Physician Transfer Versus Patient Transfer for Mechanical Thrombectomy in Patients With Acute Ischemic Stroke: A Systematic Review and Meta-Analysis.

BACKGROUND: Physician transfer is an alternate option to patient transfer for expedient performance of mechanical thrombectomy in patients with acute ischemic stroke. METHODS AND RESULTS: We conducted a systematic review to identify studies that evaluate the effect of physician transfer in patients with acute ischemic stroke who undergo mechanical thrombectomy. A search of PubMed, Scopus, and Web of Science was undertaken, and data were extracted. A statistical pooling with random-effects meta-analysis was performed to examine the odds of reduced time interval between stroke onset and recanalization, functional independence, death, and angiographic recanalization. A total of 12 studies (11 nonrandomized observational studies and 1 nonrandomized controlled trial) were included, with a total of 1894 patients. Physician transfer was associated with a significantly shorter time interval between stroke onset and recanalization with a pooled mean difference estimate of -62.08 (95% CI, -112.56 to -11.61]; P=0.016; 8 studies involving 1419 patients) with high between-study heterogeneity in the estimates (I2=90.6%). The odds for functional independence at 90 days were significantly higher (odds ratio, 1.29 [95% CI, 1.00-1.66]; P=0.046; 7 studies with 1222 patients) with physician transfer with low between-study heterogeneity (I2=0%). Physician transfer was not associated with higher odds of near-complete or complete angiographic recanalization (odds ratio, 1.18 [95% CI, 0.89-1.57; P=0.25; I2=2.8%; 11 studies with 1856 subjects). CONCLUSIONS: Physician transfer was associated with a significant reduction in the mean of time interval between symptom onset and recanalization and increased odds for functional independence at 90 days with physician transfer compared with patient transfer among patients who undergo mechanical thrombectomy.

Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing.

BACKGROUND: Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner. METHODS: Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction. DISCUSSION: In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. TRIAL REGISTRATION: The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.

Engaging Patients and Caregivers to Develop a Patient-Centered Agenda for Comparative Effectiveness Research Focused on the Treatment of Complex Knee Problems.

Complex articular cartilage loss in the knee is being diagnosed more frequently and earlier in life, and patients are faced with major decisions regarding invasive surgical interventions at increasingly younger ages. There is a critical unmet need to provide patient-centered comparative effectiveness research for the hundreds of thousands of patients faced with these treatment decisions each year. Toward filling the need, we developed the Patient AdvisoR Team iN Orthopaedic ReSearch (PARTNORS) program. We recruited a diverse group of patients and caregivers with lived experiences in dealing with complex knee problems to define patient-centered research priorities for comparative biological and artificial knee surgery research for middle-aged adults. Adapting the Stakeholder Engagement in Question Development and Prioritization Method, PARTNORS defined a 20-question list of patient-centered research questions of factors influencing a patients' choice between biological and artificial knee surgeries. The highest prioritized research question related to functional level postsurgery as it relates to daily activities and recreational activities. The second highest prioritized research questions related to insurance coverage and financial costs. Other prioritized research areas included caregiving needs, implant longevity, recovery and rehabilitation time, patient satisfaction and success rates, individual characteristics, and risks. By engaging a group of patients and caregivers and including them as members of a multidisciplinary research team, comparative effectiveness research that includes patient-centered factors that go beyond typical clinical success indicators for knee surgery can be designed to allow physicians and patients to work together toward evidence-based shared decisions. This shared decision-making process helps to align patients' and health care team's goals and expectations to improve outcomes.

Examining the Use of Text Messages Among Multidisciplinary Care Teams to Reduce Avoidable Hospitalization of Nursing Home Residents with Dementia: Protocol for a Secondary Analysis.

BACKGROUND: Reducing avoidable nursing home (NH)-to-hospital transfers of residents with Alzheimer disease or a related dementia (ADRD) has become a national priority due to the physical and emotional toll it places on residents and the high costs to Medicare and Medicaid. Technologies supporting the use of clinical text messages (TMs) could improve communication among health care team members and have considerable impact on reducing avoidable NH-to-hospital transfers. Although text messaging is a widely accepted mechanism of communication, clinical models of care using TMs are sparsely reported in the literature, especially in NHs. Protocols for assessing technologies that integrate TMs into care delivery models would be beneficial for end users of these systems. Without evidence to support clinical models of care using TMs, users are left to design their own methods and protocols for their use, which can create wide variability and potentially increase disparities in resident outcomes. OBJECTIVE: Our aim is to describe the protocol of a study designed to understand how members of the multidisciplinary team communicate using TMs and how salient and timely communication can be used to avert poor outcomes for NH residents with ADRD, including hospitalization. METHODS: This project is a secondary analysis of data collected from a Centers for Medicare & Medicaid Services (CMS)-funded demonstration project designed to reduce avoidable hospitalizations for long-stay NH residents. We will use two data sources: (1) TMs exchanged among the multidisciplinary team across the 7-year CMS study period (August 2013-September 2020) and (2) an adapted acute care transfer tool completed by advanced practice registered nurses to document retrospective details about NH-to-hospital transfers. The study is guided by an age-friendly model of care called the 4Ms (What Matters, Medications, Mentation, and Mobility) framework. We will use natural language processing, statistical methods, and social network analysis to generate a new ontology and to compare communication patterns found in TMs occurring around the time NH-to-hospital transfer decisions were made about residents with and without ADRD. RESULTS: After accounting for inclusion and exclusion criteria, we will analyze over 30,000 TMs pertaining to over 3600 NH-to-hospital transfers. Development of the 4M ontology is in progress, and the 3-year project is expected to run until mid-2025. CONCLUSIONS: To our knowledge, this project will be the first to explore the content of TMs exchanged among a multidisciplinary team of care providers as they make decisions about NH-to-hospital resident transfers. Understanding how the presence of evidence-based elements of high-quality care relate to avoidable hospitalizations among NH residents with ADRD will generate knowledge regarding the future scalability of behavioral interventions. Without this knowledge, NHs will continue to rely on ineffective and outdated communication methods that fail to account for evidence-based elements of age-friendly care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/50231.

Potential Neuroprotective Effects of Dietary Omega-3 Fatty Acids on Stress in Alzheimer's Disease.

BACKGROUND: A large number of individual potentially modifiable factors are associated with risk for Alzheimer's disease (AD). However, less is known about the interactions between the individual factors. METHODS: In order to begin to examine the relationship between a pair of factors, we performed a pilot study, surveying patients with AD and controls for stress exposure and dietary omega-3 fatty acid intake to explore their relationship for risk of AD. RESULTS: For individuals with the greatest stress exposure, omega-3 fatty acid intake was significantly greater in healthy controls than in AD patients. There was no difference among those with low stress exposure. CONCLUSIONS: These initial results begin to suggest that omega-3 fatty acids may mitigate AD risk in the setting of greater stress exposure. This will need to be examined with larger populations and other pairs of risk factors to better understand these important relationships. Examining how individual risk factors interact will ultimately be important for learning how to optimally decrease the risk of AD.

Holistic Assessment of Quality of Life Predicts Survival in Older Patients with Bladder Cancer.

OBJECTIVE: To determine if clustering methods can use a holistic assessment of health-related quality-of-life after bladder cancer diagnosis to predict survival outcomes independent of clinical characteristics. In the United States, an estimated 81,180 cases of bladder cancer will be diagnosed in 2022. We aim to help address the knowledge gap concerning the impact of patient functional status on outcomes. MATERIALS AND METHODS: This is a cross-sectional, retrospective cohort study of patients in the End Results-Medicare Health Outcomes Survey Registry. Age and 36-Item Short Form Survey (SF-36) responses were used as K-means inputs to identify homogenous clusters of older patients with bladder cancer. We analyzed the association between the identified clusters, patient and disease characteristics, and outcomes. We used Cox proportional hazard regression to compare overall survival. RESULTS: We identified 5 homogenous clusters that exhibited differences in patient characteristics and survival. There was no significant difference in cancer stage or surgery type among the clusters. The Cox proportional hazard regression demonstrated significant associations of cluster with gender, age, education, marital status, smoking status, type of surgery, and cancer stage on overall survival. Cluster independently predicted overall survival. CONCLUSION: Using unsupervised machine learning, we identified clusters of patients with bladder cancer who had similar mental and physical function scores. Cluster grouping suggests that patients' mental and physical function may not be based on disease or treatment. There are significant survival differences between all clusters, demonstrating that a holistic assessment of patient-reported health-related quality-of-life has the potential to predict survival and possible modifiable risk factors in older patients with bladder cancer.

Virtual Reality and Neurofeedback for Management of Cancer Symptoms: A Feasibility Pilot.

Background: Evidence suggests the usefulness of complementary and alternative medicine approaches, like neurofeedback and virtual reality, for the management of cancer-related pain and mood. It is not well-understood whether neurofeedback delivered through virtual reality is feasible and acceptable to patients actively undergoing cancer treatment. Objective: The purpose of this study was to explore the feasibility and acceptability of a nature-based virtual reality combined with neurofeedback as a non-pharmacologic strategy for managing cancer-related pain and anxiety. Methods: This study utilized a mixed-methods approach. Participants included 15 cancer patients undergoing treatment. Patients engaged in a 22-minute nature-based virtual reality experience, wearing a virtual reality headset with a Brainlink headband measuring EEG activity. Participants were asked to complete the Edmonton Symptom Assessment System revised version (ESAS-r) before (T1) and after (T3) the experience to measure pain and anxiety. They were asked their level of pain midway through the experience (T2) and completed a follow-up interview afterward. Results: This study revealed feasible delivery of a virtual reality intervention combined with neurofeedback for patients seeking cancer treatment. All participants (100%) completed the intervention experience. Patients report this is an acceptable approach to managing cancer-related pain and anxiety. Comparisons between patients' pain scores at T1, T2, and T3 reveal statistically significant reductions in pain (p .001). Patients also report decreased depression and anxiety. Conclusion: This is the first study examining virtual reality combined with neurofeedback as a non-pharmacologic intervention for managing cancer symptoms during treatment. The study reveals it is a promising for managing cancer-symptoms.

Individual-Level and Neighborhood-Level Factors Associated with Longitudinal Changes in Cardiometabolic Measures in Participants of a Clinic-Based Care Coordination Program: A Secondary Data Analysis.

Background: Identifying individual and neighborhood-level factors associated with worsening cardiometabolic risks despite clinic-based care coordination may help identify candidates for supplementary team-based care. Methods: Secondary data analysis of data from a two-year nurse-led care coordination program cohort of Medicare, Medicaid, dual-eligible adults, Leveraging Information Technology to Guide High Tech, High Touch Care (LIGHT2), from ten Midwestern primary care clinics in the U.S. Outcome Measures: Hemoglobin A1C, low-density-lipoprotein (LDL) cholesterol, and blood pressure. Multivariable generalized linear regression models assessed individual and neighborhood-level factors associated with changes in outcome measures from before to after completion of the LIGHT2 program. Results: 6378 participants had pre-and post-intervention levels reported for at least one outcome measure. In adjusted models, higher pre-intervention cardiometabolic measures were associated with worsening of all cardiometabolic measures. Women had worsening LDL-cholesterol compared with men. Women with pre-intervention HbA1c > 6.8% and systolic blood pressure > 131 mm of Hg had worse post-intervention HbA1c and systolic blood pressure compared with men. Adding individual's neighborhood-level risks did not change effect sizes significantly. Conclusions: Increased cardiometabolic risks and gender were associated with worsening cardiometabolic outcomes. Understanding unresolved gender-specific needs and preferences of patients with increased cardiometabolic risks may aid in tailoring clinic-community-linked care planning.

Engaging Specialist Palliative Care in the Management of Amyotrophic Lateral Sclerosis: A Patient-, Family-, and Provider-Based Approach.

Objective: To describe key stakeholders' perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders' general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care's definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.

Perspectives of patients with chronic pain about a pain science education video.

PURPOSE: Patients have responded in variable ways to pain science education about the psychosocial correlates of pain. To improve the effectiveness of pain education approaches, this study qualitatively explored participants' perceptions of and responses to pain science education. METHODS: We conducted a qualitative content analysis of interviews with fifteen, adult patients (73.3% female) who had recently attended a first visit to a chronic pain clinic and watched a pain science educational video. RESULTS: Participants thought it was important to improve their and healthcare providers' understanding of their pain. They viewed the video favorably, learned information from it, and thought it could feasibly facilitate communication with their healthcare providers, but, for many participants, the video either did not answer their questions and/or raised more questions. Participants' responses to the video included negative and positive emotions and were influenced by their need for confirmation that their pain was real and personal relevance of the pain science content. CONCLUSION: Study results support the feasibility and value of delivering pain science education via video and increase our understanding of patients' perceptions of and responses to pain science education. The video's triggering of emotional responses warrants additional research.

Testing Re-Engineered Discharge Program Implementation Strategies in SNFs.

The Re-Engineered Discharge (RED) program, designed for hospitals, is being trialed in skilled nursing facilities (SNFs) with promising results. This paper reports on the quantitative results of a multimethod study testing two different RED program implementation strategies in SNFs. A pretest-posttest design was used to compare utilization outcomes of two different RED implementation strategies (Enhanced and Standard) and overall group differences in four Midwestern SNFs. In the Standard group there were higher odds of being readmitted in the pre-intervention versus post-intervention period. After adjusting coefficients using Poisson regression, in the pre-intervention period the adjusted number of rehospitalizations for the Standard group was 45% higher at 30 days, 50% higher at 60 days (p = .01), and 39% higher at 180 days (p = .001). SNF RED may be a useful program to reduce rehospitalizations after discharge. Benefit of SNF RED is dependent on degree of adoption of the intervention.

Caregiver Speaks Study Protocol: A Technologically-Mediated Storytelling Intervention for Hospice Family Caregivers of Persons Living With Dementia.

OBJECTIVE: We present the protocol of a study aiming to examine the efficacy of a technologically-mediated storytelling intervention called Caregiver Speaks in reducing distress and grief intensity experienced by active and bereaved hospice family caregivers of persons living with dementia (PLWD). DESIGN: The study is a mixed-method, 2-group, randomized controlled trial. SETTING: This study takes place in 5 hospice agencies in the Midwest and Northeastern United States. PARTICIPANTS: Participants include hospice family caregivers of PLWD. INTERVENTION: Participants are randomized to usual hospice care or the intervention group. In the Caregiver Speaks intervention, caregivers engage in photo-elicitation storytelling (sharing photos that capture their thoughts, feelings, and reactions to caregiving and bereavement) via a privately facilitated Facebook group. This intervention will longitudinally follow caregivers from active caregiving into bereavement. The usual care group continues to receive hospice care but does not participate in the online group. OUTCOMES MEASURED: We anticipate enrolling 468 participants. Our primary outcomes of interest are participant depression and anxiety, which are measured by the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder screening (GAD-7). Our secondary outcomes of interest are participants' perceived social support, measured by the Perceived Social Support for Caregiving (PSSC) scale, and grief intensity, which is measured by the Texas Revised Inventory of Grief Present Subscale (TRIG-Present).

Caregivers' Experiences Regarding Training and Support in the Post-Acute Home Health-Care Setting.

BACKGROUND: Post-acute home health-care (HHC) services provide a unique opportunity to train and support family caregivers of older adults returning home after a hospitalization. To enhance family-focused training and support strategies, we must first understand caregivers' experiences. OBJECTIVE: To explore caregivers' experiences regarding training and support for managing older adults' physical functioning (PF) needs in the post-acute HHC setting. METHOD: We conducted a qualitative descriptive study using semi-structured telephone interviews of 20 family caregivers. Interviews were recorded, transcribed, and analyzed using conventional content analysis. RESULTS: We identified the following primary categories: facilitators to learning (eg, past experience, learning methods), barriers to learning (eg, learning on their own, communication, timing/logistics, preferred information and timing of information delivery), and interactions with HHC providers (eg, positive/negative interactions, provider training and knowledge). CONCLUSION: Caregivers were responsive to learning strategies to manage older adults' PF needs and, importantly, voiced ideas to improve family-focused training and support. HHC providers can use these findings to tailor training and support of family caregivers in the post-acute HHC setting.

Primary Care Clinic Nurse Activities with a Telehealth Monitoring System.

The purpose of this study was to evaluate differences in the types of nursing activities and communication processes reported in a primary care clinic between patients who used a home-based monitoring system to electronically communicate self-monitored blood glucose and blood pressure values and those who assumed usual care. Data were extracted from electronic medical records from individuals who participated in a randomized controlled trial comparing in-home monitoring and usual care in patients with Type 2 diabetes and hypertension being treated in a primary care clinic. Data about nursing activities initiated by primary care clinic nurses were compared between groups using descriptive statistics and independent t-tests. Significant differences between groups were identified for the direct care nursing activities of providing lifestyle and health education, medication adjustments, and patient follow-up. This study provides evidence of greater nursing activity reported in a primary care clinic in patients who utilized a home-based monitoring system.

Diagnosis, Treatment, and Prevention of Urinary Tract Infections in Post-Acute and Long-Term Care Settings: A Consensus Statement From AMDA's Infection Advisory Subcommittee.

The diagnosis and management of urinary tract infections (UTIs) among residents of post-acute and long-term care (PALTC) settings remains challenging. Nonspecific symptoms, complex medical conditions, insufficient awareness of diagnostic criteria, and unnecessary urine studies all contribute to the inappropriate diagnosis and treatment of UTIs in PALTC residents. In 2017, the Infection Advisory Subcommittee at AMDA-The Society for Post-Acute and Long-Term Care Medicine convened a workgroup comprised of experts in geriatrics and infectious diseases to review recent literature regarding UTIs in the PALTC population. The workgroup used evidence as well as their collective clinical expertise to develop this consensus statement with the goal of providing comprehensive guidance on the diagnosis, treatment, and prevention of UTIs in PALTC residents. The recommendations acknowledge limitations inherent to providing medical care for frail older adults, practicing within a resource limited setting, and prevention strategies tailored to PALTC populations. In addition, the consensus statement encourages integrating antibiotic stewardship principles into the policies and procedures used by PALTC nursing staff and by prescribing clinicians as they care for residents with a suspected UTI.

Adapting Project RED to Skilled Nursing Facilities.

This article describes our recommendation for adapting hospital-based RED (Reengineered Discharge) processes to skilled nursing facilities (SNFs). Using focus groups, the SNFs' discharge processes were assessed twice additionally, research staff then recorded field notes documenting discussions about facility discharge processes as they related to RED processes. Data were systematically analyzed using thematic analysis to identify recommendations for adapting RED to the SNF setting including (a) rapidly identifying, involving, and preparing family/caregivers to implement a patient focused SNF discharge plan; (b) reconnecting patients quickly to primary care providers; and (c) educating patients at discharge about their target health condition, medications, and impact of changes on other chronic health needs. Limited SNF staff capacity and corporate-level policies limited adoption of some key RED components. Transitional care processes such as RED, developed to avoid discharge problems, can be adapted for SNFs to improve their discharges.

Reengineering Skilled Nursing Facility Discharge: Analysis of Reengineered Discharge Implementation.

BACKGROUND: There is a need to adopt evidence-based approaches to discharge planning in the skilled nursing facility (SNF) short stay population. PURPOSE: This article describes implementation of the Reengineered Discharge (RED) process in SNFs and makes recommendations for its future implementation. METHODS: The methods included a pre- and postanalysis of an 18-month RED implementation with a contemporaneous comparison of 4 Midwestern SNFs randomly assigned to 2 different RED implementation strategies. The Standard facilities received less implementation than Enhanced facilities. RESULTS: Standard SNFs made more improvements and were more satisfied with the improved process than Enhanced SNFs. Field notes revealed that corporate willingness to make process changes impacted the Standard group's capacity for change; both groups were heavily influenced by external forces, and turnover was an impediment to RED implementation. CONCLUSION: This research revealed that discharge processes are similar across settings and that evidence-based programs such as RED can be adapted to the SNF setting.

Lay Advisor Interventions in Rural Populations: A Systematic Review and Meta-analysis.

CONTEXT: Age-adjusted death rates for heart disease are higher in rural areas than in urban areas. Lay advisors could potentially facilitate improvement in cardiovascular health outcomes. The aim of this systematic review and meta-analysis is to estimate lay advisor intervention effects on cardiovascular health metrics in rural populations. EVIDENCE ACQUISITION: Searches of databases including MEDLINE, CINAHL, and Scopus from 1975 through October 2017 retrieved 323 citations, of which 272 abstracts were reviewed. Two authors independently abstracted data from eligible studies. Analysis was conducted in March 2018. EVIDENCE SYNTHESIS: Of 21 articles included in the systematic review, eight were RCTs and 13 were pre- and post-intervention studies. Of the RCTs, three took place in the U.S. Only two studies had low risk of bias. Using a random effects model, meta-analysis of six RCTs (1,641 participants) showed that lay advisor interventions in rural residents were associated with improvement in HbA1c of 0.4% (95% CI=0.13, 0.66, p=0.004, I2=60.65%). From four RCTs (873 participants), lay advisor interventions significantly improved BMI with pooled effect of 2.18 (95% CI=1.13, 3.24, p<0.001, I2=0.00%). Most studies had normal baseline blood pressure and cholesterol levels before intervention, and no significant effects were noted for these outcomes. Diverse types of measures used for diet, physical activity, and smoking precluded statistical synthesis. CONCLUSIONS: Lay advisor interventions had significant positive effects on glycemic control and BMI for rural residents; however, further rigorous studies are needed in U.S. rural populations, and elements of effective lay advisor interventions require further investigation.

Stakeholder Perspectives on the Biopsychosocial and Spiritual Realities of Living With ALS: Implications for Palliative Care Teams.

CONTEXT: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS. OBJECTIVE: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. METHODS: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS. RESULTS: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease. CONCLUSION: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.