Abraham A. Brody

Abstract

Objectives: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. Methods: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. Results: We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. Significance of Results: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.

Abstract

BACKGROUND: Serious illness is characterized by high symptom burden that negatively affects quality of life (QOL). Although palliative care research has highlighted symptom burden in seriously ill adults with cancer, symptom burden among those with noncancer serious illness and multiple chronic conditions has been understudied. Latent class analysis is a statistical method that can be used to better understand the relationship between severity of symptom burden and covariates, such as the presence of multiple chronic conditions. Although latent class analysis has been used to highlight subgroups of seriously ill adults with cancer based on symptom clusters, none have incorporated multiple chronic conditions. OBJECTIVES: The objectives of this study were to (a) describe the demographic and baseline characteristics of seriously ill adults at the end of life in a palliative care cohort, (b) identify latent subgroups of seriously ill individuals based on severity of symptom burden, and (c) examine variables associated with latent subgroup membership, such as QOL, functional status, and the presence of multiple chronic conditions. METHODS: A secondary data analysis of a palliative care clinical trial was conducted. The latent class analysis was based on the Edmonton Symptom Assessment System, which measures nine symptoms on a scale of 0-10 (e.g., pain, fatigue, nausea, depression, anxiousness, drowsiness, appetite, well-being, and shortness of breath). Clinically significant cut-points for symptom severity were used to categorize each symptom item in addition to a categorized total score. RESULTS: Three latent subgroups were identified (e.g., low, moderate, and high symptom burden). Lower overall QOL was associated with membership in the moderate and high symptom burden subgroups. Multiple chronic conditions were associated with statistically significant membership in the high symptom burden latent subgroup. Older adults between 65 and 74 years had a lower likelihood of moderate or high symptom burden subgroup membership compared to the low symptom burden class. DISCUSSION: Lower QOL was associated with high symptom burden. Multiple chronic conditions were associated with high symptom burden, which underlines the clinical complexity of serious illness. Palliative care at the end of life for seriously ill adults with high symptom burden must account for the presence of multiple chronic conditions.

Abstract

Background: Breast cancer-related lymphedema (BCRL) limits the movements of patients' limbs, which leads to a diminished ability to achieve essential activities of daily living (ADLs). The purpose of this study was to examine the associations between limb volume changes from the baseline before breast cancer surgery and self-reported difficulty in performing ADLs at 12 months following cancer surgery. We hypothesized that a positive association existed between limb volume changes from the baseline and self-reported difficulty in performing ADLs at 12 months following breast cancer surgery. Methods and Results: The data of the present study were part of a larger study with 140 breast cancer patients recruited before breast cancer surgery and followed up during their first year of treatment. Patients with more than 10% limb volume increase reported more frequent distress in performing 13 ADL items, compared with patients whose limb volume increased by 5%-10%. Regression analysis showed a significant increase in the odds ratio of reporting difficulty in ADLs compared with the group with less than 5% limb volume increase. Conclusion: Overall, patients with a greater limb volume increase underwent more difficulty performing ADLs. Patients reported more difficulty in performing ADLs even with 5%-10% limb volume increase. Currently, there is no standardized guideline to diagnose BCRL, although previous evidence suggests a limb volume increase greater than 10% as a criterion for BCRL. The findings from the present study suggest a more precise and clinically meaningful criteria for diagnosing BCRL to accommodate those with 5%-10% increase in limb volume.

Abstract

Adult day service centers (ADSCs) provide community-based long-term care, including meals, to racially diverse older adults, 47% of whom have dementia and consequently experience elevated nutritional risk. We examine nutritional behaviors for Chinese and Vietnamese persons living with dementia (PLWD) in ADSCs and evaluate the extent to which ADSCs provide person-centered nutritional care. Multi-stakeholder interviews were conducted. Data were coded using Dedoose and analyzed using Braun and Clarke’s six-step method. The Model for the Provision of Good Nutritional Care in Dementia guided analysis. Barriers to food intake included distracting meal environment, rigid mealtimes, and excessively restrictive diets. Conversely, peer relationships, culturally tailored meals and celebrations, and consistent staff assisting with feeding benefited PLWD. ADSCs can support healthy nutritional behaviors and quality of life among PLWD through person-centered nutritional care. To optimize nutritional services, further exploration is needed with respect to the ADSC environment, users’ culture and ethnicity, and liberalized diets for PLWD.

Abstract

The Geriatric Emergency Care Applied Research (GEAR) Network (1) conducted a scoping review of the current literature on the identification of and interventions to address elder abuse among patients receiving care in emergency departments and (2) used this review to prioritize research questions for knowledge development. Two questions guided the scoping review: What is the effect of universal emergency department screening compared to targeted screening or usual practice on cases of elder abuse identified, safety outcomes, and health care utilization?; and What is the safety, health, legal, and psychosocial impact of emergency department-based interventions vs. usual care for patients experiencing elder abuse? We searched five article databases. Additional material was located through reference lists of identified publications, PsychInfo, and Google Scholar. The results were discussed in a consensus conference; and stakeholders voted to prioritize research questions. No studies were identified that directly addressed the first question regarding assessment strategies, but four instruments used for elder abuse screening in the emergency department were identified. For the second question, we located six articles on interventions for elder abuse in the emergency department; however, none directly addressed the question of comparative effectiveness. Based on these findings, GEAR participants identified five questions as priorities for future research–two related to screening, two related to intervention, and one encompassed both. In sum, research to identify best practices for elder abuse assessment and intervention in emergency departments is still needed. Although there are practical and ethical challenges, rigorous experimental studies are needed.

Abstract

Objectives: Telemedicine and telehealth are increasingly used in nursing homes (NHs). Their use was accelerated further by the COVID-19 pandemic, but their impact on patients and outcomes has not been adequately investigated. These technologies offer promising avenues to detect clinical deterioration early, increasing clinician's ability to treat patients in place. A review of literature was executed to further explore the modalities' ability to maximize access to specialty care, modernize care models, and improve patient outcomes. Design: Whittemore and Knafl's integrative review methodology was used to analyze quantitative and qualitative studies. Setting and Participants: Primary research conducted in NH settings or focused on NH residents was included. Participants included clinicians, NH residents, subacute patients, and families. Methods: PubMed, Web of Science, CINAHL, Embase, PsycNET, and JSTOR were searched, yielding 16 studies exploring telemedicine and telehealth in NH settings between 2014 and 2020. Results: Measurable impacts such as reduced emergency and hospital admissions, financial savings, reduced physical restraints, and improved vital signs were found along with process improvements, such as expedient access to specialists. Clinician, resident, and family perspectives were also discovered to be roundly positive. Studies showed wide methodologic heterogeneity and low generalizability owing to small sample sizes and incomplete study designs. Conclusions and Implications: Preliminary evidence was found to support geriatrician, psychiatric, and palliative care consults through telemedicine. Financial and clinical incentives such as Medicare savings and reduced admissions to hospitals were also supported. NHs are met with increased challenges as a result of the COVID-19 pandemic, which telemedicine and telehealth may help to mitigate. Additional research is needed to explore resident and family opinions of telemedicine and telehealth use in nursing homes, as well as remote monitoring costs and workflow changes incurred with its use.

Abstract

Background/Objectives: COVID-19 required rapid innovation throughout the healthcare system. Home-based primary care (HBPC) practices faced unique challenges maintaining services for medically complex older populations for whom they needed to adapt a traditionally hands-on, model of care to accommodate restrictions on in-person contact. Our aim was to determine strategies used by New York City (NYC)-area HBPC practices to provide patient care during the first wave of the COVID-19 pandemic with the goal of informing planning and preparation for home-based practices nationwide. Design: Cross-sectional qualitative design using semi-structured interviews. Setting: HBPC practices in the NYC metro area during spring 2020. Participants: HBPC leadership including clinical/medical directors, program managers, nurse practitioners/nursing coordinators, and social workers/social work coordinators (n = 13) at 6 NYC-area practices. Measurements: Semi-structured interviews explored HBPC practices' COVID-19 care delivery challenges, adaptations, and advice for providers. Interviewers probed patient care, end-of-life care, telehealth, community-based services and staffing. Interviews were recorded and transcribed. Data were analyzed through a combined inductive and deductive thematic approach. Results: Participants described care delivery and operational adaptations similar to those universally adopted across healthcare settings during COVID-19, such as patient outreach and telehealth. HBPC-specific adaptations included mental health services for patients experiencing depression and isolation, using multiple modalities of patient interactions to balance virtual care with necessary in-person contact, strategies to maintain patient trust, and supporting team connection of staff through daily huddles and emotional support during the surge of deaths among long-standing patients. Conclusion: NYC-area HBPC providers adapted care delivery and operations rapidly during the height of the COVID-19 pandemic. Keeping older, medically complex patients safe in their homes required considerable flexibility, transparency, teamwork, and partnerships with outside providers. As the pandemic continues to surge around the United States, HBPC providers may apply these lessons and consider resources needed to prepare for future challenges.

Abstract

Research on professional burnout during the pandemic has focused on hospital-based health care workers. This study examined the psychological impact of the pandemic on home-based primary care (HBPC) providers. We interviewed 13 participants from six HBPC practices in New York City including medical/clinical directors, program managers, nurse practitioners, and social workers and analyzed the transcripts using inductive qualitative analysis approach. HBPC providers experienced emotional exhaustion and a sense of reduced personal accomplishment. They reported experiencing grief of losing many patients at once and pressure to adapt to changing circumstances quickly. They also reported feeling guilty for failing to protect their patients and reduced confidence in their professional expertise. Strategies to combat burnout included shorter on-call schedules, regular condolence meetings to acknowledge patient deaths, and peer support calls. Our study identifies potential resources to improve the well-being and reduce the risk of burnout among HBPC providers.

Abstract

The rapid deployment of video visits during COVID-19 may have posed unique challenges for home-based primary care (HBPC) practices due to their hands-on model of care and older adult population. This qualitative study examined provider perceptions of video visits during the first wave of the COVID-19 crisis in New York City (NYC) through interviews with HBPC clinical/medical directors, program managers, nurse practitioners/nurse managers, and social work managers (n = 13) at six NYC-area practices. Providers reported a combination of commercial (health system-supported) and consumer (e.g., FaceTime) technological platforms was essential. Video visit benefits included triaging patient needs, collecting patient information, and increasing scheduling capacity. Barriers included cognitive and sensory abilities, technology access, reliance on caregivers and aides, addressing sensitive topics, and incomplete exams. Effectively integrating video visits requires considering how technology can be proactively integrated into practice. A policy that promotes platform flexibility will be crucial in fostering video integration.

Abstract

Objective: Seriously ill adults with multiple chronic conditions (MCC) who receive palliative care may benefit from improved symptom burden, health care utilization and cost, caregiver stress, and quality of life. To guide research involving serious illness and MCC, palliative care can be integrated into a conceptual model to develop future research studies to improve care strategies and outcomes in this population. Methods: The adapted conceptual model was developed based on a thorough review of the literature, in which current evidence and conceptual models related to serious illness, MCC, and palliative care were appraised. Factors contributing to patients’ needs, services received, and service-related variables were identified. Relevant patient outcomes and evidence gaps are also highlighted. Results: Fifty-eight articles were synthesized to inform the development of an adapted conceptual model including serious illness, MCC, and palliative care. Concepts were organized into 4 main conceptual groups, including Factors Affecting Needs (sociodemographic and social determinants of health), Factors Affecting Services Received (health system; research, evidence base, dissemination, and health policy; community resources), Service-Related Variables (patient visits, service mix, quality of care, patient information, experience), and Outcomes (symptom burden, quality of life, function, advance care planning, goal-concordant care, utilization, cost, death, site of death, satisfaction). Discussion: The adapted conceptual model integrates palliative care with serious illness and multiple chronic conditions. The model is intended to guide the development of research studies involving seriously ill adults with MCC and aid researchers in addressing relevant evidence gaps.