Informing Use of Telehealth for Managing Chronic Conditions: Mixed-Methods Evaluation of Telehealth Use to Manage Heart Failure During COVID-19.

Background The COVID-19 pandemic forced Veterans Health Administration facilities to rapidly adopt and deploy telehealth alternatives to provide continuity of care to veterans while minimizing physical contact. The impact of moving to virtual visits on patients with congestive heart failure (HF) is unknown. The goal of this study was to understand how patients with HF and their providers experienced the shift to telehealth for managing a chronic condition, and to inform best practices for continued telehealth use. Methods and Results We identified Veterans Health Administration Medical Centers with high telehealth use before COVID-19 and sites that were forced to adopt telehealth in response to COVID-19, and interviewed cardiology providers and veterans with HF about their experiences using telehealth. Interviews were recorded, transcribed, and analyzed using team-based rapid content analysis. We identified 3 trajectory patterns for cardiology telehealth use before and during COVID-19. They were the low-use class (low to low), high-use class (relatively high to higher), and increased-use class (low to high). The high-use and increased-use classes fit the criteria for sites that had high telehealth use before COVID-19 and sites that rapidly adopted telehealth in response to COVID-19. There were 12 sites in the high-use class and 4 sites in the increased-use class. To match with the number of sites in the increased-use class, we selected the top 4 sites by looking at the months before COVID-19. We identified 3 themes related to telehealth use among patients with HF and cardiology providers: (1) technology was the primary barrier for both patients and providers; (2) infrastructural support was the primary facilitator for providers; and (3) both patients and providers had largely neutral opinions on how telehealth compares to in-person care but described situations in which telehealth is not appropriate. Conclusions Only 12 sites fit the criteria of high telehealth use in cardiology before COVID-19, and 4 fit the criteria of low use that increased in response to COVID-19. Patients and providers at both site types were largely satisfied using telehealth to manage HF. Understanding best practices for managing ambulatory care-sensitive conditions through virtual visits can help the Veterans Health Administration prepare for long-term impacts of COVID-19 on in-person visits, as well as improve access to care for veterans who live remotely or who have difficulty traveling to in-person appointments.

Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: An interview study.

Individuals with dementia with Lewy bodies (DLB) commonly die from dementia-related causes, but little is known regarding caregiver experiences during the end-of-life period in DLB. This reflects a critical knowledge gap given the high frequency of informal caregiving for individuals with dementia, high caregiver burden in DLB, and the fact that most individuals with DLB die from this disease. Investigators conducted telephone interviews with family members of individuals who died with DLB in the last 5 years. Investigators used a qualitative descriptive approach to analyze interview transcripts. Participants included 15 children, 13 spouses, and 2 other family members. Interviews averaged 31 min. Major themes included caregivers as the main drivers of care for individuals with DLB throughout the disease course and at the end of life, the impact of DLB features (e.g., fluctuations, hallucinations, and delusions) on end-of-life experiences, experiences relating to the caregiving role, death and post-death experiences, and supports employed by caregivers in the end-of-life period. End-of-life experiences for caregivers of individuals with DLB built on the accumulated burden of the disease course, where caregivers were often responsible for driving DLB care-from making the diagnosis to educating healthcare professionals and double-checking medical decisions. While some end-of-life experiences were consistent with those described in dementia palliative care more generally (e.g., financial stresses, poor sleep, being overwhelmed, and needing increased education and support), many DLB features specifically affected end-of-life caregiver experiences, such as the presence of delusions. Improving caregiver experiences at the end of life in DLB will require improved diagnosis and care for individuals with DLB throughout the disease course and also better strategies for treating behavioral symptoms. More research is needed regarding drivers of quality end-of-life experiences for individuals with DLB and their families and how drivers and strategies may differ between dementias.

Examining the Relationship Between Environmental Factors and Inpatient Hospital Falls: Protocol for a Mixed Methods Study.

BACKGROUND: Patient falls are the most common adverse events reported in hospitals. Although it is well understood that the physical hospital environment contributes to nearly 40% of severe or fatal hospital falls, there are significant gaps in the knowledge about the relationship between inpatient unit design and fall rates. The few studies that have examined unit design have been conducted in a single hospital (non-Veterans Health Administration [VHA]) or a small number of inpatient units, limiting generalizability. The goal of this study is to identify unit design factors contributing to inpatient falls in the VHA. OBJECTIVE: The first aim of the study is to investigate frontline and management perceptions of and experiences with veteran falls as they pertain to inpatient environmental factors. An iterative rapid assessment process will be used to analyze the data. Interview findings will directly inform the development of an environmental assessment survey to be conducted as part of aim 2 and to contribute to interpretation of aim 2. The second aim of this study is to quantify unit design factors and compare spatial and environmental factors of units with higher- versus lower-than-expected fall rates. METHODS: We will first conduct walk-through interviews with facility personnel in 10 medical/surgical units at 3 VHA medical centers to identify environmental fall risk factors. Data will be used to finalize an environmental assessment survey for nurse managers and facilities managers. We will then use fall data from the VA Inpatient Evaluation Center and patient data from additional sources to identify 50 medical/surgical nursing units with higher- and lower-than-expected fall rates. We will measure spatial factors by analyzing computer-aided design files of unit floorplans and environmental factors from the environmental assessment survey. Statistical tests will be performed to identify design factors that distinguish high and low outliers. RESULTS: The VA Health Services Research and Development Service approved funding for the study. The research protocol was approved by institutional review boards and VA research committees at both sites. Data collection started in February 2018. Results of the data analysis are expected by February 2022. Data collection and analysis was completed for aim 1 with a manuscript of results in progress. For aim 2, the medical/surgical units were categorized into higher- and lower-than-expected fall categories, the environmental assessment surveys were distributed to facility managers and nurse managers. Data to measure spatial characteristics are being compiled. CONCLUSIONS: To our knowledge, this study is the first to objectively identify spatial risks for falls in hospitals within in a large multihospital system. Findings can contribute to evidence-based design guidelines for hospitals such as those of the Facility Guidelines Institute and the Department of Veterans Affairs. The metrics for characterizing spatial features are quantitative indices that could be incorporated in larger scale contextual studies examining contributors to falls, which to date often exclude physical environmental factors at the unit level. Space syntax measures could be used as physical environmental factors in future research examining a range of contextual factors-social, personal, organizational, and environmental-that contribute to patient falls. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/24974.

Clinical Care and Unmet Needs of Individuals With Dementia With Lewy Bodies and Caregivers: An Interview Study.

BACKGROUND: Patient-centered care requires understanding patient preferences and needs, but research on the clinical care preferences of individuals living with dementia and caregivers is sparse, particularly in dementia with Lewy bodies (DLB). METHODS: Investigators conducted telephone interviews with individuals living with DLB and caregivers from a Lewy body dementia specialty center. Interviews employed a semistructured questionnaire querying helpful aspects of care and unmet needs. Investigators used a qualitative descriptive approach to analyze transcripts and identify themes. RESULTS: Twenty individuals with DLB and 25 caregivers participated. Twenty-three of the caregivers were spouses, 2 were daughters. Aspects of clinical care valued by individuals with DLB and caregivers included clinician time, diagnosis, education, symptom management, communication, and caring staff. Unmet needs or challenges included patient/caregiver education, education of nonspecialist clinicians and community care providers, scheduling difficulties, caregiver support, financial concerns, assistance with advance care planning and finding local resources, and effective treatments for DLB symptoms. CONCLUSION AND RELEVANCE: Improving care for individuals with DLB and their families will require a multipronged strategy including education for nonspecialist care providers, increasing specialty care access, improved clinical care services, research to support disease prognosis and treatment decisions, and local and national strategies for enhanced caregiver support.

Research priorities of caregivers and individuals with dementia with Lewy bodies: An interview study.

BACKGROUND: Funding bodies are placing increased emphasis on patient and public involvement in research, but the research priorities of individuals and caregivers living with dementia with Lewy bodies (DLB) are unknown. METHOD: Investigators conducted telephone interviews with individuals living with DLB and caregivers. Participants were recruited from a Lewy Body Dementia Association Research Center of Excellence. Interviews employed a semi-structured questionnaire querying research needs in different categories and then asking participants to select their top priorities. Investigators used a qualitative descriptive approach to analyze transcripts and identify themes. RESULTS: Twenty individuals with DLB and 25 caregivers participated. Seventeen from each group participated as part of a patient-caregiver dyad. Twenty-three of the caregivers were spouses, two were daughters. Individuals with DLB and caregivers identified research needs relating to focusing on awareness, determining the cause of DLB, improving diagnosis, and investigating what to expect/disease stages. Participants also highlighted DLB symptoms needing additional research, therapies to prevent, cure, or slow the progression of DLB, and research targeting daily function and quality of life, caregiving, and improving education. CONCLUSIONS: These findings support the research priorities defined in the National Institutes of Health dementia care summits in addition to ADRD priority-setting summits. Research is needed across all domains of DLB. Funding should be informed by the priorities of all relevant stakeholders and support research investigating causes, natural history, biomarkers, and treatment in addition to research targeting themes regarding living with disease (e.g. independence, quality of life, caregiving, and education).

Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis.

OBJECTIVE: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. METHODS: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. RESULTS: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. CONCLUSION: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.

Virtual Support Groups for Informal Caregivers of Individuals With Dementia: A Scoping Review.

OBJECTIVE: The purpose of this scoping systematic review was to inform virtual support group development for informal caregivers of dementia by identifying published approaches, outcomes, barriers, and facilitators. METHODS: A scoping systematic review was performed using 5 search engines. Studies were included if they utilized virtual support groups for informal caregivers of persons with dementia. Study details, support group characteristics, outcomes, barriers, facilitators, and recommended approaches were extracted and summarized. RESULTS: Of 1052 identified articles, 87 were retrieved; 62 were excluded largely because they described other virtual interventions. Groups typically used teleconferences or internet-based videoconferences, included 4 to 6 participants, lasted 60 minutes, and occurred weekly or monthly. Moderators were professionals; moderator training was common. Content focused on support, education, or both. Covered topics included dementia knowledge, caregiving skills, coping, and resources. Costs related to technology, programming, and staffing. Although most studies identified no statistical differences, caregivers described many participation benefits. Common barriers were technology and access. Facilitators included training, technology support, small groups, and skilled leaders. CONCLUSIONS: Clinics desiring to start virtual support groups should consider videoconferencing or telephone approaches with pretraining, technology support, and professional moderators. Clinics need adequate resources, particularly for technology, and identification of locally relevant goals and approach.

Patient Stakeholder Versus Physician Preferences Regarding Amyloid PET Testing.

BACKGROUND: Patient and caregiver perspectives on amyloid positron emission tomography (PET) use are largely unexplored, particularly as compared with clinician views. METHODS: We surveyed clinicians, patients, caregivers, and dementia advocates on topics relating to an evidence-based guideline on amyloid PET use. Topic importance was rated on a 9-point scale. Patient stakeholder and clinician views were compared using the Mann-Whitney U test. RESULTS: Patient representatives (n=107) rated all survey topics as equal to or more important than clinicians (n=114) except 1 item discussing potential harms of false-positive diagnoses. Differences between patient representative and clinician populations were greatest when comparing the competing values of false-positive and false-negative diagnoses and the value of testing asymptomatic individuals. CONCLUSIONS: Patients and caregivers emphasized the importance of having a dementia diagnosis and placed more value on testing and outcomes for asymptomatic populations than clinicians. This underscores the importance of research investigating the effect of amyloid PET results on asymptomatic individuals and the need for amyloid PET ordering and disclosure standards.

End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers.

BACKGROUND: Dementia caregivers describe knowing what to expect as an unmet need and many are unaware that dementia can be a terminal condition. Dementia with Lewy bodies (DLB) is a common neurodegenerative dementia with unique features which may affect the end of life (EOL). Given the paucity of data on EOL experiences in dementia and unique aspects of DLB affecting EOL, we investigated EOL experiences as reported by caregivers of individuals with DLB. METHOD: We conducted telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years using a semi-structured questionnaire to identify and describe EOL experiences. We used a qualitative descriptive approach to analyze interview transcripts and identify common themes. RESULTS: Thirty individuals participated in interviews. Key themes included lack of knowledge regarding what to expect, end-of-life time course (including end-of-life symptoms, declines after hospitalization and falls, and varied EOL trajectories), advance care planning, lack of family understanding, hospice, views regarding right-to-die, medications at the end of life, approaching end of life, the death experience, and activities that enhanced end of life. Lack of communication between health care teams and families and difficulty predicting death timing were two frequently expressed challenges. CONCLUSIONS: Study results emphasize the need for improved EOL counseling in DLB, recognition of EOL symptoms, earlier hospice involvement, tailoring EOL care to DLB-specific needs, and clinician-family communication. Suggestions for patient and family education are provided. Further research should confirm predictors of approaching EOL in DLB, identify strategies to improve physician recognition of EOL, and develop tools to aid communication and quality EOL care.

Cause of Death and End-of-Life Experiences in Individuals with Dementia with Lewy Bodies.

OBJECTIVES: To investigate the natural history, cause of death, and end-of-life experiences of individuals diagnosed with dementia with Lewy bodies (DLB). DESIGN: Twenty-question online survey administered through the Lewy Body Dementia Association. SETTING: United States. PARTICIPANTS: Caregivers, family, and friends of individuals who died in the past 5 years with a diagnosis of DLB (survey respondents: n = 658, 89% female, median age 50-69). MEASUREMENTS: The survey included 3 questions about the respondent's background and 17 about the end-of-life experiences of the person with DLB. Topics included time from symptom onset and diagnosis to death, cause of death, advance directive completion, end-of-life education, hospice use, and location of death. Results were analyzed descriptively. RESULTS: Most individuals with DLB died within 5 years of diagnosis (median 3-4 years). Respondents indicated that physicians rarely discussed what to expect at the end of life (40% total, but only 22% to a helpful degree) and that the caregiver usually initiated such conversations. Death was usually expected, but fewer than half of respondents felt prepared for what to expect. Seventy-eight percent used hospice, usually at home or in skilled care, with wide variations in duration. Failure to thrive was the most common cause of death (65%), followed by pneumonia and swallowing difficulties (23%), other medical conditions (19%), and complications from falling (10%) (multiple causes allowed). CONCLUSION: Study results highlight a critical need for better prognostic counseling and education for persons and families living with DLB. The results of the current study can inform such counseling, but additional studies are needed to further explore expected prognosis of individuals diagnosed clinically with DLB and optimal use of palliative care services. J Am Geriatr Soc 67:67-73, 2019.