bluuebunny/crossref_metadata_2025_split huggingface dataset:
Gynecologic oncology patients’ perception of physician empathy in the age of COVID-19.
Authors: Cohn Gavriel , Whitcomb Bradford 
Published: June 2023

e24186 Background: Since the beginning of the COVID-19 pandemic there have been major changes to the medical office experience, including universal masking. Prior studies had shown that the environmental layout1, the ability of the patients to see the physician’s face2, as well as the interactions with other office staff members3, as well as the length of the patient-physician relationship4 all played into the patient’s perception of physician empathy and that this perceived. Because establishing care during the pandemic would undercut many of these known factors, it was hypothesized that those who established care after the onset of the pandemic would have lower scores on the Jefferson scale of Physician empathy (JSPE) and European Quality of life survey (EQ-5D™). Methods: Patients of the Carole and Ray Neag Cancer Center department of Gynecologic Oncology at UConn Health were surveys at the time of their appointments. Sampling occurred between June and November of 2022. Surveys collected demographic information including age, stage of cancer, and number of visits since the onset of the pandemic in March 2020; the JSPE along with questions directly related to care during the pandemic scored the same way; the EQ-5D™; and a checkable list of changes noted in the office. The results of the “Pre-COVID” and “Post-COVID” cohorts were compared using a two-group t-test for statistical significance. An n of 30 per cohort was needed for a power of > 80%. Results: Results showed that patients who had established care prior to the pandemic (n = 29) were more likely to be seen while in remission while those who established care after the onset of the pandemic (n = 33) were more likely to be seen for postoperative surgical care or an active cancer. Patients who established care prior to the pandemic had statistically significantly lower scores on the JSPE than those who did not (6.08 +/- 2.00 vs 6.73 +/- 0.71 p = < 0.001). However, individuals who established care prior to the pandemic had statistically higher qualities of life as measured by the EQ-5D™ compared to those who established care after the onset of the pandemic (4.57 +/- 0.72 vs 4.22 +/- 0.85 p = < 0.001). There was no statistically significant difference in the number of changes notes (4.483 +/- 1.57 vs. 5.09 +/- 1.38 p = 0.189). Conclusions: While statistically significant differences between the cohorts were found, the overlapping standard deviations, the fact that the JSPE and EQ-5D™ went in separate directions, and the generally favorable responses lead to the conclusion that the differences were not clinically significant. This means that, contrary to research conducted prior to widespread masking and the COVID-19 pandemic, providers are still able to be perceived as empathetic and provide quality care to their patients despite the changes that have taken place in the medical office setting since the onset of the pandemic.
Patient expectations and understanding of treatment intent in Belize.
Authors: Dickerson James , Wong Wayne , Ohanian Alec , Habet Marta , Bernard Margaret , Huang Franklin W. , Yacab Ramoncito Argenes 
Published: June 2023

e24188 Background: Discordance between patient understanding and physician recorded treatment intent is well documented in high income countries. A large fraction of patients report their palliative intent therapy is curative. We sought to find the discordance rate between patient and physician reported intent in Belize, a low- and middle-income country (LMIC) with a single public oncology clinic, founded in 2018, staffed by a single bilingual medical oncologist who is undertaking additional training in palliative care. In 2022, we surveyed established patients on chemotherapy to assess their understanding of treatment purpose. Methods: Approval was obtained at the Karl Heusner Memorial Hospital and the University of Rochester IRB prior to the study. Between February and March 2022, patients who consented were given a 21-question survey. Here we report on one portion of this survey. Patients with both patient and physician reported data were compared with a McNamar's exact test; a pre-specified exact logistic regression was run to examine potential predictors of patient/provider discordance (age, race, number of days from first chemotherapy to survey administration, patient's primary language). A p-value of 0.05 was used for significance. Results: 29 surveyed patients had both physician- and patient-reported treatment intent; surveys were administered a median of 42 days after first chemotherapy (IQR 26 – 116). 61% (18 of 29) of the sample was on palliative intent treatment. Median age was 51 (IQR 43 – 62) and cancer types were as follows: 45% breast, 24% GI, 24% gynecological, 3.4% head/neck, 3.4% lymphoma. 97% agreed their doctor spoke medical language they understand and 90% agreed they had enough information about their treatment. 31% mis-classified their treatment intent (p = 0.004). All 9 patients who mis-classified stated their palliative intent treatment was curative; this was 50% (9 of 18) of the palliative intent patients. We found no relationship between patient/provider discordance and age, race, number of days from first chemotherapy to survey administration, or patient’s primary language. Conclusions: We surveyed cancer patients in Belize and found that half of the patients on palliative intent therapy thought their treatment was curative. Despite this gap in understanding, 97% reported they understood the medical language being spoken and 90% of the patients agreed that they had good knowledge of their treatment. The amount of discordance described here is similar to reports in high income countries. Most palliative care, and palliative care research, is performed in high income settings. Implementation research with the aim of reducing physician/patient discordance in high-income countries should consider design elements that allow for adaptation to LMICs.
Do Chinese/Chinese-American patients prefer indirect communication methods?
Authors: Galkin Maria , Lu Weiran , Vesel Tamara 
Published: June 2023

e24195 Background: Cancer care requires high quality, patient-centered communication. Existing studies of communication preferences of Chinese/Chinese-American pts suggested that they prefer an indirect approach to bad news. We administered the Measure of Patient Preferences (MPP) to pts at our cancer center, many of whom identify as Chinese or Chinese-American. The MPP is a survey comprised of 46 communication-related statements patients (pts) rate on the Likert scale centered on bad news delivery, published by Parker et al in 2001. Methods: The MPP was used with the original author’s permission. Pts were approached in private settings after screening through the EMR. All survey items, including demographic data, were optional. Pts self-identified as Chinese. Forms were available in English, simplified and traditional Chinese. Pts could complete the survey on paper, online, or return by mail. The first statistical analysis found means and medians of data to discover highest and lowest rated communication aspects. Results: Among 185 pts, 52% were women. 9% identified as Chinese (10% total Asian), 73% were white, 17% were black, Latino, other or did not provide data. 29% had a high school education or less, 28% had attended some college, 38% had a college education or higher (data missing for 5%). 57% of pts were older than 65. Malignancies included 18% hematologic, 16% ENT, 13% gynecologic, 10% lymphomas, 9% breast, 8% lung (the rest were comprised of GU, GI, skin, other, and pts who did not provide data). The top rated measures, including some of “directness,” are listed below. Scale was as follows: 1. Not important; 2. Optional; 3. Important; 4. Very important; 5. Essential. The lowest rated measures were “The doctor holding my hand or touching my arm while telling me the news” (2.22 all, 2.5 Chinese) and “My doctor helps me figure out how to tell my family and friends about the cancer” (2.82 all, 3.17 Chinese). Conclusions: Pts placed high value on having doctors tell them the best treatment and having their questions answered. The “directness” preferences between all versus Chinese pts were numerically very similar, challenging existing knowledge. Further analysis and studies are needed.[Table: see text]
Feasibility trial of child care as a therapeutic intervention.
Authors: Singh Jasneet , Lopresti Mary Lorraine , Grigelevich Janine , Dizon Don S. , Fenton Mary Anne 
Published: June 2023

e24196 Background: The incidence rate of cancer among young adults (ages 20-44) has steadily increased over the past decade. Among them, approximately 18% are parents within two years of initial diagnosis. Work as part of our Young Women Surviving support group identified childcare support as an unmet need. We therefore sought to determine the impact of childcare provision on the timeliness of care among young women undergoing chemotherapy for cancer. Methods: We conducted a pilot feasibility study that enrolled a convenience sample inclusive of parents with histologically confirmed invasive breast or gynecologic cancer receiving system chemotherapy and were caring for children 16 years or younger. Following consent, funds were reimbursed for costs related to their preferred childcare resource, including for travel and infusion time. Therapy assessments and an abridged version of the NCCN Distress Thermometer (score ranging from 0-10 with 0 indicating no distress) were administered at each infusion appointment. Feasibility was measured by acceptance of childcare services by > 25% of patients identified as eligible. Results: This study was offered to 26 eligible patients, of which 23 enrolled (88.5%) and 20 have follow-up data. Among study volunteers, 80% were white, 15% were black; Five percent identified as Hispanic or Latino. The median age was 39 years old (range, 31 to 79). The majority of patients (85%) had breast malignancy, while the remaining 15% had gynecological cancers. The median number of treatment events for which babysitting services were paid for were 6 (range, 2-18). Of 19 patients with distress scores, 4 (21%) reported childcare as a stress for them. The median distress score decreased over time, from 5 at first treatment event to a median score of 3 at the eighth event. All participants who completed end of study surveys (16 patients) reported they “agree” or “strongly agree” with the statements “I would participate in child care again” and “Babysitting allowed you to get to your treatment on time.” Over the duration of study, 95% of this cohort did not have any delays in their cancer-directed therapy due to childcare. Conclusions: This is early evidence to suggest providing childcare to patients who are also undergoing chemotherapy is feasible and may be beneficial in improving impact on cancer outcomes and psychological distress. Further studies should include a comparator arm to better clarify the significant of this supportive measure. It is important to continue investigating the impact of supportive services on the quality of life and of care for this unique cohort.
Creating patient-friendly informed consent form (ICF): Insights from global oncology patient insights panels (GOPIPs).
Authors: Aubel Dawn , Ciupek Andrew , Olshan Sydney , Pemberton-Whiteley Zack , Stunt Ali , Davis Kristen , Piggin Maria , Saxton M Claire , Olshan Anne , Salamakha Alexey , Cardoso Fatima , Mason Ginny 
Published: June 2023

e24199 Background: The informed consent form (ICF) provides patients with information to facilitate an informed decision about participation in a clinical trial. Legal and regulatory requirements, professional jargon and technical terms make ICFs long and complicated, creating barriers for patients to understand the participation requirements, which may lead to negative impact on recruitment and increased drop-out rates. Methods: Patient advocates with relevant knowledge of patient experiences in their respective disease areas were invited to review, edit, and provide recommendations for improving draft ICFs for company clinical trials to facilitate better understanding. These advocates are members of the Global Oncology Patient Insight Panels (GOPIPs), contracting with the company to provide the patient perspective along the clinical development continuum. The advocates received draft ICFs and completed a questionnaire regarding its readability, content, and formatting, or provided open-ended feedback. Researchers interviewed advocates to elicit in-depth responses and recommendations for improvement. A qualitative analysis was performed on all data collected to identify primary themes, which were incorporated into an internal guidance for clinical development teams, “Tips for Creating Patient-friendly ICFs: Insights from Global Oncology Patient Insights Panels (GOPIPs) 2018-2022.” Results: 36 draft ICFs for clinical trials were reviewed by 47 advocates in 13 hematology/oncology disease areas and 14 countries between 2018 and 2022. Qualitative analysis identified 5 primary themes: 1) Create easy-to-read documents through simplifying words and using visuals; 2) clearly communicate participation requirements in patient friendly terms, including an executive summary or table of logistical, financial, and patient reported outcomes requirements; 3) provide transparency: background on the treatment and personnel involved in study, explain the study’s privacy policies and what happens if the patient is no longer eligible for the trial; 4) provide supplemental information materials to aid understanding; 5) provide instructions for the investigator/trial team presenting the patient with the ICF. Conclusions: Feedback provided aligns with a recent proposal by the FDA to change existing regulations on informed consent to “facilitate a prospective [trial participant’s] decision about whether to participate in the research.” Findings from this analysis of patient advocate insights will be used to update the organization’s ICF template with improved comprehensibility of the form.
Cancer survivorship: Patient experiences on early phase trials during the COVID-19 pandemic—Qualitative study from an Australian Phase 1 unit.
Authors: Zdanska Oksana , Joshua Anthony M. , Liu Jia (Jenny) , Zdansky Pavel , Stanners Melinda , Rogers Cath 
Published: June 2023

e24202 Background: The COVID-19 pandemic significantly disrupted global access to cancer care. Patient access to early phase trials during COVID-19 was maintained at our major tertiary Phase 1 unit using split teams, remote monitoring, direct to patient drug delivery and telehealth1. While there is substantial research focused on trial access, patient experiences of early phase treatment during the pandemic have not been documented. This research aims to identify early phase trial patients’ needs and provide insight into patients’ journey while receiving novel therapy in the midst of the Australian lockdown. Methods: This qualitative study recruited early phase trial participants with advanced /metastatic cancer treated at St Vincent’s Hospital, Sydney between 2020-2022 whilst the government-mandated lockdown was effective. Participants were audio/video recorded during their interview using a semi-structured approach. Thematic analysis was used to analyse patient stories and identify unmet needs. Analyses were performed using NVivo. Results: Nine clinical trial participants (five females, four males; five new trial participants, four known exceptional responders) consented and completed the in-depth interview (1-2.5 hours). Participants reported that COVID-19 created additional burden at a time of vulnerability, including challenging travel logistics, such as frequent travel exemption requests or need to relocate to access treatment, worsening anxiety and financial toxicity. COVID-19 lockdown induced separation from family abroad, touch deprivation and reduced psychological support for those with advanced cancer needing support, but provided more flexible work arrangements, allowing patients to work from home whilst on treatment. Conclusions: This study revealed unique social, psychological, logistical and financial challenges for cancer patients accessing early phase trials during the COVID-19 pandemic. Development of meaningful patient centred resources and supportive care interventions is needed to assist trial participants. 1N Aggarwal et al (2022), Impact of COVID-19 on early phase clinical trials recruitment and treatment in a major metropolitan Phase 1 Unit, Poster Abstracts. Asia-Pac J Clin Oncol, 18: 33-51. https://doi.org/10.1111/ajco.13856.
The impact of COVID-19 on a stand-alone cancer support community.
Authors: Mitchell Carley , Zhong Jeffrey , Apisdorf Cheryl , Bennett Beth , Wang Qian , Hsu Melinda Laine 
Published: June 2023

e24203 Background: The COVID-19 pandemic altered cancer care delivery, notably through a rise in telemedicine. Patients of racial minority, low income, or older age are less likely to engage in virtual platforms. Support services are effective ways to combat negative effects of both a cancer diagnosis and a pandemic. However, research is limited regarding the impact of COVID-19 on support-based organizations. We aimed to identify variations in participant demographics and resource utilization at The Gathering Place (TGP), a cancer support community, prior to and during the COVID-19 pandemic, as the platform of program delivery shifted from all in person (IP), to virtual (V), to a hybrid (H) in person/virtual setting. Methods: Deidentified, retrospective data was gathered from three distinct six month time periods: 01/01-06/30/2019 (IP), 01/01-06/30/2021 (V) and 01/01-06/30/2022 (H). Participant data including participant type (diagnosed with cancer or affected by cancer), age, sex, race, residential zip code (translated to projected household income), cancer type and programs utilized were collected and analyzed. Baseline demographics were compared among IP, V and H platforms using the Wilcoxon test (for age) and chi-square tests for other variables. Statistical significance was set at two-sided P values < 0.05. Results: Among participants with cancer, there was a greater percentage of females and racially white vs. black individuals. Sex, race and projected income did not change significantly over time. However, age significantly decreased from IP to V/H settings. The percentage of participants engaging in support, exercise, art and mind/body programs significantly decreased from IP to V/H settings, whereas educational engagement increased. Similar results were recognized among participants affected by cancer. Conclusions: The change in median age at TGP as a result of the COVID-19 pandemic, and subsequent shift in program delivery, mirrors the disparity in telemedicine utilization among the older population. While race and projected median household income did not change over time, the 2019 data suggests that participation is already highly skewed towards white and higher income participants compared to the local demographic distribution. Moving from IP to V/H delivery, program utilization with more interpersonal camaraderie and social bonding decreased, while programs involving less of these qualities remained the same or increased over time. This data highlights important gaps in utilization and underscores the gravity of in person interaction that has been altered by the COVID-19 pandemic. [Table: see text]
Impact of death anxiety (DA) on the psychological well-being and survival of patients with advanced cancer (ACP) in phase I trials and their spousal caregivers (SC).
Authors: Hlubocky Fay J. , Cella David , Sher Tamara , Daugherty Christopher K. 
Published: June 2023

e24213 Background: ACP and their SC experience psychological distress living with future uncertainty regarding their cancer. Yet, little is known how existential DA adversely impacts the psychological well-being and overall survival of ACP participating in Phase I trials and their SC. Methods: A prospective study of ACP enrolling in phase I trials and their SC were assessed at baseline (T1) and one month (T2) using quantitative symptom measures including: depression (CES-D), state anxiety (STAI-S), quality of life/qol (FACIT-Pal), and global health (SF-36). Semi-structured interviews evaluated DA: suffering; meaning, and worry re death. Results: To date, 158 participants (79 Phase I ACP and 79 SC) have been separately interviewed at T1 and T2. For the total population: median age 62 (28-79y); 50% male; 100% married; 89% Ca; 69% > HS educ; 59% GI dx; ACP median survival 8.2 month (.51-18.8) 53% income < $65,000 yr. At T1, 83% of ACP experienced worry re death, and 77% reported suffering. For SC at T1, 75% reported worry re ACP death; 88% worried re own death; and 85% reported experiencing suffering and 84% lost meaning during the ACP illness. For both ACP and SC, rates remained consistent for both ACP and SC. At T2, ACP with worry re death had higher STAI-S (32±11 v. 28±9, p = 0.04) and CES-D scores (12±10 v. 11±10, p = 0.03). SC with self-reported suffering had higher STAI-S anxiety (38±15 v. 34±12, p = 0.02) at T2. Regression analyses revealed ACP with worry had worsening FACIT-Pal QOL over time. Also, SC with suffering at T2 was negatively associated with SF-36 scores. Regarding survival, ACP with DA had shorter survival compared to ACP without DA (4.4 v. 6.9 months, p = 0.02). Conclusions: Phase I ACP and SC report worry re death and suffering negatively impacting their psychological well-being and survival. Supportive couple-based, dyadic psychological interventions for ACP-SC designed to address DA coping are needed.