Breast cancer patients on adjuvant chemotherapy report a wide range of problems not identified by health-care staff

BACKGROUND: Adjuvant chemotherapy for primary breast cancer is associated with significant side effects. The aims of this study were (1) to compare health-related quality of life (HRQL) in patients undergoing adjuvant chemotherapy to patients not on chemotherapy and (2) to compare these results against a survey investigating health-care professionals' knowledge of HRQL.

METHODS: Patients on adjuvant cyclophosphamide, methotrexate, fluoracil chemotherapy were compared to 'low-risk' patients not on chemotherapy ('control group'). A questionnaire including the EORTC QLQ-C30, the Hospital Anxiety and Depression Scale (HADS), and the DBCG 89 Questionnaire was administered six times during a 2-year period. Forty-six experienced health-care professionals were asked which quality-of-life issues they thought were affected by adjuvant chemotherapy.

RESULTS: After 2 years, 159 of 242 patients on chemotherapy and 148 of 199 patients in the control group were alive and recurrence-free and had completed all questionnaires. Worse HRQL during chemotherapy was seen, as had been previously suggested, for 23 of 30 variables. A number of the health-care professionals had not indicated patients to have these side effects. Several side effects persisted after the chemotherapy.

CONCLUSIONS: This study provides the most comprehensive description of HRQL in adjuvant therapy to date. The discrepancy between patients and doctors/nurses suggests that patients have been insufficiently informed about the impact of chemotherapy on quality of life. The results of this study provide a basis for information that can be given to patients, and indicate that the care offered to patients in chemotherapy should seek to prevent, identify, and alleviate a very broad range of problems.