Underutilization of Hospice in Older African Americans

August 8, 2022 updated by: University of Colorado, Denver
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).

Study Overview

Status

Completed

Conditions

Intervention / Treatment

Study Type

Interventional

Enrollment (Actual)

144

Phase

  • Not Applicable

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • Colorado
      • Aurora, Colorado, United States, 80045
        • University of Colorado Denver

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

63 years and older (Older Adult)

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Description

Inclusion Criteria:

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

Exclusion Criteria:

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Primary Purpose: Health Services Research
  • Allocation: Randomized
  • Interventional Model: Parallel Assignment
  • Masking: Single

Arms and Interventions

Participant Group / Arm
Intervention / Treatment
Experimental: Intervention
Receive hospice patient decision aid
Behavioral: A decision aid for patients considering Hospice care.
A 12 page booklet and 17 min video describing hospice care
No Intervention: Control
Does not receive hospice decision aid

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Hospice Knowledge Scale
Time Frame: 1 month
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
Time Frame: 1 month
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
Time Frame: 1 month
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

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University of Colorado, Denver

Collaborators

National Institute on Aging (NIA)

Investigators

  • Principal Investigator: Channing E Tate, MPH, PhD(c), University of Colorado, Denver

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

March 1, 2019

Primary Completion (Actual)

April 30, 2021

Study Completion (Actual)

April 30, 2021

Study Registration Dates

First Submitted

June 30, 2020

First Submitted That Met QC Criteria

June 30, 2020

First Posted (Actual)

July 7, 2020

Study Record Updates

Last Update Posted (Actual)

August 30, 2022

Last Update Submitted That Met QC Criteria

August 8, 2022

Last Verified

August 1, 2022

More Information

Terms related to this study

Other Study ID Numbers

  • 18-1675
  • R36AG064135 (U.S. NIH Grant/Contract)

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

No

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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