Exploring the Inclusion of Person-Centered Care Domains in Stroke Transitions of Care Interventions: A Scientific Statement From the American Heart Association.

BACKGROUND: Health care teams along the stroke recovery continuum have a responsibility to support care transitions and return to the community. Ideally, individualized care will consider patient and family preferences, best available evidence, and health care professional input. Person-centered care can improve patient-practitioner interactions through shared decision-making in which health professionals and institutions are sensitive to those for whom they provide care. However, it is unclear how the concepts of person-centered care have been described in reports of stroke transitional care interventions. METHODS: A secondary analysis of a systematic review and meta-analysis was undertaken. We retrieved all included articles (n=17) and evaluated the extent to which each intervention explicitly addressed 7 domains of person-centered care: alignment of care with patients' values, preferences, and needs; coordination of care; information and education; physical comfort; emotional support; family and friend involvement; and smooth transition and continuity of care. RESULTS: Most of the articles included some aspects of person-centeredness; we found that certain domains were not addressed in the descriptions of transitional care interventions, and no articles mentioned all 7 domains of person-centered care. We identified 3 implications for practice and research: (1) delineating person-centered care components when reporting interventions, (2) elucidating social and cultural factors relevant to the study sample and intervention, and (3) clearly describing the role of family and nonmedical support in the intervention. CONCLUSIONS: There is still room for greater consistency in the reporting of person-centeredness in stroke transitions of care interventions, despite a long-standing definition and conceptualization of person-centered care in academic and clinically focused literature.

Caring for Stroke Survivors: Ethnic Differences in Informal Caregiver Needs Among Mexican American and Non-Hispanic White Communities.

BACKGROUND: After stroke, Mexican American (MA) individuals have worse 90-day neurological, functional, cognitive, and quality of life outcomes and a higher prevalence of poststroke depression compared with non-Hispanic White (NHW) individuals. MA individuals receive more help through informal, unpaid caregiving than NHW individuals. We examined ethnic differences in needs identified by MA and NHW stroke caregivers. METHODS: Caregivers were identified from the population-based BASIC study (Brain Attack Surveillance in Corpus Christi) in Nueces County, Texas from October 2019 to November 2021. Responses to the Caregiver Needs and Concerns Checklist were collected at 90-day poststroke to assess caregiver needs. Using the cross-sectional sample, prevalence scores and bivariate analyses were used to examine ethnic differences between Caregiver Needs and Concerns Checklist items. Linear regression was used to examine adjusted associations of ethnicity with the total average needs for each domain. Models were adjusted for patient and caregiver age and sex, caregiver education level, and employment status, patient insurance status, prestroke function, cognitive status, language, and functional outcome at 90 days, intensity and duration of caregiving, presence of other caregivers (paid/unpaid), and cohabitation of patient and caregiver. RESULTS: A total of 287 were approached, and 186 stroke caregivers were included with a median age of 54.2 years and 80.1% being women caregivers: 74.3% MA and 25.7% NHW individuals. MA caregivers had significantly lower education (

Efficacy of BETTER transitional care intervention for diverse patients with traumatic brain injury and their families: Study protocol of a randomized controlled trial.

OBJECTIVE: The purpose of this study is to examine the efficacy of BETTER (Brain Injury, Education, Training, and Therapy to Enhance Recovery) vs. usual transitional care management among diverse adults with traumatic brain injury (TBI) discharged home from acute hospital care and families. METHODS: This will be a single-site, two-arm, randomized controlled trial (N = 436 people, 218 patient/family dyads, 109 dyads per arm) of BETTER, a culturally- and linguistically-tailored, patient- and family-centered, TBI transitional care intervention for adult patients with TBI and families. Skilled clinical interventionists will follow a manualized protocol to address patient/family needs. The interventionists will co-establish goals with participants; coordinate post-hospital care, services, and resources; and provide patient/family education and training on self- and family-management and coping skills for 16 weeks following hospital discharge. English- and Spanish-speaking adult patients with mild-to-severe TBI who are discharged directly home from the hospital without inpatient rehabilitation or transfer to other settings (community discharge) and associated family caregivers are eligible and will be randomized to treatment or usual transitional care management. We will use intention-to-treat analysis to determine if patients receiving BETTER have a higher quality of life (primary outcome, SF-36) at 16-weeks post-hospital discharge than those receiving usual transitional care management. We will conduct a descriptive, qualitative study with 45 dyads randomized to BETTER, using semi-structured interviews, to capture perspectives on barriers and facilitators to participation. Data will be analyzed using conventional content analysis. Finally, we will conduct a cost/budget impact analysis, evaluating differences in intervention costs and healthcare costs by arm. DISCUSSION: Findings will guide our team in designing a future, multi-site trial to disseminate and implement BETTER into clinical practice to enhance the standard of care for adults with TBI and families. The new knowledge generated will drive advancements in health equity among diverse adults with TBI and families. TRIAL REGISTRATION: NCT05929833.

ParallelED-A novel screening and referral intervention using emergency department wait times to identify and address unmet social needs.

Background: People arriving at the emergency department (ED) often have unmet health-related social needs (HRSN). We implemented an intervention that used undergraduate student volunteers to screen patients in the ED waiting room (WR) for unmet social drivers of health and subsequently referred patients to community resources. Methods: This cross-sectional quality improvement study included patients who were approached to complete a HRSN screening questionnaire, subsequently referred to community resources, and followed up by phone from October 2021 to October 2022 in an ED WR of an academic medical center. Primary measures were the proportions of patients who had unmet HRSN and the proportions enrolled in a statewide database of social care resources-NCCARE360. Patient demographics and geospatial distribution were also assessed to better understand the population served. Results: Our intervention reached 3297 unique patients, with 398 patients (12%) agreeing to complete screening. Of those screened, 93% were positive for at least one social need and 95% of the aforementioned were interested in receiving assistance. A total of 60% of those who screened positive were enrolled into NCCARE360. Persons identifying as female or non-Hispanic Black were disproportionately represented at a higher rate among those who screened positive for at least one social need, with food and housing insecurity emerging as the most common referral categories. Conclusion: Our results demonstrate patients' willingness to be screened in the ED WR and a high identification of HRSN. Our findings show that idle time in the ED WR can be used to identify patients with unmet HRSN and refer them to resources.

The BETTER Traumatic Brain Injury Transitional Care Intervention: A Feasibility Study.

This study aimed to investigate the feasibility, acceptability, and clinical outcome measures of BETTER (Brain Injury Education, Training, and Therapy to Enhance Recovery), a culturally tailored traumatic brain injury (TBI) transitional care intervention, among diverse younger adult patients with TBI (age 18-64) and their caregivers. Trained clinical interventionists addressed patient/family needs; established goals; coordinated post-hospital care and resources; and provided patient/family training on self- and family-management coping skills. Fifteen dyads enrolled (N = 31, 15 patients, 16 caregivers). All completed baseline data; 74.2% (n = 23; 10 patients, 13 caregivers) completed 8-week data; 83.8% (n = 26; 13 each) completed 16-week data. Approximately 38% (n = 12, 3 patients, 9 caregivers) completed acceptability data, showing positive experiences (mean = 9.25, range 0-10; SD = 2.01). Overall and mental quality of life (QOL) scores did not differ over time but physical QOL scores did improve over time (baseline: 30.3, 8 weeks: 46.5, 16 weeks: 61.6; p = 0.0056), which was considered to be a suitable outcome measure for a future trial. BETTER is a promising intervention with implications to improve TBI care standards. Research is needed to determine efficacy in a randomized trial.

"If you respect me, you are respecting my culture": methods and recommendations for personalizing a TBI transitional care intervention.

OBJECTIVE: Despite research, national legislation, and clinical guidelines supporting transitional care, there is minimal benefit from existing transitional care interventions for racial/ethnic minorities with traumatic brain injury (TBI) discharged home from acute hospital care. Existing TBI transitional care interventions are not tailored to address the needs/preferences of patients from various racial/ethnic minority groups. The purpose of this study was to describe use of personalization to tailor a TBI transitional care intervention for various racial/ethnic groups. DESIGN: Following preliminary intervention manual development, a qualitative descriptive study was conducted using eight focus groups with 40 English-and Spanish-speaking participants (12 patients, 12 caregivers, and 16 providers). RESULTS: Three personalization-related themes emerged: 1) what is important to me, 2) finding someone to deliver the intervention who can adapt to my needs, and 3) respect over culture. Findings informed personalization strategies within our final manual. CONCLUSIONS: We recommend researchers who wish to use personalization to tailor interventions to consider: 1) allowing stakeholders to dictate what is most important and 2) implementing an iterative intervention development process with input from diverse stakeholders. Findings have implications for informing the development of transitional care interventions to increase the likelihood that interventions are inclusive of needs and preferences of various races/ethnicities.

Training student volunteers as community resource navigators to address patients' social needs: A curriculum toolkit.

Introduction: Few resources are available to train students to provide patients assistance for obtaining needed community-based services. This toolkit outlines a curriculum to train student volunteers to become "community resource navigators" to serve patients via telephone at partner health sites. Methods: University students co-designed the Help Desk navigator program and training for volunteer navigators as part of an academic-community partnership with a local Federally Qualified Health Center (FQHC). The multi-modal curricula consisted of five components: didactic instruction on social determinants of health and program logistics, mock patient calls and documentation, observation of experienced navigator interaction with patients, supervised calls with real patients, and homework assignments. In 2020, training materials were adapted for virtual delivery due to the COVID-19 pandemic. Trainees completed a survey after completion to provide qualitative feedback on the training and preparedness. Results: The training was offered for the first cohort of 11 student volunteer navigators in 2019, revised and then offered for 13 undergraduate and nursing students over 6 weeks in 2020. In the training evaluation, trainees described the new knowledge and skills gained from the training, the long-term benefits toward their educational and professional career goals, and helpful interactive delivery of the training. Trainees also highlighted areas for improvement, including more time learning about community resources and practicing challenging patient conversations. Conclusions: Our peer-to-peer, multi-modal training prepares student volunteers to become community resource navigators. Student, eager for meaningful clinical experiences, are an untapped resource that can help patients with their social needs.

Developing the Next Generation of Leaders in Health Policy and Management: Lessons From an Undergraduate Student-Led Organization.

As health care continues to evolve, training the next generation of healthcare leaders is more important than ever. However, many university undergraduate students are not directly exposed to topics such as health policy and management within their coursework or co-curricular engagements. At Duke University, we developed the Student Collaborative on Health Policy (SCOHP) as an inter-disciplinary health policy hub that offers opportunities for learning, engagement, and leadership in the healthcare-related fields for students of all academic backgrounds. We see opportunity for similar student-led groups to be established by student leaders at other institutions, increasing interaction with experts, mentorship and the accessibility of experiential education, service, and leadership in the health care sector.

Sex and Racial/Ethnic Differences in Within-Stay Readmissions During Inpatient Rehabilitation Among Patients With Traumatic Brain Injury.

OBJECTIVE: The aim of the study was to determine the association of sex and race/ethnicity with acute hospital readmissions ("within-stay readmissions") during inpatient rehabilitation facility care versus patients discharged home without a within-stay readmission among traumatic brain injury patients. DESIGN: The study used a secondary analysis ( N = 210,440) of Uniform Data System for Medical Rehabilitation data using multiple logistic regression. RESULTS: Within-stay readmissions occurred for 11.79% of female and 11.77% of male traumatic brain injury patients. Sex-specific models identified insurance, comorbidities, and complications factored differently in likelihood of within-stay readmissions among female than male patients but association of all other factors were similar per group. Within-stay readmissions differences were more pronounced by race/ethnicity: White, 11.63%; Black, 11.32%; Hispanic/Latino, 9.78%; and other, 10.61%. Descriptive bivariate analysis identified racial/ethnic patients with within-stay readmissions had greater days from traumatic brain injury to inpatient rehabilitation facility admission (White, 17.66; Black, 21.70; Hispanic/Latino, 23.81; other, 20.66) and lower admission cognitive and motor function. Factors differed across models predicting within-stay readmissions for race/ethnic groups; age, admission motor and cognitive function, complications, and length of stay were consistent across groups. CONCLUSIONS: This study demonstrates disparities by race/ethnicity for inpatient rehabilitation facility within-stay readmissions among traumatic brain injury patients and factors predictive of this potentially preventable outcome by sex and race/ethnicity. Findings could inform care planning and quality improvement efforts for TBI patients.

Association of in-hospital depression and anxiety symptoms following stroke with 3 months- depression, anxiety and functional outcome.

BACKGROUND: Post-stroke depression and anxiety are common and are associated with worse post-stroke outcomes. Even though checking for depression during stroke hospitalization has become a common practice, the prognostic value of a positive in-hospital depression screen following stroke remains unclear. METHODS: This is a retrospective cohort study of patients with stroke or TIA discharged home from a tertiary care center. We examined the association between premorbid history of depression and in-hospital anxiety/depressive symptoms, with anxiety/depressive symptoms and functional outcome at 3-months post-stroke. Logistic regression models were generated using two different main predictors: 1) pre-hospital history of depression (N = 117) and 2) in-hospital depression/anxiety measured by the EQ-5D-3L (N = 66). RESULTS: In the cohort of 117 patients, the mean age was 66 years, with median NIHSS 2;44% were women and 70% White. A history of pre-stroke depression was reported by 7% (8/117). Anxiety/depression on ED-5D-3L was reported by 29/66 (43%) in the hospital and by 22/66 (33%) at three months' post-stroke. In the first adjusted model, previous history of depression was associated with 3 months EQ-5D-3L anxiety/depression (OR = 10.2;95%CI:1.12-90.9, p = 0.038). In the second adjusted model, in-hospital anxiety/depression was associated with 3-month EQ-5D-3L anxiety/depression (OR = 3.9; 95% CI:1.16-13.1, p = 0.027). In-hospital anxiety/depression was associated with a higher mRS at 3 months but not after adjusting for covariates. CONCLUSION: A previous history of depression and in-hospital anxiety/depression symptoms are associated with anxiety/depression symptoms 3-months post-stroke but not with functional outcome. Screening stroke patients for both during hospitalization is warranted because of the association with later symptoms.

Hospital Readmissions and Mortality Among Fee-for-Service Medicare Patients With Minor Stroke or Transient Ischemic Attack: Findings From the COMPASS Cluster-Randomized Pragmatic Trial.

Background Mortality and hospital readmission rates may reflect the quality of acute and postacute stroke care. Our aim was to investigate if, compared with usual care (UC), the COMPASS-TC (Comprehensive Post-Acute Stroke Services Transitional Care) intervention (INV) resulted in lower all-cause and stroke-specific readmissions and mortality among patients with minor stroke and transient ischemic attack discharged from 40 diverse North Carolina hospitals from 2016 to 2018. Methods and Results Using Medicare fee-for-service claims linked with COMPASS cluster-randomized trial data, we performed intention-to-treat analyses for 30-day, 90-day, and 1-year unplanned all-cause and stroke-specific readmissions and all-cause mortality between INV and UC groups, with 90-day unplanned all-cause readmissions as the primary outcome. Effect estimates were determined via mixed logistic or Cox proportional hazards regression models adjusted for age, sex, race, stroke severity, stroke diagnosis, and documented history of stroke. The final analysis cohort included 1069 INV and 1193 UC patients (median age 74 years, 80% White, 52% women, 40% with transient ischemic attack) with median length of hospital stay of 2 days. The risk of unplanned all-cause readmission was similar between INV versus UC at 30 (9.9% versus 8.7%) and 90 days (19.9% versus 18.9%), respectively. No significant differences between randomization groups were seen in 1-year all-cause readmissions, stroke-specific readmissions, or mortality. Conclusions In this pragmatic trial of patients with complex minor stroke/transient ischemic attack, there was no difference in the risk of readmission or mortality with COMPASS-TC relative to UC. Our study could not conclusively determine the reason for the lack of effectiveness of the INV. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT02588664.

Clinical Performance Measures for Stroke Rehabilitation: Performance Measures From the American Heart Association/American Stroke Association.

The American Heart Association/American Stroke Association released the adult stroke rehabilitation and recovery guidelines in 2016. A working group of stroke rehabilitation experts reviewed these guidelines and identified a subset of recommendations that were deemed suitable for creating performance measures. These 13 performance measures are reported here and contain inclusion and exclusion criteria to allow calculation of rates of compliance in a variety of settings ranging from acute hospital care to postacute care and care in the home and outpatient setting.

Implementation of Complex Interventions: Lessons Learned From the Patient-Centered Outcomes Research Institute Transitional Care Portfolio.

BACKGROUND: Despite the well-documented risks to patient safety associated with transitions from one care setting to another, health care organizations struggle to identify which interventions to implement. Multiple strategies are often needed, and studying the effectiveness of these complex interventions is challenging. OBJECTIVE: The objective of this study was to present lessons learned in implementing and evaluating complex transitional care interventions in routine clinical care. RESEARCH DESIGN: Nine transitional care study teams share important common lessons in designing complex interventions with stakeholder engagement, implementation, and evaluation under pragmatic conditions (ie, using only existing resources), and disseminating findings in outlets that reach policy makers and the people who could ultimately benefit from the research. RESULTS: Lessons learned serve as a guide for future studies in 3 areas: (1) Delineating the function (intended purpose) versus form (prespecified modes of delivery of the intervention); (2) Evaluating both the processes supporting implementation and the impact of adaptations; and (3) Engaging stakeholders in the design and delivery of the intervention and dissemination of study results. CONCLUSION: These lessons can help guide future pragmatic studies of care transitions.

Factors Associated with Patients' Connection to Referred Social Needs Resources at a Federally Qualified Health Center.

INTRODUCTION: In an effort to improve health outcomes and promote health equity, healthcare systems have increasingly begun to screen patients for unmet social needs and refer them to relevant social services and community-based organizations. This study aimed to identify factors associated with the successful connection (ie, services started) to social needs resources, as well as factors associated with an attempt to connect as a secondary, intermediate outcome. METHODS: This retrospective cohort study included patients who had been screened, referred, and subsequently reached for follow-up navigation from March 2019 to December 2020, as part of a social needs intervention at a federally qualified health center (FQHC). Measures included demographic and social needs covariates collected during screening, as well as resource-related covariates that characterized the referred resources, including service domain (area of need addressed), service site (integration relative to the FQHC), and access modality (means of accessing services). RESULTS: Of the 501 patients in the analytic sample, 32.7% had started services with 1 or more of their referred resources within 4 weeks of the initial referral, and 63.3% had at least attempted to contact 1 referred resource, whether or not they were able to start services. Receiving a referral to resources that patients could access via phone call or drop-in visit, as opposed to resources that required additional appointments or applications prior to accessing services, was associated with increased odds (aOR 1.95, 95% CI 1.05, 3.61) of connection success, after adjusting for age, sex, race, ethnicity, education, number of social needs, and resource-related characteristics. This study did not find statistically significant associations between connection attempt and any variable included in adjusted analyses. CONCLUSION: These findings suggest that referral pathways may influence the success of patients' connection to social needs resources, highlighting opportunities for more accessible solutions to addressing patients' unmet social needs.

Workforce Models to Screen for and Address Patients' Unmet Social Needs in the Clinic Setting: A Scoping Review.

OBJECTIVES: While healthcare organizations increasingly aim to address the social determinants of health (SDOH) in the clinic setting, there is little guidance on which staff are best equipped to assume this role. The present study is a scoping review of the peer-reviewed literature to characterize workforce models used to screen for and respond to patients' unmet social needs in ambulatory settings. METHODS: Four online databases were used to identify papers published until February 2021. Eligible articles were original research studies or systematic reviews that described the implementation of a standardized assessment for multiple SDOH domains and resulting activities to respond to individual patient needs (eg, referral to community resources) in ambulatory care settings. RESULTS: Of the 1569 articles identified, 65 met study eligibility criteria. Majority of studies had observational study designs (11% were randomized control trials). For screening-related activities, more articles reported using traditional healthcare staff (51%), such as medical providers, medical assistants, and front-desk staff, than social care staff (32%), such as social workers and student volunteers. In contrast, for response-related activities, more articles reported using social care staff (88%) than traditional healthcare staff (60%). While we found wide variations in specific team configurations and training for the roles, social care staff generally provided more intensive forms of assistance than traditional healthcare staff. CONCLUSION: While this review demonstrates the breadth of models for building or deploying a workforce to integrate health and social care, it also identifies the need for rigorous research on workforce development, implementation, and effectiveness.

Socio-ecological perspective on factors influencing acute recovery of younger stroke survivors: A mixed methods study.

AIMS: Stroke is affecting an increasing number of young and middle-aged adults. Given the substantial diversion from anticipated life trajectories that younger stroke survivors experience as a result of their stroke deficits, their health-related quality of life (HRQOL) is likely to be negatively impacted during the immediate post-acute recovery period. The aim of this study was to generate a comprehensive understanding of the influences on HRQOL and acute recovery during the first three months following stroke for younger adults using a socio-ecological perspective. DESIGN: Longitudinal, convergent mixed methods design. METHODS: HRQOL survey data, assessed using the Patient Generated Index (N = 31), and qualitative interview data about survivors' recovery experiences (N = 20) were collected. Simple linear regression and effect size results were integrated with themes and sub-themes identified from conventional content analysis using joint data displays. RESULTS: Depression and fatigue negatively affected recovery at the individual level. At the family and societal level, family functioning, social support including being married, having insurance, working, adequate income and being unemployed post-stroke all positively impacted recovery. Qualitative findings revealed determination, coping, and accessing healthcare to positively affect recovery though a meta-inference could not be drawn as no quantitative data addressed these concepts. CONCLUSION: A variety of factors intersecting across socio-ecological levels were perceived by young stroke survivors to influence acute recovery experiences and outcomes. IMPACT: This study identified individual-, family- and societal-level factors in younger adults' environments that may affect the acute stroke recovery experience. Findings underscore the need for research and clinical approaches that consider environmental factors at multiple levels of influence when supporting stroke recovery for younger adults.

Association of formal and informal care with health-related quality of life and depressive symptoms: findings from the Caring for Adults Recovering from the Effects of Stroke study.

AIM: To investigate the association between informal and formal care and stroke participants' self-reported health-related quality of life and depressive symptoms one year after the stroke event. METHODS: We examined a national population-based sample of 123 stroke participants. Care received was defined as formal (outpatient therapy, care from home health aides, nurses, or therapists), informal (family caregiver), or shared (formal and informal). Hours of care were extracted from Medicare claims and caregiver self-report. A general linear model was used to compare health-related quality of life and depressive symptoms one year after the stroke for those who received shared care, only informal care or only formal care to those with no post-stroke care. RESULTS: Among stroke participants, 12.2% received only formal care, 35.0% only informal care, 38.2% shared care, and 14.6% no care. Those with only informal care had greater self-reported depressive symptoms than those who received no care at all. CONCLUSIONS: Shared care was the most common care configuration for stroke participants, but no significant associations were found between shared care and self-reported outcomes after adjusting for stroke participant characteristics. Further research is needed on the dose of informal and formal care and their coordination to better understand relationships with recovery.IMPLICATIONS FOR REHABILITATIONStroke is one of the leading causes of disability for adults in the USA and ongoing care is needed for survivors.Informal caregivers such as family members play an important role in recovery in addition to formal care provided by home health aides, nurses and therapists.This study showed that survivors with informal care had more severe depressive symptoms, while shared care provided by formal and informal caregivers may prevent further decline in patients with worse baseline health.

Experiences of Family Caregivers After an Acute Neurological Event.

BACKGROUND: Family of patients hospitalized in an intensive care unit (ICU) often immediately assume the role of caregiver to an individual with significant health care needs. The transition into this caregiver role may be sudden and unexpected; their experiences are not well understood. The purpose of this qualitative study was to explore experiences of family caregivers in the neurocritical care unit in order to identify areas for enhancing patient- and family-centered care. METHODS: This single-center ethnographic study explored the use of systems theory to investigate the perceptions, experiences, and attitudes of family/caregivers regarding their relationships and interactions between the patient, other family, members of the healthcare provider team, and health system after an acute neurological event in Argentina. Field notes from 9 weeks of direct observation together with transcripts from nine semi-structured interviews (transcribed verbatim and translated from Spanish to English) were analyzed using a grounded theory approach. RESULTS: Nine themes emerged based on iterative thematic analysis, including: adjusting to a changed life, managing emotions, changing role, relying on faith, redefining recovery, participating in patient care, depending on clinical experts, el tratohumano, and finding unity in purpose. In the neurocritical care environment, an important intermediary role exists for family/caregivers and the patient, other family, and healthcare providers. CONCLUSIONS: The results demonstrate the potential for family, providers, and the health system to influence family/caregivers' experience with neurocritical care. Involving families as part of the care team could have implications for patient- and family-centered care.