The Chemotherapy Experiences national patient survey was
conducted by Roper Starch Worldwide on behalf of the Oncology Nursing
Society (ONS) and Amgen between December 3, 1998, and January 7,
1999. The survey was designed to evaluate 500 patients
physical, psychological, and emotional experiences during
chemotherapy, as well as the resources that they found most valuable
in managing these experiences. Key findings follow.
Patient Concerns Prior to Chemotherapy
Patients are as concerned about the side effects of chemotherapy and
the treatment experience as they are about surviving cancer:
Close to half (40%) of patients said that their biggest concern prior
to chemotherapy was side effects/how I would feel
physically. Another 32% cited whether I would survive
cancer as their greatest worry.
The greatest sources of stress prior to receiving chemotherapy were
nervousness about potential side effects (61%), nervousness about
what treatments would be like (61%), and not knowing what to expect (53%).
Preparation for Chemotherapy
More thorough and appropriate preparation could positively affect
patients chemotherapy experiences:
Survey respondents were nearly split in terms of whether they were
adequately prepared for chemotherapy. However, 77% of those who
reported that they coped extremely well with treatment
said that their doctor adequately prepared them for their experience
vs 52% of those who reported not coping extremely well.
Among patients who wanted to stop chemotherapy, only 42% said that
they felt adequately prepared by their doctor; 75% of those who did
not want to stop treatments felt that their preparation was adequate.
Patient Resources: Those Valued and Those Utilized
Despite sophisticated communication vehicles and resources (eg, the
Internet, support groups), patients report that prayer is still their
most valuable source of support during chemotherapy.
Among patients who prepared for chemotherapy, 71% reported that they
did so by praying, and 75% of these said that they found prayer to be
extremely helpful in getting them through treatment.
Aside from praying, other activities that patients considered to be
extremely helpful in preparing them for chemotherapy
were: (1) Talking to my doctor (82% of patients used this resource,
and 58% found it to be extremely helpful); (2) talking to a
clergy-member (24% used this resource; 53% of those found it to be
extremely helpful); (3) talking to a doctor other than my own for a
second opinion (32% used this resource; 49% of those found it
extremely helpful); (4) talking to family members/friends who had
been through chemotherapy (47% used this resource; 48% of those found
it extremely helpful); and (5) setting a goal or planned reward (15%
used this resource; 45% of those found it extremely helpful).
Based on the above findings, two activities appear to be
underutilized: talking with a clergy member and setting a goal or
Most patients said that, among medical professionals, a nurse was the
most valuable source of information and support during chemotherapy
(aside from their doctor); 65% of survey respondents who relied on a
nurse reported that he or she was extremely helpful.
Incidence and Impact of Physical Side Effects
The most common side effects patients reported experiencing were
fatigue (75%), nausea (61%), hair loss (59%), low white blood cell
count (49%), and depression/emotional stress (35%).
Half of respondents said that the period during which they developed
side effects was a stressful time for them.
Patients said that hair loss was the physical effect that they told
others was most difficult. Nausea and infection ranked second and
Emotional Impact of Chemotherapy
Depression and emotional stress affected a patients ability to
Approximately one-third (35%) of patients reported experiencing
depression/emotional stress during chemotherapy.
Of those who reported wanting to stop chemotherapy at some point, 60%
experienced depression/emotional stress, as compared with 27% who
said that they did not want to stop treatments.
Incidence and Effect of Treatment Delays
Despite the availability of a blood cell growth factor, a significant
number of patients still experience low white blood cell counts
(neutropenia) and related delays in their chemotherapy treatment schedule:
A total of 49% of patients reported experiencing neutropenia; 37% of
these experienced a delay in chemotherapy treatment as a result.
Of the 25% of respondents who experienced a delay in their treatment,
79% said it was due to neutropenia and/or infection.
Of those who experienced neutropenia-related delays, 37% found that
delay to be extremely or somewhat stressful,
and 31% of these patients said that the delay made them want to quit chemotherapy.
Among patients who reported that having to delay treatment was
troubling/stressful, the majority (64%) said that the reason for that
feeling was that they were looking forward to completing chemotherapy.
Timing of Experiences and Resource Needs
Patients physical and emotional experiences could be improved
by providing targeted support at key points during chemotherapy:
From a list of five situations, the greatest percentage (23%) of
respondents ranked thinking about/preparing for my first
[chemotherapy] session as extremely stressful.
Once they experienced their first side effects, 31% of patients said
that they dreaded the next treatment session.
Several dangerous side effects do not occur until the middle of
chemotherapy courseswhen patients may be feeling most
overwhelmed (see below). Among patients who reported experiencing low
white blood cell counts and infection, 20% and 14%, respectively,
experienced these effects at the beginning of chemotherapy. These
numbers increased to 43% (neutropenia) and 44% (infection) during the
middle of the course.
Among patients who reported wanting to stop chemotherapy at some
point during their first course, feeling like no one understood
what I was going through was a major reason early in treatment.
Later in the course, feeling unable to manage my day-to-day
responsibilities was cited as a major reason why patients
wanted to stop.
The greatest percentage of patients (33%) said that talking to
someone who had been through chemotherapy was the one type of
support that they would liked to have received but did not.
Men vs Women
Men and women responded differently to both the chemotherapy
experience and available resources:
Women experienced all of the major side effects more often than did
men and were emotionally affected by side effects to a greater degree.
Womens stress was increased by the fact that they worried more
about how their side effects prevented them from fulfilling their
family responsibilities (41%, vs 19% of men).
Men were more likely to rely on their doctors as their primary source
of information and support during chemotherapy. Women used a broader
range of resources, relying on doctors less than men.
The greatest percentages of survey respondents: (1) completed one
course of chemotherapy within the past 5 years; (2) had four-to-six
sessions in their first chemotherapy course; (3) were diagnosed with
breast cancer (60%), followed by prostate cancer (11%), colon (10%)
cancer, lymphoma (9%), and lung (4%) cancer. The remaining 6% of
patients were diagnosed with a wide variety of other cancers. The
median age of survey respondents was 65 years.