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1.
JAMA Netw Open ; 7(6): e2415452, 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38888926

RESUMO

This cohort study evaluates the addition of a patient-centered intervention to an advance care planning process for older surgical patients.


Assuntos
Planejamento Antecipado de Cuidados , Navegação de Pacientes , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Assistência Perioperatória/métodos , Adulto , Idoso
2.
J Gen Intern Med ; 2024 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-38941059

RESUMO

BACKGROUND: Electronic consultations (eConsults) enable asynchronous consultation between primary care providers (PCPs) and specialists. eConsults have been used successfully to manage a variety of conditions and have the potential to help PCPs manage polypharmacy and promote deprescribing. OBJECTIVE: To elicit clinician perspectives on barriers/facilitators of using eConsults for deprescribing among older adults within a university health network. DESIGN: Semi-structured interviews. PARTICIPANTS: PCPs, geriatricians, and pharmacists. APPROACH: We used the COM-B (Capability, Opportunity, Motivation, and Behavior) model to structure the interview guide and qualitative analysis methods to identify barriers/facilitators of (1) deprescribing and (2) use of eConsults for deprescribing. KEY RESULTS: Of 28 participants, 19 were PCPs (13 physicians, 4 residents, 2 nurse practitioners), 7 were geriatricians, and 2 were pharmacists. Barriers and facilitators to deprescribing: PCPs considered deprescribing important but identified myriad barriers (e.g., time constraints, fragmented clinical care, lack of pharmacist integration, and patient/family resistance). Use of eConsults for deprescribing: Both PCPs and geriatricians highlighted the limits of contextual information available through electronic health record (vs. face-to-face) to render specific and actionable eConsults (e.g., knowledge of prior deprescribing attempts). Participants from all groups expressed interest in a targeted process whereby eConsults could be offered for select patients based on key factors (e.g., polypharmacy or certain comorbidities) and accepted or declined by PCPs, with pithy recommendations delivered in a timely manner relative to patient appointments. This was encapsulated by one PCP: "they need to be crisp and to the point to be helpful, with specific suggestions of something that could be discontinued or switched…not, 'hey, did you know your patient is on over 12 medicines?'". CONCLUSIONS: Clinicians identified multifaceted factors influencing the utility of eConsults for deprescribing among older adults in primary care. Deprescribing eConsult interventions should be timely, actionable, and mindful of limitations of electronic chart review.

3.
Alzheimers Dement (N Y) ; 10(2): e12467, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38698931

RESUMO

INTRODUCTION: There are few widely-available, evidence-based options to support quality of life (QOL) for people living with Alzheimer's disease and related dementias. METHODS: We performed a randomized, controlled trial with a Waitlist control group to determine whether an online, livestream, mind-body, group movement program (Moving Together, 1 hour, 2 days/week, 12 weeks) improves QOL in people with cognitive impairment (PWCI) or care partners (CPs) and explore mechanisms of action. The primary outcome for both participants was self-reported QOL. Secondary outcomes and potential mediators included mobility, isolation, well-being, cognitive function, and sleep in PWCI and burden, positive emotions, caregiver self-efficacy, stress management, and sleep in CPs. Blinded assessors collected outcome data at baseline, 12, and 24 weeks. We assessed adverse events including falls through monthly check-in surveys and collected qualitative data through evaluation surveys. Intention-to-treat analyses used linear mixed models to compare mean change over time between groups and calculated standardized effect sizes (ESs). RESULTS: Ninety-seven dyads enrolled (PWCI: age 76 ± 11 years, 43% female, 80% non-Hispanic White; CPs: age 66 ± 12 years, 78% female, 71% non-Hispanic White); 15% withdrew before 12 weeks and 22% before 24 weeks. PWCI self-reported significantly better QOL from baseline to 12 weeks in the Moving Together group compared to the Waitlist group (ES = 0.474, p = 0.048) and CPs self-reported improved ability to manage stress (ES = 0.484, p = 0.021). Improvements in participant self-reported QOL were mediated by improvements in their self-reported well-being and CP-reported ability to manage stress. Results were similar when the Waitlist group participated in the program (QOL ES = 0.663, p = 0.006; stress management ES = 0.742, p = 0.002) and were supported by qualitative data. Exploratory analyses suggested possible fall reduction in PWCI. There were no study-related serious adverse events. DISCUSSION: Online programs such as Moving Together offer a scalable strategy for supporting high QOL for PWCI and helping CPs manage stress. TRIAL REGISTRATION: ClinicalTrials.gov NCT04621448. Highlights: The approval of new medications that slow cognitive decline in people living with Alzheimer's disease and related disorders (ADRD) has raised hope and excitement. However, these medications do not appear to impact quality of life, which is often considered by patients and care partners to be the most important outcome.In this randomized clinical trial, we found that an evidence-based, online, livestream, mind-body, group movement program significantly and meaningfully improves self-rated quality of life in people with ADRD and helps care partners manage stress. Mediation analyses revealed that the key drivers of improvements in participants' quality of life were improvements in their feelings of well-being and care partners' ability to manage stress. Exploratory analyses also suggested a 30% reduction in falls.These results are important because they suggest that an online program, which is available now and can be performed by people from the comfort of home or other location of choice, could be recommended as a complement or alternative to new therapies to help maximize quality of life for people living with ADRD and their care partners.

4.
J Am Board Fam Med ; 37(2): 215-227, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38740474

RESUMO

PURPOSE: Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study compares a passive intervention (mailed materials) to an interactive intervention (group visits) on participant ACP engagement and experiences. METHODS: We used mixed methods to examine ACP engagement at baseline and six months following two ACP interventions. Eligible patients were randomized to receive mailed materials or participate in two ACP group visits. We administered the 4-item ACP Engagement survey (n = 110) and conducted interviews (n = 23). We compared mean scores and percent change in ACP engagement, analyzed interviews with directed content analysis to understand participants' ACP experiences, and integrated the findings based on mailed materials or group visits intervention. RESULTS: All participants demonstrated increased ACP engagement scores. At six months, group visit participants reported higher percent change in mean overall score compared with mailed materials participants (+8% vs +3%, P < .0001). Group visits participants reported that being prompted to think about end-of-life preferences, gaining knowledge about ACP, and understanding the value of completing ACP documentation influenced their ACP readiness. While both interventions encouraged patients to start considering and refining their end-of-life preferences, group visits made patients feel more knowledgeable about ACP, highlighted the importance of completing ACP documentation early, and sparked further ACP discussions with others. CONCLUSIONS: While primary care patients may benefit from mailed ACP materials, patients reported increased readiness after ACP group visits. Group visits emphasized the value of upstream preparation, ongoing conversations, and increased knowledge about ACP.


Assuntos
Planejamento Antecipado de Cuidados , Atenção Primária à Saúde , Humanos , Planejamento Antecipado de Cuidados/organização & administração , Masculino , Feminino , Idoso , Pessoa de Meia-Idade , Atenção Primária à Saúde/organização & administração , Participação do Paciente , Inquéritos e Questionários
5.
JAMA Netw Open ; 7(5): e2413309, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38805226

RESUMO

Importance: More than 70 000 Medicare beneficiaries receive care in long-term acute care hospitals (LTCHs) annually for prolonged acute illness. However, little is known about long-term functional and cognitive outcomes of middle-aged and older adults after hospitalization in an LTCH. Objective: To describe survival, functional, and cognitive status after LTCH hospitalization and to identify factors associated with an adverse outcome. Design, Setting, and Participants: This retrospective cohort study included middle-aged and older adults enrolled in the Health and Retirement Study (HRS) with linked fee-for-service Medicare claims. Included participants were aged 50 years or older with an LTCH admission between January 1, 2003, and December 31, 2016, with HRS interviews available before admission. Data were analyzed between November 1, 2021, and June 30, 2023. Main Outcomes and Measures: Function and cognition were ascertained from HRS interviews conducted every 2 years. The primary outcome was death or severe impairment in the 2.5 years after LTCH hospitalization, defined as dependencies in 2 or more activities of daily living (ADLs) or dementia. Multivariable logistic regression was performed to evaluate associations with a priori selected risk factors including pre-LTCH survival prognosis (Lee index score), pre-LTCH impairment status, and illness severity characterized by receipt of mechanical ventilation and prolonged intensive care unit stay of 3 days or longer. Results: This study included 396 participants, with a median age of 75 (IQR, 68-82) years. Of the participants, 201 (51%) were women, 125 (28%) had severe impairment, and 318 (80%) died or survived with severe impairment (functional, cognitive, or both) within 2.5 years of LTCH hospitalization. After accounting for acute illness characteristics, prehospitalization survival prognosis as determined by the Lee index score and severe baseline impairment (functional, cognitive, or both) were associated with an increased likelihood of death or severe impairment in the 2.5 years after LTCH hospitalization (adjusted odds ratio [AOR], 3.2 [95% CI, 1.7 to 6.0] for a 5-point increase in Lee index score; and AOR, 4.5 [95% CI, 1.3 to 15.4] for severe vs no impairment). Conclusions and Relevance: In this cohort study, 4 of 5 middle-aged and older adults died or survived with severe impairment within 2.5 years of LTCH hospitalization. Better preadmission survival prognosis and functional and cognitive status were associated with lower risk of an adverse outcome, and these findings should inform decision-making for older adults with prolonged acute illness.


Assuntos
Cognição , Hospitalização , Humanos , Feminino , Masculino , Idoso , Estudos Retrospectivos , Hospitalização/estatística & dados numéricos , Estados Unidos/epidemiologia , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Atividades Cotidianas , Assistência de Longa Duração/estatística & dados numéricos , Medicare/estatística & dados numéricos , Fatores de Risco
6.
Lancet Healthy Longev ; 5(5): e370-e378, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38608695

RESUMO

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.


Assuntos
Planejamento Antecipado de Cuidados , Consenso , Técnica Delphi , Demência , Cuidados Paliativos , Humanos , Planejamento Antecipado de Cuidados/organização & administração , Diretivas Antecipadas , Demência/terapia , Europa (Continente) , Política de Saúde
7.
J Am Med Dir Assoc ; 25(4): 557-564.e8, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38395413

RESUMO

OBJECTIVES: POLST is widely used in the care of seriously ill patients to document decisions made during advance care planning (ACP) conversations as actionable medical orders. We conducted an integrative review of existing research to better understand associations between POLST use and key ACP outcomes as well as to identify directions for future research. DESIGN: Integrative review. SETTING AND PARTICIPANTS: Not applicable. METHODS: We queried PubMed and CINAHL databases using names of POLST programs to identify research on POLST. We abstracted study information and assessed study design quality. Study outcomes were categorized using the international ACP Outcomes Framework: Process, Action, Quality of Care, Health Status, and Healthcare Utilization. RESULTS: Of 94 POLST studies identified, 38 (40%) had at least a moderate level of study design quality and 15 (16%) included comparisons between POLST vs non-POLST patient groups. There was a significant difference between groups for 40 of 70 (57%) ACP outcomes. The highest proportion of significant outcomes was in Quality of Care (15 of 19 or 79%). In subdomain analyses of Quality of Care, POLST use was significantly associated with concordance between treatment and documentation (14 of 18 or 78%) and preferences concordant with documentation (1 of 1 or 100%). The Action outcome domain had the second highest positive rate among outcome domains; 9 of 12 (75%) Action outcomes were significant. Healthcare Utilization outcomes were the most frequently assessed and approximately half (16 of 35 or 46%) were significant. Health Status outcomes were not significant (0 of 4 or 0%), and no Process outcomes were identified. CONCLUSIONS AND IMPLICATIONS: Findings of this review indicate that POLST use is significantly associated with a Quality of Care and Action outcomes, albeit in nonrandomized studies. Future research on POLST should focus on prospective mixed methods studies and high-quality pragmatic trials that assess a broad range of person and health system-level outcomes.


Assuntos
Planejamento Antecipado de Cuidados , Humanos , Estudos Prospectivos , Documentação , Ordens quanto à Conduta (Ética Médica)
8.
Kidney Med ; 6(3): 100779, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38419789

RESUMO

Rationale & Objective: Despite guidelines calling to improve physical activity in older adults, and evidence suggesting that prekidney transplant physical function is highly associated with posttransplant outcomes, only a small percentage of older patients treated with dialysis are engaged in structured exercise. We sought to elucidate barriers and facilitators of exercise among older adults treated with dialysis awaiting transplant and their care partners. Study Design: Individual, in-depth, cognitive interviews were conducted separately for patients and care partners through secure web-conferencing. Setting & Participants: Twenty-three patients (≥50 years of age, treated with dialysis from the University of San Francisco kidney transplantation clinic, with a short physical performance battery of ≤10) and their care partners. Analytical Approach: All audio interviews were transcribed verbatim. Three investigators independently coded data and performed qualitative thematic content. The interview guide was updated iteratively based on the Capability Opportunity Motivation Behavior model. Results: Patients' median age was 60 years (57 ± 63.5) and care partners' median ages was 57 years (49.5 ± 65.5). Thirty-nine percent of patients and 78% of care partners were female, 39% of patients and 30% of care partners self-identified as African American, and 47% of dyads were spouse or partner relationships. Major themes for barriers to pretransplant exercise included lack of understanding of an appropriate regimen, physical impairments, dialysis schedules, and safety concerns. Major facilitators included having individualized or structured exercise programs, increasing social support for patients and care partners, and motivation to regain independence or functionality or to promote successful transplantation. Limitations: Participants geographically limited to Northern California. Conclusions: Although patients and care partners report numerous barriers to pretransplant exercise and activity, they also reported many facilitators. An individualized, structured, home-based exercise program could circumvent many of the reported barriers and allow older patients to improve pretransplant physical function.


Although exercise can improve the fitness of older adults treated with dialysis for kidney transplantation and reduce posttransplant complications, many such individuals do not exercise. We sought to elicit perspectives on barriers and facilitators to prekidney transplant exercises from older adults treated with dialysis and their care partners. We found that although patients and care partners had unique perspectives, they shared many barriers (such as physical and/or cognitive impairment, difficulty scheduling around dialysis, lack of guidance on exercise, and reduced exercise motivation related to dialysis) and several facilitators (such as desire to regain functionality and participate in life and motivation for successful transplantation). A shared interest among patients and care partners in joint participation in structured and home-based exercise may represent a tool to overcome barriers to pretransplant exercise.

9.
J Palliat Med ; 27(5): 667-674, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38386513

RESUMO

Introduction: The period of time before an elective operation may be an opportune time to engage older adults in advance care planning (ACP). Past interventions have not been readily incorporated into surgical workflows leaving a need for ACP tools that are generalizable, easy to implement, and effective. Design: This is a qualitative study. Setting and Subjects: Older adults with a history of cancer and a recent major operation were recruited through their surgical oncologist at a tertiary medical center in the United States. Interviews were conducted to determine how to adapt the validated PrepareForYourCare.org ACP program with electronic health record prompts for the perioperative setting and openness to introducing ACP during a presurgical visit. We used qualitative content analysis to determine themes. Results: Eight themes were identified: (1) ACP as static and private, (2) people expected a prompt, (3) family trusted to do the "right" thing, (4) lack of relationship or comfort with providers, (5) a team-based approach can be helpful, (6) surgeon's expertise (e.g., prognosis and surgical risk), (7) ACP belongs on the surgical checklist, and (8) patients would welcome a conversation starter. Discussion: Older surgical patients are interested in engaging with ACP, particularly if prompted, and believe it has a place on the preoperative "checklist." Conclusions: To effectively engage patients with ACP, a combination of routine prompts by the health care team and patient-centered follow-up may be required.


Assuntos
Planejamento Antecipado de Cuidados , Pesquisa Qualitativa , Humanos , Idoso , Masculino , Feminino , Idoso de 80 Anos ou mais , Estados Unidos , Entrevistas como Assunto , Pessoa de Meia-Idade , Neoplasias/cirurgia , Neoplasias/psicologia
10.
J Gen Intern Med ; 39(4): 652-660, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38169025

RESUMO

Advance care planning (ACP) has been recognized as crucial by patients, families, and clinicians; however, different definitions and measurements have led to inconsistencies in practice and mixed evidence in the literature. This narrative review explores ACP's evolution, innovations, and outcomes using thematic analysis to synthesize data from randomized controlled trials, reviews, and editorials. Key findings include (1) ACP has evolved over the past several decades from a sole focus on code status and advance directive (AD) forms to a continuum of care planning over the life course focused on tailored preparation for patients and surrogate decision-makers and (2) ACP measurement has evolved from traditional outcome metrics, such as AD completion, to a comprehensive outcomes framework that includes behavior change theory, systems, implementation science, and a focus on surrogate outcomes. Since the recent development of an ACP consensus definition and outcomes framework, high-quality trials have reported mainly positive outcomes for interventions, especially for surrogates, which aligns with the patient desire to relieve decision-making burden for loved ones. Additionally, measurement of "clinically meaningful" ACP information, including documented goals of care discussions, is increasingly being integrated into electronic health records (EHR), and emerging, real-time assessments and natural language processing are enhancing ACP evaluation. To make things easier for patients, families, and care teams, clinicians and researchers can use and disseminate these evolved definitions; provide patients validated, easy-to-use tools that prime patients for conversations and decrease health disparities; use easy-to-access clinician training and simple scripts for interdisciplinary team members; and document patients' values and preferences in the medical record to capture clinically meaningful ACP so this information is available at the point of care. Future efforts should focus on efficient implementation, expanded reimbursement options, and seamless integration of EHR documentation to ensure ACP's continued evolution to better serve patients and their care partners.


Assuntos
Planejamento Antecipado de Cuidados , Humanos , Diretivas Antecipadas , Comunicação , Registros Eletrônicos de Saúde , Documentação
11.
J Am Geriatr Soc ; 72(2): 559-566, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38193805

RESUMO

BACKGROUND: Surrogate preparedness for medical decision-making is an important part of care planning. This study examined preparedness and engagement among historically marginalized surrogates. METHODS: Surrogates were included if they were named medical decision-makers by patients ≥55 years at a San Francisco safety-net and Veterans Affairs hospital. We assessed preparedness for medical decision-making by asking if surrogates had been formally asked to be the medical decision-maker, if patients had discussed medical wishes with surrogates, and if the surrogate role and these medical wishes had been documented. We assessed surrogate confidence and readiness using a modified Surrogate ACP Engagement Survey. We used Wilcoxon rank-sum tests to measure the association of engagement scores with surrogate characteristics. RESULTS: Of 422 surrogates, their mean age was 53 years (SD ±14.5), 73% were from minoritized groups, 38% were Spanish-speaking, and 15% had limited health literacy. For preparedness outcomes, 13% of surrogates were not formally asked to play this role, 46% reported the patient had not discussed end-of-life medical wishes, and 51% reported there had been no formal documentation of the surrogate role. Surrogates reported higher confidence 4.43/5 (SD ± 0.64) than readiness 3.70 (1.22) for decision-making (p < 0.001). Confidence and readiness scores were lower among historically marginalized participants. CONCLUSION: More resources are needed to prepare surrogate decision-makers from historically marginalized communities for discussing patient's goals of care and treatment preferences.


Assuntos
Planejamento Antecipado de Cuidados , Letramento em Saúde , Humanos , Tomada de Decisões , Pacientes , São Francisco
12.
Death Stud ; 48(1): 33-42, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-36892315

RESUMO

COVID-19 may cause sudden serious illness, and relatives having to act on patients' behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In 'LexisNexis Uni', we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring, and narrating the data. We identified 131 articles, published in UK (n = 59), Canada (n = 32), US (n = 15), Australia (n = 14), Ireland (n = 6), and one each from Israel, Uganda, India, New-Zealand, and France. Forty articles (31%) included definitions of ACP. Most mentioned exploring (93%), discussing (71%), and recording (72%) treatment preferences; 28% described exploration of values/goals, 66% encouraged engaging in ACP. No false or sensationalist information about ACP was provided. ACP was often not fully described. Public campaigns about ACP might improve the full picture of ACP to the public.


Assuntos
Planejamento Antecipado de Cuidados , COVID-19 , Humanos , Pandemias , Austrália , Canadá
13.
Acad Emerg Med ; 31(1): 18-27, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37814372

RESUMO

BACKGROUND: During acute health deterioration, emergency medicine and palliative care clinicians routinely discuss code status (e.g., shared decision making about mechanical ventilation) with seriously ill patients. Little is known about their approaches. We sought to elucidate how code status conversations are conducted by emergency medicine and palliative care clinicians and why their approaches are different. METHODS: We conducted a sequential-explanatory, mixed-method study in three large academic medical centers in the Northeastern United States. Attending physicians and advanced practice providers working in emergency medicine and palliative care were eligible. Among the survey respondents, we purposefully sampled the participants for follow-up interviews. We collected clinicians' self-reported approaches in code status conversations and their rationales. A survey with a 5-point Likert scale ("very unlikely" to "very likely") was used to assess the likelihood of asking about medical procedures (procedure based) and patients' values (value based) during code status conversations, followed by semistructured interviews. RESULTS: Among 272 clinicians approached, 206 completed the survey (a 76% response rate). The reported approaches differed greatly (e.g., 91% of palliative care clinicians reported asking about a patient's acceptable quality of life compared to 59% of emergency medicine clinicians). Of the 206 respondents, 118 (57%) agreed to subsequent interviews; our final number of semistructured interviews included seven emergency medicine clinicians and nine palliative care clinicians. The palliative care clinicians stated that the value-based questions offer insight into patients' goals, which is necessary for formulating a recommendation. In contrast, emergency medicine clinicians stated that while value-based questions are useful, they are vague and necessitate extended discussions, which are inappropriate during emergencies. CONCLUSIONS: Emergency medicine and palliative care clinicians reported conducting code status conversations differently. The rationales may be shaped by their clinical practices and experiences.


Assuntos
Medicina de Emergência , Cuidados Paliativos , Humanos , Qualidade de Vida , Comunicação , Inquéritos e Questionários
14.
Alzheimers Dement ; 20(2): 1309-1320, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37985444

RESUMO

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.


Assuntos
Planejamento Antecipado de Cuidados , Demência , Assistência Terminal , Humanos , Consenso , Técnica Delphi , Demência/terapia
15.
Neurourol Urodyn ; 43(1): 11-21, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38014566

RESUMO

OBJECTIVES: To explore the context in which older men navigate treatment for stress urinary incontinence (SUI) following prostate surgery by characterizing lived experience of men with symptomatic SUI. SUBJECTS/PATIENTS AND METHODS: Mixed method study using surveys and semistructured interviews to examine a cohort of men who underwent evaluation for treatment of postprostatectomy SUI. RESULTS: Thirty-six men were interviewed after consultation for SUI and 31 had complete quantitative clinical data. Twenty-six underwent surgery and 10 chose no surgical intervention. In qualitative interviews, respondents experienced substantial decline in quality of life due to incontinence citing concerns associated with use of pads and worrying about incontinence. Most patients reported "workarounds"-efforts to mitigate or manage incontinence including Kegels, physical therapy, and garments. Participants also reported lifestyle changes including less strenuous physical activity, less sexual activity, and/or fewer social gatherings. Patients then described a "breaking point" where incontinence workarounds were no longer sufficient. After seeking evaluation, men described challenges in exploring treatment for SUI, including access to care and provider knowledge of treatment options. CONCLUSION: In a novel study of patients living with SUI a predictable lived experience was observed that culminated in a desire for change or "breaking point." In all men, this led to treatment-seeking behaviors and for many it led to SUI intervention. Despite effective treatments, patients continue to meet barriers gaining access to SUI evaluation and treatment.


Assuntos
Incontinência Urinária por Estresse , Incontinência Urinária , Esfíncter Urinário Artificial , Masculino , Humanos , Idoso , Incontinência Urinária por Estresse/cirurgia , Qualidade de Vida , Resultado do Tratamento , Avaliação de Resultados da Assistência ao Paciente
17.
Glob Adv Integr Med Health ; 12: 27536130231202989, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37745819

RESUMO

Background: Preventing Loss of Independence through Exercise (PLIÉ) is an in-person group mind-body movement program for people across the spectrum of cognitive decline and care partners (CPs). Objective: This study developed and refined an online version called Moving Together and tested feasibility and satisfaction with an online delivery. Methods: In Phase 1, we used qualitative methods to determine which elements of the in-person program were essential to retain for the online version and adaptations that would be needed to support the user experience. In Phase 2, we created a prototype of the online program and iteratively refined it based on user feedback. In Phase 3, we assessed feasibility of online delivery based on class attendance and program completion; we assessed satisfaction and participant-reported outcomes using a post-program evaluation survey with quantitative and qualitative components. Results: Phase 1 findings from 27 participants (14 PLWD, 13 CPs) revealed three key considerations related to online delivery of PLIÉ: technology use, social connection as a primary motivator, and physical safety concerns. Phase 2 iterative testing among 25 participants (14 PLWD, 11 CPs) resulted in key refinements to program delivery and instructional elements; Phase 3 pilot testing included 39 participants (12 PLWD, 15 CPs, 12 MCI) who attended 75 ± 29% of 24 classes; 77% completed the 12-week program, of whom 96% rated it as excellent or good. Participant-reported outcomes included improvements in social connection, emotional well-being, physical function, cognitive function and present-centered body awareness. PLWD or MCI also reported improvements in self-concept, and CPs reported improvements in caregiving self-efficacy. The primary challenges were related to participant navigation of technology. Conclusion: The Moving Together online program is feasible for PLWD or MCI and CPs with participants reporting high satisfaction and positive outcomes across multiple domains. Providing individual technology support is critical for the success of livestreamed, online interventions for dementia.

18.
J Pain Symptom Manage ; 66(5): 551-560.e1, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37536524

RESUMO

CONTEXT: Despite the association of advance care planning (ACP) with improved patient and caregiver outcomes, Chinese American elders have low rates of ACP. OBJECTIVES: Assess ACP facilitators/barriers in the San Francisco (SF) Chinese community and codesign, implement, and test community-based ACP-promoting pilot events. METHODS: A Chinese Community Committee (N = 19 community-based organization leaders, health system representatives, community members) conducted focus groups in Cantonese and English with Chinese older adults (age ≥55), caregivers, and community leaders. The Committee designed and implemented pilot events in-person and online. We analyzed focus group data using thematic analysis; assessed pre-to-post-event readiness to engage in ACP (validated survey; 14 scale, 4 = most ready); and assessed event acceptability. RESULTS: A total of 34 people participated in six focus groups. Themes described Chinese community-specific importance of ACP (e.g., reduces family burden), barriers (e.g., younger generations lack tools to discuss ACP with elders and vice versa), and facilitators (e.g., intergenerational events, culturally/linguistically appropriate materials). Based on focus groups findings, the Committee developed a novel ACP tool and designed intergenerational events. A total of 195 participants attended 10 events; 95% were Chinese, 90% spoke Chinese languages, 80% were women. ACP readiness increased significantly (1.66 [SD 0.84] vs. 2.03 [SD 0.85]; P < 0.001); 94% of participants were comfortable attending and 96% would recommend events. CONCLUSION: Community-developed intergenerational events that highlight the value of ACP and address barriers are acceptable and increase ACP engagement in the Chinese community.


Assuntos
Planejamento Antecipado de Cuidados , População do Leste Asiático , Idoso , Feminino , Humanos , Masculino , Asiático , Grupos Focais , Idioma , Estados Unidos
19.
J Am Geriatr Soc ; 71(10): 3244-3253, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37431769

RESUMO

BACKGROUND: Despite known racial disparities in advance care planning (ACP), little is known about ACP disparities experienced by US immigrants. METHODS: We used data from the 2016 wave of the Health and Retirement Study. We defined ACP engagement as self-reported end-of-life (EOL) discussions, designation of a power of attorney (DPOA), documented living will, or "any" of the three behaviors. Immigration status was determined by respondent-reported birth outside the United States. Time in the United States was calculated by subtracting the year of arrival in the United States from the survey year of 2016. We used multivariable logistic regression to estimate the association between ACP engagement and immigration status and the relationship of acculturation to ACP engagement, adjusting for sociodemographics, religiosity, and life expectancy. RESULTS: Of the total cohort (N = 9928), 10% were immigrants; 45% of immigrants identified as Hispanic. After adjustment, immigrants had significantly lower adjusted probability of any ACP engagement (immigrants: 74% vs. US-born: 83%, p < 0.001), EOL discussions (67% vs. 77%, p < 0.001), DPOA designation (50% vs. 59%, p = 0.001) and living will documentation (50% vs. 56%, p = 0.03). Among immigrants, each year in the United States was associated with a 4% increase in the odds of any ACP engagement (aOR 1.04, 95% CI 1.03-1.06), ranging from 36% engaged 10 years after immigration to 78% after 70 years. CONCLUSION: ACP engagement was lower for US immigrants compared to US-born older adults, particularly for those that recently immigrated. Future studies should explore strategies to reduce disparities in ACP and the unique ACP needs among different immigrant populations.

20.
Ann Am Thorac Soc ; 20(12): 1709-1717, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37463307

RESUMO

Rationale: Social isolation and loneliness are gaining recognition for their role in health outcomes, yet they have not been defined in people with chronic obstructive pulmonary disease (COPD). Objective: To determine the national prevalence of and characteristics associated with social isolation and loneliness in people with COPD. Methods: This is a cross-sectional study of community-dwelling adults aged ⩾50 years in the nationally representative HRS (Health and Retirement Study) (2016-2018). Participants self-reported COPD and supplemental oxygen use and were categorized into three groups: 1) no COPD; 2) COPD; and 3) COPD on oxygen. Social isolation was defined using a nine-item scale indicating minimal household contacts, social network interaction, and community engagement. Loneliness was measured using the 3-Item UCLA Loneliness Scale. Multivariable logistic regression defined prevalence and associated characteristics for both. Results: Participants (n = 10,384) were on average 68 years old (standard deviation, ±10.5), 54% female, 10% Black, 11% self-reported COPD, and 2% self-reported supplemental oxygen. Overall, 12% were socially isolated, 12% lonely, and 3% both socially isolated and lonely. People with COPD had a higher adjusted prevalence of social isolation (no COPD: 11%; COPD: 16%; COPD on oxygen: 20%; P < 0.05) and loneliness (no COPD: 11%; COPD: 18%; COPD on oxygen: 22%; P < 0.001). In those with COPD, characteristics associated with social isolation (P < 0.05) included sex (men: 22%; women: 13%), non-Hispanic White ethnicity (White: 19%; Black: 7%), low net worth (<$6,000: 32%; $81,001-$239,000: 10%), depression (depression: 24%; no depression: 14%), having difficulty with one or more activities of daily living (one or more difficulty: 22%; no difficulty: 14%), and current cigarette use (current: 24%; never: 13%). Characteristics associated with loneliness (P < 0.05) included younger age (50-64 yr: 22%; 75-84 yr: 12%), being single (single: 32%; married: 12%), depression (depression: 36%; no depression: 13%), having difficulty with one or more activities of daily living (one or more difficulty: 29%; no difficulty: 15%), diabetes (diabetes: 26%; no diabetes: 17%), and heart disease (heart disease 23%; no heart disease: 17%). Conclusions: Nearly one in six adults with COPD experience social isolation, and one in five experience loneliness, with almost twice the prevalence among those on supplemental oxygen compared with the general population. Demographic and clinical characteristics identify those at highest risk to guide clinical and policy interventions.


Assuntos
Diabetes Mellitus , Cardiopatias , Doença Pulmonar Obstrutiva Crônica , Masculino , Humanos , Adulto , Feminino , Idoso , Solidão , Atividades Cotidianas , Prevalência , Estudos Transversais , Isolamento Social , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Oxigênio
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