23

Rehabilitation and Quality

of Life Assessment in
Head and Neck Cancer
BHUVANESH SINGH, MD

In 1947, the World Health Organization (WHO)

expanded its definition of health beyond the absence
of disease and infirmity, to include the state of
physical, mental, and social being. This milestone
change in connotation elevated the study of healthrelated quality of life to an accepted endpoint for clinical studies and promulgated investigator interest.1,2
Reflecting its increased use in medical studies, quality of life was introduced as a category in the Index
Medicus in 1966.1 Since then, the number of healthrelated quality of life publications had grown exponentially in the medical literature (Figure 231).
Of all disease states, the role of quality of life
(QOL) assessment is most persuasively essential in
patients with cancer. Stressing this importance, the
National Institutes of Health and the Food and Drug
Administration implemented several initiatives to
encourage the more routine inclusion of the QOL
assessment in oncology trials. As a result, the number of quality of life related studies in oncology burgeoned in the medical literature (see Figure 231). In
sequence, QOL also became important in the management of head and neck cancer (HNC), particularly given the multitude of QOL-associated problems and the absence of survival differences between
therapeutic modalities used in the treatment of these
patients.35 The comment made by Hays Martin in
the 1940s remains valid today: In deciding a method
of treatment we should not, in our eagerness to
achieve cure, lightly disregard the crippling that may
result from our surgical endeavors.35

In conformity with this statement, studies have

shown that patients are willing to sacrifice survival
in favor of QOL issues.6 List and colleagues have
shown that in order of preference, patients with head
and neck cancer rank being cured first, followed by
living as long as possible, having no pain, being able
to swallow, and having a normal amount of energy at
the top end of their desired outcomes from cancer
treatment.7 This chapter presents an overview of
QOL assessment in patients with HNC and reviews
its impact on treatment, rehabilitation, and support
policies in head and neck cancer management.
Definition of Quality of Life
Since its inception, assessment of QOL has remained
controversial, mainly due to the ambiguity in its definition and the difficulties with the objective assessment of a subjective phenomenon. The variability in
the concept of QOL can be seen by several different
definitions published in the literature. Calman
defined quality of life as the gap between the
patients expectations and achievements.8 Spitzer, on
the other hand, suggested that the measurement of
quality of life should be restricted to the assessment
of a series of characteristics among individuals that
are sick.2 Schipper and colleagues reported that quality of life represented the functional effect of an illness and its therapy on a patient, as perceived by that
individual. Ware concluded that quality of life should
measure both health and the full spectrum of health
467

468

CANCER OF THE HEAD AND NECK

Figure 231. Quality of life publications by year. Searches performed using the following terms:
quality of life (MeSH term or Text word) and crossed with year of publication and cancer OR neoplasms (MeSH term or Text word) or head and neck neoplasms (MeSH term or Text word).

states ranging from disease to well-being.9b Torrance

suggested that quality of life is measured at each
point in time between birth and death, suggesting
that this is an all-inclusive concept that incorporates
all factors that affect the individual.10 Kaplan and
colleagues limit their assessment of health-related
quality of life to three functions, namely: mobility,
physical activity, and social activity.11 This wide variation in definitions is reflected in the diversity of
assessments provided by available quality of life
instruments. Clearly, given the differences in the
evaluation target, the choice of QOL instruments
depends on the desired assessments.
Quality of Life Instruments
As the science of QOL assessment has matured,
standardized testing has been implemented to validate QOL instruments, centered on establishing reliability, validity, and normative data.1 Reliability can
best be defined as the usability of a particular instrument, which can be divided into four concepts:
namely test-retest reliability, alternate-form reliability, internal consistency, and interobserver reliability. Test-retest reliability measures the stability of
the test over time. Typically, the same test is given to

a group of individuals twice, with an intervening

period of time. In order for the quality of life measures to meet the requirements for test-retest reliability, there should be minimal change in the score
obtained between the two measurements in a stable
population. Alternate-form reliability is the comparison of the test instrument with an established quality of life measure. Internal consistency is a concept
applied to quality of life instruments that are aiming
to measure the same characteristics. This is a test of
correlation among individual items contained in the
instrument to determine the extent to which each
instrument correlates with the total score. The last
form of reliability, interobserver reliability, is based
on the correlation of the use of an instrument by two
different observers of the same individual.
Validity is a measure of the instruments stability to
assess the characteristics it aims to assess. Although
reliability is necessary to determine its validity of a
QOL measure, it is inadequate for establishing validity independently. Validity can be assessed in several
ways. Face-validity is not truly a technical form of
validity assessment, and refers to the integrity of the
instrument as judged by the experimenter. Social
validity is the assessment of whether the information
measured by an instrument is what the researcher

Rehabilitation and Quality of Life Assessment in Head and Neck Cancer

intends. Content validity is a measure of the completeness of the instrument in assessing its desired
endpoints. Criteria grid validity is associated with the
empirical relationship between a measure and the reliable criteria for comparison. Construct-validity refers
to the inclusion of a group of related behaviors to
assess a single psychosocial construct. Finally, sensitivity to change refers to the ability of a measure to
identify changes occurring in the given population.
Instrument norms are a standard for comparison
for QOL instruments. When good normative data is
established, instruments can be used to compare
individuals to a reference group. Norms should be
based on a representative population of sufficient
sample size. The normative data should be broken
down into subcategories, such as age and gender.
Finally, normative data should be available in the
form of percentiles and standard scores.
Even with the significant advances and statistical
scrutiny applied to QOL assessment, the complexity
of studying QOL still results in inconsistencies in
reporting. Gill and Feinstein confirmed this in a
study of representative QOL publications in the
medical literature. Their analysis found several
flaws, including that investigators conceptually
defined quality of life in only 11 of the 75 articles
reviewed (15%), identified the target domain in only
47 percent, gave reasons for selecting the chosen
quality of life instrument in only 35 percent, and
aggregated their results into a composite QOL score

469

in only 38 percent of the eligible articles. These

authors concluded that since QOL is a unique personal perception, most measurements in the medical
literature seem to aim at the wrong target; thus they
made several specific recommendations to improve
QOL assessment. In addition to the issue identified
by Gil and Feinstien, HNC-QOL studies have also
been plagued by other recurrent problems, including
cross-sectional analyses, limited sample size, inclusion of a diversity of tumor types, and a lack of uniformity in reporting.12 However, as experience with
QOL measures increases, newer studies on HNC
promise to deliver significant and usable information, allowing their direct clinical application.
Quality of life measures can be grouped into
three different categories, namely general measures,
disease-specific measures, and the use of a battery
of integrated instruments. The general measures of
QOL are designed for employment independent of
the type of disease, treatment, or treatment interventions that are provided. The use of general instruments allows a QOL ranking that is comparable
across disease states. Disease-specific measures
focus their attention on the assessment of responsiveness to a particular treatment or course of a specific disease process. Table 231 reviews some of
the most commonly used general measures for the
assessment of quality of life, and Table 232 shows
the available measures for the assessment of head
and neck cancer-specific quality of life.

Table 231. SELECTED GENERAL QUALITY OF LIFE INSTRUMENTS

No. of
Items

Reliability/
Validity

Medical Outcomes Study

Short Form 36 (MOS-SF-36)

36

Yes

A self-administered assessment that requires 10 minutes to

complete. This is not a cancer-specific measure

Sickness Impact Profile

136

Yes

Designed for use as a self-administered or intervieweradministered assessment that requires 30 minutes to

complete. This is not a cancer-specific measure

Nottingham Health Profile

(NHP)

45

Yes

A general QOL tool that is well validated but is not a cancerspecific measure. It requires 10 minutes to complete

Functional Living Index-Cancer

(FLIC)

22

Yes

A general measure for patients with cancer that has subscales, and requires 10 minutes to complete

European Organization for Research

and Treatment of Cancer Quality of
Life Questionnaire (EORTC-QLQ-C30)

30

Yes

A well validated general instrument for use in cancer

populations. Has a sub-scale for head and neck cancer.
Requires 30 minutes to complete

Functional Assessment of Cancer

Therapy (FACT)

28

Yes

Well validated measure with a sub-scale for head and neck

cancer. Requires 10 minutes to complete

Measure

Comments

470

CANCER OF THE HEAD AND NECK

Table 232. HEAD AND NECK-SPECIFIC QUALITY OF LIFE INSTRUMENTSHEAD AND NECK
No. of
Items

Reliability/
Validity

Yes

Easy to use, completed in less than 5 minutes, with

excellent sensitivity in patients with head and neck cancer.
A revised version has been published recently

3
sub-scales

Yes

Designed as a clinician-rated survey, but has been used as

a self-administered questionnaire

Head and Neck Survey

11

Yes

Formulated by an expert panel with the goal of assessing

unique dimensions of head and neck-specific health

EORTC-QLQ-C30Head and
Neck Module

21

Yes

Initially developed on radiation-treated patients. Designed for

use in combination with the well-validated EORTC-QLQ-C30

Functional Assessment of Cancer

Therapy (FACT)Head and
Neck Module

11

No

Usually in combination with the FACT-G measure (28 items),

which is well validated

Functional Status in Head and Neck

CancerSelf Report (FSH&N-SR)

15

Yes

Assesses symptomatic and functional outcome in patients

treated for head and neck cancer

Head and Neck Quality of Life

Questionnaire

20

Yes

Includes components of 2 previously validated measures

within a new instrument

McMaster University Head and Neck

Radiotherapy Questionnaire

22

Yes

Designed for assessment of acute radiation toxicity

Quality of LifeRadiation Therapy

InstrumentHead and Neck Module

14

Yes

Designed for use in patients undergoing radiation treatment

for head and neck neoplasms. Validated in a single smallscale study

Mayo Clinic Post-laryngectomy

Questionnaire

48

No

Only used in a single study of surgical patients at the Mayo

Clinic. Multiple items may make it comprehensive but
cumbersome to use

Linear Analog Self-Assessment

Scale for Voice Quality (LASA)

16

No

Designed for voice assessment after treatment for larynx

cancer

Measure
University of Washington Quality of
Life Head and Neck (UW-QOL)
Head and Neck Performance
Status Scale

General measures are well validated for use in

the assessment of quality of life by their widespread
use. In contrast, the head and neck cancer-specific
measures are relatively new and therefore have not
been thoroughly investigated. However, given that
studies have shown a better correlation with head
and neck-related domains when compared to general
measures, it is evident that HNC-specific instruments do have some advantages over general measures.13 The last approach for QOL analysis surmounts the dilemma over selection of QOL
measures, by the use of a battery of instruments.
This allows a broad-based assessment of QOL,
which can include both general and disease-specific
measures. Nonetheless, there are associated shortcomings in the required time, resources, and patient
compliance with the use of this approach, resulting
from the increased number of items.
Given the diversity and divergent information
potentially yielded, the selection of QOL instruments is of paramount importance in QOL analysis.

Comments

There is no single ideal QOL instrument, but rather

instruments that function better in specific scenarios. Selection of a non-validated instrument, without
good normalized data, will yield information of limited value. Conversely, the selection of an established instrument that is too cumbersome for routine
use also limits the acquired data quality. The main
factors impacting on the selection of a QOL instrument include: the intended analytic endpoints, the
method of administration, feasibility of completing
the analysis, and the usability of the data obtained.
In addition, many instruments are now available for
QOL assessment in patients with head and neck cancer (see Table 231). With respect to HNC-specific
measures, most instruments are designed for global
use in all HNC patients, while others are designed
for treatment-specific analyses. Algorithms and
checklists for the selection of an appropriate QOL
instrument for an intended study are available, and
are based on the evaluation of a studys needs and
the availability of resources.1

Rehabilitation and Quality of Life Assessment in Head and Neck Cancer

QUALITY OF LIFE ASSESSMENT IN

HEAD AND NECK CANCER
The limitations in QOL assessment in HNC, detailed
previously, confound the usefulness of the derived
information. Nonetheless, several themes are recurrent in QOL studies and have resulted in changes in
therapeutic and rehabilitative interventions.4,5,1318 Perhaps the most significant contribution of these studies
has been a change in the dictum of cure at all costs,
to incorporate the impact of treatment interventions on
patient functioning. In this regard, it is important to
understand that the physicians perception of QOL is
often quite different from that of the patient, as confirmed in analytic studies. In one study assessing QOL
concerns in 20 laryngectomy patients and 20 health
care professionals, the patients main concerns were
with the physical consequences of surgery and interference with social activities, while physicians primarily focused on communication, and self-image and
self-esteem problems.19 Accordingly, QOL assessment
must be patient-based to more accurately direct methods for outcome quantification and improvement.
Given the limitations in QOL assessment in the literature, the following section includes selected representative dataextracted from HNC-QOL, functional, and rehabilitative studiespresented to provide
perspective and highlight important aspects of the
impact of QOL analysis on the management of HNC.
Global Quality of Life Assessment
Global quality of life assessments form a basis for
QOL comparisons between disease states and to normative data. These studies have shown that the relative impact of HNC and its treatment on QOL is more
significant than other cancers. Terrell and colleagues
looked at 397 patients with HNC using the SF-36 in
combination with disease-specific measures.18,20
They found that the QOL of patients with HNC was
significantly poorer than the Medical Outcomes
Study Groups results for similar age patients. A study
by Gritz and colleagues prospectively assessed QOL
in 105 previously untreated patients using PSS-HNC,
Profile of Mood States, and Cancer Rehabilitation
Evaluation System-Short Form. 21 They noted that the
QOL of patients treated for HNC was poorer than for
lung or colon cancer. The QOL for patients with

471

active head and neck cancer is poorer than normative

data from male cancer patients, male non-prostate
cancer patients and female breast cancer patients.21
Global assessments show that the perception of
overall quality of life in patients with HNC is
affected by several factors, including the mode and
duration of treatment. Continuous surveillance of
patient QOL is therefore required. Gritz noted that
QOL-HNC changed significantly in the first 12
months after treatment of head and neck cancer.21
Although most domains improved with time,
domains of marital and sexual functioning showed
progressive declines. These authors also showed that
patients treated with primary radiation therapy had
declines in QOL with time.21 A study by Rogers and
colleagues showed similar results, with return to
pretreatment QOL scores occurring by 12 months
using the UW-QOL questionnaire.22 Huguenin and
colleagues, using the EORTC QLQ-C30 and the
Head and Neck module, showed that QOL in
patients receiving radiation treatment was influenced by the location of the lesion, with nasopharyngeal cancer patients having the worst outcome
due to increased target volume.23
Speech and Swallowing
The impact of surgery on speech and swallowing
functions are logical, however, these disabilities also
extend to patients receiving radiation treatment, with
or without chemotherapy. Studies have shown that
resections within the oral cavity are mainly associated with problems in bolus preparation and oral
transit; oropharyngeal resections, on the other hand,
result in impairment of the pharyngeal phase of swallowing in addition to the oral phase. Partial resection
of the larynx, especially the supraglottis, disrupts the
pharyngeal phase and also increases the risk of aspiration.24,25 Many swallowing maneuvers have been
developed to augment swallowing function in these
patients.24,2628 In addition, changes in surgical practice to include free tissue transfer and sensory innervation show promise for improving outcome. In a
study by Wilson and colleagues, patients reconstructed with rigid fixation after hemimandibulectomy had better scores in eating ability and overall
quality of life, in addition to physical appearance.29

472

CANCER OF THE HEAD AND NECK

Functional assessment has confirmed the deleterious impact of radiation on speech and swallowing,
showing reduction in oral and pharyngeal efficiency
and motility.30 In Epsteins study utilizing EORTCQLQ-C30 with an oral symptom and function scale
for the assessment of 100 patients treated with radiation therapy for HNC, 63 percent of patients had
complaints of dysphagia and 51 percent had difficulties relating to speech.31
The presence of functional disorders in speech and
swallowing has a profound impact on QOL. A study
by List and colleagues showed that only 33 percent of
patients achieved a perfect score for normalcy of diet
and 60 percent for eating in public in a cross-sectional
study of 181 patients undergoing treatment for head
and neck cancer.32 These authors also reported that
only 55 percent of patients have a perfect score for
comprehensibility of speech. In another study, List
and colleagues longitudinally assessed QOL in 64
patients undergoing concomitant chemoradiation
treatment for HNC using FACT-HN, PSS-HN, and the
McMaster University Head and Neck Radiotherapy
Questionnaire.33 They found significant alterations in
speech and swallowing function that showed some
patients improved over 12 months, but residual
deficits remained in a significant number of cases.
However, they did not find a direct relationship
between function and QOL outcome.34
Perhaps speech and swallowing issues are most
pertinent in patients with laryngeal cancer. In the
absence of outcome differences, studies showing
improved speech outcome in patients with early
(T1/T2) larynx cancers have shifted the treatment
paradigm in favor of radiation therapy. Interestingly,
in a review of five studies directed at the assessment
of voice quality in radiation versus surgical treatment, three showed no clear advantage in voice
quality. This reflects the deleterious impact of radiation treatment on voice quality. Stoicheff and colleagues showed, in 223 patients treated with radiation, that 83 percent were judged to be normal
subjectively, yet 80 percent of patients self-reported
voice difficulties, ranging from voice fatigue and
reduced volume to lack of clarity.35 Functionally, the
negative effect of radiation on voice can be correlated to decreased phonatory time and frequency
range, increased jitter and shimmer, and diminished

or absent mucosal waves in patients undergoing

radiation treatment for T1/T2 glottic cancer.36
In patients with advanced HNC, especially larynx
and hypopharynx cancers, organ preservation strategies are as effective as laryngectomy-based treatment
with respect to survival.37 However, larynx preservation is achieved in up to 64 percent of cases in the
organ preservation arm. This information has led to
increased use of chemoradiation treatment in patients
with advanced cancers. Interesting accumulating
studies have shown a lack of correlation between
speech preservation and overall QOL. A study by De
Santo and colleagues on 111 patients with total
laryngectomy, 38 with near-total laryngectomy, and
23 with partial laryngectomy, using the Psychological Adjustment to Illness Scale (PAIS) and the Mayo
Clinic Post-laryngectomy Questionnaire, showed
that QOL and speech function are independent, and
that satisfactory QOL can be achieved independent
of altered speech.38 In another study, looking at 46 of
65 survivors from the Veterans Affairs (VA) Laryngeal Cancer Study Group No. 268, Terrell and colleagues showed that QOL was superior in patients in
the organ preservation arm, mainly due to improved
freedom from pain, greater emotional well-being,
and lower levels of depression, rather than improved
speech outcomes.39 This is reflective of the lack of
significant differences in technician-assessed speech
intelligibility scores in 24-month survivors. This was
judged to be acceptable in 96 percent of the organ
preservation group, 91 percent of the chemoradiation
group, and 85 percent for the total laryngectomy
group from the VA study population.40 Similarly, a
report by Deleyiannis and colleagues failed to correlate functional disability with QOL scores in patients
undergoing laryngectomy.41 Finizia and colleagues,
in a case-matched study, showed that although
patients treated with radiation for larynx cancer fared
better functionally, QOL in this group was not dissimilar from laryngectomized patients.42 These studies indirectly reflect the negative impact of chemoradiation treatment on speech function, the positive
effects of speech rehabilitation in patients with total
laryngectomy, and a limited impact of functional outcome on QOL.
Recovery and rehabilitation of post-treatment
speech and swallowing is dependent on several fac-

Rehabilitation and Quality of Life Assessment in Head and Neck Cancer

tors, including the stage of disease, the extent of

surgery, the technique and dose of radiation, and use
of rehabilitative measures.31,43 Several techniques
are available for swallowing rehabilitation, of which
time post-treatment and adaptation often are the
most valuable. In contrast, direct intervention with
early speech therapy interaction, electro-larynx utilization, training in esophageal speech, and most
importantly tracheoesophageal prosthesis placement
has had significant impact on communication capability of patients with head and neck cancer. Urken
and colleagues showed that the use of free tissue
transfer in oromandibular reconstruction yielded
superior functional outcome compared with similar
patients who did not have bony mandibular reconstruction.44 The use of an oral prosthesis improves
both speech and swallowing in the patient completing treatment for HNC. Placement of these prostheses correlates with improved eating, esthetic satisfaction, reduced pain, and improved physical and
mental well-being.45 The role of the prosthodontist
in improvement of swallowing function is multifold,
and can help compensate for deficits in the hard and
soft palate, tongue, and tongue base.46
Olfaction and Gustation
Nasal airflow and intact sensory innervation are
essential for normal olfaction and gustation. All of
the modalities used in the treatment of patients with
HNC have a potential to adversely impact olfaction
and gustation. Surgery has direct effects in terms of
sacrifice of sensory nerves for olfaction (craniofacial resection) and taste (lingual nerve resection),
resection of taste organs and occlusion of nasal airway. It can also have indirect effects, as in laryngectomy patients who no longer have air passing
through the nasal cavity. Van Dam and colleagues
showed the presence of olfactory dysfunction in
two-thirds of 65 patients undergoing laryngectomy.47 They noted that patients who were able to
smell actively employed several different methods,
most notably the use of facial muscles. Moreover,
gustatory dysfunction in these patients was directly
correlated to olfactory function.
A study by Epstein and colleagues, using the European Organization for Research and Treatment of

473

Cancer (EORTC) Quality of Life (QLQ)C30 index

with an added oral symptom and function scale, identified complaints of changes in taste in 75 percent of
65 patients treated with radiation therapy for oropharyngeal cancer.31 Several agents, such as amifostine
and pilocarpine, have been employed in attempts to
limit radiation therapy-induced xerostomia and gustatory dysfunction. A study by Buntzel and colleagues
showed a 38 percent reduction in severe xerostomia
(grade 2) and a 64 percent reduction in loss of taste
with the addition of amifostine.48 Another study by
Zimmerman and colleagues reported similar results
with the use of pilocarpine.49 Johnson and colleagues
showed that the addition of pilocarpine was beneficial
in improving post-radiation oral dryness in 44 percent
of cases, oral discomfort in 31 percent, and speaking
ability in 33 percent.50 In a study assessing taste, Ripamonti and colleagues showed the presence of gustatory dysfunction in 100 percent of patients receiving
radiation, the severity and recovery of which was
improved by the use of zinc sulfate during treatment.51
Pain
Pain is a common complaint among patients with
cancer, especially patients with head and neck cancer.
Pain can be acute, as a consequence of surgery, or
chronic, as in shoulder disability secondary to accessory nerve sacrifice (Figure 232).52,53 Pfister and
colleagues found a 31 percent prevalence of frequent
or persistent pain in a cross-sectional analysis of 194
treated patients, 67 percent of which was moderate or
great in intensity. Pain scores tend to improve with
time in this population, but a small but significant
percentage have persistent, often disabling pain. A
study by Chaplin and Morton showed that the presence of pain diminished from 48 percent at diagnosis
to 26 percent after treatment. Interestingly the prevalence of shoulder pain increased with time.54
The precise cause of pain and its perception cannot be identified in all cases. A study by Chua and
colleagues showed that pain in HNC patients is
related to cancer recurrence (35%), treatment sequelae (30%), multiple etiologies (25%), and unrelated
causes (10%).55 The most common pain type is
mixed nociceptive and neuropathic (37.5%), but
nociceptive pain alone (32.5%), myofacial (13%),

474

CANCER OF THE HEAD AND NECK

neuropathic (7.5%) and other mixed types of pain

(7.5%) also occur. The character and severity of pain
is influenced by the location of the cancer, type of
treatment and time after treatment.56
Studies have shown a direct correlation between
the presence of pain and lower quality of life in
patients with head and neck cancer, with the most
significant impact on general well-being and psychosocial distress.54 Accordingly, QOL improvements can be impacted by the use of effective pain
control schema. Cancer pain management paradigms have been established to allow a directed
approach to pain control. The use of the WHO analgesic ladder is highly successful in controlling
HNC-associated pain, with all but two patients experiencing relief in a study of 62 consecutive terminal
HNC patients.57 Finally, integral to pharmacologic
interventions is the use of adjunctive measures, such
as intervention for depression, and physical therapy
in patients with shoulder disability.

Figure 232.

The deformity following radical neck dissection.

Psychosocial Impact
The psychosocial impact of a cancer diagnosis and its
treatment often supersede the physical consequences
of treatment. Psychosocial issues can be addressed
via several different domains including emotional
well-being, role functioning, social relations, sexuality and assessment of anxiety or stress. Affected
patients have increased psychosocial stressors with
resultant increases in depression and suicides.58 One
study found that cancer patients accounted for onequarter of all hospital-based suicides, of which 19
percent had head and neck cancers.59
Coping methods are important in overcoming the
psychologic impact of cancer. In addition, evidence
from prospective studies suggests that coping methods have a significant impact on cancer outcome. A
classic article, prospectively examining the outcome
of patients with early-stage breast cancer, showed that
patients with a fighting spirit or denial type of coping approach had better survival outcomes than those
exhibiting stoicism or helplessness. These results
have been echoed in studies of melanoma patients as
well. A recent study of patients with HNC showed
that patients with significant psychosocial complaints
prior to treatment did better than stoic patients who
did not express their negative feelings.60 Often coping
can be enhanced by the presence of strong social support groups, as well as through health care worker
involvement. De Boer and colleagues showed a positive correlation between rehabilitation outcomes and
open discussion of illness in the family, social support
from others, and adequate information from specialists.60,61 Hammerlid and colleagues confirmed the
usefulness of support groups and short-term psychoeducational programs for improving psychosocial
outcome and QOL in HNC patients.62
Taken as a whole, assaults on psychosocial functioning in patients with HNC are multifactorial, but
can be grouped into immediate and delayed concerns. In the immediate period, the overriding issues
in these patients are fear of the unknown and the
apprehension of the physical, social, and functional
effects of cancer treatment. Many of these concerns
can be addressed by detailed explanation of the
anticipated course of events, reassurance, and establishment of a support network. In the long-term,
work situation, functional status, communication

Rehabilitation and Quality of Life Assessment in Head and Neck Cancer

concerns, issues of intimacy, sexuality, self-image

and identity become more relevant. One study
showed that over 45 percent of patients report selfimage problems after treatment for HNC.63 Often
patients concerned about image and appearance isolate themselves from family, friends and support
groups.60,61 In addition, a decrease in or lack of sexual contact are reported by 8 to 48 percent of
patients treated for HNC.61,64
Several methods can be employed to improve
psychosocial outcomes; it is paramount that these
issues be addressed with the patient and their importance reinforced. The use of educational programs,
exposure to cancer survivors, discussions with
appropriate health care professionals such as speech
therapists prior to initiating treatment, and the establishment of clear lines of communication are basic
to the management of all cancer patients. Studies
have confirmed that patients who are informed
about their condition and its treatment have better
adjustment in interpersonal relationships and intimacy with family.60,61 Consultation and treatment
with an appropriate psychiatric professional is indicated in many situations. Often the alleviation of
treatment sequelae has a significant impact on psychosocial outcomes. Studies from the Netherlands
Cancer Institute show that when physical symptoms
of treatment are ameliorated, such as correction of
excess sputum production, coughing, and the need
for frequent forced expectoration in laryngectomy
patients, psychological stress is reduced, social contacts are increased, and overall QOL is improved.
Similarly, better psychosocial outcome can be
achieved by addressing cosmetic concerns. For
example, even though there is no functional benefit,
better psychosocial results are reported for patients
undergoing mandible resection if mandibular reconstruction with free tissue transfer is performed.
CONCLUSION
Although still in its infancy, quality of life assessment
has already impacted on our approach to the management of patients with head and neck cancer. With
improved methodology, validation of head and neck
cancer-specific instruments, and the completion of
phase III trials where it is a primary endpoint, the

475

impact of QOL assessment on the management of

head and neck cancer will likely expand. At present,
lessons learned from available QOL data support the
use of specific treatments, patient education programs, rehabilitative efforts, and indicate a need for
diligence in identifying and addressing QOL issues.
REFERENCES
1. McSweeny AJ, Creer TL. Health-related quality-of-life
assessment in medical care. Dis Mon 1995;41(1):171.
2. Spitzer WO. State of science 1986: quality of life and functional status as target variables for research. J Chronic Dis
1987;40(6):46571.
3. Moore GJ. Quality of life after radiation therapy for base of
tongue cancer. Oncology (Huntingt) 1996;10(11):16438.
4. Morton RP. Evolution of quality of life assessment in head
and neck cancer. J Laryngol Otol 1995;109(11):102935.
5. Morton RP, Witterick IJ. Rationale and development of a
quality-of-life instrument for head-and-neck cancer
patients. Am J Otolaryngol 1995;16(5):28493.
6. McNeil BJ, Weichselbaum R, Pauker SG. Speech and survival: tradeoffs between quality and quantity of life in
laryngeal cancer. N Engl J Med 1981;305(17):9827.
7. List MA, Stracks J, Colangelo L, et al. How do head and neck
cancer patients prioritize treatment outcomes before initiating treatment? J Clin Oncol 2000;18(4):87784.
8. Calman KC. Quality of life in cancer patientsan hypothesis. J Med Ethics 1984;10(3):1247.
9a. Schipper H, Clinch J, Powell V. Definitions and conceptual
issues. In: Spilker B, ed. Quality of life assessments in
clinical trials. New York: Raven, 1990:1124.
9b. Ware JE Jr. Standards for validating health measures: definition and content. J Chronic Dis 1987;40(6):47380.
10. Torrance GW. Utility approach to measuring health-related
quality of life. J Chronic Dis 1987;40(6):593603.
11. Kaplan RM, Anderson JP, Wu AW, et al. The Quality of Wellbeing Scale. Applications in AIDS, cystic fibrosis, and
arthritis. Med Care 1989;27(3 Suppl):2743.
12. Gill TM, Feinstein AR. A critical appraisal of the quality of
quality-of-life measurements. JAMA 1994;272(8):61926.
13. Gliklich RE, Goldsmith TA, Funk GF. Are head and neck
specific quality of life measures necessary? Head Neck
1997;19(6):47480.
14. Allison PJ, Locker D, Wood-Dauphinee S, et al. Correlates of
health-related quality of life in upper aerodigestive tract
cancer patients. Qual Life Res 1998;7(8):71322.
15. List MA, Ritter-Sterr CA, Baker TM, et al. Longitudinal
assessment of quality of life in laryngeal cancer patients.
Head Neck 1996;18(1):110.
16. Moore C. Quality of life. Laryngoscope 1978;88(1 Pt 2
Suppl 8):878.
17. Morton RP. Life-satisfaction in patients with head and neck
cancer. Clin Otolaryngol 1995;20(6):499503.
18. Terrell JE. Quality of life assessment in head and neck cancer patients. Hematol Oncol Clin North Am 1999;13(4):
84965.

476

19.

20.

21.

22.

23.

24.

25.

26.

27.

28.

29.

30.

31.

32.

33.

34.

CANCER OF THE HEAD AND NECK

Mohide EA, Archibald SD, Tew M, et al. Postlaryngectomy

quality-of-life dimensions identified by patients and
health care professionals. Am J Surg 1992;164(6):
61922.
Terrell JE, Nanavati KA, Esclamado RM, et al. Head and neck
cancer-specific quality of life: instrument validation. Arch
Otolaryngol Head Neck Surg 1997;123(10):112532.
Gritz ER, Carmack CL, de Moor C, et al. First year after head
and neck cancer: quality of life. J Clin Oncol 1999;17
(1):35260.
Rogers SN, Lowe D, Brown JS, Vaughan ED. The University
of Washington head and neck cancer measure as a predictor of outcome following primary surgery for oral cancer.
Head Neck 1999;21(5):394401.
Huguenin PU, Taussky D, Moe K, et al. Quality of life in
patients cured from a carcinoma of the head and neck by
radiotherapy: the importance of the target volume. Int J
Radiat Oncol Biol Phys 1999;45(1):4752.
Logemann JA. The role of the speech language pathologist in
the management of dysphagia. Otolaryngol Clin North
Am 1988;21(4):7838.
Logemann JA, Bytell DE. Swallowing disorders in three
types of head and neck surgical patients. Cancer 1979;
44(3):1095105.
Rademaker AW, Logemann JA, Pauloski BR, et al. Recovery
of postoperative swallowing in patients undergoing partial
laryngectomy. Head Neck 1993;15(4):32534.
Lazarus CL, Logemann JA, Rademaker AW, et al. Effects of
bolus volume, viscosity, and repeated swallows in nonstroke subjects and stroke patients. Arch Phys Med Rehabil 1993;74(10):106670.
Pauloski BR, Logemann JA, Rademaker AW, et al. Speech
and swallowing function after anterior tongue and floor of
mouth resection with distal flap reconstruction. J Speech
Lang Hear Res 1993;36(2):26776.
Wilson KM, Rizk NM, Armstrong SL, Gluckman JL. Effects
of hemimandibulectomy on quality of life. Laryngoscope
1998;108(10):15747.
Lazarus CL, Logemann JA, Pauloski BR, et al. Swallowing
disorders in head and neck cancer patients treated with
radiotherapy and adjuvant chemotherapy. Laryngoscope
1996;106(9 Pt 1):115766.
Epstein JB, Emerton S, Kolbinson DA, et al. Quality of life
and oral function following radiotherapy for head and
neck cancer. Head Neck 1999;21(1):111.
List MA, D'Antonio LL, Cella DF, et al. The Performance
Status Scale for Head and Neck Cancer Patients and the
Functional Assessment of Cancer Therapy-Head and
Neck Scale. A study of utility and validity. Cancer 1996;
77(11):2294301.
List MA, Mumby P, Haraf D, et al. Performance and quality
of life outcome in patients completing concomitant
chemoradiotherapy protocols for head and neck cancer.
Qual Life Res 1997;6(3):27484.
List MA, Siston A, Haraf D, et al. Quality of life and performance in advanced head and neck cancer patients on concomitant chemoradiotherapy: a prospective examination.
J Clin Oncol 1999;17(3):10208.

35.
36.

37.

38.

39.

40.

41.

42.

43.

44.

45.

46.

47.

48.

49.

50.

Stoicheff ML. Voice following radiotherapy. Laryngoscope

1975;85(4):60818.
Lehman JJ, Bless DM, Brandenburg JH. An objective assessment of voice production after radiation therapy for stage
I squamous cell carcinoma of the glottis. Otolaryngol
Head Neck Surg 1988;98(2):1219.
Induction chemotherapy plus radiation compared with surgery
plus radiation in patients with advanced laryngeal cancer.
The Department of Veterans Affairs Laryngeal Cancer
Study Group. N Engl J Med 1991;324(24):168590.
DeSanto LW, Olsen KD, Perry WC, et al. Quality of life after
surgical treatment of cancer of the larynx. Ann Otol Rhinol Laryngol 1995;104(10 Pt 1):7639.
Terrell JE, Fisher SG, Wolf GT. Long-term quality of life
after treatment of laryngeal cancer. The Veterans Affairs
Laryngeal Cancer Study Group. Arch Otolaryngol Head
Neck Surg 1998;124(9):96471.
Hillman RE, Walsh MJ, Wolf GT, et al. Functional outcomes
following treatment for advanced laryngeal cancer. Part
IVoice preservation in advanced laryngeal cancer. Part
IILaryngectomy rehabilitation: the state of the art in the
VA System. Research Speech-Language Pathologists.
Department of Veterans Affairs Laryngeal Cancer Study
Group. Ann Otol Rhinol Laryngol Suppl 1998;172:127.
Deleyiannis FW, Weymuller EA Jr, Coltrera MD, Futran N.
Quality of life after laryngectomy: are functional disabilities important? Head Neck 1999;21(4):31924.
Finizia C, Hammerlid E, Westin T, Lindstrom J. Quality of life
and voice in patients with laryngeal carcinoma: a posttreatment comparison of laryngectomy (salvage surgery)
versus radiotherapy. Laryngoscope 1998;108(10):156673.
De Graeff A, de Leeuw RJ, Ros WJ, et al. A prospective study
on quality of life of laryngeal cancer patients treated with
radiotherapy. Head Neck 1999;21(4):2916.
Urken ML, Buchbinder D, Weinberg H, et al. Functional
evaluation following microvascular oromandibular reconstruction of the oral cancer patient: a comparative study of
reconstructed and nonreconstructed patients. Laryngoscope 1991;101(9):93550.
Moroi HH, Okimoto K, Terada Y. The effect of an oral prosthesis on the quality of life for head and neck cancer
patients. J Oral Rehabil 1999;26(4):26573.
Hurst PS. The role of the prosthodontist in the correction of
swallowing disorders. Otolaryngol Clin North Am
1988;21(4):77181.
Van Dam FS, Hilgers FJ, Emsbroek G, et al. Deterioration of
olfaction and gustation as a consequence of total laryngectomy. Laryngoscope 1999;109(7 Pt 1):11505.
Buntzel J, Kuttner K, Frohlich D, Glatzel M. Selective cytoprotection with amifostine in concurrent radiochemotherapy for head and neck cancer. Ann Oncol 1998;9(5):5059.
Zimmerman RP, Mark RJ, Tran LM, Juillard GF. Concomitant pilocarpine during head and neck irradiation is associated with decreased post-treatment xerostomia. Int J
Radiat Oncol Biol Phys 1997;37(3):5715.
Johnson JT, Ferretti GA, Nethery WJ, et al. Oral pilocarpine
for post-irradiation xerostomia in patients with head and
neck cancer. N Engl J Med 1993;329(6):3905.

Rehabilitation and Quality of Life Assessment in Head and Neck Cancer

51.

52.

53.
54.

55.

56.

57.

Ripamonti C, Zecca E, Brunelli C, et al. A randomized, controlled clinical trial to evaluate the effects of zinc sulfate
on cancer patients with taste alterations caused by head
and neck irradiation. Cancer 1998;82(10):193845.
Remmler D, Byers R, Scheetz J, et al. A prospective study of
shoulder disability resulting from radical and modified
neck dissections. Head Neck Surg 1986;8(4):2806.
Ewing M, Martin H. Disability following radical neck dissection. Cancer 1952;5:8739.
Chaplin JM, Morton RP. A prospective, longitudinal study of
pain in head and neck cancer patients. Head Neck 1999;
21(6):5317.
Chua KS, Reddy SK, Lee MC, Patt RB. Pain and loss of
function in head and neck cancer survivors. J Pain Symptom Manage 1999;18(3):193202.
Keefe FJ, Manuel G, Brantley A, Crisson J. Pain in the head
and neck cancer patient: changes over treatment. Head
Neck Surg 1986;8(3):16976.
Talmi YP, Waller A, Bercovici M, et al. Pain experienced by
patients with terminal head and neck carcinoma. Cancer
1997;80(6):111723.

58.

59.
60.

61.

62.

63.

64.

477

Davies AD, Davies C, Delpo MC. Depression and anxiety in

patients undergoing diagnostic investigations for head
and neck cancers. Br J Psychiatry 1986;149:4913.
Ferrence RG, Johnson FG. Factors affecting reported rates of
self-injury. Life Threat Behav 1974;4(1):5466.
De Boer MF, Van den Borne B, Pruyn JF, et al. Psychosocial
and physical correlates of survival and recurrence in
patients with head and neck carcinoma: results of a 6-year
longitudinal study. Cancer 1998;83(12):256779.
De Boer MF, McCormick LK, Pruyn JF, et al. Physical and
psychosocial correlates of head and neck cancer: a review
of the literature. Otolaryngol Head Neck Surg 1999;120
(3):42736.
Hammerlid E, Persson LO, Sullivan M, Westin T. Quality-oflife effects of psychosocial intervention in patients with
head and neck cancer. Otolaryngol Head Neck Surg 1999;
120(4):50716.
Gamba A, Romano M, Grosso IM, et al. Psychosocial adjustment of patients surgically treated for head and neck cancer. Head Neck 1992;14(3):21823.
Monga U, Tan G, Ostermann HJ, Monga TN. Sexuality in
head and neck cancer patients. Arch Phys Med Rehabil
1997;78(3):298304.