BACKGROUND: Immunotherapy terminology is complex and can be difficult for patients to understand, threatening informed consent. The aims of this exploratory study are to determine whether patients understand immunotherapy terminology and if the provider defining the term improves patient understanding. METHODS: Conversations between oncology providers and patients discussing immunotherapy were observed(n=39), and technical terms used were noted. With consent, patients were interviewed post-conversation to assess their understanding of these terms(n=39). Comparisons of the terms were conducted using chi-square tests, Fisher's exact tests, or ANOVA where appropriate. RESULTS: 'Immunotherapy' was the most difficult for participants to understand with 48.7% (19/39) correctly defining immunotherapy. 'Immunotherapy agents' was understood 53.8% (14/26) of the time. 'Immune system' was well understood (88.5%;23/26). Providers defined immunotherapy in 97.4% of conversations. There was no correlation between having immunotherapy defined in the conversation, and the likelihood of a correct definition (p=0.487). 'Immune system' was defined in 92.3% of conversations (n=26), and defining it in the conversation was correlated with increased patient understanding (p=0.009). CONCLUSION: Our results indicate that patients have difficulty understanding some immunotherapy terminology. Since patient understanding of key terminology is crucial for informed consent and patient care, it is essential to implement interventions to improve understanding.

Importance: Ethical discussions have suggested that physicians who treat other physicians may put their physician-patients at risk of receiving non-standard-of-care treatment, which may result in worse outcomes. This phenomenon occurs when a physician treats a fellow physician as a VIP (very important person), and is therefore known as VIP syndrome. It is important to assess physicians' perceptions when treating physician-patients. Objective: To determine whether the physicians treating other physicians have attitudes toward or act in ways that could place physician-patients at risk for VIP syndrome. Design, Setting, and Participants: This 2-part qualitative study was conducted from December 1, 2021, to February 28, 2022. Physicians who worked at a single comprehensive cancer center with experience treating other physicians were eligible to participate. Convenience sampling was used. Emails and flyers were sent out with study information, and if interested, physicians were able to schedule an interview. Of 24 physicians responding, 3 did not have experience treating other physicians, yielding a sample of 21 (88%), which was sufficient to reach a saturation of themes. After the initial structured interview of physicians, follow-up key informant interviews were performed. Exposures: The structured interview was developed on the basis of a literature review and focused on factors that may contribute to VIP syndrome. Main Outcomes and Measures: Participant responses to open-ended questions were qualitatively coded using standard multilevel semantic analysis to assess physician perceptions of treating fellow physicians. A series of Likert-scaled questions were used to identify potential contributing factors to VIP syndrome. Results: Twenty-one physicians (11 men [52%], 11 White [52%], and 15 [71%] younger than 49 years) participated. Although no physician interviewed stated that they altered their usual treatment plans, 11 (52%) agreed that their physician-patients tried to dictate their own care, and 17 (81%) believed that their physician-patients obtained privileges, such as use of medical knowledge to participate in in-depth discussions of care, ability to obtain and use the treating physicians personal contact information, and receiving faster access to care. Eleven respondents (52%) reported increased stress, and 12 (57%) experienced more pressure not to disappoint their physician-patients. Conclusions and Relevance: The findings of this qualitative study suggest that when physicians treat other physicians, the physician-patients may obtain privileges unavailable to patients who are not physicians. Therefore, guidelines to help physicians navigate the complex relationships between themselves and their physician-patients are needed to ensure equitable outcomes between physician and nonphysician patients..

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.

Objective: To describe the strategies families report using to address the needs and concerns of siblings of children, adolescents, and young adults undergoing hematopoietic stem cell transplant (HSCT). Methods: A secondary semantic analysis was conducted of 86 qualitative interviews with family members of children, adolescents, and young adults undergoing HSCT at 4 HSCT centers and supplemented with a primary analysis of 38 additional targeted qualitative interviews (23 family members, 15 health care professionals) conducted at the primary center. Analyses focused on sibling issues and the strategies families use to address these issues. Results: The sibling issues identified included: (1) feeling negative effects of separation from the patient and caregiver(s); (2) experiencing difficult emotions; (3) being faced with additional responsibilities or burdens; (4) lacking information; and (5) feeling excluded. Families and health care providers reported the following strategies to support siblings: (1) sharing information; (2) using social support and help offered by family or friends; (3) taking siblings to the hospital; (4) communicating virtually; (5) providing special events or gifts or quality time for siblings; (6) offering siblings a defined role to help the family during the transplant process; (7) switching between parents at the hospital; (8) keeping the sibling's life constant; and, (9) arranging sibling meetings with a certified child life specialist or school counselor. Conclusions: Understanding the above strategies and sharing them with other families in similar situations can begin to address sibling issues during HSCT and can improve hospital-based, family-centered care efforts.

Objective: Many groups recommend assessment of patient preferences particularly for patients with advanced, incurable cancer. We, therefore, developed the Patient Preference Assessment Tool (PPAT) to ascertain patient preferences in order to inform clinician recommendations and improve shared decision-making. The aim of this study is to assess the PPAT's impact on clinicians' strength of recommendations for phase I oncology clinical trials. Methods: Clinicians recorded the strength of their recommendation on a Likert scale before viewing the patient's PPAT. After viewing the PPAT, the clinician discussed the clinical trial with the patient and then recorded the strength of recommendation again. If there was a change, the clinician noted the reason for the change: clinical findings or patient preference. Clinicians were interviewed about the acceptability of the tool. Our threshold for determining if a change in recommendation due to the PPAT was significant was 20%, given the multiple factors influencing a clinician's recommendation. We also noted the type of phase I conversation observed based on classifications defined in prior work—priming, treatment-options, trial logistics, consent. Results: N = 29. The strength of the clinicians' recommendations changed due to patient preferences in 7 of 29 (24%) of the conversations. The seven changes due to preferences were all in the 23 treatment-options conversations, for an impact rate of 30% in this type of conversation. 82% of clinicians found the PPAT useful. Conclusion: The PPAT was impactful in an academic setting, exceeding our 20% impact threshold. This tool helps achieve the important goal of incorporating patient preferences into shared decision-making about clinical trials.

Background: Although patient advocates have developed templates for standard consent forms, evaluating patient preferences for first in human (FIH) and window of opportunity (Window) trial consent forms is critical due to their unique risks. FIH trials are the initial use of a novel compound in study participants. In contrast, Window trials give an investigational agent over a fixed duration to treatment naïve patients in the time between diagnosis and standard of care (SOC) surgery. Our goal was to determine the patient-preferred presentation of important information in consent forms for these trials. Methods: The study consisted of two phases: (1) analyses of oncology FIH and Window consents; (2) interviews of trial participants. FIH consent forms were analyzed for the location(s) of information stating that the study drug has not been tested in humans (FIH information); Window consents were analyzed for the location(s) of information stating the trial may delay SOC surgery (delay information). Participants were asked about their preferred placement of the information in their own trial’s consent form. The location of information in the consent forms was compared to the participants’ suggestions for placement. Results: 34 [17 FIH; 17 Window] of 42(81%) cancer patients approached participated. 25 consents [20 FIH; 5 Window] were analyzed. 19/20 FIH consent forms included FIH information, and 4/5 Window consent forms included delay information. 19/20(95%) FIH consent forms contained FIH information in the risks section 12/17(71%) patients preferred the same. Fourteen (82%) patients wanted FIH information in the purpose, but only 5(25%) consents mentioned it there. 9/17(53%) Window patients preferred delay information to be located early in the consent, before the “Risks” section. 3/5(60%) consents did this. Conclusions: Designing consents that reflect patient preferences more accurately is essential for ethical informed consent; however, a one-size fits all approach will not accurately capture patient preferences. We found that preferences differed for FIH and Window trial consents, though for both, patients preferred key risk information early in the consent. Next steps include determining if FIH and Window consent templates improve understanding.

BACKGROUND: Biobank funding is unstable and biobank administrators are concerned about loss of funding and subsequent biobank closure. Nevertheless, only a minority of biobanks have policies regarding the distribution or destruction of tissue if the biobank were to close. To the authors' knowledge, the current study is the first to report on the preferences of oncology biospecimen donors regarding the handling of their biospecimens in the event of biobank closure. METHODS: A total of 98 biospecimen donors who were diagnosed with cancer at the Georgia Cancer Center for Excellence at Grady Memorial Hospital or the Winship Cancer Institute were interviewed concerning their preferences for the handling of their biospecimens in the event of biobank closure. RESULTS: The majority of biospecimen donors who expressed a preference (62 of 83 donors; 75%) wanted their biological materials transferred to another biobank, specifically an academic bank or a national bank. The most unacceptable options for the handling of tissue were transfer to a for-profit/pharmaceutical biobank (39 of 98 donors; 40%) or a biobank based outside of the United States (31 of 98 donors; 32%). Nonwhite participants were more likely to view the transfer of their tissue to a for-profit/pharmaceutical tissue bank, international tissue bank, or a national tissue bank as unacceptable compared with white participants. CONCLUSIONS: According to these biospecimen donors, the most acceptable options for the handling of biospecimens after biobank closure were transfer to an academic or national bank. The most objectionable options were transfer to a for-profit/pharmaceutical biobank or a biobank based outside of the United States. These findings can be used as the basis for educational interventions directed at the public and can inform the policies of biobanks that serve oncology research. Cancer 2017;123:4648-4652. © 2017 American Cancer Society.

Some individuals’ understanding of informed consent (IC) information may improve with electronic delivery, but others may benefit from face-to-face (F2F). This randomized, multisite study explores how individuals from diverse backgrounds understand electronic IC documents versus F2F, their confidence in understanding, and enrollment in research. A total of 501 patients at two U.S. biobanks with diverse populations participated. There were no overall differences between electronic and F2F understanding, but F2F predicted higher confidence in understanding and enrollment. Ethnicity and a higher educational level predicted higher understanding and confidence. Study findings suggest that electronic consent may lead to better understanding for non-Hispanic patients of higher socioeconomic status. F2F processes may lead to better understanding and higher enrollment of patients from Hispanic and lower socioeconomic levels. Researchers should carefully consider how they implement electronic IC processes and whether to maintain an F2F process to better address the needs and limitations of some populations.

The coronavirus disease (COVID-19) pandemic has forced healthcare systems to develop strategies to allocate critical care resources when demand outstrips supply (1). The pandemic has also disproportionately impacted Black patients (2, 3), for whom baseline health disparities are well documented and largely driven by inequity in social determinants of health. Concerns about the potential for inequity in resource allocation were raised early in the pandemic, especially if morbidity limiting near-term survival was factored into allocation decisions. Two mitigation strategies to avoid inequity in allocation have been proposed: eliminating consideration of expected survival beyond 1 year and incorporating measures of social disadvantage such as the Area Deprivation Index (ADI) (2, 4, 5).

Background: Previously, we showed that chemotherapy terminology is difficult for patients to understand. Therefore, we developed short videos explaining key terminology and though proven effective, they will only be helpful if appropriately disseminated. Therefore, we aimed to determine the best dissemination method at three different healthcare settings. Methods: With consent, we interviewed healthcare workers from (1) an academic cancer center, Winship Cancer Institute (Winship) serving higher SES patients, (2) an inner-city, safety-net hospital Grady Memorial (GMH), (3) clinics serving rural Georgia, from the Winship Community Network (Network). All interviews were transcribed and analyzed using a semantic content analysis method. Suggested dissemination plans were then implemented. Results: Twenty-two Winship, 11 GMH, and 4 Network healthcare workers were interviewed. Seventy-two percent (n = 8) of the GMH and 100% (n = 4) of Network healthcare workers felt that the best place for patients to view the videos was in the clinic, compared to 27% (n = 6) of the Winship clinicians. 68% (n = 15) of the Winship clinicians stated an app would be the most useful format, compared to 27% (n = 3) at GMH, and 0% at Network sites. Video viewing increased after dissemination plans were implemented. CONCLUSION: Educational materials explaining oncology treatment terminology enhance patient understanding, yet without proper dissemination, these tools may never reach the intended patient population. Our study shows that dissemination plans need to be tailored to each individual patient population, with rural and lower SES patients needing to view the videos during clinic visits, and patients of more means viewing them using technology at home.