Abraham A Brody

Abstract

Background: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer’s disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD). Objective: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team. Design: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA. Subjects: Hospice social workers currently practicing in the United States with at least 1 year of experience. Measurements: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form. Results: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p <.0001) and confidence in managing behavioral symptoms (16.86%, p =.01) and depression (25.18%, p <.0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program. Conclusions: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.

Abstract

Purpose: Telehealth’s uptake has increased substantially in recent years, with an especially large jump in 2020 due to the emergence of COVID-19. This article provides background on and explores “telepresence” in healthcare literature. Telepresence strongly impacts the patient experience, but it is poorly defined in current research. The aim was to conceptually define telepresence using qualitative methods. Design: Dimensional analysis was used to analyze telepresence in clinical literature and create a clearer definition of telepresence as a concept. Multiple databases were searched for articles related to telepresence. Thirteen international articles related to telepresence were selected for analysis. Methods: Dimensional analysis allowed for multiple viewpoints to be explored within each distinct context and perspective. Findings: Twenty-five dimensions were discovered within the articles, which were synthesized to seven core dimensions of telepresence: connection, technological mediation, experienced realism, trust, being supportive, collaboration, and emotional consequence. Conclusions: Telepresence is highly impactful on the patient’s experience of telehealth care visits. The conceptual map produced by this dimensional analysis provides direction for clinicians to improve their ability to be present with patients during telehealth care. Potential implications include a starting point for future qualitative research, and the use of this dimensional analysis to inform clinical guidelines, improve clinician training, and assist in the development of new care models. Clinical Relevance: A telepresence definition brings clarity to an ill-defined concept. COVID-19 magnifies the need for a better understanding of telepresence, which allows clinicians to improve telehealth encounters.

Abstract

Background: The COVID-19 pandemic has resulted in a profound transformation of health care delivery toward telemedicine models. Purpose: We present the structure of a nurse-led telephonic palliative program and operational metrics to influence further development of tele-palliative programs. Methods: The nurses engage with seriously ill patients for 6 months with the goal of discussing advance care planning (ACP) and addressing self-identified issues related to their illness. Findings: Of the first 100 program graduates, 78% were actively engaged and 51% named a health care agent and/or engaged in ACP. Of the 18 patients who died during the study, 13 (72%) were enrolled in hospice services. Discussion: Our preliminary results indicate that seriously ill patients are willing to engage with nurses and to participate with discussions on ACP. Conclusion: Given the gaps in health care exposed by the COVID-19 pandemic, this innovative program serves as an important model for bringing palliative care directly to patients.

Abstract

Background: Palliative care interventions in the ED capture high-risk patients at a time of crisis and can dramatically improve patient-centered outcomes. Objective: To understand the facilitators that contributed to the success of the Primary Palliative Care for Emergency Medicine (PRIM-ER) quality improvement pilot intervention. Design: Effectiveness was evaluated through semi-structured interviews. Reach outcomes were measured by percent of all full-time emergency providers (physicians, physician assistants, nurses) who completed the intervention education components and baseline survey assessing attitudes and knowledge on end-of-life care. Participants: Emergency medicine providers affiliated with two medical centers (N = 197). Interviews conducted with six key informants at both institutions. Approach: Interviews were recorded, transcribed, and analyzed using deductive and inductive approaches. Descriptive statistics include reach outcomes and baseline survey results. Key Results: Both sites successfully implemented all components of the intervention and achieved a high level (> 75%) of intervention reach. Two themes emerged as facilitators to successful effectiveness facilitators of PRIM-ER: (1) institutional leadership support and (2) leveraging established quality improvement (QI) processes. Institutional support included leveraging leadership with authority to (a) mandate trainings; (b) substitute PRIM-ER education for normally scheduled education; and (c) provide protected time to implement intervention components. Effectiveness was also enhanced by capitalizing on existing QI processes which included (a) leveraging interdisciplinary partnerships and communication plans and (b) monitoring performance improvement data. Conclusions: Capitalizing on strong institutional leadership support and established QI processes enhanced the reach and effectiveness of the PRIM-ER pilot. These findings will guide the PRIM-ER researchers in scaling up the intervention in the remaining 33 sites, as well as enhance the planning of other complex quality improvement interventions in clinical settings. Registration Details: ClinicalTrials.gov Identifier: NCT03424109; Grant Number: AT009844-01.

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: 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

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

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.