Impact of Oral Cancer on

Quality o f L i f e
Jesus Amadeo Valdez, DDS, MAS, Michael T. Brennan, DDS, MHS*

KEYWORDS
 Oral cancer  Quality of life  Psychosocial impact  Physical impact
 Financial impact

KEY POINTS
 Quality of life is an abstract, subjective, and multidimensional conceptualization of a pa-
tient’s perception of self.
 The clinical manifestations of oral cancer and effects of treatment can lead to negative ef-
fects on the quality of life of the patient.
 Treatment of oral cancer has adverse effects on esthetics, speech, voice, and swallowing.
 Oral cancer treatment might require surgery that may result in altered facial appearance,
which can cause social isolation and psychological distress.
 Treatment costs, work absences, medication prices, and other miscellaneous expenses
can severely burden patients with oral cancer, especially patients with limited financial
resources.

ORAL CANCER AND QUALITY OF LIFE

Quality of life is an abstract, subjective, and multidimensional concept that entails pa-
tient’s self-perception in society. The World Health Organization defines quality of life
as an individual’s perception of his or her position in life in the context of the culture
and value systems in which the patient lives and in relation to his or her goals, expec-
tations, standards, and concerns.1
The clinical manifestations of oral cancer and effects of treatment can lead to nega-
tive effects on the quality of life of the patient. Patients may experience significant
dysfunction in talking, swallowing, with alteration of cosmetic appearance, and sen-
sory impairment, as well as chronic pain. All these factors when compounded lead
to poor mental health.2–5

Disclosure Statement: We have no relationship with any commercial company that has direct
financial interest in the subject matter or material discussed in this article.
Department of Oral Medicine, Carolinas Healthcare System, Carolinas Medical Center, PO
Box 32861, Charlotte, NC 28232, USA
* Corresponding author.
E-mail address: mike.brennan@carolinashealthcare.org

Dent Clin N Am 62 (2018) 143–154

https://doi.org/10.1016/j.cden.2017.09.001 dental.theclinics.com
0011-8532/18/ª 2017 Elsevier Inc. All rights reserved.
144 Valdez & Brennan

QUALITY OF LIFE INSTRUMENTS

Substantial effort has been made to create cancer-specific instruments to measure

quality of life (Table 1). These questionnaires or instruments are intended to reflect
the difference between one’s perceived reality and one’s expectation or wishes.6
Measuring these variances requires a complex health evaluation that includes phys-
ical, functional, physiologic, social, and spiritual domains. Some of the instruments
focus on a specific symptom or functional aspect of the patient, and others are
more global quality of life tools.7
The University of Washington Quality of Life Questionnaire is among the most
frequent tools used to assess quality of life. A composite score is determined by add-
ing together 9 domains and dividing by 9 to give a scale from 0 (for poor health) to 100
(good health). The 9 specific areas related to patients with head and neck cancer are
pain, appearance, activity, recreation-entertainment, employment, speech, chewing,
swallowing, and shoulder disability.8
The European Organization for Research and Treatment of Cancer Quality of Life
Questionnaire aims to measure patients’ health-related quality of life in oncology clin-
ical trials, other well-designed research studies, and clinical practice. This instrument
is specific to the type of cancer. This questionnaire consists of 35 questions about the
symptoms and side effects of treatment. Eighteen questions address symptoms such
as pain, swallowing, taste, and appearance. The next 12 questions measure functions
such as eating, talking, social contact, and sexuality. Five more items are binary ques-
tions concerning analgesia, supplemental feeding, and weight.9

Table 1
Quality of life instruments

Liverpool Oral
UW-QOL EORTC QLQ-H&N35 Rehabilitation
Number of 15 35 25
Questions
Scale Likert (5 point) Likert (4 point) Likert (4 point)
Scoring  Range from 0 to 100.  Range from 1 to 4.  Range from 1 to 4
 Composite score is  Composite score is a  Composite score is
calculated by taking linear transformation the simple mean of
the averaging each of the sum of individual individual item scores
domain score. item scores
Measures  Pain  Pain  Chewing
 Appearance  Swallowing  Swallowing
 Activity  Senses  Oral Dryness
 Recreation  Speech  Speech
 Swallowing  Social Eating  Drooling
 Chewing  Social Contact  Appearance
 Speech  Sexuality  Social Life
 Shoulder Involvement  Food Choice
 Taste  Denture Issues
 Saliva
 Mood
 Anxiety
 Overall QOL

Abbreviations: EORTC, European Organization for Research and Treatment of Cancer.

Data from Refs.8–10
 Impact of Oral Cancer on Quality of Life 145

The Liverpool Oral Rehabilitation Questionnaire contains 25 items about oral func-
tion and denture satisfaction. The first 12 items assess general issues related to oral
function and the remaining 13 items deal about dentures or denture satisfaction.
Each item is rated on a 1 to 4 Likert scale ranging from never (1) to always (4).10
These examples of quality of life measures may be used in a clinical setting to eval-
uate for areas of need in patient management. Oral cancer has many physical, psy-
chosocial, and financial implications, all of which can have large effects on the
patients’ quality of life.4,5 Awareness of these impacts and their complexity can be
used by health care providers to ensure patient access to information and resources.6

PHYSICAL IMPACT

Treatment of oral cancer has adverse effects on the face, speech, voice, and swallow-
ing. Impairments can be attributed to the effects of the tumor itself or procedures
before or during cancer treatment such as tracheostomy, pain from mucositis, xero-
stomia, amputation of oral structures, or fibrosis due to radiation treatment.11 Some
of these impairments can present before treatment is initiated, some are most trouble-
some during and immediately after treatment, and some can persist and worsen for
years after treatment. Self-esteem can be affected when normal facial appearance
or communication ability is altered by oral cancer treatment.12
Esthetics Impact
Oral cancer treatment may include surgery that involves removing large areas of facial
features. Altered facial appearance can cause social isolation and psychological
distress. Reconstructive surgery may be necessary to help the patient recover facial
features and functions. Bone or tissue may be harvested from other body sites to
replace lost tissue, including the labial mucosa, tongue, palate, or mandible. A maxil-
lofacial prosthodontist can often fabricate dental and facial prostheses to diminish the
effects of the surgical resection (Figs. 1 and 2).13,14
Speech Impact
Speech is usually affected by chemotherapy and radiation therapy. Typically, the
severity is mild to moderate and is related primarily to treatment of the tongue, teeth,
palate, and lips. Patients with oral cancer may have trouble articulating speech rapidly

Fig. 1. Maxillary obturator. (Courtesy of Dr Robert Schortz, Carolinas HealthCare System,

Charlotte, NC.)
146 Valdez & Brennan

Fig. 2. Prosthesis used for restoring anatomy after a partial or complete removal of the
nose. (Courtesy of Dr Robert Schortz, Carolinas HealthCare System, Charlotte, NC.)

when experiencing symptoms such as dry mouth or pain due to mucositis.15 A speech
pathologist must evaluate the patient before, during, and after cancer treatment. The
goal is to return the patient to the highest satisfactory function in the shortest amount
of time. Some speech problems may not require any intervention and simply resolve
over time. More complex situations require therapy that depends on the severity of the
issues. Treatment of these conditions can include muscle-strengthening exercises,
controlled breathing, and management of nervousness when talking.14

Voice Impact
Voice quality in patients with oral cancer can be severely affected by different factors,
including (1) impairment of vocal fold mobility, (2) altered tongue anatomy, and (3)
chronic laryngeal edema. As a result, the patient’s voice can become strained,
wheezy, or harsh.16 Patients with xerostomia may experience voice changes resulting
from dryness of the laryngeal mucosa. Resonance can be altered when patients un-
dergo changes in the palatal anatomy or edema in the oropharynx.17 Speech pathol-
ogists are an important resource to patients with these conditions. They can instruct
the patient on modified voice rest exercises during treatment and, if the patient has a
tracheostomy, the speech pathologist can recommend the use of a 1-way speaking
valve and provide training in its use. For hypernasality, a nose clip can be beneficial.
The maxillofacial prosthodontist and speech pathologist collaborate closely for
long-term management of patients with voice impairments.14

Swallowing Impact
Dysphagia is a common result of oral cancer treatment. Swallowing is directly affected
by the inability to properly masticate due to mandibular resection, dental extractions,
impairment of the mobility of the tongue, or scarring of the labial mucosa.18 Patients
with oral cancer have a higher risk of aspirating while eating due to the impact on ef-
ficiency and safety of swallowing. Swallowing function can also be affected years after
radiation therapy. Tissue fibrosis ultimately can produce some degree of dysfunc-
tion.19 To improve swallowing, a specialist may teach the patient different postures
(head turn or chin tuck), maneuvers (breath hold before swallow), diet modifications
(thickened fluids), or tongue exercises (tongue retraction). Alcohol abuse withdrawal
syndrome can result in behaviors such as anxiety, irritability, and decreased cognition,
 Impact of Oral Cancer on Quality of Life 147

which can alter the success of the swallowing interventions provided by the speech
pathologist. In patients with extensive surgical involvement, an intraoral prosthetic
appliance can have be a major improvement on the efficiency or safety or the oropha-
ryngeal swallow. These prosthetics are designed individually, usually by a maxillofacial
prosthodontist and a speech-language pathologist.13,14

PSYCHOSOCIAL IMPACT

Oral cancer represents a psychosocial challenge not only for patients but also for their
family and diagnosing provider (Fig. 3). Not all patients are affected to the same de-
gree; therefore, it is fundamental to have a complete understanding of the range of
psychological and social obstacles patients may experience.20–25 Government institu-
tions, nonprofit organizations, and internet forums are some of the available resources
to assist patients with attaining balance in their lives at diagnosis, during treatment,
and through survivorship.21

Impact on the Patient

The diagnosis of oral cancer often evokes a shock reaction in the patient and, often,
they will seek an explanation to amend feelings of guilt for falling ill to this disease.23
Usually, patients with cancer will experience progressive fears, such as fear of the un-
known; death anxiety; fear of loneliness; fear of change; fear of loss of control; fear of
regression; and, particularly, the fear of loss of identity.22 The patient may approach
these fears with an array of varying defense measures that they may use either
constructively or destructively during the course of their disease.13,21
The most common defense measure used by patients with cancer is denial. Denial
is an unconscious defense that prevents the patient from acknowledging an unpleas-
ant reality.26 Denial can be manifested through different approaches, including intel-
lectualizations, humor, and anger. This coping technique can also affect pathologic

Fig. 3. Multiple psychosocial impacts on patient’s quality of life. (Data from Schnaper N,
Kellner TK. Psychosocial effect of cancer on the patient and the family. In: Peterson DE, Elias
EG, Sonis ST, editors. Head and neck management of the cancer patient. Boston: Martinus
Nijhoff Publishing; 1986. p. 503–7.)
148 Valdez & Brennan

processes when it interferes with disease treatment. For example, a patient in denial
may see a mass on his face but readily defer treatment, believing that there is no need
for intervention. In these cases, denial is used in a destructive manner, diminishing
chances for successful treatment and rehabilitation. However, this mechanism has
the potential to be used constructively by permitting patients with oral cancer to
have hope for a cure or a better future without acknowledging detrimental aspects
of the disease.13,14
Projection is a coping mechanism by which the patient with oral cancer attributes
a false feeling to another person. An example of this is in the case in which a patient
believes their health care provider is hurting them and does not intend to cure them
for their own benefit. This point of view can cause stress in the patient and difficulty
in the patient–provider relationship. A poor patient–provider relationship can lead
to poor outcomes for the patient due to provider frustration or patient
noncompliance.13
Another mechanism of defense is repression, or unconscious forgetting, and its var-
iations, which include suppression (conscious forgetting), regression (reversion to an
early life stage), and magical thinking (expecting health care professionals to be om-
nipotent and assure a cure for their disease). Repression can lead to false judgments
surrounding the patient’s course of treatment or disease prognosis.25
Patient personality and individuality is an important consideration in management of
patients with oral cancer. The individual whose premorbid personality was flexible,
aggressive, and embodied a sense of self-worth and humor may view their disease
as a hurdle or challenge to overcome.22 They will likely be more compliant during treat-
ment, participate in activities they enjoy, and seek social support. However, patients
lacking these premorbid personality traits may be more likely to revert to unhelpful
coping and defense mechanisms, potentially making their treatment more compli-
cated and compromising posttreatment outcomes. It is important to recognize that
each patient, has a unique personality and will cope in their own way with their own
assets or liabilities.24
For the most part, treatment of patients with oral cancer involves surgical interven-
tion. This experience, or anticipation of this experience, can provoke emotional trauma
and can seem to the patient as a life-or-death threat. The patient reaction to surgery is
complex and fluctuates based on their personality, defense systems, and accumu-
lated fears and traumas. Distortions of the face typically play a significant role in
any surgical experience due to the threat of change in one’s physical appearance or
body image.26 In many social situations, patients with facial scarring or facial disfigure-
ment are approached with negativity. This stigmatized response (horror, fear, or revul-
sion), or the patients’ expectation of this response may cause further emotional stress
in surgical oral cancer cases.14,21
In the postoperative stage of treatment, the patient may believe that their body im-
age, and on a larger scale, their sense of identity, is shattered. They may believe that
an obvious facial misconfiguration, such as a tongue or jaw resection, will cause them
to be rejected or unwelcome in their social circles.27 After surgery, these patients may
experience social withdrawal, depression, rage, and impotency, with some even
regressing to infantile behavior.28
Some postoperative patients will develop a hyperawareness of their disfigurement,
causing them to anticipate social stigmatization and even wear scarves or surgical
masks to prevent drawing the attention of others.29 Patients may develop frustration
in efforts to communicate with others because facial expression and speech are
important to communication and social success but may be limited by their disfigure-
ment. Patients in these situations may show apathy, bitterness, and quibbling toward
 Impact of Oral Cancer on Quality of Life 149

society. This leads to the experience of social death, by which the patient withdraws
from all forms of social interaction and support.25
In addition to cancer therapy, a comprehensive rehabilitation, including plastic sur-
gery, dental prostheses, psychotherapy, and occupational and physical therapy, may
help the patient revert from the negative effects of cancer treatment.29 This may
include rebuilding feelings of self-worth, increasing physical functionality, and rees-
tablishing lost social support.14 Group therapy with other survivors can also be a use-
ful support mechanism, although individual therapy is often preferred by patients with
facial involvement.26 Psychological treatment should be implemented into standard of
care practice for patients with oral cancer. Psychiatric medications may also be help-
ful to provide comfort for the patient during a difficult disease course. In this case,
referral to a psychotherapist is useful to ensure comprehensive patient care.13

Impact on the Family

Family is a fundamental component in the journey of a patient with oral cancer. The
family’s reactions and emotions regarding the patient’s disease may either have a
positive or negative effect on the patient as they move through the stages of diagnosis,
treatment, and rehabilitation, and should be considered in the patient’s plan of care.25
There are many directions from which families may approach their loved one’s dis-
ease. Some may emotionally overwhelm the patient, whereas others may opt to aban-
don the patient at the time of the diagnosis. Balanced support from the patient’s family
is important and neither extreme is positive in regard to patient outcomes.30
In many cases, the family’s most immediate problem is the threat of loss or separa-
tion from their loved-one, which can evoke sensations of sadness, sorrow, and anxi-
ety. Usually, the family process of grief and mourning begins with shock and sense of
unreality, followed by emotional releases; hostility; depression; physical symptoms
(anorexia, guilt, panic); and, finally, the experience of readjustment to reality.31 Fam-
ilies, like individuals, have different personalities, characteristics, and dynamics. All
of these phases, with different intensities, may be encountered from the families of pa-
tients with oral cancer.24,25,30
More intense reactions can begin pathologic processes in family members experi-
encing grief. These reactions include delayed grief, chronic grief, overdependence,
reckless and dangerous behavior, and even physical illness. These reactions require
the intervention of specialists and need to be identified early by psychotherapists.27,32
A controversial aspect that has a direct effect on the family and society is the matter
of whether a patient’s behavior makes them cancer-prone.32 This theory suggests that
emotional states function etiologically and implies that patient’s sins contribute to pa-
tient’s condition. The idea that the patient’s alcoholism, use of tobacco, or lack of
ambition are causative in the development of oral cancer is reinforced in the minds
of others based on the observation of lower socioeconomic status, older age, or
appearance.13,14
Support from family and friends in the patient’s course of disease is incredibly
important. The family or other social support group must be able to accept that the
period of adjustment to disease diagnosis and treatment can be extensive and that
affection must be steady.33

Impact on Health Care Providers

Health care providers are a source of knowledge and support to the patient with oral
cancer. However, health care providers are also human with their own personality and
virtues. Some providers find it impossible to work with patients with oral cancer,
150 Valdez & Brennan

others may find it difficult, and others may establish a comfortable clinical distance
and even experience gratification in the field.14,34
The sense of omnipotence in a health care provider can cause poor judgment and
negatively affect the patient.26 At this point, the provider is concerned more about
curing the patient than caring for them and any setback on the part of the patient is
experienced as a failure of omnipotence.35 This is unconscious in many health care
providers but manifests itself in subtle ways such as anger toward the patient, avoid-
ance, or patronization, which can significantly impact the relationship between the pa-
tient and their health care provider.14,36
When it becomes evident that a patient may have poor outcomes or a terminal prog-
nosis, the omnipotent provider is compelled by guilt and accountability to abandon the
patient before death, thus avoiding retribution.26 Health care providers who have cho-
sen to work in the cancer field should be emotionally mature and have a clear appre-
ciation for their sense of omnipotence.14,35,37
Health care providers are vulnerable individuals and can be subject to exhaustion
from the stress of their profession. Attentiveness to signs of depression is funda-
mental; self-medication, excessive alcohol intake, and fatigue are indicators of
burnout.38 Patients and health care providers must create a relationship of trust to pro-
vide the basis to tolerate the desolation associated with the oral cancer diagnosis.39

FINANCIAL IMPACT

A large percentage of patients receiving oral cancer treatment reported their condition
has a significant impact on their finances and that the cost of the treatment was a ma-
jor burden to their family members.40
Treatment costs, work absences, medication prices and other miscellaneous ex-
penses can severely burden patients with oral cancer, especially patients with limited
financial resources.41
Financial struggle can cause significant stress in patients undergoing oral cancer
treatment. The complex financial issues associated with cancer diagnosis within the
family are often hidden from friends and health care professionals as the family strug-
gles to make decisions, manage emotions, and preserve the family unit.42
Patients may be hesitant to request financial aid. It is incumbent on the team of
health care providers to support their patients by connecting them to community re-
sources that can provide assistance with financial management of disease. Social
workers, case managers, and nurse navigators are often knowledgeable in these
areas and can provide information on insurance coverage for patients and connecting
with local and national nonprofits for monetary assistance.14
A referral to social workers and financial advisors may be appropriate for patients
who have financial burdens as a result of their oral cancer diagnoses. A significant per-
centage of patients may need financial counseling to budget expected and unex-
pected oral cancer costs.40
Employment for oral cancer survivors represents safety, self-esteem, and quality of
life. However, patients may not always return to work after rehabilitation due to
different reasons. Patients may encounter several physical challenges to the oral cav-
ity that may influence patient employability and ability to maintain a job. Anxiety, xero-
stomia, trismus, sticky saliva, teeth pain, and problems with social eating and social
contacts can distress the patient’s ability to function with the work environment.43
One study reported that patients with oral cancer who were employed at the time of
the diagnosis discontinued work due to 5 significant factors: (1) fatigue, (2) change in
speech, (3) change in eating, (4) pain or discomfort, and (5) change in appearance.44 A
 Impact of Oral Cancer on Quality of Life 151

separate study reported that the way in which patients handle unemployment can
affect overall adjustment during the course of their condition.45 Factors such as phys-
ical health, financial resources, and patient personality will contribute to the unemploy-
ment adjustment. Individuals with higher self-esteem, perceived control, and higher
levels of optimism are more likely to cope successfully.26 Patients with physical impli-
cations may develop depression or anxiety and may struggle more in regard to unem-
ployment. This type of patient may have poor outcomes in other psychosocial areas
and be at risk for engaging in high-risk behaviors such as substance abuse.13
Family counseling is advantageous in certain situations. Unemployment of the pa-
tient will often cause role changes within the family structure, leaving another family
member responsible for the lost income. This can cause stress within the family and
feelings of guilt in the patient.46 The patient’s accessibility to financial support can
also affect the patient’s capacity to follow through on a referral for therapy or coun-
seling. For patients who cannot afford to pay for treatment or psychotherapy on their
own, access to community resources can lessen their anxiety when these services are
advised.42

SUMMARY

Quality of life considerations are important in evaluating treatment outcomes of oral

cancer. The diagnosis of oral cancer itself can have implications on the patient’s
perspective of their experience, which can alter the trajectory of treatment and reha-
bilitation, creating more long-term effects. Several aspects of a patient’s life, including
psychosocial, physical, and financial, are all affected by the various stages of oral can-
cer and play a part in contributing to negative or positive effects in the patient’s quality
of life. Health care providers should be attentive not only to the clinical effects of treat-
ment but also to quality of life issues because it will improve overall patient care and
satisfaction.

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