Emergency Medicine Palliative Care Access (EMPallA), United States, 2018-2022 (ICPSR 39115)

Version Date: Oct 28, 2025

Cite this study |

Principal Investigator(s):
Corita R. Grudzen, Memorial Sloan Kettering Cancer Center. Division of Supportive and Acute Care Services; Keith S. Goldfeld, New York University. Grossman School of Medicine. Department of Population Health

https://doi.org/10.3886/ICPSR39115.v1

Version V1

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Summary

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.

Citation

Grudzen, Corita R., and Goldfeld, Keith S. Emergency Medicine Palliative Care Access (EMPallA), United States, 2018-2022. Inter-university Consortium for Political and Social Research [distributor], 2025-10-28. https://doi.org/10.3886/ICPSR39115.v1

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Funding

Patient-Centered Outcomes Research Institute (PCORI) (PLC-1609-36306)

Subject Terms

Geographic Coverage

Restrictions

Access to these data is restricted. Users interested in obtaining these data must complete a Restricted Data Use Agreement, specify the reason for the request, and obtain IRB approval or notice of exemption for their research.

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2018-04-16 -- 2022-08-14

Date of Collection

2018-04-16 -- 2022-08-14
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Study Purpose

The purpose of this study was to understand which model of palliative care in the community improves patient- and family-centered outcomes.

Study Design

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.

Sample

Participation inclusion criteria (participants must have fulfilled all criteria listed below):

  • 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

    • Participation exclusion criteria (participants were excluded if they fulfilled any of the criteria listed below):

  • 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

    • Time Method

    Longitudinal

    Universe

    Caregivers: Persons aged 18 and over with telephones, English or Spanish speaking, who qualify as the primary caregiver of the enrolled patient participant.

    Patients: 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).

    Unit(s) of Observation

    Individual

    Data Type(s)

    Mode of Data Collection

    Description of Variables

    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.

    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.

    Presence of Common Scales

    DS1 (Caregiver Data)

    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)

    • DS2 (Patient Data)

    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

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    Original Release Date

    2025-10-28

    Version History

    2025-10-28 ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection:

    • Checked for undocumented or out-of-range codes.

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    Notes

    • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

    • ICPSR usually offers files in multiple formats for researchers to be able to access data and documentation in formats that work well within their needs. If you have questions about the accessibility of materials distributed by ICPSR or require further assistance, please visit ICPSR’s Accessibility Center.

    • One or more files in this data collection have special restrictions. Restricted data files are not available for direct download from the website; click on the Restricted Data button to learn more.