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.

How patients experience endocrine therapy for breast cancer: an online survey of side effects, adherence, and medical team support

“…In a recent nationwide survey of oncology patients, respondents reported being more likely to stop therapy if they experienced unexpected side effects, and approximately one-third said they wished they had known more about treatment toxicities [59]. This demonstrates the importance of continued and serial communication between the medical team and the patient.…”

Toward Improving Patients’ Experiences of Acute Toxicity From Breast Radiotherapy: Insights From the Analysis of Patient-Reported Outcomes in a Large Multicenter Cohort

“…[5][6][7][8] In one recent survey, 19% of patients with breast cancer felt they lacked sufficient information about the adverse effects to expect, and 32% indicated experiencing adverse effects that they wished they had known more about. 9 Although some of this might be remediated by greater attention to physician-patient communication, the ability to fully inform patients is limited by gaps in the existing literature. Currently, there is a paucity of information that characterizes the experiences of radiation toxicity from the perspective of the patients themselves.…”

“Why am I still suffering?”: Experience of long-term fatigue and neurocognitive changes in oropharyngeal cancer survivors following (chemo)radiotherapy

“…Similar to other studies in cancer patients, there is a perceived lack of adequate information exchange, with improved pre-treatment counselling and information dissemination regarding chronic fatigue and the possibility of neurocognitive impairment being required [59] , [60] , [61] . For many participants, their experiences differed significantly from their expectations.…”