Participants
A total of 207 patients were included in the analyses. Their regional distribution reflected the general Japanese population. Mean age was 50.8 years (range 26–69 years), and approximately 80% of patients did not experience recurrence or metastasis (Table 1). Fifty-six patients (27.1%) were currently receiving chemotherapy; all others had a history of chemotherapy within the previous 5 years. Most patients received chemotherapy via intravenous infusion. Approximately 30% of patients received therapies targeting cell surface proteins and genes. Chemotherapeutic agents used in at least 10 patients were the following: docetaxel (n = 45); fluorouracil, epirubicin, and cyclophosphamide (FEC) (n = 33); paclitaxel (n = 29); nab-paclitaxel (n = 17); epirubicin and cyclophosphamide (EC) (n = 17); docetaxel and cyclophosphamide (TC) (n = 16); doxorubicin and cyclophosphamide (AC) (n = 10), all injections; and capecitabine (n = 12), an oral formulation.
Table 1 Background of patients, physicians, and nurses A total of 185 physicians including those practicing in breast oncology/surgery (81 [43.8%]), general surgery (81 [43.8%]), and oncology (23 [12.4%]) responded to the survey. Affiliated institutions included university hospitals (24.3%), designated cancer care hospitals (29.2%), and general hospitals (42.2%) (Table 1).
A total of 150 nurses were included in the analyses. The nurses worked in hospital wards (67 [44.7%]), general outpatient units (48 [32.0%]), outpatient chemotherapy units (45 [30.0%]), and breast cancer outpatient units (13 [8.7%]). Some nurses had multiple affiliations (Table 1).
Physical and psychological concerns
Regarding physical concerns (side effects) experienced by patients during chemotherapy, the most distressing was hair loss, followed by skin and nail problems, weariness/fatigue, taste disorder, numbness in hands and legs (peripheral neuropathy), and edema (Fig. 1). The severity of distress from nausea/vomiting was not high. Side effects most concerning to physicians were fever, followed by numbness in hands and legs (peripheral neuropathy), nausea/vomiting, skin and nail problems, loss of appetite, and hair loss. Nurses were most concerned about hair loss, also top-ranked by patients, followed by numbness in hands and legs (peripheral neuropathy), and nausea/vomiting, both of which were of high concern to physicians.
When asked about side effects most desirable to avoid when selecting treatment, nausea/vomiting and hair loss were ranked high by both patients and nurses. However, physicians most highly ranked pain, followed by nausea/vomiting, then fever; hair loss ranked low (data not shown). Skin and nail problems were a major concern for nurses but not for patients and physicians (data not shown).
Regarding psychological concerns experienced during chemotherapy, patients were highly concerned about “changes in appearance and mood,” “fear for metastases and recurrence,” “uncertainty about the future,” and “vague anxiety and depressed mood.” This was similar to the results of physicians and nurses (Fig. 1). Concerns about therapeutic response, such as “death and anxiety about dying” and “anxiety about failure to achieve expected treatment responses” were ranked similarly high in patients, physicians, and nurses.
The results of rank correlation for concern analyzed by Spearman’s rank correlation coefficient (Fig. 2) demonstrated that the correlation between patients and physicians was lower (0.47) than that between nurses and patients (0.83) and that between physicians and nurses (0.76). This was mainly caused by the significantly low correlation between patients and physicians (0.07) regarding physical concerns (side effects) and was greatly affected by the difference in ranking of “hair loss” between the two groups. The correlation in psychological concerns was relatively high between patients and physicians (0.69).
Priority of treatment attributes for future treatments
For the questions regarding the priority of treatment attributes important in determining future treatments for the patient, approximately 47% of patients chose items related to QoL (QoL or mild side effects) and approximately 40% of patients chose items related to treatment response (longer survival or tumor reduction) (Online Resource 2). Approximately 51% and 47% of physicians chose items related to QoL and treatment response, respectively, showing a similar trend to patients. A high proportion (82%) of nurses chose items related to QoL.
Information received or expected to have been received by patients
Information related to chemotherapy that patients perceived as having been received included “treatment-associated side effects” (97%), “drugs to reduce treatment-associated side effects” (86%), “all available treatments” (78%), and “risk-benefit balance of treatment” (71%). These informational items were all expected to be received by patients and perceived as provided by physicians (Fig. 3). However, some informational items were expected to be received by patients but were perceived as not having been received. These items included information on “treatment cost” (expected 84% vs received 60%), “recovery period” (78% vs 57%), “outlook for future treatments and research” (52% vs 70%), “treatments for pain relief” (79% vs 49%), “cost other than treatment and available financial support” (71% vs 41%), and “professional (work-related) and social rehabilitation” (53% vs 29%). These informational items were perceived as having been provided by most physicians and nurses.
Treatment decision-making
Most physicians and nurses thought that treatment decisions should be made either through discussion between patients and physicians or by patients with consideration of the opinion of their treating physician. However, a higher percentage of patients (25%) thought that treatment should be determined by physicians (data not shown). This trend was higher in elderly patients (data not shown).
Regarding the most desirable person for consultation regarding chemotherapy, most patients thought that the physician was the only person who should be consulted (Online Resource 3). However, physicians and nurses both wanted patients to seek consultations with nurses and pharmacists in addition to physicians.