A Home-Based Care Research Agenda by and for Homebound Older Adults and Caregivers.

Homebound older adults have not had a voice in establishing a research agenda relevant to their needs and perspectives. We engaged homebound older adults receiving home-based primary care and caregivers to serve as stakeholder advisors to develop a patient- and caregiver-centered research agenda for home-based care. Over 9 months, we facilitated eight tablet-enabled videoconference meetings. We oriented advisors to patient-centered outcome research and research question development. Advisors developed and prioritized a list of 14 research domains and 127 associated research questions. The top three prioritized research domains in descending rank order (number of associated research questions) were out-of-pocket costs of caregiving (10), access to home-based care and related policy issues (19), and relationship with doctors (15). This research agenda can guide researchers' efforts to focus on areas of importance to the ultimate end users of their research.

Understanding the Daily Experiences and Perceptions of Homebound Older Adults and Their Caregivers: A Qualitative Study.

More than 7.3 million older adults in the United States have difficulty leaving their homes or are completely homebound, yet little data exist on the experiences of homebound older adults and their caregivers. We conducted 30 semi-structured qualitative interviews with homebound older adults and caregivers recruited through home-based medical care practices in Baltimore and San Francisco. Thematic template analyses revealed that homebound older adults experience varying degrees of independence in activities of daily living, although their degree of dependence increases over time. Caregivers have a multifaceted, round-the-clock role. Both patients and caregivers experience burdens including social isolation and guilt. Navigating medical care and caregiving was further complicated by the complexity of the U.S. health care system; however, home-based medical care was viewed as a high-quality alternative to hospitals or nursing homes. Our findings suggest that providers and health care systems should expand the availability and accessibility of home-based care and improve caregiver support opportunities.

Attitudes of Homebound Older Adults and Their Caregivers Toward Research and Participation as Research Advisors.

BACKGROUND AND OBJECTIVES: Homebound older adults and their caregivers have not historically been engaged as advisors in patient-centered outcomes research. This study aimed to understand the attitudes of homebound older adults and their caregivers toward research and participation as research advisors. RESEARCH DESIGN AND METHODS: Descriptive thematic analysis of semistructured interviews conducted with 30 homebound older adults and caregivers recruited from home-based medical care practices. Interview questions addressed opinions on research and preferences for engaging as research advisors. RESULTS: Of 30 participants, 22 were female, 17 were people of color, and 11 had Medicaid. Two themes emerged related to perceptions of research overall: (a) utility of research and (b) relevance of research. Overall, participants reported positive attitudes toward research and felt that research could affect people like them. Three themes emerged related to participating as research advisors: (a) motivators, (b) barriers, and (c) preferences. Participants were open to engaging in a variety of activities as research advisors. Most participants were motivated by helping others. Common barriers included time constraints and caregiving responsibilities, and physical barriers for homebound individuals. Participants also reported fears such as lacking the skills or expertise to contribute as advisors. Many were willing to participate if these barriers were accommodated and shared their communication preferences. DISCUSSION AND IMPLICATIONS: Diverse homebound older adults and caregivers are willing to be engaged as research advisors and provided information to inform future engagement strategies. Findings can inform efforts to meet new age-inclusive requirements of the National Institutes of Health.

Multimorbidity and Opioid Prescribing in Hospitalized Older Adults.

Background: Multimorbidity and pain are both common among older adults, yet pain treatment strategies for older patients with multimorbidity have not been well characterized. Objectives: To assess the prevalence and relationship between multimorbidity and opioid prescribing in hospitalized older medical patients with pain. Methods: We collected demographic, morbidity, pain, and analgesic treatment data through structured review of the electronic medical records of a consecutive sample of 238 medical patients, aged ≥65 years admitted between November 2014 and May 2015 with moderate-to-severe pain by numerical pain rating scale (range 4-10). We used the Cumulative Illness Rating Scale for Geriatrics (CIRS-G) to assess multimorbidity and cumulative illness burden. We examined the relationship between morbidity measures and opioid prescribing at hospital discharge using multivariate regression analysis. Results: The mean age was 75 ± 8 years, 57% were female and 50% were non-White. Mean CIRS-G total score was 17 ± 6, indicating high cumulative illness burden. Ninety-nine percent of patients had multimorbidity, defined as moderate-to-extremely severe morbidity in ≥2 organ systems. Sixty percent of patients received an opioid prescription at discharge. In multivariate analyses adjusted for age, race, and gender, patients with a discharge opioid prescription were significantly more likely to have higher cumulative illness burden and chronic pain. Conclusion: Among older medical inpatients, multimorbidity was nearly universal, and patients with higher cumulative illness burden were more likely to receive a discharge opioid prescription. More studies of benefits and harms of analgesic treatments in older adults with multimorbidity are needed to guide clinical practice.

A systematic literature review of the assessment of treatment burden experienced by patients and their caregivers.

BACKGROUND: Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it. METHODS: Systematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included. RESULTS: Forty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire. CONCLUSIONS: Many instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time.

A Quality of Care Framework for Home-Based Medical Care.

More than 6 million adults in the United States are homebound or semi-homebound and would benefit from home-based medical care (HBMC). There is currently no nationally recognized quality of care framework for home-based medical care. We sought to capture diverse stakeholder perspectives on the essential aspects of quality HBMC and create a quality of care framework for homebound adults. A qualitative analysis of semistructured interviews from purposive sampling of key HBMC stakeholders was performed. Leaders from 12 exemplar HBMC practices (clinicians and administrators), advocacy groups (American Association of Retired Persons, National Partnership for Women and Families, Kaiser Family Foundation), and representatives from 3 key professional medical societies associated with HBMC participated in phone interviews. Semistructured interviews were based on domains of quality developed by the National Quality Forum (NQF) for individuals with multiple chronic conditions. We identified 3 categories of quality HBMC: provider and practice activities; provider characteristics; and outcomes for patients, caregivers, and providers. Within these 3 categories, we identified 10 domains and 49 standards for quality HBMC. These included 3 new domains (comprehensive assessment, patient/caregiver education, and provider competency) as well as specification and adaptation of the NQF Framework for Multiple Chronic Conditions domains for HBMC. Notably, several quality domains emanating from the NQF Framework for Multiple Chronic Conditions (transitions, access, and patient/caregiver engagement) were applicable to HBMC. This quality of care framework serves as a guide for HBMC practices seeking to improve their care quality and as a starting point for health systems and payers to ensure value from HBMC practices with whom they work.

Development of Quality Indicators to Address Abuse and Neglect in Home-Based Primary Care and Palliative Care.

OBJECTIVES: To develop candidate quality indicators (QIs) for the quality standard of "addressing abuse and neglect" in the setting of home-based medical care. DESIGN: Systematic literature review of both the peer-reviewed and gray literature. SETTING: Home-based primary and palliative care practices. PARTICIPANTS: Homebound community-dwelling older adults. MEASUREMENTS: Articles were identified to inform the development of candidate indicators of the quality by which home-based primary and palliative care practices addressed abuse and neglect. The literature guided the development of patient-level QIs and practice-level quality standards. A technical expert panel (TEP) representing exemplary home-based primary care and palliative care providers then participated in a modified Delphi process to assess the validity and feasibility of each measure and identify candidate QIs suitable for testing in the field. RESULTS: The literature review yielded 4,371 titles and abstracts that were reviewed; 25 publications met final inclusion criteria and informed development of nine candidate QIs. The TEP rated all but one of the nine candidate indicators as having high validity and feasibility. CONCLUSION: Translating the complex problem of addressing abuse and neglect into QIs may ultimately serve to improve care delivered to vulnerable home-limited adults who receive home-based medical care.

Homebound Patient and Caregiver Perceptions of Quality of Care in Home-Based Primary Care: A Qualitative Study.

OBJECTIVES: To assess patient and caregiver perceptions of what constitutes quality care in home-based primary care (HBPC). DESIGN: Cross-sectional qualitative design; semistructured interview study. SETTING: Academic home-based primary care program. PARTICIPANTS: Homebound patients (n = 13) and 10 caregivers (n = 10) receiving HBPC. MEASUREMENTS: Semistructured interviews explored experiences with a HBPC program and perceptions of quality care. Interviews were audio-recorded and transcribed. Qualitative content analysis was performed to identify major themes. RESULTS: Five major themes emerged related to participant perceptions of quality care: access, affordability, competency, care coordination, goal attainment. Participants felt that reliable, consistent access provided "peace of mind" and reduced hospital and emergency department use. Insurance coverage of program costs and coordinated care provided by an interdisciplinary team were positively regarded. Interpersonal skills and technical abilities of providers influenced patient perception of provider competency. Assessing and helping patients attain care goals contributed to a perception of quality care. CONCLUSION: Patients and caregivers associate high-quality HBPC with around-the-clock access to affordable interdisciplinary providers with strong interpersonal skills and technical competency. These results expand on prior research and are concordant with HBPC goals of around-the-clock access to multidisciplinary teams with the goals of reduced emergency department and hospital use. HBPC programs should be structured to optimize access, affordability, coordinated care, and goal ascertainment and alignment. Quality indicators should be created and validated with these patient and caregiver views of care quality in mind.

Development of an Interdisciplinary Team Communication Framework and Quality Metrics for Home-Based Medical Care Practices.

BACKGROUND: The unique needs of homebound adults receiving home-based medical care (HBMC) (ie, home-based primary care and home-based palliative care services) are ideally provided by interdisciplinary care teams (IDTs) that provide coordinated care. The composition of team members from an array of organizations and the unique dimension of providing care in the home present specific challenges to timely access and communication of patient care information. The objective of this work was to develop a conceptual framework and corresponding quality indicators (QIs) that assess how IDT members for HBMC practices access and communicate key patient information with each other. METHODS: A systematic review of peer-reviewed and gray literature was performed to inform a framework for care coordination in the home and the development of candidate QIs to assess processes by which all IDT members optimally access and use patient information. A technical expert panel (TEP) participated in a modified Delphi process to assess the validity and feasibility of each QI and to identify which would be most suitable for testing in the field. RESULTS: Thematic analysis of literature revealed 4 process themes for how HBMC practices might engage in high-quality care coordination: using electronic medical records, conducting interdisciplinary team meetings, sharing standardized patient assessments, and communicating via secure e-messaging. Based on these themes, 9 candidate QIs were developed to reflect these processes. Three candidate QIs were assessed by the TEP as valid and feasible to measure in an HBMC practice setting. These indicators focused on use of IDT meetings, standardized patient assessments, and secure e-messaging. CONCLUSION: Translating the complex issue of care coordination into QIs will improve care delivered to vulnerable home-limited adults who receive HBMC. Guided by the literature, we developed a framework to reflect optimal care coordination in the home setting and identified 3 candidate QIs to field-test in HBMC practices.

Implementation of an Interdisciplinary, Team-Based Complex Care Support Health Care Model at an Academic Medical Center: Impact on Health Care Utilization and Quality of Life.

INTRODUCTION: The Geriatric Resources for the Assessment and Care of Elders (GRACE) program has been shown to decrease acute care utilization and increase patient self-rated health in low-income seniors at community-based health centers. AIMS: To describe adaptation of the GRACE model to include adults of all ages (named Care Support) and to evaluate the process and impact of Care Support implementation at an urban academic medical center. SETTING: 152 high-risk patients (≥5 ED visits or ≥2 hospitalizations in the past 12 months) enrolled from four medical clinics from 4/29/2013 to 5/31/2014. PROGRAM DESCRIPTION: Patients received a comprehensive in-home assessment by a nurse practitioner/social worker (NP/SW) team, who then met with a larger interdisciplinary team to develop an individualized care plan. In consultation with the primary care team, standardized care protocols were activated to address relevant key issues as needed. PROGRAM EVALUATION: A process evaluation based on the Consolidated Framework for Implementation Research identified key adaptations of the original model, which included streamlining of standardized protocols, augmenting mental health interventions and performing some assessments in the clinic. A summative evaluation found a significant decline in the median number of ED visits (5.5 to 0, p = 0.015) and hospitalizations (5.5 to 0, p<0.001) 6 months before enrollment in Care Support compared to 6 months after enrollment. In addition, the percent of patients reporting better self-rated health increased from 31% at enrollment to 64% at 9 months (p = 0.002). Semi-structured interviews with Care Support team members identified patients with multiple, complex conditions; little community support; and mild anxiety as those who appeared to benefit the most from the program. DISCUSSION: It was feasible to implement GRACE/Care Support at an academic medical center by making adaptations based on local needs. Care Support patients experienced significant reductions in acute care utilization and significant improvements in self-rated health.

How do non-physician clinicians respond to advanced cancer patients' negative expressions of emotions?

PURPOSE: Patients with advanced cancer often experience negative emotion; clinicians' empathic responses can alleviate patient distress. Much is known about how physicians respond to patient emotion; less is known about non-physician clinicians. Given that oncology care is increasingly provided by an interdisciplinary team, it is important to know more about how patients with advanced cancer express emotions to non-physician clinicians (NPCs) and how NPCs respond to those empathic opportunities. METHOD: We audio recorded conversations between non-physician clinicians and patients with advanced cancer. We analyzed 45 conversations between patients and oncology physician assistants, nurse practitioners, and nurse clinicians in which patients or their loved ones expressed at least one negative emotion to the NPC (i.e., an empathic opportunity). Empathic opportunities were coded three ways: type of emotion (anger, sadness, or fear), severity of emotion (least, moderate, or most severe), and NPC response to emotion (not empathic, on-topic medical response, and empathic response). RESULTS: We identified 103 empathic opportunities presented to 25 different NPCs during 45 visits. Approximately half of the empathic opportunities contained anger (53%), followed by sadness (25%) and fear (21%). The majority of emotions expressed were moderately severe (73%), followed by most severe (16%), and least severe (12%). The severity of emotions presented was not found to be statistically different between types of NPCs. NPCs responded to empathic opportunities with empathic statements 30% of the time. Additionally, 40% of the time, NPCs responded to empathic opportunities with on-topic, medical explanations and 30% of the responses were not empathic. CONCLUSION: Patients expressed emotional concerns to NPCs typically in the form of anger; most emotions were moderately severe, with no statistical differences among types of NPC. On average, NPCs responded to patient emotion with empathic language only 30% of the time. A better understanding of NPC-patient interactions can contribute to improved communication training for NPCs and, ultimately, to higher quality patient care in cancer.

Effect of patient and patient-oncologist relationship characteristics on communication about health-related quality of life.

OBJECTIVE: To test the effects of patient and patient-oncologist relationship factors on the time spent communicating about health-related quality of life (HRQOL) during outpatient clinic encounters between oncologists and their patients with advanced cancer. METHODS: Using mixed methods, we coded for duration of HRQOL talk in a subset of audio-recorded conversations from the Study of Communication in Oncologist-Patient Encounters (SCOPE) Trial. Multivariable linear regression modeling was used to investigate the relationship between duration of HRQOL talk and gender concordance, race concordance, patient education status, patient marital status, and length of the patient-oncologist relationship (i.e. number of previous visits). RESULTS: Sixty-six encounters were analyzed that involved 63 patients and 34 oncologists. Patients were more likely to be female (51%), white (86%), married (78%), and possess a college or more advanced degree (33%). Most oncologists were male (82%) and white (82%). Mean ages were 58.8 years for patients and 44.9 years for oncologists. Regression results showed that the number of a patient's previous visits with their oncologist was significantly associated with a longer duration of HRQOL talk during their audio-recorded clinic visit. The remaining independent variables, gender concordance, race concordance, patient education status, and patient marital status were not significant predictors of duration of HRQOL talk. CONCLUSIONS: Our findings suggest that length of the patient-oncologist relationship is related to duration of HRQOL talk. Improvements in HRQOL communication may best be achieved through efforts directed at those in earlier stages of the doctor-patient relationship.

Communication practices in physician decision-making for an unstable critically ill patient with end-stage cancer.

BACKGROUND: Shared decision-making has become the standard of care for most medical treatments. However, little is known about physician communication practices in the decision making for unstable critically ill patients with known end-stage disease. OBJECTIVE: To describe communication practices of physicians making treatment decisions for unstable critically ill patients with end-stage cancer, using the framework of shared decision-making. DESIGN: Analysis of audiotaped encounters between physicians and a standardized patient, in a high-fidelity simulation scenario, to identify best practice communication behaviors. The simulation depicted a 78-year-old man with metastatic gastric cancer, life-threatening hypoxia, and stable preferences to avoid intensive care unit (ICU) admission and intubation. Blinded coders assessed the encounters for verbal communication behaviors associated with handling emotions and discussion of end-of-life goals. We calculated a score for skill at handling emotions (0-6) and at discussing end of life goals (0-16). SUBJECTS: Twenty-seven hospital-based physicians. RESULTS: Independent variables included physician demographics and communication behaviors. We used treatment decisions (ICU admission and initiation of palliation) as a proxy for accurate identification of patient preferences. Eight physicians admitted the patient to the ICU, and 16 initiated palliation. Physicians varied, but on average demonstrated low skill at handling emotions (mean, 0.7) and moderate skill at discussing end-of-life goals (mean, 7.4). We found that skill at discussing end-of-life goals was associated with initiation of palliation (p = 0.04). CONCLUSIONS: It is possible to analyze the decision making of physicians managing unstable critically ill patients with end-stage cancer using the framework of shared decision-making.