Cancer patients' expectations of experiencing treatment-related side effects: A University of Rochester Cancer Center-Community Clinical Oncology Program study of 938 patients from community practices

BACKGROUND. Adequate management of treatment-related side effects is important for patients and challenging for clinicians. Side effects generated by various treatments have been characterized reasonably well. However, to the authors' knowledge, less is known regarding what patients expect to experience regarding these side effects and how patient characteristics are related to these expectations. METHODS. Patients with cancer (n = 1015 patients) from 17 Community Clinical Oncology Program (CCOP) institutions affiliated with the University of Rochester Cancer Center CCOP Research Base were surveyed regarding their expectations of experiencing side effects associated with cancer treatment, with 938 patients providing evaluable data. Patients responded to the item, "Indicate your expectations of having this side effect" for 12 common side effects. Patients rated their expectations using a 5-point Likert scale, from 1 ("I definitely will not have this") to 5 ("I definitely will have this"). RESULTS. The median number of symptoms expected (characterized by any value other than one) was nine. The six most expected symptoms were fatigue, nausea, sleep disturbance, weight loss, hair loss, and skin problems. Patients age > 60 years expected to have fewer symptoms than younger patients; female patients expected more side effects than male patients; and patients who had some college education expected more side effects than patients who were high school graduates or had not completed high school. CONCLUSIONS. Patients with cancer clearly exhibit expectations regarding treatment-related side effects; and age, gender, and education level appear to influence these expectations. Further careful characterization of patient expectations and how expectations relate to experience may lead to earlier and more effective management of side effects.