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2.
Am J Hosp Palliat Care ; : 10499091241276009, 2024 Aug 19.
Artigo em Inglês | MEDLINE | ID: mdl-39158935

RESUMO

BACKGROUND: Advance care planning involves discussing individuals' future medical treatment and care preferences. Nurses, due to their close relationships with patients and families, may be well-positioned to lead these discussions. Exploring the components and characteristics of nurse-led ACP interventions is essential for enhancing their implementation, effectiveness, and sustainability. OBJECTIVE: This scoping review aimed to explore the characteristics of nurse-led ACP interventions in adult patients, identify the populations and settings where these interventions have been utilized, and the outcomes of these interventions in the U.S. METHODS: A scoping review was conducted following Arksey and O'Malley's five-stage framework. Using keywords related to nurse-led ACP interventions, a comprehensive search was performed across PubMed, Web of Science, CINAHL, EMBASE, and PsycINFO databases. RESULTS: Twelve studies met the inclusion criteria. These studies were conducted in varied settings. Registered nurses, oncology nurse navigators, and other specialized nurses primarily delivered nurse-led ACP interventions. The interventions ranged from one to two sessions and utilized various models and resources such as the Five Wishes and Respecting Choices. CONCLUSIONS: Nurse-led ACP interventions have shown significant positive outcomes, including increased engagement in ACP, improved attitudes towards ADs, higher completion rates of ADs, and enhanced patient-surrogate congruence. These interventions are well-received by patients and can be implemented in diverse settings. However, a general guideline regarding nurse-led ACP interventions is needed to address the specific duration, sessions, and mode of delivery required for their optimal effectiveness.

3.
Oncol Nurs Forum ; 51(5): 457-465, 2024 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-39162789

RESUMO

OBJECTIVES: To develop and determine the acceptability of a group-based digital health psychoeducational intervention aimed at reducing cancer worry based on acceptance and commitment therapy for individuals at high risk for pancreatic cancer. SAMPLE & SETTING: 13 individuals at high risk for pancreatic cancer with a genetic variant or family history. METHODS & VARIABLES: Three groups met virtually for one hour each week for four weeks. These sessions provided psychoeducational materials. Digital resources provided mindfulness and educational content. Reported measurements included qualitative responses and participant-reported acceptability. RESULTS: All participants found the sessions to be useful and would recommend them to others. Recommendations from the first two groups included requests to access the content provided during the remote sessions, contributing to the creation of digital content for the third group. IMPLICATIONS FOR NURSING: Individuals at high risk for pancreatic cancer can benefit from psychoeducation to reduce cancer worry, which can be accomplished through digital psychoeducational interventions.


Assuntos
Neoplasias Pancreáticas , Educação de Pacientes como Assunto , Humanos , Neoplasias Pancreáticas/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Educação de Pacientes como Assunto/métodos , Idoso , Adulto , Terapia de Aceitação e Compromisso/métodos , Ansiedade/prevenção & controle , Ansiedade/psicologia
4.
Curr Oncol Rep ; 26(7): 773-783, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38777979

RESUMO

PURPOSE OF REVIEW: Family/unpaid caregivers play an important role in cancer care. This review aims to summarize caregiver communication experiences with healthcare professionals (HCPs). RECENT FINDINGS: The Caregiver-Centered Communication model defines five core functions that HCPs should achieve when interacting with caregivers, including fostering relationships, exchanging information, recognizing and responding to caregiver emotions, aiding in decision making, and assisting in patient care management. The literature shows that caregivers have both positive and negative communication experiences with HCPs with respect to these five core functions. Factors at the caregiver (e.g., demographic characteristics, information sources, caregiving duration, health status), patient (e.g., demographic and clinical characteristics), and HCP levels (e.g., time constraints in clinical settings, communication skills) are associated with caregiver-HCP communication quality. Studies further show that these communication experiences may affect caregiver outcomes, including quality of life, mental health, resilience, and satisfaction with cancer care. Moreover, poor quality caregiver-HCP communication is associated with patient readmission to the hospital and unmet care needs. Interventions for caregivers or patient-caregiver dyads have been shown to enhance caregiver confidence and increase their engagement in communication with HCPs. Interventions for HCPs have shown efficacy in improving their communication skills, particularly in involving caregivers in decision-making discussions. Given time constraints during medical visits, we suggest conducting a caregiver assessment by navigators prior to visits to understand their communication needs. Additionally, reimbursing HCPs for time spent communicating with caregivers during visits could be beneficial. More research is needed to better understand how to enhance caregiver-HCP communication quality.


Assuntos
Cuidadores , Comunicação , Pessoal de Saúde , Neoplasias , Humanos , Cuidadores/psicologia , Neoplasias/psicologia , Neoplasias/terapia , Pessoal de Saúde/psicologia , Qualidade de Vida , Adulto
5.
Neurol Clin Pract ; 14(2): e200278, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38455124

RESUMO

Background and Objectives: To assess the current structures, knowledge, and readiness to integrate palliative care (PC) into Parkinson disease (PD) care at Parkinson's Foundation Centers of Excellence (COE) in the United States. Methods: Three unique surveys were administered to health care professionals/staff at COEs to assess PC (1) resources, (2) knowledge and comfort, (3) clinical experience and processes, (4) barriers, and (5) readiness for implementation. Results: Response rates for the 3 surveys were 97%, 98%, and 56%. In total, 41% of COEs have access to outpatient PC specialists, 71% have mental health counseling, 82% have support groups, and 9% had very limited PC resources. Overall, 74% of providers believed persons with advanced PD should receive PC, and knowledge of PC fundamentals was good across providers. For high-needs persons with PD (PWP), only 16% of physicians and 24% of advanced practice providers made referrals to PC specialists ≥75% of the time, while 9% and 16% never made such referrals. Limited time, space, financing, and staffing were seen as major barriers to PC implementation. In total, 37% of providers were satisfied with their COE's ability to provide PC services. Most COEs report a culture open to change and appear well-positioned to implement PC in a more comprehensive fashion. Discussion: These results demonstrate the emergence of structures and processes to provide PC to persons with PD at COEs. They also identify concrete opportunities to strengthen integration of PC through educational, quality improvement, and advocacy efforts.

6.
J Geriatr Oncol ; 15(2): 101687, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-38302299

RESUMO

INTRODUCTION: Polypharmacy is prevalent in older adults with cancer and associated with multiple adverse outcomes. A single-site, cluster-randomized clinical trial will enroll older adults with cancer and polypharmacy starting chemotherapy and will assess the effectiveness and feasibility of deprescribing interventions by comparing two arms: a pharmacist-led deprescribing intervention and a patient educational brochure. MATERIALS AND METHODS: The study will be conducted in two phases. In phase I, focus groups and semi-structured individual interviews will guide adaptation of deprescribing interventions for the oncology clinic (phase Ia), and eight patients will undergo the pharmacist-led deprescribing intervention with iterative adaptations (phase Ib). In phase II, a pilot cluster-randomized trial (n = 72) will compare a pharmacist-led deprescribing intervention with a patient education brochure, with treating oncologists as the cluster. Both efficacy (relative dose intensity of planned chemotherapy, potentially inappropriate medications successfully deprescribed, chemotherapy toxicity, functional status, hospitalizations, falls, and symptoms) and implementation outcomes (barriers and facilitators) will be assessed. DISCUSSION: This study is anticipated to provide pilot data to inform a nationwide randomized clinical trial of deprescribing in older adults starting cancer treatment. The cluster randomization is intended to provide an initial estimate for the intervention effect as well as oncologists' intra-class correlation coefficient. Deprescribing interventions may improve outcomes in older adults starting cancer treatment, but these interventions are understudied in this population, and it is unknown how best to implement them into oncology practice. The results of this trial will inform the design of large, randomized phase III trials of deprescribing. CLINICALTRIALS: gov Identifier:NCT05046171. Date of registration: September 16, 2021.


Assuntos
Neoplasias , Polimedicação , Humanos , Idoso , Prescrição Inadequada/prevenção & controle , Lista de Medicamentos Potencialmente Inapropriados , Hospitalização , Farmacêuticos , Neoplasias/tratamento farmacológico , Ensaios Clínicos Controlados Aleatórios como Assunto , Ensaios Clínicos Fase II como Assunto
7.
J Am Med Dir Assoc ; 25(1): 138-145.e6, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37913819

RESUMO

OBJECTIVES: Medications with a higher risk of harm or that are unlikely to be beneficial are used by nearly all older patients in home health care (HHC). The objective of this study was to understand stakeholders' perspectives on challenges in deprescribing these medications for post-acute HHC patients. DESIGN: Qualitative individual interviews were conducted with stakeholders involved with post-acute deprescribing. SETTING AND PARTICIPANT: Older HHC patients, HHC nurses, pharmacists, and primary/acute care/post-acute prescribers from 9 US states participated in individual qualitative interviews. MEASURES: Interview questions were focused on the experience, processes, roles, training, workflow, and challenges of deprescribing in hospital-to-home transitions. We used the constant comparison approach to identify and compare findings among patient, prescriber, and pharmacist and HHC nurse stakeholders. RESULTS: We interviewed 9 older patients, 11 HHC nurses, 5 primary care physicians (PCP), 3 pharmacists, 1 hospitalist, and 1 post-acute nurse practitioner. Four challenges were described in post-acute deprescribing for HHC patients. First, PCPs' time constraints, the timing of patient encounters after hospital discharge, and the lack of prioritization of deprescribing make it difficult for PCPs to initiate post-acute deprescribing. Second, patients are often confused about their medications, despite the care team's efforts in educating the patients. Third, communication is challenging between HHC nurses, PCPs, specialists, and hospitalists. Fourth, the roles of HHC nurses and pharmacists are limited in care team collaboration and discussion about post-acute deprescribing. CONCLUSIONS AND IMPLICATIONS: Post-acute deprescribing relies on multiple parties in the care team yet it has challenges. Interventions to align the timing of deprescribing and that of post-acute care visits, prioritize deprescribing and allow clinicians more time to complete related tasks, improve medication education for patients, and ensure effective communication in the care team with synchronized electronic health record systems are needed to advance deprescribing during the transition from hospital to home.


Assuntos
Desprescrições , Serviços de Assistência Domiciliar , Humanos , Idoso , Pesquisa Qualitativa , Transferência de Pacientes , Cuidados Semi-Intensivos
8.
Parkinsonism Relat Disord ; 119: 105982, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38160602

RESUMO

INTRODUCTION: Outpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation. METHODS: Using qualitative descriptive research design, we completed semi-structured interviews with 47 patients and carepartners prior to the project implementation. De-identified transcripts of interviews were coded and analyzed. RESULTS: Five themes were identified that describe patients' and carepartners' palliative care knowledge, perceptions, needs and preferences: (a) Patients and carepartners have varied knowledge and perceptions of palliative care (b) Non-motor symptoms are challenging for patients and carepartners, (c) Addressing patients' grief and emotional needs is important to patients and carepartners, (d) Carepartners want a place for emotional care, well-being, and strategizing and (e) Patients and carepartners desire anticipatory guidance and care planning. Study participants desired guidance to manage non-motor symptoms, support for patients' emotional needs and for carepartners, and for anticipatory guidance to guide future planning. CONCLUSIONS: Despite varied palliative care knowledge, PD patients and carepartners universally desire care that addresses their palliative care needs. Palliative care education and integration of palliative care approaches into standard care may facilitate increased acceptance of outpatient palliative care throughout the disease trajectory.


Assuntos
Cuidados Paliativos , Doença de Parkinson , Humanos , Doença de Parkinson/terapia , Doença de Parkinson/psicologia , Qualidade de Vida , Pesquisa Qualitativa , Pacientes
9.
Support Care Cancer ; 31(12): 636, 2023 Oct 17.
Artigo em Inglês | MEDLINE | ID: mdl-37847423

RESUMO

PURPOSE: To describe emotional barriers and facilitators to deprescribing (the planned reduction or discontinuation of medications) in older adults with cancer and polypharmacy. METHODS: Virtual focus groups were conducted over Zoom with 5 key informant groups: oncologists, oncology nurses, primary care physicians, pharmacists, and patients. All groups were video- and audio-recorded and transcribed verbatim. Focus group transcripts were analyzed using inductive content analysis, and open coding was performed by two coders. A codebook was generated based on the initial round of open coding and updated throughout the analytic process. Codes and themes were discussed for each transcript until consensus was reached. Emotion coding (identifying text segments expressing emotion, naming the emotion, and assigning a label of positive or negative) was performed by both coders to validate the open coding findings. RESULTS: All groups agreed that polypharmacy is a significant problem. For clinicians, emotional barriers to deprescribing include fear of moral judgment from patients and colleagues, frustration toward patients, and feelings of incompetence. Oncologists and patients expressed ambivalence about deprescribing due to role expectations that physicians "heal with med[ication]s." Emotional facilitators of deprescribing included the involvement of pharmacists, who were perceived to be neutral, discerning experts. Pharmacists described emotionally aware communication strategies when discussing deprescribing with other clinicians and expressed increased awareness of patient context. CONCLUSION: Deprescribing can elicit strong and predominantly negative emotions among clinicians and patients which could inhibit deprescribing interventions. The involvement of pharmacists in deprescribing interventions could mitigate these emotional barriers. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05046171 . Date of registration: September 16, 2021.


Assuntos
Desprescrições , Neoplasias , Humanos , Idoso , Polimedicação , Atitude do Pessoal de Saúde , Emoções , Neoplasias/tratamento farmacológico
10.
Neurol Clin Pract ; 13(6): e200214, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37854173

RESUMO

Background and Objectives: People with Parkinson disease (PWP) and their care partners have high palliative care needs resulting from disabling motor and nonmotor symptoms. There is growing support for palliative care (PC) approaches to Parkinson disease. However, little is known regarding the extent to which the palliative needs of PWP and care partners are currently being met. This study's primary objective is to describe PWP's and care partners' perceptions of the extent to which their PC needs are being met. Secondary objectives are to describe their perceptions of the quality of clinical communication and their knowledge of PC. Methods: PWPs and care partners (n = 12,995) who had consented to receiving surveys from the Parkinson's Foundation were emailed an electronic survey. PC was operationalized as comprising 5 key components: systematic assessment and management of (1) nonmotor symptoms, (2) PWPs' emotional and spiritual needs, (3) care partners' needs, (4) the completion of annual advance care planning, and (5) timely referrals to specialist palliative care and hospice when appropriate. Results: A total 1,882 individuals (1,266 PWP and 616 care partners) responded to the survey (response rate 14.5%). Few PWP (22%) reported that their neurologists never asked regarding bothersome nonmotor symptoms or did so or only if they brought it up. Fifty percent of PWP reported that pain as a specific nonmotor symptom was never managed or managed only if they brought it up. Similarly, PWPs' emotional and spiritual needs (55%), care partners' well-being (57%), and completion of advance care planning documentation (79%) were never addressed or only addressed if PWP brought it up. The quality of clinical communication was generally rated as open and honest (64% PWP). Fewer PWP (30%) reported that doctors helped them deal with the uncertainties of Parkinson disease. Most PWP (85%) reported being knowledgeable regarding PC, and 68% reported that the goal of PC was to help friends and family cope with the illness. Discussion: Although some elements of PC are currently being addressed in routine care for PWP, there are many gaps and opportunities for improvement. These data may facilitate focused attention and development of resources to improve the quality and availability of PC for Parkinson disease.

11.
Clin Ther ; 45(10): 947-956, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37640614

RESUMO

PURPOSE: Nearly all older patients receiving postacute home health care (HHC) use potentially inappropriate medications (PIMs) that carry a risk of harm. Deprescribing can reduce and optimize the use of PIMs, yet it is often not conducted among HHC patients. The objective of this study was to gather perspectives from patient, practitioner, and HHC clinician stakeholders on tasks that are essential to postacute deprescribing in HHC. METHODS: A total of 44 stakeholders, including 14 HHC patients, 15 practitioners (including 9 primary care physicians, 4 pharmacists, 1 hospitalist, and 1 nurse practitioner), and 15 HHC nurses, participated. The stakeholders were from 12 US states, including New York (n = 29), Colorado (n = 2), Connecticut (n = 1), Illinois (n = 2), Kansas (n = 2), Massachusetts (n = 1), Minnesota (n = 1), Mississippi (n = 1), Nebraska (n = 1), Ohio (n = 1), Tennessee (n = 1), and Texas (n = 2). First, individual interviews were conducted by experienced research staff via video conference or telephone. Second, the study team reviewed all interview transcripts and selected interview statements regarding stakeholders' suggestions for important tasks needed for postacute deprescribing in HHC. Third, concept mapping was conducted in which stakeholders sorted and rated selected interview statements regarding importance and feasibility. A content analysis was conducted of data collected in the individual interviews, and a mixed-method analysis was conducted of data collected in the concept mapping. FINDINGS: Four essential tasks were identified for postacute deprescribing in HHC: (1) ongoing review and assessment of medication use, (2) patent-centered and individualized plan of deprescribing, (3) timely and efficient communication among members of the care team, and (4) continuous and tailored medication education to meet patient needs. Among these tasks, developing patient-centered deprescribing considerations was considered the most important and feasible, followed by medication education, review and assessment of medication use, and communication. IMPLICATIONS: Deprescribing during the transition of care from hospital to home requires the following: continuous medication education for patients, families, and caregivers; ongoing review and assessment of medication use; patient-centered deprescribing considerations; and effective communication and collaboration among the primary care physician, HHC nurse, and pharmacist.


Assuntos
Desprescrições , Serviços de Assistência Domiciliar , Cuidado Transicional , Humanos , Lista de Medicamentos Potencialmente Inapropriados , Transição do Hospital para o Domicílio , Polimedicação
12.
ANS Adv Nurs Sci ; 46(1): 88-100, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36044351

RESUMO

Kumpfer's resilience framework (KRF) was initially developed from evidence on resilience and its predictors among at-risk youth. This framework has been expanded to guide resilience research in diverse populations facing a variety of stressors. However, KRF's strengths and weaknesses have not been evaluated since its publication. Guided by Walker and Avant's method, an analysis of KRF was conducted drawn from 41 publications. A revised KRF diagram was proposed on the basis of the analysis to improve clarity, consistency, logical structure, and parsimony in the diagram of KRF. Overall, KRF provides a useful, generalizable, and testable theoretical framework for future resilience research.


Assuntos
Resiliência Psicológica , Adolescente , Humanos , Projetos de Pesquisa
13.
Am J Hosp Palliat Care ; 40(7): 784-792, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35943434

RESUMO

Aim: To understand Parkinson's Disease (PD) care partners' a) specific challenges that led to worsening strain and b) their suggestions for supports to help them during the ongoing pandemic. Method: Using a qualitative descriptive design, semi-structured interviews with family care partners (n = 19) were completed. Participants were recruited from 10 sites across the United States that varied in size, demographics of patient population served, and geographic location (urban, suburban, rural). Interviews were audio-recorded, de-identified, transcribed verbatim, and coded in a phased manner. The research team analyzed the data and identified themes. Results: During the pandemic, the already difficult task of caregiving was made worse by having to choose between poor options. Five themes exemplified PD care partner experiences: (1) Managing risks and benefits of medical care in settings outside the home vs meeting these needs at home; (2) Struggling to maintain employment benefits with the costs of care and risks of bringing in outside caregivers; (3) Struggling to balance caregiving and self-care; (4) Struggling to be supportive and taking on new caregiving roles in the face of less support services; and (5) Wanting social connections and feeling pressured to maintain isolation. Care partners wanted timely access to, and guidance from healthcare teams to help them. Conclusions: Care partner burden was worsened by lack of guidance when confronted by choices that could lead to negative outcomes. Movement disorder and palliative care providers may be able to alleviate some care partner burden through building systems for timely access and guidance.


Assuntos
Cuidadores , Doença de Parkinson , Humanos , Doença de Parkinson/terapia , Pandemias , Cuidados Paliativos , Autocuidado , Pesquisa Qualitativa
14.
Soc Sci Med ; 317: 115546, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36509614

RESUMO

Prior interventions have repeatedly failed to decrease the prescription and receipt of treatments and procedures that confer more harm than benefit at the End-of-Life (EoL); new approaches to intervention are needed. Ideally, future interventions would be informed by a social-ecological conceptual model that explains EoL healthcare utilization patterns, but current models ignore two facts: (1) healthcare is an inherently social activity, involving clinical teams and patients' social networks, and (2) emotions influence social activity. To address these omissions, we scaffolded Terror Management Theory and Socioemotional Selectivity Theory to create the Transtheoretical Model of Irrational Biomedical Exuberance (TRIBE). Based on Terror Management Theory, TRIBE suggests that the prospect of patient death motivates healthcare teams to conform to a biomedical norm of care, even when clinicians believe that biomedical interventions will likely be unhelpful. Based on Socioemotional Selectivity Theory, TRIBE suggests that the prospect of dwindling time motivates families to prioritize emotional goals, and leads patients to consent to disease-directed treatments they know will likely be unhelpful, as moral emotions motivate deference to the perceived emotional needs of their loved ones. TRIBE is unique among models of healthcare utilization in its acknowledgement that moral emotions and processes (e.g., shame, compassion, regret-avoidance) influence healthcare delivery, patients' interactions with family members, and patients' outcomes. TRIBE is especially relevant to potentially harmful EoL care in the United States, and it also offers insights into the epidemics of overtreatment in healthcare settings worldwide. By outlining the role of socioemotional processes in the care of persons with serious conditions, TRIBE underscores the critical need for psychological innovation in interventions, health policy and research on healthcare utilization.


Assuntos
Assistência Terminal , Modelo Transteórico , Humanos , Estados Unidos , Assistência Terminal/psicologia , Família/psicologia , Atenção à Saúde , Morte
15.
Oncol Nurs Forum ; 49(3): 193-200, 2022 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-35446837

RESUMO

PURPOSE: Although risk-reduction interventions for inherited cancer can significantly reduce cancer risk, they may also lead to distressing symptoms. It is not well understood how clinicians support patients in managing such concerns. This scoping review describes nonsurgical, nonpharmacologic interventions for adults with inherited cancer risk who have completed risk reduction. LITERATURE SEARCH: Five publications were identified following a database review for English-language articles published from 2015 to 2020. DATA EVALUATION: Sample, content, methods, and outcomes of included interventions are summarized. RESULTS: The study identified five interventions. IMPLICATIONS FOR NURSING: Future research should target a broader variety of heritable cancers to identify effective strategies for addressing challenges with risk-reduction interventions for inherited cancer.


Assuntos
Neoplasias , Qualidade de Vida , Adulto , Humanos , Neoplasias/terapia , Comportamento de Redução do Risco
16.
J Pain Symptom Manage ; 59(4): 894-915.e14, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31639495

RESUMO

CONTEXT: There has been surprisingly little attention to conceptual and methodological issues that influence the measurement of discretionary utilization at the end of life (DIAL), an indicator of quality care. OBJECTIVE: The objectives of this study were to examine how DIALs have been operationally defined and identify areas where evidence is biased or inadequate to inform practice. METHODS: We conducted a scoping review of the English language literature published from 1/1/04 to 6/30/17. Articles were eligible if they reported data on ≥2 DIALs within 100 days of the deaths of adults aged ≥18 years. We explored the influence of research design on how researchers measure DIALs and whether they examine demographic correlates of DIALs. Other potential biases and influences were explored. RESULTS: We extracted data from 254 articles published in 79 journals covering research conducted in 29 countries, mostly focused on cancer care (69.1%). More than 100 DIALs have been examined. Relatively crude, simple variables (e.g., intensive care unit admissions [56.9% of studies], chemotherapy [50.8%], palliative care [40.0%]) have been studied more frequently than complex variables (e.g., burdensome transitions; 7.3%). We found considerable variation in the assessment of DIALs, illustrating the role of research design, professional norms and disciplinary habit. Variables are typically chosen with little input from the public (including patients or caregivers) and clinicians. Fewer than half of the studies examined age (44.6%), gender (37.3%), race (26.5%), or socioeconomic (18.5%) correlates of DIALs. CONCLUSION: Unwarranted variation in DIAL assessments raises difficult questions concerning how DIALs are defined, by whom, and why. We recommend several strategies for improving DIAL assessments. Improved metrics could be used by the public, patients, caregivers, clinicians, researchers, hospitals, health systems, payers, governments, and others to evaluate and improve end-of-life care.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Adolescente , Adulto , Hospitalização , Humanos , Unidades de Terapia Intensiva , Cuidados Paliativos
17.
J Palliat Med ; 22(11): 1394-1400, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31237459

RESUMO

Background: Care teams are increasingly expected to attend to the needs of patient's personal caregivers (e.g., family members). Improving communication among oncologists, patients with advanced cancer, and their personal caregivers might enhance caregivers' experiences of end-of-life (EoL) cancer care and bereavement outcomes. Objective: To explore the effects of the Values and Options in Cancer Care intervention on caregivers' experiences of EoL care and bereavement outcomes. Design: We developed a brief behavioral intervention to improve communication among oncologists, patients with advanced cancer, and their personal caregivers. The intervention was designed to help patients/caregivers ask questions, express concerns, and help oncologists respond effectively. We randomly assigned oncologists (and their patients/caregivers) to the intervention or usual care. Setting/Subjects: Medical oncologists in NY and CA; patients/personal caregivers with advanced cancer. Measurements: Two months after the patient's death, caregivers completed three instruments assessing their experiences of EoL care. Seven months after the patient's death, caregivers completed the Prolonged Grief Disorder-13 (PG-13; primary prespecified outcome), the Purpose-in-Life scale, and scales assessing mental health function, depression, and anxiety. Results: The intervention did not significantly improve caregivers' scores on the PG-13 (p = 0.21), mental health function, depression, or anxiety, but it did improve purpose-in-life scores (p = 0.018). Cohen's d (95% confidence interval) for all three experiences of EoL care outcomes were promising, ranging from 0.22 (-0.19 to 0.63) to 0.39 (-0.07 to 0.86) although none was statistically significant. Conclusion: Preliminary findings show promise that scalable interventions in cancer care settings may improve caregiver experiences with cancer care and some bereavement outcomes.


Assuntos
Luto , Sobrecarga do Cuidador/psicologia , Comunicação , Neoplasias , Assistência Terminal , Idoso , California , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Oncologia , New York , Relações Médico-Paciente
18.
Psychooncology ; 28(6): 1286-1292, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31020758

RESUMO

OBJECTIVE: Clinicians frequently overestimate survival time among seriously ill patients, and this can result in medical treatment at end of life that does not reflect the patient's preferences. Little is known, however, about the sources of clinicians' optimistic bias in survival estimation. Related work in social networks and experimental psychology demonstrates that psychological states-such as optimism-can transfer from one person to another. METHODS: We directly observed and audio recorded 189 initial inpatient palliative care consultations among hospitalized patients with advanced cancer. Patients self-reported their level of trait optimism and expectations for survival prognosis prior to the palliative care consultation, and the palliative care clinicians rated their expectations for the patient's survival time following the initial conversation with the patient. We followed patient mortality for 6 months. RESULTS: Patient optimism was associated with clinician overestimation of their survival in a dose-response relationship. Clinicians were approximately three times as likely to overestimate the survival of patients endorsing both high trait optimism and optimistic ratings of their survival time compared with neither (OR: 2.95; 95% CI: 1.24-7.02). This association was not attenuated by adjustment for age, gender, race, ethnicity, education, income, cancer type, functional status, quality of life, or white blood cell count (ORadj : 3.45; 95% CI: 1.24-9.66). CONCLUSION: Patients' optimism may have some influence over their clinicians' prognostic judgments.


Assuntos
Neoplasias/diagnóstico , Neoplasias/psicologia , Otimismo , Cuidados Paliativos/psicologia , Sobrevida/psicologia , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Qualidade de Vida/psicologia
19.
J Pain Symptom Manage ; 58(2): 208-215.e1, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31004774

RESUMO

CONTEXT: Although patient and physician characteristics are thought to be predictive of discretionary interventions at the end of life (EoL), few studies have data on both parties. OBJECTIVE: To test the hypothesis that patient preferences and physician attitudes are both independently associated with discretionary interventions at the EoL. METHODS: We report secondary analyses of data collected prospectively from physicians (n = 38) and patients with advanced cancer (n = 265) in the Values and Options in Cancer Care study. Predictor variables were patient attitudes toward EoL care and physician-reported comfort with medical paternalism, assessed indirectly using a modified version of the Control Preference Scale. We explored whether the magnitude of the physician variable was influenced by the inclusion of particular patient treatment-preference variables (i.e., effect modification). Outcomes were a chemotherapy use score (≤14 days before death [scored 2], 15-31 days before death [scored 1], and >31 days [scored 0]) and an emergency department visit/inpatient admission score (two or more admissions in the last 31 days [scored 2], one admission [1], and 0 admissions [0]) in the last month of life. RESULTS: Chemotherapy scores were nearly 0.25 points higher if patients expressed a preference for experimental treatments with unknown benefit at study entry (0.238 points, 95% CI = 0.047-0.429) or reported an unfavorable attitude toward palliative care (0.247 points, 95% CI = 0.047-0.450). A two-standard deviation difference in physician comfort with medical paternalism corresponded to standardized effects of 0.35 (95% CI = 0.03-0.66) for chemotherapy and 0.33 (95% CI = 0.04-0.61) for emergency department visits/inpatient admissions. There was no evidence of effect modification. CONCLUSION: Patient treatment preferences and physician attitudes are independently associated with higher levels of treatment intensity before death. Greater research, clinical, and policy attention to patient treatment preferences and physician comfort with medical paternalism might lead to improvements in care of patients with advanced disease.


Assuntos
Atitude do Pessoal de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos na Terminalidade da Vida , Preferência do Paciente , Assistência Terminal , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Paternalismo , Estudos Prospectivos
20.
Patient Educ Couns ; 102(6): 1098-1103, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30642715

RESUMO

OBJECTIVE: We examined whether conversations involving Black or Latino patients with advanced cancer differ in the presence or characteristics of prognosis communication. METHODS: We audio-recorded initial consultations between 54 palliative care clinicians and 231 hospitalized people with advanced cancer. We coded for the presence and characteristics of prognosis communication. We examined whether the presence or characteristics of prognosis communication differed by patients' self-reported race/ethnicity. RESULTS: In 231 consultations, 75.7% contained prognosis communication. Prognosis communication was less than half as likely to occur during conversations with Black or Latino patients (N = 48) compared to others. Among consultations in which prognosis was addressed, those involving Black or Latino patients were more than 8 times less likely to contain optimistically cued prognoses compared to others. CONCLUSION: Prognosis communication occurred less frequently for Black and Latino patients and included fewer optimistic cues than conversations with other patients. More work is needed to better understand these observed patterns of prognosis communication that vary by race and ethnicity. PRACTICE IMPLICATIONS: Growing evidence supports prognosis communication being important for end-of-life decision-making and disproportionately rare among non-White populations. Therefore, our findings identify a potentially salient target for clinical interventions that are focused on ameliorating disparities in end-of-life care.


Assuntos
Etnicidade/psicologia , Comunicação em Saúde , Neoplasias/etnologia , Neoplasias/terapia , Cuidados Paliativos , Relações Médico-Paciente , Encaminhamento e Consulta , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Planejamento de Assistência ao Paciente , Educação de Pacientes como Assunto , Prognóstico
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