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1.
medRxiv ; 2024 Sep 18.
Artigo em Inglês | MEDLINE | ID: mdl-39371133

RESUMO

Importance: People with Alzheimer's disease (AD) now have access to disease-modifying treatment with anti-amyloid monoclonal antibodies (mAbs). Their perception of risks and benefits and approach to treatment decisions remain unknown. Objective: To understand how people with early AD consider benefits and costs of anti-amyloid mAbs and make decisions about treatment. Design: Qualitative semi-structured interviews. Setting: Memory care clinics at two academic medical centers. Participants: People with biomarker or imaging-confirmed early AD referred for evaluation for treatment with anti-amyloid mAbs. Main Outcomes and Measures: Themes identified through content analysis. Results: Among 22 participants, mean age was 70 years, 8 (36%) were women, 22 (100%) were White, 8 (36%) had less than a college degree, 11 (50%) had annual income less than $100,000, and 6 (27%) lived in a rural area. The analysis revealed 3 major themes and associated subthemes: 1) People with AD sought and obtained information from different sources-advocacy organizations, the Internet, and clinicians; 2) hopes, expected benefits, and the existential threat of dementia drove willingness and readiness to start lecanemab-hopes included more time feeling like themselves and doing enjoyable activities; expected benefits included stalling progression, reversing cognitive decline or cure; 3) individual traits and preferences, family factors, and degree of trust in expertise influenced how people balanced risks and benefits- some would accept treatment at any cost; others carefully weighed risks and burdens carefully, but were motivated to pursue treatment by supportive families, insurance coverage, and trust in expertise; for a few, costs decidedly outweighed their personal benefits. People with AD desired more individualized information on risks and benefits and wanted to hear more from patients who took the medication. Conclusions and Relevance: Results from this qualitative analysis inform clinician, health system and policy efforts to promote individualized treatment decisions for anti-amyloid mAb treatment through multimodal education and outreach, evidence-based communication skills, and adaptation of similar care models. Key Points: Question: How do people with Alzheimer's disease (AD) decide on treatment with newly available anti-amyloid monoclonal antibodies?Findings: In this qualitative analysis, people with AD considering treatment relied on multiple information sources; were motivated by hope to delay cognitive decline and preserve independence; and worried side effects would impair quality of life. Personality traits, family support, and trust in expertise determined how they balanced these tradeoffs. People with AD wanted more personalized information and to hear from others who had taken the medications.Meaning: As access to treatment expands, these findings inform how clinicians can help people with AD make individualized treatment decisions.

2.
J Neuropsychiatry Clin Neurosci ; : appineuropsych20230190, 2024 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-39169740

RESUMO

OBJECTIVE: Responsive and human-centered neurotechnology development requires attention to public perceptions, particularly among groups underserved by existing treatments. METHODS: The authors conducted a preregistered nationally representative survey (https://osf.io/ej9h2) using the NORC at the University of Chicago AmeriSpeak panel. One vignette compared an implanted neural device with surgical resection in a scenario involving epilepsy, and another compared an implanted neural device with medications in a scenario involving mood disorders. The survey also contained questions about respondents' confidence that a device would be available if needed and confidence that enough research has been conducted among people like themselves. Responses were entered into nested survey-weighted logistic regression models, including a base demographic model (to test the overall effect of demographic factors) and an adjusted model that also included socioeconomic, religious and political, and health care access predictors. RESULTS: A total of 1,047 adults responded to the survey, which oversampled Black non-Hispanic (N=214), Hispanic (N=210), and rural (N=219) Americans. In the base demographic model, older Americans were more likely to prefer an implanted device in the two scenarios, and non-Hispanic Black Americans were less likely than non-Hispanic White Americans to prefer a device; rural Americans were less confident than urban or suburban Americans in having access, and non-Hispanic Black and rural Americans were less confident that enough research has been conducted among people like themselves. In adjusted models, income was a key mediator, partially explaining the effect of age and the contrast between Black and White non-Hispanic respondents on preferences for a device in the epilepsy scenario and fully explaining the effect of rurality on confidence in access. CONCLUSIONS: Demographic differences in prospective preferences and concerns highlight the importance of including members of underserved communities in neurotechnology development.

3.
Ann Surg ; 280(4): 623-632, 2024 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-39069901

RESUMO

OBJECTIVE: To assess the effect of a practice-level preoperative frailty screening and optimization toolkit (OPTI-Surg) on postoperative functional recovery and complications in elderly cancer patients undergoing major surgery. BACKGROUND: Frailty is common in older adults. It increases the risk of poor postoperative functional recovery and complications. The potential for a practice-level screening/optimization intervention to improve outcomes is unknown. METHODS: Thoracic, gastrointestinal, and urologic oncological surgery practices within the National Cancer Institute Community Oncology Research Program (NCORP) were randomized 1:1:1 to usual care (UC), OPTI-Surg, or OPTI-Surg with an implementation coach. OPTI-Surg consisted of the Edmonton Frail Scale and guided recommendations for referral interventions. Patients 70 years old or above undergoing curative intent surgery were eligible. The primary outcome was 8 weeks postoperative function (kcal/wk). The key secondary outcome was complications within 90 days. Mixed models were used to compare UC to the 2 OPTI-Surg arms combined. RESULTS: From July 2019 to September 2022, 325 patients were enrolled in 29 practices. One hundred ninety-nine (64 UC, 135 OPTI-Surg) and 279 (78 UC, 201 OPTI-Surg) were evaluable for primary and secondary analysis, respectively. UC and OPTI-Surg patients did not significantly differ in total caloric expenditure (2.2 UC, 2.0 OPTI-Surg) after adjusting for baseline function ( P =0.53). UC and OPTI-Surg patients did not significantly differ in postoperative complications (25.6% UC, 35.3% OPTI-Surg, P =0.5). CONCLUSIONS: Frailty assessment was successfully performed, but the OPTI-Surg intervention did not improve postoperative function nor reduce postoperative complications compared with UC. Future analysis will explore practice-level factors associated with toolkit implementation and the differences between the coaching and noncoaching arms.


Assuntos
Avaliação Geriátrica , Neoplasias , Complicações Pós-Operatórias , Humanos , Idoso , Masculino , Feminino , Complicações Pós-Operatórias/epidemiologia , Neoplasias/cirurgia , Idoso de 80 Anos ou mais , Cuidados Pré-Operatórios/métodos , Fragilidade/complicações , Melhoria de Qualidade
4.
BMC Prim Care ; 25(1): 197, 2024 Jun 04.
Artigo em Inglês | MEDLINE | ID: mdl-38834994

RESUMO

BACKGROUND: Many patients with diabetic kidney disease (DKD) do not receive evidence-based, guideline-recommended treatment shown to reduce DKD progression and complications. Proactive electronic consultations (e-consults) are an emerging intervention strategy that could potentially allow nephrologists to provide timely and evidence-based guidance to primary care providers (PCPs) engaged in early DKD care. METHODS: The objective of this study was to explore perspectives about potential barriers and facilitators associated with a proactive e-consult program to improve DKD care delivery. We conducted semi-structured qualitative interviews with PCPs across three different health systems. Interview transcripts were reviewed in a rapid qualitative analysis approach to iteratively identify, refine, and achieve consensus on a final list of themes and subthemes. RESULTS: A total of 18 interviews were conducted. PCPs across all sites identified similar challenges to delivering guideline-recommended DKD care. PCPs were supportive of the proactive e-consult concept. Three major themes emerged surrounding (1) perceived potential benefits of proactive e-consults, including educational value and improved specialist access; (2) concerns about the proactive nature of e-consults, including the potential to increase PCP workload and the possibility that e-consults could be seen as documenting substandard care; and (3) leveraging of care teams to facilitate recommended DKD care, such as engaging clinic-based pharmacists to implement specialist recommendations from e-consults. CONCLUSION: In this pre-implementation qualitative study, PCPs noted potential benefits and identified concerns and implementation barriers for proactive e-consults for DKD care. Strategies that emerged for promoting successful implementation included involving clinic support staff to enact e-consult recommendations and framing e-consults as a system improvement effort to avoid judgmental associations.


Assuntos
Atitude do Pessoal de Saúde , Nefropatias Diabéticas , Médicos de Atenção Primária , Pesquisa Qualitativa , Humanos , Nefropatias Diabéticas/terapia , Masculino , Feminino , Nefrologia , Atenção Primária à Saúde , Entrevistas como Assunto , Consulta Remota
5.
JAMA Otolaryngol Head Neck Surg ; 150(7): 545-554, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38753343

RESUMO

Importance: Timely diagnosis and treatment are of paramount importance for patients with head and neck cancer (HNC) because delays are associated with reduced survival rates and increased recurrence risk. Prompt referral to HNC specialists is crucial for the timeliness of care, yet the factors that affect the referral and triage pathway remain relatively unexplored. Therefore, to identify barriers and facilitators of timely care, it is important to understand the complex journey that patients undertake from the onset of HNC symptoms to referral for diagnosis and treatment. Objective: To investigate the referral and triage process for patients with HNC and identify barriers to and facilitators of care from the perspectives of patients and health care workers. Design, Participants, and Setting: This was a qualitative study using semistructured interviews of patients with HNC and health care workers who care for them. Participants were recruited from June 2022 to July 2023 from HNC clinics at 2 tertiary care academic medical centers in Boston, Massachusetts. Data were analyzed from July 2022 to December 2023. Main Outcomes and Measures: Themes identified from the perspectives of both patients and health care workers on factors that hinder or facilitate the HNC referral and triage process. Results: In total, 72 participants were interviewed including 42 patients with HNC (median [range] age, 60.5 [19.0-81.0] years; 27 [64%] females) and 30 health care workers (median [range] age, 38.5 [20.0-68.0] years; 23 [77%] females). Using thematic analysis, 4 major themes were identified: the HNC referral and triage pathway is fragmented; primary and dental care are critical for timely referrals; efficient interclinician coordination expedites care; and consistent patient-practitioner engagement alleviates patient fear. Conclusions and Relevance: These findings describe the complex HNC referral and triage pathway, emphasizing the critical role of initial symptom recognition, primary and dental care, patient information flow, and interclinician and patient-practitioner communication, all of which facilitate prompt HNC referrals.


Assuntos
Neoplasias de Cabeça e Pescoço , Pesquisa Qualitativa , Encaminhamento e Consulta , Triagem , Humanos , Masculino , Neoplasias de Cabeça e Pescoço/terapia , Neoplasias de Cabeça e Pescoço/diagnóstico , Feminino , Pessoa de Meia-Idade , Idoso , Adulto , Entrevistas como Assunto , Tempo para o Tratamento
6.
Epilepsy Behav ; 153: 109707, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38430673

RESUMO

This study explored illness experiences and decision-making among patients with epilepsy who underwent two different types of surgical interventions: resection versus implantation of the NeuroPace Responsive Neurostimulation System (RNS). We recruited 31 participants from a level four epilepsy center in an academic medical institution. We observed 22 patient clinic visits (resection: n = 10, RNS: n = 12) and conducted 18 in-depth patient interviews (resection: n = seven, RNS: n = 11); most visits and interviews included patient caregivers. Using an applied ethnographic approach, we identified three major themes in the experiences of resection versus RNS patients. First, for patients in both cohorts, the therapeutic journey was circuitous in ways that defied standardized first-, second-, and third- line of care models. Second, in conceptualizing risk, resection patients emphasized the permanent loss of "taking out" brain tissue whereas RNS patients highlighted the reversibility of "putting in" a device. Lastly, in considering benefit, resection patients perceived their surgery as potentially curative while RNS patients understood implantation as primarily palliative with possible additional diagnostic benefit from chronic electrocorticography. Insight into the perspectives of patients and caregivers may help identify key topics for counseling and exploration by clinicians.


Assuntos
Estimulação Encefálica Profunda , Epilepsia Resistente a Medicamentos , Epilepsia , Humanos , Epilepsia Resistente a Medicamentos/cirurgia , Epilepsia/cirurgia , Eletrocorticografia , Avaliação de Resultados da Assistência ao Paciente
7.
Otolaryngol Head Neck Surg ; 170(2): 457-467, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38079157

RESUMO

OBJECTIVES: To investigate the role of patients' personal social networks (SNs) in accessing head and neck cancer (HNC) care through patients' and health care workers' (HCWs) perspectives. STUDY DESIGN: Qualitative study. SETTING: Tertiary HNC centers at 2 academic medical centers, including 1 safety net hospital. METHODS: Patients with newly diagnosed HNC, and HCWs caring for HNC patients, aged ≥18 years were recruited between June 2022 and July 2023. Semistructured interviews were conducted with both patients and HCWs. Inductive and deductive thematic analysis was performed with 2 coders (κ = 0.82) to analyze the data. RESULTS: The study included 72 participants: 42 patients (mean age 57 years, 64% female, 81% white), and 30 HCWs (mean age 42 years, 77% female, 83% white). Four themes emerged: (1) Patients' SNs facilitate care through various forms of support, (2) patients may hesitate to seek help from their networks, (3) obligations toward SNs may act as barriers to seeking care, and (4) the SN composition and dedication influence care-seeking. CONCLUSION: Personal SNs play a vital role in prompting early care-seeking among HNC patients. SN-based interventions could enhance care and improve outcomes for HNC patients.


Assuntos
Neoplasias de Cabeça e Pescoço , Aceitação pelo Paciente de Cuidados de Saúde , Humanos , Feminino , Adolescente , Adulto , Pessoa de Meia-Idade , Masculino , Pesquisa Qualitativa , Neoplasias de Cabeça e Pescoço/terapia , Pessoal de Saúde , Rede Social
8.
JAMA Netw Open ; 6(9): e2336030, 2023 09 05.
Artigo em Inglês | MEDLINE | ID: mdl-37768660

RESUMO

Importance: Although the barriers to dementia care in primary care are well characterized, primary care practitioner (PCP) perspectives could be used to support the design of values-aligned dementia care pathways that strengthen the role of primary care. Objective: To describe PCP perspectives on their role in dementia diagnosis and care. Design, Setting, and Participation: In this qualitative study, interviews were conducted with 39 PCPs (medical doctors, nurse practitioners, and doctors of osteopathic medicine) in California between March 2020 and November 2022. Results were analyzed using thematic analysis. Main Outcomes and Measures: Overarching themes associated with PCP roles in dementia care. Results: Interviews were conducted with 39 PCPs (25 [64.1%] were female; 16 [41%] were Asian). The majority (36 PCPs [92.3%]) reported that more than half of their patients were insured via MediCal, the California Medicaid program serving low-income individuals. Six themes were identified that convey PCPs' perspectives on their role in dementia care. These themes focused on (1) their role as first point of contact and in the diagnostic workup; (2) the importance of long-term, trusting relationships with patients; (3) the value of understanding patients' life contexts; (4) their work to involve and educate families; (5) their activities around coordinating dementia care; and (6) how the care they want to provide may be limited by systems-level constraints. Conclusions and Relevance: In this qualitative study of PCP perspectives on their role in dementia care, there was alignment between PCP perspectives about the core values of primary care and their work diagnosing and providing care for people living with dementia. The study also identified a mismatch between these values and the health systems infrastructure for dementia care in their practice environment.


Assuntos
Demência , Médicos de Atenção Primária , Atenção Primária à Saúde , Feminino , Humanos , Masculino , Demência/diagnóstico , Demência/terapia , Pessoal de Saúde , Estados Unidos , Papel do Médico
9.
JAMA Intern Med ; 183(8): 839-848, 2023 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-37399038

RESUMO

Importance: There is substantial institutional variability in the intensity of end-of-life care that is not explained by patient preferences. Hospital culture and institutional structures (eg, policies, practices, protocols, resources) might contribute to potentially nonbeneficial high-intensity life-sustaining treatments near the end of life. Objective: To understand the role of hospital culture in the everyday dynamics of high-intensity end-of-life care. Design, Setting, and Participants: This comparative ethnographic study was conducted at 3 academic hospitals in California and Washington that differed in end-of-life care intensity based on measures in the Dartmouth Atlas and included hospital-based clinicians, administrators, and leaders. Data were deductively and inductively analyzed using thematic analysis through an iterative coding process. Main Outcome and Measure: Institution-specific policies, practices, protocols, and resources and their role in the everyday dynamics of potentially nonbeneficial, high-intensity life-sustaining treatments. Results: A total of 113 semistructured, in-depth interviews (66 women [58.4%]; 23 [20.4%] Asian, 1 [0.9%] Black, 5 [4.4%] Hispanic, 7 [6.2%] multiracial, and 70 [61.9%] White individuals) were conducted with inpatient-based clinicians and administrators between December 2018 and June 2022. Respondents at all hospitals described default tendencies to provide high-intensity treatments that they believed were universal in US hospitals. They also reported that proactive, concerted efforts among multiple care teams were required to deescalate high-intensity treatments. Efforts to deescalate were vulnerable to being undermined at multiple points during a patient's care trajectory by any individual or entity. Respondents described institution-specific policies, practices, protocols, and resources that engendered broadly held understandings of the importance of deescalating nonbeneficial life-sustaining treatments. Respondents at different hospitals reported different policies and practices that encouraged or discouraged deescalation. They described how these institutional structures contributed to the culture and everyday dynamics of end-of-life care at their institution. Conclusions and Relevance: In this qualitative study, clinicians, administrators, and leaders at the hospitals studied reported that they work in a hospital culture in which high-intensity end-of-life care constitutes a default trajectory. Institutional structures and hospital cultures shape the everyday dynamics by which clinicians may deescalate end-of-life patients from this trajectory. Individual behaviors or interactions may fail to mitigate potentially nonbeneficial high-intensity life-sustaining treatments if extant hospital culture or a lack of supportive policies and practices undermine individual efforts. Hospital cultures need to be considered when developing policies and interventions to decrease potentially nonbeneficial, high-intensity life-sustaining treatments.


Assuntos
Assistência Terminal , Humanos , Feminino , Hospitais , Centros Médicos Acadêmicos , Washington
10.
Transl Androl Urol ; 12(5): 840-848, 2023 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-37305619

RESUMO

Background: Frailty is common among urology patients in general as well as among men seeking evaluation for stress urinary incontinence (SUI), with 6.1% of men undergoing artificial urinary sphincter placement considered frail. It is unclear if and how patient views on frailty and incontinence severity impact decision-making with regards to SUI treatment. Methods: We undertook a mixed methods analysis to evaluate the intersection of frailty, incontinence severity, and treatment decision-making is presented. To do so, we utilized a previously published cohort of men undergoing evaluation for SUI at the University of California, San Francisco between 2015 and 2020, selecting those who had evaluation with timed up and go test (TUGT), objective measures of incontinence, and patient-reported outcome measures (PROMs). A subset of these participants had additionally undergone semi-structured interviews, and these interviews were re-examined to thematically code them with a focus on the impact of frailty and incontinence severity on SUI treatment decision-making. Results: Among the original cohort of 130 patients, 72 had an objective measure of frailty and were included in our analysis; 18 of these individuals had corresponding qualitative interviews. Common themes identified included (I) impact of incontinence severity on decision-making; (II) the interaction between frailty and incontinence; (III) the impact of comorbidity on treatment decision-making; and (IV) age as a construct of frailty and impact on surgical choice and/or recovery. Direct quotations regarding each theme provides insight into patients' views and drivers of SUI treatment decision-making. Conclusions: The impact of frailty on treatment decision-making for patients with SUI is complex. This mixed methods study highlights the variety of patient views on frailty with regards to surgical intervention for male SUI. Urologists should make a concerted effort to personalize patient counseling for SUI management and take time to understand each patient's perspective in order to individualize SUI treatment decision-making. More research is needed to help identify factors that influence decision-making for frail male patients with SUI.

11.
Br J Anaesth ; 130(5): 567-572, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36868965

RESUMO

BACKGROUND: Postoperative cognitive dysfunction (POCD) is a concern after anaesthesia and surgery, but preoperative discussion of neurocognitive risks with older patients rarely occurs. Anecdotal experiences of POCD are common in the popular media and may inform patient perspectives. However, the degree of alignment between lay and scientific perspectives on POCD is not known. METHODS: We performed inductive qualitative thematic analysis on website user comments publicly submitted under an article entitled, 'The hidden long-term risks of surgery: "It gives people's brains a hard time"', published by the UK-based news source The Guardian in April 2022. RESULTS: We analysed 84 comments from 67 unique users. Themes that emerged from user comments included the importance of functional impact ('Couldn't work … even reading was a struggle'), attribution to a range of causes but particularly the use of general, rather than consciousness-preserving, anaesthesia techniques ('side effects aren't fully understood'), and inadequate preparation and response by healthcare providers ('I would have benefited by being warned'). CONCLUSIONS: There is misalignment between professional and lay understandings of POCD. Lay people emphasise subjective and functional impact of symptoms, and express beliefs about the role of anaesthetics in causing POCD. Some patients and caregivers affected by POCD report feeling abandoned by medical providers. In 2018, new nomenclature for postoperative neurocognitive disorders was published, which better aligns with lay perspectives by including subjective complaints and functional decline. Further studies based on newer definitions and public messaging may improve concordance between different understandings of this postoperative syndrome.


Assuntos
Anestesia , Anestésicos , Complicações Cognitivas Pós-Operatórias , Humanos , Complicações Cognitivas Pós-Operatórias/etiologia , Complicações Pós-Operatórias/diagnóstico , Encéfalo , Anestesia/efeitos adversos
12.
Clin Gerontol ; 46(2): 180-194, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35713396

RESUMO

OBJECTIVES: Older immigrants of Latin American descent are disproportionately impacted by dementia, yet little is known about their dementia- and brain health-related knowledge. We explored perspectives on brain health and aging in this population to inform the development of culturally-relevant interventions. METHODS: Individual, semi-structured interviews were conducted with 30 Spanish-speaking immigrants over 60. Questions addressed knowledge about the brain, perceptions of healthy and unhealthy aging, ideas of how to take care of one's brain, and where knowledge was acquired. Responses were analyzed using thematic analysis. RESULTS: The following themes emerged: (1) Descriptions of the brain varied, from anatomy, cognition, and psychology to disease. (2) Perceptions of healthy aging included independence, memory, emotions, and orientation. (3) Ideas of how to care for the brain included physical, social, and cognitive engagement. (4) Knowledge was acquired in childhood, communities, healthcare settings, careers, and media. CONCLUSIONS: Results showed significant variability in knowledge. Findings may be leveraged to improve interventions that address brain health literacy disparities among older Latin American immigrants. CLINICAL IMPLICATIONS: Takeaways involve increasing education about the structure and functions of the brain, promoting realistic understandings of what nonnormative brain aging entails, and increasing knowledge of empirically-supported maintenance approaches. Dissemination may be increased via healthcare providers, community centers, churches, and media.


Assuntos
Demência , Emigrantes e Imigrantes , Humanos , América Latina , Hispânico ou Latino/psicologia , Encéfalo
13.
AJOB Neurosci ; 14(1): 32-44, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-34473932

RESUMO

Background: Newer "closed-loop" neurostimulation devices in development could, in theory, induce changes to patients' personalities and self-perceptions. Empirically, however, only limited data of patient and family experiences exist. Responsive neurostimulation (RNS) as a treatment for refractory epilepsy is the first approved and commercially available closed-loop brain stimulation system in clinical practice, presenting an opportunity to observe how conceptual neuroethical concerns manifest in clinical treatment.Methods: We conducted ethnographic research at a single academic medical center with an active RNS treatment program and collected data via direct observation of clinic visits and in-depth interviews with 12 patients and their caregivers. We used deductive and inductive analyses to identify the relationship between these devices and patient changes in personality and self-perception.Results: Participants generally did not attribute changes in patients' personalities or self-perception to implantation of or stimulation using RNS. They did report that RNS affected patients' experiences and conceptions of illness. In particular, the capacity to store and display electrophysiological data produced a common frame of reference and a shared vocabulary among patients and clinicians.Discussion: Empirical experiences of a clinical population being treated with closed-loop neuromodulation do not corroborate theoretical concerns about RNS devices described by neuroethicists and technology developers. However, closed-loop devices demonstrated an ability to change illness experiences. Even without altering identify and self-perception, they provided new cultural tools and metaphors for conceiving of epilepsy as an illness and of the process of diagnosis and treatment. These findings call attention to the need to situate neuroethical concerns in the broader contexts of patients' illness experiences and social circumstances.


Assuntos
Estimulação Encefálica Profunda , Epilepsia Resistente a Medicamentos , Epilepsia , Humanos , Epilepsia Resistente a Medicamentos/terapia , Epilepsia/terapia , Autoimagem
14.
J Alzheimers Dis ; 90(3): 1301-1320, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36245375

RESUMO

BACKGROUND: In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer. OBJECTIVE: We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers. METHODS: We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping. RESULTS: 40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer's disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home. CONCLUSION: Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.


Assuntos
Doença de Alzheimer , Demência , Geriatria , Humanos , Idoso , Cuidadores , Demência/terapia , Doença de Alzheimer/terapia , Cuidados Paliativos
15.
EClinicalMedicine ; 45: 101338, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35299655

RESUMO

Background: Studies of gender inequities in academic medicine suggest the negative impact of men's networking practices, but little is known about how they shape faculty experiences. Methods: In this qualitative study, in-depth, semi-structured interviews were conducted with 52 women and 52 men academic medicine faculty members at 16 institutions across the US in 2019. Interviews explored participants' experiences and perceptions of gender inequities in academic medicine, including perceptions of men's networking practices. Interviews were recorded and transcribed verbatim, and transcripts were analyzed using a mixture of deductively and inductively generated codes. Findings: Qualitative analysis of interview transcripts identified different dominant themes: (1) Women were often excluded from networking activities dominated by men, (2) Both women and men referred to men's networking practices in academic medicine, and believed they conferred benefits to members and excluded non-members from such benefits, (3) Participation in such networking activities yielded professional advantages, (4) Women made efforts to counteract their exclusion yet identified limits of those efforts. Interpretation: The data suggests that gender inequities in academic medicine might be associated with professional interactions that occur outside of the scope of professional work practices and in formal work sites. Additional research is needed to better understand practices such as informal networking activities and their impact in order to promote gender equity.

16.
J Geriatr Oncol ; 13(5): 594-599, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35125334

RESUMO

OBJECTIVES: Older adults under-enroll in early phase cancer clinical trials. There are limited data on their trial experiences, which hampers our ability to understand potential reasons and responses to under-enrollment. We aimed to explore older adults' experiences and deliberations with phase 1 trials. MATERIALS AND METHODS: We analyzed 101 in-depth interviews with 39 adults (average 2.6 interviews per participant) about their experiences with phase 1 trials. All respondents were ≥ 65 years and had advanced cancer. Interviews lasted 60-90 min and were audio-recorded, transcribed, and analyzed to identify respondents' understanding of clinical research, perceptions of early phase trials, and experiences with enrollment. RESULTS: Clinical trial participation was an interactive process that unfolded over time. Older adults relied on ongoing guidance and discussion with their oncologist to navigate the process. Respondents were generally interested in life-prolonging therapies, including enrollment in early phase clinical trials, but did not necessarily state this explicitly to their oncologist. While respondents did not mention age as a limitation to trials participation, participants age > 70 were less enthusiastic about participation and more often discussed their quality of life and weighed benefits of trial participation in the context of their remaining months of life. CONCLUSION: Early phase clinical trial enrollment is complex, and older adults rely on their oncologist to navigate this process. Acknowledging this complexity through shared decision-making may ensure that older adults have appropriate opportunities to enroll in early phase clinical trials and guard against inappropriate under-enrollment.


Assuntos
Neoplasias , Qualidade de Vida , Idoso , Ensaios Clínicos como Assunto , Humanos , Neoplasias/tratamento farmacológico , Seleção de Pacientes , Padrão de Cuidado
17.
Acad Med ; 97(1): 136-142, 2022 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-34495884

RESUMO

PURPOSE: This study examined how mentoring relationships may reinforce or mitigate gender inequities in academic medicine. METHOD: In-depth, semistructured interviews with medical school faculty members (52 women and 52 men) were conducted at 16 institutions across the United States in 2019. Institutions were recruited using a purposive sampling strategy to seek diversity in geography, ownership (private or public), and prestige. Within institutions, purposive sampling was used to recruit equal numbers of women and men and to seek diversity in degree type (MD, PhD), age, and career stage. A coding scheme was developed through iterative analysis of the interview transcripts. All interview transcripts were then coded with the goal of identifying intersections between mentorship and experiences of and responses to gender inequities. RESULTS: Four key themes at the intersection of mentoring relationships and gender inequities were identified. (1) Both women and men became aware of gender inequities in academic medicine through relationships with women mentors and mentees. (2) Both women and men mentors recognized the challenges their female mentees faced and made deliberate efforts to help them navigate an inequitable environment. (3) Both women and men mentors modeled work-family balance and created family friendly environments for their mentees. (4) Some women, but no men, reported being sexually harassed by mentors. CONCLUSIONS: This study shows that mentoring relationships may be a context in which gender inequities are acknowledged and mitigated. It also shows that mentoring relationships may be a context in which gender inequities, such as sexual harassment, may occur. Sexual harassment in academic medicine has been widely documented, and gender inequity in academic medicine has proved persistent. While mentoring relationships may have the potential to identify and mitigate gender inequities, this study suggests that this potential remains largely unrealized.


Assuntos
Tutoria , Mentores , Docentes de Medicina , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Faculdades de Medicina , Estados Unidos
18.
J Pain Symptom Manage ; 63(1): 160-170, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34157398

RESUMO

CONTEXT: The provision of potentially non-beneficial life-sustaining treatments (LSTs) remains a challenging problem. In 2005, legislation in France established an interprofessional process by which non-beneficial LSTs could be withheld or withdrawn, permitting exploration of the effects of such a legally-protected process and its implementation. OBJECTIVES: To characterize intensive care unit (ICU) interprofessional team decision-making and consensus-building practices regarding withholding and withdrawing of LSTs in two Parisian hospitals and to explore physician and nurse perceptions of and experiences with these practices. METHODS: This was an exploratory qualitative study utilizing thematic analysis of semi-structured, in-depth interviews of physicians and nurses purposively sampled based on level of training and experience from two hospitals in Paris, France. RESULTS: A total of 25 participants were interviewed. Participants reported that the two Parisian hospitals in this study have each created an interprofessional process for withholding or withdrawing non-beneficial LSTs, providing insight into how norms of decision-making respond to systems-level legal changes. Participants reported that these processes tended to be consistent across several domains: maintaining unified messaging with patients, empowering nurses to participate in end-of-life decision-making, reducing moral distress provoked by end-of-life decisions, and shaping the ethical milieu within which end-of-life decision-making takes place. CONCLUSIONS: The architecture of the interprofessional process created at two Parisian hospitals and its perceived benefits may be useful to clinicians and policy-makers attempting to establish processes, policies, or legislation directed at withholding or withdrawing potentially non-beneficial LSTs in the United States and elsewhere.


Assuntos
Assistência Terminal , Morte , Tomada de Decisões , França , Humanos , Unidades de Terapia Intensiva , Suspensão de Tratamento
19.
JAMA Netw Open ; 4(9): e2125843, 2021 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-34542616

RESUMO

Importance: Gender disparities in career advancement in academic medicine have persisted despite gender parity in medical school matriculation. Although numerous explanations for this gap exist, little is known about women's experiences of promotion and tenure in academic medicine. Objective: To examine women's experiences of promotion and tenure in academic medicine to uncover mechanisms associated with the gender disparity in career advancement. Design, Setting, and Participants: In this qualitative study, 52 in-depth, semistructured interviews with women academic medicine faculty members were conducted in 2019. The 52 participants were drawn from 16 medical schools across the US. Institutions were selected using a purposive sampling strategy to seek diversity of geography and ownership (private or public). Within institutions, purposive and snowball sampling were used to seek diversity with respect to respondents' degree type (MD, PhD, and MD and PhD), age, and career stage. Interview transcripts were analyzed using qualitative thematic analysis. Data analysis was performed from March to December 2020. Main Outcomes and Measures: Themes and subthemes in participants' experiences of promotion and tenure. Results: The 52 women in this study ranged in age from 34 to 82 years (mean [SD] age, 54.0 [10.7] years). Eighteen respondents (34.6%) held an MD, 4 (7.7%) held both an MD and PhD, and 30 (57.7%) held a PhD. Fourteen respondents (26.9%) were assistant professors at the time of the study, 8 (15.4%) were associate professors, and 30 (57.7%) were full professors. Four main themes within participants' experiences of promotion and tenure that pertain to gender inequities were identified: ambiguous or inconsistent criteria for promotion or tenure; lack of standard processes for reviewing applications and making decisions; vulnerability to malicious behavior of senior faculty, department chairs, and division chiefs; and women seeing men have different experiences of advancement. Conclusions and Relevance: The respondents' experiences of promotion and tenure suggest that promotion and tenure processes may be characterized by inconsistency and a lack of oversight, which have the potential to contribute to well-documented patterns of gender disparities in career advancement in academic medicine.


Assuntos
Mobilidade Ocupacional , Docentes de Medicina , Sexismo , Sucesso Acadêmico , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa , Faculdades de Medicina , Estados Unidos
20.
Am J Geriatr Psychiatry ; 29(11): 1079-1088, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34092458

RESUMO

OBJECTIVES: We aimed to investigate ways in which spirituality was conceptualized in relationship to maintaining brain health and healthy aging in a cohort of older adults who immigrated to the United States from diverse regions of Latin America, in order to ultimately develop culturally-tailored brain health promotion approaches. DESIGN: We conducted a qualitative study using semi-structured interviews. SETTING: Participants were recruited from community centers and by a memory care center at a large academic medical center. PARTICIPANTS: We interviewed 30 Spanish-speaking immigrants over age 60. Questions addressed perspectives about the brain, aging, and dementia. Interviews were coded for themes. MEASUREMENTS: Thematic analysis was used to analyze participants' responses. RESULTS: We identified 5 themes: (1) expressing gratitude to God for mental and physical health, (2) putting the onus of life and death in God's hands, (3) using church as a place to socialize and build community as an approach to leading a healthy lifestyle, (4) using prayer as nourishment for the soul and the brain, and (5) gaining inner-peace and calm, and thus maintaining a healthy life, due to a connection with God. CONCLUSION: The incorporation of customized spiritual interventions may be a mechanism by which to increase the effectiveness of brain health promotion efforts.


Assuntos
Emigrantes e Imigrantes , Envelhecimento Saudável , Idoso , Formação de Conceito , Humanos , América Latina , Espiritualidade , Estados Unidos
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