Dissemination and Implementation of a Community Health Worker Intervention for Disparities in Palliative Care (DeCIDE PC): a study protocol for a hybrid type 1 randomized controlled trial

Amn Siddiqi; Olivia Monton; Alison Woods; Taleaa Masroor; Shannon Fuller; Jill Owczarzak; Gayane Yenokyan; Lisa A Cooper; Karen M Freund; Thomas J Smith; Jean S Kutner; Kathryn L Colborn; Robert Joyner; Ronit Elk; Fabian M Johnston

doi:10.1186/s12904-023-01250-0

Dissemination and Implementation of a Community Health Worker Intervention for Disparities in Palliative Care (DeCIDE PC): a study protocol for a hybrid type 1 randomized controlled trial

BMC Palliat Care. 2023 Sep 18;22(1):139. doi: 10.1186/s12904-023-01250-0.

Authors

Amn Siddiqi¹, Olivia Monton^{1

2}, Alison Woods¹, Taleaa Masroor¹, Shannon Fuller³, Jill Owczarzak³, Gayane Yenokyan⁴, Lisa A Cooper^{3

5

6}, Karen M Freund⁷, Thomas J Smith⁸, Jean S Kutner⁹, Kathryn L Colborn¹⁰, Robert Joyner¹¹, Ronit Elk¹², Fabian M Johnston¹³

Affiliations

¹ Department of Surgery, Johns Hopkins University School of Medicine, 600 N Wolfe Street, Baltimore, MD, 21287, USA.
² Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, 615 N Wolfe Street, Baltimore, MD, 21205, USA.
³ Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, 624 N Broadway, Baltimore, MD, 21205, USA.
⁴ Department of Biostatistics, Johns Hopkins Bloomberg School of Public Health, 615 N Wolfe Street, Baltimore, MD, 21205, USA.
⁵ Johns Hopkins University School of Nursing, 525 N Wolfe Street, Baltimore, MD, 21205, USA.
⁶ Department of Medicine, Johns Hopkins University School of Medicine, 2024 East Monument Street, Suite 2-515, Baltimore, MD, 21287, USA.
⁷ Department of Medicine, Tufts University School of Medicine, 800 Washington Street, Boston, MA, 02111, USA.
⁸ Department of Medicine, Johns Hopkins University School of Medicine, 600 N Wolfe Street, Baltimore, MD, 21287, USA.
⁹ Department of Medicine, University of Colorado School of Medicine, 12401 E 17th Ave, Aurora, CO, 80045, USA.
¹⁰ Department of Medicine, School of Medicine, University of Colorado Anschutz Medical Campus, 13001 E 17th Place, Aurora, CO, 80045, USA.
¹¹ Richard A. Henson Research Institute, TidalHealth Peninsula Regional, 100 East Carroll Street, Salisbury, MD, 21801, USA.
¹² Department of Medicine, University of Alabama at Birmingham, 933 19th Street S, Birmingham, AL, 35205, USA.
¹³ Division of Surgical Oncology, Department of Surgery, Johns Hopkins University, 600 N Wolfe Street, Blalock 606, Baltimore, MD, 21287, USA. [email protected].

Abstract

Background: There are persistent racial and ethnic health disparities in end-of-life health outcomes in the United States. African American patients are less likely than White patients to access palliative care, enroll in hospice care, have documented goals of care discussions with their healthcare providers, receive adequate symptom control, or die at home. We developed Community Health Worker Intervention for Disparities in Palliative Care (DeCIDE PC) to address these disparities. DeCIDE PC is an integrated community health worker (CHW) palliative care intervention that uses community health workers (CHWs) as care team members to enhance the receipt of palliative care for African Americans with advanced cancer. The overall objectives of this study are to (1) assess the effectiveness of the DeCIDE PC intervention in improving palliative care outcomes amongst African American patients with advanced solid organ malignancy and their informal caregivers, and (2) develop generalizable knowledge on how contextual factors influence implementation to facilitate dissemination, uptake, and sustainability of the intervention.

Methods: We will conduct a multicenter, randomized, assessor-blind, parallel-group, pragmatic, hybrid type 1 effectiveness-implementation trial at three cancer centers across the United States. The DeCIDE PC intervention will be delivered over 6 months with CHW support tailored to the individual needs of the patient and caregiver. The primary outcome will be advance care planning. The treatment effect will be modeled using logistic regression. The secondary outcomes are quality of life, quality of communication, hospice care utilization, and patient symptoms.

Discussion: We expect the DeCIDE PC intervention to improve integration of palliative care, reduce multilevel barriers to care, enhance clinic and patient linkage to resources, and ultimately improve palliative care outcomes for African American patients with advanced cancer. If found to be effective, the DeCIDE PC intervention may be a transformative model with the potential to guide large-scale adoption of promising strategies to improve palliative care use and decrease disparities in end-of-life care for African American patients with advanced cancer in the United States.

Trial registration: Registered on ClinicalTrials.gov (NCT05407844). First posted on June 7, 2022.

Keywords: Advanced cancer; CHW; Cancer; Community; Community health worker; Health disparities; Palliative care; Racial disparities.

Publication types

Clinical Trial Protocol

MeSH terms

Community Health Workers
Death
Hospice and Palliative Care Nursing*
Humans
Multicenter Studies as Topic
Palliative Care
Quality of Life
Randomized Controlled Trials as Topic
Terminal Care*

Associated data

ClinicalTrials.gov/NCT05407844

Abstract

Publication types

MeSH terms

Associated data

Grants and funding