Changing patient perceptions of the side effects of cancer chemotherapy

BACKGROUND: Quality-of-life (QoL) issues have become increasingly important as the number of newly diagnosed patients with cancer increases and survival improves. In 1983, Coates et al. reported a survey of patient perceptions of the side effects of cancer chemotherapy and showed the importance of including patient feedback for the accurate assessment of QoL (Eur J Cancer Clin Oncol. 1983;19:203-208.). The authors carried out a similar survey in 100 patients with cancer with the objectives of 1) investigating the changes in patient perceptions that have occurred and 2) evaluating the impact of new treatments on the profile of chemotherapy side effects among patients receiving anticancer drugs. METHODS: One hundred patients attending the outpatient Medical Oncology Department of the Pitié Salpêtrière Hospital Group were surveyed between August 1998 and February 2000 by trained interviewers who were blinded to the patients' treatment. Patients identified all side effects associated with their treatment using a set of 45 cards that named physical side effects (Group A) and a set of 27 cards that named nonphysical side effects (Group B), and the patients ranked these side effects according to severity. The top 5 cards from each group were then combined, and the resulting 10 cards were rated again by severity, regardless of group. Results were analyzed for the entire cohort and for demographic, social, and clinical subgroups. RESULTS: The participants included 65 women and 35 men; the most common malignancies were breast carcinoma (40 patients), gastrointestinal carcinoma (19 patients), lung carcinoma (7 patients), and ovarian carcinoma (9 patients). Patients rated affects my family or partner as the most severe side effect, alopecia was second, and fatigue was the third most severe. Effects on work or home responsibilities, effects on social activities, and loss of interest in sex were ranked fourth, fifth, and sixth, respectively. The results contrasted with those of Coates et al., in which affects my family or partner was ranked 10th, and fatigue was ranked 8th. CONCLUSIONS: Patient perceptions of the side effects of cancer chemotherapy have changed markedly. In the current study, fatigue and psychosocial QoL concerns predominated, compared with emesis, nausea, and negative reactions to the treatment visit in the original survey. The current findings are consistent with the progress that has been made in reducing certain chemotherapy-associated toxicities. Fatigue, however, although it often is related to anemia and is treatable with recombinant human erythropoietin, remains a major concern. The emotional, social, and sexual consequences of cancer treatment present continuing challenges in efforts to optimize QoL and to develop effective supportive care.