Search

PURPOSE: Financial hardship (FH) in cancer care is a growing challenge for patients, their caregivers, and health care providers with impact on morbidity and mortality. In this study, we report on a standardized approach to describe the prevalence and predictors for FH as part of routine clinical workflow. We also report on the association of FH with survival in our cancer patient population. METHODS: This study includes patients who completed a FH screen at least once between 2018 and 2020. Demographics, disease state, and mortality data were extracted from the medical records. Multivariable logistic regression models were used to examine association of sociodemographic and disease variables with FH. By using propensity score weighting to account for differences in demographic and clinical factors between patients with and without FH, we then fit Cox proportional hazards models to examine the relationship between FH and survival. RESULTS: The study cohort included 31,154 patients. FH was reported by 14% (n = 4,250) of the patients. A significantly higher likelihood of having FH ( P < .001 for all) was reported by racial/ethnic minority patients; those who were unemployed/disabled, single, or divorced; patients from disadvantaged neighborhoods; and those who were self-pay or had government insurance. Older age, being retired, and living farther from the cancer center were associated with significantly less likelihood of endorsing FH. Patients who endorsed FH had a lower survival (hazard ratio for mortality 1.46). CONCLUSION: Our study identified key groups more likely to report FH in a relatively affluent population at a large cancer center and showed an adverse association between FH and survival. Further research is needed to develop clinical care pathways for patients at high risk for worse financial and clinical outcomes.

Episodes of lucidity (ELs) in Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD), have garnered increasing attention as an important area of research. Efforts to study lucidity suffer from a lack of clear definitional criteria, inconsistent conceptualization, and diverse approaches to operationalizing features of these events. To advance systematic investigation of ELs in AD/ADRD, there is a need for clarity and precision in labeling event attributes, markers, and specific measurement strategies that enable operational harmonization across distinct approaches to investigating the relatively broad and nascent phenomenon. To that end, we propose a preliminary research framework to guide harmonization of approaches to investigating ELs in AD/ADRD. Our goal is to provide an initial schematic that encourages uniform labeling of operational decisions about ELs.

BACKGROUND Innovative care models are needed to address gaps in kidney care follow-up among acute kidney injury (AKI) survivors. We developed the multidisciplinary AKI in Care Transitions (ACT) program, which embeds post-AKI care in patients’ primary care clinic. OBJECTIVE The objective of this randomized pilot trial is to test the feasibility and acceptability of the ACT program and study protocol, including recruitment and retention, procedures, and outcome measures. METHODS The study will be conducted at Mayo Clinic in Rochester, Minnesota, a tertiary care center with a local primary care practice. Individuals who are included have stage 3 AKI during their hospitalization, do not require dialysis at discharge, have a local primary care provider, and are discharged to their home. Patients unable or unwilling to provide informed consent and recipients of any transplant within 100 days of enrollment are excluded. Consented patients are randomized to receive the intervention (ie, ACT program) or usual care. The ACT program intervention includes predischarge kidney health education from nurses and coordinated postdischarge laboratory monitoring (serum creatinine and urine protein assessment) and follow-up with a primary care provider and pharmacist within 14 days. The usual care group receives no specific study-related intervention, and any aspects of AKI care are at the direction of the treating team. This study will examine the feasibility of the ACT program, including recruitment, randomization and retention in a trial setting, and intervention fidelity. The feasibility and acceptability of participating in the ACT program will also be examined in qualitative interviews with patients and staff and through surveys. Qualitative interviews will be deductively and inductively coded and themes compared across data types. Observations of clinical encounters will be examined for discussion and care plans related to kidney health. Descriptive analyses will summarize quantitative measures of the feasibility and acceptability of ACT. Participants’ knowledge about kidney health, quality of life, and process outcomes (eg, type and timing of laboratory assessments) will be described for both groups. Clinical outcomes (eg, unplanned rehospitalization) up to 12 months will be compared with Cox proportional hazards models. RESULTS This study received funding from the Agency for Health Care Research and Quality on April 21, 2021, and was approved by the Institutional Review Board on December 14, 2021. As of March 14, 2023, seventeen participants each have been enrolled in the intervention and usual care groups. CONCLUSIONS Feasible and generalizable AKI survivor care delivery models are needed to improve care processes and health outcomes. This pilot trial will test the ACT program, which uses a multidisciplinary model focused on primary care to address this gap. CLINICALTRIAL ClinicalTrials.gov NCT05184894; https://www.clinicaltrials.gov/ct2/show/NCT05184894 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/48109

To examine and compare health care provider perceptions for integrating family caregivers into patient encounters and other processes of care by medical specialty.Data were from 19 interviews conducted in 2018, 10 with primary care or palliative care providers and nine with proceduralists or interventionists in practices located in Minnesota, Florida, and Arizona.This was a qualitative study using data collected from one-on-one, semi-structured interviews with physicians.By using purposeful "maximum variation" sampling to capture differences between primary and palliative care providers and proceduralists/interventionists, data were collected, reviewed, coded, and then analyzed using inductive content analysis with a constant comparison approach.Primary care providers described a lack of organizational and institutional resources to support caregivers. Accordingly, they were compelled to curb caregiver engagement in order to meet patients' clinical care needs within the time and workflow demands in encounters. Proceduralists and interventionists described the need to assess caregivers for suitability to provide care during intense periods of treatment. They reported having access to more formal organizational resources for supporting caregivers. Overall, providers described a paradox, where caregivers are seen as contributing value to patient encounters until they need training, education, or support to provide care, at which point they become burdensome and require more time and resources than are typically available.Results highlight how organizational constraints inhibit caregiver engagement in patient encounters and influence provider attitudes about engaging caregivers and assessing their unmet needs. Findings also provide insights into challenges across practice types for implementing state and federal laws that promote caregiver engagement.

IMPORTANCE: Despite availability of safe and effective human papillomavirus (HPV) vaccines, vaccination uptake remains low in the U.S. Research examining the impact of neighborhood socioeconomic status on HPV vaccination may help target interventions. OBJECTIVE: To examine the association between area deprivation and HPV vaccine initiation and completion. DESIGN, SETTING, PARTICIPANTS: Retrospective cohort study of individuals aged 11–18 years residing in the upper Midwest region. Receipt of HPV vaccination was examined over a three-year follow-up period (01/01/2016–12/31/2018). MAIN OUTCOMES AND MEASURES: Outcomes of interest were initiation and completion of HPV vaccination. Demographic data were collected from the Rochester Epidemiology Project (REP). Area-level socioeconomic disadvantage was measured by calculating an Area Deprivation Index (ADI) score for each person, a measure of socioeconomic disadvantage derived from American Community Survey data. Multivariable mixed effect Cox proportional hazards models were used to examine the association of ADI quartiles (Q1-Q4) with HPV vaccine series initiation and completion given initiation. RESULTS: Individuals residing in census block groups with higher deprivation had significantly lower likelihood of HPV vaccine initiation (Q2: HR=0.91, 0.84–0.99 Q3: HR= 0.83, 0.76–0.90; Q4: HR=0.84, 0.74–0.96) relative to those in the least-deprived block groups (Q1). Similarly, those living in block groups with higher deprivation had significantly lower likelihood of completion (Q2: HR=0.91, 0.86–0.97; Q3: HR= 0.87, 0.81–0.94; Q4: HR=0.82, 0.74–0.92) compared to individuals in the least-deprived block groups (Q1). CONCLUSIONS AND RELEVANCE: Lower probability of both HPV vaccine-series initiation and completion were observed in areas with greater deprivation. Our results can inform allocation of resources to increase HPV vaccination rates in our primary care practice and provide an example of leveraging public data to inform similar efforts across diverse health systems.

To assess health care provider (HCP) preferences related to colorectal cancer (CRC) screening overall, and by HCP and patient characteristics.We developed a survey based on the Theoretical Domains Framework to assess factors associated with CRC screening preferences in clinical practice. The survey was administered online November 6 through December 6, 2019, to a validated panel of HCPs drawn from US national databases and professional organizations. The final analysis sample included 779 primary care clinicians (PCCs) and 159 gastroenterologists (GIs).HCPs chose colonoscopy as their preferred screening method for average-risk patients (96.9% (154/159) for GIs, 75.7% (590/779) for PCCs). Among PCCs, 12.2% (95/779) preferred multi-target stool DNA (mt-sDNA), followed by fecal immunochemical test (FIT), (7.3%; 57/779) and guaiac-based fecal occult blood test (gFOBT) (4.8%; 37/779). Preference among PCCs and GIs generally shifted toward noninvasive screening options for patients who were unable to undergo invasive procedures; concerned about taking time from work; unconvinced about need for screening; and refusing other screening recommendations. Among PCCs, preference for mt-sDNA over FIT and gFOBT was less frequent in larger compared with smaller clinical practices. Additionally, preference for mt-sDNA over FIT was more likely among PCCs with more years of clinical experience, higher patient volumes (25/day), and practice locations in suburban and rural settings (compared to urban).Both PCCs and GIs preferred colonoscopy for CRC screening of average-risk patients, although PCCs did so less frequently and with approximately a quarter preferring stool-based tests (particularly mt-sDNA). PCCs' preference varied by provider and patient characteristics. Our findings underscore the importance of informed choice and shared decision-making about CRC screening options.

Introduction: Health promotion programs focused on cardiovascular disease are underutilized with im/migrants. The one-time referral to group-based interventions model ignores (1) the complex sociocultural influences on behavior change and (2) the socio-historical context of migration, racialization of immigrants and refugees, and the roles these play in differential social integration of refugees. One solution may be to apply community-based participatory research (CBPR) and Public Health Critical Race Praxis (PHCRP) to social network interventions with opinion leaders. Yet, these interventions are challenging to scale. There is a critical need to understand how to scale community-driven social network interventions to effectively address cardiovascular disease inequities resulting from systemic racism experienced by im/migrant populations. Developed using CBPR and informed by PHCRP, this work builds upon Healthy Immigrant Community (HIC), a collaborative effort between Latinx and Somali im/migrant partners and Rochester Healthy Community Partnership. Our aim is to explore opinion leader recruitment, their characteristics, and expectations for HIC scale-up. Qualitative Hypothesis: Learning more about the opinion leaders’ background and experience in the Healthy Immigrant Community social network intervention will prepare us for a future efficacy study. Methods: We conducted a process evaluation by: (1) interviewing community partners who recruited opinion leaders (n=8) and (2) conducting three pre-intervention focus groups with opinion leaders (Latinx n=4; Somali women n=8; Somali men n=8). We used PHCRP to deductively form codes yet allowed for new ideas that arose from the data by inductively generating additional codes. Results: Interview participants described their decision-making process, qualities considered, recruitment strategies, and expectations for an implementation study. Focus group participants discussed their personal motivations for participation, how they hoped the study would help their community, and the barriers to health they experience because of structural determinism (macro-level forces that sustain inequities). Conclusions: This work will enhance our ability to translate HIC to other communities by expanding our knowledge of opinion leader characteristics that are important in a community-driven, social network intervention. Because social network interventions have been demonstrated to cause positive behavior change, further adapting these interventions in a community setting would be expected to provide a more effective approach compared to individually targeted behavior change strategies. Additionally, selecting OLs is neither time nor resource intensive and could enhance organizational strategies for implementing health promotion programming.

Background The symptom burden associated with cancer and its treatment can negatively affect patients’ quality of life and survival. Symptom-focused collaborative care model (CCM) interventions can improve outcomes, but only if patients engage with them. We assessed the receptivity of severely symptomatic oncology patients to a remote nurse-led CCM intervention. Methods In a pragmatic, cluster-randomized, stepped-wedge trial conducted as part of the National Cancer Institute IMPACT Consortium (E2C2, NCT03892967), patients receiving cancer care were asked to rate their sleep disturbance, pain, anxiety, emotional distress, fatigue, and limitations in physical function. Patients reporting at least 1 severe symptom (≥7/10) were offered phone consultation with a nurse symptom care manager (RN SCM). Initially, patients had to “opt-in” to receive a call, but the protocol was later modified so they had to “opt-out” if they did not want a call. We assessed the impact of opt-in vs opt-out framing and patient characteristics on receptiveness to RN SCM calls. All statistical tests were 2-sided. Results Of the 1204 symptom assessments (from 864 patients) on which at least 1 severe symptom was documented, 469 (39.0%) indicated receptivity to an RN SCM phone call. The opt-out period (odds ratio [OR] = 1.61, 95% confidence interval [CI] = 1.12 to 2.32, P = .01), receiving care at a tertiary care center (OR = 3.59, 95% CI = 2.18 to 5.91, P < .001), and having severe pain (OR = 1.80, 95% CI = 1.24 to 2.62, P = .002) were associated with statistically significantly greater willingness to receive a call. Conclusions Many severely symptomatic patients were not receptive to an RN SCM phone call. Better understanding of reasons for refusal and strategies for improving patient receptivity are needed.

Managing the complex care needs of seriously ill patients transitioning from hospital to home can have detrimental effects on family caregivers (FCG). Multi-component interventions tailored to FCG needs are most effective at reducing caregiver burden, distress, and depression. However, gaps exist in determining best methods to assess, document, and analyze intervention components for FCGs. Common methods used to capture patient data during transitions in care may not be appropriate or allowed for FCG needs. As such, we present a methodological approach for electronically capturing, reporting, and analyzing multiple intervention components. This approach uses a standardized terminology and pathway for tailoring intervention components in real time while evaluating intervention effects across time. We use examples from a randomized controlled trial to illustrate the benefits of the current approach for analyzing the effectiveness of multi-component interventions in the context of caregiving research.

Background Despite overall declines in cancer mortality in the USA over the past three decades, many patients in community settings fail to receive evidence-based cancer care. Networks that link academic medical centers (AMCs) and community providers may reduce disparities by creating access to specialized expertise and care, but research on network effectiveness is mixed. The objective of this study was to identify factors related to whether and how an exemplar AMC network served to provide advice and referral access in community settings. Methods An embedded in–depth single case study design was employed to study a network in the Midwest USA that connects a leading cancer specialty AMC with community practices. The embedded case units were a subset of 20 patients with young-onset colorectal cancer or risk-related conditions and the providers involved in their care. The electronic health record (EHR) was reviewed from January 1, 1990, to February 28, 2018. Social network analysis identified care, advice, and referral relationships. Within-case process tracing provided detailed accounts of whether and how the network provided access to expert, evidence-based care or advice in order to identify factors related to network effectiveness. Results The network created access to evidence-based advice or care in some but not all case units, and there was variability in whether and how community providers engaged the network, including the path for referrals to the AMC and the way in which advice about an evidence-based approach to care was communicated from AMC specialists to community providers. Factors related to instances when the network functioned as intended included opportunities for both rich and lean communication between community providers and specialists, coordinated referrals, and efficient and adequately utilized documentation systems. Conclusions Network existence alone is insufficient to open up access to evidence-based expertise or care for patients in community settings. In-depth understanding of how this network operated provides insight into factors that support or inhibit the potential of networks to minimize disparities in access to evidence-based community cancer care, including both personal and organizational factors.

Health information technology (HIT) is a widely recognized strategy to encourage cancer patients and caregivers to participate in healthcare delivery in a sustainable and cost-effective way. In the context of autologous hematopoietic cell transplant (HSCT), HIT-enabled tools have the potential to effectively engage, educate, support, and optimize outcomes of patients and caregivers in the outpatient setting. This study sought to leverage human-centered design to develop a high-fidelity prototype of a HIT-enabled psychoeducational tool for HSCT caregivers. Phase 1 focuses on breadth and depth of information gathering through a systematic review and semi-structured interviews to determine optimal tool use. Phase 2 engages in human-centered design synthesis and visualization methods to identify key opportunities for the HIT design. Phase 3 employs human-centered design evaluation, engaging caregivers to respond to low-fidelity concepts and scenarios to help co-design an optimal tool for HSCT. This study outlines a hybrid method of healthcare delivery research and human-centered design to develop technology-enabled support for HSCT caregivers. Herein, we present a design methodology for developing a prototype of HIT-enabled psychoeducational tool which can be leveraged to develop future eHealth innovations to optimize HSCT.

Colorectal cancer (CRC) screening among average-risk patients is underused in the US. Clinician recommendation is strongly associated with CRC screening completion. To inform interventions that improve CRC screening uptake among average-risk patients, we examined clinicians' routine recommendations of 7 guideline-recommended screening methods and factors associated with these recommendations.We conducted an online survey in November and December 2019 among a sample of primary care clinicians (PCCs) and gastroenterologists (GIs) from a panel of US clinicians. Clinicians reported whether they routinely recommend each screening method, screening method intervals, and patient age at which they stop recommending screening. We also measured the influence of various factors on screening recommendations.Nearly all 814 PCCs (99%) and all 159 GIs (100%) reported that they routinely recommend colonoscopy for average-risk patients, followed by stool-based tests (more than two-thirds of PCCs and GIs). Recommendation of other visualization-based methods was less frequent (PCCs, 26%-35%; GIs, 30%-41%). A sizable proportion of clinicians reported guideline-discordant screening intervals and age to stop screening. Guidelines and clinical evidence were most frequently reported as very influential to clinician recommendations. Factors associated with routine recommendation of each screening method included clinician-perceived effectiveness of the method, clinician familiarity with the method, Medicare coverage, clinical capacity, and patient adherence.Clinician education is needed to improve knowledge, familiarity, and experience with guideline-recommended screening methods with the goal of effectively engaging patients in informed decision making for CRC screening.

Colorectal cancer (CRC) screening is underutilized despite evidence that screening improves survival. Since healthcare provider recommendation is a strong predictor of CRC screening completion, providers are encouraged to engage eligible patients in collaborative decision-making that attends to patients' values, needs, and preferences for guideline-concordant screening modalities.This three-arm randomized controlled trial is testing the effectiveness of an evidence-based video intervention informing patients of screening choices delivered in a clinic prior to a healthcare appointment. We hypothesize that participants randomized to watch a basic video describing CRC and screening in addition to an informed choice video showing the advantages and disadvantages of fecal immunochemical test (FIT), stool DNA FIT (s-DNA FIT), and colonoscopy (Arm 3) will exhibit a greater proportion of time adherent to CRC screening guidelines after 1, 3 and 6 years than those who only watch the basic video (Arm 2) or no video at all (Arm 1). Primary care and Obstetrician/Gynecology clinics across the United States are recruiting 5280 patients, half who have never been screened and half who previously screened but are currently not guideline adherent. Participants complete surveys prior to and following an index appointment to self-report personal, cognitive, and environmental factors potentially associated with screening. Proportion of time adherent to screening guidelines will be assessed using medical record data and supplemented with annual surveys self-reporting screening.Results will provide evidence on the effectiveness of informational and motivational videos to encourage CRC screening that can be easily integrated into clinical practice.gov #NCT05246839.

Background The prevalence of inadequate symptom control among cancer patients is quite high despite the availability of definitive care guidelines and accurate and efficient assessment tools. Methods We will conduct a hybrid type 2 stepped wedge pragmatic cluster randomized clinical trial to evaluate a guideline-informed enhanced, electronic health record (EHR)-facilitated cancer symptom control (E2C2) care model. Teams of clinicians at five hospitals that care for patients with various cancers will be randomly assigned in steps to the E2C2 intervention. The E2C2 intervention will have two levels of care: level 1 will offer low-touch, automated self-management support for patients reporting moderate sleep disturbance, pain, anxiety, depression, and energy deficit symptoms or limitations in physical function (or both). Level 2 will offer nurse-managed collaborative care for patients reporting more intense (severe) symptoms or functional limitations (or both). By surveying and interviewing clinical staff, we will also evaluate whether the use of a multifaceted, evidence-based implementation strategy to support adoption and use of the E2C2 technologies improves patient and clinical outcomes. Finally, we will conduct a mixed methods evaluation to identify disparities in the adoption and implementation of the E2C2 intervention among elderly and rural-dwelling patients with cancer. Discussion The E2C2 intervention offers a pragmatic, scalable approach to delivering guideline-based symptom and function management for cancer patients. Since discrete EHR-imbedded algorithms drive defining aspects of the intervention, the approach can be efficiently disseminated and updated by specifying and modifying these centralized EHR algorithms. Trial registration ClinicalTrials.gov, NCT03892967. Registered on 25 March 2019.

Objective To assess how staff attitudes before, during, and after implementation of a real-time location system (RTLS) that uses radio-frequency identification tags on staff and patient identification badges and on equipment affected staff's intention to use and actual use of an RTLS. Participants and Methods A series of 3 online surveys were sent to staff at an emergency department with plans to implement an RTLS between June 1, 2015, and November 29, 2016. Each survey corresponded with a different phase of implementation: preimplementation, midimplementation, and postimplementation. Multiple logistic regression with backward elimination was used to assess the relationship between demographic variables, attitudes about RTLSs, and intention to use or actual use of an RTLS. Results Demographic variables were not associated with intention to use or actual use of the RTLS. Before implementation, poor perceptions about the technology's usefulness and lack of trust in how employers would use tracking data were associated with weaker intentions to use the RTLS. During and after implementation, attitudes about the technology's use, not issues related to autonomy and privacy, were associated with less use of the technology. Conclusion Real-time location systems have the potential to assess patterns of health care delivery that could be modified to reduce costs and improve the quality of care. Successful implementation, however, may hinge on how staff weighs attitudes and concerns about their autonomy and personal privacy with organizational goals. With the large investments required for new technology, serious consideration should be given to address staff attitudes about privacy and technology in order to assure successful implementation.

There are limited data on patient experience after chimeric antigen receptor (CAR) T-cell therapy, especially in comparison to autologous and allogeneic transplantation, which are more established forms of cellular therapy. We prospectively evaluated longitudinal patient-reported quality of life (QoL), symptom burden and cognition after CAR-T cell therapy and compared it with prospective cohorts of patients undergoing autologous stem cell transplantation (autoSCT) and allogeneic SCT (alloSCT). This was a single center study. The primary endpoint was change in QoL. Secondary endpoints were patient-reported adverse events (PRO-AEs) measured by Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) and cognitive function (NeuroQOLv2 questionnaire). Time profile of PRO-AEs was evaluated using longitudinal analysis, Toxicity over Time (ToxT). Patients completed questionnaires at baseline, week 2 and monthly for 6 months. One hundred four patients were evaluable (CAR-T: 34, autoSCT: 33, alloSCT: 37). Baseline QoL was similar across groups. We observed a short-term decline in QoL in all groups that gradually returned to baseline. The nadir in QoL was at week 2 and coincided with peak in symptom burden. The decline in overall QoL, physical and functional well-being was significantly less with CAR-T versus SCT groups and returned to baseline faster. Patients in the alloSCT group experienced the greatest symptom burden, greater decrease in performance status, largest short-term decline in QoL and slowest recovery. This study provides comprehensive data comparing QoL, PRO-AEs and cognition following CAR-T cell therapy versus autoSCT and alloSCT, and the first application of ToxT to PRO-CTCAE data. Short-term QOL, including physical and functional domains was better in the CAR-T group versus SCT groups, although all groups experienced an initial decline coinciding with peak symptoms. These data can serve as a guide for patient education, symptom management, and future studies in CAR-T cell therapy.

Background Colorectal cancer (CRC) screening for average risk adults age 45 and older continues to be underutilized in the USA. One factor consistently associated with CRC screening completion is clinician recommendation. Understanding the barriers and facilitators of clinical adoption of emerging CRC screening strategies is important in developing effective intervention strategies to improve CRC screening rates. We aimed to develop a questionnaire based on the Theoretical Domains Framework (TDF) to assess determinants of clinical adoption of novel CRC screening strategies, using the multi-target stool DNA test (mt-sDNA; Cologuard®) as an example, and test the psychometric properties of this questionnaire on a sample of US clinicians. Methods A web survey was administered between November and December 2019 to a national panel of clinicians including primary care clinicians (PCCs) and gastroenterologists (GIs) to assess 10 TDF constructs with 55 items. Confirmatory factor analysis (CFA) was used to examine whether the a priori domain structure was supported by the data. Discriminant validity of domains was tested with Heterotrait-Monotrait ratio (HTMT). Internal consistency for each scale was assessed using Cronbach’s alpha. Criterion validity was assessed with self-reported mt-sDNA use and mt-sDNA recommendation as the outcomes. Results Complete surveys were received from 814 PCCs and 159 GIs (completion rate, 24.7% of 3299 PCCs and 29.6% of 538 GIs). Providers were excluded from analysis if they indicated not recommending CRC screening to average-risk patients (final N = 973). The final questionnaire consisted of 38 items covering 5 domains: (1) knowledge; (2) skills; (3) identity and social influence; (4) optimism, beliefs about consequences, and intentions; and (5) environmental context and resources. CFA results confirmed a reasonable fit (CFI = 0.948, SRMR = 0.057, RMSEA = 0.080). The domains showed sufficient discriminant validity (HTMT < 0.85), good internal consistency (McDonald’s omega > 0.76), and successfully differentiated providers who reported they had ordered mt-sDNA from those who never ordered mt-sDNA and differentiated providers who reported routinely recommending mt-sDNA from those who reported not recommending mt-sDNA. Conclusions Findings provide initial evidence for the validity and internal consistency of this TDF-based questionnaire in measuring potential determinants of mt-sDNA adoption for average-risk CRC screening. Further investigation of validity and reliability is needed when adapting this questionnaire to other novel CRC screening strategy contexts.

419 Background: The patient portal is part of an electronic health record (EHR) that allows patients to communicate with their healthcare team. The portal also provides a platform for patients to receive and complete symptom surveys that can be directly integrated into the EHR, allowing clinical care teams to monitor symptoms and provide cancer symptom management. The Improving Management of symPtoms during And following Cancer Treatment (IMPACT) consortium, supported by the National Cancer Institute’s Cancer MoonshotSM, aims to improve symptom control for cancer patients through assessment and symptom management interventions deployed via the EHR. This initiative presents an opportunity to examine portal enrollment and variation in use, factors critical to successful implementation, especially among groups that have high cancer symptom burden. To this end, we examine: 1) relationships between portal enrollment prior to the launch of IMPACT interventions and neighborhood broadband access, demographic, and social characteristics; and 2) frequency of pre-intervention portal use for any purpose among enrollees. Methods: Data are derived from two of three IMPACT research centers. Enrollment in and frequency of portal use, mode of accessing the portal (web vs. phone), social, demographic, and cultural factors were extracted from the EHR. Rural Urban Commuting Area (RUCA) codes were used to classify population density and degree of rurality. Broadband access was estimated using 2015-2019 American Community Survey estimates matched to zip codes from enrolled IMPACT patients and classified as a patient’s residence being in a community with high (≥85% of households) or low (< 85% of households) access. Bivariate comparisons and adjusted odds ratios were used to describe all associations. Results: Forty-seven percent of patients (22,596/48,034) were enrolled in the portal prior to the intervention. Patients in zip codes with low broadband access and those who were men, > 65 years old, not White, of Hispanic ethnicity, or disabled or not employed had significantly lower odds of being enrolled in the portal. If enrolled, 21% (n = 4825) used the portal at least once a week. Less variation was found in the average frequency of portal use, but patients younger than 40, and those who were Black, disabled, unemployed, or those who used a mobile device to access the portal had the lowest odds of accessing it at least once a week. Conclusions: Significant disparities in portal enrollment exist across demographic groups and among those with limited broadband access. Among those enrolled, most used the portal less than once a week. Fewer differences in frequency of use were observed by sociodemographic factors. Improving portal enrollment and frequency of use may be critical for symptom management interventions deployed via patient portals.

Little is known about how family caregivers who witness unexpected and spontaneous communication among people in late stages of Alzheimer's disease and related dementias (ADRD) appraise these episodes of lucidity (EL).In an electronic, cross-sectional survey for former and current caregivers who participate in UsAgainstAlzheimer's A-LISTCaregivers reported 72% of ELs to be quite a bit or very positive, 17% to be stressful, and 10% to be both stressful and positive. Twelve percent of caregivers changed care plans because of ELs and 13% sought out information about ELs.These exploratory data suggest caregiver reactions to EL vary. Caregivers may change or postpone care decisions due to EL, and few resources exist to address caregiver queries about EL.

While colorectal cancer (CRC) mortality rates have been decreasing, disparities by socioeconomic status (SES) and race/ethnicity persist. CRC screening rates remain suboptimal among low SES and racial/ethnic minority populations, despite the availability of multiple screening modalities. Understanding awareness, knowledge, and utilization of common screening modalities within different racial/ethnic and SES groups is critical to inform efforts to improve population screening uptake and reduce disparities in CRC-related health outcomes. Through the theoretical lenses of diffusion of innovation and fundamental cause theory, we examined the associations of race/ethnicity and SES with awareness, knowledge, and utilization of three guideline recommended CRC screening strategies among individuals at average risk for CRC. Data were obtained from a survey of a nationally representative panel of US adults conducted in November 2019. The survey was completed by 31.3% of invited panelists (1595 of 5097). Analyses were focused on individuals at average risk for CRC, aged 45–75 for awareness and knowledge outcomes (n = 1062) and aged 50–75 for utilization outcomes (n = 858). Analyses revealed racial/ethnic and SES disparities among the three CRC screening modalities, with more racial/ethnic and SES differences observed in the awareness, knowledge, and utilization of screening colonoscopy and mt-sDNA than FIT/gFOBT. Patterns of disparities are consistent with previous research showing that inequities in social and economic resources are associated with an imbalanced adoption of medical innovations. Our findings demonstrate a need to increase awareness, knowledge, and access of various CRC screening modalities in specific populations defined by race/ethnicity or SES indicators. Efforts to increase CRC screening should be tailored to the needs and social-cultural context of populations. Interventions addressing inequalities in social and economic resources are also needed to achieve more equitable adoption of CRC screening modalities and reduce disparities in CRC-related health outcomes., Highlights • Socioeconomic status linked to screening method awareness gap, notably mt-sDNA. • Screening modalities with low demand on patient resources more likely to be adopted. • Screening education needs to emphasize uniform starting age for all modalities. • Tailoring education to low resource communities may improve screening uptake.

PURPOSE: We aimed to better understand how similarly patients with colorectal cancer and caregivers view care quality and to assess factors that may influence concordance. MATERIALS AND METHODS: We conducted a secondary analysis of paired patient and caregiver quality ratings of colorectal cancer care in three specific domains: surgery, chemotherapy overall, and chemotherapy nursing. Agreement was assessed with difference scores, concordance with Gwet second-order agreement statistics (AC2), and variation in agreement with stratified analyses. We examined whether the care experiences of patients and caregivers were associated with top-box (most-positive) ratings and examined variations in concordance on the basis of the presence of a top-box score. RESULTS: Four hundred seventeen patient-caregiver dyads completed the surveys. Quality-of-care ratings were positively skewed, with most dyads indicating top-box ratings. Patient and caregiver care experiences were highly associated with top-box ratings. Overall patient-caregiver concordance was very high for all three care domains (surgery: AC2, 0.87 [95% CI, 0.83 to 0.90]; chemotherapy overall: AC2, 0.84 [95% CI, 0.79 to 0.88]; chemotherapy nursing: AC2, 0.91 [95% CI, 0.87 to 0.94]). Stratified analyses of patient and caregiver characteristics did not identify any patterns that consistently affected concordance. The concordance statistic significantly decreased for all three outcomes ( P < .001), however, when the patient or caregiver assessed quality as anything other than top box. CONCLUSION: Caregiver and patient reports on care quality were highly concordant for top-box care and did not vary with patient or caregiver factors. Additional exploration is needed to identify reasons for increased variability when the quality scores were less than a top-box response.

Family caregivers are essential partners for patients undergoing hematopoietic cell transplantation (HCT). The caregiving role is emotionally, physically, and financially demanding. Intervention efforts to provide relief for caregiver stress during HCT are highly warranted. Storytelling interventions are accruing evidence for efficacy in therapeutic contexts. The purpose of this study was to conduct a 3-full consecutive day digital storytelling (DST) workshop to build knowledge on caregivers' lived experiences during HCT, to pilot test DST with a small group of HCT caregivers, and to demonstrate feasibility and acceptability using qualitative and quantitative measures. Six adult caregivers of allogeneic HCT recipients (mean age, 60.2 years) attended a 3-day DST program (66% female, 83% white). All successfully created their personal audiovisual digital story (2 to 3 minutes long) and completed a survey. All participants rated the DST workshop as highly acceptable and therapeutic (mean score 5, on a scale of 1 to 5). Group discussions and interviews with participants further demonstrated high satisfaction and acceptability of the workshop format, setting, process, and structure. The survey results showed decreases in anxiety and depression from before to after the DST workshop with all participants showing change in the expected direction. This study demonstrates the feasibility and acceptability of a 3-day DST workshop as a distress-relieving tool for HCT caregivers. Future research is needed to test the efficacy of DST relative to a control condition.

Patient-reported financial hardship is an increasing challenge in cancer care delivery. Health insurance literacy and its association with financial hardship in patients with cancer, especially after controlling for financial literacy, have not been well examined.To examine the prevalence of and factors in the association between health insurance literacy and financial literacy as well as the overall and individual domains of financial hardship and their association with health insurance literacy, both independently and when adjusted for financial literacy, in patients with cancer.This cross-sectional survey study recruited and enrolled patients from 2 separate ambulatory infusion centers at Mayo Clinic Arizona in Phoenix, Arizona, and the University of Mississippi Medical Center in Jackson, Mississippi. Adult patients aged 18 years or older were enrolled from December 2019 to February 2020 and from August to October 2020 at Mayo Clinic Arizona (n = 299) and from September 2020 through January 2021 at the University of Mississippi Medical Center (n = 105). Survey respondents received a $5 gift card.Surveys included questions about sociodemographic characteristics, health insurance literacy and financial literacy, financial knowledge, and financial hardship and its domains (material hardship, psychological hardship, and behavioral hardship).Financial hardship was assessed using the COST-FACIT (Comprehensive Score for Financial Toxicity-Functional Assessment of Chronic Illness Therapy) measure and National Health Interview Survey questions to capture information about the domains of financial hardship. The Health Insurance Literacy Measure is a validated 21-item measure of a consumer's ability to select and use health insurance. Five questions from the National Financial Capability Study assessed financial literacy.A total of 404 participants were enrolled in the study. Median (IQR) age of the respondents was 63 (54-71) years, and 219 were women (54%), 307 were non-Hispanic White individuals (76%), 153 (38%) had private insurance, and 289 (72%) had solid tumors. Overall financial hardship (denoted by median COST-FACIT score27 points) was reported by 49% (95% CI, 44%-53%) of the cohort. Prevalence of financial hardship was higher using the National Health Interview Survey questions, with 68% (95% CI, 63%-72%) of respondents reporting at least 1 hardship domain (n = 276). Sixty-six percent (95% CI, 60%-69%) of respondents (n = 265) had a high level of financial literacy. The mean (SD) Health Insurance Literacy Measure score was 64.9 (13.3) points. In multivariable analyses, each 10-point increase in the Health Insurance Literacy Measure score was associated with lower odds of financial hardship (odds ratio, 0.82; 95% CI, 0.68-0.99; P = .04). However, this association was no longer significant after adjusting for financial literacy.Results of this study showed that, despite a high level of health insurance literacy and financial literacy, the prevalence of financial hardship was high. Although there were lower odds of financial hardship with increased health insurance literacy, the association was no longer significant when financial literacy was added to the model, suggesting that a high level of financial literacy may help mitigate the adverse outcome of lower health insurance literacy levels in patients with cancer.

IntroductionAcute kidney injury (AKI) affects nearly 20% of all hospitalised patients and is associated with poor outcomes. Long-term complications can be partially attributed to gaps in kidney-focused care and education during transitions. Building capacity across the healthcare spectrum by engaging a broad network of multidisciplinary providers to facilitate optimal follow-up care represents an important mechanism to address this existing care gap. Key participants include nephrologists and primary care providers and in-depth study of each specialty’s approach to post-AKI care is essential to optimise care processes and healthcare delivery for AKI survivors.Methods and analysisThis explanatory sequential mixed-methods study uses survey and interview methodology to assess nephrologist and primary care provider recommendations for post-AKI care, including KAMPS (kidney function assessment, awareness and education, medication review, blood pressure monitoring and sick day education) elements of follow-up, the role of multispecialty collaboration, and views on care process-specific and patient-specific factors influencing healthcare delivery. Nephrologists and primary care providers will be surveyed to assess recommendations and clinical decision-making in the context of post-AKI care. Descriptive statistics and the Pearson’s χ2 or Fisher’s exact test will be used to compare results between groups. This will be followed by semistructured interviews to gather rich, qualitative data that explains and/or connects results from the quantitative survey. Both deductive analysis and inductive analysis will occur to identify and compare themes.Ethics and disseminationThis study has been reviewed and deemed exempt by the Institutional Review Board at Mayo Clinic (IRB 20–0 08 793). The study was deemed exempt due to the sole use of survey and interview methodology. Results will be disseminated in presentations and manuscript form through peer-reviewed publication.