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Objectives Previous studies have shown that a single question may identify individuals with inadequate health literacy. We evaluated and compared the performance of 3 health literacy screening questions for detecting patients with inadequate or marginal health literacy in a large VA population. Methods We conducted in-person interviews among a random sample of patients from 4 VA medical centers that included 3 health literacy screening questions and 2 validated health literacy measures. Patients were classified as having inadequate, marginal, or adequate health literacy based on the Short Test of Functional Health Literacy in Adults (S-TOFHLA) and the Rapid Estimate of Adult Literacy in Medicine (REALM). We evaluated the ability of each of 3 questions to detect: 1) inadequate and the combination of “inadequate or marginal” health literacy based on the S-TOFHLA and 2) inadequate and the combination of “inadequate or marginal” health literacy based on the REALM. Measurements and Main Results Of 4,384 patients, 1,796 (41%) completed interviews. The prevalences of inadequate health literacy were 6.8% and 4.2%, based on the S-TOHFLA and REALM, respectively. Comparable prevalences for marginal health literacy were 7.4% and 17%, respectively. For detecting inadequate health literacy, “How confident are you filling out medical forms by yourself?” had the largest area under the Receiver Operating Characteristic Curve (AUROC) of 0.74 (95% CI: 0.69–0.79) and 0.84 (95% CI: 0.79–0.89) based on the S-TOFHLA and REALM, respectively. AUROCs were lower for detecting “inadequate or marginal” health literacy than for detecting inadequate health literacy for each of the 3 questions. Conclusion A single question may be useful for detecting patients with inadequate health literacy in a VA population.

•Human papillomavirus (HPV) vaccination uptake remains low in the U.S.•Adolescents from disadvantaged areas are less likely to initiate and complete HPV vaccination.•This calls for focused attention on resource allocation and social determinants. 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. To examine the association between area deprivation and HPV vaccine initiation and completion. 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). 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. 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). 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.

Hispanic/Latinx individuals have high prevalence of type 2 diabetes and its complications yet often face barriers in accessing diabetes prevention and self-management interventions. One possible approach is to implement digital storytelling interventions, which involve narrative-driven videos made by individuals who have lived experience with particular conditions or illnesses. These stories can inspire viewers with similar life experiences to change behaviors or attitudes. Little is known about which characteristics influence how individuals respond to digital storytelling interventions with healthful behaviors and improved outcomes - information necessary to further tailor these interventions to improve type 2 diabetes outcomes. Previously, the Rochester Healthy Community Partnership used the digital storytelling process to develop Stories for Change Diabetes and tested intervention effectiveness. We conducted a secondary analysis to examine the sociodemographic and disease-related factors that affected participants' responses to the Stories for Change Diabetes intervention. Drawing on Social Cognitive Theory and Culture-Centric Health Promotion principles, we analyzed results from the 227 intervention participants stratified by whether they experienced a clinically meaningful decrease (>0.5%) in hemoglobin A1c between baseline and three-month follow-up. We then used multivariable logistic regressions to identify factors associated with change in hemoglobin A1c. Participants with diabetes duration <5 years and/or whose diabetes self-efficacy improved between baseline and 3-month follow-up were more likely to experience a meaningful decrease in hemoglobin A1c at three months (compared to participants without those characteristics). These findings will provide insight into how digital storytelling interventions can be effectively tailored to Hispanic/Latinx individuals most likely to benefit. Trial registration: Not applicable.

Patient-reported outcome measure (PROM) surveillance and collaborative care improve cancer symptom control. However, human resource requirements constrain their implementation and reach. Electronic health record (EHR) facilitation reduces resource needs and might allow population-level scaling. We aimed to assess the effect of EHR facilitation of PROM-directed collaborative care on clinical and health services outcomes. E2C2 was a cohort cluster-randomised, unblinded, stepped-wedge, pragmatic trial, in which we randomly assigned 15 clusters of medical oncology and haematology clinics in the USA sharing a common EHR, Epic, to five sequences to compare an intervention of remotely delivered electronic PROM (ePROM) symptom surveillance and EHR-facilitated collaborative care (ECC) management with a usual care (UC) control of ePROM surveillance alone. Sequences transitioned from the UC control to the ECC intervention state at 8-month intervals. All adult (aged ≥18 years) patients who received medical oncology or haematology care in a US multi-state health system were enrolled. All cancer stages, cancer types, and treatment phases were included, except for patients enrolled in hospice or with acute leukaemia. SPPADE symptoms (sleep interference, pain, impaired physical function, anxiety, depression, and energy deficit or fatigue) were assessed with 0–10-point numerical rating scales linked to clinical encounters. The prespecified co-primary outcomes were all post-baseline SPPADE scores, and clinically actionable scores (≥4/10), among participants who completed at least two ePROMs. The outcomes were assessed using multivariate regression of cluster-period mean SPPADE symptom scores against intervention exposure, baseline SPPADE scores, fixed-cluster, and secular time effects. The trial is registered at ClinicalTrials.gov (NCT03892967) and is now closed to recruitment. From March 28, 2019, to Jan 31, 2023, 50 207 patients were enrolled and administered ePROMs in association with oncology or haematology visits. In the analytical cohort of 24 874 participants, 10 390 (42%) were assigned ePROMS in both the ECC and UC periods. Of the 19 084 [77%] in the ECC group, 11 138 (58%) were female, 7946 (42%) were male, and 18189 (95%) were White; and of the 16 180 (65%) in the UC group, 9621 (60%) were female, 6559 (40%) were male, and 15468 (96%) were White. 21 153 (85%) participants reported one or more clinically actionable symptoms (defined as SPPADE score ≥4/10). In multivariate analyses, mean population joint SPPADE symptom burden favoured ECC periods (p=0·0055) with adjusted mean differences of –0·12 (95% CI –0·19 to –0·05) for anxiety, –0·08 (–0·15 to –0·01) for depression, –0·06 (–0·16 to 0·03) for fatigue, –0·04 (–0·14 to 0·07) for pain, 0·03 (–0·07 to 0·14) for physical function, and –0·07 (–0·16 to 0·02) for sleep. ECC benefit was also noted following actionable scores (p<0·0001) with adjusted mean differences of –0·10 (–0·17 to –0·03) for anxiety, –0·09 (–0·16 to –0·02) for depression, –0·09 (–0·18 to –0·01) for fatigue, 0·04 (–0·05 to 0·12) for pain, 0·07 (–0·03 to 0·17) for physical function, and –0·02 (–0·10 to 0·07) for sleep. Centralised EHR-facilitated, symptom surveillance and collaborative care management are more beneficial than symptom surveillance alone in reducing the population burden of SPPADE symptoms in oncology patients. US National Institutes of Health.

Background Evidence-based health promotion programs are commonly assessed within research environments, yet there is a critical need to understand how to implement interventions across multiple settings, prioritizing populations who are underserved and under-resourced. A possible approach involves leveraging established social networks to enhance health outcomes. Within these networks, influential individuals, known as health promoters (HPs), play a key role in disseminating health information. The Rochester Healthy Community Partnership created a social network–based intervention called Healthy Immigrant Community (HIC), utilizing HPs to encourage healthy eating and physical activity to address cardiovascular disease outcomes among Hispanic/Latino and Somali immigrant populations. We conducted three focus groups pre-, mid-, and post intervention (nine groups total; n  = 30) to understand HPs’ motivations for participating, implementation barriers and facilitators they faced, and suggestions for improvement. Methods Using the National Institute on Minority Health and Health Disparities Research Framework and Public Health Critical Race Praxis, we conducted a longitudinal trajectory analysis to explore themes and changes over time. Results Participants reported that their motivations to be a HP in Healthy Immigrant Community were personal goals, such as health improvement and weight loss, as well as collective community benefits and personal gains like knowledge and leadership skills. Barriers included logistical challenges, navigating health-related differences between one’s country of origin and the US, and structural issues such as racism, high costs (e.g., food), and absence of an affordable gym. Facilitators included strong community ties, peer-to-peer support, and culturally relevant approaches, with participants recommending additional resources, tailored programming, and reframing the program’s focus on overall health rather than weight loss. Conclusions Our study highlighted a shift in HPs’ motivations to participate in Healthy Immigrant Community from weight loss to holistic health promotion. The HPs’ reflections on their experience showcase the transformative impact of culturally tailored, equity-focused interventions while emphasizing the need to address systemic barriers and incorporate community feedback for sustainable change.

Background As part of a pragmatic cluster-randomized trial for patients with cancer, we recruited representatives from each care setting and trained them to be practice facilitators (“Symptom Sages”). This mixed methods study evaluated barriers and facilitators individuals encountered in this role. Methods Symptom Sages were invited to complete a brief web-based survey and semi-structured interview, developed using constructs from the Consolidated Framework for Implementation Research (CFIR) 2.0. Survey responses were summarized descriptively. Two researchers coded interview transcripts to CFIR 2.0 constructs, reviewed coded text, and created memos to identify themes. Final themes were agreed on via discussion. Results Between August and November 2023, 12 practice facilitators participated (11 completed surveys and 7 completed interviews). Interviews revealed the following themes: 1) training and knowledge acquisition for the facilitator role were sufficient but time was not, 2) mixed perceptions of the intervention and inability to modify the intervention impacted role motivation, and 3) there were challenges motivating colleagues and getting organizational support. Survey results revealed similar findings. Conclusion Training alone is insufficient for practice facilitators’ success in the absence of allocated protected time. Additional implementation strategies may be needed to support adoption in oncology settings. Trial registration This trial was registered at ClinicalTrials.gov, NCT03892967, on March 25, 2019, https://clinicaltrials.gov/study/NCT03892967 .

Purpose Little is known about the degree to which caregiver training as part of routine clinical care influences caregiver self-efficacy. The objective of this study was to examine the relationship between training during routine clinical cancer care and self-efficacy among caregivers of colorectal cancer patients. Methods Caregivers completed a self-administered questionnaire about their experiences with training for specific patient problems and about their task-specific and general caregiving self-efficacy. Associations between training and self-efficacy were examined for each problem using multivariate logistic regression adjusted for caregiver age, race, care burden, education, perception of patient’s health, and patient stage of disease. Results Four hundred seventeen caregivers completed the survey (70% response rate), of whom 374 (90%) were female and 284 (68%) were the patient’s spouse/partner. Overall, 77 (38%) reported inadequate training for pain, 80 (38%) for bowel, 121 (48%) for fatigue, 65 (26%) for medication administration, and 101 (40%) for other symptoms. The odds of having low self-efficacy were significantly higher among those with perceptions of inadequate training across the following cancer-related problems: pain 10.10 (3.36, 30.39), bowel 5.04 (1.98, 12.82), fatigue 8.45 (3.22, 22.15), managing medications 9.00 (3.30, 24.51), and other 3.87 (1.68, 8.93). Conclusions Caregivers commonly report inadequate training in routine colorectal cancer care. Significant and consistent associations between training adequacy and self-efficacy were found. This study supports the value of training caregivers in common cancer symptoms. Further work on how and when to provide caregiver training to best impact self-efficacy is needed.

Challenges to recruitment of family caregivers exist and are amplified when consent must occur in the context of chaotic healthcare circumstances, such as the transition from hospital to home. The onset of the COVID-19 pandemic during our randomized controlled trial provided an opportunity for a natural experiment exploring and examining different consent processes for caregiver recruitment. The purpose of this publication is to describe different recruitment processes (in-person versus virtual) and compare diversity in recruitment rates in the context of a care recipient’s hospitalization. We found rates of family caregiver recruitment for in-person versus virtual were 28% and 23%, respectively ( p  = 0.01). Differences existed across groups with family caregivers recruited virtually being more likely to be younger, white, have greater than high school education, and not be a spouse or significant other to the care recipient, such as a child. Future work is still needed to identify the modality and timing of family caregiver recruitment to maximize rates and enhance the representativeness of the population for equitable impact.

IntroductionAlzheimer’s disease and related dementias (ADRD) are conditions with progressive cognitive decline. Still, people living with late-stage ADRD (PLWD) have been reported to exhibit transient recovery of communication or behavioural abilities that had seemingly been lost. These lucid episodes (LEs) are underinvestigated and poorly understood. This study aims to advance scientific understanding of the incidence, prevalence and predictors of LEs and assess from family caregivers if LEs are associated with changes they make in care planning or experiences with burden, distress or grief.MethodsThis study recruited 545 caregivers from five ADRD-related registries in the USA. Eligibility included caregivers over 18 years who currently provide care to someone with moderate to very severe ADRD and can complete online questionnaires. Using a longitudinal observational study design, consented caregivers will be assessed monthly for 1 year using online questionnaires that inquire about witnessing LEs. If witnessed, the context and content of the LE is reported. Changes in caregiver decision-making about care for the PLWD, and caregiver burden, distress and grief are assessed at baseline, 6 and 12 months.AnalysisAnalysis of baseline data will assess descriptive aspects of LEs that are currently unknown (eg, prevalence, content, antecedents, duration). Longitudinal analysis will examine the incidence of LEs, characteristics of PLWD and caregivers that are predictors of episodes, and the associations between LEs and caregiver outcomes (eg, burden, distress, grief).Ethics and disseminationThis study is being conducted in accordance with all Federal Policies for the Protection of Human Subjects. The protocol has been approved by the Mayo Clinic Institutional Review Board (ID 22-006861). Findings will be presented at scientific conferences and disseminated through journal publications and outreach efforts with collaborating partners invested in brain health and caregiver support.