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Development of an Outpatient Palliative Care Protocol to Monitor Fidelity in the Emergency Medicine Palliative Care Access Trial.

ABSTRACT: Introduction: Palliative care is recommended for patients with life-limiting illnesses; however, there are few standardized protocols for outpatient palliative care visits. To address the paucity of data, this article aims to: (1) describe the elements of outpatient palliative care that are generalizable across clinical sites; (2) achieve consensus about standardized instruments used to assess domains within outpatient palliative care; and (3) develop a protocol and intervention checklist for palliative care clinicians to document outpatient visit elements that might not normally be recorded in the electronic heath record. Methods: As part of a randomized control trial of nurse-led telephonic case management versus specialty, outpatient palliative care in older adults with serious life-limiting illnesses in the Emergency Department, we assessed the structural characteristics of outpatient care clinics across nine participating health care systems. In addition, direct observation of outpatient palliative care visits, consultation from content experts, and survey data were used to develop an outpatient palliative care protocol and intervention checklist. Implementation: The protocol and checklist are being used to document the contents of each outpatient palliative care visit conducted as a part of the Emergency Medicine Palliative Care Access (EMPallA) trial. Variation across palliative care team staffing, clinic session capacity, and physical clinic model presents a challenge to standardizing the delivery of outpatient palliative care.

SUBMITTER: Grudzen CR

PROVIDER: S-EPMC7366256 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Development of an Outpatient Palliative Care Protocol to Monitor Fidelity in the Emergency Medicine Palliative Care Access Trial.

Grudzen Corita R CR Schmucker Abigail M AM Shim Deborah J DJ Ibikunle Aminat A Cho Jeanne J Chung Frank R FR Cohen Susan E SE

Journal of palliative medicine 20190901 S1

<b><i>Introduction:</i></b> Palliative care is recommended for patients with life-limiting illnesses; however, there are few standardized protocols for outpatient palliative care visits. To address the paucity of data, this article aims to: (1) describe the elements of outpatient palliative care that are generalizable across clinical sites; (2) achieve consensus about standardized instruments used to assess domains within outpatient palliative care; and (3) develop a protocol and intervention ch ...[more]

PMID: 31486726

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Project description:INTRODUCTION:Emergency department (ED)-initiated palliative care has been shown to improve patient-centred outcomes in older adults with serious, life-limiting illnesses. However, the optimal modality for providing such interventions is unknown. This study aims to compare nurse-led telephonic case management to specialty outpatient palliative care for older adults with serious, life-limiting illness on: (1) quality of life in patients; (2) healthcare utilisation; (3) loneliness and symptom burden and (4) caregiver strain, caregiver quality of life and bereavement. METHODS AND ANALYSIS:This is a protocol for a pragmatic, multicentre, parallel, two-arm randomised controlled trial in ED patients comparing two established models of palliative care: nurse-led telephonic case management and specialty, outpatient palliative care. We will enrol 1350 patients aged 50+ years and 675 of their caregivers across nine EDs. Eligible patients: (1) have advanced cancer (metastatic solid tumour) or end-stage organ failure (New York Heart Association class III or IV heart failure, end-stage renal disease with glomerular filtration rate <15 mL/min/m2, or global initiative for chronic obstructive lung disease stage III, IV or oxygen-dependent chronic obstructive pulmonary disease); (2) speak English; (3) are scheduled for ED discharge or observation status; (4) reside locally; (5) have a working telephone and (6) are insured. Patients will be excluded if they: (1) have dementia; (2) have received hospice care or two or more palliative care visits in the last 6 months or (3) reside in a long-term care facility. We will use patient-level block randomisation, stratified by ED site and disease. Effectiveness will be compared by measuring the impact of each intervention on the specified outcomes. The primary outcome will measure change in patient quality of life. ETHICS AND DISSEMINATION:Institutional Review Board approval was obtained at all study sites. Trial results will be submitted for publication in a peer-reviewed journal. TRIAL REGISTRATION NUMBER:NCT03325985; Pre-results.

Project description:BackgroundThe Emergency Medicine Palliative Care Access (EMPallA) trial is a large, multicenter, parallel, two-arm randomized controlled trial in emergency department (ED) patients comparing two models of palliative care: nurse-led telephonic case management and specialty, outpatient palliative care. This report aims to: 1) report baseline demographic and quality of life (QOL) data for the EMPallA cohort, 2) identify the association between illness type and baseline QOL while controlling for other factors, and 3) explore baseline relationships between illness type, symptom burden, and loneliness.MethodsPatients aged 50+ years with advanced cancer (metastatic solid tumor) or end-stage organ failure (New York Heart Association Class III or IV heart failure, end stage renal disease with glomerular filtration rate < 15 mL/min/m2, or Global Initiative for Chronic Obstructive Lung Disease Stage III, IV, or oxygen-dependent chronic obstructive pulmonary disease defined as FEV1 < 50%) are eligible for enrollment. Baseline data includes self-reported demographics, QOL measured by the Functional Assessment of Cancer Therapy-General (FACT-G), loneliness measured by the Three-Item UCLA Loneliness Scale, and symptom burden measured by the Edmonton Revised Symptom Assessment Scale. Descriptive statistics were used to analyze demographic variables, a linear regression model measured the importance of illness type in predicting QOL, and chi-square tests of independence were used to quantify relationships between illness type, symptom burden, and loneliness.ResultsBetween April 2018 and April 3, 2020, 500 patients were enrolled. On average, end-stage organ failure patients had lower QOL as measured by the FACT-G scale than cancer patients with an estimated difference of 9.6 points (95% CI: 5.9, 13.3), and patients with multiple conditions had a further reduction of 7.4 points (95% CI: 2.4, 12.5), when adjusting for age, education level, race, sex, immigrant status, presence of a caregiver, and hospital setting. Symptom burden and loneliness were greater in end-stage organ failure than in cancer.ConclusionsThe EMPallA trial is enrolling a diverse sample of ED patients. Differences by illness type in QOL, symptom burden, and loneliness demonstrate how distinct disease trajectories manifest in the ED.Trial registrationClinicaltrials.gov identifier: NCT03325985 . Registered October 30, 2017.

Project description:IntroductionEmergency departments (ED) care for society's most vulnerable older adults who present with exacerbations of chronic disease at the end of life, yet the clinical paradigm focuses on treatment of acute pathologies. Palliative care interventions in the ED capture high-risk patients at a time of crisis and can dramatically improve patient-centred outcomes. This study aims to implement and evaluate Primary Palliative Care for Emergency Medicine (PRIM-ER) on ED disposition, healthcare utilisation and survival in older adults with serious illness.Methods and analysisThis is the protocol for a pragmatic, cluster-randomised stepped wedge trial to test the effectiveness of PRIM-ER in 35 EDs across the USA. The intervention includes four core components: (1) evidence-based, multidisciplinary primary palliative care education; (2) simulation-based workshops; (3) clinical decision support; and (4) audit and feedback. The study is divided into two phases: a pilot phase, to ensure feasibility in two sites, and an implementation and evaluation phase, where we implement the intervention and test the effectiveness in 33 EDs over 2 years. Using Centers for Medicare and Medicaid Services (CMS) data, we will assess the primary outcomes in approximately 300 000 patients: ED disposition to an acute care setting, healthcare utilisation in the 6 months following the ED visit and survival following the index ED visit. Analysis will also determine the site, provider and patient-level characteristics that are associated with variation in impact of PRIM-ER.Ethics and disseminationInstitutional Review Board approval was obtained at New York University School of Medicine to evaluate the CMS data. Oversight will also be provided by the National Institutes of Health, an Independent Monitoring Committee and a Clinical Informatics Advisory Board. Trial results will be submitted for publication in a peer-reviewed journal.Trial registration numberNCT03424109; Pre-results.

Project description:IntroductionOver the last decades, patient-reported outcome (PRO) measures have been developed to better understand the patient's perspective and enable patient-centred care. In palliative care, the Integrated Palliative care Outcome Scale (IPOS) is recommended as a PRO tool. Its implementation in specialised palliative home care (SPHC) would benefit from an electronic version validated for the setting.Following the Medical Research Council (MRC) guidance, the study Palli-MONITOR is developing (phase 1) and testing the feasibility (phase 2) of implementing the electronic version of IPOS (eIPOS) in the SPHC setting to inform a cluster-randomised phase 3 trial.Methods and analysisPalli-MONITOR is a multicentre, sequential mixed-methods, two-phase development and feasibility study. The study consists of four substudies. In phase 1 (MRC development phase), qualitative patient interviews and focus groups with SPHC professionals are used to identify barriers and facilitators of eIPOS (substudy I). Substudy II tests the equivalence of eIPOS and IPOS in a crossover randomised controlled trial. Phase 2 (MRC feasibility/piloting phase) includes a quasi-experimental study with two control groups (substudy III), and qualitative interviews as well as focus groups to explore the feasibility and acceptability of the developed intervention (substudy IV).Qualitative data will be analysed with thematic analysis following the framework approach. Quantitative analysis uses a two-way intraclass correlation coefficients model for the equivalence testing. Quantitative analysis of the quasi-experimental study will focus on the primary outcomes, recruitment rates and completeness of eIPOS. Secondary outcomes will include intraindividual change in palliative symptoms and concerns, quality of life and symptom burden.Ethics and disseminationApproval of the ethics committee of the Ludwig Maximilian University Munich was received for all study parts. Results and experiences will be presented at congresses and in written form. Additionally, participating SPHC teams will receive summarised results.Trial registration numberNCT03879668.

Project description:BackgroundInvolving 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.MethodsA 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.ResultsThe 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.ConclusionsOur 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 registrationClinicaltrials.gov Identifier: NCT03325985, 10/30/2017.

Project description:PurposeTo evaluate the impact of either Medicaid or private insurance on securing an appointment in an outpatient orthopaedic clinic and to determine waiting periods until an appointment as well as the relationship between population metrics and access to care.MethodsA total of 88 clinics were called. There were 2 fictitious patients, one with an anterior cruciate ligament (ACL) injury and the other with a medial meniscus injury, with each calling as having Medicaid or private insurance. Clinic responses were recorded for whether an appointment could be made, when it was scheduled, and with what provider.ResultsA total of 32 of 88 (36.4%) of the clinics scheduled an appointment for the Medicaid patient reporting an ACL injury versus 71 of 88 (80.6%) of the clinics that scheduled an appointment for the same patient with private insurance. A total of 34 of 88 (38.6%) of the clinics scheduled an appointment for the Medicaid patient reporting a medial meniscus injury versus 71 of 88 (80.6%) of the clinics that scheduled an appointment for the same patient with private insurance. Mean waiting period for ACL patients with Medicaid was 8.6 days and 4.5 days for patients with private insurance, whereas medial meniscus patients with Medicaid was 7.7 days and 5.4 days for patients with private insurance. In total, 60 of the 66 (90.9%) patients with Medicaid who received an appointment were scheduled to see the orthopaedic surgeon (30 in both ACL and medial meniscus groups). In total, 126 (71.6%) patients with Medicaid and 34 (19.3%) patients with private insurance of the 176 encounters faced barriers to scheduling an appointment. Rural communities were associated with appointment acceptance for patients with Medicaid (P < .05), and patients with private insurance had successful appointment scheduling in all community types (P < .05).ConclusionsThis study suggests that patients with Medicaid are less likely to receive orthopaedic care for multiple sports medicine injuries, are more likely to encounter barriers, and endure longer waiting periods. There are different patterns of insurance acceptance according to population metrics.Clinical relevanceServes as a baseline evaluation of the difference in access to health care that may be impacted by increases in Medicaid coverage and/or changes in government policies.

Project description:BackgroundEmergency medicine (EM) physicians frequently care for seriously ill patients at the end of life. Palliative care initiated in the emergency department (ED) can improve symptom management and quality of life, align treatments with patient preferences, and reduce length of hospitalization. We evaluated an educational intervention with digital tools for palliative care discussions in an urban EM residency using the reach, effectiveness, adoption, implementation, and maintenance (RE-AIM) framework.MethodsOur intervention, conducted from July 2020 to August 2021, included education on palliative care techniques, digital tools, and incentives for participation. We tracked goals of care conversations and palliative care consults using electronic medical record data, conducted pre- and posttraining surveys, and used semistructured interviews to assess resident perspectives on palliative care conversations in the ED. Outcomes included number of goals of care conversations recorded by EM residents, consults to palliative care from the ED, and resident perspectives on palliative care in EM.ResultsThe results were as follows: reach-45 residents participated in the intervention; effectiveness-89 goals of care conversations were documented by 23 ED residents, and palliative care consults increased from approximately four to 10 monthly; adoption-over half the residents who participated in the intervention documented goals of care discussions using an electronic dotphrase; implementation-by the completion of the intervention, residents reported increased comfort with goals of care conversations, saw palliative care as part of their responsibility as EM physicians, and effectively documented goals of care discussions; and maintenance-at 2-month follow up, palliative care consults from the ED remained at approximately 10 monthly, and digital tools to prompt and track palliative care discussions remained in use.ConclusionsAn integrated palliative care training for EM residents with technological assists was successful in facilitating goals of care discussions and increasing palliative care consults from the ED.

Dataset Information

Development of an Outpatient Palliative Care Protocol to Monitor Fidelity in the Emergency Medicine Palliative Care Access Trial.

Publications

Development of an Outpatient Palliative Care Protocol to Monitor Fidelity in the Emergency Medicine Palliative Care Access Trial.

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