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CONTEXT: People with late-stage Alzheimer's diseases and related dementias (ADRD) have high risk for postacute complications and readmission; however, minimal research describes hospital transitional care. OBJECTIVE: Within the context of the ongoing ADRD-PC clinical trial, the purpose of this study was to describe the content and quality of transitional care of people with ADRD. METHODS: Descriptive mixed methods using data from a retrospective chart review and interviews with palliative care social workers and a nurse providing transitional care in the ADRD-PC clinical trial. RESULTS: Of 40 dyads of people with late-stage ADRD and their caregivers, palliative care plans were documented for 29 patients (73%); completed postdischarge calls in 72 hours were made for 39 (98%) caregivers and calls in 2 weeks were made for 33 (78%). The content of postdischarge care was promoting continuity, identifying resources, helping caregivers feel heard, troubleshooting problems, and providing grief support. Challenges during transitional care were limited time to engage caregivers in hospital-based palliative care, educate caregivers about palliative care plans, coordinate care after transfers to long term care, and the scarcity of community ADRD resources. Facilitators of high quality transitional care were continuity of staff who saw the patient or caregiver across hospital and postacute contacts, caregiver understanding of goals of care, written palliative care plans, and resources for postdischarge care. CONCLUSION: Findings indicate high quality dementia-specific transitional care occurs when staff have resources, such as ADRD training and care planning template, to pull the hospital palliative care plan forward into the postdischarge destination, help families fit the plan to new circumstances, and manage strain and grief related to changes in health and function.
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BACKGROUND: The population of people living with dementia (PLwD) continues to grow in Japan where advance care planning (ACP) for PLwD is relatively new. Our aim was to evaluate the feasibility and cultural acceptability of a dementia-specific ACP communication skills toolkit for Japanese primary care clinicians. METHODS: We delivered 13 training sessions in primary care clinics across central Japan and conducted a post-training survey to assess whether the toolkit increased confidence in dementia-specific ACP communication skills and the acceptability of the toolkit with the following four statements: (1) The language in the sessions was clear, (2) The sessions took an appropriate amount of time to complete, (3) The design of the sessions was an effective educational method, and (4) The sessions were culturally appropriate for communication with Japanese patients with dementia and their family members. We asked participants to respond using a 5-point Likert scale from strongly agree to strongly disagree. RESULTS: All participants were Japanese and included 80 physicians (mean age 39.8 years), 33 nurses (mean age 45.7 years), and 58 other participants (mean age 42.9 years), who were 30.0%, 87.9%, and 55.2% female, respectively. Most participants practiced in rural settings. In pre- post-comparisons, participant confidence increased in determining capacity, understanding dementia prognosis, goals of care, eliciting surrogates, recommending self-care practices to families, and leading family meetings (all p < 0.001). Most participants strongly agreed or agreed that the toolkit was an effective method (96.9%), took an appropriate amount of time (94.5%), contained clear language (89.8%), and was culturally appropriate (73.6%). CONCLUSIONS: Dementia-specific ACP communication skills toolkit can be delivered in Japan. Japanese primary care clinicians generally felt the dementia-specific ACP toolkit increased their confidence in ACP communication skills and was acceptable. The language, time, and design were well received, though further work is needed to improve the cultural appropriateness of the toolkit.
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BACKGROUND: Gold standard dementia assessments are rarely available in large real-world datasets, leaving researchers to choose among methods with imperfect but acceptable accuracy to identify nursing home (NH) residents with dementia. In healthcare claims, options include claims-based diagnosis algorithms, diagnosis indicators, and cognitive function measures in the Minimum Data Set (MDS), but few studies have compared these. We evaluated the proportion of NH residents identified with possible dementia and concordance of these three. METHODS: Using a 20% random sample of 2018-2019 Medicare beneficiaries, we identified MDS admission assessments for non-skilled NH stays among individuals with continuous enrollment in Medicare Parts A, B, and D. Dementia was identified using: (1) Chronic Conditions Warehouse (CCW) claims-based algorithm for Alzheimer's disease and non-Alzheimer's dementia; (2) MDS active diagnosis indicators for Alzheimer's disease and non-Alzheimer's dementias; and (3) the MDS Cognitive Function Scale (CFS) (at least mild cognitive impairment). We compared the proportion of admissions with evidence of possible dementia using each criterion and calculated the sensitivity, specificity, and agreement of the CCW claims definition and MDS indicators for identifying any impairment on the CFS. RESULTS: Among 346,013 non-SNF NH admissions between 2018 and 2019, 57.2% met criteria for at least one definition (44.7% CFS, 40.7% CCW algorithm, 26.0% MDS indicators). The MDS CFS uniquely identified the greatest proportion with evidence of dementia. The CCW claims algorithm had 63.7% sensitivity and 78.1% specificity for identifying any cognitive impairment on the CFS. Active diagnosis indicators from the MDS had lower sensitivity (47.0%), but higher specificity (91.0%). CONCLUSIONS: Claims- and MDS-based methods for identifying NH residents with possible dementia have only partial overlap in the cohorts they identify, and neither is an obvious gold standard. Future studies should seek to determine whether additional functional assessments from the MDS or prescriptions can improve identification of possible dementia in this population.
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Demência , Medicare , Casas de Saúde , Humanos , Estados Unidos , Masculino , Demência/diagnóstico , Feminino , Medicare/estatística & dados numéricos , Idoso de 80 Anos ou mais , Casas de Saúde/estatística & dados numéricos , Idoso , Algoritmos , Disfunção Cognitiva/diagnóstico , Doença de Alzheimer/diagnóstico , Cognição , Revisão da Utilização de Seguros/estatística & dados numéricos , Instituição de Longa Permanência para Idosos/estatística & dados numéricosRESUMO
PURPOSE: Mortality data can complement primary end points from cancer clinical trials. Yet, identifying deaths after trial completion is challenging, as timely and comprehensive vital status data are unavailable in the United States. We developed and evaluated a multisource approach to capture death data after clinical trial completion. METHODS: Individuals age 70 years and older with incurable solid tumors or lymphoma and ≥1 aging-related condition were enrolled from October 2014 to March 2019 (ClinicalTrials.gov identifier: NCT02107443 and NCT02054741). Participants provided consent to link trial information to external sources. We developed a stepped approach for extended death capture using (1) active trial follow-up up to 1 year, (2) linkage to the National Death Index (NDI), and (3) obituary searches, thus generating a 5-year survival curve. In a random sample of 50 participants who died during trial follow-up, we estimated sensitivity of death data using NDI and obituary sources and computed survival times by data source. RESULTS: The two trials enrolled 1,169 participants; mean age was 76 years; 46% were female; and gastrointestinal cancer (30%) and lung cancer (26%) were the most common cancer types. Across data sources, maximum follow-up was >7 years; 5-year survival was 18%. In total, there were 841 deaths: 603 identified during trial follow-up; 199 from the NDI; and 39 from obituary searches. The sensitivity for death capture was 92% for the NDI and 94% for the obituary searches compared with the trial data, and computed survival times were similar across data sources. CONCLUSION: Extending clinical trial mortality follow-up through linkage with external data sources was feasible and accurate. Future cancer clinical trials should collect necessary consent and patient identifiers for vital status linkages that can enhance understanding of longer-term outcomes.
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Neoplasias , Idoso , Feminino , Humanos , Masculino , Seguimentos , Neoplasias/diagnóstico , Neoplasias/terapia , Estados Unidos , Ensaios Clínicos como AssuntoRESUMO
BACKGROUND: Limited research has evaluated the validity of claims-based definitions for deprescribing. OBJECTIVES: Evaluate the validity of claims-based definitions of deprescribing against electronic health records (EHRs) for deprescribing of benzodiazepines (BZDs) after a fall-related hospitalization. METHODS: We used a novel data linkage between Medicare fee-for-service (FFS) and Part D with our health system's EHR. We identified patients aged ≥66 years with a fall-related hospitalization, continuous enrollment in Medicare FFS and Part D for 6 months pre- and post-hospitalization, and ≥2 BZD fills in the 6 months pre-hospitalization. Using a standardized EHR abstraction tool, we adjudicated deprescribing for a sub-sample with a fall-related hospitalization at UNC. We evaluated the validity of claims-based deprescribing definitions (e.g., gaps in supply, dosage reductions) versus chart review using sensitivity and specificity. RESULTS: Among 257 patients in the overall sample, 44% were aged 66-74 years, 35% had Medicare low-income subsidy, 79% were female. Among claims-based definitions using gaps in supply, the prevalence of BZD deprescribing ranged from 8.2% (no refills) to 36.6% (30-day gap). When incorporating dosage, the prevalence ranged from 55.3% to 65.8%. Among the validation sub-sample (n = 47), approximately one-third had BZDs deprescribed in the EHR. Compared to EHR, gaps in supply from claims had good sensitivity, but poor specificity. Incorporating dosage increased sensitivity, but worsened specificity. CONCLUSIONS: The sensitivity of claims-based definitions for deprescribing of BZDs was low; however, the specificity of a 90-day gap was >90%. Replication in other EHRs and for other low-value medications is needed to guide future deprescribing research.
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Desprescrições , Medicare , Idoso , Humanos , Feminino , Estados Unidos , Masculino , Previsões , Hospitalização , Registros Eletrônicos de Saúde , BenzodiazepinasRESUMO
Rationale: Family caregivers of patients with acute cardiorespiratory failure are at high risk for distress, which is typically defined as the presence of psychological symptoms such as anxiety, depression, or posttraumatic stress. Interventions to reduce caregiver distress and increase wellness have been largely ineffective to date. An incomplete understanding of caregiver wellness and distress may hinder efforts at developing effective support interventions. Objectives: To allow family caregivers to define their experiences of wellness and distress 6 months after patient intensive care unit (ICU) admission and to identify moderators that influence wellness and distress. Methods: Primary family caregivers of adult patients admitted to the medical ICU with acute cardiorespiratory failure were invited to participate in a semistructured interview 6 months after ICU admission as part of a larger prospective cohort study. Interview guides were used to assess caregiver perceptions of their own well-being, record caregiver descriptions of their experiences of family caregiving, and identify key stress events and moderators that influenced well-being during and after the ICU admission. This study was guided by the Chronic Traumatic Stress Framework conceptual model, and data were analyzed using the five-step framework approach. Results: Among 21 interviewees, the mean age was 58 years, 67% were female, and 76% were White. Nearly half of patients (47%) had died before the caregiver interview. At the time of the interview, 9 caregivers endorsed an overall sense of distress, 10 endorsed a sense of wellness, and 2 endorsed a mix of both. Caregivers defined their experiences of wellness and distress as multidimensional and composed of four main elements: 1) positive versus negative physical and psychological outcomes, 2) high versus low capacity for self-care, 3) thriving versus struggling in the caregiving role, and 4) a sense of normalcy versus ongoing life disruption. Postdischarge support from family, friends, and the community at large played a key role in moderating caregiver outcomes. Conclusions: Caregiver wellness and distress are multidimensional and extend beyond the absence or presence of psychological outcomes. Future intervention research should incorporate novel outcome measures that include elements of self-efficacy, preparedness, and adaptation and optimize postdischarge support for family caregivers.
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Cuidadores , Unidades de Terapia Intensiva , Pesquisa Qualitativa , Humanos , Feminino , Masculino , Cuidadores/psicologia , Pessoa de Meia-Idade , Estudos Prospectivos , Idoso , Adulto , Estresse Psicológico/psicologia , Adaptação Psicológica , Depressão/psicologia , Ansiedade/psicologia , Insuficiência Respiratória/psicologia , Insuficiência Respiratória/terapia , Insuficiência Cardíaca/psicologia , Família/psicologia , Apoio SocialRESUMO
BACKGROUND: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. METHODS: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia. The 11-member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. RESULTS: LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. CONCLUSIONS: The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.
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Doença de Alzheimer , Disfunção Cognitiva , Humanos , Feminino , Masculino , Doença de Alzheimer/terapia , Doença de Alzheimer/complicações , Disfunção Cognitiva/complicações , Cuidadores , Etnicidade , Progressão da DoençaRESUMO
BACKGROUND: Many interventions improve care and outcomes for people with Alzheimer's Disease and related dementias (ADRD), yet are never disseminated. Pragmatic trials facilitate the adoption and dissemination of best practices, but gaps in pragmatic outcome measurement are a critical obstacle. Our objectives are (1) to describe the development and structure of the IMbedded Pragmatic ADRD Clinical Trials Collaboratory (IMPACT) iLibrary of potential outcome measures for ADRD pragmatic trials, and (2) to assess their pragmatic characteristics. METHODS: We identified potential outcome measures from several sources: a database of administrative and clinical outcome measures from ADRD clinical trials registered in ClinicalTrials.gov, published reviews, and IMPACT pilot pragmatic trial outcome measures. The iLibrary reports (a) number of items, (b) completion time, (c) readability for diverse populations, (d) cost or copyright barriers to use, (e) method of administration, (f) assessor training burden, and (g) feasibility of data capture and interpretation in routine care; a summary of pragmatic characteristics of each outcome measure (high, moderate, low); items or descriptions of items; and links to primary citations regarding development or psychometric properties. RESULTS: We included 140 outcome measures in the iLibrary: 66 administrative (100% were pragmatic) and 74 clinical (52% were pragmatic). The most commonly addressed outcome domains from administrative assessments included physical function, quality of care or communication concerns, and psychological symptoms or distress behaviors. The most commonly addressed outcome domains from clinical assessments were psychological symptoms or distress behaviors, physical function, cognitive function, and health-related quality of life. CONCLUSIONS: Pragmatic outcome measures are brief, meaningful to diverse populations, easily scored and interpreted by clinicians, and available in electronic format for analysis. The iLibrary can facilitate the selection of measures for a wide range of outcomes relevant to people with ADRD and their care partners.
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Doença de Alzheimer , Qualidade de Vida , Humanos , Doença de Alzheimer/diagnóstico , Cognição , Avaliação de Resultados em Cuidados de SaúdeRESUMO
Little is known about caregivers' perspectives on deprescribing bisphosphonates for older adults with dementia. Caregivers agreed that fracture prevention was important for maintaining functional independence but acknowledged that changing goals of care may justify deprescribing. Conversations grounded in "what matters most" can align fracture prevention treatment with goals of care. PURPOSE: The long-term fracture prevention benefits of bisphosphonates may begin to be overshadowed by the potential burden of adverse effects and polypharmacy for older adults living with dementia as the disease progresses. We characterized factors that influence caregiver decision-making for continuing versus deprescribing bisphosphonates for persons living with dementia. METHODS: We conducted 11 interviews with family or informal caregivers of older adults living with dementia in the community or in long-term care who had been treated with bisphosphonates. Interviews focused on experiences caring for someone who has experienced a fracture, perceived benefits and harms of bisphosphonates, and experiences with deprescribing. Analyses were conducted using a qualitative framework methodology guided by the Health Belief Model. RESULTS: Most caregivers were male (n = 8), younger than 65 (n = 8) and were an adult child caregiver (n = 8). Three caregivers were Black and five were Latino/a. Attempts to maintain functional independence despite high likelihood of falls was frequently discussed as contributing to fracture risk, in this population. Many caregivers perceived fracture prevention treatment as important, while several noted that it may become less important near the end of life. Perceived benefits of fracture prevention treatment for persons with dementia included improved quality of life and maintaining independence. Although most indicated that bisphosphonates were well tolerated, gastrointestinal adverse effects, preference for fewer treatments, and dementia-related behaviors that interfere with medication administration may be reasons for deprescribing. CONCLUSION: Conversations grounded in caregiver experiences and "what matters most" may help optimize fracture prevention treatment for older adults with dementia.
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Demência , Desprescrições , Humanos , Masculino , Idoso , Feminino , Cuidadores , Difosfonatos/efeitos adversos , Qualidade de Vida , Demência/tratamento farmacológicoRESUMO
Acute Care for Elders (ACE) units reduce hospital-associated delirium, functional decline, and lengths of stay. However, establishing and sustaining such units have proven difficult. There are only 43 ACE units among the >3500 hospitals in the United States. This study describes an iterative quality improvement process, which allowed us to establish and sustain an ACE unit care model in a modern academic hospital. This continuous process was centered on implementing the key principles of the ACE unit model of care: patient-centered care assessments, medical care review, specialized prepared environment, early mobilization, physical therapy, and early planning for discharge to home. Quality of care and patient outcomes data for older adults admitted to our ACE unit includes mortality index (observed/expected) consistently <1 (FY22 = 0.86), 30-day readmission rate of <10% (FY22 9.31%), and length of stay index of ~1 (FY22 1.07). We describe how work on our ACE unit has led to hospital-wide initiatives, including dementia-friendly hospital certification. Our hope is that others can use this process to enhance the dissemination of the ACE unit model of care.
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Demência , Humanos , Atividades Cotidianas , Algoritmos , Demência/diagnóstico , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou maisRESUMO
BACKGROUND: Advance care planning (ACP) is a process that involves discussing a person's goals, values, and preferences; it is particularly important for persons living with dementia (PLWD) given that dementia is incurable and progressive. To ensure results that will impact real-world practices, ACP outcome measures must be psychometrically strong, meaningful to key partners, and pragmatic to collect. Therefore, we conducted a scoping review of outcome measures utilized in ACP randomized controlled clinical trials (RCTs) enrolling PLWD or their care partners and evaluated their pragmatic characteristics. METHODS: We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for peer-reviewed ACP RCTs enrolling PLWD or their care partners from 2011 to 2021. We abstracted characteristics of primary and secondary outcome measures, including pragmatic characteristics using an adapted Psychometric and Pragmatic Evidence Rating Scale and ACP outcome domains using the standardized ACP Outcome Framework (i.e., process, action, healthcare, or quality of care). RESULTS: We included 21 ACP RCTs. Trials included 103 outcome measures (39 primary and 64 secondary), of which 11% measured process, 14% measured action, 49% measured healthcare, and 26% measured quality of care. Twenty-four (23%) outcome measures were highly pragmatic, the majority of which (67%) reflected healthcare outcome measures. Sixty-one (59%) outcomes were assessed as highly relevant to PLWD or their care partners. Only 20% (n = 21) of outcome measures were embedded into clinical practice. Most (62%) RCTs were conducted in nursing homes, and 33% were focused PLWD with advanced stage disease. CONCLUSIONS: In RCTs testing ACP interventions to support PLWD, only 23% of outcome measures were highly pragmatic, and most of these measured healthcare utilizations. Outcome assessments were rarely integrated into the EHR during routine clinical care. New outcome measures that address the lived experience of PLWD and their care partners plus have high pragmatic characteristics are needed for embedded pragmatic clinical trials.
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Planejamento Antecipado de Cuidados , Demência , Humanos , Casas de Saúde , Avaliação de Resultados em Cuidados de Saúde , Aceitação pelo Paciente de Cuidados de Saúde , Demência/terapiaRESUMO
Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. Unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care.
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Demência , Cuidados Paliativos , Adulto , Humanos , Qualidade de Vida , Assistência de Longa Duração , CuidadoresRESUMO
BACKGROUND: Few guidelines address fracture prevention medication use in nursing home (NH) residents with dementia. OBJECTIVE: We sought to identify factors that influence prescriber decision-making for deprescribing of bisphosphonates for older NH residents with dementia. METHODS: We conducted 12 semi-structured interviews with prescribers who care for older adults with dementia in NHs. MAIN MEASURES: Interview prompts addressed experiences treating fractures, benefits, and harms of bisphosphonates, and experiences with deprescribing. Coding was guided by the social-ecological framework including patient-level (intrapersonal) and external (interpersonal, system, community, and policy) influences. RESULTS: Most prescribers were physicians (83%); 75% were female and 75% were White. Most (75%) spent less than half of their clinical effort in NHs and half were in the first decade of practice. Among patient-level influences, prescribers uniformly agreed that a prior bisphosphonate treatment course of several years, emergence of adverse effects, and changing goals of care or limited life expectancy were compelling reasons to deprescribe. External influences were frequently discussed as barriers to deprescribing. At the interpersonal level, prescribers noted that family/informal caregivers are diverse in their involvement in decision-making, and frequently concerned about the adverse effects of bisphosphonates, but perceive deprescribing as "withdrawing care." At the health system level, prescribers felt that frequent transitions make it difficult to determine duration of prior treatment and to implement deprescribing. At the policy level, prescribers highlighted the lack of guidelines addressing residents with limited mobility and dementia or criteria for deprescribing, including uncertainty in the setting of prior fractures and lack of bone densitometry in NHs. CONCLUSION: Systems-level barriers to evaluating bone densitometry and treatment history in NHs may impede person-centered decision-making for fracture prevention. Further research is needed to evaluate the residual benefits of bisphosphonates in medically complex residents with limited mobility and dementia to inform recommendations for deprescribing versus continued use.
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Demência , Desprescrições , Fraturas Ósseas , Médicos , Humanos , Feminino , Idoso , Masculino , Difosfonatos/efeitos adversos , Casas de Saúde , Fraturas Ósseas/prevenção & controle , Fraturas Ósseas/tratamento farmacológico , Demência/tratamento farmacológicoRESUMO
INTRODUCTION: Early access to specialty palliative care is associated with better quality of life, less intensive end-of-life treatment and improved outcomes for patients with advanced cancer. However, significant variation exists in implementation and integration of palliative care. This study compares the organizational, sociocultural, and clinical factors that support or hinder palliative care integration across three U.S. cancer centers using an in-depth mixed methods case study design and proposes a middle range theory to further characterize specialty palliative care integration. METHODS: Mixed methods data collection included document review, semi-structured interviews, direct clinical observation, and context data related to site characteristics and patient demographics. A mixed inductive and deductive approach and triangulation was used to analyze and compare sites' palliative care delivery models, organizational structures, social norms, and clinician beliefs and practices. RESULTS: Sites included an urban center in the Midwest and two in the Southeast. Data included 62 clinician and 27 leader interviews, observations of 410 inpatient and outpatient encounters and seven non-encounter-based meetings, and multiple documents. Two sites had high levels of "favorable" organizational influences for specialty palliative care integration, including screening, policies, and other structures facilitating integration of specialty palliative care into advanced cancer care. The third site lacked formal organizational policies and structures for specialty palliative care, had a small specialty palliative care team, espoused an organizational identity linked to treatment innovation, and demonstrated strong social norms for oncologist primacy in decision making. This combination led to low levels of specialty palliative care integration and greater reliance on individual clinicians to initiate palliative care. CONCLUSION: Integration of specialty palliative care services in advanced cancer care was associated with a complex interaction of organization-level factors, social norms, and individual clinician orientation. The resulting middle range theory suggests that formal structures and policies for specialty palliative care combined with supportive social norms are associated with greater palliative care integration in advanced cancer care, and less influence of individual clinician preferences or tendencies to continue treatment. These results suggest multi-faceted efforts at different levels, including social norms, may be needed to improve specialty palliative care integration for advanced cancer patients.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Cuidados Paliativos/métodos , Qualidade de Vida , Neoplasias/terapia , Atenção à SaúdeRESUMO
Importance: Overall, 1 in 3 family caregivers of patients who require intensive care unit (ICU) admission will experience significant posttraumatic stress symptoms (PTSSs), but little is known about how PTSSs evolve over time. Measuring PTSS trajectories could facilitate the development of targeted interventions to improve mental health outcomes for family caregivers of critically ill patients. Objective: To measure 6-month PTSS trajectories among caregivers of patients with acute cardiorespiratory failure. Design, Setting, and Participants: This prospective cohort study was conducted in the medical ICU of a large academic medical center among adult patients requiring (1) vasopressors for shock, (2) high-flow nasal cannula, (3) noninvasive positive pressure ventilation, or (4) invasive mechanical ventilation. Each patient was enrolled along with their primary caregiver, ie, the unpaid individual who provided the most physical, emotional, or financial support prior to ICU admission. Main Outcomes and Measures: Family caregiver PTSSs were assessed using the Impact of Events Scale-Revised within 48 hours of ICU admission, following ICU discharge, and 3 and 6 months after enrollment. Latent class growth analysis was used to measure PTSS trajectories. Preselected patient and caregiver characteristics measured at ICU admission were analyzed for association with trajectory membership. Six-month patient and caregiver outcomes were analyzed by caregiver trajectory. Results: Overall, 95 family caregivers were enrolled and provided baseline data; mean (SD) age was 54.2 (13.6) years, 72 (76%) were women, 22 (23%) were Black individuals, and 70 (74%) were White individuals. Three trajectories were identified: persistently low (51 caregivers [54%]), resolving (29 [31%]), and chronic (15 [16%]). Low caregiver resilience, prior caregiver trauma, high patient severity of illness, and good patient premorbid functional status were associated with the chronic trajectory. Caregivers with the chronic PTSS trajectory had worse 6-month health-related quality of life (mean [SD] total 36-item Short Form Survey score, persistently low trajectory: 104.7 [11.3]; resolving trajectory: 101.7 [10.4]; chronic trajectory: 84.0 [14.4]; P < .001) and reduced effectiveness at work (mean [SD] perceived effectiveness at work score, persistently low trajectory: 86.0 [24.2]; resolving trajectory: 59.1 [32.7]; chronic trajectory: 72.3 [18.4]; P = .009). Conclusions and Relevance: In this study, 3 distinct PTSS trajectories among ICU family caregivers were observed, with 16% of caregivers experiencing chronic PTSSs over the subsequent 6 months. Family caregivers with persistent PTSS had lower resilience, prior trauma, higher patient severity of illness, and higher baseline patient functional status compared with family caregivers with persistently low PTSS, with adverse effects on quality of life and work. Identifying these caregivers is an essential first step to develop interventions tailored to those with the greatest need for support.
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Cuidadores , Transtornos de Estresse Pós-Traumáticos , Adulto , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Cuidadores/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Qualidade de Vida , Estudos Prospectivos , Unidades de Terapia IntensivaRESUMO
BACKGROUND: Alzheimer's disease-related dementias (ADRD) are a leading cause of disability and death. In late-stage ADRD most people prioritize comfort, but care to achieve comfort is rare. Comfort Matters combines palliative and geriatric care practices for nursing home dementia care, but in-person training reaches few sites. To facilitate dissemination, we developed Comfort First, a web-based training toolkit with video demonstration of Comfort Matters practices. METHODS: We developed and pilot-tested Comfort First (NIA Intervention Stage 1). Stakeholder advisors representing nursing home residents, caregiver, and clinical perspectives guided development. Professional videographers filmed Comfort Matters staff to illustrate comfort-focused dementia care skills. Video training modules, supported by an implementation manual, address Understanding the Person with Dementia, Promoting Quality of Life and Comfort, Working as a Team, Responding When People with Dementia are Distressed, Addressing Pain, and Making Comfort First a Reality. We then delivered Comfort First to 3 nursing homes. Implementation and outcome evaluation assessed the number and clinically diverse roles of trained staff and post-test knowledge. RESULTS: Nursing home staff roles (n = 146) were diverse: certified nursing assistants (40%), nurses (19%), administrators (11%), activities staff (6%), therapy staff (5%) and other roles. Individual participants' knowledge scores ranged from 50-100%; however average post-test knowledge scores were high, ranging from 90% (Addressing Pain) to 99% (Promoting Quality of Life and Comfort, Making Comfort First a Reality). CONCLUSIONS: The Comfort First web-based training toolkit combines best practices in palliative care and geriatric care for ADRD, using video demonstrations to support broader dissemination of these skills. Initial evaluation demonstrates acceptability and knowledge uptake for staff in diverse clinical roles; future research should include evaluation of practice change. Consistent with the intent of its public funding, Comfort First will be widely disseminated at a minimal cost.
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Doença de Alzheimer , Demência , Humanos , Idoso , Cuidados Paliativos , Demência/terapia , Qualidade de Vida , Dor , InternetRESUMO
Pragmatic clinical trials (PCTs) emphasize real-world effectiveness methodology to address the limitations of results from explanatory randomized clinical trials (RCTs), which often fail to translate to real-world medical practice. An inherent tension in the conduct of PCTs is that the research must impose a minimal burden on patients and health care institutions. PCTs prioritize outcome measures from existing data sources to minimize data collection burden; however, a lack of patient-reported outcomes may result in gaps in safety for vulnerable populations, such as those with serious illnesses. One proposed standard for judging the readiness of a study for a pragmatic trial is a ranking system that assigns PCTs a lower rank if they impose additional data collection burdens. However, this results in the wide use of measures of health care utilization and costs while patient experience measures, which could capture adverse unintended consequences, are omitted. In this article, we make the case for a risk-based approach to imposing additional data collection in PCTs to capture potential safety and patient experience outcomes, using examples from "real life" implemented interventions to improve end-of-life care through the Liverpool Pathway and through the implementation of Physician Orders for Life Sustaining Treatment (POLST) in Oregon.