bluuebunny/crossref_metadata_2025_split huggingface dataset:
Recommendations for improving digital health literacy in patients with cancer receiving care in the Deep South.
Authors: Hildreth Keyonsis , Henderson Nicole , Bourne Garrett , Azuero Andres , Chu Daniel I , Caston Nicole E. , Dent D'Ambra , Hardy Claudia M. , Herring Loretta , Ingram Stacey A. , McGowen Chelsea , Young Pierce Jennifer , Williams Courtney , Rocque Gabrielle Betty 
Published: October 2023

202 Background: As technological advances are developed and implemented in healthcare, cancer patients with low digital health literacy may be at increased risk of health inequities. This study explored recommendations for improving digital health literacy related to electronic patient-reported outcome (ePRO) based remote symptom monitoring (RSM). Methods: This qualitative study, conducted December 2021-May 2023, included (1) patients with cancer and oncology providers from University of Alabama at Birmingham and University of South Alabama Mitchell Cancer Institute participating in RSM, and (2) community health workers (CHWs) who serve communities experiencing care access barriers across Alabama. Semi-structured interviews were conducted via phone, Zoom, or in-person. Recordings were transcribed and inductively content coded using Nvivo software for recurring themes and exemplary quotes by two independent coders. Results: Patients with cancer (n=19), providers (n=15), and community health workers (n=13) participated. Among patients and providers participating in RSM, recommendations included additional tech-focused training opportunities and in-person tech guidance. CHWs expanded upon this with four key recommendations involving provider-facing interventions. The first was to engage in communication-focused interventions that encourage use of lay language, developing cultural competency among providers, and “meeting patients where they are,” because as one CHW explained “if you don't actually understand the actual language, then you're never going to be able to really understand what's going on with your health.” A second recommendation was to focus on individual and community needs, such as lobbying to bring Wi-Fi to rural locations and developing subsidized cost programs for individuals who need them. CHWs then highlighted the existence of community partnerships and technology-focused training programs that largely go underutilized by local populations. Further developing these partnerships would also serve to emphasize the connection to the local community and legitimization of digital healthcare services. Finally, CHWs encouraged providers to emphasize to patients that technology in healthcare is a tool to facilitator greater connection and communication between patients and providers and that there is a “face behind the screen.” Conclusions: This study identifies key recommendations on how to address digital health literacy gaps and communicate the importance of the technologization of the American healthcare system to local communities in Alabama.
Transportation assistance in gynecologic oncology: A pilot study.
Authors: Smith Anna Jo Bodurtha , Powell Kristina , Doherty Meredith , Hinkle Stefanie , Bekelman Justin E. , Simpkins Fiona , Ko Emily Meichun 
Published: October 2023

206 Background: Patients who experience transportation barriers to cancer care are less likely to receive optimal treatment and more likely to have delays in care. Our objective was to assess the prevalence of transportation barriers and the impact of a transportation intervention in gynecologic cancer care. Methods: We prospectively screen patients seen at new visits and at clinical trial enrollment in the 5 University of Pennsylvania gynecologic oncology practices for transportation barriers to cancer care. Patients who screen positive are referred to the intervention program, a ride-sharing service through RideHealth. Rides are available to and from clinic visits, to and from chemotherapy or radiation sessions, or to surgical procedures. There are no income or insurance restrictions on transportation assistance; per federal regulation, patients had to live within 40 miles of their oncology practice to receive transportation. Results: From June 2022 to April 2023, 1200 patients were screened. Of these, 34 screened positive for transportation barriers. All of those who screened positive accepted ride-sharing services. Two patients who screened positive were not eligible for ridesharing as they lived greater than 40 miles from our practices. Two patients who screened positive had transportation benefits available through their health insurance and were redirected to those services. We have provided 193 rides for 30 identified patients. The average length of ride was 9.2 miles (range 2.4-14), and the average cost per month was $1,200. Evaluation of clinical impact is ongoing. Conclusions: Transportation assistance is highly acceptable to patients and can facilitate access to cancer care.
Patient perspectives of the quality of preoperative education in surgical cancer care.
Authors: Jones Bayley A , Pisu Maria , Smith Burkely , Schoenberger Yu-Mei , Wang Lingling , Ivankova Nataliya V. , Richman Joshua , Chu Daniel I 
Published: October 2023

207 Background: Preoperative education is an important component of surgical cancer care that has been shown to impact surgical outcomes. However, the quality of education varies, especially among patients with low health literacy (HL), which is prevalent among states in the Deep South. Low HL patients experience worse surgical outcomes, and variation in preoperative education further increases the disparity gap for this vulnerable patient population. We aimed to characterize patient perspectives of preoperative education by HL level among gastrointestinal cancer patients in the Deep South. Methods: Surveys were administered to colorectal, pancreatic, and esophageal cancer survivors in Alabama and Mississippi. Eligible participants had stage 1-3 cancer, were within 5 years of diagnosis, and had surgery as part of their cancer care. Participants were also administered the BRIEF survey, which is a validated four question survey measuring HL level. Patients with a score of 17 or higher were categorized as having adequate HL, while a score of 16 or less were categorized as having low HL. Fisher Exact or Chi Square tests were performed to examine significant differences between patients with low and adequate HL. Results: Of 272 survey respondents, the mean age was 63.17 (±11.57) and 151 (55.5%) were women. 92 (33.8%) had low HL and 174 (64.0%) had adequate HL. Compared to patients with adequate HL, patients with low HL reported lower rates of a health care provider in the surgeon’s clinic definitely giving them all the information needed about their surgery (80.9% versus 90.1%, p=0.07) and lower rates of their surgeon or other provider definitely talking to them about what to expect for surgery and recovery (76.4% versus 89.0%, p=0.03, respectively). Low and adequate HL patients reported similar rates of receiving instructions about getting ready for surgery (88.6% and 90.1%, p=0.66). However, 88.3% of low HL patients reported these instructions were easy to understand compared to 97.4% for adequate HL patients (p=0.001). Low and adequate HL patients reported similar rates of visual aids used during education (76.1% versus 78.2%, p=0.54, respectively), with low HL patients reporting slightly lower use of flyers/pamphlets with pictures (58.7% versus 60.3%, p=0.79) and drawings (40.2% versus 42.5%, p=0.72); similar use of models (9.8% versus 9.2%, p=0.86); and less frequent use of videos (7.6% versus 10.9%, p=0.39). Conclusions: Patient-reported disparities in preoperative education exist among surgical cancer patients with low health literacy. 1 in 5 patients with low HL did not think they received enough information prior to surgery and the information they received was difficult to understand. Overall, there was a low use of visual aids among this patient population. Future directions should aim to improve the quality of education for low HL, incorporating the use of visual aids.
Assessing the effectiveness of a learning collaborative to build capacity for community-based cancer survivorship navigation.
Authors: Hamlish Tamara , Holzman Castellands Talia , Papautsky Elizabeth Lerner , Hughes M. Courtney , Gonzales Elaine D 
Published: October 2023

213 Background: Community-based patient navigation has emerged as a highly effective strategy to increase cancer screening and early diagnosis, particularly for underserved populations. This navigation typically ends at diagnosis, when patients transition to clinical care. However, clinical navigation offers limited assistance to connect survivors with a broad range of community resources and support services. Community-based survivorship navigators have the potential to bridge this gap. We implemented a virtual learning collaborative (VLC) to build community capacity to deliver breast cancer survivorship navigation. Our research assesses the impact of the VLC on participants' behaviors, self-efficacy, and barriers to navigation. Methods: We conducted an analysis of data from the Breast Cancer Survivorship Patient Navigator Virtual Learning Collaborative (VLC), a 14-week practice-based training for community health workers and patient navigators to address the needs of breast cancer survivors. Weekly 60-minute virtual learning sessions included a brief didactic, followed by participants’ presentation of de-identified client cases. A 27-item pre-post survey was used to assess changes in behaviors, self-efficacy, and barriers to navigation. Results: A total of 40 participants completed both the pre- and post-surveys. Participants were predominantly female (98%), White (55%) or Black (30%), and non-Hispanic (68%). The majority were affiliated with community-based organizations (50%), as well as health departments (19%), and hospitals/cancer centers (19%) serving urban (50%) and suburban (33%) communities. Survey results indicate an average increase of 24% in self-efficacy, with the greatest increase in ability to serve as a consultant to others on cancer survivorship (38%), link survivors to appropriate resources and services (32%), explain how clinical trials work (32%), and work with survivors to address their needs (32%). Reductions in barriers to navigation included limited knowledge of cancer and cancer treatment (33%) and awareness of survivorship resources and services (34%). We found no change in behaviors or other barriers to navigation. Conclusions: The results of this study indicate the effectiveness of the VLC to build community-based capacity to deliver breast cancer survivorship navigation through increased navigator self-efficacy. No changes in behaviors suggests that navigators provide survivorship support whether or not they have training, and points to a key opportunity to increase their knowledge of evidence-based information and resources. Results of this research provide evidence to support recognition of the critical role of community navigators and reimbursement to ensure high quality, consistent community-based care for cancer survivors.
Availability of family caregiver support in U.S. cancer centers.
Authors: Odom James Nicholas , Applebaum Allison J , Bakitas Marie , Bryant Tara , Currie Erin , Curry Kayleigh , Donovan Heidi AS , Fernandez Maria , Ferrell Betty R. , Gray Tamryn , Hendricks Bailey , Meier Diane E. , Nightingale Chandylen L , Reinhard Susan , Sannes Timothy S. , Sterba Katherine R. , Young Heather 
Published: October 2023

218 Background: Family caregivers provide the majority of health care to the 18 million persons with cancer in the U.S. Yet despite providing complex medical and nursing care, a large proportion report no formal support or training. Recognizing this gap, many interventions to support cancer caregivers have been developed and tested over the past two decades and many have demonstrated effectiveness. However, there is little system-level data on whether U.S. cancer centers have adopted and implemented these interventions. We conducted the first national survey of Commission on Cancer (CoC)-accredited U.S. cancer centers to characterize the availability and types of family caregiver support programs. Methods: We conducted a mail and web-based survey of staff from CoC-accredited U.S. cancer centers regarding their family caregiver support programs (09/2021-03/2023). “Family caregiver programs” were defined as structured, planned, coordinated groups of activities and procedures aimed specifically at supporting family caregivers as part of usual care. Survey questions about 11 types of family caregiver programs (e.g., peer-mentoring, education classes, psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Results: Surveys were sent to potential respondents at 971 adult cancer centers and 238 were completed (response rate: 25%). Most cancer centers had at least 1 family caregiver program (178/238, 75.1%), which was most commonly “Information and Referral Services” (53.4%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (p<.05). Few centers had caregiver programs on: training in medical and/or nursing tasks (21.8%), caregiver self-care (20.3%), caregiver-specific distress screening (19.3%), peer mentoring (18.5%), and minor children caregiving for a parent (8.4%). Very few programs were developed from published evidence in a journal (7.9%). The top reason why cancer centers chose their programs was community members requesting the program (26.5%); only 11.8% chose their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.0%) or by philanthropy (42.4%). Conclusions: While most U.S. cancer centers had some family caregiver programs, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence-based, with few centers offering caregiver education and training. Implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions.
Understanding the unique needs of African American/Black caregivers.
Authors: Cannady Rachel , Beckwitt Asher , Prince Sabiyha , Maxwell Danielle 
Published: October 2023

220 Background: A lack of culturally responsive resources, systemic bias in the healthcare system, and a lack of understanding of culture means African American/Black (AAB) caregivers can face additional barriers to providing care. To address this enormous gap, the American Cancer Society (ACS) is leading the charge in the way support is delivered to AAB caregivers through qualitative inquiry to better understand their unique needs and challenges. Methods: Six focus groups with AAB caregivers (n=32) were conducted using the Zoom online platform to assess a) their perceptions of providing care to a person with cancer, b) their unmet needs, and c) their preferences for how best to meet their needs. NVivo 12 was used to store, code, query, and organize the data. Deductive codes were derived based on the research questions for the study. Data was also inductively coded to identify the categories and themes that emerged that did not fit into the research questions. Results: Participants were mostly female (90%), ≥ 55 years old (64%), employed full time (54%), and providing care to their mother with cancer (42%). The primary unmet need was related to their relationship with their loved one’s healthcare providers. Major themes identified: negative healthcare system perceptions, racism and discrimination, limited access to medication due to cost, provider insensitivity and dismissiveness, medical mistrust, and lack of informational resources. Caregivers highlighted the desire for timely information from the provider about the cancer diagnosis to better assist with treatment decisions. Early navigator involvement was also requested to assist them in advocating for the patient’s needs as well as their own. Conclusions: Caregivers are a critical part of the healthcare team. Providers should strive to deliver culturally competent care that acknowledges and respects the experiences, values, and beliefs of AAB caregivers. Themes that emerged from this study were used to develop topics for a 6-part ECHO Series aimed to address AAB caregiver needs at the system level. ACS will leverage these findings to develop information and resources targeted to AAB caregivers.
Engaging patient-family dyads to inform the development of a digital health intervention to support cancer caregivers.
Authors: Pozzar Rachel A. , Gray Tamryn , Underhill-Blazey Meghan , Nayak Manan , Ehrlich Olga , Haas Niina Mari , Enzinger Andrea Catherine , Hammer Marilyn J. , Berry Donna Lynn 
Published: October 2023

221 Background: Shifts in cancer care from hospital to home have increased the burden on family caregivers of individuals with cancer. Cancer caregiving is demanding and associated with declines in caregivers’ physical and psychological well-being. Digital health interventions may improve caregiver well-being by supporting them to monitor patient symptoms, access social support, and communicate with patients’ care team members. Despite benefits to quality care, few digital health interventions have been developed or implemented to support cancer caregivers. The purpose of this study was to develop a web-based intervention (myCare2) focused on supporting caregivers and caregiver well-being. Methods: This multi-method study followed a user-centered design. Participants were recruited from two clinics within one NCI-designated cancer center. We conducted three focus groups with patients with hematologic or gastrointestinal cancers and their caregivers to identify needs and preferences and guide intervention development. Next, we developed a wireframe prototype of myCare2. We iteratively refined the prototype in response to feedback obtained in cognitive interviews with patient-caregiver dyads. Lastly, we built a functioning web-based prototype and conducted user tests with dyads. Focus groups, cognitive interviews, and user tests were audio recorded, transcribed, and analyzed using conventional content analysis. Results: Eight dyads participated in three focus groups. Caregivers reported feeling unprepared and viewed themselves as “head of logistics” for the patient. Caregivers expressed the desire for a tool to help them organize caregiver responsibilities, including medication management, daily schedules and appointments, symptom monitoring, nursing and medical tasks, self-care, and communication with clinicians and support networks. In cognitive interviews, four dyads reviewed and provided positive feedback on the wireframe prototype features that allow the caregiver to schedule tasks; report patient and caregiver concerns; track patient symptoms and medications; ask family and friends for support; share updates with support networks; and find local resources, classes, and events. Five dyads tested myCare2, providing positive and constructive feedback about the intervention layout and functionality. Conclusions: Growing evidence suggests digital health interventions can benefit caregivers managing cancer care at home. The myCare2 intervention is a web-based tool based on caregiver and patient feedback that was found helpful and acceptable. Future research should evaluate the feasibility of myCare2, measure its effects on caregiver and patient outcomes, and identify optimal implementation strategies for use in practice.
Cancer and asset inheritance at the end of life in the United States.
Authors: Hussaini S. M. Qasim , Rodarte Cecilia , Nicholas Lauren H. 
Published: October 2023

225 Background: The cost of medical care in the United States is among the highest in the world and has risen in recent decades with trends toward greater cost-sharing from payors and higher out-of-pocket costs for individuals diagnosed with cancer. It is unclear if high healthcare expenses can also have a significant impact on the accumulation of wealth across generations, as families struggle to pay for medical care and may not have the financial resources to pass as inheritance or bequests. In this study, we investigated trends in asset inheritance following the death of a primary household member from cancer. Methods: We conducted a retrospective analysis of deaths among respondents in the Health and Retirement Study (HRS) through 2014. The HRS is a nationally representative, biennial and longitudinal survey of adults 50 and older and their spouses collected since 1992. We compared remaining estate size and familial bequests among those who died from cancer versus other causes of death using post-mortem interviews with next-of-kin proxy respondents. Results: Our sample included 10,196 deaths (mean age 78y) including 2752 cancer-related deaths (27.0%). Compared to those that died from non-cancer causes, those dying from cancer had higher OOP costs for doctor visits ($1244 vs $785; p < 0.05), and more often had not paid medical expenses (16.2% vs 9.7%; p < 0.05). Similar trends were noted for individuals that had a lifetime diagnosis of cancer. Higher rates of will completion were seen in patients with a history of cancer as well (p < 0.01). While higher homeownership at death was noted in this group compared to those without a history of cancer, those dying from cancer were less likely to sell their home or pass it as inheritance to a child, grandchild, or spouse. Unmarried/unpartnered respondents dying from cancer were also more likely to have reduced estate assets. Conclusions: We noted a striking loss of inheritance transfer resulting in reduced accumulation of generational wealth following death from cancer, or from a history of cancer in a household in the United States. These represent troubling findings and should inform an urgent need to prioritize policy-level solutions to reduce cost burden of receiving required care.