Quality of life and decisional regret after total glossectomy with laryngectomy: A single-institution case series.

OBJECTIVES: Total glossectomy with total laryngectomy is a life-altering procedure reserved for extensive or recurrent head and neck cancer. There is minimal literature describing quality of life in these patients, partly due to high mortality rates. METHODS: Patients who had undergone a total glossectomy with laryngectomy between 2014 and 2021 at our institution, identified by chart review, were eligible. Four validated scales were used to assess quality of life and satisfaction with decision. RESULTS: Four of five survivors agreed to participate. The average scores for the Satisfaction with Decision scale and the University of Washington Quality of Life scale were 4.4/5 and 70/100, respectively, showing that patients were satisfied with their decision and quality of life. However, the average function score for the UW-QoL scale, 36.4/100, highlights negative effects of the procedure on mood, oral function, and activity. CONCLUSIONS: This case description provides a picture of patients' quality of life after total glossectomy with laryngectomy, which may be useful for counseling future patients.

Improving oncology first-in-human and Window of opportunity informed consent forms through participant feedback.

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.

Evaluation of Standard-of-Care Practices Among Physicians Who Treat Other Physicians: A Qualitative Study.

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.

Dissemination of validated health literacy videos: A tailored approach.

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.

Therapeutic Misconception about Research Procedures: Does a Simple Information Chart Improve Understanding?

In phase I trials, some biospecimens are used both for research and patient care and some for research only. Some research participants have therapeutic misconception, assuming all biospecimens are for patient care. This study's aim was to test if a simple information chart would improve understanding of nontherapeutic research procedures. A two-arm study was conducted. Participants in the control group (C) were asked whether biospecimens were for their care, for research only, or for both. The experimental group (E) was asked the same questions but provided with a study-specific information chart labeling the purpose of each biospecimen. One hundred one patients were interviewed. In both arms, understanding that pretreatment blood draws were for patient care and research was moderate (49% for C and 62% for E). Understanding that posttreatment blood draws were for research only was significantly higher in the experimental arm (16% for C and 44% for E; p = 0.002). Providing a simple information chart may help alleviate this aspect of therapeutic misconception.

Understanding Immunotherapy Terminology: An Analysis of Provider-Patient Conversations.

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.

Physician Communication and Patient Understanding of Molecular Testing Terminology.

BACKGROUND: The use of molecular testing in oncology is rapidly expanding. The aim of this study was to determine how oncologists describe molecular testing and whether patients understand the terminology being used. MATERIALS AND METHODS: Sixty conversations between oncologists and patients about molecular testing were observed, and the used technical terms were noted by the researcher. Patients were interviewed post-conversation to assess their understanding of the noted technical terms. A patient understanding score was calculated for each participant. Comparisons of the terms were conducted using χ2 tests, Fisher's exact tests, or ANOVA when appropriate. RESULTS: Sixty-one unique technical terms were used by oncologists, to describe seven topics. "Mutation" was a challenging term for patients to understand with 48.8% (21/43 mentions) of participants correctly defining the term. "Genetic testing" and "Gene" were understood a little more than half the time (53.3%; 8/15 and 56.4%; 22/39 respectively). "DNA" was well understood (80%; 12/15). There was no correlation between the terms being defined by the oncologist in the conversation, and the likelihood of the patient providing a correct definition. White participants were significantly more likely to understand both "mutation" and "genetic testing" than non-White participants. Forty-two percent (n = 25) of participants had an understanding score below 50%, and a higher family income was significantly correlated with a higher score. CONCLUSION: Our results show that oncologists use variable terminology to describe molecular testing, which is often not understood. Because oncologists defining the terms did not correlate with understanding, it is imperative to develop new, improved methods to explain molecular testing. IMPLICATIONS FOR PRACTICE: The use of molecular testing is expanding in oncology, yet little is known about how effectively clinicians are communicating information about molecular testing and whether patients understand the terminology used. The results of this study indicate that patients do not understand some of the terminology used by their clinicians and that clinicians tend to use highly variable terminology to describe molecular testing. These results highlight the need to develop and implement effective methods to explain molecular testing terminology to patients to ensure that patients have the tools to make autonomous and informed decisions about their treatment.

Videos improve patient understanding of chemotherapy terminology in a rural setting.

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.

Reassessing the measurement and presence of therapeutic misconception in a phase 1 setting.

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. LAY SUMMARY: Therapeutic misconception (TM) refers to research subjects' failure to distinguish the goals of clinical research from standard personal care. TM signals a basic misunderstanding of the purpose of clinical research, threatening valid informed consent to participate in clinical trials. TM has traditionally been determined by questioning patients about their research study's purpose. Recent research, however, has questioned whether TM is as prevalent due to discrepancies between patient/researcher interpretations of TM questions. By developing an interview-tool receptive to these advancements, we report a lower TM estimate in the phase 1 setting (12%) than we found previously in a similar cohort (68%).

Evaluating the impact of the Patient Preference Assessment Tool on clinicians' recommendations for phase I oncology clinical trials.

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.

Provider Recommendations for Phase I Clinical Trials Within a Shared Decision-Making Model in Phase I Cancer Clinical Trial Discussions.

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.

Ethics in Eye Banking: Understanding Professional Attitudes Toward Industry Changes.

PURPOSE: To describe the ethical attitudes of corneal surgeons and eye bank leadership toward for-profit entities in corneal donation, processing, and distribution. METHODS: Fifty postfellowship corneal surgeons practicing in the United States and 25 eye bank leaders (eg, eye bank directors, CEOs, or presidents) for the Eye Bank Association of America-accredited eye banks completed a 22-question interview, focusing on corneal donation industry changes, including the entry of for-profit institutions. RESULTS: Most participants in both study groups agreed that they have concerns with the entry of for-profit businesses into eye banking (62% corneal surgeons, 68% eye bank leadership), although physicians partnered with a for-profit corneal processor were significantly more likely to have no concerns with the entry of for-profits into eye banking than corneal surgeons partnered with a nonprofit processor (P = 0.04). The most frequently identified concerns with the entry of for-profit businesses into corneal banking were the hypothetical loss of donor trust (56% corneal surgeons, 64% eye bank leadership, P = 0.04) and the potential exploitation of donor generosity (72% corneal surgeons, 60% eye bank leadership). Qualitative theme analysis suggests that both study groups may view increased research/innovation as a potential benefit (64% corneal surgeons, 66% eye bank leadership) of for-profits in eye banking. CONCLUSIONS: Key stakeholders in eye banking do hold relevant ethical beliefs toward recent industry changes, and these attitudes should be considered in the future creation of the ethical corneal donation policy. Further research is needed to assess the attitudes of potential donors and donor families.

The Impact of Genetic Counseling Educational Tools on Patients' Knowledge of Molecular Testing Terminology.

Molecular testing is increasingly being integrated into cancer management. Despite rapid advancements, little work has been done to explore strategies for communicating with patients undergoing molecular tumor testing. This study evaluated the impact of genetic counseling educational tools on improving patients' understanding of key terms related to molecular testing. A genetic counseling intern designed a picture book to explain six words found in prior research to be difficult to understand (mutation, germline mutation, somatic mutation, biomarker, molecular testing, and targeted therapy). Participants who had previously discussed molecular testing with their oncologist were asked to define the terms. The same participants then received an explanation of each term either from the intern using the picture book in person or from a video presentation of the picture book. They were then asked to redefine each term afterward. The difference between the number of terms defined correctly pre- and post-intervention was compared between presentations. Sixty-three patients with melanoma, colon, lung, or breast cancer were recruited. After both interventions, correct understanding rates improved for all six terms, with significant improvement for germline mutation (p < 0.001), somatic mutation (p < 0.001), biomarker (p < 0.001), and molecular testing (p < 0.001). Understanding of targeted therapy improved significantly (p = 0.011) for the video presentation only. Mean change in knowledge scores did not differ between the two interventions (intern presentation 3.2 vs. video 2.9, p = 0.428). Our data suggest that genetic counseling educational tools can increase patient understanding of terms used to describe molecular testing.

Videos improve patient understanding of misunderstood chemotherapy terminology.

BACKGROUND: Chemotherapy is the backbone of many cancer therapies; however, the terminology used to describe chemotherapy may be difficult for patients to understand, particularly in underserved populations. Studies have shown that educational videos can improve patient understanding of cancer-related terms. The goal of this study was to identify chemotherapy terms that were difficult for an underserved population to understand and then develop and test educational videos describing these terms. METHODS: A word bank of 50 difficult-to-understand chemotherapy terms was developed by querying 15 providers and 50 patients at an underserved hospital. Twenty of these terms were then tested with 50 additional patients to determine rates of misunderstanding. Six pilot educational videos describing 6 important terms were created using VideoScribe and then assessed with 50 patients to see if they improved understanding. RESULTS: Fifteen of the 20 terms tested to establish rates of misunderstanding were misunderstood by more than one third of patients, with 98% unable to define maintenance, 74% unable to define cancer, and 58% unable to define chemotherapy. Patient understanding of all 6 terms improved by at least 20% after watching the videos. Notable improvement was reported for palliative chemotherapy, where before-and-after video understanding increased from 0% to 72%. CONCLUSION: Chemotherapy, a backbone of cancer treatment, is described with terms that are difficult to understand. Short, animated educational videos can significantly increase patient understanding of chemotherapy terminology.

Academic oncology clinicians' understanding of biosimilars and information needed before prescribing.

BACKGROUND: With increasing numbers of oncology biosimilars in the approval pipeline, it is important to investigate oncology clinicians' understanding of biosimilars and what information they need prior to adoption. METHODS: Between January and May 2018, 77 oncology clinicians (52 physicians, 16 pharmacists, and 9 advanced practice providers) completed a survey covering three domains: clinician understanding, prescription preferences, and patient involvement. An in-depth interview was designed based on themes identified in the first 50 surveys: cost, safety and efficacy, patient preference, and disease stage. Participants were chosen to participate in the interview based on outlying responses to survey questions. RESULTS: When asked to define a biosimilar, 74% (57/77) of respondents could not give a satisfactory definition, and 40.3% (31/77) considered a biosimilar the same as a generic drug. The most important factor in biosimilar prescription was safety and efficacy (4.51 out of 5) followed closely by cost differences (4.34 out of 5). A 40% increase (53.2-94.8%) in clinicians' prescribing likelihood was seen after a biosimilar is designated as interchangeable. Participants in this study were split regarding the importance of shared decision-making with patients [50.7% (39/77) important or extremely important, 39.0% (30/77) somewhat or not at all important]. Clinicians were also split concerning the role that pharmacists should play in the decision to prescribe or substitute biosimilars. CONCLUSION: Understanding of biosimilars is low, and educational needs are high. The information that clinicians deem important to assess, such as safety, efficacy and cost, will need to be provided before they are comfortable prescribing biosimilars.

Potential Benefits to Families, Children, and Adolescents Enrolled in Longitudinal Qualitative Research.

Previous research has focused on the risks of research participation but has rarely considered possible benefits. For a study of family decision-making during pediatric bone marrow transplant, we conducted qualitative interviews with 132 family members across 36 families up to three times over the course of a year, before and after transplant. We concluded the study with qualitative interviews of 70 family members from 21 of the original families one year after the transplants, focusing on benefits and concerns regarding their research participation. Participants, including children and adolescents, reported benefits including the opportunity to talk, be altruistic, reflect, have a safe space, gain understanding or perspective, and express emotions. Sixteen percent expressed concerns, mostly finding aspects of the methodology annoying. We encourage institutional review boards to understand that sensitive conversations with adults, children or adolescents may not always increase the risk of the study and may offer benefits to those who agree to be interviewed. We therefore suggest that language describing potential benefits could be included in consent and assent forms for qualitative studies.

Patient perspectives on compensation for biospecimen donation.

BACKGROUND: The purpose of this study was to determine whether biospecimen donors believe they should receive compensation. This is the first study to report biospecimen donors' views on compensation and can potentially improve informed consent and recruitment practices. METHODS: Researchers asked patients undergoing surgical removal of tissue to donate biological materials to a biobank; the request was made at their presurgical appointment or in the preoperative clinic of the Emory University Hospital. We interviewed 126 biospecimen donors within 30 days post surgery regarding their perspective on compensation for biospecimen donation. RESULTS: In response to the question "Should you be paid for your participation in the tissue bank?," 95 (95/126, 75%) participants answered "No." Of these, 55 (55/95, 58%) indicated that donating biological materials should be about altruism, not gaining a monetary reward. Only 11 (11/126, 9%) participants unequivocally believed they should receive compensation, while 14 (14/126, 11%) felt entitled to compensation only under specific circumstances. Eleven (11/14) "Depends" participants indicated that donors should only be compensated when researchers perform for-profit research. Responses varied by race and income level, with whites more likely to not feel entitled to compensation and higher income participants more likely to respond "Depends." CONCLUSIONS: The majority of biospecimen donors stated they should not be paid for tissue bank participation. However, a minority believe they should be paid for donating tissue if the tissue is used in revenue-generating projects. These results provide some support for the current biobanking practice of not providing compensation.

Cancer donor preferences for disposition of their biospecimens after biobank closure.

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.

Discussing molecular testing in oncology care: Comparing patient and physician information preferences.

BACKGROUND: Molecular testing to inform treatment and clinical trial choices is now the standard of care for several types of cancer. However, no established guidelines exist for the type of information physicians should cover during discussions with the patient about the test or its results. The objectives of this study were to identify physician and patient preferences regarding information and who should communicate this information and how to inform guidelines for these conversations. METHODS: Physicians and patients who participated in discussions regarding molecular testing were asked to choose 8 topics of most relevance out of a list of 18. The McNemar test was used to determine their top preferences. Patients were asked to identify what information they wanted to receive and who should inform them, and physicians were asked to identify the best aid to communication. RESULTS: Sixty-six patients identified 12 preferred topics: the benefits of testing (88%), how testing determines treatment (88%), implications for family (71%), whether a test indicates the seriousness of disease (68%), purpose of the test (64%), incidental findings (56%), explanation of cancer genetics (53%), how the test is done (46%), limitations (44%), explanation of biomarker (42%), risks (42%), and uninformative results (38%). Physicians added cost (59%). Patients preferred receiving information about molecular testing from their nurse or physician (85%), and physicians preferred using a pamphlet (67%) to augment communication. CONCLUSIONS: The topics identified as important to discuss can inform future guidelines and can contribute to effective communication regarding molecular testing. Cancer 2017;123:1610-1616. © 2017 American Cancer Society.