Interventions for Family Caregivers of Patients Receiving Palliative/Hospice Care at Home: A Scoping Review.

There is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Intervention studies that met the inclusion criteria and that were published up until October 2022 were obtained from the following databases: Ovid MEDLINE, Ovid EMBASE, CINAHL (EBSCO), and The Cochrane Library (Wiley). We analyzed 76 studies describing 55 unique interventions that took place in 14 countries. Interventions were largely delivered by nurses (n = 18, 24%), followed by an interdisciplinary team (n = 16, 21%), a health care provider (n = 10, 13%), research staff (n = 10, 13%), social worker (n = 5, 7%), and others (n = 11, 15%). Six interventions (8%) were self-administered. The most measured outcome was caregiver quality of life (n = 20, 26%), followed by anxiety (n = 18, 24%) and burden (n = 15, 20%). Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies (n = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings.

Feasibility, Acceptability, and Preliminary Efficacy of a Positive Affect Skills Intervention for Adults With Fibromyalgia.

Background and Objectives: To examine the feasibility, acceptability, and preliminary efficacy of a positive affect skills intervention for middle-aged and older adults with fibromyalgia syndrome (FMS). Research Design and Methods: Ninety-five participants with FMS aged 50 and older (94% female) were randomized to 1 of 2 conditions: (a) Lessons in Affect Regulation to Keep Stress and Pain UndeR control (LARKSPUR; n = 49) or (b) emotion reporting/control (n = 46). LARKSPUR included 5 weeks of skill training that targeted 8 skills to help foster positive affect, including (a) noticing positive events, (b) savoring positive events, (c) identifying personal strengths, (d) behavioral activation to set and work toward attainable goals, (e) mindfulness, (f) positive reappraisal, (g) gratitude, and (h) acts of kindness. Outcome data were collected via online surveys at baseline, postintervention, and 1-month follow-up. Results: Completion rates (88%) and satisfaction ratings (10-point scale) were high (LARKSPUR: M = 9.14, standard deviation (SD) = 1.49; control: M = 8.59, SD = 1.97). Improvements were greater in LARKSPUR participants compared with control participants on measures of positive affect (Cohen's d = 0.19 [0.15, 0.24]), negative affect (Cohen's d = -0.07 [-0.11, -0.02]), and pain catastrophizing (Cohen's d = -0.14 [-0.23, -0.05]). Improvements in positive affect (Cohen's d = 0.17 [0.13, 0.22]) and negative affect (Cohen's d = -0.11 [-0.15, -0.06]) were maintained at 1-month follow-up. Dose-response analyses indicated that intervention engagement significantly predicted pre-to-post and post-to-follow-up reductions in pain catastrophizing. Discussion and Implications: The current preliminary findings add to existing literature and highlight the specific potential of internet-delivered positive affect skills programs for adults with FMS. Clinical Trial Registration: NCT04869345.

Palliative care for case managers: Building capacity to extend community-based palliative care to underserved older adults.

Palliative care has demonstrated effectiveness in alleviating the biological, emotional, social, and spiritual symptoms that accompany serious illness, and improving quality of life for seriously ill individuals and their family members. Despite increasing availability, there are significant disparities in access to and utilization of palliative care, particularly among diverse, low-income, and community-dwelling older adults with chronic illness. Training frontline service providers is a novel approach to expanding access to palliative care among underserved elders. This article presents a process and outcome evaluation of a palliative care curriculum that was developed and piloted for geriatric case managers in a large urban area. We describe the background, planning, design, implementation, and preliminary outcomes associated with a pilot implementation of the curriculum. We conclude with implications for replicating efforts to enhance frontline providers' knowledge, skills, and self-efficacy in extending palliative care to communities that lack access to critical supports for their burdensome symptoms.

Identifying the Prevalence and Correlates of Caregiver-Reported Symptoms in Home Hospice Patients at the End of Life.

Background: Symptoms (e.g., pain, shortness of breath, and fatigue) at the end of life (EoL) are common. Although symptoms can contribute to poor quality of life at the EoL, much remains unknown regarding their prevalence and correlates in home hospice care. Objectives: To determine the prevalence and correlates of caregiver-reported symptoms in home hospice patients during the last week before discharge using the Edmonton Symptom Assessment Scale (ESAS). Design: This is a cross-sectional study measuring perceived patient symptoms using caregiver proxy data. Bivariate and multivariate analyses were conducted to examine patient and caregiver characteristics associated with ESAS scores. Setting/Subjects: Subjects were from an urban nonprofit home hospice organization. Measurements: Symptoms were measured using the ESAS. Results: The mean ESAS score was 51.2 (SD ±17.4). In bivariate analyses, higher perceived symptom score was associated with younger patient age (p < 0.001), younger caregiver age (p < 0.001), having a cancer diagnosis (p = 0.006), and lower caregiver comfort level managing symptoms (p < 0.001). Regression model analyses showed that younger patient age (p = 0.0009, p = 0.0036) and lower caregiver comfort level managing symptoms (p = 0.0047, p < 0.0001) were associated uniquely with higher symptom scores. Conclusions: Multiple symptoms of high severity were perceived by caregivers in the last week on home hospice. Patient age and caregiver comfort level in managing symptoms were associated with higher symptom scores. Further work is needed to improve management and treatment of symptoms in this care setting.

Bridging the Gap Between Aging Research and Practice: A New Strategy for Enhancing the Consensus Workshop Model.

Objectives: The Cornell Research-to-Practice (RTP) Consensus Workshop Model is a strategy for bridging the gap between aging research and practice but lacks a technique for evaluating the relative importance of ideas. This project assessed the feasibility of adding a quantitative survey to the RTP model to address this gap. Method: Older adults with cancer (OACs), OAC caregivers, researchers, clinicians, and advocacy organization representatives participated in a RTP workshop on implementing psychological interventions for OACs. Following an in-person workshop, participants completed surveys assessing the relative importance of barriers and strategies for psychological intervention implementation. Results: Seventeen of 35 participants completed the survey, the majority of which were likely clinicians. Barriers and strategies to implementation rated as having the greatest impact were associated with the care team and institutional factors. Conclusion: Quantitative ratings add novel information to the RTP model that could potentially enhance the model's impact on aging research and practice.

Assessing the palliative care needs and service use of diverse older adults in an urban medically-underserved community.

Although palliative care (PC) has become increasingly familiar, considerable gaps persist in access to and use of services. Community-based programs remain rare, and low-income, minority communities significantly under-utilize hospice and palliative services. We used community-based participatory research (CBPR) methods to conduct a mixed-methods community needs assessment of seriously-ill older adults (n=100) and providers from community-based programs and churches (n=41) in an urban medically-underserved community in the U.S. to explore: (I) the prevalence and severity of illness-related symptoms and psychosocial-spiritual concerns; (II) the scope and quality of community supports helping older adults manage their symptoms; and (III) the perceptions and utilization of palliative and supportive care services among older adults and community-based service providers. Participants reported high rates of chronic illness-related symptoms (i.e., pain, fatigue, sleeping difficulties, depression, and anxiety), and many described unmet needs around symptom management. Few had ever utilized PC or pain management services, and most relied primarily on family, friends, and faith communities to help them manage burdensome symptoms. Barriers included lack of familiarity with PC, limited access and financial concerns. Older adults were largely unfamiliar with PC, and many described unmet needs and desire for help with symptom burden. Findings support the need to further explore community-level and cultural barriers to PC among diverse, underserved older adults. Development of innovative community partnerships may help raise awareness of PC and address the physical and psychosocial-spiritual challenges facing chronically-ill minority older adults and their families.

It Is Not What You Think: Associations Between Perceived Cognitive and Physical Status and Prognostic Understanding in Patients With Advanced Cancer.

CONTEXT: Patients with advanced cancer often overestimate their time left to live. Those who have heightened awareness of their cognitive and physical deficits at the end of life may have a better prognostic understanding. OBJECTIVES: We sought to investigate the extent to which patients' self-reports of physical well-being and cognitive function were associated with prognostic understanding. METHODS: Logistic regression analyzed data from Coping with Cancer II, a National Cancer Institute-funded study of patients with advanced cancer from nine U.S. cancer clinics. Patients with metastatic cancers who had an oncologist-estimated life expectancy of less than six months and did not have significant cognitive impairment were eligible (N = 300). Trained interviewers administered subsets of the McGill Quality of Life and the Functional Assessment of Cancer Therapy-Cognition, Version 2, to measure physical well-being and cognitive complaints. There were four dichotomous outcomes: acknowledgment of their terminal illness; understanding that their diagnosis was late or end stage; belief that life expectancy was months, not years; and prognostic understanding, which was defined as accurate responses to all three questions. Covariates included age and gender. RESULTS: Worse patient-reported physical well-being and cognitive function were independently associated with the patient's acknowledgment of his and/or her terminal illness (adjusted odds ratio 0.91; 95% CI = 0.82, 1.00; P = 0.047 and adjusted odds ratio 1.73; 95% CI = 1.17, 2.55; P = 0.006, respectively). CONCLUSION: Patients who reported worse cognitive function and physical well-being were more aware of their terminal illness than those with better cognitive function.

Improving implementation of psychological interventions to older adult patients with cancer: Convening older adults, caregivers, providers, researchers.

INTRODUCTION: Older adults with cancer (OACs) are a large and growing population. Psychological distress is prevalent in this population yet few OACs receive evidence-based psychological care. The purpose of this project was to identify barriers and strategies for the implementation of psychological interventions to OACs from the perspective of OACs, OAC caregivers, researchers, clinicians, and advocacy organization members. METHODS: The Cornell Research-to-Practice (RTP) Consensus Workshop Model was used to organize and convene a consensus conference. The one-day conference consisted of small and large group discussions regarding barriers, facilitators, and strategies for the implementation of psychological interventions targeting OACs. A half-day roundtable meeting was subsequently conducted to organize data generated at the conference. De-identified transcriptions of the small group discussions were uploaded into NVivo 11 software and qualitatively analyzed using standard methods. RESULTS: Thirty-five participants attended the consensus conference from across stakeholder groups. Three themes related to implementation barriers were identified: lack of knowledge about psychological interventions in patients and providers; personal and social factors associated with being an OAC; and institutional-level factors. Themes related to implementation strategies focused on increasing awareness, tailoring interventions for older adults, and modifying institutional-level factors. DISCUSSION: Effective implementation of psychological interventions to OACs is complex and barriers exist across multiple levels of care. However, this project indicates that implementation can be improved in various ways that include all members of the healthcare system. Further clarification of implementation strategies and rigorous evaluation of their effectiveness is vital to improving care and care outcomes of OACs.

Mild cognitive dysfunction of caregivers and its association with care recipients' end-of-life plans and preferences.

Little is known about the association between cognitive dysfunction among informal caregivers and patients' plans and preferences for patients' end of life care. We report on the frequency of cognitive dysfunction among both patients and caregivers and examine associations between caregivers' cognitive screening scores and end of life plans and preferences of patients with advanced cancer. The current sample was derived from a National Cancer Institute- and National Institute of Mental Health-funded study of patients with distant metastasis who had disease progression on at least first-line chemotherapy, and their informal caregivers (n = 550 pairs). The Pfeiffer Short Portable Mental Status, a validated cognitive screen, was administered to patients and caregivers. Patients were interviewed about their end of life plans and preferences. Logistic regression models regressed patients' advance care planning and treatment preferences on caregivers' cognitive screen scores. Patients' cognitive screen scores were included as covariates. Most caregivers (55%) were spouses. Almost 30% of patients scored worse on the cognitive screen than their caregivers and 12% of caregivers scored worse than the patients. For each additional error that caregivers made on the cognitive screen, patients were more likely (AOR = 1.59, p = 0.002) to report that they preferred that everything possible be done to keep them alive and were less likely (AOR = 0.75, p = 0.04) to have a living will or a health care proxy/durable power of attorney. Worse caregiver cognitive screening scores were associated with higher likelihood of patients' reporting that they wanted everything done to save their lives and a lower likelihood of having a living will or other type of advanced care plan. Future studies should confirm these findings in other populations and determine the mechanisms that may underlie the identified relationships.

Associations between Mild Cognitive Dysfunction and End-of-Life Outcomes in Patients with Advanced Cancer.

BACKGROUND: Cognitive function of patients with advanced cancer is frequently compromised. OBJECTIVE: To determine the extent that patients' cognitive screening scores was associated with their end-of-life (EoL) treatment preferences, advance care planning (ACP), and care. DESIGN: Patients were interviewed at baseline and administered a cognitive screen. Caregivers completed a postmortem assessment. SETTING/SUBJECTS: Patients with distant metastases and disease progression after first-line chemotherapy and their caregivers (n = 609) were recruited from outpatient clinics and completed baseline and postmortem assessments. MEASUREMENTS: In logistic regression models adjusting for patients' age, education level, and performance status, patients' scores on the Pfeiffer Short Portable Mental Status exam at baseline predicted ACP, treatments, and treatment preferences at baseline, and location of death and caregiver perceptions of the patients' death in a postmortem assessment. RESULTS: For each additional error, patients were less likely to consider the intensive care unit a bad place to die (adjusted odds ratio [AOR] = 0.81; confidence interval [95% CI]: 0.66-0.98; p = 0.03) and less likely to have an inpatient hospice stay (AOR = 0.63; 95% CI: 0.40-1.00; p = 0.05). After death (n = 318), caregivers were more likely to perceive that patients died at patients' preferred location (AOR = 1.38; 95% CI: 1.01-1.88; p = 0.04) and less likely to perceive that patients preferred to extend life over relieving discomfort (AOR = 0.63; 95% CI: 0.40-0.99; p = 0.05). CONCLUSIONS: Patient cognitive screening scores were associated with EoL outcomes. Rather than avoid patients who are cognitively impaired, oncologists should consider ACP with them.

Decision Support for Joint Replacement: Implications for Decisional Conflict and Willingness to Undergo Surgery.

Objectives: The present study investigates age differences in the types of decision support that total joint replacement (TJR) candidates desire and receive when making the decision to pursue surgery. We consider the social structural (relationship to the patient) and experiential factors (network members' experience with TJR) that influence individuals' support preferences and the interactions of these factors with age. We also examine whether a lack of support is linked with increased decisional conflict and reduced willingness to undergo surgery. Method: A telephone survey was conducted with 100 individuals (aged 40+) who were contemplating knee or hip replacement. Results: TJR candidates desired and received decision support from health care providers, family members, and individuals who had previously undergone TJR. They reported higher deficits in informational and emotional support than in instrumental support. Overall, a lack of instrumental support was associated with greater decisional conflict; a lack of instrumental support and a lack of informational support were associated with reduced willingness to undergo TJR. Discussion: Our findings point to the importance of involving both formal and informal network members in TJR discussions, and the need for informational guidance and practical assistance to reduce decisional conflict and uncertainty among individuals considering TJR.

Why is high-quality research on palliative care so hard to do? Barriers to improved research from a survey of palliative care researchers.

BACKGROUND: Substantial agreement has been achieved on research priorities in palliative care over the past 15 years, as evidenced by consensus conferences and systematic reviews. Despite the presence of a widely endorsed research agenda, however, addressing the gaps in scientific knowledge has progressed slowly, suggesting that researchers face significant obstacles to conducting high-quality research on the most pressing topics in the field. OBJECTIVE: To systematically identify barriers to improved and expanded palliative care research as reported by researchers. DESIGN: Semistructured telephone interviews to solicit barriers to research in palliative care. SETTING/SUBJECTS: A purposive, interdisciplinary sample of 61 leading researchers in palliative care. MEASUREMENTS: Interviews were transcribed and analyzed using standard qualitative methods. RESULTS: Respondents named five barriers impeding progress: (1) funding, (2) institutional capacity, (3) researcher workforce, (4) challenges related to the topic and population (e.g., attrition, heightened human subjects protections), and (5) public and professional misunderstanding of palliative care and aversion to topics related to serious illness and end-of-life. CONCLUSIONS: Research in palliative care is being held back by significant barriers that require the attention of institutions and funders. The consensus within the interdisciplinary sample indicates that concentrated effort to address barriers related to funding and researcher workforce could facilitate progress on established research priorities. More research is needed on viable strategies for overcoming the identified barriers.

Novel telemedicine technologies in geriatric chronic non-cancer pain: primary care providers' perspectives.

OBJECTIVE: We sought to identify primary care providers' interest in, as well as perceived barriers and facilitators to, using novel telemedicine technologies (e.g., smartphones) for managing chronic non-cancer pain (CNCP) in older adults. DESIGN: Six focus groups were conducted with 25 primary care providers. SETTING: Two academically affiliated primary care practices serving older adults with CNCP in New York City. METHODS: The investigators used content analysis to analyze transcribed focus group data and identify specific themes. RESULTS: While most providers reported limited use of telemedicine, they expressed substantial interest in trying devices such as smartphones in the management of older patients with CNCP. Perceived barriers to implementation of telemedicine tools included information overload, lack of mobile device usability among patients and clinicians, liability issues, and cost. To overcome these barriers, participants suggested implementing electronic or human-based pre-analysis of data (e.g., a computer or a person that triages patient data), creating a low-cost and user-friendly mobile device design, and targeting appropriate user populations. CONCLUSIONS: Primary care providers are interested in applying telemedicine when caring for older adults with CNCP. Although they perceived multiple barriers to device implementation, they offered innovative solutions to address these barriers. Providers felt that novel telemedicine technologies may improve the management of CNCP but wanted evidence that the devices were both cost- and time-efficient, and led to improved patient outcomes before adopting their use in practice.

Disparities in symptom burden and renal transplant eligibility: a pilot study.

BACKGROUND: Patients with end-stage renal disease (ESRD) on hemodialysis (HD) suffer from a high symptom burden. However, there is significant heterogeneity within the HD population; certain subgroups, such as the elderly, may experience disproportionate symptom burden. OBJECTIVES: The study's objective was to propose a category of HD patients at elevated risk for symptom burden (those patients who are not transplant candidates) and to compare symptomatology among transplant ineligible versus eligible HD patients. DESIGN: This was a cross-sectional study. SETTING/SUBJECTS: English-speaking, cognitively intact patients receiving HD and who were either transplant eligible (n=25) or ineligible (n=32) were recruited from two urban HD units serving patients in the greater New York City region. MEASUREMENTS: In-person interviews were conducted to ascertain participants' symptom burden using the Dialysis Symptom Index (DSI), perceived symptom bother and attribution (whether the symptom was perceived to be related to HD treatment), and quality of life using the SF-36. Participants' medical records were reviewed to collect demographic and clinical data. RESULTS: Transplant ineligible (versus eligible) patients reported an average of 13.9±4.6 symptoms versus 9.2±4.4 symptoms (p<0.01); these differences persisted after adjustment for multiple factors. A greater proportion of transplant ineligible (versus eligible) patients attributed their symptoms to HD and were more likely to report greater bother on account of the symptoms. Quality of life was also significantly lower in the transplant ineligible group. CONCLUSIONS: Among HD patients, transplant eligibility is associated with symptom burden. Our pilot data suggest that consideration be given to employing transplant status as a method of identifying HD patients at risk for greater symptom burden and targeting them for palliative interventions.

High burden of palliative needs among older intensive care unit survivors transferred to post-acute care facilities. a single-center study.

RATIONALE: Adults with chronic critical illness (tracheostomy after ≥ 10 d of mechanical ventilation) have a high burden of palliative needs, but little is known about the actual use and potential need of palliative care services for the larger population of older intensive care unit (ICU) survivors discharged to post-acute care facilities. OBJECTIVES: To determine whether older ICU survivors discharged to post-acute care facilities have potentially unmet palliative care needs. METHODS: We examined electronic records from a 1-year cohort of 228 consecutive adults ≥ 65 years of age who had their first medical-ICU admission in 2009 at a single tertiary-care medical center and survived to discharge to a post-acute care facility (excluding hospice). Use of palliative care services was defined as having received a palliative care consultation. Potential palliative care needs were defined as patient characteristics suggestive of physical or psychological symptom distress or anticipated poor prognosis. We examined the prevalence of potential palliative needs and 6-month mortality. MEASUREMENTS AND MAIN RESULTS: The median age was 78 years (interquartile range, 71-84 yr), and 54% received mechanical ventilation for a median of 7 days (interquartile range, 3-16 d). Six subjects (2.6%) received a palliative care consultation during the hospitalization. However, 88% had at least one potential palliative care need; 22% had chronic wounds, 37% were discharged on supplemental oxygen, 17% received chaplaincy services, 23% preferred to not be resuscitated, and 8% were designated "comfort care." The 6-month mortality was 40%. CONCLUSIONS: Older ICU survivors from a single center who required postacute facility care had a high burden of palliative care needs and a high 6-month mortality. The in-hospital postcritical acute care period should be targeted for palliative care assessment and intervention.

A cognitive-behavioral plus exercise intervention for older adults with chronic back pain: race/ethnicity effect?

This pilot study examined the feasibility and potential efficacy of a self-management program for seniors with chronic back pain and assessed for possible race/ethnicity differences in program impact. Sixty-nine seniors (24 African Americans, 25 Hispanics, and 20 non-Hispanic Whites) enrolled in the 8-wk community-based program. Efficacy outcomes included pain-related disability as measured by the Roland Morris Disability Questionnaire (RMDQ), pain intensity, pain self-efficacy, depressive symptoms, social activity, and functional status. Eighty percent of enrollees completed the program. Clinically important decreases in RMDQ scores were found for non-Hispanic White (adjusted change score = -3.53), African American (-3.89), and Hispanic (-8.45) participants. Improvements in all other outcomes were observed, but only for Hispanic participants. Results confirm that implementation of the protocol in urban senior centers is feasible, and the program shows potential efficacy. The race/ethnicity differences observed in the current study merit further investigation.