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.

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.

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.

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.

Outcomes of a Stress Management and Resiliency Training (SMART) Program for Family Caregivers of Individuals With Advanced Head and Neck Cancer.

OBJECTIVES: To conduct a single-arm prospective pilot study examining the feasibility, acceptability, and preliminary effectiveness of a Stress Management and Resiliency Training (SMART) intervention among family caregivers (FCGs) of individuals with head and neck cancer (HNC). SAMPLE & SETTING: This study was conducted with 26 FCGs of individuals with HNC receiving chemotherapy in the medical oncology clinic at the Mayo Clinic Comprehensive Cancer Center. METHODS & VARIABLES: The SMART intervention consisted of in-person and online components. Measurements included feasibility, acceptability, self-compassion, resilience, perceived stress, anxiety, and mindfulness. RESULTS: Results support acceptability of the SMART program and provide recommendations to improve feasibility. Data indicate significant improvements in self-compassion (p = 0.03) and anxiety (p = 0.02), with positive trends for resilience, stress, and mindfulness. IMPLICATIONS FOR NURSING: This study warrants further research with larger, more diverse samples testing the efficacy of the program, its mechanism of action, and potential synergistic effects among individuals receiving oncology care, FCGs, and nurses.

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.

Perspectives of newly diagnosed advanced cancer patients receiving dignity therapy during cancer treatment.

PURPOSE: Dignity therapy is a psychosocial intervention that has been used primarily at the end of life to improve quality of life and other patient outcomes, but many individuals are unable to complete it due to health decline and death. The purpose of this study was to identify what individuals with advanced pancreatic or lung cancer with limited life expectancy, undergoing active cancer treatment describe during the dignity therapy intervention as important to them when not immediately facing end of life. METHODS: Twenty patients undergoing chemotherapy for advanced cancer participated in a dignity therapy intervention study. Initial interviews were analyzed using descriptive content analysis. RESULTS: Family provided the overall context and background for emerging themes of defining events, accomplishments, and God's plan, which led to lessons learned, and resulted in messages of hope. Interviews were often autobiographical in nature and contained much reminiscence, consistent with dignity therapy's intent. Few participants spoke about their cancer diagnoses during the interview. CONCLUSIONS: This study adds unique insight into the use of dignity therapy for those still receiving active cancer treatment, different from work by others in which it was offered only at end of life. As part of supportive care, clinicians need to validate the importance of family to those with advanced cancer and to provide opportunities for patients to share what they have learned throughout life and to impart messages of hope to those closest to them.

Feasibility and Acceptability of a Dignity Therapy/Life Plan Intervention for Patients With Advanced Cancer.

PURPOSE/OBJECTIVES: To determine the feasibility and acceptability of a dignity therapy/life plan intervention in the outpatient oncology setting.
. RESEARCH APPROACH: Pilot descriptive study.
. SETTING: Outpatient clinic in a tertiary oncology center. 
. PARTICIPANTS: 18 patients within 12 months after diagnosis undergoing treatment for advanced pancreatic cancer or non-small cell lung cancer.
. METHODOLOGIC APPROACH: Patients received dignity therapy, consisting of a focused life review/values clarification interview session and two subsequent sessions to produce a generativity document, which they can use later as they wish. Participants also wrote a life plan, in which they listed future hopes and dreams. Intervention feasibility and acceptability for patients and oncology clinician satisfaction were assessed.
. FINDINGS: Among the 18 patients completing the intervention, almost all felt it was worthwhile, would do it again, had their expectations met or exceeded, would recommend it to others, and said the timing was just right.
. INTERPRETATION: This psychosocial intervention was found to be feasible and acceptable to patients with cancer undergoing active treatment.
. IMPLICATIONS FOR NURSING: Nurses may be in an ideal position to offer a dignity therapy/life plan intervention to patients with advanced cancer during treatment.

I'm Still Me: Inspiration and Instruction from Individuals with Brain Cancer.

Individuals with brain cancer face many challenges, including threats to cognition, personality, and sensory and motor functioning. These can alter one's sense of identity and result in despair. Chaplain-led spiritual interviews were conducted with 19 patients with brain cancer as part of a larger spiritual legacy intervention called "Hear My Voice." The majority was female (58%), married (68%) and had aggressive/advanced tumors (63%). Participants were 22-68 years of age and expressed the following religious affiliations: Protestant (42%), Catholic (21%), Muslim (5%), and none (32%). Framework analysis was applied to reduce and understand the interview data. Primary codes were relationships with: God or the spiritual, others, and self. Brain cancer was reported to deepen and enrich patients' commitment to these relationships. Struggle and grief were also revealed. Results suggest the continued vitality, growth and generativity of these participants and provide insight for chaplains and others on the medical team.

Dying in the Hospital: Perspectives of family members.

BACKGROUND: Although most patients express a preference to die at home, many (over 30 percent) still die in hospital. This study's purpose was to explore the experience of hospital death from the perspective of patients' family members. METHODS: interviews were conducted with family members of patients who had died at hospitals affiliated with a large tertiary referral centre in the United States. Content analysis was used to analyze findings. FINDINGS: We interviewed 30 family members by phone. Themes were arranged by time frame: before death, time of death, and after death. CONCLUSION: Families do not interpret clinical cues leading up to death in the same way healthcare providers do; families need clear and direct explanations from providers. Clinicians should assess patient and family understandings of prognosis and communicate clearly and directly. Family members value being with their loved one at the time of death, and they value spending time with the body after death; this should be facilitated in clinical practice.

Caregivers' attitudes toward promoting exercise among patients with late-stage lung cancer.

BACKGROUND: The benefits of exercise, even at low intensity levels, in improving overall health, psychological well-being, and quality of life in patients with cancer have been well documented. However, few patients are involved in formal exercise programs, and little is known about the factors that motivate those who do participate. Although it has not been well assessed, it stands to reason that spousal and family support is an important determinant of cancer patients' adoption of, and adherence to, an exercise program. OBJECTIVE: To characterize attitudes among the family caregivers of patients with late-stage lung cancer about their role in promoting exercise. METHODS: 20 adult family caregivers of patients with stage IIIB or IV non-small-cell lung cancer were asked during semi-structured interviews about their views on the role of exercise in "fighting cancer," whether with respect to survival, health, psychological well-being, or overall quality of life; their ability to encourage patients to exercise; and their receptivity to getting exercise instructions from health care providers. FINDINGS: Family caregivers viewed exercise as important in fighting cancer. Past exercise patterns and lifestyle were important considerations, with some family caregivers who had not previously exercised considering household activities sufficient for promoting fitness. Family caregivers emphasized the importance of knowing the established boundaries of their relationships and respecting patients' autonomy. Caregivers generally thought that direction from health care providers to exercise would more likely result in meaningful behavioral change for patients. LIMITATIONS: The participants were recruited from a quaternary medical center and restricted to those with lung cancer, which may limit the generalizability of the findings to other settings or cancers. CONCLUSIONS AND INTERPRETATION: Family caregivers believe that exercise is important for patients, but feel constrained in their willingness and ability to promote exercise behaviors because of the established boundaries of their relationships. They have mixed opinions about the utility of exercise promotion by health care providers. Family caregivers are ambivalent about promoting exercise for patients with advanced cancer. Nonjudgmental assessment of patients' past exercise preferences and established relationship boundaries should inform clinical judgment about the utility of engaging family caregivers in the promotion of exercise.

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.

Preparedness planning before mechanical circulatory support: a "how-to" guide for palliative medicine clinicians.

The role of palliative medicine in the care of patients with advanced heart failure, including those who receive mechanical circulatory support, has grown dramatically in the last decade. Previous literature has suggested that palliative medicine providers are well poised to assist cardiologists, cardiothoracic surgeons, and the multidisciplinary cardiovascular team with promotion of informed consent and initial and iterative discussions regarding goals of care. Although preparedness planning has been described previously, the actual methods that can be used to complete a preparedness plan have not been well defined. Herein, we outline several key aspects of this approach and detail strategies for engaging patients who are receiving mechanical circulatory support in preparedness planning.

Insights into the reluctance of patients with late-stage cancer to adopt exercise as a means to reduce their symptoms and improve their function.

CONTEXT: Exercise reduces cancer-related disablement and adverse symptoms, yet patients' attitudes toward exercise remain largely unexamined. OBJECTIVES: This qualitative study sought to characterize the beliefs of patients with late-stage disease regarding exercise, its relationship to their symptoms, and their clinicians' roles in providing related counseling. METHODS: Semistructured interviews with 20 adults (half male and half aged 65 years or older) with Stage IIIB or IV nonsmall cell lung cancer were qualitatively analyzed. Participants were questioned about their levels of activity, the influence of their symptoms on their activities, perceived barriers and facilitators for exercise, and exercise-related instructions received from their professional caregivers. RESULTS: Participants overwhelmingly cited usual daily activities as their source of "exercise." Symptoms, particularly treatment-related, discouraged participation, with fear of harm being a significant concern only among younger women. Exercise was recognized as important for physical and mental well-being but seldom as a means to mitigate symptoms. Weather, recalled levels of premorbid fitness, and exercise participation modulated current exercise behaviors. Although respondents preferred to receive guidance from their oncologist, none reported receiving more than general encouragement to "stay active." A lack of direction was typically accepted as a sanction of their current activity levels. Participants appeared less receptive to guidance from ancillary health professionals. CONCLUSION: Effective use of exercise and activity modification to ameliorate cancer-related symptoms appears to require a linkage to a patient's usual and past activities, proactive negotiation of potential barriers, education regarding symptoms and exercise, and the positive support of their oncologist.

Learning and support preferences of adult patients with cancer at a comprehensive cancer center.

PURPOSE/OBJECTIVES: To identify content items for an inclusive education curriculum for adult patients with cancer, as well as describe their learning and support preferences, determine the level of information provided to them, and assess the patients' interest in potential new services. DESIGN: Exploratory, descriptive survey research. SETTING: A National Cancer Institute-designated Comprehensive Cancer Center. SAMPLE: All consenting adult patients with cancer who had appointments in the outpatient care setting during a two-week period (N = 1,310). METHODS: A 3-phase study identified core components of an inclusive educational curriculum, conducted structured interviews of patients with cancer, and validated findings in a selected sample. FINDINGS: The surveys were completed and returned by 48% (n = 625) of the patients. The most favored method for learning about all cancer topics was discussions with physicians (66%). Other preferred methods included brochures or booklets provided by physicians or nurses (33%), discussions with nurses (34%), self-selecting print media from information displays (20%), and talking with other patients with cancer (14%). Statistically significant differences in learning preferences were found among subgroups defined by age, gender, and education. CONCLUSIONS: Patients preferred interactive, interpersonal communication with physicians or nurses. In addition, the prevailing method of education delivery for patients with cancer was providing print materials that support and enhance knowledge shared in the patient-healthcare team communication. IMPLICATIONS FOR NURSING: This study confirms the importance of the learning and support preferences of patients with cancer. To implement a successful education program for their patients, nurses must be aware of patients' preferences for learning new information. Time must be set aside for one-on-one communication with patients, and print materials must be easily accessible to healthcare providers to support the patient-education process.