DOI: 10.3886/icpsr39115.v1
title: Emergency Medicine Palliative Care Access (EMPallA), United States, 2018-2022
title: Version 1

description: According to the World Health Organization, palliative care is "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psycho-social and spiritual." The goal of the study was to generate comparative effectiveness research evidence to support the delivery of coordinated, community-based palliative care that effectively implements care plans consistent with the goals and preferences of older adults with advanced illness and their caregivers.
This study included a pragmatic, two-arm, multi-site randomized controlled trial of older adults (50+ years) with either poor prognosis cancer or end-stage organ failure who were recruited during an emergency department (ED) visit, along with their informal caregivers, to compare nurse-led telephonic case management to facilitated, outpatient specialty palliative care on: 1) quality of life in patients, 2) loneliness, 3) healthcare use in the 12 months following enrollment, 4) symptom burden, 5) caregiver strain, 6) caregiver quality of life, and 7) bereavement.
description: The purpose of this study was to understand which model of palliative care in the community improves patient- and family-centered outcomes.
description: This is a pragmatic, two-arm, multi-site randomized controlled trial of older adults (50+ years) with either poor prognosis cancer or end-stage organ failure who were recruited during an emergency department (ED) visit. Eighteen EDs began participant recruitment in three groups: the first in mid-2018, the second in late 2019-mid 2020, and the third in late 2021.
The primary comparison was the change in quality of life (QOL) from baseline to six months. The unit of analysis was the patient, and an unblinded outcome assessment occurred for all patient and caregiver participants at 3 months, 6 months, and 12 months. The patient-specific healthcare utilization outcomes were derived from hospital electronic health records (EHR) and self-report data. ED revisits and inpatient days were derived from hospital EHR data, while hospice use was derived from a combination of EHR data and self-report.
description: The variables in this study included patient measures regarding quality of life, loneliness, healthcare use in the 12 months following enrollment and symptom burden. This study also included caregiver measures of caregiver strain, quality of life, and bereavement. Demographic variables were included for both patients and caregivers.
description: Response Rates: 38 percent of the sample was missing at the six-month follow-up period; 21 percent due to death (either the caregiver or patient) and 17 percent due to non-response or drop-out.
description: Presence of Common Scales: <b>DS1 (Caregiver Data)</b>
Several Likert-type scales were used:
Short Form Zarit Burden Interview (ZBI-12)
PROMIS (Patient-Reported Outcomes Measurement Information System) Global Health Short Form (PROMIS-10)
Texas Revised Inventory of Grief Part II - Present Emotional Feelings (TRIG-Part II)
<b>DS2 (Patient Data)</b>
Several Likert-type scales were used:
Functional Assessment of Cancer Therapy - Version 4 (FACT-G, Version 4)
Edmonton Symptom Assessment System Revised (ESAS-r)
Three-Item Loneliness Scale
description: <b>Participation inclusion criteria (participants must have fulfilled all criteria listed below):</b>

Patient is 50 years or older, English or Spanish speaking.
Patient has one or more qualifying serious, life-limiting conditions.
Patient is scheduled for emergency department (ED) discharge, observation status, or inpatient stay for two midnights or less.
Patient has health insurance.
Patient resides within the geographical area, and has a working telephone
Patients' primary care provider (PCP) and/or oncologist is willing to have patient participate in study
Caregivers are eligible if they speak English or Spanish and qualify as the primary caregiver
<b>Participation exclusion criteria (participants were excluded if they fulfilled any of the criteria listed below):</b>

Patients with dementia listed in the electronic health records (EHR) problem list
Patients who received hospice services in the last six months
Patients who received two or more palliative care consults or visits in the last six months
Patients who reside in or are being discharged to a skilled nursing or assisted living facility or chronic care hospital
description: Datasets: 
DS0: Study-Level Files
DS1: Caregiver Data
DS2: Patient Data
description: <b>Caregivers:</b> Persons aged 18 and over with telephones, English or Spanish speaking, who qualify as the primary caregiver of the enrolled patient participant.
<b>Patients:</b> Persons aged 50 and over with telephones and health insurance, English or Spanish speaking, residing within the nine study states, with one or more qualifying serious, life-limiting conditions)..
description: face-to-face interview; mail questionnaire; mixed mode; on-site questionnaire; telephone interview; web-based survey