Background It is critical patients understand the terms used to describe oncology treatments; however, even basic chemotherapy terminology can be misunderstood. Rural communities tend to have especially low levels of health literacy compared with nonrural communities. To address low health literacy in rural communities, this study tested rural participants' understanding of previously developed educational chemotherapy videos that were designed for an underserved urban population. Participants were also asked for feedback to determine if the videos could be improved. Methods Fifty English‐speaking patients who reside in counties classified as rural according to the Rural‐Urban Continuum Code designations (RUCC 4‐9) participated in the study. Participants were asked to define 6 chemotherapy terms before and after viewing a short, animated video explaining the term in English. Rates of correct and incorrect definitions provided by participants were also compared with previously published results from an urban cohort. Results All participants had statistically significantly higher rates of correct definitions for all 6 terms following the video intervention. Palliative chemotherapy understanding improved the most (10% correct prevideo and 76% postvideo intervention). For each video, the majority of participants (77%‐92%) suggested no changes to the videos. Conclusion Given the prevalence of low health literacy in rural communities, it is important to have effective educational interventions to improve the understanding of basic oncology‐treatment terminology. This study found that short, educational videos, originally designed for an underserved urban population, can significantly improve understanding of commonly misunderstood chemotherapy terminology in a rural setting as well. Lay Summary Chemotherapy terminology can be confusing to patients. Understanding can be especially difficult in areas with low health literacy, such as underserved urban and rural communities. To address this concern, previously developed short, animated videos describing basic chemotherapy terminology were found to improve patient understanding in an underserved urban setting. In this study, the videos were tested in a rural population and their effectiveness was established. Participants in the rural setting were significantly more likely to correctly define all 6 tested terms after watching the videos. Educational tools for high‐need populations are essential to ensure patients can understand the treatment they receive.
BACKGROUND: Therapeutic misconception (TM) refers to research subjects' failure to distinguish the goals of clinical research from standard personal care. TM has traditionally been determined by questioning the patient about the research study's purpose. Recent research, however, has questioned whether TM is as prevalent as reported due to discrepancies between patient/researcher interpretations of TM questions. The authors have created an interview tool receptive to these advancements to more accurately determine the prevalence of TM. METHODS: Patients were questioned about the trial's purpose as follows: 1) "Is the trial mostly intending to help research and gain knowledge?," 2) "Is it mostly intending to help you as a person?," or 3) "Don't know." Participants were then asked what they thought this question was asking: A) "What my own intentions are for participating," B) "What the official purpose of the research study is," or C) "Not sure." A patient exhibited TM by answering that the official trial purpose was to help him or her. RESULTS: Patients (n = 98) had a mean age of 60 years, were mostly White (64%), had a combined family annual income ≥$60,000 (61%), and 49% had a college degree. Twelve of 98 patients (12%) definitely exhibited TM. This was much lower than the author's original finding of 68% in a similar cohort. Twenty-four of 98 patients (24.5%) were unclear about what one or both questions were asking and could not be categorized. CONCLUSIONS: Previously, a patient was thought to have TM if they answered that the purpose of the trial was to benefit to him or her. An additional query about how patients interpreted that question revealed only 12% definitely had TM.
PURPOSE: Debate continues over whether explicit recommendations for a clinical trial should be included as an element of shared decision making within oncology. We aimed to determine if and how providers make explicit recommendations in the setting of phase I cancer clinical trials. METHODS: Twenty-three patient/provider conversations about phase I trials were analyzed to determine how recommendations are made and how the conversations align with a shared decision-making framework. In addition, 19 providers (9 of whose patient encounters were observed) were interviewed about the factors they consider when deciding whether to recommend a phase I trial. RESULTS: We found that providers are comprehensive in the factors they consider when recommending clinical trials. The two most frequently stated factors were performance status (89%) and patient preferences (84%). Providers made explicit recommendations in 19 conversations (83%), with 12 of those being for a phase I trial (12 [63%] of 19). They made these recommendations in a manner consistent with a shared decision-making model; 18 (95%) of the 19 conversations during which a recommendation was made included all steps, or all but 1 step, of shared decision making, as did 11 of the 12 conversations during which a phase I trial was recommended. In 7 (58%) of these later conversations, providers also emphasized the importance of the patient’s opinion. CONCLUSION: We suggest that providers not hesitate to make explicit recommendations for phase I clinical trials, because they are able to do so in a manner consistent with shared decision making. With further research, these results can be applied to other clinical trial settings.
7022 Background: Rural communities can have low health literacy, which impacts the adequacy of informed consent, adherence to treatment, and outcomes. We had previously created and tested educational videos about basic chemotherapy terminology for use in an underserved population at our inner-city hospital. This study aimed to determine if these videos increased understanding of these terms in rural communities. Methods: Through patient and provider interviews in an underserved urban setting, 20 basic cancer treatment terms were identified as frequently misunderstood. As a pilot, 6 of these terms were explained in short, animated one-minute videos using VideoScribe (Sparkol).To determine if these videos improved understanding in the rural setting, 50 rural patients, specified as patients living in a county ranked 4-9 on the USDA Rural Urban Continuum Code (RUCC) scale, were asked to define each term before and after viewing the video. All answers were audiotaped and double coded for correctness of definition pre and post video screening, using the video definition as the correct definition. Before video and after video correct definition rates were calculated, along with 95% exact binomial confidence intervals using the Clopper-Pearson method. The videos for all 20 terms can be viewed on CancerQuest ( https://www.cancerquest.org/media-center/videos/cancer-treatment-terms ). Results: Participants were mostly white (79%), female (52%), resided in the more rural counties RUCC ranked 6-9 (62%), had < a high school degree (56%) and had a family income of <$40K (59%). Conclusions: Improving health literacy is a critical component in improving care. Our study establishes that a simple and easily disseminated intervention can significantly increase patient understanding of basic chemotherapy terminology in a rural setting. [Table: see text]
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