Gustavson, Allison M.

Abstract Objectives Family caregivers (FCGs) may experience numerous psychosocial and practical challenges with interpersonal relationships, mental health, and finances both before and after their care recipient (CR) dies. The specific challenges affecting rural FCGs who often have limited access to palliative care services, transitional care, and other community resources are not well understood. The purpose of this paper is to quantify the challenges rural FCGs experienced immediately before the death of a CR and continuing into the bereavement period. Methods A secondary analysis of data from a randomized controlled trial was conducted. The 8-week intervention included video visits between a palliative care research nurse and FCGs caring for someone with a life-limiting illness. Data were from structured interviews during nurse visits with FCGs in the intervention arm whose CR died during the intervention period. Results Ninety (41.8%) of the 215 FCGs experienced the death of their CR. The majority of FCGs were female (58.9%), White (97.5%), spouses or partners (55.6%) and lived with the CR (66.7%). Most FCGs (84%) continued with intervention visits by the study nurse after the CR’s death. Visits resumed on average 7.2 days post-death. The majority of FCGs experienced challenges with grief/coping skills (56%) and interpersonal relationships/support systems (52%) both pre- and post-death of the CR. FCGs also experienced practical challenges with income/finance, housing, and communication with community resources both pre-and post-death. Significance of results Bereavement support should extend beyond a focus on grief to include practical challenges experienced by FCGs. Because challenges experienced in the bereavement period often begin before a CR’s death, there is benefit in continuity of FCG support provided by a known clinician from pre- to post-death. When given an option, many rural FCGs are open to bereavement support as early as a week after the death of a CR.

Background: Patients with severe and life-limiting illnesses transitioning out of the hospital often rely on family caregivers (FCGs) to manage communication with health care teams during hospitalizations and outpatient care. However, FCGs infrequently receive adequate training or support to prepare for these responsibilities. Effective communication between FCGs and health care teams is critical for preparing FCGs and reducing risks for poor outcomes. This study tested an eight-week intervention to improve FCG preparedness and communication practices during transitions out of the hospital. Methods: Conducted from 2018 to 2022, this randomized controlled trial included adult FCGs in rural areas in the United States (Minnesota, Wisconsin, and Iowa). FCGs caring for adults who received inpatient palliative care and were transitioning out of the hospital were eligible. The intervention group received teaching, guidance, and counseling from a palliative care nurse interventionist via video visits before and for eight weeks after discharge. The control group received monthly phone calls but no intervention. Outcomes included changes in FCG-reported preparedness for caregiving and communication with health care teams. Results: Of the 429 consented, 367 (183 intervention and 184 control participants) initiated the intervention; 164 had complete preparedness data, and 161 had complete communication data at baseline and eight weeks. In unadjusted analyses, the intervention group showed statistically significant improvements in preparedness but not communication practices. After adjusting for factors associated with care transitions, the findings persisted. Conclusion: Partnering rural FCGs with palliative care nurses via video can improve caregiver preparedness during care transitions. Improving communication practices may need more targeted strategies.

ABSTRACTObjectiveTo assess how patient and caregiver factors influence caregiver readiness for hospital discharge in palliative care patients.Study Setting and DesignThis transitional care study uses cross‐sectional data from a randomized controlled trial conducted from 2018 to 2023 testing an intervention for caregivers of hospitalized adult patients with a serious or life‐limiting illness who received a palliative care consult prior to transitioning out of the hospital.Data Sources and Analytical SampleCaregiver readiness was measured with the Family Readiness for Hospital Discharge Scale (n = 231). Caregiver demographic, intra‐ and interpersonal factors were self‐reported. Patient demographic, comorbidity score, and risk score for complicated discharge planning were extracted from electronic health records. Stepwise regression models estimated variance explained (r2) in caregiver readiness for patient hospital discharge.Principal FindingsPatient demographics and complexity were not statistically associated with caregiver readiness for discharge. Caregiver depressive symptoms, poor caregiver‐patient relationship quality, and fewer hours spent caregiving prior to hospitalization explained 29% of the variance in caregiver readiness.ConclusionsReliance on patient data may not be sufficient for explaining caregiver readiness for discharge. Assessing caregiver factors may be a better alternative for identifying caregivers at risk for low discharge readiness and those in need of additional support.Trial Registration: ClinicalTrials.gov on November 13, 2017, (No. NCT03339271)

Abstract Few studies have reliable estimates on costs of informal care following hospitalization, including health care use and out-of-pocket costs for family caregivers (FCGs) and their care recipients (CR). This presentation discusses results from a Transitional Palliative Care (TPC) intervention on healthcare use and out-of-pocket spending for both FCGs and CRs. The study used data from the Technology-Enhanced TPC study, a trial comparing the TPC intervention to support FCGs of seriously ill CRs to an attention control condition. TPC FCGs received teaching, guidance, and counseling via video calls for 8 weeks following CR hospital discharge. After discharge, a research assistant called FCGs once a month for up to 6 months or CR death to collect 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 (IRR) were estimated using negative binomial regressions. The study included 282 FCG-CR dyads across 3 US states. TPC reduced nights in the hospital for CR (IRR = 0.75; 95% CI = 0.56 – 0. 99). Total out-of-pocket spending was not significantly different for TPC versus control; however, TPC dyads reported lower lodging costs (IRR = 0.71; 95% CI = 0.56-0.89). Across groups, mean out-of-pocket spending for dyads was $1401.85, with healthcare payments contributing $1048.58 and transportation expenses contributing $136.79. This study contributes to evidence that palliative care interventions reduce unnecessary hospitalization for seriously ill patients, yet the financial costs to caregivers remain high.

Abstract Recruiting family caregivers to participate in research, especially caregivers of people with severe or life limiting illnesses transitioning from hospital to home, is challenging. Traditional approaches for recruitment, including recruitment done on site at clinics or hospitals, became impracticable during the COVID-19 pandemic, leading to shifts toward virtual or remote recruitment and consent. In this presentation, Dr. Gustavson will compare the success of these two methodological approaches, in-person and remote recruitment and consent, used in the Technology-Enhanced Transitional Palliative Care (TPC) study. She found that the rate of recruitment and consent done in-person was 28% and the rate of remote recruitment and consent was 23%. Those recruited and consented remotely were more likely to be younger, white, have greater than high school education, and were children of or had another non-spousal relationship to the care recipient. She discusses the limitations and benefits of each recruitment modality, including the impact on representativeness of the study sample.

Abstract In the research literature and amongst grant reviewers, there are persistent questions about whether internet connectivity challenges, especially in rural populations, will limit the potential for virtual or decentralized clinical trials to improve participation of underrepresented groups. In clinical practice, e-health and telehealth advancements have been touted as potential models of care to address health disparities associated with access to care, but without reliable internet connectivity, these disparities may perpetuate or even widen. In this presentation Dr. Holland examines the prevalence of connectivity problems during the Technology-Enhanced Transitional Palliative Care (TPC) study, a virtual clinical trial across three Midwestern states, and provides guidance on the challenges faced. Data are from structured notes from nurse interventionists who documented any connectivity issues in the study’s electronic health record. Of the 1003 visits reviewed, only 11% of visits (115/1003) contained a documented problem with internet connectivity. None of the participants withdrew from the trial due to problems with their internet connections. The findings support the effective use of virtual visits in research involving participants living in rural locations. Virtual randomized controlled trials provide a strategy that enables participation for rural individuals who may not otherwise have access to clinical trials conducted in-person in urban settings. Utilizing internet access to connect with and support people who live in rural areas is critically needed to advance clinical research.

Abstract In this presentation, Dr. Griffin will describe the Technology-Enhanced Transitional Palliative Care (TPC) study, a randomized controlled trial testing the efficacy and cost-effectiveness of an intervention to address FCGs’ unmet needs in order to improve their health and well-being. Nurse interventionists use video visits to teach, guide and counsel FCGs in rural areas caring for someone receiving palliative care and transitioning form hospital to home. In addition to providing background on the importance of addressing unmet family caregiver needs during care transitions for patients receiving palliative care, she will describe the study design, sample, intervention and control group procedures, including the use of video visits, and outcomes assessed. This presentation will provide necessary context for the remaining presentations.

Abstract 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.

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.

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.