportion of total affective
expression due to positive
emotions

 

 

 

As with the DISF/DISF-SR, this instruments’ norms have been generated using

standardized scores known as area T-scores; this type of scoring has previously been

explained. The DABS area T-scores are identical to the DISF/DISF-SR T-scores (e. g. T-

score of 35 = 7m percentile, 60 = 84‘h percentile, & 70 = 98lh percentile).

To insure instrument precision, internal consistency and test-retest reliability is

often used with self-report inventories such as the DABS (Derogatis, 1996). Based on a

sample of 355 psychiatric patients, coefficients a ranged as follows, positive affects, .84-

.92; negative affects, .79-.85, which indicates item homogeneity. Test-retest samples are

smaller, but indicate temporal stability, as well. A sample of 16 breast cancer patients

57

 

were assessed one week apart, and test-retest coefficients for positive and negative affects
ranged from .80-.84, and .78-.82 respectively. Another sample comprised of two sets of
older adults was calculated for global scores only. The first sample included 21 healthy
adults over 60 years and they were tested 2 months apart; scores ranged from .70 for the
AEI to .87 for the ABI. Thirteen patients suffering from Alzheimer’s type dementia were
tested one month apart with test-retest coefficients ranging from .40 for AEI to .71 for
NTOT & PAR. These expressed coefficients indicate acceptable test-retest reliability.
Construct validation for the DABS was accomplished at two discrete levels of
structure: the eight primary affects dimensions and the constructs of positive and negative
affectivity. DABS scores from 355 psychiatric inpatients were examined using principal
components analysis with an orthogonal varimax rotation (Derogatis, 1996). Of the eight
DABS dimensions, three factors reflected positive affects and three reflected negative
affects. These six accounted for nearly 70% of the variance in the matrix. A combined
joy/contentment dimension, an affection dimension, and a vigor dimension reflected the
positive affects, while a combined depression/guilt factor, an anxiety, and a hostility
factor reflected the negative affects. A perfect eight-factor structure was not attained,
however, the analysis did confirm a majority of the constructs (Derogatis, 1996).
Verification of the positive and negative affectivity factors was also performed using
principal components analysis with orthogonal varimax rotation; two principal
components emerged which accounted for 72.2% of the variance (Derogatis, 1996).
Practical utility of an instrument is verified through its predictive validity.
Although the DABS has many applications as a primary outcomes measure, the studies

reflected in this paper will relate to cancer populations and sexuality research. An early

58

study using the DABS investigated cancer morbidity and mortality and the role
psychological factors played (Derogatis, et al., 1979). Statistically significant results
indicated that the DABS “negative” affect measures were able to discriminate “long”
from “short” survivors. In a related study with twenty-six testicular cancer patients, the
DABS was used along with other predictors to evaluate 19 long-term survivors (over
seven years) and seven short—terrn survivors (dead within the first year). This analysis
using the DABS disclosed significantly higher levels of anxiety, hostility and depression
in the long term compared to the short term survivors (Edwards, DiClemente, & Samuels,
1985). These investigators postulated that high negative, rather than positive, affectivity,
indicated a successful manner of coping relative to the cancer and its treatment.

In a seven-year follow-up study with first recurrent breast cancer patients, the
DABS joy scale, along with other measures, was able to significantly predict length of
survival using a Cox proportional hazards model (Levy, Lee, Bagley & Lippman, 1988).
Generally, using other prediction methods, the investigators also found that positive
mood states were associated with longer survival, and determined that these states
represented resilience or hardiness to some extent (Levy, et al., 1988). Other
investigators who work with breast cancer patients have used the DABS’ measures to
predict compliance with chemotherapy regimens, and to compare agreement in affect
status between spouses after mastectomy and at one month (Ayers, et al., 1994;
Northouse & Swain, 1987). Ayers et al., (1994) found that high scores on dimensions
vigor, anxiety and depression predicted good compliance, while high DABS scores on
dimensions guilt and hostility predicted poor compliance. Northouse and Swain (1987)

used the DABS with breast cancer patients and their spouses to reveal agreement in

59

affects states; both spouse and patient showed a significant decrease in positive affects
right after surgery, but a return to normal was noted one month later.

The DABS has been used extensively in sexuality studies due to the fact that
it is a subtest of the Derogatis Sexual Functioning Inventory (DSFI) (Derogatis, 1975).
Studies of the affective profiles of men and women with common sexual dysfunctions
have found that, “individuals suffering from these disorders (i.e., premature ejaculation
and male erectile disorder in men; hypoactive sexual desire and female orgasmic disorder
in women) demonstrated affects balances a full standard deviation below the normative
mean” (Derogatis, 1996, p. 27). Compared to healthy controls, people with common
sexual dysfunctions exhibit negative affectivity that is elevated (p <. 001) and positive
affectivity that is suppressed (p < .001) (Derogatis, 1996). A related study using the
DABS examined women suffering from anorgasmia (female orgasmic disorder)
(Derogatis, Schmidt, Fagan, & Wise, 1989). Low desire, histrionic, psychiatric disorder,
and constitutional were identified as subtypes of this disorder through cluster analysis.
Findings revealed “constitutional” and “low desire” produced “modest positive affects
suppression, but were essentially clinically unremarkable” (Derogatis, 1996, p. 28).
Histrionic and psychiatric disorders demonstrated substantially negative affects balances,
and a significant loss of positive affectivity (Derogatis, et al., 1989).

In relation to healthy individuals, a study with approximately 250 men and
women in a community setting was undertaken, where quality of sexual functioning and
feelings of well being were assessed. The DISF was used to assess sexual functioning
and the DABS measured affectivity and well being. Significant correlations were

revealed between the DABS positive affects, including the PTOT and the ABI, and the

60

DISF domain and global scores. The only significant correlation revealed between the
DABS negative affects and the DISF was on the orgasm scale. The investigators
proposed that these findings support the fact that negative affectivity is less sensitive than
positive affectivity as an indicator of well being and functional status in healthy
individuals.

Data Analysis

Summary statistics will describe the sample.

Research question 1. Multiple paired samples t test adjusted by the Bonferroni
technique tested change in sexual function within the two treatment groups between three
points in time: pretreatment, at two months and at four months into treatment.
Independent samples I test was used to test change in sexual function between the two
treatment groups at the aforementioned three test points. Correlation between treatment
and lung cancer cell type was analyzed using chi-square test for independence of two
classifications.

Research question 2 & 3. Multiple linear stepwise regression determined the
influence of age and gender on sexual functioning. This measurement used data obtained
pretreatment, at two and four months into treatment.

Research question 4 & 5. Multiple linear stepwise regression determined the
influence of mood status and social support on sexual functioning. This measurement

used data obtained pretreatment, at two and four months into treatment.

61

CHAPTER FOUR
Results

Between June of 2000 and February of 2002, surveys from 59 of 84 eligible
subjects were received. Those twenty-five subjects who chose not to participate did so
for various reasons and wrote comments like, “I’m not interested”, “I decided not to do
it”, “This isn’t for me”. Seven chose not to participate because they were not
comfortable with the questions or because they didn’t want to answer the sexuality
questions. Seven non-responders sent back the forms with no note of explanation, eight
said they just didn’t want to participate, and three others became too weak to complete
the surveys after they said they wanted to participate.

Subjects are primarily from the southern United States, (N = 53), and additional
subjects are from across the country, (N = 6). As would be expected in a lung cancer
cohort, approximately 78 percent have non-small cell lung cancer, while 22 percent have
a diagnosis of small cell lung cancer. Ninety-three percent have pathology confirmed
lung cancer, while the other seven percent were confirmed by a nurse or by the patient
themselves; three of the patients accrued over the Internet were unable to obtain their
pathology reports. In the non-small cell category, there are more subjects with stage III
and IV disease (70 percent) than with stage I and II (30 percent) (see Table 3). Of those
subjects with small cell lung cancer, 46 percent have limited disease, while 54 percent
have extensive disease. The 59 patients are, however, quite evenly distributed with
regard to which treatment they were given; 39 percent received chemotherapy only and
61 percent received chemotherapy and radiation therapy. All are fully ambulatory,

whether or not they have symptoms; 44 percent are unable to work but care for most

62

personal needs, and 56 percent are able to carry on normal activity (see Table 3).

Table 3 Clinical Characteristics of Sample

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Characteristics Number Percentage
Cancer Diagn_osis
Non-Small Cell Lung Cancer (NSCLC) 46 78
Small Cell Lung Cancer (SCLC) 13 22
Stage of Disease
NSCLC
Stage I 2 4
Stage II 12 26
Stage III 9 20
Stage IV 23 50
SCLC
Limited 6 46
Extensive 7 54
Treatment Status
Chemotherapy Only 23 39
Chemotherapy/Radiation Therapy 36 61
Kamofsky Performance Status
Normal Activity (90) Normal activity 2 3
(80) Normal activity with effort 24 41
(70) Unable to carry on normal activity 32 54
(60) Requires occasional assistance 1 2

 

Karnofsky (1949)

Of the 59 subjects, eight completed the surveys one time only, and subsequently

died of their disease or had complications before the two-month test point. Fifty-one

individuals completed the surveys at the first and second test points, however two of the

subjects’ surveys were lost in the mail (the investigator never received the surveys) at the

two-month test point, and one subject lost his second social support survey.

Consequently, only 48 surveys could be evaluated at the second test point. Forty-one

subjects completed the surveys at the third test point. Of the remaining six of 12 subjects

who did not complete all three surveys, two died from their disease, two contracted brain

63

 

metastasis, and the other two chose not to continue due to their poor clinical status or
other personal reasons. Overall, participation is favorable for a study of this kind, and
excluding those who died, 69 percent were able and willing to continue in the study for
the four-month period. Many subjects were extremely enthusiastic and verbalized
pleasure at being able to help future individuals with lung cancer cope more effectively.
Several actually contacted the investigator if they did not receive their surveys at the
assigned date, and many wrote thank you notes for being asked to participate.

The range of time between the start of treatment (chemotherapy only or
chemotherapy and radiation therapy) and completion of survey number one varies
between 20 days before treatment start to 28 days after treatment start. The mean number
of days between treatment start and survey start 1813 days; the standard deviation (SD)
is 7.55. Of those patients who started the survey before treatment began, the mean
number of days is 10 days, and the standard deviation is 8.34. An attempt was made to
begin subjects on the study as close to treatment start as possible so their pre-treatment
sexual function could be measured accurately and treatment would not interfere with
either their actual sexual function or their perceptions of how well they were functioning.

Data Analysis

The sample is predominately white, married, with a high school or less education,
and from a lower-middle class group (53% earned less than $30,000). There are slightly
more females than males, 54 percent and 46 percent respectively, and they range in age
from 28 years to 83 years, with a mean of 60.6 years and a SD. of 11.4 (see Table 4).
Ethnic background reveals only 8.5% non-whites. Seventy-five percent of the subject

population is married, which possibly provides an advantage for a more normal sexual

Table 4 Demographic Characteristics of Sample

Race
White
. 'c
African American
American Indian

Marital Status
Married

Di

Widowed

Sin

Education

Less thanI-Ii School

Hi School Graduate

Some Colle

Colle Graduate
work

t Status
10 Full Time
10 Part Time
Not 10
Retired

F Income
Under $40,000
$40 GOO-$70,000
Over $70 000
Unknown

A

28-39
40-49
50-59
60-69
70-79
80-89

Gender
Female
Male

'cs

65

Number

5

4

Percen

92

3
3
2

75
10
10
5

C

 

function than for those without partners. Fifty percent of the subjects are retired.
Slightly more than 33% have at least 2 years of college or more.

The majority of patients experienced problems with sexual functioning at all three
test points. According to the Derogatis Interview for Sexual Function, Self Report
(DISF-SR), all but three of the subjects (95%) performed below the norm for sexual
function (below the 50‘h percentile) at the first test point (see Table 5). At the second test
point one subject who had functioned below the norm at time one, scored above the 50‘h
percentile at time two, but then reverted to below the norm at the third test point. Two of
the subjects (3%) functioned above the 50th percentile at all three test points.

At each of the three survey test points, the subjects tended to report below the
norm on the Affects Balance Index (mood status): time one = 65% below the 50th
percentile, time two = 75% below the 50th percentile, and time three = 62% below the
50th percentile (see Table 6). The ABI score range is from 25 to 80. However, they
tended to perceive high social support with generally higher scores at each test point (see
Table 7).

Research Question 1. When adjusted for pre-treatment level of sexual
functioning, are there significant differences (alpha = .05) in sexual function within and
between the two treatment groups at 2 months and 4 months into treatment?

The Bonferroni technique, based on Students’ t statistic was used to analyze the
change in sexual function within the two treatment groups between three points in time:
before treatment (chemotherapy only or chemotherapy & radiation therapy) began and at
month two and four after treatment had started. The Bonferroni technique is used when

constructing the confidence intervals. In order to construct a 95% joint confidence

66

interval of the paired difference among the three test points, a 99% individual confidence
interval is created for each pair. Each pair consists of the following: pair 1 = raw data
DISF-SR total score between time one and time two, pair 2 = raw data DISF-SR total
score between time two and time three, pair 3 = raw data DISF total score between time
one and time three (See Table 8).

Sexual function (DISF raw data score) decreases after treatment with
chemotherapy or chemotherapy and radiation therapy, particularly between time one and
time two of survey completion (mean 4.35 points), and between time one and time three
of survey completion (mean 3.10 points). There is very little difference in the score
between test point two and test point three (mean .05 points). None of the sexual
function score decreases are statistically significant at the level a = 0.05 jointly
between any two time points.

Before analysis of change in sexual function between the two treatment groups
was performed, the chi-square test for the independence of two classifications was done
to ascertain the relationship between cancer treatment (chemotherapy only and
chemotherapy and radiation therapy) and cancer type (small cell and non small cell lung
cancer). For the .patients with non-small cell lung cancer, 72% received chemotherapy
and radiation therapy treatment, while only 23% of patients with small cell lung cancer
received said treatment. This indicates a clear relationship between the administration of
the two different treatments and the cancer types (P = 0.001 by Pearson Chi-square test)

(See Table 9).

-67-

 

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Table 6- Statistical Measures for Affects Balance Index T-score

 

 

 

Group Mean Median Mode Range Variance Std Deviation
Time 1 (N=59) 46.42 45.00 45 60 207.32 14.40
Time 2 (N=49) 43.08 43.00 36* 58 190.45 13.80
Time 3 (N=41) 45.46 43.00 20* 58 262.20 16.19

 

 

 

 

 

 

 

 

* Multiple modes exist. The smallest value is shown.

Table 7-Statistical Measures for Social Support Total Raw Score

 

 

 

Group Mean Median Mode Range Variance Std Deviation
Time 1 (N=59) 79.88 81.00 70 32 88.59 9.41
Time 2 (N=48) 78.23 79.50 71* 62 157.46 12.55
Time 3 (N=39) 78.87 79.00 72* 46 123.85 11.13

 

 

 

 

 

 

 

 

* Multiple modes exist. The smallest value is shown.

Table 8 -— Joint 95% Confidence Intervals of Paired Difference at Any Two Time

Points for DISF Raw Data Scores

 

 

 

 

N Mean Std. Lower Upper

Deviation
Pair 1 RAWl & RAW2 49 4.35 16.790 -2.09 10.78
Pair 2 RAW2 & RAW3 39 .05 13.268 -5.71 5.81
Pair 3 RAWl & RAW3 41 3.10 16.441 -3.85 10.04

 

 

 

 

 

RAW = DISF total raw score

69

 

Table 9 - Treatment/Cancer type Crosstabulation

 

 

 

Lung Cancer Type
Non-Small Cell Small Cell Total
Treatment Chemo only 13 10 23
Chemo/RT 33 3 36
Total 46 13 59

 

 

 

 

Independent samples I test was used to analyze the change in sexual function
between the two treatment groups at three points in time. At test point one and two, the
chemotherapy and radiation therapy group scored higher on the DISF than the
chemotherapy only group (mean score, 9.99 and 4.13 more points respectively). At test
point three, the chemotherapy only group scored higher (mean score, 1.52 points higher).
Results indicate that there is no statistically significant difference in sexual functioning
between the two treatment groups at the three test points (See Table 10).

Table 10 — Test for Difference of Sexual Function Between Two Treatment
Grou s at Three Time Points

 

 

 

 

 

 

 

 

 

t df Sig. Mean Std. Error 95%Confidence
(2-tailed) Difference Difference Interval of the
Difference

Lower

Upper

RAWl Equal -1.450 57 .153 -9.99 6.888 -23.781
variances assumed 3.805

RAW2 Equal -.546 47 .588 -4.13 7.560 —l9.336
variances assumed 11.083

RAW3 Equal .204 39 .840 1.52 7.446 -13.542
variances assumed 16.578

 

RAW = DISF total raw score
In summary, there is no evidence that sexual function as measured by the

Derogatis Interview for Sexual Function, Self-Report is influenced by treatment over a

-70-

 

four-month period of time. There is also no significant difference in the sexual function
of the subjects according to type of treatment (chemotherapy only vs. chemotherapy and
radiation therapy)

Change over time was also investigated for mood status and social support using
the multiple paired t test. There were more missing values for social support than for
other variables primarily due to lost data via the mail and by the subjects themselves.

The Bonferroni technique is again used when constructing the confidence
intervals, and to analyze the change in mood status and social support within the two
treatment groups between three points in time. A 95% joint confidence interval of the
paired difference among the three test points is constructed, and a 99% individual
confidence interval created for each pair. Again, the pairs consist of the following: pair
1 = score between time one and time two, pair 2 = score between time two and
time three, pair 3 = score between time one and time three.

Regarding mood status, results show that right after treatment began, between
time one and two, the Affects Balance Index (ABI) (T -score) score decreases
significantly (P = .004). Between time one and three, the ABI also decreases, and
interestingly, between test points two and three there is a slight increase in the ABI T-
score. However, the decrease between time one and three and the increase between time
two and three are not significant at level a = 0.05 jointly (See Table 11). Overall, there
is no statistically significant change at level a = 0.05 jointly in the subjects’ perception of

social support between any of the three time frames (See Table 11).

-71-

Table 11 — Joint 95% Confidence Intervals of Paired Difference at Any Two Time
Points for Mood Status and Social Support

 

 

 

 

N Mean Std. Deviation Lower Upper
Pair 1 ABIl & AB12 (T -scores) 49 3.31 7.763 .33 6.28
Pair 2 AB12 & ABI3 (T -scores) 39 -.26 9.768 -4.50 3.98
Pair 3 ABI] & ABI3 (T -scores) 41 2.51 10.812 -2.05 7.08
Pair 1 SS] & SSZ (raw scores) 48 2.60 11.932 -2.02 7.23
Pair 2 $82 & S83 (raw scores) 37 1.95 6.060 -.76 4.66
Pair 3 881 & $83 (raw scores) 39 .74 7.465 -2.50 3.98

 

 

 

 

 

ABI = Affects Balance Index (Measure for Mood Status), T-score = Standardized Score
SS = Social Support

Research Questions 2 & 3. To what extent does age/gender explain variation in
level of sexual function for people with lung cancer?

To explore the extent to which age and gender affect sexual functioning,
three multiple linear regression models were constructed on sexual functioning
adjusted for treatment across the three test points. Regression analysis between the DISF
raw score of the dependent variable and each predictor variable [i.e. treatment, age,
gender, mood (affects balance index) & social support] was performed. (Mood and
social support will be reported later). ‘ At all three test points, age was a statistically
significant factor (P = .000, P = .000, P = .030 respectively) affecting sexual function. At
the first test point, for two patients with all characteristics the same but age, a patient 10
years younger will be expected to have about 11 more points on the total raw score of the
DISF (See Table 12). Gender was not statistically significant at time one or time three,

however, it was significant at time two at the level a = 0.05. Results at time two imply

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that males tend to have more normal sexual functioning than their female counterparts. If
other characteristics remain the same, male subjects will be expected to have about 15
more points on the total raw score of the DISF than females (See Table 12).

In summary, in relation to age, there is statistically significant evidence at level
a = 0.05 to support the fact that sexual function as explained by age varies for people
with lung cancer at all three test points. Younger people with lung cancer are expected to
score higher on sexual functioning than older people. In relation to gender, even though
the male with lung cancer tends to function better than the female, this difference didn’t
appear to be statistically significant at level a = 0.05 except at test point two.

Research Question 4. To what extent does mood status explain variation in level
of sexual function in people with lung cancer?

To explore the extent to which mood status affects sexual functioning,
the three multiple linear regression model is again used to regress mood status adjusted
for treatment, age, gender, and social support across the three test points. Regression
analysis between the DISF raw score of the dependent variable and each predictor
variable [i.e. treatment, age, gender, mood (affects balance index) & social support] was
performed. At test points one and two, mood status was found to have a significant
relationship to the subjects’ sexual function at level a = 0.05 (See Table 12). At test
point one, for two patients with all characteristics the same except mood status (ABI, T-
score), a subject with 10 more points on the ABI will be expected to yield about seven
more points on sexual functioning. At the third test point, there is no significant affect of

mood status on sexual functioning (See Table 12).

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Table 12 — Regression Analysis for Sexual Functioning

 

 

 

 

 

Coefficients Std. Error 1 statistic P Value
Time 1
(Constant) 30.25 31.968 .939 .352
Treatment 8.954 6.150 1.456 .151
Patient Age -1.078 .263 -4.096 .000
Gender 9.894 6.087 1.625 .110
ABI l T-score .691 .227 3.047 .004
SS 1 8.05 .355 .029 .822
Time 2
(Constant) 38.804 31.435 1.234 .224
Treatment -8.52 6.547 -.001 .999
Patient Age -1.068 .279 -3.830 .000
Gender 14.739 6.519 2.261 .029
ABI 2 T-score .936 .279 3.356 .002
SS 2 -5.13 .297 -.173 .864
Time 3
(Constant) 51.378 38.868 1.322 .195
Treatment -2.699 7.357 -.058 .716
Patient Age -.723 .329 -2.267 .030
Gender 9.776 7.888 1.239 .224
ABI 3 T-score .377 .311 1.213 .234
SS 3 -6.04 .460 -.013 .990

 

 

 

 

ABI = Affects Balance Index (Measure for Mood Status), T-score = Standardized Score

SS = Social Support

In summary, in relation to mood status, there is statistically significant evidence at

level a = 0.05 to support the fact that sexual function as explained by mood varies for

people with lung cancer at test points one and two. People with lung cancer who have a

higher score on the ABI are expected to score significantly higher on sexual functioning

at time one and time two. Although people also score higher on the ABI at the third test

point, this is not significant at level a = 0.05.

Research Question 5. To what extent does social support explain variation in

level of sexual function for people with lung cancer?

To answer this question, the same model is used to regress social support adjusted

 

for treatment, age, gender, and mood status. Level of social support is found to have no
significant affect on the lung cancer patient’s sexual function at all three test points (See
Table 12).

Although social support did not have a statistically significant relationship to
sexual function, it was logical that it may play some significant role relative to the
patient’s quality of life. One reasonable conjecture is that social support may influence
the subjects’ mood status, and indirectly affect sexual function. To examine this
supposition, the investigator regressed mood status (ABI) on social support and adjusted
for age, gender and treatment. The results clearly indicate that social support positively
affects the mood status significantly at level a = 0.05 at all three test points. Mainly,
subjects who feel that they are receiving a higher level of social support, tend to have
higher mood status, especially at the third test point (See Table 13).

In summary, in relation to social support, there is no statistically significant
evidence at level a = 0.05 to support the fact that sexual function as explained by social
support varies for people with lung cancer at any test point. However pe0ple with lung
cancer who have a higher level of social support do score significantly higher on the ABI

at level a = 0.05 at all three test points, particularly at the third test point.

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Table 13 — Regression Analysis for Mood Status Using ABI T-score

 

 

 

 

 

Coefficients Std. t statistic P Value
Error

Time 1
(Constant) 40.463 19.133 -.547 .587
Gender .81 1 3.651 .222 .825
Patient Age .219 .155 1.414 .163
Treatment -4.403 3.642 -1.209 .232
SS 1 .620 .196 3.165 .003
Time 2
(Constant) -14.244 17.040 -.836 .408
Gender -4.389 3.499 -1.254 .216
Patient Age .313 .145 2.159 .036
Treatment .524 3.577 .146 .884
SS 2 .557 .138 4.027 .000
Time 3
(Constant) -49. 143 19.714 -2.493 .018
Gender 1.436 4.344 .331 .743
Patient Age .233 .171 1.360 .183
Treatment 4.828 4.058 .012 .991
SS 3 1.000 .187 5.347 .000

 

 

 

 

ABI = Affects Balance Index (Measure for Mood Status), T-score = Standardized Score

SS = Social Support

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CHAPTER FIVE

Discussion and Implications

This is the first study of its kind with a distinct focus on the sexual function of
people with lung cancer. Overall, few investigators have studied the variables that
influence psychosocial adjustment in people with lung cancer. In addition, sexuality has
been relatively ignored in the lung cancer population. This is possibly due to the poor
outcome when diagnosed with lung cancer, or to the fact that sexuality is often equated
with cancers of the reproductive organs (Ginsburg, et al., 1995; Ryan, 1996). This
longitudinal research has begun to identify factors that affect the sexual functioning in
lung cancer patients over time, and this information will be able to be applied to future
research with these deserving individuals.

It has been previously noted that sexual function frequently declines in people
with cancer, especially as they experience treatment (Alfonso, Cohen, Levin, & Simon,
1997; Burbie, 1992; Schover, et al., 1996). Although the findings from this study did not
present significant data to confirm that sexual functioning in lung cancer patients would
be worse over time due to treatment, their sexual functioning did worsen somewhat as
they went through either chemotherapy alone, or chemotherapy and radiation therapy.
The majority of subjects entered the study with abnormal sexual functioning according to
their DISF-SR scores, which upholds findings from Ginsburg et a1. (1995) whereby they
report that several of their subjects (48%), who were being treated, experienced loss of
libido even before the diagnosis of lung cancer. Clinically, if the therapist is aware that
sexual functioning may be decreased in this population even before treatment begins,

they can address it with the person and normalize possible feelings of inadequacy. The

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patient can be informed that they may have already become weakened and debilitated by
their lung cancer and this can inhibit sexual activity. After the cancer diagnosis, but
before treatment begins, sexual desire may decrease because of anxiety about survival.
These anxious feelings can overpower either the patient or partner and lead to an
emotional crisis. Therapists can provide encouragement by explaining that tumor
response to chemotherapy and radiation therapy will often take away symptoms and
improve physical performance. Bernard and Gantz (1991) acknowledge that treatment
can play a helpful role in the ability to adjust to a cancer diagnosis. Even the fact of
discussing sexuality, an important aspect of quality of life, may give the person with lung
cancer hope and increase their sense of well-being.

In this study, there is a significant correlation between treatment type and type of
lung cancer at P = 0.001. More patients with non-small cell lung cancer (72%) are -
treated with chemotherapy and radiation therapy than with chemotherapy alone. Only
23% of patients with small cell lung cancer received both chemotherapy and radiation
therapy which is usually because fewer of these patients present with limited disease
where this is the treatment of choice. This is the usual treatment pattern for both types of
lung cancers according to Wozniak and Kraut (2001). This data signifies that the study
population results were probably not biased because of treatment out of the ordinary.
Even though the treatment correlated with the cancer type, there was no statistical
difference between treatment groups (chemotherapy only vs. chemotherapy and radiation
therapy) relative to DISF-SR raw scores. This is similar to Sama’s (1993b) research
where she revealed that symptom distress (sexual activity decreased for 38% of the

women) was not significantly different in relation to treatment status or to type of lung

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cancer. This is indicative of the fact that both non-small cell and small cell lung cancer
patients, regardless of treatment with chemotherapy alone or with radiation and
chemotherapy, have similar responses in relation to sexual functioning over time.

Age clearly was a significant factor in relation to sexual function. It was found
that at all three test points, if the subject was younger, their sexual function was better.
Because the average age of the study population was about 60 years old, this data speaks
to the fact that people with lung cancer who are undergoing treatment are more likely to
have a decreased sexual function. Although reports in the literature remind us that a
decrease in sexual function and ability is often found with increased age, it must be
remembered that many older adults are still sexually active (Fransson & Widmark, 1996).
Richard (2001) explains that sexual feelings aren’t necessarily reserved for young people,
and she reports, on a sexuality survey conducted by the American Association of Retired
People (AARP), that 25% of seniors 75 years old and older enjoy sexual intercourse
about once per week. Because the person with lung cancer may be in an older age
group, does not preclude the need to address their sexual function with them and their
partner. Conversely, because the younger patient is more likely to be sexually active,
sexual function should be addressed with these people as well. At any age, people with
lung cancer must be appraised of the changes in their bodies due to the illness, told that
treatment can produce side effects that may interfere with sexual function, desire and
pleasure, and that self image can also affect the physical response to sex (Shell, 2001).
Since lung cancer and its treatment disrupt normal sexual activity, other expressive
behaviors can be encouraged. Although some patients may be trying to rationalize a way

to put aside their sexual function due to lack of interest or physical ability, mere

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suggestion of alternative methods of expressing love and care may be met with delight.
A gentle caress or massage, loving words or gestures, soft touching or even simply
holding hands can validate humanness. Not only older adults with lung cancer, but also
most of the people diagnosed with lung cancer, have a lower level of sexual function.
Therefore, further research is needed to ascertain this population’s sexuality information
needs, and the preferred method and setting for receiving this information.

According to the DISF-SR raw score, overall, males being treated for lung cancer
tend to experience a more normal level of sexual functioning than females, and this is
significant at the two month period. There was no significant relationship at pretreatment
or at the four month period. One can speculate that significance may be related to the
fact that, before treatment begins, females have not lost their hair, and neither have other
body changes occurred (e. g. weight loss, skin changes). At the four-month period,
women may have become used to the fact that these changes have occurred, and then
begun to adapt to a different body image. However, at the two-month test point, their
sexual functioning is significantly more affected than the males, and this may be due to
the shock of hair loss, weight loss, and potential skin changes, along with hot flashes,
decreased libido and vaginal atrophy. Conversely, because these women tend to be
around 60 years old, they may not be experiencing the hot flashes and vaginal atrophy
caused by chemotherapy’s effect on the ovaries which younger women experience.
These are aspects that investigators are not sure about because, as Susman (2001)
explains, research relative to female sexual dysfunction while undergoing chemotherapy
is generally 20 years behind that of men, thus speculation is more tentative. In addition,

statistical significance of age and gender relative to sexual functioning is logical given

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the fact that society values women who are young and beautiful more highly than the
older (and perhaps bald) woman (Shell, 1998). The older male (even when bald) is much
more socially accepted from a sexual or viral standpoint as evidenced by the older movie
star like Sean Connery being recently voted the most “handsome” or “sexy” man alive by
the Gentleman’s Quarterly magazine! Burbie and Polinsky (1992) comment that during
active treatment for cancer, there is an effect on sexual desire and response that includes, I
“. . .feeling sexually unattractive because of hair loss, loss of a body part, nausea, and

weight loss or gain” (p. 23). Manne ( 1998) adds to this opinion as she communicates that g

 

females with cancer are at higher risk to experience distress than males, as are the wives
of cancer patients at higher risk. Because so little is known about women and their
sexual function during cancer treatment, this study may provoke increased curiosity
relative to the sexuality needs of women with lung cancer, as well as the needs of both
sexes. This may spark the development of proper intervention at the appropriate point in
time.

Social support had no direct significant impact on the sexual functioning of lung
cancer patients at any test point, and this was somewhat surprising. As a result, further
investigation was conducted and it was found that social support did significantly impact
positively on mood status at all three test points, and particularly at the four month period
(test point three). This upholds results from several studies that examined the effect that
social support had on perception of psychological distress, psychosocial adjustment,
anxiety and depression (Irvine etal., 1991, Neuling & Winefield, 1988, Northouse et al.,
1995, Quinn et al., 1986, Roberts et al., 1994). Those subjects who reported a high level

of social support had decreased distress and depressive symptoms, and better

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psychosocial adjustment. Because this data supports a significant relationship between
mood status and sexual functioning, a higher level of social support appears to affect
sexual function, then, in an indirect manner.

Social support is concerned with “the nature of the interactions occurring in social
relationships”, and it refers to both situational and perceived support (Klemm, 1994, p.
1059). Although a spouse or other social network often proffers social support, it can F
also be provided by a therapist, which may permit a new and important added social

network. Whether in a group or on an individual basis, psychotherapeutic support gives

 

the patient the experience of caring and relatedness. Because social support was
significantly related to mood status throughout the study, therapists and other caregivers
can be alerted to the need for continued support or to the initiation of support resources
for newly diagnosed lung cancer patients. Speigel (1998) encourages the facilitation and
development of open communication between family members to share in problem
solving which reduces anxiety and depression among people with cancer. This study’s
results suggest that this support is needed before and during treatment.

From the Derogatis Affects Balance Scale, the Affects Balance Index (ABI) T-
score was used to evaluate overall mood status in an attempt to capture the most
significant changes relative to sexual dysfunction. This particular global index not only
measures negative affects, but measures positive affects too. Derogatis (1975b) states

that, “. . .it is not the absolute level of negative emotion that has predictive value in sexual

 

dysfunctions, but rather the balance between positive and negative emotional

experiences” (p. 5).

Over time, there is a significant decrease in mood status between time one

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and two, and although mood also decreased between time one and time three, there was
no significance found. Interestingly, mood status actually increased slightly between
time two and three, but again, not significantly. Conjecture may be that as people are
diagnosed with lung cancer, they immediately contemplate their demise and have little
hope and they plunge into despair. However, as treatment is introduced that has the
potential to prolong life, hope is resurrected, and help is afforded to adjust to the cancer
diagnosis (Bernhard & Ganz, 1991b).

One notable finding from this study was that mood status does affect sexual
function. The better the mood, the higher the patient tended to score on the DISF-SR and
this was significant at the first and second test points (pretreatment and at month two).
Because many patients report depression and anxiety when diagnosed with cancer, and
those with a more severe illness like lung cancer report even higher depression rates, the
therapist may be more alert to assess carefully for this symptom. In turn, if depression is
treated proactively with therapy and antidepressants, potential sexual dysfunction may be
reduced and patients can have a more satisfactory quality of life as they journey through
treatment. As an aside, due to the significance of this finding, there may be an indication
that an intervention may most appropriately be delivered at either or both of these times.
Albeit, Schover, et a1. (1987) found that there was no difference in outcome of counseling
with cancer couples in relation to timing—whether before, during or after cancer
treatment. Although this study sample may not be fully generalizable to the total
population of lung cancer patients, this reported response is not unlike other related
studies in the literature. The literature clearly advises us that mood status'impacts sexual

desire, and negative emotional states such as depression and despair may disrupt sexual

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activity, not only intimate encounters, but other aspects of sexual function (e.g. closeness,
touching, hand holding, caressing) as well (Burbie & Polinsky, 1992; Monga, 1995). A
depressed mood may preclude tender physical nurturing between patient and spouse or
partner at a time when it is perhaps most needed. Although sexuality is only one aspect
of the patients’ quality of life, when mood status is effectively addressed, many aspects of
the patients’ life may improve. I
Strengths and Limitations I

There are several strengths to this study. One prominent strength is that this is a

 

study to explore the sexual function of people with lung cancer without looking at other
aspects of quality of life. This study was not clouded with other psychosocial (e. g.
smoking behaviors, role activities like work, parenting responsibilities, financial issues,
etc.) and co-morbidity issues, consequently, more in depth information relative to sexual
function and what may impact sexual function was learned. Due to previous reports in
the literature, the variables of social support and mood status were relevant to the nature
of the study and have been shown to affect sexual function both directly and indirectly.
This is a longitudinal study that took place over a four-month period of time with
some of the patients still taking treatment. There are very few psychosocial longitudinal
studies with lung cancer patients, and most of the studies have been done on a one-time
basis or over one to three months (Cella et al., 1987; Ginsburg, et al., 1995; Houston &
Kendall, 1992; Klemm, 1994; Quinn et al., 1986; Sama, 1993; Schag, et al., 1994). A
study of this kind can begin to inform therapists and help them understand the time
course of changes in sexual function, mood status and social support, and the potential

impact that treatment, age, gender, mood

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status, and social support have on sexual function over time.

In this study, sexual function, mood status and social support were measured by
self-report questionnaires, and self-administered questionnaires are quite sensitive when
used to measure various sexuality parameters (Fransson & Widmark, 1996). Although
the DISF instrument used to assess sexual function is not cancer specific, there are few
instruments that are specific to cancer patients and none specific to those with lung
cancer. The Derogatis instrument has been used in other sexuality studies in the cancer
population and it is very brief, which tends to promote higher completion compliance by
the subject. Syrjala et al., (2000) report that most of the sexual function self-report
measures reviewed were flawed thereby limiting use in clinical trials across populations.
They also found that cancer patients tend not to answer sensitive questions or are too
tired to complete lengthy instruments (Syrjala et al., 2000). Conversely, when given the
opportunity and anonymity, people may be more truthful with sensitive issues like their
sexual function and activity. In this study, there were no DISF instruments with missing
data.

The DABS self-report survey was used because it had no somatic content
questions like “fatigue” or “appetite loss” for subjects to evaluate. This is unlike some of
the other instruments (e. g. the Beck Depression Inventory) where subjects are asked to
report on symptoms that can also be caused by the cancer itself, thereby possibly masking
a true depression (Manne, 1998).

Each of the self-report instruments that were used were very short and required

minimal patient time to complete (approximately 15 to 20 minutes). Therefore, patients

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were willing to participate in the study, and all surveys that were returned were complete
and without missing data.

All subjects except one were placed on the study within 24 days of beginning
treatment, and several were placed on study before treatment began. This decreases the
likelihood that perception of sexual function was biased by the treatment.

There are also various limitations to this study. This is not a randomized study

 

and it does not have a control group. However, this is an exploratory study done to

provide a familiarity with the topic of sexual function in lung cancer patients. Babbie

 

( 1992) explains the purposes for an exploratory study and they are: “(1) to satisfy the
researcher’s curiosity and desire for better understanding, (2) to test the feasibility of
undertaking a more careful study, and (3) to develop the methods to be employed in a
more careful study” (p. 90).

The study sample, while adequate with power to detect changes, is still small and
may not be fully generalizable to the total population of lung cancer patients, however,
there is no other sexuality study with which to compare these results. The study
population was primarily from one southern state, but a few came from several other
areas across the United States, which enhances generalizability.

Although there was almost an equal number of female to male subjects, the
recruitment of minority subjects was less than optimal. There were no known gay or
lesbian subjects. Participants included only two African Americans, two Hispanics, and
one American Indian, and all others were white and heterosexual. This was
disappointing since the main cancer center where subjects were accrued is in a large

Hispanic area. Several Hispanics that would have been potential subjects could not

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participate because they could not read and speak English; they were not approached.
Notably, then, the experiences of other cultures, races and sexual orientations are
not realized.

The number of subjects who participated in the study declined at each test point,
which is a limitation of all longitudinal studies of cancer patients. Problems were also
realized with the postal service, and with the loss of surveys by the subjects.

The personal nature of this study (sexual function) could add potential limitation

to these findings because responses may have been biased due to reluctance to report

 

sexual activity, as noted by other investigators (Catania, Gibson & Chitwood, 1990;
Schover etal., 1995). The standardized instrument that was used to measure sexual
function (DISF-SR) may not have been sensitive enough to capture particular sexual
issues of people with cancer, in particular, lung cancer. These nuances possibly could
have been realized by including a qualitative approach such as interview, but that was
beyond the scope of this study. As well, although the DISF instrument has been used
extensively with cancer patients, it does not have any questions relating to “intimacy”
within the relationship. It asks how satisfied the subject is with the present relationship,
but does little to realize factors other than the physical aspects of sexual function.

The Social Provisions Scale has not been normed in a cancer population except
for in relation to the immunocompetence in a small group of cancer patients. Other

scales may provide data that are significant with regard to social support’s influence on

sexual function.

There were variations in the method of administration of the instruments. Some

subjects were approached by the investigator in person, while others had only telephone

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and Internet communication. Those who were not approached in person may not have
felt as inclined to ask questions and could have misinterpreted parts of the instruments.
As well, they may have felt less invested in the study, although several of those subjects
contacted via phone and on the Internet wrote thank you notes for being asked to
participate.

There are several confounding variables that were not controlled for and they
include factors such as tumor stage, partner, previous sexual activity, other co morbid
diseases, smoking history, surgical resection of tumor, and certain medications that could
affect sexual function (e. g. antihypertensives, hormones, antidepressants, narcotics, etc.).
Patients who had had surgery for their lung cancer were fully recovered before beginning
chemotherapy or radiation therapy and most were taking pain medication either
intermittently or not at all. It would have been helpful to have at least a brief sexual
history from the subjects to ascertain their perception of sexual function before treatment
started.

Implications for Future Research

A psychotherapeutic approach for people who suffer with lung cancer can be
a powerful and important component of treatment which can help to reduce distress,
improve coping, and enhance interaction in relationships with family and with health care
professionals. One purpose of this exploratory study is not only to document that a
problem exists for the lung cancer population, but to use this data to design further
studies that include a spouse or partner, along with intervention at the most suitable point
in time. An example may be one of low sexual desire due to depression and side effects

of chemotherapy. The patient may be treated for depression with therapy and/ or

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medication and be told not to expect sexual desire to return immediately after a treatment
session. This may be the approach needed to reassure the patient and validate their
humanness.

As researchers learn more about the changes that take place in sexual function in
the lung cancer population over time, fears can be replaced by facts that explain potential
problems. The efficacy of a structured counseling program intervention such as sexual
rehabilitation counseling can be assessed through randomized, controlled studies.
Medical family therapists or other healthcare providers can intervene at different points in
time to provide patients and partners: information regarding the impact of treatment on
the phases of sexual functioning, permission to explore alternative sexual expression, and
teaching sensate focus exercises to structure noncoital foreplay. Patients can be taught
that there are ways to return to being sexually active by building on strengths (both
physical and emotional) that the person has retained and by constructing new ones.
Further research may also create intervention according to gender and age in the lung
cancer population. Although this study population was around 60 years of age, lung
cancer continues to include younger individuals, more women than men are
now inflicted with this disease on a yearly basis, and since 1987, lung cancer has
surpassed breast cancer as the leading cause of death and accounted for 25% of all female
cancer deaths in 2001 (Greenlee, et al., 2001). Clearly, more research to develop
empirically supported intervention can enrich our knowledge of which modes of
psychosocial interventions are most effective and in which group of patients.

Finally, the assessment of sexual functioning in people with lung cancer suffers

from a lack of reliable and valid instruments appropriate for this population. This

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quantitative study used a short reliable and valid questionnaire to assess sexual
functioning, but it was not specific to individuals with lung cancer. There is also a lack
of qualitative information for people with lung cancer concerning their sexual
functioning. Future studies could incorporate a qualitative section so patients and
partners have a means to communicate their concerns and needs using their own words.
Conclusion I
From an ecological perspective, the quality of life of the person with cancer and "

the quality of the environment are dependent on one another. There can be no ._._

 

differentiation between the well-being of the patient and family and the well-being of the
entire ecosystem, because parts and wholes are interdependent (Bubolz & Sontag, 1993).
Ecological values stem from virtues “that contribute to the ultimate good and to quality of
life and include: health versus sickness: education and learning versus ignorance; loving
and nurturing relationships versus those that are hateful and destructive; work that is
productive and has meaning versus that which is stultifying and unproductive, and work
environments that help create personal identity versus alienation...” (Bubolz & Sontag,
1993, p. 426.). Important components of health, love, nurturance, productivity, etc., are
the person’s sexuality and their perception of femininity and masculinity. When disease
and treatment compromise this aspect of quality of life, it is imperative to provide
increased social support and resources so the person who is ill can feel a sense of respect
and live with dignity.

All marriage and family therapists who work in the medical community as
medical family therapists, or those therapists who see cancer patients on a regular basis

should be aware of the importance of addressing issues of sexual functioning in this

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patient population. Marriage and family therapists who work in or in conjunction with a
medical environment are well located to assist a broad range of cancer patients and
partners who realize a problem associated with cancer, its treatment and their sexual
function. Even though sexual functioning is an important aspect of quality of life,
therapists often find it difficult to approach the subject. This dissertation highlights

sexual function for a particular group of people, those with lung cancer, because they

 

have been relatively ignored. and they deserve to have their life validated as well as all ‘

other people with cancer. Reiker (1996) reminds us that every ill person acquires a

 

‘spoiled identity’ and a critical illness like cancer touches every aspect of a person’s life.
She recounts that one survivor wrote, “The loss that accompanies illness begins in the
body, as pain does, then moves out until it affects the relationships connecting that body

to others” (Reiker, 1996, p. 18).

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APPENDIX A

Informed Consent

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INFORMED CONSENT
The Longitudinal Effects of Cancer Treatment on Sexuality in Individuals with Lung
Cancer

INVESTIGATOR: Judith A. Shell, RN, Pth, Michigan State University, 407-482-4374.
CO-INVESTIGATOR: Marsha Carolan, PhD, Michigan State University, 517-432-3327.

You have been asked to participate in a research study. This study is being
conducted by Judy Shell, RN, Pth, a medical family therapist and doctoral student at
Michigan State University. In order to decide whether or not you should agree to be part
of this research study, you should understand enough about its risks and benefits to make
a judgment. This process is called informed consent.

This consent form gives information about the research study that will be t" "
discussed with you. After an explanation of the study is given, you will be asked to sign

this form if you wish to participate.

 

 

PURPOSE OF STUDY
The purpose of this study is to evaluate sexual functioning and social support in

people undergoing treatment for lung cancer. Although many studies have been done
with patients who have other kinds of cancer, no studies have been done and no
information regarding sexuality in lung cancer patients exists. Approximately 90 patients

will participate in this study.

BENEFITS AND RISKS

There are no direct benefits to you for participating in this study. You may have
increased knowledge about your sexual functioning which may improve your quality of
life, and recognize that any concerns you may have about your sexual functioning are not
unusual. Other potential benefits of this study will affect future patients with lung cancer.
Increased knowledge may increase/improve quality of life for patients and enable health
care providers to address related issues with improved insight.

The possible risk to you may be psychological discomfort while answering the
Derogatis Interview for Sexual Functioning: Self Report, Affects Balance Scale, or the
Social Provisions Scale due to the private nature of questions regarding sexual behaviors,

your mood and affect, and your support systems.

OTHER INFORMATION
These questionnaires will be given to you three times; once at the time of your

diagnosis, once 2 months later, and one more time 4 months later. It will take you
approximately 30 minutes to fill them out each time. Because of the sensitive nature of
the Derogatis Interview for Sexual Functioning: self Report questionnaire, you will be
able to read it over before you make your decision to participate in this study.

Patient Initials

 

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If you are uncomfortable about answering any of the questions on the questionnaire, you
do not have to respond.

You understand that you will receive no payment for your participation in this
study. The investigator and/or delegated representatives may inspect your medical
records for informational purposes where appropriate and necessary. You have been
assured that your confidentiality will be preserved and that your name will not be
revealed in any reports or publications resulting from this study. Your confidentiality
will be further preserved because a code number will be used to identify you rather than
your name. Your name will not appear anywhere on the questionnaire.

Should you have any questions regarding your rights as a patient, you may call
the University Committee on Research Involving Human Subjects (UCRIHS)
representative, David E. Wright, PhD, at the following number, (517-355-2180). Should
you have any other questions regarding this study, you may call the principal
investigator, Judy Shell at 407-482-4374.

You have the right to refuse to participate in this research study (thereby refusing
to sign this consent form) if you so desire without any fear of additional treatment being
affected or withheld. In addition, you may refuse to continue to participate in this study at
any time after the start of the study without fear of prejudice to additional treatment.
Therefore, should you refuse to participate in this study, it will not affect any medical or
other type of treatment that is to be provided for you. You will be given a copy of this
consent form, and your signature indicates that you have volunteered to participate in the
study having read the information provided.

 

 

PATIENT’S/PARTICIPANT’S WITNESS’ SIGNATURE
SIGNATURE

 

DATE
INVESTIGATOR’S CERTIFICATE
I have fully explained to the patient the nature and purpose of the above described

study and the risks involved in its performance. I have answered and will answer all
questions to the best of my ability.

 

 

INVESTIGATOR’S SIGNATURE IN VESTIGATOR’S NAME
PRINT

DATE

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Patient Sociodemographic Form

APPENDIX B

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.. ‘..

PATIENT SOCIODEMOGRAPHIC INFORMATION

Patient Age (years)

 

Gender

 

Race/Ethnicity
American Indian/Alaska Native

 

Asian/Pacific Islander

 

 

Black (Non-Hispanic)
Hispanic

 

White (N on-Hispanic)

 

 

Other

 

Marital Status
Single

 

Married

 

Divorced/Separated

 

Widowed

 

Employment Status
Full-time (40 hours/wk. or more)

 

Part-time (less than 40 hours/wk.)

 

Not employed

 

Retired

 

Highest level of education completed
Grade School

 

High School/General Ed Degree

 

Associate Degree

 

Baccalaureate Degree

 

Masters Degree

 

Doctoral Degree

 

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10.

11.

12.

13.

Family Income
Under $ 10,000
$10,001-$20,000
$20,001-$30,000
$30,001-$40,000
$40,001-$50,000
$50,001-$60,000
$60,001-$70,000
$70,001-$80,000
$80,001-$90,000
$90,001-$100,000
Above $100,000

Presence of Brain Metastasis

Stage of Disease

Performance Status (Kamofsky)

Type of Lung Cancer

Type of Treatment

Treatment Start Date

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