Nationwide survey of patients’ perspectives regarding their radiation and multidisciplinary cancer treatment experiences

Abstract

PURPOSE The perspectives of patients with cancer about their treatment can inform interventions to improve the approaches of treating oncologists and experiences of future patients. We sought to identify areas where current toxicity management, informed consent processes, and physician-patient communication merit improvement. METHODS In a Web-based survey administered from March to May 2018 using quota-based sampling to draw a nationwide sample of US patients with cancer treated with radiotherapy within the past 5 years, we evaluated patient perceptions of adequacy of information about adverse effects, severity of actual adverse effects experienced, and experiences divergent from expectations. RESULTS Among 403 respondents, 18% felt inadequately informed about what adverse effects to expect from radiotherapy, and 37% experienced radiation adverse effects that they wished they had known more about. Similar proportions of patients treated with chemotherapy (36%) and surgery (34%) experienced toxicities related to those treatments that they wished they had known more about. Patients who noted their adverse effects to be minimal versus severe were significantly more likely to feel informed about radiotherapy adverse effects (odds ratio, 13.05; 95% CI, 5.6 to 30.38; P, .001). Across all evaluated measures, a majority of patients indicated that they did not experience the potentially anticipated radiotherapy adverse effect or that it was the same as or better than expected. CONCLUSION This study suggests that experiences with radiation adverse effects generally are congruent with expectations. Nevertheless, improvement of pretreatment counseling across all cancer therapy modalities seems warranted to improve informed decision making and treatment experiences.