Abstract
Scientific advances in immuno-oncology have contributed to improved survival of lung cancer patients, and immunotherapy is part of the daily clinical practice. Due in part to these hopeful results, immunotherapy is a relatively popular subject in mass media. The scientific community has undertaken significant efforts to educate and inform patients about several aspects of immunotherapy, particularly regarding some common misconceptions, but the results are inconclusive and anecdotal. CareAcross, a digital multilingual platform which provides personalized, evidence-based support to cancer patients undertook the initiative to investigate the level of education and information of cancer patients regarding immunotherapy. From June 2020 to February 2021, specific questions were posed to the members of the CareAcross online platform. Members were predominantly from the UK, France, Spain, Italy or Germany, and were diagnosed with lung, breast, colorectal or prostate cancer. Their responses were correlated with other characteristics of their health profile and cancer journey. This analysis focuses on lung cancer patients, and compares the perceptions of those who have received immunotherapy vs those who have not. Among 5589 responders, 1131 had lung cancer; 241 had received immunotherapy (21%; henceforth “IO-treated”) while the rest had not (890 or 79%; henceforth “non-IO-treated”). Regarding the mechanism of action, 29% of patients responded either “do not know” or ”not sure”; non-IO-treated were the least aware subgroup (33% vs 11% of IO-treated). Regarding the timing of action, 28% of patients reported knowing that immunotherapy starts working some time after treatment initiation (41% of IO-treated vs 24% of non-IO-treated). 44% of patients could not respond (22% of IO-treated vs 50% of non-IO-treated). Most patients (77%) were confident that chemotherapy causes more side-effects than immunotherapy (86% of IO-treated vs 74% of non-IO-treated) and only 3% of all believed the opposite. The main difference was observed regarding ignorance: 8% of IO-treated were unaware, compared to 23% of non-IO-treated. When comparing immunotherapy’s toxicity with that of targeted therapies, more than half of all subgroups did not know. While all subgroups believed that immunotherapy was the least toxic of the two, IO-treated were the most ambivalent, resulted in a smaller gap (with 20% considering immunotherapy more toxic than targeted therapy, vs 24% for the opposite). Regarding the perception of costs to the healthcare system, 21% believe that immunotherapy costs more than targeted and chemotherapy (35% of IO-treated vs 17% of non-IO-treated). Each of the other two modalities were considered the most expensive by 12% of each subgroup, across the board. The remainder was accounted for by those who did not know (50% of all; 40% of IO-treated vs 53% of non-IO-treated) or believe they cost the same (5%; 3% of IO-treated vs 5% of non-IO-treated). The overall understanding of immunotherapy, its mechanism of action, impact, and costs, is still relatively low, even among lung cancer patients who have received such treatment. Given immunotherapy’s growing applicability, these findings highlight the need for broader, continuous and frequently updated patient education initiatives. These can improve knowledge, instill confidence, reduce misconceptions, and enhance patient-clinician collaboration.
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