Improving the Chemotherapy Experience

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 planned reward.

• 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 third, respectively.

Emotional Impact of Chemotherapy

Depression and emotional stress affected a patient’s ability to manage chemotherapy:

• 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 courses—when 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.

• Women’s 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.

Participant Demographics

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.