Brief Summary

Despite the documented benefits of hospice, less than 2 million people utilize hospice services annually. Underuse disparities are extreme across race and ethnicity as White Americans comprise 85% of all hospice enrollees. AAs account for only 8% of hospice enrollees but are more likely to die from the top three hospice diagnoses (i.e. cancer, heart disease and dementia) than White Americans. Even when AAs enroll in hospice, they spend less time in hospice than White patients, averaging fewer than seven days in hospice care. Notably, AA hospice enrollees report a higher degree of satisfaction with end of life care when hospice is involved, as compared to AAs who are not enrolled in hospice care. There are several potential barriers that may prevent AAs from enrolling in hospice care including lack of knowledge of hospice care, mistrust in healthcare, perceived discrimination, health literacy. AAs routinely report less knowledge of hospice than White Americans, and the information that AA know about hospice often comes from non-medical professionals and is inaccurate. Some AA have persistent mistrust in healthcare due to events such as the Tuskegee Syphilis Experiments and many AA perceive discrimination when accessing healthcare. Data shows that health literacy is a stronger predictor of hospice use than race and older AAs are more likely to possess low health literacy. The driving hypothesis of this research is that by providing clear and accurate information to older AAs will help address the underutilization of hospice by clarifying misperceptions, building trust, and overcoming literacy barriers. Patient decision aids (PtDAs) are an evidence-based approach to improve patient agency in medical decision making. Research shows that AA report a desire for more agency and autonomy in decision-making yet the use of PtDAs is understudied in AA communities. This proposal offers a unique opportunity to address many of the potential barriers that may prevent older AAs from enrolling in hospice, while simultaneously expanding the literature of SDM specific to older AAs. The goals of this proposal are to evaluate if the relationships between health literacy and hospice knowledge, attitudes, and beliefs is mediated by mistrust in healthcare and perceived discrimination among AAs aged 65 or older (Aim1) and to evaluate the effect of the hospice PtDA on changing hospice knowledge and attitudes and beliefs about hospice in AA aged 65 and older (Aim 2).

Trial Health

On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment

144

participants targeted

Target at P75+ for not_applicable

Timeline

Completed

Started Mar 2019

Typical duration for not_applicable

Geographic Reach

1 country

1 active site

Status

completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

2.2 years study duration

Study Start

First participant enrolled

March 1, 2019

Completed

1.3 years until next milestone

First Submitted

Initial submission to the registry

June 30, 2020

Completed

7 days until next milestone

First Posted

Study publicly available on registry

July 7, 2020

Completed

10 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

April 30, 2021

Completed

Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

April 30, 2021

Completed

1.3 years until next milestone

Results Posted

Study results publicly available

August 30, 2022

Completed

Last Updated

August 30, 2022

Status Verified

August 1, 2022

Enrollment Period

2.2 years

First QC Date

June 30, 2020

Results QC Date

July 14, 2022

Last Update Submit

August 8, 2022

Conditions

Hospice Decision Making

Outcome Measures

Primary Outcomes (3)

Hospice Knowledge Scale
Hospice Knowledge Scale is a 23-item true/false scale. Each question is worth 1 point with 23 being the highest score. Possible scores range from 0 to 23, with higher scores indicate more hospice knowledge.
1 month
Hospice Attitudes and Beliefs Scale
Hospice Attitudes and Beliefs Scale is an 8-item 5-point Likert scale (ranging from Strongly Agree to Strongly Disagree). Each question is scored based on 5 point scale. Maximum score 40 and minimum score 8. Higher scores indicate more favorable opinions of hospice.
1 month
Decision Self Efficacy Scale
Decision Self-Efficacy Scale is an 11-item 5-point Likert scale (ranging from not at all confident to very confident). Maximum score is 100 and minimum score is 0. Higher scores indicate more self-efficacy.
1 month

Study Arms (2)

Intervention

EXPERIMENTAL

Receive hospice patient decision aid

Behavioral: A decision aid for patients considering Hospice care.

Control

NO INTERVENTION

Does not receive hospice decision aid

Interventions

A decision aid for patients considering Hospice care.BEHAVIORAL

A 12 page booklet and 17 min video describing hospice care

Intervention

Eligibility Criteria

Age65 Years+

Sexall

Healthy VolunteersYes

Age GroupsOlder Adult (65+)

You may qualify if:

Self identify as Black or African American
At least 65 years of age

You may not qualify if:

Non-English speakers.
Patients with cognitive Impairments preventing ability to provide informed consent.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

University of Colorado, Denverlead
National Institute on Aging (NIA)collaborator

Study Sites (1)

University of Colorado Denver

Aurora, Colorado, 80045, United States

Location

Related Publications (3)

Tate CE, Perez-Jolles M, Scherer LD, Shiferaw T, Mami G, Matlock DD, Huebschmann AG. "Hospice was Created by the KKK"-Black Americans' Perspectives on Hospice Care. J Racial Ethn Health Disparities. 2025 Feb 27. doi: 10.1007/s40615-025-02340-w. Online ahead of print.
PMID: 40014286DERIVED
Brereton E, Harger G, Matlock DD, Dorsey Holliman B, Tate CE. How Do Patients Describe Hospice Care? A Qualitative Analysis of the Language Used by Older Adults to Describe Hospice Care. J Palliat Med. 2022 Nov;25(11):1692-1696. doi: 10.1089/jpm.2022.0011. Epub 2022 Aug 9.
PMID: 35944273DERIVED
Tate CE, Venechuk G, Pierce K, Khazanie P, Ingle MP, Morris MA, Allen LA, Matlock DD. Development of a Decision Aid for Patients and Families Considering Hospice. J Palliat Med. 2021 Apr;24(4):505-513. doi: 10.1089/jpm.2020.0250. Epub 2021 Jan 13.
PMID: 33439075DERIVED

Results Point of Contact

Title: Dr. Channing Tate, Assistant Professor
Organization: University of Colorado Anschutz Medical Campus

Study Officials

Channing E Tate, MPH, PhD(c)
University of Colorado, Denver
PRINCIPAL INVESTIGATOR

Publication Agreements

PI is Sponsor Employee: No
Restrictive Agreement: No

Study Design

Study Type: interventional
Phase: not applicable
Allocation: RANDOMIZED
Masking: SINGLE
Who Masked: PARTICIPANT
Purpose: HEALTH SERVICES RESEARCH
Intervention Model: PARALLEL
Sponsor Type: OTHER
Responsible Party: SPONSOR

Study Record Dates

First Submitted

June 30, 2020

First Posted

July 7, 2020

Study Start

March 1, 2019

Primary Completion

April 30, 2021

Study Completion

April 30, 2021

Last Updated

August 30, 2022

Results First Posted

August 30, 2022

Record last verified: 2022-08

Data Sharing

IPD Sharing: Will not share

Locations

US(1)

Brief Summary

Trial Health

Trial Health Score

Trial Relationships

Related Scientific Literature

Study Timeline

Study Start

First Submitted

First Posted

Primary Completion

Study Completion

Results Posted

Conditions

Outcome Measures

Primary Outcomes (3)

Study Arms (2)

Intervention

Control

Interventions

Eligibility Criteria

You may qualify if:

You may not qualify if:

Sponsors & Collaborators

Study Sites (1)

Related Publications (3)

Results Point of Contact

Study Officials

Publication Agreements

Study Design

Study Record Dates

Data Sharing

Locations