Community Tele-pal: A community-developed, culturally based palliative care tele-consult randomized controlled trial for African American and White Rural southern elders with a life-limiting illness

Kristen Allen Watts, Shena Gazaway, Emily Malone, Ronit Elk, Rodney Tucker, Susan McCammon, Michele Goldhagen, Jacob Graham, Veronica Tassin, Joshua Hauser, Sidney Rhoades, Marjorie Kagawa-Singer, Eric Wallace, James McElligott, Richard Kennedy, Marie Bakitas, Kristen Allen Watts, Shena Gazaway, Emily Malone, Ronit Elk, Rodney Tucker, Susan McCammon, Michele Goldhagen, Jacob Graham, Veronica Tassin, Joshua Hauser, Sidney Rhoades, Marjorie Kagawa-Singer, Eric Wallace, James McElligott, Richard Kennedy, Marie Bakitas

Abstract

Background: Patients living in rural areas experience a variety of unmet needs that result in healthcare disparities. The triple threat of rural geography, racial inequities, and older age hinders access to high-quality palliative care (PC) for a significant proportion of Americans. Rural patients with life-limiting illness are at risk of not receiving appropriate palliative care due to a limited specialty workforce, long distances to treatment centers, and limited PC clinical expertise. Although culture strongly influences people's response to diagnosis, illness, and treatment preferences, culturally based care models are not currently available for most seriously ill rural patients and their family caregivers. The purpose of this randomized clinical trial (RCT) is to compare a culturally based tele-consult program (that was developed by and for the rural southern African American (AA) and White (W) population) to usual hospital care to determine the impact on symptom burden (primary outcome) and patient and care partner quality of life (QOL), care partner burden, and resource use post-discharge (secondary outcomes) in hospitalized AA and White older adults with a life-limiting illness.

Methods: Community Tele-pal is a three-site RCT that will test the efficacy of a community-developed, culturally based PC tele-consult program for hospitalized rural AA and W older adults with life-limiting illnesses (n = 352) and a care partner. Half of the participants (n = 176) and a care partner (n = 176) will be randomized to receive the culturally based palliative care consult. The other half of the patient participants (n = 176) and care partners (n = 176) will receive usual hospital care appropriate to their illness.

Discussion: This is the first community-developed, culturally based PC tele-consult program for rural southern AA and W populations. If effective, the tele-consult palliative program and methods will serve as a model for future culturally based PC programs that can reduce patients' symptoms and care partner burden.

Trial registration: ClinicalTrials.gov NCT03767517 . Registered on 27 December 2018.

Keywords: African Americans; Community-based participatory research; Culturally based; Palliative care; Rural hospitals; Tele-consultation; Tele-health; Whites.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Culturally based tele-consult study model, aims, and outcomes
Fig. 2
Fig. 2
Study design
Fig. 3
Fig. 3
Study coordinator flow chart
Fig. 4
Fig. 4
Evaluation of 2013 SPIRIT-recommended content in the community-developed, culturally based palliative care tele-consult program RCT. Notes: EAS = Edmonton Symptom Assessment Scale; MBCB = Montgomery Borgatta Caregiver Burden Scale; CBI = Core Bereavement Items
Fig. 5
Fig. 5
Culturally based tele-consult intervention fidelity monitoring

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Source: PubMed

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