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1.
BMC Palliat Care ; 23(1): 48, 2024 Feb 21.
Article in English | MEDLINE | ID: mdl-38378532

ABSTRACT

BACKGROUND: EM Talk is a communication skills training program designed to improve emergency providers' serious illness conversational skills. Using the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework, this study aims to assess the reach of EM Talk and its effectiveness. METHODS: EM Talk consisted of one 4-h training session during which professional actors used role-plays and active learning to train providers to deliver serious/bad news, express empathy, explore patients' goals, and formulate care plans. After the training, emergency providers filled out an optional post-intervention survey, which included course reflections. Using a multi-method analytical approach, we analyzed the reach of the intervention quantitatively and the effectiveness of the intervention qualitatively using conceptual content analysis of open-ended responses. RESULTS: A total of 879 out of 1,029 (85%) EM providers across 33 emergency departments completed the EM Talk training, with the training rate ranging from 63 to 100%. From the 326 reflections, we identified meaning units across the thematic domains of improved knowledge, attitude, and practice. The main subthemes across the three domains were the acquisition of Serious Illness (SI) communication skills, improved attitude toward engaging qualifying patients in SI conversations, and commitment to using these learned skills in clinical practice. CONCLUSION: Our study showed the extensive reach and the effectiveness of the EM Talk training in improving SI conversation. EM Talk, therefore, can potentially improve emergency providers' knowledge, attitude, and practice of SI communication skills. TRIAL REGISTRATION: Clinicaltrials.gov: NCT03424109; Registered on January 30, 2018.


Subject(s)
Emergency Medicine , Physicians , Humans , Clinical Competence , Communication , Emergency Medicine/education
2.
J Emerg Nurs ; 50(2): 225-242, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37966418

ABSTRACT

INTRODUCTION: This study aimed to assess emergency nurses' perceived barriers toward engaging patients in serious illness conversations. METHODS: Using a mixed-method (quant + QUAL) convergent design, we pooled data on the emergency nurses who underwent the End-of-Life Nursing Education Consortium training across 33 emergency departments. Data were extracted from the End-of-Life Nursing Education Consortium post-training questionnaire, comprising a 5-item survey and 1 open-ended question. Our quantitative analysis employed a cross-sectional design to assess the proportion of emergency nurses who report that they will encounter barriers in engaging seriously ill patients in serious illness conversations in the emergency department. Our qualitative analysis used conceptual content analysis to generate themes and meaning units of the perceived barriers and possible solutions toward having serious illness conversations in the emergency department. RESULTS: A total of 2176 emergency nurses responded to the survey. Results from the quantitative analysis showed that 1473 (67.7%) emergency nurses reported that they will encounter barriers while engaging in serious illness conversations. Three thematic barriers-human factors, time constraints, and challenges in the emergency department work environment-emerged from the content analysis. Some of the subthemes included the perceived difficulty of serious illness conversations, delay in daily throughput, and lack of privacy in the emergency department. The potential solutions extracted included the need for continued training, the provision of dedicated emergency nurses to handle serious illness conversations, and the creation of dedicated spaces for serious illness conversations. DISCUSSION: Emergency nurses may encounter barriers while engaging in serious illness conversations. Institutional-level policies may be required in creating a palliative care-friendly emergency department work environment.


Subject(s)
Emergency Service, Hospital , Nurses , Humans , United States , Cross-Sectional Studies , Surveys and Questionnaires , Death
3.
BMC Palliat Care ; 21(1): 22, 2022 Feb 15.
Article in English | MEDLINE | ID: mdl-35168622

ABSTRACT

BACKGROUND: Emergency department (ED) visits among older adults are common near the end of life. Palliative care has been shown to reduce ED visits and to increase quality of life among patients, but recruitment into these programs is often challenging. This descriptive analysis explores the barriers to enrolling seriously ill patients scheduled for discharge from the ED into palliative care research. METHODS: This descriptive sub-study aims to assess the reasons why patients with advanced illness scheduled for discharge home from 11 EDs across the United States decline to participate in Emergency Medicine Palliative Care Access (EMPallA), a Phase IV randomized controlled trial (RCT) comparing two modes of palliative care delivery. Our aim was to understand why patients decline to enroll to improve future recruitment rates and expand care for patients discharged home from the ED. Research coordinators documented reasons that patients declined to enroll in the larger EMPallA trial; reasons for refusing participation were independently analyzed by two researchers to identify overarching themes. RESULTS: Enrollment rate across all sites was 45%; of the 504 eligible patients who declined participation, 47% (n = 237) declined for reasons related to illness severity. 28% of refusals (n = 143) were related to the mode of palliative care delivery, while 24% (n = 123) were due to misconceptions or stigma related to palliative care. Less commonly, patients refused due to general research barriers (16.5%), family/caregiver barriers (11.7%), and physician-related barriers (< 1%). CONCLUSIONS: Patients with advanced illnesses presenting to the ED often refuse to participate in palliative care research due to the severity of their illness, the mode of care delivery, and misconceptions about palliative care. In contrast with other studies, our study found minimal physician gatekeeping, which may be the result of both changing attitudes toward palliative care and the nature of the ED setting. Robust training programs are crucial to overcome these misconceptions and to educate patients and providers about the role of palliative care. Future palliative care programs and study designs should recognize the burden this vulnerable population endures and consider alternative modes of care delivery in an effort to increase participation and enrollment. CLINICAL TRIALS REGISTRATION: NCT03325985 , October 30, 2017.


Subject(s)
Emergency Medicine , Hospice and Palliative Care Nursing , Aged , Emergency Service, Hospital , Humans , Palliative Care , Quality of Life
4.
J Emerg Nurs ; 48(3): 266-277, 2022 May.
Article in English | MEDLINE | ID: mdl-35172928

ABSTRACT

INTRODUCTION: Effective communication is essential to good health care, and hearing loss disrupts patient-provider communication. For the more than 2 million veterans with severe hearing loss, communication is particularly challenging in noisy health care environments such as emergency departments. The purpose of this qualitative study was to describe patient and provider perspectives of feasibility and potential benefit of providing a hearing assistance device, a personal amplifier, during visits to an emergency department in an urban setting affiliated with the Department of Veterans Affairs. METHODS: This qualitative descriptive study was conducted in parallel with a randomized controlled study. We completed a semistructured interview with 11 veterans and 10 health care providers to elicit their previous experiences with patient-provider communication in the ED setting and their perspectives on hearing screening and using the personal amplifier in the emergency department. Interview data were analyzed using content analysis and Atlas.ti V8.4 software (Scientific Software Development GmbH, Berlin, Germany). RESULTS: The veteran sample (n = 11) had a mean age of 80.3 years (SD = 10.2). The provider sample included 7 nurses and 3 physicians. In the ED setting, hearing loss disrupts patient-provider communication. Screening for hearing loss in the emergency department was feasible except in urgent/emergent cases. The use of the personal amplifier made communication more effective and less effortful for both veterans and providers. DISCUSSION: Providing the personal amplifier improved the ED experience for veterans and offers a promising intervention that could improve health care quality and safety for ED patient populations.


Subject(s)
Hearing Loss , Veterans , Aged, 80 and over , Emergency Service, Hospital , Hearing , Hearing Loss/diagnosis , Humans , Qualitative Research , United States , United States Department of Veterans Affairs
5.
Med Care ; 59(Suppl 4): S336-S343, 2021 08 01.
Article in English | MEDLINE | ID: mdl-34228015

ABSTRACT

BACKGROUND: Measuring the effectiveness of transitional care interventions has historically relied on health care utilization as the primary outcome. Although the Care Transitions Measure was the first outcome measure specifically developed for transitional care, its applicability beyond the hospital-to-home transition is limited. There is a need for patient-centered outcome measures (PCOMs) to be developed for transitional care settings (ie, TC-PCOMs) to ensure that outcomes are both meaningful to patients and relevant to the particular care transition. The overall objective of this paper is to describe the opportunities and challenges of integrating TC-PCOMs into research and practice. METHODS AND RESULTS: This narrative review was conducted by members of the Patient-Centered Outcomes Research Institute (PCORI) Transitional Care Evidence to Action Network. We define TC-PCOMs as outcomes that matter to patients because they account for their individual experiences, concerns, preferences, needs, and values during the transition period. The cardinal features of TC-PCOMs should be that they are developed following direct input from patients and stakeholders and reflect their lived experience during the transition in question. Although few TC-PCOMs are currently available, existing patient-reported outcome measures could be adapted to become TC-PCOMs if they incorporated input from patients and stakeholders and are validated for the relevant care transition. CONCLUSION: Establishing validated TC-PCOMs is crucial for measuring the responsiveness of transitional care interventions and optimizing care that is meaningful to patients.


Subject(s)
Patient Readmission/standards , Patient Reported Outcome Measures , Quality Assurance, Health Care/methods , Transitional Care/standards , Humans
6.
Med Care ; 59(Suppl 4): S370-S378, 2021 08 01.
Article in English | MEDLINE | ID: mdl-34228019

ABSTRACT

BACKGROUND: Stakeholder involvement in health care research has been shown to improve research development, processes, and dissemination. The literature is developing on stakeholder engagement methods and preliminarily validated tools for evaluating stakeholder level of engagement have been proposed for specific stakeholder groups and settings. OBJECTIVES: This paper describes the methodology for engaging a Study Advisory Committee (SAC) in research and reports on the use of a stakeholder engagement survey for measuring level of engagement. METHODS: Stakeholders with previous research connections were recruited to the SAC during the planning process for a multicenter randomized control clinical trial, which is ongoing at the time of this writing. All SAC meetings undergo qualitative analysis, while the Stakeholder Engagement Survey instrument developed by the Patient-Centered Outcomes Research Institute (PCORI) is distributed annually for quantitative evaluation. RESULTS: The trial's SAC is composed of 18 members from 3 stakeholder groups: patients and their caregivers; patient advocacy organizations; and health care payers. After an initial in-person meeting, the SAC meets quarterly by telephone and annually in-person. The SAC monitors research progress and provides feedback on all study processes. The stakeholder engagement survey reveals improved engagement over time as well as continued challenges. CONCLUSIONS: Stakeholder engagement in the research process has meaningfully contributed to the study design, patient recruitment, and preliminary analysis of findings.


Subject(s)
Health Services Research/methods , Palliative Care , Patient Outcome Assessment , Stakeholder Participation , Transitional Care , Humans , Pragmatic Clinical Trials as Topic , Research Design
7.
J Gen Intern Med ; 36(2): 296-304, 2021 02.
Article in English | MEDLINE | ID: mdl-33111240

ABSTRACT

BACKGROUND: Palliative care interventions in the ED capture high-risk patients at a time of crisis and can dramatically improve patient-centered outcomes. OBJECTIVE: To understand the facilitators that contributed to the success of the Primary Palliative Care for Emergency Medicine (PRIM-ER) quality improvement pilot intervention. DESIGN: Effectiveness was evaluated through semi-structured interviews. Reach outcomes were measured by percent of all full-time emergency providers (physicians, physician assistants, nurses) who completed the intervention education components and baseline survey assessing attitudes and knowledge on end-of-life care. PARTICIPANTS: Emergency medicine providers affiliated with two medical centers (N = 197). Interviews conducted with six key informants at both institutions. APPROACH: Interviews were recorded, transcribed, and analyzed using deductive and inductive approaches. Descriptive statistics include reach outcomes and baseline survey results. KEY RESULTS: Both sites successfully implemented all components of the intervention and achieved a high level (> 75%) of intervention reach. Two themes emerged as facilitators to successful effectiveness facilitators of PRIM-ER: (1) institutional leadership support and (2) leveraging established quality improvement (QI) processes. Institutional support included leveraging leadership with authority to (a) mandate trainings; (b) substitute PRIM-ER education for normally scheduled education; and (c) provide protected time to implement intervention components. Effectiveness was also enhanced by capitalizing on existing QI processes which included (a) leveraging interdisciplinary partnerships and communication plans and (b) monitoring performance improvement data. CONCLUSIONS: Capitalizing on strong institutional leadership support and established QI processes enhanced the reach and effectiveness of the PRIM-ER pilot. These findings will guide the PRIM-ER researchers in scaling up the intervention in the remaining 33 sites, as well as enhance the planning of other complex quality improvement interventions in clinical settings. REGISTRATION DETAILS: ClinicalTrials.gov Identifier: NCT03424109; Grant Number: AT009844-01.


Subject(s)
Emergency Medicine , Hospice Care , Humans , Palliative Care , Pilot Projects , Primary Health Care
8.
Support Care Cancer ; 29(8): 4543-4553, 2021 Aug.
Article in English | MEDLINE | ID: mdl-33483789

ABSTRACT

PURPOSE: Many patients with cancer seek care for pain in the emergency department (ED). Prospective research on cancer pain in this setting has historically been insufficient. We conducted this study to describe the reported pain among cancer patients presenting to the ED, how pain is managed, and how pain may be associated with clinical outcomes. METHODS: We conducted a multicenter cohort study on adult patients with active cancer presenting to 18 EDs in the USA. We reported pain scores, response to medication, and analgesic utilization. We estimated the associations between pain severity, medication utilization, and the following outcomes: 30-day mortality, 30-day hospital readmission, and ED disposition. RESULTS: The study population included 1075 participants. Those who received an opioid in the ED were more likely to be admitted to the hospital and were more likely to be readmitted within 30 days (OR 1.4 (95% CI: 1.11, 1.88) and OR 1.56 (95% CI: 1.17, 2.07)), respectively. Severe pain at ED presentation was associated with increased 30-day mortality (OR 2.30, 95% CI: 1.05, 5.02), though this risk was attenuated when adjusting for clinical factors (most notably functional status). CONCLUSIONS: Patients with severe pain had a higher risk of mortality, which was attenuated when correcting for clinical characteristics. Those patients who required opioid analgesics in the ED were more likely to require admission and were more at risk of 30-day hospital readmission. Future efforts should focus on these at-risk groups, who may benefit from additional services including palliative care, hospice, or home-health services.


Subject(s)
Analgesics/therapeutic use , Cancer Pain/drug therapy , Emergency Service, Hospital/statistics & numerical data , Hospitalization/statistics & numerical data , Pain Management/methods , Adult , Analgesics, Opioid/therapeutic use , Cancer Pain/mortality , Female , Humans , Male , Middle Aged , Odds Ratio , Pain Management/mortality , Pain Measurement , Patient Readmission/statistics & numerical data , Prospective Studies , United States
9.
BMC Med Inform Decis Mak ; 20(1): 13, 2020 Jan 28.
Article in English | MEDLINE | ID: mdl-31992301

ABSTRACT

BACKGROUND: The emergency department is a critical juncture in the trajectory of care of patients with serious, life-limiting illness. Implementation of a clinical decision support (CDS) tool automates identification of older adults who may benefit from palliative care instead of relying upon providers to identify such patients, thus improving quality of care by assisting providers with adhering to guidelines. The Primary Palliative Care for Emergency Medicine (PRIM-ER) study aims to optimize the use of the electronic health record by creating a CDS tool to identify high risk patients most likely to benefit from primary palliative care and provide point-of-care clinical recommendations. METHODS: A clinical decision support tool entitled Emergency Department Supportive Care Clinical Decision Support (Support-ED) was developed as part of an institutionally-sponsored value based medicine initiative at the Ronald O. Perelman Department of Emergency Medicine at NYU Langone Health. A multidisciplinary approach was used to develop Support-ED including: a scoping review of ED palliative care screening tools; launch of a workgroup to identify patient screening criteria and appropriate referral services; initial design and usability testing via the standard System Usability Scale questionnaire, education of the ED workforce on the Support-ED background, purpose and use, and; creation of a dashboard for monitoring and feedback. RESULTS: The scoping review identified the Palliative Care and Rapid Emergency Screening (P-CaRES) survey as a validated instrument in which to adapt and apply for the creation of the CDS tool. The multidisciplinary workshops identified two primary objectives of the CDS: to identify patients with indicators of serious life limiting illness, and to assist with referrals to services such as palliative care or social work. Additionally, the iterative design process yielded three specific patient scenarios that trigger a clinical alert to fire, including: 1) when an advance care planning document was present, 2) when a patient had a previous disposition to hospice, and 3) when historical and/or current clinical data points identify a serious life-limiting illness without an advance care planning document present. Monitoring and feedback indicated a need for several modifications to improve CDS functionality. CONCLUSIONS: CDS can be an effective tool in the implementation of primary palliative care quality improvement best practices. Health systems should thoughtfully consider tailoring their CDSs in order to adapt to their unique workflows and environments. The findings of this research can assist health systems in effectively integrating a primary palliative care CDS system seamlessly into their processes of care. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03424109. Registered 6 February 2018, Grant Number: AT009844-01.


Subject(s)
Decision Support Systems, Clinical/instrumentation , Emergency Medicine/organization & administration , Palliative Care , Referral and Consultation , Software Design , Workflow , Emergency Service, Hospital/organization & administration , Humans , New York , Quality of Health Care
10.
J Emerg Med ; 57(3): 354-361, 2019 Sep.
Article in English | MEDLINE | ID: mdl-31353265

ABSTRACT

BACKGROUND: Patients with active cancer account for a growing percentage of all emergency department (ED) visits and have a unique set of risks related to their disease and its treatments. Effective triage for this population is fundamental to facilitating their emergency care. OBJECTIVES: We evaluated the validity of the Emergency Severity Index (ESI; version 4) triage tool to predict ED-relevant outcomes among adult patients with active cancer. METHODS: We conducted a prespecified analysis of the observational cohort established by the National Cancer Institute-supported Comprehensive Oncologic Emergencies Research Network's multicenter (18 sites) study of ED visits by patients with active cancer (N = 1075). We used a series of χ2 tests for independence to relate ESI scores with 1) disposition, 2) ED resource use, 3) hospital length of stay, and 4) 30-day mortality. RESULTS: Among the 1008 subjects included in this analysis, the ESI distribution skewed heavily toward high acuity (>95% of subjects had an ESI level of 1, 2, or 3). ESI was significantly associated with patient disposition and ED resource use (p values < 0.05). No significant associations were observed between ESI and the non-ED based outcomes of hospital length of stay or 30-day mortality. CONCLUSION: ESI scores among ED patients with active cancer indicate higher acuity than the general ED population and are predictive of disposition and ED resource use. These findings show that the ESI is a valid triage tool for use in this population for outcomes directly relevant to ED care.


Subject(s)
Neoplasms/therapy , Severity of Illness Index , Triage/methods , Adult , Aged , Aged, 80 and over , Emergency Service, Hospital/statistics & numerical data , Female , Humans , Length of Stay , Male , Middle Aged , Neoplasms/diagnosis , Neoplasms/mortality , Prospective Studies , Young Adult
11.
Palliat Med ; 32(2): 417-425, 2018 02.
Article in English | MEDLINE | ID: mdl-28429643

ABSTRACT

BACKGROUND: Emergency department-based palliative care services are increasing, but research to develop these services rarely includes input from emergency clinicians, jeopardizing the effectiveness of subsequent palliative care interventions. AIM: To collaboratively identify with emergency clinicians' improvement priorities for emergency department-based palliative care for older people. DESIGN: This was one component of an experience-based co-design project, conducted using semi-structured interviews and feedback sessions. SETTING/PARTICIPANTS: In-depth interviews with 15 emergency clinicians (nurses and doctors) at a large teaching hospital emergency department in the United Kingdom exploring experiences of palliative care delivery for older people. A thematic analysis identified core challenges that were presented to 64 clinicians over five feedback sessions, validating interview findings, and identifying shared priorities for improving palliative care delivery. RESULTS: Eight challenges emerged: patient age; access to information; communication with patients, family members, and clinicians; understanding of palliative care; role uncertainty; complex systems and processes; time constraints; and limited training and education. Through feedback sessions, clinicians selected four challenges as improvement priorities: time constraints; communication and information; systems and processes; and understanding of palliative care. As resulting improvement plans evolved, "training and education" replaced "time constraints" as a priority. CONCLUSION: Clinician priorities for improving emergency department-based palliative care were identified through collaborative, iterative processes. Though generally aware of older palliative patients' needs, clinicians struggled to provide high-quality care due to a range of complex factors. Further research should identify whether priorities are shared across other emergency departments, and develop, implement, and evaluate strategies developed by clinicians.


Subject(s)
Emergency Service, Hospital , Geriatric Nursing , Medical Staff, Hospital/psychology , Palliative Care/standards , Adult , Female , Humans , Interviews as Topic , Male , Middle Aged , Qualitative Research
12.
Ann Emerg Med ; 68(2): 213-21, 2016 08.
Article in English | MEDLINE | ID: mdl-27033142

ABSTRACT

STUDY OBJECTIVE: Language barriers are known to negatively affect many health outcomes among limited English proficiency patient populations, but little is known about the quality of care such patients receive in the emergency department (ED). This study seeks to determine whether limited English proficiency patients experience different quality of care than English-speaking patients in the ED, using unplanned revisit within 72 hours as a surrogate quality indicator. METHODS: We conducted a retrospective cohort study in an urban adult ED in 2012, with a total of 41,772 patients and 56,821 ED visits. We compared 2,943 limited English proficiency patients with 38,829 English-speaking patients presenting to the ED after excluding patients with psychiatric complaints, altered mental status, and nonverbal states, and those with more than 4 ED visits in 12 months. Two main outcomes-the risk of inpatient admission from the ED and risk of unplanned ED revisit within 72 hours-were measured with odds ratios from generalized estimating equation multivariate models. RESULTS: Limited English proficiency patients were more likely than English speakers to be admitted (32.0% versus 27.2%; odds ratio [OR]=1.20; 95% confidence interval [CI] 1.11 to 1.30). This association became nonsignificant after adjustments (OR=1.04; 95% CI 0.95 to 1.15). Included in the analysis of ED revisit within 72 hours were 32,857 patients with 45,546 ED visits; 4.2% of all patients (n=1,380) had at least 1 unplanned revisit. Limited English proficiency patients were more likely than English speakers to have an unplanned revisit (5.0% versus 4.1%; OR=1.19; 95% CI 1.02 to 1.45). This association persisted (OR=1.24; 95% CI 1.02 to 1.53) after adjustment for potential confounders, including insurance status. CONCLUSION: We found no difference in hospital admission rates between limited English proficiency patients and English-speaking patients. Yet limited English proficiency patients were 24% more likely to have an unplanned ED revisit within 72 hours, with an absolute difference of 0.9%, suggesting challenges in ED quality of care.


Subject(s)
Communication Barriers , Emergency Service, Hospital/statistics & numerical data , Patient Readmission/statistics & numerical data , Adult , Comorbidity , Ethnicity , Female , Hospitals, Urban , Humans , Male , Middle Aged , Odds Ratio , Patient Admission/statistics & numerical data , Quality of Health Care , Retrospective Studies , Risk Factors
13.
J Emerg Med ; 46(2): 264-70, 2014 Feb.
Article in English | MEDLINE | ID: mdl-24286714

ABSTRACT

BACKGROUND: Emergency department (ED) providers commonly care for seriously ill patients who suffer from advanced, chronic, life-limiting illnesses in addition to those that are acutely ill or injured. Both the chronically ill and those who present in extremis may benefit from application of palliative care principles. CASE REPORT: We present a case highlighting the opportunities and need for better integration of emergency medicine and palliative care. DISCUSSION: We offer practical guidelines to the ED faculty/administrators who seek to enhance the quality of patient care in their own unique ED setting by starting an initiative that better integrates palliative principles into daily practice. Specifically, we outline four things to do to jumpstart this collaborative effort. CONCLUSION: The Improving Palliative Care in Emergency Medicine project sponsored by the Center to Advance Palliative Care is a resource that assists ED health care providers with the process and structure needed to integrate palliative care into the ED setting.


Subject(s)
Delivery of Health Care, Integrated/organization & administration , Emergency Service, Hospital/organization & administration , Palliative Care/organization & administration , Humans , Practice Guidelines as Topic
14.
J Palliat Med ; 27(6): 823-826, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38935487

ABSTRACT

When advance care plans are not communicated or goals are in conflict, significant family and clinician distress may result. The distress is especially high when potentially nongoal concordant care is expected by surrogates in the emergency department (ED). To demonstrate the effect of off-hour, phone consultations by palliative care clinicians in reducing the family and clinician distress when nongoal concordant care is expected in the ED. A partnership between palliative care and emergency medicine can decrease the burden of decision making and provide opportunities for modeling a goals-of-care discussion by experts in this important procedure.


Subject(s)
Emergency Service, Hospital , Palliative Care , Humans , Advance Care Planning , Male , Female , Middle Aged , Aged , Decision Making , Adult , Aged, 80 and over
15.
J Palliat Med ; 27(1): 63-74, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37672598

ABSTRACT

Background: The Functional Assessment of Cancer Therapy-General (FACT-G) is a widely used quality-of-life measure. However, no studies have examined the FACT-G among patients with life-limiting illnesses who present to emergency departments (EDs). Objective: The goal of this study was to examine the psychometric properties of the FACT-G among patients with life-limiting illnesses who present to EDs in the United States. Methods: This cross-sectional study pooled data from 12 EDs between April 2018 and January 2020 (n = 453). Patients enrolled in the study were adults with one or more of the four life-limiting illnesses: advanced cancer, Congestive Heart Failure, Chronic Obstructive Pulmonary Disease, or End-Stage Renal Disease. We conducted item, exploratory, and confirmatory analyses (exploratory factor analysis [EFA] and confirmatory factor analysis [CFA]) to determine the psychometric properties of the FACT-G. Results: The FACT-G had good internal consistency (Cronbach's alpha α = 0.88). The simplest EFA model was a six-factor structure. The CFA supported the six-factor structure, evidenced by the adequate fit indices (comparative fit index = 0.93, Tucker-Lewis index = 0.92, root-mean-square error of approximation = 0.05; 90% confidence interval: 0.04 - 0.06). The six-factor structure comprised the physical, emotional, work and daily activities-related functional well-being, and the family and friends-related social well-being domains. Conclusions: The FACT-G is a reliable measure of health-related quality of life among patients with life-limiting illnesses who present to the ED. Clinical Trial Registration: NCT03325985.


Subject(s)
Neoplasms , Quality of Life , Adult , Humans , Surveys and Questionnaires , Psychometrics , Cross-Sectional Studies , Physical Therapy Modalities , Reproducibility of Results , Neoplasms/therapy
16.
J Patient Exp ; 11: 23743735231224562, 2024.
Article in English | MEDLINE | ID: mdl-38188534

ABSTRACT

Study advisory committees (SACs) provide critical value to clinical trials by providing unique perspectives that pull from personal and professional experiences related to the trial's healthcare topic. The Emergency Medicine Palliative Care Access (EMPallA) study had the privilege of convening a 16-person SAC from the project's inception to completion. The study team wanted to understand the impact this project had on the SAC members. In this narrative, we use reflective dialogue to share SAC members' lived experiences and the impact the EMPallA study has had on members both personally and professionally. We detail the (1) benefits SAC members, specifically patients, and caregivers, have had through working on this project. (2) The importance of recruiting diverse SAC members with different lived experiences and leveraging their feedback in clinical research. (3) Value of community capacity building to ensure the common vision of the clinical trial is promoted.

17.
Res Involv Engagem ; 10(1): 10, 2024 Jan 23.
Article in English | MEDLINE | ID: mdl-38263088

ABSTRACT

BACKGROUND: Involving patient and community stakeholders in clinical trials adds value by ensuring research prioritizes patient goals both in conduct of the study and application of the research. The use of stakeholder committees and their impact on the conduct of a multicenter clinical trial have been underreported clinically and academically. The aim of this study is to describe how Study Advisory Committee (SAC) recommendations were implemented throughout the Emergency Medicine Palliative Care Access (EMPallA) trial. EMPallA is a multi-center, pragmatic two-arm randomized controlled trial (RCT) comparing the effectiveness of nurse-led telephonic case management and specialty, outpatient palliative care of older adults with advanced illness. METHODS: A SAC consisting of 18 individuals, including patients with palliative care experience, members of healthcare organizations, and payers was convened for the EMPallA trial. The SAC engaged in community-based participatory research and assisted in all aspects from study design to dissemination. The SAC met with the research team quarterly and annually from project inception to dissemination. Using meeting notes and recordings we completed a qualitative thematic analysis using an iterative process to develop themes and subthemes to summarize SAC recommendations throughout the project's duration. RESULTS: The SAC convened 16 times between 2017 and 2020. Over the course of the project, the SAC provided 41 unique recommendations. Twenty-six of the 41 (63%) recommendations were adapted into formal Institutional Review Board (IRB) study modifications. Recommendations were coded into four major themes: Scientific, Pragmatic, Resource and Dissemination. A majority of the recommendations were related to either the Scientific (46%) or Pragmatic (29%) themes. Recommendations were not mutually exclusive across three study phases: Preparatory, execution and translational. A vast majority (94%) of the recommendations made were related to the execution phase. Major IRB study modifications were made based on their recommendations including data collection of novel dependent variables and expanding recruitment to Spanish-speaking patients. CONCLUSIONS: Our study provides an example of successful integration of a SAC in the conduct of a pragmatic, multi-center RCT. Future trials should engage with SACs in all study phases to ensure trials are relevant, inclusive, patient-focused, and attentive to gaps between health care and patient and family needs. TRIAL REGISTRATION: Clinicaltrials.gov Identifier: NCT03325985, 10/30/2017.


Clinical research should involve patient and community stakeholder perspectives to make sure the study addresses questions important to the studied population. One way to do this is by creating a group of stakeholders who can advise on the conduct of a study. We assembled a Study Advisory Committee (SAC) for the Emergency Medicine Palliative Care Access (EMPallA) trial. The purpose of this clinical trial is to compare the effectiveness of nurse-led telephonic case management and specialty, outpatient palliative care of older adults with advanced illness. This paper describes how the SACs involvement translated into direct impacts on the EMPallA trial. The trial research team held regular meetings with the SAC throughout the trial process. Their involvement led to many significant changes in the trial, such as  expanding recruitment inclusion criteria (Spanish-speaking patients), and including survey instruments to measure lonelines and caregiver burden. The SAC also devised strategies to overcome patient and caregiver recruitment and retention challenges, including the creation of patient-friendly materials and training for research coordinators. This study provides a successful example of how actively engaging patient and community stakeholders, through committee engagement, can promote patient priorities in all phases of a trial while facilitating patient recruitment and retention.

18.
AIDS Behav ; 17(2): 517-22, 2013 Feb.
Article in English | MEDLINE | ID: mdl-22101890

ABSTRACT

A cross-sectional structured online survey was self-administered to a convenience sample of current female adult film performers via the Internet; bivariate analyses compared HIV and other STI risk behaviors, knowledge, and testing in female adult performers to California Women's Health Survey respondents. 134 female adult film performers (mean age 27.8 years) were compared to the 1,773 female respondents (mean age 31.3 years) to the 2007 CWHS. Female performers initiated sex on average 3 years younger and had 6.8 more personal sexual partners in the prior year than other California women. The majority of performers reported HIV and Chlamydia testing (94 and 82%, respectively) in the prior 12 months. They more likely to use condoms consistently in their personal life than other California women (21 vs 17%), though this difference disappeared after controlling for other variables. Adult performers are routinely tested for HIV and Chlamydia, yet they have multiple sexual partners and use condoms inconsistently.


Subject(s)
Chlamydia Infections/epidemiology , Condylomata Acuminata/epidemiology , Erotica , Gonorrhea/epidemiology , HIV Infections/epidemiology , Occupational Exposure/statistics & numerical data , Workplace/standards , Adolescent , Adult , California/epidemiology , Chlamydia Infections/prevention & control , Condoms/statistics & numerical data , Condylomata Acuminata/prevention & control , Cross-Sectional Studies , Female , Gonorrhea/prevention & control , HIV Infections/prevention & control , Health Knowledge, Attitudes, Practice , Humans , Incidence , Internet , Middle Aged , Motion Pictures , Occupational Exposure/prevention & control , Risk Factors , Risk-Taking , Sexual Behavior , Surveys and Questionnaires , Women's Health
19.
Ann Emerg Med ; 61(6): 654-60, 2013 Jun.
Article in English | MEDLINE | ID: mdl-22771203

ABSTRACT

STUDY OBJECTIVE: We identify hospital-level factors from the administrative perspective that affect the availability and delivery of palliative care services in the emergency department (ED). METHODS: Semistructured interviews were conducted with 14 key informants, including hospital executives, ED directors, and palliative care directors at a tertiary care center, a public hospital, and a community hospital. The discussions were digitally recorded and transcribed to conduct a thematic analysis using grounded theory. A coding scheme was iteratively developed to subsequently identify themes and subthemes that emerged from the interviews. RESULTS: Barriers to integrating palliative care and emergency medicine from the administrative perspective include the ED culture of aggressive care, limited knowledge, palliative care staffing, and medicolegal concerns. Incentives to the delivery of palliative care in the ED from these key informants' perspective include improved patient and family satisfaction, opportunities to provide meaningful care to patients, decreased costs of care for admitted patients, and avoidance of unnecessary admissions to more intensive hospital settings, such as the ICU, for patients who have little likelihood of benefit. CONCLUSION: Though hospital administration at 3 urban hospitals on the East coast has great interest in integrating palliative care and emergency medicine to improve quality of care, patient and family satisfaction, and decrease length of stay for admitted patients, palliative care staffing, medicolegal concerns, and logistic issues need to be addressed.


Subject(s)
Attitude of Health Personnel , Emergency Service, Hospital , Hospital Administrators , Palliative Care , Emergency Service, Hospital/legislation & jurisprudence , Emergency Service, Hospital/organization & administration , Health Services Accessibility/organization & administration , Hospitals, Community/methods , Hospitals, Community/organization & administration , Hospitals, Public/methods , Hospitals, Public/organization & administration , Humans , Interviews as Topic , Palliative Care/legislation & jurisprudence , Palliative Care/methods , Palliative Care/organization & administration , Tertiary Care Centers/organization & administration , United States
20.
Prehosp Emerg Care ; 17(4): 511-20, 2013.
Article in English | MEDLINE | ID: mdl-23968313

ABSTRACT

Emergency medical service (EMS) is frequently called to care for a seriously ill patient with a life-threatening or life-limiting illness. The seriously ill include both the acutely injured patients (for example in mass casualty events) and those who suffer from advanced stages of a chronic disease (for example severe malignant pain). EMS therefore plays an important role in delivering realistic, appropriate, and timely care that is consistent with the patient's wishes and in treating distressing symptoms in those who are seriously ill. The purpose of this article is to; 1) review four case scenarios that relate to palliative care and may be commonly encountered in the out-of-hospital setting and 2) provide a road map by suggesting four things to do to start an EMS-palliative care initiative in order to optimize out-of-hospital care of the seriously ill and increase preparedness of EMS providers in these difficult situations.


Subject(s)
Delivery of Health Care, Integrated/organization & administration , Emergency Medical Services/organization & administration , Palliative Care/organization & administration , Humans , Mass Casualty Incidents , Professional Role
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