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Caregivers often experience strain and negative effects on their well-being. We tested the effects of a caregiver assessment and tailored care plan for caregivers of patients transitioning home from an inpatient rehabilitation facility (IRF), a study involving two groups: usual care ( n = 225) (preimplementation) and intervention (postimplementation) ( n = 215). Caregivers in the intervention group were assessed using the 25-item self-reported Preparedness Assessment for the Transition Home during the IRF stay. A tailored care plan was implemented in response to the assessment. Caregivers in both groups completed the Modified Caregiver Strain Index and Global Health Scale at 30- and 90-day postdischarge. After adjusting for baseline and demographics, caregivers in the intervention group reported lower strain ( p < .01) and better overall health ( p < .05) at 30-day post-IRF discharge, relative to usual care. Implementing a systematic caregiver assessment and tailored care plan in the IRF may mitigate the adverse effects of caregiving.

Facilitating successful care transitions across settings is a key nursing competency. Although we have achieved improvements in acute stroke care, similar advances in stroke care transitions in the postacute and return to community phases have lagged far behind. In the current delivery system, care transitions are often ineffective and inefficient resulting in unmet needs and high rates of unnecessary complications and avoidable hospital readmissions. Nurses must use evidence-based approaches to prepare stroke survivors and their family caregivers for postdischarge self-management, rehabilitation, and recovery. The purpose of this article is to provide evidence on the important nursing roles in stroke care and transition management across the care continuum, discuss cross-setting issues in stroke care, and provide recommendations to leverage nursing’s impact in optimizing outcomes for stroke survivors and their family unit across the continuum. To optimize nursing’s influence in facilitating safe, effective, and efficient care transitions for stroke survivors and their family caregivers across the continuum we have the following recommendations (1) establish a system of coordinated and seamless comprehensive stroke care across the continuum and into the community; (2) implement a stroke nurse liaison role that provides consultant case management for the episode of care across all settings/services for improved consistency, communication and follow-up care; (3) implement a validated caregiver assessment tool to systematically assess gaps in caregiver preparedness and develop a tailored caregiver/family care plan that can be implemented to improve caregiver preparedness; (4) use evidence-based teaching and communication methods to optimize stroke survivor/caregiver learning; and (5) use technology to advance stroke nursing care. Nurses must leverage their substantial influence over the health care delivery system to achieve these improvements in stroke care delivery to improve the health and lives of stroke survivors and their families.

Objectives: The global COVID-19 pandemic made strict visitation policies necessary. We explored the experiences of family members of patients with severe acute brain injury focusing on the impact of family presence in the hospital. Methods: Semistructured interviews (February 2018-April 2020) were audiotaped, transcribed, and analyzed using thematic analysis. Results: We interviewed family members of 19 patients with stroke, traumatic brain injury, or cardiac arrest; five interviews occurred after initiation of restrictive visitation policies. Four key themes highlight the role of visitation on family's ability to (1) cope by being at the bedside, (2) protect and advocate for the patient, (3) build trust with clinicians, and (4) receive emotional support in the intensive care unit. After visitation restrictions, families found ways to communicate and support virtually and wished for proactive communication from clinicians. Conclusions: Family presence at patient's bedside fulfills important needs. Visitation restrictions require hospitals to be creative and inclusive to help maintain these connections.

Worldwide, stroke is prevalent, costly, and disabling in >80 million survivors. The burden of stroke is increasing despite incredible progress and advancements in evidence-based acute care therapies and despite the substantial changes being made in acute care stroke systems, processes, and quality metrics. Although there has been increased global emphasis on the importance of postacute stroke care, stroke system changes have not expanded to include postacute care and outcome follow-up. Our objectives are to describe the gaps and challenges in postacute stroke care and suboptimal stroke outcomes; to report on stroke survivors’ and caregivers’ perceptions of current postacute stroke care and their call for improvements in follow-up services for recovery and secondary prevention; and, ultimately, to make the case that a paradigm shift is needed in the definition of comprehensive stroke care and the designation of Comprehensive Stroke Center. Three recommendations are made for a paradigm shift in comprehensive stroke care: (1) criteria should be established for designation of rehabilitation readiness for Comprehensive Stroke Centers, (2) The American Heart Association/American Stroke Association implement an expanded Get With The Guidelines–Stroke program and criteria for comprehensive stroke centers to be inclusive of rehabilitation readiness and measure outcomes at 90 days, and (3) a public health campaign should be launched to offer hopeful and actionable messaging for secondary prevention and recovery of function and health. Now is the time to honor the patients’ and caregivers’ strongest ask: better access and improved secondary prevention, stroke rehabilitation, and personalized care.

BACKGROUND: Hospital-based acute care (emergency department [ED] visits and hospitalizations) that is preventable with high-quality outpatient care contributes to healthcare system waste and patient harm. OBJECTIVE: To test the hypothesis that an ED-to-home transitional care intervention reduces hospital-based acute care in chronically ill, older ED visitors. RESEARCH DESIGN: Convergent, parallel, mixed-methods design including a randomized controlled trial SETTING: Two diverse Florida EDs. SUBJECTS: Medicare fee for service beneficiaries with chronic illness presenting to the ED. INTERVENTION: The Coleman Care Transition Intervention® adapted for ED visitors MEASURES: The main outcome was hospital-based acute care within 60 days of index ED visit. We also assessed office-based outpatient visits during the same period. RESULTS: The Intervention did not significantly reduce return ED visits or hospitalizations or increase outpatient visits. In those with return ED visits, the Intervention Group was less likely to be hospitalized than the Usual Care Group. Interview themes describe a cycle of hospital-based acute care largely outside patients’ control that may be difficult to interrupt with a coaching intervention. CONCLUSIONS AND RELEVANCE: Structural features of the healthcare system, including lack of access to timely outpatient care, funnel patients into the ED and hospital admission. Reducing hospital-based acute care requires increased focus on the healthcare system rather than patients’ care-seeking decisions. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02079987

Background The objectives of this study were to develop and test in real-world clinical practice the effectiveness of a comprehensive postacute stroke transitional care (TC) management program. Methods and Results The COMPASS study (Comprehensive Post-Acute Stroke Services) was a pragmatic cluster-randomized trial where the hospital was the unit of randomization. The intervention (COMPASS-TC) was initiated at 20 hospitals, and 20 hospitals provided their usual care. Hospital staff enrolled 6024 adult stroke and transient ischemic attack patients discharged home between 2016 and 2018. COMPASS-TC was patient-centered and assessed social and functional determinates of health to inform individualized care plans. Ninety-day outcomes were evaluated by blinded telephone interviewers. The primary outcome was functional status (Stroke Impact Scale-16); secondary outcomes were mortality, disability, medication adherence, depression, cognition, self-rated health, fatigue, care satisfaction, home blood pressure monitoring, and falls. The primary analysis was intention to treat. Of intervention hospitals, 58% had uninterrupted intervention delivery. Thirty-five percent of patients at intervention hospitals attended a COMPASS clinic visit. The primary outcome was measured for 59% of patients and was not significantly influenced by the intervention. Mean Stroke Impact Scale-16 (±SD) was 80.6±21.1 in TC versus 79.9±21.4 in usual care. Home blood pressure monitoring was self-reported by 72% of intervention patients versus 64% of usual care patients (adjusted odds ratio, 1.43 [95% CI, 1.21–1.70]). No other secondary outcomes differed. Conclusions Although designed according to the best available evidence with input from various stakeholders and consistent with Centers for Medicare and Medicaid Services TC policies, the COMPASS model of TC was not consistently incorporated into real-world health care. We found no significant effect of the intervention on functional status at 90 days post-discharge. Registration URL: https://www.clinicaltrials.gov ; Unique identifier: NCT02588664.

Background The COMprehensive Post-Acute Stroke Services (COMPASS) pragmatic trial compared the effectiveness of comprehensive transitional care (COMPASS-TC) versus usual care among stroke and transient ischemic attack (TIA) patients discharged home from North Carolina hospitals. We evaluated implementation of COMPASS-TC in 20 hospitals randomized to the intervention using the RE-AIM framework. Methods We evaluated hospital-level Adoption of COMPASS-TC; patient Reach (meeting transitional care management requirements of timely telephone and face-to-face follow-up); Implementation using hospital quality measures (concurrent enrollment, two-day telephone follow-up, 14-day clinic visit scheduling); and hospital-level sustainability (Maintenance). Effectiveness compared 90-day physical function (Stroke Impact Scale-16), between patients receiving COMPASS-TC versus not. Associations between hospital and patient characteristics with Implementation and Reach measures were estimated with mixed logistic regression models. Results Adoption: Of 95 eligible hospitals, 41 (43%) participated in the trial. Of the 20 hospitals randomized to the intervention, 19 (95%) initiated COMPASS-TC. Reach: A total of 24% (656/2751) of patients enrolled received a billable TC intervention, ranging from 6 to 66% across hospitals. Implementation: Of eligible patients enrolled, 75.9% received two-day calls (or two attempts) and 77.5% were scheduled/offered clinic visits. Most completed visits (78% of 975) occurred within 14 days. Effectiveness: Physical function was better among patients who attended a 14-day visit versus those who did not (adjusted mean difference: 3.84, 95% CI 1.42–6.27, p = 0.002). Maintenance: Of the 19 adopting hospitals, 14 (74%) sustained COMPASS-TC. Conclusions COMPASS-TC implementation varied widely. The greatest challenge was reaching patients because of system difficulties maintaining consistent delivery of follow-up visits and patient preferences to pursue alternate post-acute care. Receiving COMPASS-TC was associated with better functional status. Trial registration ClinicalTrials.gov number: NCT02588664. Registered 28 October 2015.

IMPORTANCE: The travel required to receive deep brain stimulation (DBS) programming causes substantial burden on patients and limits who can access DBS therapy. OBJECTIVE: To evaluate the efficacy of home health DBS postoperative management in an effort to reduce travel burden and improve access. DESIGN, SETTINGS, AND PARTICIPANTS: This open-label randomized clinical trial was conducted at University of Florida Health from November 2017 to April 2020. Eligible participants had a diagnosis of Parkinson disease (PD) and were scheduled to receive DBS independently of the study. Consenting participants were randomized 1:1 to receive either standard of care or home health postoperative DBS management for 6 months after surgery. Primary caregivers, usually spouses, were also enrolled to assess caregiver strain. INTERVENTIONS: The home health postoperative management was conducted by a home health nurse who chose DBS settings with the aid of the iPad-based Mobile Application for PD DBS system. Prior to the study, the home health nurse had no experience providing DBS care. MAIN OUTCOMES AND MEASURES: The primary outcome was the number of times each patient traveled to the movement disorders clinic during the study period. Secondary outcomes included changes from baseline on the Unified Parkinson’s Disease Rating Scale part III. RESULTS: Approximately 75 patients per year were scheduled for DBS. Of the patients who met inclusion criteria over the entire study duration, 45 either declined or were excluded for various reasons. Of the 44 patients enrolled, 19 of 21 randomized patients receiving the standard of care (mean [SD] age, 64.1 [10.0] years; 11 men) and 23 of 23 randomized patients receiving home health who underwent a minimum of 1 postoperative management visit (mean [SD] age, 65.0 [10.9] years; 13 men) were included in analysis. The primary outcome revealed that patients randomized to home health had significantly fewer clinic visits than the patients in the standard of care arm (mean [SD], 0.4 [0.8] visits vs 4.8 [0.4] visits; P

Background: The Comprehensive Post-Acute Stroke Services (COMPASS) Study is one of the first large pragmatic randomized-controlled clinical trials using comparative effectiveness research methods, funded by the Patient-Centered Outcomes Research Institute. In the COMPASS Study, we compare the effectiveness of a patient-centered, transitional care intervention versus usual care for stroke patients discharged home from acute care. Outcomes include stroke patient post-discharge functional status and caregiver strain 90 days after discharge, and hospital readmissions. A central tenet of Patient-Centered Outcomes Research Institute-funded research is stakeholder engagement throughout the research process. However, evidence on how to successfully implement a pragmatic trial that changes systems of care in combination with robust stakeholder engagement is limited. This combination is not without challenges. Methods: We present our approach for broad-based stakeholder engagement in the context of a pragmatic trial with the participation of patients, caregivers, community stakeholders, including the North Carolina Stroke Care Collaborative hospital network, and policy makers. To maximize stakeholder engagement throughout the COMPASS Study, we employed a conceptual model with the following components: (1) Patient and Other Stakeholder Identification and Selection; (2) Patient and Other Stakeholder Involvement Across the Spectrum of Research Activities; (3) Dedicated Resources for Patient and Other Stakeholder Involvement; (4) Support for Patient and Other Stakeholder Engagement Through Organizational Processes; (5) Communication with Patients and Other Stakeholders; (6) Transparent Involvement Processes; (7) Tracking of Engagement; and (8) Evaluation of Engagement. Conclusion: In this paper, we describe how each component of the model is being implemented and how this approach addresses existing gaps in the literature on strategies for engaging stakeholders in meaningful and useful ways when conducting pragmatic trials.

Family members are often poorly prepared to assume the caregiving role post-stroke leaving them feeling overwhelmed, frustrated, and abandoned by the healthcare system leading to physical, mental, and emotional strain. To address this, we developed and tested the Preparedness Assessment for the Transition Home after stroke (PATH-s) instrument based on a theoretical framework for improving stroke caregiver readiness. Consecutive studies were conducted over the past 10 years to 1) develop the caregiver readiness theoretical model identifying gaps in caregiver preparation in 80 interviews with caregivers and stroke survivors as they transitioned home from inpatient rehabilitation care; 2) develop and validate the PATH-s instrument with 183 caregiver-stroke survivor dyads, and 3) develop and implement a corresponding catalogue of interventions developed in consultation with 5 expert rehabilitation nurse case managers to improve stroke caregiver readiness. The Improving Caregiver Readiness Model has 2 preparedness domains; commitment and capacity and six sub-domains. In a factor analysis each domain/sub-domain subscale in the PATH-s demonstrated satisfactory internal consistency (a=0.69-0.86). The overall mean score was 3.11 (range 1.68 to 4.00) with high internal consistency reliability (a=0.90). The PATH-s is highly correlated with the Preparedness for Caregiving Scale. The stroke survivor’s total FIM score at discharge had a small but significant correlation with the PATH-s. Case managers find the PATH-s results and corresponding interventions helpful in tailoring transitional care plans. Caregivers worldwide describe the negative impacts of providing stroke care post-discharge. The Path to Stroke Caregiver Readiness Program shows promise for improving stroke caregiver preparation for discharge home.

Family caregivers of older adults report lack of preparation for their role, particularly upon acute hospital discharge following a medical event. Addressing the needs of family caregivers in the acute care setting prior to hospital discharge requires the identification of the caregiver, an assessment of caregiver preparedness, and a plan of care to address gaps in preparedness. The Preparedness Assessment for the Transition Home 7-item (PATH-7) is a valid and reliable instrument developed to assess family caregivers readiness for the caregiving role during acute care. The PATH-7 paper-pencil self-administered assessment was implemented in clinical care in medical-surgical nursing units in 2 acute care hospitals. Interventions to address gaps in preparedness were selected from a catalogue of interventions to develop a caregiver plan of care. The most frequent challenge identified by family caregivers was fulfilling the caregiving role on top of their other roles and responsibilities. This illustrated the need to assist family caregivers with exploring options for recruiting others to help with their roles and responsibilities and identify solutions soliciting and organizing help. This novel program promotes addressing the needs of the family unit, moving to a family-integrated are delivery model. Implementation challenges included in-person contact with caregiver to administer assessment, resources to respond to identified gaps in readiness, and lack of technology-enabled assessment administration. Positive staff experience with identifying and addressing needs of caregivers was a facilitator of staff engagement. Identifying, assessing, and addressing the needs of family caregivers of older adults is feasible in the acute care setting.

Introduction: COMPASS-CP is a patient-centered electronic application that includes real-time, patient-reported measures of functional and social determinants of health (PROMs). Algorithms assess PROMS and immediately generate actionable, individualized care plans. Algorithms may also trigger a caregiver assessment. COMPASS-CP identifies relevant local community resources tailored to the needs identified on the care plan. COMPASS-CP is administered by a nurse during a 7 to 14 day post-stroke transitional care clinic visit which meets CMS requirements for transitional care management codes. COMPASS-CP is being evaluated in a PCORI-funded pragmatic trial of COMprehensive Post-Acute Stroke Services (COMPASS). Scalability and sustainability of COMPASS-CP will require high user satisfaction. The purpose of this study was to evaluate clinician/user satisfaction with the COMPASS-CP application. Methods: We surveyed 56 clinicians (nurses, NPs or PAs) from 20 hospitals utilizing COMPASS-CP to assess satisfaction with the application in (1) efficiency in care plan development, (2) identifying factors impacting patient self-management and caregiver needs, (3) patient/provider communication, (4) patient/caregiver engagement, and (5) patient satisfaction with care. Clinicians rated their satisfaction on a 5-point Likert scale as either Strongly Agree , Agree , Neither Agree Nor Disagree , Disagree , Strongly Disagree . Results: Forty-four clinicians (79%) from 19 hospitals (95%) responded. Thirty-nine responders (89%) had used COMPASS-CP for 3 months or more. Conclusions: Successful implementation of electronic applications requires high levels of clinician/user satisfaction. The majority (66 %) of users agreed that they were satisfied with the COMPASS-CP application and 58% reported it made their job easier. Future analyses will determine if individualized care plans improve patient satisfaction and outcomes.

Comprehensive Post-Acute Care Stroke Services (COMPASS) is an ongoing pragmatic cluster-randomized controlled trial comparing the effectiveness of a post-acute, transitional care intervention with usual care for stroke patients discharged from hospitals across North Carolina. The innovative intervention combines services from post-acute care coordinators and advanced practice providers with linkages to community-based services to enhance continuity and coordination of stroke post-acute care. The COMPASS intervention is unique in its focus on addressing post-discharge needs of both patients and family caregivers. Assessments of the patient’s functional and social status and related post-acute care needs, and the caregiver’s capacity for assisting the patient provide the basis for an individualized electronic care plan addressing specific needs; linking patients and caregivers to relevant community-based services (e.g. caregiver support, medication management) and follow-up care. Examples of the COMPASS assessments, and methods for real-time electronic care plan generation and immediate links to community resources will be discussed.

Introduction: Older, chronically ill patients with limited health literacy are often under-engagedin managing their health and turn to the emergency department (ED) for healthcare needs. Wetested the impact of an ED-initiated coaching intervention on patient engagement and follow-updoctor visits in this high-risk population. We also explored patients’ care-seeking decisions. Methods: We conducted a mixed-methods study including a randomized controlled trial andin-depth interviews in two EDs in northern Florida. Participants were chronically ill older EDpatients with limited health literacy and Medicare as a payer source. Patients were assignedto an evidence-based coaching intervention (n= 35) or usual post-ED care (n= 34). Qualitativeinterviews (n=9) explored patients’ reasons for ED use. We assessed average between-groupdifferences in patient engagement over time with the Patient Activation Measure (PAM) tool,using logistic regression and a difference-in-difference approach. Between-group differences infollow-up doctor visits were determined. We analyzed qualitative data using open coding andthematic analysis. Results: PAM scores fell in both groups after the ED visit but fell signi ficantly more in “usualcare” (average decline -4.64) than “intervention” participants (average decline -2.77) (β=1.87,p=0.043). There were no between-group differences in doctor visits. Patients described wellinformedreasons for ED visits including onset and severity of symptoms, lack of timely provideraccess, and immediate and comprehensive ED care. Conclusion: The coaching intervention significantly reduced declines in pati ent engagementobserved after usual post-ED care. Patients reported well-informed reasons for ED use andwill likely continue to make ED visits unless strategies, such as ED-initiated coaching, areimplemented to help vulnerable patients better manage their health and healthcare.

Background and Purpose— Rehabilitation is recommended after a stroke to enhance recovery and improve outcomes, but hospital’s use of inpatient rehabilitation facilities (IRFs) or skilled nursing facility (SNF) and the factors associated with referral are unknown. Methods— We analyzed clinical registry and claims data for 31 775 Medicare beneficiaries presenting with acute ischemic stroke from 918 Get With The Guidelines-Stroke hospitals who were discharged to either IRF or SNF between 2006 and 2008. Using a multilevel logistic regression model, we evaluated patient and hospital characteristics, as well as geographic availability, in relation to discharge to either IRF or SNF. After accounting for observed factors, the median odds ratio was reported to quantify hospital-level variation in the use of IRF versus SNF. Results— Of 31 775 patients, 17 662 (55.6%) were discharged to IRF and 14 113 (44.4%) were discharged to SNF. Compared with SNF patients, IRF patients were younger, more were men, had less health-service use 6 months prestroke, and had fewer comorbid conditions and in-hospital complications. Use of IRF or SNF varied significantly across hospitals (median IRF use, 55.8%; interquartile range, 34.8%–75.0%; unadjusted median odds ratio, 2.59; 95% confidence interval, 2.44–2.77). Hospital-level variation in discharge rates to IRF or SNF persisted after adjustment for patient, clinical, and geographic variables (adjusted median odds ratio, 2.87; 95% confidence interval, 2.68–3.11). Conclusions— There is marked unexplained variation among hospitals in their use of IRF versus SNF poststroke even after accounting for clinical characteristics and geographic availability. Clinical Trial Registration— URL: https://clinicaltrials.gov . Unique identifier: NCT02284165.

Background and Purpose— The purpose of this statement is to delineate basic expectations regarding primary palliative care competencies and skills to be considered, learned, and practiced by providers and healthcare services across hospitals and community settings when caring for patients and families with stroke. Methods— Members of the writing group were appointed by the American Heart Association Stroke Council’s Scientific Statement Oversight Committee and the American Heart Association’s Manuscript Oversight Committee. Members were chosen to reflect the diversity and expertise of professional roles in delivering optimal palliative care. Writing group members were assigned topics relevant to their areas of expertise, reviewed the appropriate literature, and drafted manuscript content and recommendations in accordance with the American Heart Association’s framework for defining classes and level of evidence and recommendations. Results— The palliative care needs of patients with serious or life-threatening stroke and their families are enormous: complex decision making, aligning treatment with goals, and symptom control. Primary palliative care should be available to all patients with serious or life-threatening stroke and their families throughout the entire course of illness. To optimally deliver primary palliative care, stroke systems of care and provider teams should (1) promote and practice patient- and family-centered care; (2) effectively estimate prognosis; (3) develop appropriate goals of care; (4) be familiar with the evidence for common stroke decisions with end-of-life implications; (5) assess and effectively manage emerging stroke symptoms; (6) possess experience with palliative treatments at the end of life; (7) assist with care coordination, including referral to a palliative care specialist or hospice if necessary; (8) provide the patient and family the opportunity for personal growth and make bereavement resources available if death is anticipated; and (9) actively participate in continuous quality improvement and research. Conclusions— Addressing the palliative care needs of patients and families throughout the course of illness can complement existing practices and improve the quality of life of stroke patients, their families, and their care providers. There is an urgent need for further research in this area.

Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.

Care transitions across settings (hospital, other institutional settings, and home) are vulnerable exchange points for patients and family caregivers that contribute to higher risk of poor health outcomes.1 The Institute of Medicine and National Quality Forum identified improving transitions across the continuum from acute care to home as a national priority.2,3 Despite this, care transitions for individuals with disabling conditions, such as stroke, remain inefficient, resulting in unmet patient and caregiver needs, increased safety risks, high rates of preventable readmissions, and increased healthcare costs.4 Nurses have an integral role in care coordination activities at various practice levels and settings, thus nurses can help transform healthcare delivery for stroke survivors through improving transitions. Stroke is the leading cause of major disability. Annually, ≈800 000 people are hospitalized for stroke in the United States. In 2010, there were ≈6.6 million stroke survivors with a predicted increase in prevalence of >20% over the next 20 years.5 Despite medical advances resulting in reduced stroke mortality, disability after stroke remains a major concern and adds complexity to care transitions for this population. Given stroke prevalence, improving nurses’ engagement in optimizing care transitions for this population is essential. Readmissions after discharge from institutional settings to the community are a closely monitored measurement of care transition effectiveness. Readmissions may indicate unresolved problems, discharge to an inappropriate level of care, quality of immediate posthospital care, or a combination of these factors.6 Thirty-day readmission rates after hospital discharge are reported at 14.4%, with 11.9% of these determined as preventable.7 Readmissions after discharge from inpatient rehabilitation facilities range from 9.0% to 16.7%, varying with the severity of stroke impairment.8 Patients discharged to skilled nursing facilities have the highest 30-day readmission rates.9 Readmissions are associated with substantial economic burden on the healthcare …

Background Parkinson's disease is a degenerative neurological disorder affecting millions. Treatment priorities focus on delaying its progression and resulting disability, and helping individuals continue to live at home as long as possible. This often requires long-term assistance by family caregivers. Aims The purpose of the study was to understand (1) family caregivers' experiences in caring for a relative with Parkinson's disease, and (2) factors that influenced the decision to place the relative in a long-term care facility. Participants Twenty semi-structured interviews were conducted with adult family members (17 female, 3 male) acting as full-time primary caregivers for a relative with Parkinson's disease. Method Grounded theory was used to explore the process of healthcare decision-making and to illustrate the experiences of caring for persons with Parkinson's disease. The interview questions centered on family caregiving experiences and on how these caregivers made long-term care decisions on behalf of their loved ones. Data were coded and analyzed using dimensional analysis. Findings The caregiving model developed from the data illustrated that heightened caregiver strain—a risk factor for institutionalization—results from increased caregiving load and increased illness severity over time. Safety concerns, falls with severe injury, managing changes in health, and depleted support also influenced the decision to institutionalize the relative with Parkinson's disease. Conclusions Implications from this research suggest the need for enhanced communication between providers and caregivers, formalized caregiver assessments, improved care coordination and family-centered interventions to avoid premature institutionalization.

The study purpose was to implement a stroke-specific, care coordination home telehealth (CCHT) programme for US veterans with stroke and their family caregivers.In a non-randomized open trial using a mixed methods design, we tested the utility of a stroke-specific, home telehealth programme with 18 veterans and 14 caregivers for 14 days. Programme questions assessed physical impairment, depressive symptoms, and fall prevalence among veterans, and burden level among family caregivers. Nine veterans and six caregivers completed post-programme interviews exploring their experiences with telehealth.During the 14-day trial, 55% of the veterans screened positive for depression at least once, 36% of the caregivers had clinically significant burden, half of the veterans and caregivers reported post-stroke concerns, and 90% believed post-stroke contact from a care coordinator would have been helpful. In the interviews, seven veterans indicated they had fallen or almost fallen post-stroke. Themes centred on tailoring CCHT to individual needs, coordinating with support services, identifying safety issues, and providing information about stroke prevention.Home telehealth offers innovative ways to target post-stroke rehabilitation programmes to the needs and concerns of patients and their caregivers, and should include regular real-time contact between stroke patients and their healthcare providers.

Introduction: Accountable care and bundled payment initiatives have increased attention on inpatient post-acute care effectiveness. Empirical evidence for whether care at inpatient rehabilitation (IRF) or skilled nursing facilities (SNF) is associated with differential outcomes is limited. Methods: Data from the American Heart Association Get With The Guidelines-Stroke registry were linked with Medicare claims. We compared post-discharge mortality and a composite of all-cause rehospitalization or death for beneficiaries who received IRF or SNF care immediately after hospital discharge. Proportional hazards regression with inverse propensity weighting (IPW) was used to adjust for measured differences in demographic, clinical and hospital characteristics. Acknowledging the possibility of unmeasured differences between groups, an instrumental variable approach (IV=hospital-specific proportion of patients discharged to IRFs vs SNFs) was used to adjust for both measured and unmeasured confounding. Results: From 1,142 hospitals there were 34,574 AIS patients discharged to IRFs and 34,430 to SNFs. Patients receiving SNF vs IRF care were older (83 vs 79 years), had more comorbid illness, and higher unadjusted 7, 90, and 365 day mortality and rehospitalizations (Table). After IPW adjustment mortality and rehospitalization/mortality rates remained significantly better for patients with IRF vs SNF care (Table). Differences attenuated with IV analysis but IRF care continued to be associated with better outcomes (Table). Findings were similar in sensitivity analyses among patients with a NIHSS score. Conclusions: Receiving care at an IRF after AIS was associated with lower mortality and all-cause rehospitalization/death compared with SNF care even after rigorous adjustment for both measured and unmeasured differences in treatment selection. Further research is needed to discern the mechanisms for these potential differences between settings.

Stroke is a leading cause of severe, long-term disability. Most stroke survivors are cared for in the home by a family caregiver. Caregiver stress is a leading cause of stroke survivor institutionalization, which results in significant costs to the healthcare system. Stroke family caregiver and dyad intervention studies have reported a variety of outcomes. A critical analysis of 17 caregiver intervention studies and 15 caregiver/stroke survivor dyad intervention studies was conducted to provide evidence-based recommendations for the implementation and future design of stroke family caregiver and dyad interventions.

Background and Purpose— Stroke is the fourth-leading cause of death and a leading cause of long-term major disability in the United States. Measuring outcomes after stroke has important policy implications. The primary goals of this consensus statement are to (1) review statistical considerations when evaluating models that define hospital performance in providing stroke care; (2) discuss the benefits, limitations, and potential unintended consequences of using various outcome measures when evaluating the quality of ischemic stroke care at the hospital level; (3) summarize the evidence on the role of specific clinical and administrative variables, including patient preferences, in risk-adjusted models of ischemic stroke outcomes; (4) provide recommendations on the minimum list of variables that should be included in risk adjustment of ischemic stroke outcomes for comparisons of quality at the hospital level; and (5) provide recommendations for further research. Methods and Results— This statement gives an overview of statistical considerations for the evaluation of hospital-level outcomes after stroke and provides a systematic review of the literature for the following outcome measures for ischemic stroke at 30 days: functional outcomes, mortality, and readmissions. Data on outcomes after stroke have primarily involved studies conducted at an individual patient level rather than a hospital level. On the basis of the available information, the following factors should be included in all hospital-level risk-adjustment models: age, sex, stroke severity, comorbid conditions, and vascular risk factors. Because stroke severity is the most important prognostic factor for individual patients and appears to be a significant predictor of hospital-level performance for 30-day mortality, inclusion of a stroke severity measure in risk-adjustment models for 30-day outcome measures is recommended. Risk-adjustment models that do not include stroke severity or other recommended variables must provide comparable classification of hospital performance as models that include these variables. Stroke severity and other variables that are included in risk-adjustment models should be standardized across sites, so that their reliability and accuracy are equivalent. There is a pressing need for research in multiple areas to better identify methods and metrics to evaluate outcomes of stroke care. Conclusions— There are a number of important methodological challenges in undertaking risk-adjusted outcome comparisons to assess the quality of stroke care in different hospitals. It is important for stakeholders to recognize these challenges and for there to be a concerted approach to improving the methods for quality assessment and improvement.

The current process of care transitions for individuals with disabling conditions is both ineffective and inefficient. There is a need for clinicians with the necessary knowledge and skills to advocate and facilitate transitions that result in the greatest value to the patients, their families, and the healthcare delivery system. A review of the literature reveals significant problems with transitions to postacute care (PAC) settings. Care is fragmented, disorganized, and guided by factors unrelated to the quality of care or patient outcomes. Studies have demonstrated that the selection of a PAC setting for patients is influenced by multiple factors (Sandel et al., 2009; Gage, 2009). Patients’ clinically assessed needs often do not match the level of care determined by decision makers because optimal patient outcomes may not be the primary factor considered. Competing factors include proximity of providers, relationships between providers of care, payer source, and variation in the interpretations of regulations regarding PAC. Decision makers may include the patient, family members, discharge planners, physicians, insurance company representatives, social workers, and other healthcare providers. Many times, these decision makers lack adequate information to make the best decision during care transition planning. Consequently, care transitions remain a confusing time for patients and their families and can result in both overuse and underuse of PAC services and sub-optimal quality of care and clinical outcomes. Families involved in PAC transitions often feel overwhelmed and dissatisfied (Lutz, Young, Cox, Martz, & Creasy, 2011). PAC is a significant part of the overall care of many Medicare patients. Up to 35% of Medicare patients are discharged each year to a PAC setting (Gage, 2009). Of those Medicare patients discharged, almost one-fourth of Medicare beneficiaries discharged from the hospital to a skilled nursing facility were readmitted to the hospital within 30 days (Mor, Intrator, Feng, & Grabowski, 2010). PAC is provided in various settings, including skilled nursing facilities, inpatient rehabilitation facilities, longterm care hospitals, in the home by home healthcare agencies, and outpatient centers. PAC is provided by a wide array of specialized clinicians from physical therapists, occupational therapists, physicians, speech-language pathologists, neuropsychologists, social workers, discharge planners, and nurses with and without rehabilitation expertise. Rehabilitation is a key component of the care provided in each of these settings. About 30%–60% of the older patients develop new dependence in activities of daily living (ADL) during an acute care hospital stay, which can result in progressive disability after discharge (Huang, Chang, Liu, Lin, & Chen, 2013). Determining the best setting for the patient requires a thorough understanding of rehabilitation services and evidenced-based outcomes to evaluate appropriateness of care for the patient. Pilot studies have demonstrated that when a nurse with an understanding of care transitions is integrated into the process, unplanned 30-day hospital readmission rates decline and outcomes are improved (Congressional Research Service [CRS], 2010).

Approximately 4.8 million stroke survivors are living in the community with some level of disability requiring the assistance of family caregivers. Stroke family caregivers are often unprepared for the demands required of them. The purpose of this grounded theory study was to explore the needs of stroke patients and their family caregivers as they transitioned through the stroke care continuum from acute care to inpatient rehabilitation to home.Thirty-eight participants, 19 recovering stroke patients (11 male, 8 female), 15 primary family caregivers (14 spouses, 1 mother), and 4 adult children were interviewed during their stay at a rehabilitation facility and within 6 months of discharge. Interview questions were loosely structured and focused on the stroke experience and how patients and caregivers were managing postdischarge. Data were analyzed using dimensional and comparative analysis.Findings were organized in a conceptual framework illustrating the trajectory of the crisis of stroke. Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory: the stroke crisis, expectations for recovery, and the crisis of discharge. Findings from this study suggest that as caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing, and they are often underprepared to take on even the basic tasks to meet the patients' needs on discharge.Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let al.one the crisis of discharge and all of the new responsibilities with which they must deal.

Introduction: More than 3.5 million family caregivers provide assistance with activities and instrumental activities of daily living for stroke survivors living at home. Studies consistently indicate that stroke family caregivers are inadequately assessed and under prepared for their new caregiver roles and responsibilities as stroke survivors transition home from inpatient rehabilitation. Several tools exist to assess caregivers once they have assumed the caregiving role, however, there are no tools assess stroke caregiver readiness prior to discharge. Research has indicated the need for a thorough and systematic pre-discharge assessment of the caregiver’s ability to assume the caregiving role. The purpose of this presentation is to describe ten critical stroke caregiver readiness assessment domains and to discuss their relevance for long-term outcomes for stroke survivors and family caregivers. Methods: In this grounded theory study, data were collected from19 persons with stroke and 19 family caregivers. Semi-structured interviews were conducted during inpatient rehabilitation and within 6 months post-discharge. First interviews focused on expectations for recovery and caregiving needs post-discharge. Follow-up interviews focused on how families managed the transition from rehabilitation to home and how their initial expectations matched the reality of their post-discharge experience. Interviews were analyzed using dimensional analysis and coded in NVivo data management software. Findings: Participants indicated that stroke was an overwhelming, life changing crisis event. Family members felt abandoned, isolated, and under prepared to assume the fulltime caregiving role as stroke survivors transitioned home. They described using ineffective or risky caregiving strategies that resulted in safety and health issues for both stroke survivors and caregivers. Ten pre-discharge caregiver readiness assessment domains were identified in the interviews and a corresponding stroke caregiver readiness assessment interview guide was developed. Conclusion: Stroke survivors and family caregivers are extremely vulnerable as they transition home from inpatient rehabilitation leaving them at risk for poorer health, depression, and increased risk for injury. In order to prevent these deleterious outcomes, caregivers should be assessed, and potential areas of risk identified and addressed prior to discharge from inpatient rehabilitation. As new interventions are developed to improve survival rates for persons with stroke, we must also develop and implement primary prevention strategies for family members who are called upon to provide care following discharge to protect their health and improve the long-term recovery outcomes for the stroke survivor.

Objectives. We evaluated the effectiveness of a community-based participatory research–grounded intervention among women receiving Temporary Assistance for Needy Families (TANF) with chronic health conditions in increasing (1) health care visits, (2) Medicaid knowledge and skills, and (3) health and functional status. Methods. We used a randomized controlled trial design to assign 432 women to a public health nurse case management plus Medicaid intervention or a wait-control group. We assessed Medicaid outcomes pre- and posttraining; other outcomes were assessed at 3, 6, and 9 months. Results. Medicaid knowledge and skills improved (P Conclusions. Health outcomes among women receiving TANF can be improved with public health interventions. Additional strategies are needed to further reduce health disparities in this population.

Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke-recovery trajectory.

Objective: Research is essential for guiding public health nursing practice with low-income and/or minority populations. Despite this, little is known about fundamental recruitment problems, the degree to which the informed consent process is comprehended, or how critical a role trust may play in conducting successful research with these groups. This article describes factors influencing recruitment of underrepresented groups, preferences for the informed consent process, and degree of trust participants extended to researchers. Design/Sample: A descriptive survey was used in this community-based participatory research study with low-income women. Results: The response rate was 58% (n=35 of 60 sample). The most compelling reason for enrolling was that the researchers recognized an unmet health need among the population (91%), followed by the opportunity to talk with other women in similar circumstances (74%), and the fact that nurses were conducting the study (57%). Comprehension of informed consent was high, most preferred a “group” consent process, and 100% trusted the researchers to follow procedures outlined in the informed consent document. Conclusion: Although findings support previous research regarding increased likelihood of enrollment when there is concordance between enrollees' goals and study topic, the establishment of trust between potential enrollees and researchers cannot be underestimated.

The Low Activities of Daily Living Monitoring Program (LAMP) at the North Florida/South Georgia Veterans Health System is a telerehabilitation program that promotes independence for veterans experiencing difficulties with activities of daily living by focusing on a combination of care coordination, assistive technology/adaptive equipment, and home environmental modifications. Initially designed to serve elders at risk of institutionalization, LAMP now is being adapted to the needs of veterans living with the effects of multisystem polytrauma. This article provides an overview of telehealth, explains the LAMP model, and presents a case history of a veteran who sustained complete tetraplegia and traumatic transfemoral amputation as the result of a blast injury and who lives successfully at home with the support of LAMP. A recent cost analysis of LAMP patients compared to a matched cohort receiving standard care also is presented. The LAMP model shows promise as a method for home-based management of combat-wounded veterans who experience multisystem polytrauma.

Stroke is a life-disrupting, costly event for many stroke patients and their families. An estimated 4.8 million stroke survivors are living in the community with some level of disability, and the incidence of stroke is expected to rise with correspondingly higher costs, both in dollars and other forms of burden for families of patients with stroke. Approximately 80,000 veterans have experienced a stroke, leaving approximately 40% with moderate residual impairments and 15%-30% with severe residual disability.The purpose of this study was to identify postdischarge needs of veterans with stroke and their caregivers and to identify how to design a care coordination/home-telehealth (CC/HT) program to address these needs.Veterans and their caregivers (N = 22) were interviewed about their experiences with stroke, their postdischarge stroke recovery needs, and their experiences with the Veterans Administration's existing Care Coordination/Home-Telehealth (CC/HT) program. Data were analyzed using the process of grounded dimensional analysis.Core concepts identified were (a) assessing and managing the residual effects of stroke, and (b) shifting roles and responsibilities.The findings suggest that a comprehensive care coordination program that includes home telehealth could aid veterans and their caregivers in managing stroke recovery across the continuum of care at home and within the community. The results of the study can provide elements to be included in the CC/HT program.

Discharge to community is an important outcome measure for rehabilitation facilities. Studies consistently find that stroke patients with higher scores on the Functional Independence Measure (FIM) are more likely to be discharged to the community. Other variables, including age, gender, and living status, also have shown a relationship to discharge destination for stroke patients. This study explored the differences between stroke patients who were discharged to the community and those who were discharged to a nursing home after a stay on an acute inpatient rehabilitation unit. Results indicated that older patients and those with lower admission FIM scores are more likely to be discharged to nursing homes, but many patients who fit this profile are discharged to the community. The main destination determinant was how well a patient's need for care matched informal caregiving resources. These findings indicate a need for additional focused assessment of available care giving resources.

Commentary on: DH Saunders, CA Greig, GE Mead, et al.. Physical fitness training for stroke patients. Cochrane Database Syst Rev2009:CD003316.