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2.
JAMA Intern Med ; 184(1): 81-91, 2024 Jan 01.
Artículo en Inglés | MEDLINE | ID: mdl-38048097

RESUMEN

Importance: Most older adults living with dementia ultimately need nursing home level of care (NHLOC). Objective: To develop models to predict need for NHLOC among older adults with probable dementia using self-report and proxy reports to aid patients and family with planning and care management. Design, Setting, and Participants: This prognostic study included data from 1998 to 2016 from the Health and Retirement Study (development cohort) and from 2011 to 2019 from the National Health and Aging Trends Study (validation cohort). Participants were community-dwelling adults 65 years and older with probable dementia. Data analysis was conducted between January 2022 and October 2023. Exposures: Candidate predictors included demographics, behavioral/health factors, functional measures, and chronic conditions. Main Outcomes and Measures: The primary outcome was need for NHLOC defined as (1) 3 or more activities of daily living (ADL) dependencies, (2) 2 or more ADL dependencies and presence of wandering/need for supervision, or (3) needing help with eating. A Weibull survival model incorporating interval censoring and competing risk of death was used. Imputation-stable variable selection was used to develop 2 models: one using proxy responses and another using self-responses. Model performance was assessed by discrimination (integrated area under the receiver operating characteristic curve [iAUC]) and calibration (calibration plots). Results: Of 3327 participants with probable dementia in the Health and Retirement Study, the mean (SD) age was 82.4 (7.4) years and 2301 (survey-weighted 70%) were female. At the end of follow-up, 2107 participants (63.3%) were classified as needing NHLOC. Predictors for both final models included age, baseline ADL and instrumental ADL dependencies, and driving status. The proxy model added body mass index and falls history. The self-respondent model added female sex, incontinence, and date recall. Optimism-corrected iAUC after bootstrap internal validation was 0.72 (95% CI, 0.70-0.75) in the proxy model and 0.64 (95% CI, 0.62-0.66) in the self-respondent model. On external validation in the National Health and Aging Trends Study (n = 1712), iAUC in the proxy and self-respondent models was 0.66 (95% CI, 0.61-0.70) and 0.64 (95% CI, 0.62-0.67), respectively. There was excellent calibration across the range of predicted risk. Conclusions and Relevance: This prognostic study showed that relatively simple models using self-report or proxy responses can predict need for NHLOC in community-dwelling older adults with probable dementia with moderate discrimination and excellent calibration. These estimates may help guide discussions with patients and families in future care planning.


Asunto(s)
Demencia , Vida Independiente , Humanos , Femenino , Anciano , Anciano de 80 o más Años , Masculino , Actividades Cotidianas , Factores de Riesgo , Casas de Salud , Demencia/epidemiología
3.
J Pain Symptom Manage ; 66(3): e399-e426, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37244527

RESUMEN

OBJECTIVE: Distress at the end of life in the intensive care unit (ICU) is common. We reviewed the evidence guiding symptom assessment, withdrawal of mechanical ventilation (WMV) process, support for the ICU team, and symptom management among adults, and specifically older adults, at end of life in the ICU. SETTING AND DESIGN: Systematic search of published literature (January 1990-December 2021) pertaining to WMV at end of life among adults in the ICU setting using PubMed, Embase, and Web of Science. Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines were followed. PARTICIPANTS: Adults (age 18 and over) undergoing WMV in the ICU. MEASUREMENTS: Study quality was assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. RESULTS: Out of 574 articles screened, 130 underwent full text review, and 74 were reviewed and assessed for quality. The highest quality studies pertained to use of validated symptom scales during WMV. Studies of the WMV process itself were generally lower quality. Support for the ICU team best occurs via structured communication and social supports. Dyspnea is the most distressing symptom, and while high quality evidence supports the use of opiates, there is limited evidence to guide implementation of their use for specific patients. CONCLUSION: High quality studies support some practices in palliative WMV, while gaps in evidence remain for the WMV process, supporting the ICU team, and medical management of distress. Future studies should rigorously compare WMV processes and symptom management to reduce distress at end of life.


Asunto(s)
Unidades de Cuidados Intensivos , Respiración Artificial , Humanos , Anciano , Adolescente , Disnea/etiología , Comunicación , Muerte
4.
J Hosp Palliat Nurs ; 25(5): 263-270, 2023 10 01.
Artículo en Inglés | MEDLINE | ID: mdl-37235711

RESUMEN

Decision making for nursing home (NH) residents with Alzheimer disease and related dementias often involves input from multiple family members and NH staff to address goals of care at the end of life. Using data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life research study, a secondary analysis of qualitative data was conducted involving interviews of 144 NH staff and 44 proxies in 14 NHs to examine the perspectives of NH staff and proxies for NH residents with Alzheimer disease and related dementias on the involvement of multiple family members in decision making about end-of-life care decisions. Interviews took place between 2018 and 2021. Nursing home staff and proxies had differing perspectives of the involvement of multiple family members in decision making, with NH staff primarily viewing families as a source of conflict, whereas proxies viewed families as a source of support. Nursing home staff also had differing opinions of their role with families; some attempted to ameliorate conflict, and some did not get involved. Some NH staff felt that Black families had more conflict than White families, indicating unacceptable bias and stereotyping of Black families by NH staff. These findings suggest training and education is needed for NH staff to facilitate better communication with families and to support proxies in end-of-life decision making to address goals of care for NH residents with Alzheimer disease and related dementias.


Asunto(s)
Enfermedad de Alzheimer , Demencia , Humanos , Enfermedad de Alzheimer/complicaciones , Demencia/complicaciones , Toma de Decisiones , Casas de Salud , Familia , Muerte
5.
J Am Geriatr Soc ; 71(6): 1759-1772, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36856071

RESUMEN

BACKGROUND: Regional, facility, and racial variability in intensity of care provided to nursing home (NH) residents with advanced dementia is poorly understood. MATERIALS AND METHODS: Assessment of Disparities and Variation for Alzheimer's disease NH Care at End of life (ADVANCE) is a multisite qualitative study of 14 NHs from four hospital referral regions providing varied intensity of advanced dementia care based on tube-feeding and hospital transfer rates. This report explored the perceptions and experiences of Black and White proxies (N = 44) of residents with advanced dementia to elucidate factors driving these variations. Framework analyses revealed themes and subthemes within the following a priori domains: understanding of advanced dementia and care decisions, preferences related to end-of-life care, advance care planning, decision-making about managing feeding problems and acute illness, communication and trust in NH providers, support, and spirituality in decision-making. Matrix analyses explored similarities/differences by proxy race. Data were collected from June 1, 2018 to July 31, 2021. RESULTS: Among 44 proxies interviewed, 19 (43.1%) were Black, 36 (81.8%) were female, and 26 (59.0%) were adult children of residents. In facilities with the lowest intensity of care, Black and White proxies consistently reported having had previous conversations with residents about wishes for end-of-life care and generally better communication with providers. Black proxies held numerous misconceptions about the clinical course of advanced dementia and effectiveness of treatment options, notably tube-feeding and cardiopulmonary resuscitation. Black and White proxies described mistrust of NH staff but did so towards different staffing roles. Religious and spiritual beliefs commonly thought to underlie preferences for more intense care among Black residents, were rarely, but equally mentioned by race. CONCLUSIONS: This report refuted commonly held assumptions about religiosity and spirituality as drivers of racial variations in advanced dementia care and revealed several actionable facility-level factors, which may help reduce these variations.


Asunto(s)
Planificación Anticipada de Atención , Demencia , Cuidado Terminal , Humanos , Femenino , Masculino , Demencia/terapia , Directivas Anticipadas , Casas de Salud , Apoderado
6.
Alzheimers Dement (Amst) ; 15(1): e12392, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36777091

RESUMEN

Introduction: To improve dementia care delivery for persons across all backgrounds, it is imperative that health equity is integrated into pragmatic trials. Methods: We reviewed 62 pragmatic trials of people with dementia published 2014 to 2019. We assessed health equity in the objectives; design, conduct, analysis; and reporting using PROGRESS-Plus which stands for Place of residence, Race/ethnicity, Occupation, Gender/sex, Religion, Education, Socioeconomic status, Social capital, and other factors such as age and disability. Results: Two (3.2%) trials incorporated equity considerations into their objectives; nine (14.5%) engaged with communities; 4 (6.5%) described steps to increase enrollment from equity-relevant groups. Almost all trials (59, 95.2%) assessed baseline balance for at least one PROGRESS-Plus characteristic, but only 10 (16.1%) presented subgroup analyses across such characteristics. Differential recruitment, attrition, implementation, adherence, and applicability across PROGRESS-Plus were seldom discussed. Discussion: Ongoing and future pragmatic trials should more rigorously integrate equity considerations in their design, conduct, and reporting. Highlights: Few pragmatic trials are explicitly designed to inform equity-relevant objectives.Few pragmatic trials take steps to increase enrollment from equity-relevant groups.Disaggregated results across equity-relevant groups are seldom reported.Adherence to existing tools (e.g., IMPACT Best Practices, CONSORT-Equity) is key.

7.
J Pain Symptom Manage ; 65(2): e155-e163, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36423803

RESUMEN

Advance care planning (ACP) is an important part of comprehensive care for persons living with dementia (PLWD). While many trials have established the efficacy of ACP in improving end-of-life communication and documentation of care preferences, there remains a gap in clinical usage. Embedded pragmatic clinical trials (ePCTs) may facilitate the uptake of evidence-based care into existing healthcare by deploying efficacious ACP interventions into real-world settings. However rigorous conduct of ePCTs of ACP for PLWD presents several unique methodological considerations. Here we describe a framework for the construction of these research studies, with a focus on distinguishing between the target of study: the PLWD, their care partners, or both. We outline specific considerations at each step of the research study process including 1) participant identification/eligibility, 2) participant recruitment/enrollment, 3) intervention implementation, and 4) outcome selection/ascertainment. These considerations are weighed in further detail by describing the approaches from three published trials. Specifically, we consider how potential challenges were overcome by tradeoffs in study design. Finally, we offer directions for future growth to advance ePCTs for ACP among PLWD and catalyze future research.


Asunto(s)
Planificación Anticipada de Atención , Demencia , Humanos , Comunicación , Demencia/terapia , Documentación , Ensayos Clínicos Pragmáticos como Asunto
8.
Neurohospitalist ; 13(1): 61-68, 2023 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-36531837

RESUMEN

Background: Donation after circulatory death (DCD) is becoming increasingly common, yet little is known about the way potential donors receive end-of-life care. Purpose: The aims of this systematic review are to describe the current practice in end-of-life care for potential donors and identify metrics that are being used to assess discomfort among these patients. Research design and Study Sample: This review encompasses published literature between June 1, 2000 and June 31, 2020 of end-of-life care received by potential DCD patients. The population of interest was defined as patients eligible for Maastracht classification III donation after circulatory death for a solid organ transplantation. Outcomes examined included: analgesic or palliative protocols, and surrogates of discomfort (eg dyspnea, agitation). Results: Among 141 unique articles, 27 studies were included for full review. The primary reason for exclusion was lack of protocol description, or lack of reporting on analgesic medications. No primary research studies specifically examined distress in the DCD eligible population. Numerous professional guidelines were identified. Surveys of critical care practitioners identified concerns regarding the impact of symptom management on hastening the dying process in the DCD population as a potential barrier to end-of-life palliative treatment. Conclusions: There is a paucity of empirical evidence for end-of-life symptom assessment and management for DCD patients. Key evidence gaps identified for DCD include the need for: i) a multidisciplinary structure of treatment teams and preferred environment for DCD, ii) objective tools for monitoring of distress in this patient population, and iii) evidence guiding the administration of analgesic medications following withdrawal of life sustaining therapy.

10.
J Am Geriatr Soc ; 71(2): 588-598, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36435175

RESUMEN

Cluster randomized trials (CRT) of non-pharmacological interventions are an important means of improving the quality of care and quality of life of people living with dementia (PLWD) in long-term care (LTC) homes. PLWD in LTC homes are, however, vulnerable in manifold ways. Therefore, researchers require guidance to ensure that the rights and welfare of PLWD are protected in the course of this valuable research. In this article, we introduce a framework for identifying vulnerabilities in randomized trials and apply it to three CRTs involving PLWD in LTC homes. CRTs may render PLWD in LTC homes vulnerable to three autonomy wrongs: inadequately informed consent, inadequately voluntary consent, and invasions of privacy; two welfare wrongs: risks of therapeutic procedure exceed potential benefits, and excessive risk of non-therapeutic procedures; and one justice wrong: unjust impact of research activities on care. We then discuss appropriate, feasible additional protections that can be implemented to mitigate vulnerability while preserving the scientific validity of the CRT. Corresponding additional protections that can be feasibly implemented include capacity assessments, substitute decision-makers, assent, insulation from LTC home employees during the consent process, patient advocates, utilizing LTC home employees for data collection, stakeholder engagement, additional supervision during study procedures, using caregivers to complete questionnaires by proxy, and gatekeeper permission. Reassuringly, many of these additional protections promote, rather than imperil, the scientific validity of these trials.


Asunto(s)
Demencia , Cuidados a Largo Plazo , Humanos , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Encuestas y Cuestionarios , Demencia/terapia , Análisis Ético
11.
JAMA Intern Med ; 182(11): 1161-1170, 2022 11 01.
Artículo en Inglés | MEDLINE | ID: mdl-36156062

RESUMEN

Importance: Estimating mortality risk in older adults with dementia is important for guiding decisions such as cancer screening, treatment of new and chronic medical conditions, and advance care planning. Objective: To develop and externally validate a mortality prediction model in community-dwelling older adults with dementia. Design, Setting, and Participants: This cohort study included community-dwelling participants (aged ≥65 years) in the Health and Retirement Study (HRS) from 1998 to 2016 (derivation cohort) and National Health and Aging Trends Study (NHATS) from 2011 to 2019 (validation cohort). Exposures: Candidate predictors included demographics, behavioral/health factors, functional measures (eg, activities of daily living [ADL] and instrumental activities of daily living [IADL]), and chronic conditions. Main Outcomes and Measures: The primary outcome was time to all-cause death. We used Cox proportional hazards regression with backward selection and multiple imputation for model development. Model performance was assessed by discrimination (integrated area under the receiver operating characteristic curve [iAUC]) and calibration (plots of predicted and observed mortality). Results: Of 4267 participants with probable dementia in HRS, the mean (SD) age was 82.2 (7.6) years, 2930 (survey-weighted 69.4%) were female, and 785 (survey-weighted 12.1%) identified as Black. Median (IQR) follow-up time was 3.9 (2.0-6.8) years, and 3466 (81.2%) participants died by end of follow-up. The final model included age, sex, body mass index, smoking status, ADL dependency count, IADL difficulty count, difficulty walking several blocks, participation in vigorous physical activity, and chronic conditions (cancer, heart disease, diabetes, lung disease). The optimism-corrected iAUC after bootstrap internal validation was 0.76 (95% CI, 0.75-0.76) with time-specific AUC of 0.73 (95% CI, 0.70-0.75) at 1 year, 0.75 (95% CI, 0.73-0.77) at 5 years, and 0.84 (95% CI, 0.82-0.85) at 10 years. On external validation in NHATS (n = 2404), AUC was 0.73 (95% CI, 0.70-0.76) at 1 year and 0.74 (95% CI, 0.71-0.76) at 5 years. Calibration plots suggested good calibration across the range of predicted risk from 1 to 10 years. Conclusions and Relevance: We developed and externally validated a mortality prediction model in community-dwelling older adults with dementia that showed good discrimination and calibration. The mortality risk estimates may help guide discussions regarding treatment decisions and advance care planning.


Asunto(s)
Demencia , Vida Independiente , Humanos , Femenino , Anciano , Masculino , Estudios de Cohortes , Actividades Cotidianas , Enfermedad Crónica
12.
Gerontol Geriatr Med ; 8: 23337214221116978, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35958035

RESUMEN

Functional status and quality of life are not routinely assessed after skilled nursing facility (SNF) discharge. We determined feasibility of measuring frailty among adults ≥65 years admitted to SNF after hospitalization, and post-discharge outcomes. We calculated a frailty index (non-frail [≤0.25], mild frailty [0.26-0.35], moderate [0.36-0.45], and severe [>0.45]). After SNF discharge, we conducted serial telephone interviews measuring ability to perform functional activities and Patient Reported Outcome Measurement Information System (PROMIS) scores. Overall of 68 screened patients, 42 were eligible, and 24 (57.1%) eligible patients were enrolled. Of these, 5 (20.8%) were admitted after elective hospitalizations, 17 (70.8%) were female, and 11 (45.8%) had moderate-to-severe frailty. Frailty was measured in all participants in a mean 32.1 minutes. At 90 days, a total of three participants died, and two were lost to follow-up. Post-discharge functional status varied by frailty, with moderate-to-severe frailty having persistent impairment and lower PROMIS scores (worse quality of life) compared to those with no or mild frailty (38.2 [13.7] vs. 47.3 [8.1] p = .04). Measuring frailty and quality of life in older patients admitted to SNF is feasible. Furthermore, measuring frailty may help identify those at particularly high risk of poor recovery and lower quality of life after discharge.

13.
Clin Trials ; 19(6): 623-635, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-35815777

RESUMEN

BACKGROUND/AIMS: A significant number of people with Alzheimer's disease or related dementia diagnoses will be cared for in nursing homes near the end of life. Advance care planning (ACP), the process of eliciting and documenting patient-centered preferences for care, is considered essential to providing high quality care for this population. Nursing homes are currently required by regulations to offer ACP to residents and families, but no training requirements exist for nursing home staff, and approaches to fulfilling this regulatory and ethical responsibility vary. As a result, residents may receive care inconsistent with their goals, such as unwanted hospitalizations. Pragmatic trials offer a way to develop and test ACP in real-world settings to increase the likelihood of adoption of sustainable best practices. METHODS: The "Aligning Patient Preferences-a Role Offering Alzheimer's patients, Caregivers, and Healthcare Providers Education and Support (APPROACHES)" project is designed to pragmatically test and evaluate a staff-led program in 137 nursing homes (68 = intervention, 69 = control) owned by two nursing home corporations. Existing nursing home staff receive standardized training and implement the ACP Specialist program under the supervision of a corporate lead. The primary trial outcome is the annual rate of hospital transfers (admissions and emergency department visits). Consistent with the spirit of a pragmatic trial, study outcomes rely on data already collected for quality improvement, clinical, or billing purposes. Configurational analysis will also be performed to identify conditions associated with implementation. RESULTS: Partnerships with large corporate companies enable the APPROACHES trial to rely on corporate infrastructure to roll out the intervention, with support for a corporate implementation lead who is charged with the initial introduction and ongoing support for nursing home-based ACP Specialists. These internal champions connect the project with other company priorities and use strategies familiar to nursing home leaders for the initiation of other programs. Standardized data collection across nursing homes also supports the conduct of pragmatic trials in this setting. DISCUSSION: Many interventions to improve care in nursing homes have failed to demonstrate an impact or, if successful, maintain an impact over time. Pragmatic trials, designed to test interventions in real-world contexts that are evaluated through existing data sources collected routinely as part of clinical care, are well suited for the nursing home environment. A robust program that increases access to ACP for nursing home residents has the potential to increase goal-concordant care and is expected to reduce hospital transfers. If successful, the ACP Specialist Program will be primed for rapid translation into nursing home practice to reduce unwanted, burdensome hospitalizations and improve the quality of care for residents with dementia.


Asunto(s)
Planificación Anticipada de Atención , Enfermedad de Alzheimer , Humanos , Casas de Salud , Instituciones de Cuidados Especializados de Enfermería , Prioridad del Paciente , Enfermedad de Alzheimer/terapia
14.
J Gerontol B Psychol Sci Soc Sci ; 77(10): 1938-1946, 2022 10 06.
Artículo en Inglés | MEDLINE | ID: mdl-35803591

RESUMEN

OBJECTIVES: Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) is a multisite qualitative study of regionally diverse Nursing homes (NHs; N = 14) providing varied intensity of advanced dementia care. ADVANCE-C explored the experiences of NH staff and proxies during the COVID-19 pandemic. METHODS: Data collection occurred in five of the ADVANCE facilities located in Georgia (N = 3) and New York (N = 2). Semistructured qualitative interviews with NH staff (N = 38) and proxies of advanced dementia residents (N = 7) were conducted. Framework analyses explored five staff domains: care processes, decision making, organizational resources, vaccinations, and personal experience, and five proxy domains: connecting with residents, NH response, communicating with NH, decision making, and personal impact of the pandemic. RESULTS: Staff mentioned difficulties implementing infection control policies specifically for advanced dementia residents. Staff reported trust between the facility and proxies as critical in making decisions during the pandemic. All staff participants spoke about "coming together" to address persistent staffing shortages. Proxies described their role as an "emotional rollercoaster," emphasizing how hard it was being separate from their loved ones. The accommodations made for NH residents were not beneficial for those with advanced dementia. The majority of proxies felt NH staff were doing their best and expressed deep appreciation for their care. DISCUSSION: Caring for advanced dementia residents during the COVID-19 pandemic had unique challenges for both staff and proxies. Strategies for similar future crises should strive to balance best practices to contain the virus while maintaining family connections and person-centered care.


Asunto(s)
COVID-19 , Demencia , COVID-19/epidemiología , Toma de Decisiones , Demencia/terapia , Humanos , Casas de Salud , Pandemias
15.
J Palliat Med ; 25(12): 1795-1801, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-35675641

RESUMEN

Background: Medicare alternative payment models were created to improve health care value by controlling costs and improving care quality. Objective: To determine if prevalence of pain affecting quality of life (QoL) differs by Medicare payment model among nursing home (NH) decedents with dementia at the end of life. Setting/Subjects: NH decedents in 2017/2018 in the United States with dementia who self-reported pain on a Minimum Data Set assessment in the last 30 days of life. Measurements: Main outcome was pain impacting QoL (i.e., affecting day-to-day activities or sleep). Multivariable logistic analysis examined the association between payment model (traditional Medicare [TM], Medicare Advantage [MA], or accountable care organizations [ACOs]) and pain impacting QoL after controlling for potential confounders. Results: There were 115,757 NH residents with dementia who self-reported pain in the last 30 days of life. Of those, 17.8% (n = 20,585) reported having pain the last five days from assessment, which varied by Medicare payment model (17.7% in TM, 17.5% in MA, and 19.1% in ACOs; p < 0.001). Among decedents reporting pain, 23.6% of ACO decedents reported pain affecting QoL compared to 22.1% in MA and 21.6% in TM (p = 0.09). After adjustment, decedents in ACOs compared to TM had greater predicted probability of pain affecting QoL (absolute marginal difference 0.017, 95% CI 0.00-0.035, p = 0.05), and persons in MA did not differ from persons in TM (absolute marginal difference 0.005, 95% CI -0.008 to 0.019, p = 0.41). Conclusions and Implications: Among dementia decedents dying with pain, pain impacted QoL in more than one in five persons. All payment models can improve pain management.


Asunto(s)
Demencia , Calidad de Vida , Anciano , Estados Unidos , Humanos , Medicare , Casas de Salud , Dolor
17.
Alzheimers Dement (N Y) ; 8(1): e12287, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35509502

RESUMEN

Introduction: This review aims to describe the landscape of pragmatic randomized controlled trials (RCTs) in the context of Alzheimer's disease (AD) and related dementias with respect to ethical considerations. Methods: Searches of MEDLINE were performed from January 2014 until April 2019. Extracted information included: trial setting, interventions, data collection, study population, and ethical protections (including ethics approvals, capacity assessment, and informed consent). Results: We identified 62 eligible reports. More than two-thirds (69%) included caregivers or health-care professionals as research participants. Fifty-eight (94%) explicitly identified at least one vulnerable group. Two studies did not report ethics approval. Of 57 studies in which patients were participants, 55 (96%) reported that consent was obtained but in 37 studies (67%) no mention was made regarding assessment of the patients' capacity to consent to research participation. Discussion: Few studies reported protections implemented when vulnerable participants were included. Shortcomings remain when reporting consent approaches and capacity assessment.

18.
Geriatr Nurs ; 45: 230-234, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35361514

RESUMEN

An effective clinical research effort in nursing homes to address prevention and treatment of COVID-19 faced overwhelming challenges. Under the Health Care Systems Research Network-Older Americans Independence Centers AGING Initiative, a multidisciplinary Stakeholder Advisory Panel was convened to develop recommendations to improve the capability of the clinical research enterprise in US nursing homes. The Panel considered the nursing home as a setting for clinical trials, reviewed the current state of clinical trials in nursing homes, and ultimately developed recommendations for the establishment of a nursing home clinical trials research network that would be centrally supported and administered. This report summarizes the Panel's recommendations, which were developed in alignment with the following core principles: build on available research infrastructure where appropriate; leverage existing productive partnerships of researchers with groups of nursing homes and nursing home corporations; encompass both efficacy and effectiveness clinical trials; be responsive to a broad range of stakeholders including nursing home residents and their care partners; be relevant to an expansive range of clinical and health care delivery research questions; be able to pivot as necessary to changing research priorities and circumstances; create a pathway for industry-sponsored research as appropriate; invest in strategies to increase diversity in study populations and the research workforce; and foster the development of the next generation of nursing home researchers.


Asunto(s)
COVID-19 , Anciano , Envejecimiento , COVID-19/prevención & control , Ensayos Clínicos como Asunto , Atención a la Salud , Humanos , Casas de Salud , Estados Unidos
19.
BMC Geriatr ; 22(1): 298, 2022 04 08.
Artículo en Inglés | MEDLINE | ID: mdl-35392827

RESUMEN

BACKGROUND: The purpose of the study is to evaluate the effect of an Advance Care Planning (ACP) Video Program on documented Do-Not-Hospitalize (DNH) orders among nursing home (NH) residents with advanced illness. METHODS: Secondary analysis on a subset of NHs enrolled in a cluster-randomized controlled trial (41 NHs in treatment arm implemented the ACP Video Program: 69 NHs in control arm employed usual ACP practices). Participants included long (> 100 days) and short (≤ 100 days) stay residents with advanced illness (advanced dementia or cardiopulmonary disease (chronic obstructive pulmonary disease or congestive heart failure)) in NHs from March 1, 2016 to May 31, 2018 without a documented Do-Not-Hospitalize (DNH) order at baseline. Logistic regression with covariate adjustments was used to estimate the impact of the resident being in a treatment versus control NH on: the proportion of residents with new DNH orders during follow-up; and the proportion of residents with any hospitalization during follow-up. Clustering at the facility-level was addressed using hierarchical models. RESULTS: The cohort included 6,117 residents with advanced illness (mean age (SD) = 82.8 (8.4) years, 65% female). Among long-stay residents (n = 3,902), 9.3% (SE, 2.2; 95% CI 5.0-13.6) and 4.2% (SE, 1.1; 95% CI 2.1-6.3) acquired a new DNH order in the treatment and control arms, respectively (average marginal effect, (AME) 5.0; SE, 2.4; 95% CI, 0.3-9.8). Among short-stay residents with advanced illness (n = 2,215), 8.0% (SE, 1.6; 95% CI 4.6-11.3) and 3.5% (SE 1.0; 95% CI 1.5-5.5) acquired a new DNH order in the treatment and control arms, respectively (AME 4.4; SE, 2.0; 95% CI, 0.5-8.3). Proportion of residents with any hospitalizations did not differ between arms in either cohort. CONCLUSIONS: Compared to usual care, an ACP Video Program intervention increased documented DNH orders among NH residents with advanced disease but did not significantly reduce hospitalizations. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02612688 .


Asunto(s)
Planificación Anticipada de Atención , Casas de Salud , Anciano de 80 o más Años , Femenino , Hospitalización , Humanos , Masculino
20.
Contemp Clin Trials Commun ; 27: 100913, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35369403

RESUMEN

Background: The Trial to Reduce Antimicrobial use In Nursing home residents with Alzheimer's disease and other Dementias (TRAIN-AD) was a cluster randomized clinical trial evaluating a multicomponent program to improve infection management among residents with advanced dementia. This report examines facility and provider characteristics associated with greater adherence to training components of the TRAIN-AD intervention. Methods: Logistic regression was used to identify facility and provider characteristics associated with: 1. Training seminar attendance, 2. Online course completion, and 3. Overall adherence, defined as participation in neither seminar nor course, either seminar or course, or both seminar and course. Results: Among 380 participating providers (nurses, N = 298; prescribing providers, N = 82) almost all (93%) participated in at least one training activity. Being a nurse was associated with higher likelihood of any seminar attendance (adjusted odds ratio (AOR) 5.37; 95% confidence interval (CI), 2.80-10.90). Providers who were in facilities when implementation begun (AOR, 3.01; 95% CI, 1.34-6.78) and in facilities with better quality ratings (AOR, 2.70; 95% CI, 1.59-4.57) were more likely to complete the online course. Prevalent participation (AOR, 2.01; 95% CI, 1.02-3.96) and higher facility quality (AOR, 2.44; 95% CI, 1.27-4.66) were also significantly associated with greater adherence to either seminar or online course. Conclusion: TRAIN-AD demonstrates feasibility in achieving high participation among nursing home providers in intervention training activities. Findings also suggest opportunities to maximize adherence, such as enhancing training efforts in lower quality facilities and targeting of providers who join the facility after implementation start-up.

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