using quality of life questionnaires in clinical practice

Originally, quality of life questionnaires were used exclu-
sively for research. More recently, there has been growing
interest in their possible contribution to routine clinical care.
Studies have shown that quality of life questionnaires can
be used in clinical practice to facilitate communication and
identify problems that otherwise might go undetected. In a
study by Detmar and colleagues,
chemotherapy patients
completed the questionnaires in the clinic before seeing
their physicians, so that the physicians had the scores in
hand at the time when they met with the patients. Quality
of life issues were discussed more frequently by patients
who completed the questionnaires, as compared to patients
who did not. In addition, the physicians identified a larger
proportion of patients with moderate or severe health prob-
lems when they had the questionnaires. All physicians and
87% of the patients thought the questionnaires facilitated
communication and should continue to be used.
 In another
study, Velikova and colleagues tested computerized admin-
istration of quality of life instruments in oncology clinical
practice. This prospective study (28 medical oncologists
and 286 patients with cancer) demonstrated that providing
quality of life data to clinicians resulted in a more frequent
discussion of symptoms, without prolonging the clinical
encounter. Improvement of quality of life was associated
with the use of quality of life data, discussion of pain, and
role function. These studies demonstrate that quality of life
instruments can provide useful additional information to
clinicians, increase the efficiency of the clinical encounter,
and result in improved outcomes for patients. Halyard and
Ferrans
 recently published guidelines for using quality of
life instruments in oncology clinical practice.

Nursing supportive care

Quality of life information can play an important role in
revealing needs for supportive care, both during treatment
and afterward. For example, Ganz and colleagues exam-
ined the quality of life in 558 patients with breast cancer
during the period of time immediately after the completion
of treatment, when women need to move beyond cancer
to reestablish their normal life patterns. They found that
women experienced breast sensitivity, muscle stiffness, aches
and pains, difficulty concentrating, and decreased energy,
regardless of the type of treatment (mastectomy, lumpec-
tomy, chemotherapy). These problems were all associated
with poor physical functioning and emotional well-being.
In addition, sexual functioning was worse for women who
received chemotherapy, regardless of whether they under-
went a lumpectomy or mastectomy. After chemotherapy,
women experienced difficulties with sexual interest, lubrica-
tion, and pain with intercourse. These results are important
because they target areas for intervention to help women
make a smoother transition to normal life.
Quality of life issues also have been identified for long-
term survivors who remain free of disease. For example,
some breast cancer survivors—particularly those with
mastectomies or lymphedema—continue to experience
significant problems with body image, sex life, depression,
and symptoms of posttraumatic stress disorder years after
treatment.

 In addition, long-term survivors of various
cancers have been found to experience many of the same
problems—namely, chronic fatigue, fear of recurrence
and death, infertility, issues of control and independence,
altered meaning of health, and uncertainty about the
future.
Nurse-delivered interventions have been instituted to
address some of these quality of life issues. For example,
cancer outpatients diagnosed with major depressive dis-
order received a multicomponent intervention delivered
by nurses.
The intervention was effective, in that 38.5%
fewer patients in the treatment group were still depressed
at the final 6-month outcome, as compared with patients
who received the usual care. In another study, breast cancer
patients, who were 3 to 4 months postdiagnosis, received
10 sessions of cognitive-behavioral therapy by telephone.

The women who received the therapy had less anxiety and
confusion at the final 10-month outcome, as compared to
the control group.

negative effects of adjuvant therapy

Quality of life concerns regarding toxicity and long-term
disability have led to changes in use of adjuvant therapy.
A classic example is the use of cranial radiation for cen-
tral nervous system prophylaxis for acute lymphoblastic
leukemia (ALL) in children, which at one time received
widespread use. Hill and colleagues
conducted a study
that demonstrated that cranial radiation contributed to
deficits in attention and overall intellectual functioning in
these children. Two groups of survivors of childhood ALL
were compared: one group had been treated with 24 Gy of
cranial radiation and intrathecal methotrexate; the other
had received systemic and intrathecal methotrexate but
no cranial radiation. The group who had received cranial
radiation had significantly worse academic achievement
and greater psychological distress. As a result, intensive
efforts were made to find effective alternatives to cranial
radiotherapy to prevent recurrence or relapse, such as
high-dose systemic chemotherapy and intensive intrathe-
cal therapy.

TWO STANDARD THERAPIES WITH SIMILAR SURVIVAL OUTCOMES

When two treatments produce similar outcomes in survival,
information about differences in quality of life outcomes
can help determine the best choice. An example can be
found in treatment for localized prostate cancer, for which
there is continuing controversy regarding whether radical
prostatectomy or radiation therapy provides superior out-
comes in older men.
 In an early study comparing quality
of life outcomes for men receiving radical prostatectomy
or radiation therapy, Yarbro and Ferrans found that
those treated by surgery had significantly worse urinary
and sexual functioning. Protective pads or adult diapers
were worn daily by 32% of the men in the surgical group,
as compared with only 6% of the radiation group. Ability
to have an erection was reported to be very poor for 88%
of the surgical group and for only 46% of the radiation
group. In contrast, the radiation group had worse bowel
functioning due to radiation damage to the rectal mucosa,
although the differences between groups were smaller in
this area. Diarrhea and cramping pain were problems for
only a few men. Similar findings later were reported in a
nationwide Prostate Cancer Outcomes Study
as well as in a prospective study.
These studies provide impor-
tant information for older men to consider as they decide
which treatment to pursue for prostate cancer.

USING QUALITY OF LIFE INFORMATION IN CANCER CARE

In large clinical trials, quality of life data have played a

crucial role in the selection of therapeutic agents that have

become the standard of care.

In addition, information

about quality of life is also important for planning treat-

ment, decision making, and providing supportive care.

Table lists examples of ways that quality of life informa-

tion can be valuable in clinical practice. Such information

is useful for both clinicians and patients, as well as to pro-

mote communication among them. Oncology nurses play

a critical role in providing quality of life information to

patients, so that they can make better-informed decisions

about their treatment. Examples of quality of life studies

that have contributed to cancer care are described in the

following sections.

Uses of Quality of Life Information in Cancer Care

   Determine whether a new therapy is preferable to standard

therapy

   Compare two standard therapies having similar survival

outcomes

   Identify the long-term negative effects of therapy, when

survival time is long

   Discover whether a therapeutic regimen is better than

supportive care only, when survival time is short

   Determine the negative effects of adjuvant therapy

   Identify the need for supportive care

   Target problems and facilitate communication in clinical

practice

QUALITY OF LIFE AS A PROGNOSTIC INDICATOR

It has generally been presumed that the “soft,” subjective
measures of quality of life are inferior to “hard,” clinical
indicators, such as histology and weight loss. However,
as the sophistication of quality of life instruments has
improved over time, so has the ability to provide informa-
tion of real clinical importance. In fact, patient’s ratings of
their quality of life before treatment have been found to be
predictive of length of survival—in some cases with even
more predictive power than traditional clinical indicators.
There are 22 studies in which patient’s ratings of their
quality of life before treatment began (at baseline) were
found to be predictive of survival.
 These findings also were not limited to a single type of cancer, but were found
across 9 types (lung, breast, esophagus, head and neck,
bladder, cervical, pancreatic, colorectal, and prostate can-
cer), which provides greater confidence in the findings.
The quality of life scores that were predictive of survival
were global quality of life, symptoms (pain, fatigue,
anorexia, dyspnea), and functioning (physical, cognitive,
emotional, social, and role function). Satisfaction with life
was even predictive of survival in four studies. Because
the studies used different instruments to measure quality
of life, and patients received a wide variety of treatment
regimens, they increase our confidence that a relationship
between pretreatment quality of life and survival actually
exists.
In some cases, the quality of life scores were even more
powerful predictors than standard clinical indicators. For
example, in inoperable nonsmall cell lung cancer treated
by radiotherapy, Langendijk et al found that global quality
of life was the strongest prognostic factor of all; stronger
than node classification, weight loss, or performance status.
Additional clinical variables among the studies that were
found to be less predictive than quality of life scores were
tumor stage, disease measurability, age, gender, time since
diagnosis, tumor location, number of tumor sites, tumor
type, comorbidity, prior radiotherapy, hemoglobin level,
bone metastasis, estrogen and progesterone receptor status,
and disease-free interval.

On the basis of the findings such as these, Ganz et al6
recommended that patient-rated quality of life assessment
should be obtained as an integral part of cancer manage-
ment to serve as a guide to patient needs, as an outcome
measure, and as a prognostic variable for survival time.

Osoba has even suggested that pretreatment quality of life
ratings could be used as an eligibility criterion and stratifi-
cation variable in clinical trials.

Introduction Quality of Life as an Outcome of Cancer Care

Quality of life is a concept that uniquely belongs to nurs-
ing science and practice. Nurses traditionally have viewed
patients from a holistic perspective, focusing not only on
the length of life but also on the quality of life. Over the
past 30 years, nurse scientists have been among the front-
runners in the development of quality of life as an important
gauge for evaluating healthcare outcomes. Recognizing the
fact that information beyond tumor response and survival
time was needed, much of the ground-breaking work in
the assessment of quality of life has been accomplished in
oncology. In 1985, the US Food and Drug Administration
identified  ed quality of life as a key parameter for approval of
new anticancer drugs for advanced metastatic disease.
In 1988, improvement of quality of life was identified  ed as one
of the highest priorities of the Cancer Therapy Evaluation
Program of the National Cancer Institute (NCI).
 Quality of life components now are included in many of the clinical
trials conducted by the cancer cooperative groups in the
United States, Canada, and Europe. In fact, the Canadian
NCI requires quality of life end points to be included in all
phase III clinical trials.
In April 2006, the importance of
quality of life was further recognized by the American NCI,
by instituting the Symptom Management and Health-
Related Quality of Life Steering Committee, within its
Coordinating Center for Clinical Trials.

Quality of life issues, however, are not limited to clinical
trials of therapeutic agents. Such information is critically
important for the entire spectrum of cancer care, including
palliative care, end-of-life care, and long-term survivorship.
Oncology nurses focus on all aspects of life affected by can-
cer and treatment, such as physical symptoms, treatment
toxicities, mental and physical functioning, body image,
psychological state, work and role responsibilities, social
and family life, and spiritual concerns. Because the con-
cept of quality of life is a multidimensional construct that
encompasses the whole of life, it is a useful parameter for
outcomes important in oncology nursing.

NEW THERAPY and STANDARD THERAPY

A classic use for quality of life data is to determine whether
a new therapy is preferable to the standard therapy. The
gold standard for these comparisons is the phase III clini-
cal trial. An example of the importance of quality of life in
a phase III study can be seen in the head-to-head compari-
son of a new therapy, imatinib (Gleevec), with the stan-
dard interferon-alpha plus low-dose cytarabine in patients
with newly diagnosed chronic myeloid leukemia.
After 12 months of treatment, the imatinib group had a signifi-
cantly better quality of life than the interferon/cytarabine
group. In particular, the imatinib group had better daily
functioning, less fatigue, fewer cognitive problems, and
better social functioning. In fact, the imatinib group actu-
ally had an increase in emotional well-being as compared
to base-line, as patients felt better able to cope with ill-
ness, and were less worried and sad. In addition, patients
who crossed over to imatinib experienced an improvement
in quality of life, as compared with patients who contin-
ued with the interferon/cytarabine regimen. As a result,
these findings contributed to imatinib becoming the new
standard therapy for newly diagnosed chronic myeloid
leukemia.

CANCER LONG-TERM NEGATIVE EFFECTS OF THERAPY

Quality of life information can be critically important
for decision making when treatment does not clearly pro-
vide a survival advantage. For example, older men with
slow- growing, early prostate cancer can choose “watch-
ful waiting” (monitoring with no treatment), rather than
prostatectomy or radiation, based on the assumption that
comorbid conditions will end their lives before the can-
cer will. A randomized trial of watchful waiting vs radi-
cal prostatectomy found that all-case mortality was not
significantly different in the two groups, even though the
rate of death from prostate cancer was slightly lower in the
prostatectomy group.
In a companion study, quality of life
outcomes were assessed an average of 4 years after random-
ization.
The prostatectomy group had significantly greater
urinary leakage and compromised sexual function. These
results are important for older men to consider when diag-
nosed with prostate cancer, so that they can make informed
decisions regarding treatment.

The term health-related quality of life commonly is used to focus on quality of life in the context of illness and treat-ment

The term health-related quality of life commonly is used to
focus on quality of life in the context of illness and treat-
ment. Because this chapter focuses on quality of life as an
outcome of cancer care, it addresses health-related quality of
life. The term “health-related quality of life” is used to draw
a line between the facets of life that are primarily health
related and those that are not. Non-health-related quality of
life typically is thought of as cultural, political, or societal
types of issues that fall within the purview of fields such as
economics, demography, and sociology.
However, because
cancer has a pervasive infiuence on a person’s life, all domains
of quality of life become “health related” in this context. It is
interesting to note that the World Health Organization has
chosen to define quality of life in a comprehensive manner:
An individual’s perception of their position in life in the
context of the culture and value systems in which they
live and in relation to their goals, expectations, standards,
and concerns. It is a broad- ranging concept affected in a
complex way by the person’s physical health, psychological
state, level of independence, social relationships, and their
relationship to salient features of their environment.