Improving Transitions in Care for Patients and Family Caregivers Living in Rural and Underserved Areas: The Caregiver Advise, Record, Enable (CARE) Act.

In this Perspective, we contend bold action is needed to improve transitions from hospitals to home for aging patients and their family caregivers living in rural and underserved areas. The Caregiver Advise, Record, Enable (CARE) Act, passed in over 40 US states, is intended to provide family caregivers of hospitalized patients with the knowledge and skills needed for safe and efficient transitions. It has broken important ground for family caregivers who assist with transitions in patient care. It may fall short, however, in addressing the unique needs of family caregivers living in rural and underserved areas. We contend that to realize the intended safety, cost, and care quality benefits of the CARE Act, especially for those living in rural and underserved areas, states need to expand the Act's scope. We provide three recommendations: 1) modify hospital information systems to support the care provided by family caregivers; 2) require assessments of family caregivers that reflect the challenges of family caregiving in rural and underserved areas; and 3) identify local resources to improve discharge planning. We describe the rationale for each recommendation and the potential ways that an expanded CARE Act could reduce the risks associated with transitions in care for aging patients.

Key Points:1. Recent state laws aim to support family caregivers of hospitalized patients.2. These laws do not account for the unique needs of rural caregivers.3. Expanding laws to address rural caregiver needs may improve patient outcomes.

Deriving and validating a brief measure of treatment burden to assess person-centered healthcare quality in primary care: a multi-method study.

BACKGROUND: In primary care there is a need for more quality measures of person-centered outcomes, especially ones applicable to patients with multiple chronic conditions (MCCs). The aim of this study was to derive and validate a short-form version of the Patient Experience with Treatment and Self-management (PETS), an established measure of treatment burden, to help fill the gap in quality measurement. METHODS: Patient interviews (30) and provider surveys (30) were used to winnow items from the PETS (60 items) to a subset targeting person-centered care quality. Results were reviewed by a panel of healthcare providers and health-services researchers who finalized a pilot version. The Brief PETS was tested in surveys of 200 clinic and 200 community-dwelling MCC patients. Surveys containing the Brief PETS and additional measures (e.g., health status, medication adherence, quality of care, demographics) were administered at baseline and follow-up. Correlations and t-tests were used to assess validity, including responsiveness to change of the Brief PETS. Effect sizes (ES) were calculated on mean differences. RESULTS: Winnowing and panel review resulted in a 34-item Brief PETS pilot measure that was tested in the combined sample of 400 (mean age = 57.9 years, 50% female, 48% white, median number of conditions = 5). Reliability of most scales was acceptable (alpha > 0.70). Brief PETS scores were associated with age, income, health status, and quality of chronic illness care at baseline (P < .05; rho magnitude range: 0.16-0.66). Furthermore, Brief PETS scores differentiated groups based on marital and education status, presence/absence of a self-management routine, and optimal/suboptimal medication adherence (P < .05; ES range: 0.25-1.00). Declines in patient-reported physical or mental health status over time were associated with worsening PETS burden scores, while improvements were associated with improving PETS burden scores (P < .05; ES range: 0.04-0.44). Among clinic patients, 91% were willing to complete the Brief PETS as part of their clinic visits. CONCLUSIONS: The Brief PETS (final version: 32 items) is a reliable and valid tool for assessing person-centered care quality related to treatment burden. It holds promise as a means of giving voice to patient concerns about the complexity of disease management.

Identifying and addressing gaps in the implementation of a community care team for care of Patients with multiple chronic conditions.

BACKGROUND: Patients with multiple chronic conditions represent a growing segment for healthcare. The Chronic Care Model (CCM) supports leveraging community programs to support patients and their caregivers overwhelmed by their treatment plans, but this component has lagged behind the adoption of other model elements. Community Care Teams (CCTs) leverage partnerships between healthcare delivery systems and existing community programs to address this deficiency. There remains a gap in moving CCTs from pilot phase to sustainable full-scale programs. Therefore, the purpose of this study was to identify the cognitive and structural needs of clinicians, social workers, and nurse care coordinators to effectively refer appropriate patients to the CCT and the value these stakeholders derived from referring to and receiving feedback from the CCT. We then sought to translate this knowledge into an implementation toolkit to bridge implementation gaps. METHODS: Our research process was guided by the Assess, Innovate, Develop, Engage, and Devolve (AIDED) implementation science framework. During the Assess process we conducted chart reviews, interviews, and observations and in Innovate and Develop phases, we worked with stakeholders to develop an implementation toolkit. The Engage and Devolve phases disseminate the toolkit through social networks of clinical champions and are ongoing. RESULTS: We completed 14 chart reviews, 11 interviews, and 2 observations. From these, facilitators and barriers to CCT referrals and patient re-integration into primary care were identified. These insights informed the development of a toolkit with seven components to address implementation gaps identified by the researchers and stakeholders. CONCLUSION: We identified implementation gaps to sustaining the CCT program, a community-healthcare partnership, and used this information to build an implementation toolkit. We established liaisons with clinical champions to diffuse this information. The AIDED Model, not previously used in high-income countries' primary care settings, proved adaptable and useful.

Describing pediatric hospital discharge planning care processes using the Omaha System.

PURPOSE: Although discharge planning (DP) is recognized as a critical component of hospital care, national initiatives have focused on older adults, with limited focus on pediatric patients. We aimed to describe patient problems and targeted interventions as documented by social workers or DP nurses providing specialized DP services in a children's hospital. METHODS: Text from 67 clinical notes for 28 patients was mapped to a standardized terminology (Omaha System). Data were deductively analyzed. RESULTS: A total of 517 phrases were mapped. Eleven of the 42 Omaha System problems were identified. The most frequent problem was health care supervision (297/517; 57.4%). Three Omaha System intervention categories were used (teaching, guidance, and counseling; case management; and surveillance). Intervention targets are varied by role. CONCLUSION: The findings provide a rich description of the nature of DP for complex pediatric patients and increase our understanding of the work of DP staff and the influence of the DP practice model.

Leadership Strategies, An Interdisciplinary Team, and Ongoing Nurse Feedback: Ingredients For a Successful BCMA Project.

Barcode medication administration (BCMA) implementation represents a change in a complex process requiring significant modifications in the work of nurses. Nurses' voices are critical for successfully implementing BCMA technology to support this change in nursing practice. Feedback from nurses who administered medications was critical to selecting and refining a BCMA system that supported their practice needs. Feedback regarding implementation status was critical for keeping key stakeholders across the institution informed of the progress and initial impact of the implementation. Nursing leadership engagement throughout the process supported the successful adoption of new workflow processes and technology.

Key factors in patient-centered care coordination in ambulatory care: nurse care coordinators' perspectives.

BACKGROUND: Care coordination within Health Care Homes (HCHs) is an evolving registered nurse role. The purpose of this study was to identify factors influencing nurse care coordination. AIMS: The aims are to 1) describe the characteristics of patients perceived by nurse care coordinators (NCCs) to benefit from care coordination and to 2) describe interventions judged by NCCs to be most effective in caring for patients with complex chronic care needs. METHODS: This study was an analysis of existing data using a qualitative descriptive design. Experienced NCCs from various practice settings participated in a focus group. Data were analyzed using content analysis. RESULTS: Findings indicate the importance of the cumulative impact of complex health problems, limited social support, culture and language on patients needing care coordination. Effective interventions are focused on providing holistic, relationship-based care. CONCLUSION: The identification of contextual factors juxtaposed to complex chronic health conditions holds promise as a powerful indicator of individuals needing targeted, individualized interventions.

Feasibility of interactive technology for symptom monitoring in patients with fibromyalgia.

Use of health information technology (IT) integrated with clinical services has the potential to empower self-management and decrease health care utilization for chronic disorders such as fibromyalgia (FM). However, the appropriate methodology that systematically facilitates the integration of health IT with clinical services between patients and nurses partnering to manage FM is unclear. The purpose of this study was to determine the feasibility of technology-enhanced monitoring that engages FM patients using a mobile device. A quantitative and qualitative descriptive design was used in a convenience sample of 20 FM patients. Patients used a mobile monitoring device for one week; nurses responded to patient e-mailed symptom reports on a daily basis. Analysis was primarily descriptive-percent, frequencies, and means for individual questionnaire items and subscales were calculated. For qualitative data, a 1 hour focus group was audio-recorded, transcribed verbatim, and then analyzed using content analysis. All participants used a mobile phone in their daily lives; half used a smart phone. Participants were interested in using a smart phone to monitor their health and to communicate with health care providers. Participants used the study mobile device an average of 5.2 days out of the 7 day study period. Most participants (80%) reported that monitoring symptoms using the device was easy to do. Sixty-five percent felt that using the device helped them to promptly address their symptoms. Results from this study indicated that health IT integrated with clinical services is feasible to monitor FM symptoms and to communicate with the care team.

The feasibility of using technology to enhance the transition of palliative care for rural patients.

Palliative care services for patients with life-limiting conditions enhance their quality of life. Most palliative care services, however, are located in hospitals with limited transitional care for patients who live in distant locations. The long-term goal of this program of research is to use existing technology for virtual visits to provide transitional care for patients initially hospitalized in an urban setting by a nurse practitioner located closer to patients' homes in distant, rural settings. The purpose of this proof-of-concept study was to determine the resources needed to use the system (efficiency) and the quality of the audio and visual components (effectiveness) to conduct virtual visits between a clinician at an academic center and community-dwelling adults living in rural locations. Guided by the Technology Acceptance Model, a mixed-methods field design was used. Because of the burden of testing technology with patients with life-limiting conditions, the sample included eight healthy adults. Participant satisfaction and perceptions of the ease of using the technology were also measured. Virtual visits were conducted using a 3G-enabled Apple iPad, cellular phone data service, and a Web-based video conference service. Participants and clinicians perceived the technology as easy to use. Observations revealed the importance of the visual cues provided by the technology to enhance communication, engagement, and satisfaction. Findings from this study will inform a subsequent study of technology-enhanced transitional care with palliative care patients.

Implementation Costs of Technology-Enhanced Transitional Palliative Care for Rural Caregivers.

OBJECTIVES: Compared to urban family caregivers (FCG), rural FCG experience greater burdens accessing coordinated care for their loved ones during and after hospitalization. The impact of technology-enhanced transitional palliative care (TPC) on caregiver outcomes is currently being evaluated in a randomized control trial. This study evaluates resource use and health system costs of this FCG-focused TPC intervention and potential Medicare reimbursement mechanisms. METHODS: Rural caregivers of hospitalized patients were randomized into an 8-week intervention consisting of video visits conducted by a registered nurse certified in palliative care, supplemented with phone calls and texts (n = 215), or attentional control. Labor costs were estimated for a registered nurse and compared to scenario analyses using a nurse practitioner or social worker wages. Medicare reimbursement scenarios included Transitional Care Management (TCM) and Chronic Care Management (CCM) CPT codes. RESULTS: In the base case, TPC cost was $395 per FCG facilitated by a registered nurse, compared to $337 and $585 if facilitated by a social worker or nurse practitioner, respectively. Mean Medicare reimbursement in the TCM-only scenario was $322 and $260 for high or moderate complexity patients, respectively. Reimbursement in the CCM only scenario was $348 and $274 for complex and non-complex patients, respectively. Reimbursement in the TCM+CCM scenario was $496 and $397, for high/complex and moderate/non-complex patients, respectively. CONCLUSION: TPC is a feasible, low cost and sustainable strategy to enhance FCG support in rural areas. Potential reimbursement mechanisms are available to offset the costs to the health system for providing transitional palliative care to caregivers of patients recently hospitalized.

Caregiver recruitment strategies for interventions designed to optimize transitions from hospital to home: lessons from a randomized trial.

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

Healthcare use and out-of-pocket costs for rural family caregivers and care recipients in a randomized controlled trial.

BACKGROUND: Rural family caregivers (FCGs) in the United States often experience high economic costs. This randomized controlled trial compared a transitional palliative care intervention (TPC) to support FCGs of seriously ill care recipients (CRs) to an attention control condition. We evaluated the TPC's effect on healthcare use and out-of-pocket spending for both FCGs and CRs. METHODS: TPC FCGs received teaching, guidance, and counseling via video calls for 8 weeks following CR discharge from the hospital. After discharge, a research assistant called all FCGs once a month for up to 6 months or CR death to collect self-reported healthcare utilization (e.g., outpatient, emergency department, and hospital), out-of-pocket healthcare spending (e.g., deductibles and coinsurance), and health-related travel costs (e.g., transportation, lodging, food) for FCGs and CRs. Incidence rate ratios (IRRs) were estimated using negative binomial regressions. RESULTS: The study included 282 FCG-CR dyads across three U.S. states. Follow-up over the 6-month period was shortened by high CR mortality rates across both arms (29%), but was similar across arms. TPC reduced nights in the hospital for CR (IRR = 0.75; 95% confidence interval [CI] = 0.56-0. 99). Total out-of-pocket spending was not significantly different for TPC versus control. Across both groups, mean out-of-pocket spending for dyads was $1401.85, with healthcare payments contributing $1048.58 and transportation expenses contributing $136.79. TPC dyads reported lower lodging costs (IRR = 0.71; 95% CI = 0.56-0.89). CONCLUSIONS: This study contributes to evidence that palliative care interventions reduce the number of nights in the hospital for seriously ill patients. Yet, overall rural FCGs and seriously ill CRs experience substantial out-of-pocket economic costs in the 6 months following hospitalization. Transitional care intervention design should consider impacts on patient and caregiver spending. CLINICALTRIALS: gov # is NCT03339271.

Developing a community care team: lessons learned from the community connections program, a health care home-community care team partnership.

This article describes the development of the Community Connections Program (CCP), a community care team, within a health care home (HCH), as a short-term, intensive, team-based service planning and coordination program for older adults with multiple chronic health conditions. Three proven approaches were combined to support patient's self-management, nurse care coordination, the Wraparound process, and use of community services. Particzpants'responses to the CCP demonstrated the success of the community care team in connecting patients and nurse care coordinators (NCCs) with community service providers, thus supplying primary care providers with important information regarding the development of a community care team to support patient-centered care within a HCH.

A Methodological Approach for Documenting Multi-Component Interventions Targeting Family Caregivers.

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

A technology-enhanced model of care for transitional palliative care versus attention control for adult family caregivers in rural or medically underserved areas: study protocol for a randomized controlled trial.

BACKGROUND: Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care. Those living in rural areas have even fewer resources to meet their self-care and caregiving needs. The purpose of this study is to test the efficacy and cost-effectiveness of an intervention to improve FCGs' health and well-being. The intervention uses video visits to teach, guide, and counsel FCGs in rural areas during hospital-to-home transitions. The intervention is based on evidence of transitional and palliative care principles, which are individualized to improve continuity of care, provide caregiver support, enhance knowledge and skills, and attend to caregivers' health needs. It aims to test whether usual care practices are similar to this technology-enhanced intervention in (1) caregiving skills (e.g., caregiving preparedness, communication with clinicians, and satisfaction with care), (2) FCG health outcomes (e.g., quality of life, burden, coping skills, depression), and (3) cost. We describe the rationale for targeting rural caregivers, the methods for the study and intervention, and the analysis plan to test the intervention's effect. METHODS: The study uses a randomized controlled trial design, with FCGs assigned to the control condition or the caregiver intervention by computer-generated lists. The intervention period continues for 8 weeks after care recipients are discharged from the hospital. Data are collected at baseline, 2 weeks, 8 weeks, and 6 months. Time and monetary costs from a societal perspective are captured monthly. DISCUSSION: This study addresses 2 independent yet interrelated health care foci-transitional care and palliative care-by testing an intervention to extend palliative care practice and improve transition management for caregivers of seriously ill patients in rural areas. The comprehensive cost assessment will quantify the commitment and financial burden of FCGs. TRIAL REGISTRATION: ClinicalTrials.gov NCT03339271 . Registered on 13 November 2017. Protocol version: 11.

Fostering Cross-Sector Partnerships: Lessons Learned From a Community Care Team.

PURPOSE/OBJECTIVES: The purpose of this study was to describe lessons learned during the development and implementation of a community care team (CCT) and the applicability of this model in movement toward cross-sector team-based care coordination. PRIMARY PRACTICE SETTING: Primary care. FINDINGS/CONCLUSIONS: Cross-sector CCTs composed of primary care and community service providers are a care coordination approach that attends to the individual's social determinants of health, enhances the individual's capacity to manage treatment and self-care demands of multiple chronic health conditions, improves the care experience, and impacts well-being. A collaborative CCT decreased the use of acute care services and the costs of care. IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: As reported in this study, use of interprofessional collaborative health care teams in planning care and services for individuals is a standard of practice for case management. Cross-sector partnerships provide the opportunity to maximize the contributions of health care and community service providers that address both chronic health conditions and social determinants of health, minimize fragmentation and costs of care, and promote collaborative care coordination. Community care teams offer sophisticated care coordination not otherwise available to medically complex high-need individuals who require assistance in navigating the medical and financial systems that exist in health care today.

Care Coordination From a Strengths Perspective: A Practice-Based Evidence Evaluation of Evidence-Based Practice.

BACKGROUND AND PURPOSE: It is critical to accurately represent strengths interventions to improve data and enable intervention effectiveness research from a strengths perspective. However, it is challenging to understand strengths interventions from the multiple perspectives of computerized knowledge representation, evidence-based practice guidelines, and practice-based evidence narratives. Intervention phrases abstracted from nurse care coordinator practice narratives described strengths interventions with community-dwelling elders. This project aims were to (a) compare nurse care coordinator use of evidence-based interventions as described in the two guidelines (what to do and how to do it), (b) analyze nurse care coordinator intervention tailoring (individualized care), and (c) evaluate the usefulness of the Omaha System for comparison of narrative phrases to evidence-based guidelines. METHODS: Phrases from expert nurse care coordinators were mapped to the Omaha System for comparison with the guidelines interventions and were analyzed using descriptive statistics. Venn diagrams were used to visually depict intervention overlap between the guidelines and the phrases. RESULTS: Empirical evaluation of 66 intervention phrases mapped to 14 problems using 3 category terms and 19 target terms showed alignment between guidelines and the phrases, with the most overlap across two guidelines and the phrases in categories, and the most diversity in care descriptions. CONCLUSION: These findings demonstrate the value in having both standardized guidelines and expert clinicians who see the whole person and can synthesize and apply guidelines in tailored ways. There is potential to create a feedback loop between practice-based evidence and evidence-based practice by expanding this approach to use of practice-generated Omaha System data as practice-based evidence. Further research is needed to refine and advance the use of these methods with additional practices and guidelines.

Predicting Use of Nurse Care Coordination by Older Adults With Chronic Conditions.

To be effective, nurse care coordination must be targeted at individuals who will use the service. The purpose of this study was to identify variables that predicted use of care coordination by primary care patients. Data on the potential predictor variables were obtained from patient interviews, the electronic health record, and an administrative database of 178 adults eligible for care coordination. Use of care coordination was obtained from an administrative database. A multivariable logistic regression model was developed using a bootstrap sampling approach. Variables predicting use of care coordination were dependence in both activities of daily living (ADL) and instrumental activities of daily living (IADL; odds ratio [OR] = 5.30, p = .002), independent for ADL but dependent for IADL (OR = 2.68, p = .01), and number of prescription medications (OR = 1.12, p = .002). Consideration of these variables may improve identification of patients to target for care coordination.

The Gap in Big Data: Getting to Wellbeing, Strengths, and a Whole-person Perspective.

BACKGROUND: Electronic health records (EHRs) provide a clinical view of patient health. EHR data are becoming available in large data sets and enabling research that will transform the landscape of healthcare research. Methods are needed to incorporate wellbeing dimensions and strengths in large data sets. The purpose of this study was to examine the potential alignment of the Wellbeing Model with a clinical interface terminology standard, the Omaha System, for documenting wellbeing assessments. OBJECTIVE: To map the Omaha System and Wellbeing Model for use in a clinical EHR wellbeing assessment and to evaluate the feasibility of describing strengths and needs of seniors generated through this assessment. METHODS: The Wellbeing Model and Omaha System were mapped using concept mapping techniques. Based on this mapping, a wellbeing assessment was developed and implemented within a clinical EHR. Strengths indicators and signs/symptoms data for 5 seniors living in a residential community were abstracted from wellbeing assessments and analyzed using standard descriptive statistics and pattern visualization techniques. RESULTS: Initial mapping agreement was 93.5%, with differences resolved by consensus. Wellbeing data analysis showed seniors had an average of 34.8 (range=22-49) strengths indicators for 22.8 concepts. They had an average of 6.4 (range=4-8) signs/symptoms for an average of 3.2 (range=2-5) concepts. The ratio of strengths indicators to signs/symptoms was 6:1 (range 2.8-9.6). Problem concepts with more signs/symptoms had fewer strengths. CONCLUSION: Together, the Wellbeing Model and the Omaha System have potential to enable a whole-person perspective and enhance the potential for a wellbeing perspective in big data research in healthcare.

Exploring indicators of use of costly health services in community-dwelling adults with multiple chronic conditions.

UNLABELLED: Although experts recognize that including patient functional and social variables would improve models predicting risk of using costly health services, these self-reported variables are not widely used. PURPOSE OF STUDY: Explore differences in predisposing characteristics, enabling resources, patient-perceived need for care and professionally evaluated need for care variables between patients receiving primary care within a Health Care Home who did and did not use hospital, emergency department, or skilled nursing facility services in a 3-month period of time. PRIMARY PRACTICE SETTING(S): Primary care. METHODOLOGY AND SAMPLE: Guided by the Behavioral Model of Health Service Use, a secondary analysis was conducted on data from a study that included 57 community-dwelling older adults receiving primary care in a Health Care Home. Because of the exploratory nature of the study, group differences in the use of costly care services were compared at the 0.10 level of statistical significance. RESULTS: Seventeen patients (29.8%) experienced costly care services. The greatest number of differences in variables between groups was in the category of patient-perceived need for care (functional impairments, dependencies, difficulties). IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: Targeting case management services using evidence-based decision support tools such as prediction models enhances the opportunity to maximize outcomes and minimize waste of resources. Patient-perceived and clinician-evaluated need for care may need to be combined to fully describe the contextual needs that drive the use of health services. Difficulty with Activities with Daily Living and Instrumental Activities of Daily Living should be considered in future studies as candidate predictor variables for need for case management services in primary care settings.