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Recognizing family caregivers as vital providers of long-term assistance to loved ones with chronic illness, several national organizations developed recommendations to improve support for family caregivers.This article categorizes these recommendations to advance family-centered nursing practice, develop health policies, and advocate for family caregiver support.Six reports of caregiver recommendations published in the United States from 2016 to 2021 were analyzed using thematic analysis.The 108 recommendations were organized into five categories: policy; caregiver assessment and support; health professional practices; public awareness; advance care planning.Ensuring economic security, establishing a national data collection strategy, addressing caregivers' diverse needs, improving access to health care and support services, and increasing public awareness were highlighted.The recommendations provide a roadmap for nurses at all levels of practice to advocate for a national agenda to develop, fund, and implement inclusive health care policies and interventions to address unmet caregiver needs and maximize support.

Stroke patients discharged home often require prolonged assistance from caregivers. Little is known about the real-world effectiveness of a comprehensive stroke transitional care intervention on relieving caregiver strain. To describe the effect of the COMPASS transitional care (COMPASS-TC) intervention on caregiver strain and characterize the types, duration, and intensity of caregiving. The cluster-randomized COMPASS pragmatic trial evaluated the effectiveness of COMPASS-TC versus usual care with patients with mild stroke and TIA at 40 hospitals in North Carolina, USA. Of 5882 patients enrolled, 4208 (71%) identified a familial caregiver. A follow-up Caregiver Questionnaire, including the Modified Caregiver Strain Index, was administered at approximately three months post-discharge. Demographics and frequency, duration, and intensity of caregiving were compared between groups. 1228 caregivers (29%) completed the questionnaire. Completion was positively associated with older patient age, white race, and spousal relationship. One-third of the caregivers provided ≥30 hours of care per week and 889 (79%) provided care ≥9 weeks. Average standardized caregiver strain was 21.9 (0–100), increasing with stroke severity and comorbidity burden. Women caregivers reported higher strain than men. Treatment allocation was not associated with caregiver strain. This sample of mild stroke and TIA survivors received significant assistance from familial caregivers. However, caregiver strain was relatively low. Findings support the importance of familial caregiving in stroke, the continued disproportionate burden on women within the family, and the need for future research on caregiver support.

Informal caregivers are an essential component of stroke survivor care, yet they are at risk for poorer outcomes due to their own unmet needs, feelings of isolation and abandonment, and lack of personal resources. While a substantial body of research literature on stroke caregiving exists, there is a notable research gap related to the specific needs of working age (18-64) stroke caregivers. The purpose of this study was to characterize unmet needs and concerns, caregiver self-efficacy, social support, and quality of life of working age caregivers of stroke survivors. A cross-sectional descriptive design was used. Participants (N=103) included family or friends that provided unpaid care for a stroke survivor outside of healthcare institutions recruited through national organizations, local support groups, and Facebook ads. Participants completed an online survey comprised of questions exploring sociodemographic characteristics, stroke survivor functional independence, perceived social support, and caregiver needs and concerns, strain, self-efficacy, and quality of life. Descriptive statistics and linear regression analysis were performed using the IBM Statistical Program for Social Sciences (SPSS) v28 software package. In individual regression models, stroke survivor functional independence, caregiver self-efficacy, perceived social support, race, gender, relationship with the stroke survivor, transportation, and responsibilities outside of the caregiving role were predictive of caregiver quality of life. In multiple regression models, stroke survivor functional independence, caregiver self-efficacy, race and gender were statistically significant predictors of caregiver quality of life. In conclusion, this study adds to the current literature by exploring unmet needs and concerns of working age caregivers of stroke survivors and relationships between caregiver quality of life and sociodemographic characteristics, stroke survivor functional independence, perceived social support, and caregiver needs and concerns, strain, and self-efficacy. A greater understanding of these needs can inform intervention designs to meet the unique needs of a diverse population of informal caregivers of stroke survivors.

Introduction: Evidence-based rehabilitation and secondary prevention interventions improve post-stroke functional recovery and reduce secondary complications. However, stroke rehabilitation expertise, processes of care, and educational resources vary among sites where post-acute care (PAC) is delivered. Purpose: The American Heart Association (AHA) developed quality standards based on the AHA 2016 Guidelines for Adult Stroke Rehabilitation and Recovery to address these gaps. Methods: An interdisciplinary PAC standards writing committee identified key areas for PAC: quality improvement, medical management, care coordination, patient/caregiver and personnel education, and program management. Subgroups developed draft standards, combining results from a national landscape survey of PAC sites with clinical practice guidelines. The committee then refined the draft standards using a consensus-based process. AHA staff and PAC sites in Montana (MT) convened a learning collaborative to gather feedback and provide gap analyses of the standards relative to current practices. Qualitative input from beta testing in MT, and quantitative results from the nationwide survey and MT sites were analyzed and used to refine the standards further. Results: The national landscape survey demonstrated that most sites do not meet the proposed standards: stroke program oversight structure (78% fall short), stroke rehabilitation leadership (70%), stroke-specific order sets/protocols (61%), and policies requiring staff stroke education (66%). Regarding MT findings, 41% of the PAC sites have no mechanisms to identify areas of quality improvement specific to their stroke rehabilitation programs, and 59% do not use standardized tools to ensure performance improvement initiatives are followed. However, with adequate support and resources, most MT sites stated they would be able to meet the proposed standards. Conclusions: The Stroke PAC Program Standards are applicable in diverse PAC settings and provide a pathway to improving access to high-quality care for stroke survivors. Outcome studies are needed to confirm anticipated improvements in medical and functional outcomes.

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.

Self-management of a chronic illness is a struggle for many patients. There is substantial evidence that patients are not as successful as they and their providers would like. Considering patient self-management through an innovative and diverse lens could help patients, providers and the health care system to consider novel changes to improve success.To provide a complete view of patient work by utilizing the human resources management practice of job analysis to develop an initial job description for patients suffering from chronic illness.Study design was descriptive qualitative with analysis aiming to identify those reoccurring ideas from the data. Thirty patients, with at least one chronic illness, in three focus groups were assembled for this study. Verbatim recordings and notes were used to categorize the data provided. Five coders analyzed the data independently, and jointly met to discuss the themes identified. Demographic data was collected via surveys.Patients with chronic illness engage in five primary 'job' duties including self-care (actions taken to effectively manage physical and psychological symptoms), managing relationships (effective management of relationships with employers, family, friends and providers to ensure the best outcomes), managing resources (understanding and managing finances, health and prescription medication insurance), coordination (managing and scheduling visits to providers) and research/education (gathering information and conducting research relative to all aspects of managing one's illness). Relevant knowledge, skills, abilities (KSAs) and other resources were identified that are necessary for patients to effectively perform the five job duties.Creating a job description for the 'job' of patient is a crucial step in understanding the work chronically ill patients undertake. Knowing the duties, their associated tasks and KSAs, and resources required to perform those tasks enables patients and their providers and advocates to better identify ways to assist, relieve and encourage these patients in order to maximize patient success.

Glioblastoma (GBM) is a devastating and terminal cancer that results in memory loss, cognitive declines, personality changes, neuropsychiatric symptoms, and physical impairments that greatly affect quality of life of both the patient with GBM and their primary caregiver, who is often a spouse or partner. These caregivers describe feeling unsupported and unprepared to assume the responsibilities associated with addressing the progressive physical, emotional, and psychological support needs of their loved ones with GBM. In this qualitative study, female spouse primary caregivers were recruited through a private Facebook support group to write letters describing their experiences in caring for their loved ones with GBM. Using a reflexive thematic analysis, 101 letters from caregivers were analyzed for unmet needs, challenges, and opportunities for better care and support. Caregivers expressed feeling unsupported and poorly prepared, and described different levels and types of needs and challenges throughout the GBM disease trajectory. The 4 phases of the trajectory included the acute phase (first 2-4 months post diagnosis), living with disease progression, end of life stage, and the bereavement stage. Challenges included difficulties adapting to sudden life changes, the need for more education on what to expect, feelings of sudden loss, relationship strain, and not having enough knowledge about GBM. Associated emotional responses included feelings of fear, lack of control, agony, disappointment, and exhaustion. These challenges and emotional impact were greatest during the acute and living with disease progression phases. Caregivers also described relying heavily on friends, community supports (such as faith groups), peer-support through the Facebook group during this living with disease progression phase, but still experienced high levels of relationship strain and other unmet needs. These findings on the primary caregivers’ experiences provide opportunities to guide more timely and tailored interventions to provide support and improve care for patient/caregiver dyads to help mitigate the burden of this progressive disease and improve quality of life for caregivers. Citation Format: Diana L. Coman, Megan Chard, Lisa Desautels, Barbara J. Lutz, Laurie Minns. Spouse caregivers of patients with glioblastoma report unmet needs throughout the disease trajectory. [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 5540.

PURPOSE The aim of this study was to evaluate psychometric properties of the Preparedness Assessment for the Transition Home After Stroke (PATH-s), a novel instrument to assess stroke caregiver commitment and capacity. The PATH-s instrument can be obtained at www.rehabnurse.org/pathtool. DESIGN The design of this study is cross-sectional. METHODS The PATH-s, the Preparedness for Caregiving Scale (PCS), the Patient Health Questionnaire, the Perceived Stress Scale, and the Global Health Scale were self-reported from a convenience sample of caregiver-stroke survivor dyads (n = 183) during inpatient rehabilitation. RESULTS Exploratory factor analysis revealed eight factors underlying the PATH-s structure. The PATH-s Cronbach's alpha of .90 demonstrated criterion-related validity with the PCS (r = .79, p .05) and positively correlated with the Global Health Scale (r = -.46 and .46, respectively; p < .01), indicating convergent validity. CONCLUSIONS The PATH-s demonstrates excellent internal consistency and satisfactory criterion-related and convergent validity. CLINICAL RELEVANCE The PATH-s may be used to assess the risk/needs of caregivers over time.

Purpose The aim of the study was to better understand caregivers' concerns about long-term implications of stroke and the caregiving role after completing the Preparedness Assessment for the Transition Home After Stroke (PATH-s). Design/methods In this qualitative study, cognitive interviews were conducted with 20 stroke caregivers who completed the PATH-s tool as part of an instrument validation study. Data were analyzed for salient themes related to their perceptions about stroke and the caregiving role. Findings Interviews yielded robust narrative data describing how the PATH-s items aided caregivers in recognizing potential issues and concerns about stroke and the caregiving role. Caregivers experienced uncertainty about the long-term stroke prognosis, which provoked anticipation and cues to action to begin addressing their concerns. Conclusions/clinical relevance Completing the PATH-s helped caregivers identify concerns regarding the long-term implications of stroke and their caregiving role. It may serve as an important assessment tool to assist rehabilitation nurses to better understand and address caregiver needs predischarge.

Caregivers of stroke survivors often experience adverse health effects due to poor preparation.We evaluate the concurrent and predictive validity of the Preparedness Assessment for the Transition Home after Stroke (PATH-s) family caregiver assessment tool relative to important domains of caregiver health and stroke survivor outcomes.A convenience sample of caregivers (N = 183) was assessed on several health-related quality of life instruments prior to stroke survivor discharge (T1), and at 30-days (T2) and 90-days (T3) post-discharge.Caregivers completed assessments at T1 (N = 183), T2 (N = 116, 63%), and T3 (N = 97, 53%). At T1, the PATH-s demonstrated concurrent validity with depressive symptoms (r = -0.26, p .001), global health (r = 0.45 p .001) and activation (r = 0.34, p .001). The PATH-s also has predicted improvements in T2 outcomes including depressive symptoms (rThe PATH-s demonstrates good concurrent and predictive validity and predicts important domains relevant to caregiver well-being. This can be used to identify gaps in caregiver preparedness so interventions can be tailored to optimize the transition home and mitigate adverse effects of caregiving.

Introduction: Family caregivers (CG) are an essential component of stroke care transitions. Restrictions in family visitation in inpatient rehabilitations units due to COVID-19 has limited training opportunities for CGs. In this study, visitation to the inpatient rehabilitation unit was restricted by policy to one day of CG training as a result of the COVID-19 pandemic. Caregivers were assessed using the 25-item self-reported Preparedness Assessment for the Transition Home (PATH) instrument. Methods: The study cohort was stratified into 2 study groups: pre- (discharge [D/C] from the IRU before 3/16/2020; n=136) and post- (D/C after 3/16/2020; n=142) visitation policy change We calculated proportions of categorical clinical and demographic variables (age, income, gender, race, marital status, CG gender, relationship) and compared them between 2 study groups using Chi-squared tests. Means (standard deviations) for the overall PATH score and for each PATH domain were calculated and compared between study groups using independent samples t-tests. Results and Conclusions: No statistically significant differences in characteristics between groups were found, nor in the overall PATH score. However, the difference between the pre- and post- policy change groups in the domain of prognosis and insight was significant (P=0.04). The items in this domain are listed below. Providers must find innovative ways to communicate information about recovery, the impact of stroke, required preparations, and care needs during times of restricted visitation to improve caregiver preparedness during inpatient rehabilitation.

Informal caregivers of stroke survivors often report the need for training on how to care for a loved one with functional mobility limitations. Evidence on training interventions to help informal caregivers with issues related to mobility is varied. The objective of this scoping review was to examine the literature including skill-based training interventions that educate caregivers on functional mobility for stroke survivors. We extracted studies from OVID Medline, Cochrane, ISI Web of Knowledge, and Embase published between 1990 and 2021. At every stage of assessment, data extraction forms were used to reach consensus among at least three out of four authors. We followed PRISMA-ScR guidelines and Arskey and O’Malley’s framework to chart information into several tables based on research questions and summarized with descriptive statistics. Most studies were conducted outside the US focused on training in mobility and activities of daily living. The stroke survivor, on average, was an older individual (mean age 64.8 [SD = 5.3] years). The informal caregiver was predominately a younger female spouse (mean age 54.2 [SD = 6.3]). More than a third of the studies reported improvement in the stroke survivors’ physical function post-intervention, with a mean follow-up time of 4.4 months. Effective studies tended to include stroke survivors with less cognitive and functional mobility limitations at higher training dosages. Gaps in our understanding of informal caregiver training for those caring for stroke survivors are identified, and recommendations are provided for future research.

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.

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.

Purpose The study purpose was to develop a measure to assess stroke caregivers' commitment and capacity to assume the caregiving role prior to discharge. Design Participants were caregivers of stroke survivors in an inpatient rehabilitation facility. Methods A sequential, multimethod approach, which included item generation from qualitative data, review of items by expert clinicians, cognitive interviews to determine response format (n = 22), and item clarity (n = 20), and an analysis of pilot data were utilized. Findings Cognitive interviewing provided information to improve item clarity. Conclusion This instrument development approach resulted in the Preparedness Assessment for the Transition Home After Stroke (PATH-s), a 26-item self-report instrument. The PATH-s represents the domains of the Model of Caregiver Readiness, upon which the instrument was developed. Clinical relevance The PATH-s, once further validated, may guide healthcare providers in the development of tailored care plans to address identified gaps and better prepare caregivers for the transition home.

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.

The aim of this study was to evaluate psychometric properties of the Preparedness Assessment for the Transition Home After Stroke (PATH-s), a novel instrument to assess stroke caregiver commitment and capacity. The PATH-s instrument can be obtained at www.rehabnurse.org/pathtool.The design of this study is cross-sectional.The PATH-s, the Preparedness for Caregiving Scale (PCS), the Patient Health Questionnaire, the Perceived Stress Scale, and the Global Health Scale were self-reported from a convenience sample of caregiver-stroke survivor dyads (n = 183) during inpatient rehabilitation.Exploratory factor analysis revealed eight factors underlying the PATH-s structure. The PATH-s Cronbach's alpha of .90 demonstrated criterion-related validity with the PCS (r = .79, p.01). Both the PATH-s and the PCS were negatively correlated with the Patient Health Questionnaire (r = -.26 and -.27, respectively; p.01) and the Perceived Stress Scale (r = -.12 and -.15, respectively; p.05) and positively correlated with the Global Health Scale (r = -.46 and .46, respectively; p.01), indicating convergent validity.The PATH-s demonstrates excellent internal consistency and satisfactory criterion-related and convergent validity.The PATH-s may be used to assess the risk/needs of caregivers over time.

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

The purpose of this article is to describe how researchers and community stakeholders can use Charrette processes to effectively build partnerships and stimulate successful community-based participatory research (CBPR). The term “Charrette” originated in the architectural design field. Kotval et al. (2014) described the Charrette as “a process of collaboration, intense dialogue and deliberation among participants to promote understanding and facilitate planning activity” (p. 494). The use of Charrette in CBPR is still an emerging concept in the literature, however, a few key studies have demonstrated that Charrette is a promising tool for CBPR researchers and stakeholders. Kennedy’s (2017) eight Charrette characteristics serve as an evaluative framework for examining the use of the Charrette in the two CBPR projects described in this paper. These cases illustrate how the CBPR Charrette was tailored to fit the needs of the project stakeholders. Recommendations for utilizing the CBPR Charrette are discussed, and important considerations are highlighted for community and academic groups who engage patients and community stakeholders in the research process.

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.

The aim of the study was to better understand caregivers' concerns about long-term implications of stroke and the caregiving role after completing the Preparedness Assessment for the Transition Home After Stroke (PATH-s).In this qualitative study, cognitive interviews were conducted with 20 stroke caregivers who completed the PATH-s tool as part of an instrument validation study. Data were analyzed for salient themes related to their perceptions about stroke and the caregiving role.Interviews yielded robust narrative data describing how the PATH-s items aided caregivers in recognizing potential issues and concerns about stroke and the caregiving role. Caregivers experienced uncertainty about the long-term stroke prognosis, which provoked anticipation and cues to action to begin addressing their concerns.Completing the PATH-s helped caregivers identify concerns regarding the long-term implications of stroke and their caregiving role. It may serve as an important assessment tool to assist rehabilitation nurses to better understand and address caregiver needs predischarge.

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

Introduction Many older patients experience repeated emergency department visits and hospitalizations and inadequate links to primary care. This fragmented care can result in anxiety, uncertainty, and poor health outcomes. This study compares the impact of an emergency department-to-home coaching intervention to usual, post-emergency department care on patient-reported health-related quality of life measures: information support, anxiety, and physical function. Methods This was a randomized controlled trial. Seven hundred and forty-nine chronically ill older adults presenting to emergency departments were randomized into Intervention (emergency department-to-home coaching) or Usual Care groups. Participants completed baseline, in-person and follow-up, telephone surveys. Within- and between-group differences in health-related quality of life were assessed using unweighted linear regression and propensity-weighted difference-in-difference analyses. Three Patient Reported Outcomes Measurement System measures were assessed: social health (informational support), mental health (anxiety/emotional distress), and physical health (physical functioning). Results Usual Care participants experienced statistically significant declines in informational support in unweighted (−3.13) and weighted (−2.84) analyses not observed in the Intervention group (−0.91 and −1.45, respectively). Self-reported anxiety was lowest and physical function highest at the time of emergency department visit. Patient-reported anxiety increased and physical function declined statistically significantly in Intervention participants. Conclusion Among older emergency department patients, health-related quality of life was highest at the emergency department visit and declined following the encounter. The emergency department visit per se appears to provide needed information, and in the short term, reassurance about patients’ medical conditions. The coaching intervention blunts the fall in informational support observed after usual, post-emergency department care but may heighten patients’ anxiety and awareness of chronic health conditions.

Background Patients discharged home after stroke face significant challenges managing residual neurological deficits, secondary prevention, and pre-existing chronic conditions. Post-discharge care is often fragmented leading to increased healthcare costs, readmissions, and sub-optimal utilization of rehabilitation and community services. The COMprehensive Post-Acute Stroke Services (COMPASS) Study is an ongoing cluster-randomized pragmatic trial to assess the effectiveness of a comprehensive, evidence-based, post-acute care model on patient-centered outcomes. Methods Forty-one hospitals in North Carolina were randomized (as 40 units) to either implement the COMPASS care model or continue their usual care. The recruitment goal is 6000 patients (3000 per arm). Hospital staff ascertain and enroll patients discharged home with a clinical diagnosis of stroke or transient ischemic attack. Patients discharged from intervention hospitals receive 2-day telephone follow-up; a comprehensive clinic visit within 2 weeks that includes a neurological evaluation, assessments of social and functional determinants of health, and an individualized COMPASS Care Plan™ integrated with a community-specific resource database; and additional follow-up calls at 30 and 60 days post-stroke discharge. This model is consistent with the Centers for Medicare and Medicaid Services transitional care management services provided by physicians or advanced practice providers with support from a nurse to conduct patient assessments and coordinate follow-up services. Patients discharged from usual care hospitals represent the control group and receive the standard of care in place at that hospital. Patient-centered outcomes are collected from telephone surveys administered at 90 days. The primary endpoint is patient-reported functional status as measured by the Stroke Impact Scale 16. Secondary outcomes are: caregiver strain, all-cause readmissions, mortality, healthcare utilization, and medication adherence. The study engages patients, caregivers, and other stakeholders (including policymakers, advocacy groups, payers, and local community coalitions) to advise and support the design, implementation, and sustainability of the COMPASS care model. Discussion Given the high societal and economic burden of stroke, identifying a care model to improve recovery, independence, and quality of life is critical for stroke survivors and their caregivers. The pragmatic trial design provides a real-world assessment of the COMPASS care model effectiveness and will facilitate rapid implementation into clinical practice if successful. Trial registration Clinicaltrials.gov: NCT02588664; October 23, 2015. Electronic supplementary material The online version of this article (doi:10.1186/s12883-017-0907-1) contains supplementary material, which is available to authorized users.

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.

Background and Objectives Stroke is a chronic, complex condition that disproportionally affects older adults. Health systems are evaluating innovative transitional care (TC) models to improve outcomes in these patients. The Comprehensive Post-Acute Stroke Services (COMPASS) Study, a large cluster-randomized pragmatic trial, tested a TC model for patients with stroke or transient ischemic attack discharged home from the hospital. The implementation of COMPASS-TC in complex real-world settings was evaluated to identify successes and challenges with integration into the clinical workflow. Research Design and Methods We conducted a concurrent process evaluation of COMPASS-TC implementation during the first year of the trial. Qualitative data were collected from 4 sources across 19 intervention hospitals. We analyzed transcripts from 43 conference calls with hospital clinicians, individual and group interviews with leaders and clinicians from 9 hospitals, and 2 interviews with the COMPASS-TC Director of Implementation using iterative thematic analysis. Themes were compared to the domains of the RE-AIM framework. Results Organizational, individual, and community factors related to Reach, Adoption, and Implementation were identified. Organizational readiness was an additional key factor to successful implementation, in that hospitals that were not “organizationally ready” had more difficulty addressing implementation challenges. Discussion and Implications Multifaceted TC models are challenging to implement. Facilitators of implementation were organizational commitment and capacity, prioritizing implementation of innovative delivery models to provide comprehensive care, being able to address challenges quickly, implementing systems for tracking patients throughout the intervention, providing clinicians with autonomy and support to address challenges, and adequately resourcing the intervention. Clinical Trial Registration NCT02588664

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.

Background Palliative care practice often includes the need for health providers to have difficult conversations with patients and families. These conversations may include discussing diagnoses, prognoses, test results and care options. Purpose This innovative project used interactive theater as a means of teaching undergraduate and graduate health professional students evidence-based methods for delivering difficult health news in health care settings. Method The university partnered with a professional interactive theater company to host a production focused on care team communication and delivery of difficult health news to family caregivers of an older adult experiencing an acute stroke. Discussion The use of this modality allowed audience members to interact with the actors, who remained in character, to discuss the case scenario. Conclusions Audience members were surveyed using an investigator-developed posttest survey instrument, and positive quantitative and qualitative data confirmed the usefulness and feasibility of using interactive theater in educating health professionals.

Introduction Holistic comfort is an essential component of pediatric procedural care. However, a main gap in the literature is the ability to measure this. In this study, researchers report the feasibility of implementing a newly developed psychosocial measurement instrument in clinical practice. Method This mixed methods study was guided by Kolcaba's holistic comfort theory. Descriptive and inferential statistics and a qualitative descriptive approach to cognitive interviewing were used. Children aged 4 to 8 years (n = 16) experiencing a nonurgent needle procedure and registered nurses (n = 14) who administered the instrument were recruited. Results Eight qualitative themes of feasibility and comprehensibility were identified. Perspectives of children and nurses were not significantly associated with any demographic variable. The Pediatric Procedural Holistic Comfort Assessment is a feasible instrument to implement but will benefit from minor revisions. Discussion This study has implications for nursing practice, research methodology, and future research. The Pediatric Procedural Holistic Comfort Assessment can be successfully implemented by nurses in health care settings.

Background Patient-reported outcomes (PROs) are clinical tools that measure patients’ goals of care and assess patient-reported physical, mental, and social well-being. Despite their value in advancing patient-centered care, routine use of PROs in stroke management has lagged. As part of the pragmatic COMPASS (Comprehensive Post-Acute Stroke Services) trial, we developed COMPASS-Care Plan (CP), a clinician-facing application that captures and analyzes PROs for stroke and transient ischemic attack patients discharged home and immediately generates individualized electronic CP. In this report, we (1) present our methods for developing and implementing COMPASS-CP PROs, (2) provide examples of CP generated from COMPASS-CP, (3) describe key functional, social, and behavioral determinants of health captured by COMPASS-CP, and (4) report on clinician experience with using COMPASS-CP in routine clinical practice for care planning and engagement of stroke and transient ischemic attack patients discharged home. Methods and Results We report on the first 871 patients enrolled in 20 North Carolina hospitals randomized to the intervention arm of COMPASS between July 2016 and February 2018; these patients completed a COMPASS follow-up visit within 14 days of hospital discharge. We also report user satisfaction results from 56 clinicians who used COMPASS-CP during these visits. COMPASS-CP identified more cognitive and depression deficits than physical deficits. Within 14-day posthospitalization, less than half of patients could list the major risk factors for stroke, 36% did not recognize blood pressure as a stroke risk factor, and 19% of patients were nonadherent with prescribed medications. Three-fourths of clinicians reported that COMPASS-CP identifies important factors impacting patients’ recovery that they otherwise may have missed, and two-thirds were highly satisfied with COMPASS-CP. Conclusions The COMPASS-CP application meets an immediate need to incorporate PROs into the clinical workflow to develop patient-centered CP for stroke patients and has high user satisfaction. Clinical Trial Registration URL: https://www.clinicaltrials.gov . Unique identifier: NCT02588664.

Many individuals who have had a stroke leave the hospital without postacute care services in place. Despite high risks of complications and readmission, there is no standard in the United States for postacute stroke care after discharge home. We describe the rationale and methods for the development of the COMprehensive Post-Acute Stroke Services (COMPASS) care model and the structure and quality metrics used for implementation. COMPASS, an innovative, comprehensive extension of the TRAnsition Coaching for Stroke (TRACS) program, is a clinician-led quality improvement model providing early supported discharge and transitional care for individuals who have had a stroke and have been discharged home. The effectiveness of the COMPASS model is being assessed in a cluster-randomized pragmatic trial in 41 sites across North Carolina, with a recruitment goal of 6,000 participants. The COMPASS model is evidence based, person centered, and stakeholder driven. It involves identification and education of eligible individuals in the hospital; telephone follow-up 2, 30, and 60 days after discharge; and a clinic visit within 14 days conducted by a nurse and advanced practice provider. Patient and caregiver self-reported assessments of functional and social determinants of health are captured during the clinic visit using a web-based application. Embedded algorithms immediately construct an individualized care plan. The COMPASS model's pragmatic design and quality metrics may support measurable best practices for postacute stroke care.

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.

Care transitions for individuals with disabling conditions, such as stroke, are often ineffective and inefficient, resulting in unmet patient and caregiver (CG) needs, increased safety risks, high rates of preventable readmissions, and increased health care costs. This is particularly problematic for stroke patients transitioning from an inpatient rehabilitation facility (IRF) to home. There is no assessment instrument specifically designed to evaluate a family member’s commitment and capacity to assume the caregiving role following a stroke survivor (SS) discharge from an IRF or sub-acute facility. This is critically needed to facilitate the development of tailored care plans and interventions to mitigate risks associated with the crisis of stroke and the associated health effects on the CG and SS. The purpose of this study is determine the psychometric properties of the Preparedness Assessment for the Transition Home after Stroke (PATH-s) instrument. The PATH-s instrument is a 25-item, 4-point scale based on the foundational work of B. Lutz (Co-Investigator). A prospective cohort study was conducted to establish the psychometric properties of the PATH-s instrument using a convenience sample of 184 SSs and their family caregivers during IRF admission. Data collection from SSs and CGs at IRF admission was conducted to determine the quality of the items, internal consistency, reliability, construct validity, and criterion-related validity. We will describe the characteristics of CG responses on the PATH-s instrument during IRF in addition to correlation with other measures (general health, perceived stress, depression). This novel instrument can support a primary prevention strategy to identify gaps in preparedness for stroke survivor-caregiver dyads following the complex transition from IRF to home, with the long-range goal to mitigate the effects of suboptimal preparation and the associated adverse effects associated with this transition on the health of CGs and SSs. Once gaps are identified, care plans can be tailored to address gaps and better prepare caregivers for the transition home.

Introduction: Stroke patients, caregivers and providers are often frustrated by a lack of knowledge about community resources to optimize post-acute stroke care and recovery. To address this gap, an innovative model of care is being tested in the COMprehensive Post-Acute Stroke Services (COMPASS) Study, a PCORI-funded cluster-randomized pragmatic trial in North Carolina (NC). Hospital-based post-acute nurse care coordinators (PAC) and advanced practice providers partnered with community organizations to build 20 community resource networks (CRNs) providing transitional care to stroke survivors and caregivers. Community organizations include Area Agencies on Aging, Community Care of NC Community Pharmacy Enhanced Services Network, and NC Department of Health and Human Services. Methods: In May 2017, 337 members from 19 CRNs were surveyed to assess the utility of the CRNs and their impact on connecting survivors to community-based services. COMPASS team members, including PACs from all intervention hospitals and 36 community representatives from 17 CRNs responded (N=85, 25% response rate). Results: 80% of the PACs had contacted CRN members for help connecting patients to community-based services; 65% found the CRN very useful or useful. By working together hospital and community members felt their CRN was able to respond to stroke / TIA patients’ needs and problems: 30% to a great extent, 41% mostly, 9% sometimes, 11% a little, 10% not at all. In open-ended comments, streamlined referrals and partnerships with community pharmacists were identified as beneficial. Lack of transportation services in rural areas was a barrier. Some community service providers reported not being contacted again after the initial convening with the hospital. Conclusion: PACs were able to build local CRNs to integrate medical services with community-based services as a strategy for addressing functional and social determinants of health. The majority reported that working with their CRN helped them optimize patients’ recovery after stroke. Future analyses will assess patient utilization of recommended community services. A quality metric assessing hospital-community partnerships may help solidify significance of this important and often overlooked part of care.