IDECIDE-HOSPICE for Hospice Care Awareness

Age: 65+

Sex: Any

Trial Phase: Academic

Sponsor: University of Colorado, Denver

Disqualifiers: Cognitive impairment, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 4

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial aims to understand how older Black adults perceive and understand hospice care. The main focus is on using a decision-making tool, IDECIDE-HOSPICE, to determine if it can improve knowledge and opinions about hospice services. Participants will be split into groups: one will use the tool, and the other will not, allowing researchers to compare results. Individuals who identify as Black or African American and can read and write in English are eligible to participate. As an unphased trial, this study offers a unique opportunity to contribute to important research that could enhance understanding and decision-making in hospice care.

Do I need to stop my current medications for this trial?

The trial information does not specify whether you need to stop taking your current medications.

What prior data suggests that the IDECIDE-HOSPICE protocol is safe?

Research shows that the IDECIDE-HOSPICE decision tool educates people about hospice care. As it is not a medication, it lacks the risks associated with medical treatments. Instead, it provides information to help people make informed decisions.

A study involving nearly 20,000 hospice patients over three years yielded positive results, suggesting the tool enhances understanding and management of hospice care. Since it involves reviewing educational materials, no physical side effects are expected.

The study is labeled "Not Applicable" in phase, focusing on understanding opinions and knowledge rather than testing a new drug or medical procedure. Therefore, the typical safety concerns of drug trials do not apply. Participants will review materials and provide feedback, making it a low-risk option for those interested in learning more about hospice care. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the IDECIDE-HOSPICE protocol because it offers a fresh approach to increasing hospice care awareness. Unlike standard education methods, which often rely on brochures or brief consultations, this protocol utilizes a PtDA (Patient Decision Aid) tool to actively engage patients in learning about hospice care options. This approach aims to not only inform but also empower patients to make more informed decisions about their end-of-life care. By comparing the knowledge and opinions of those who use the PtDA tool with those who don't, researchers hope to uncover new insights into how education tools can effectively change perceptions and improve decision-making in hospice care.

What evidence suggests that the IDECIDE-HOSPICE intervention is effective for increasing hospice care awareness?

Research shows that hospice care can greatly improve patient well-being. Studies have found that patients in hospice care experience better control over depression and enjoy a higher quality of life. Specifically, one study highlighted significant improvements in both depression and overall quality of life with hospice care. Hospice focuses on providing comfort and support at the end of life, rather than attempting to cure the illness. This approach benefits not only the patients but also their families during challenging times. In this trial, the IDECIDE-HOSPICE tool aims to increase understanding and awareness of these benefits among older Black adults. Participants in the intervention arm will review the IDECIDE-HOSPICE decision tool to enhance their knowledge of hospice care. ^{1 2 6 7 8}

Who Is on the Research Team?

Channing E Tate, PhD, MPH

Principal Investigator

University of Colorado School of Medicine

Are You a Good Fit for This Trial?

This clinical trial is for older Black adults to explore their understanding and attitudes towards hospice care. Specific eligibility criteria are not provided, so it's important to contact the study organizers for detailed information on who can participate.

Inclusion Criteria

Identifies as Black or African American

Can read and write English

Exclusion Criteria

I am unable to understand and give consent for medical procedures due to cognitive impairment.

Unable to read/write English

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Participants review the PtDA decision tool and complete surveys to assess knowledge and attitudes toward hospice

3 months

2 visits (in-person or virtual)

Control

Control group participants complete surveys and review an attention control activity booklet

3 months

2 visits (in-person or virtual)

Follow-up

Participants are monitored for changes in knowledge and attitudes toward hospice

4 weeks

What Are the Treatments Tested in This Trial?

Interventions

• IDECIDE-HOSPICE

Trial Overview The intervention being tested in this trial is called IDECIDE-HOSPICE, which likely involves educational or decision-making aids designed to inform participants about hospice care options.

How Is the Trial Designed?

Group I: Interview Experimental Treatment 1 Intervention

20 of the 200 Intervention participants will complete an interview using qualitative methods surrounding the topic of hospice care and the PtDA.

Group II: Intervention Experimental Treatment 1 Intervention

200 participants reviewed the PtDA decision tool for education on hospice care and subsequently completed a second survey which was identical to the first.

Group III: Control Active Control 1 Intervention

200 of the 400 participants completed two identical surveys one month apart but did NOT review the PtDA decision tool prior to completing the second survey timepoint. Instead, these participants reviewed an 8-page attention control activity booklet. These participants are used as a control group in assessing any change in knowledge or opinions of hospice after the intervention group reviewed the PtDA.

Who Is Running the Clinical Trial?

University of Colorado, Denver

Lead Sponsor

Trials

1,842

Recruited

3,028,000+

Published Research Related to This Trial

A study analyzing data from 19,747 hospice/palliative care patients over three years showed significant improvements in various patient outcomes, including symptom control and family care, although pain management did not improve.

The findings indicate that systematic data collection and feedback have led to better and more consistent patient outcomes in hospice/palliative care services across Australia.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking. Currow, DC., Allingham, S., Yates, P., et al.[2021]

In a study of 65 hospice and palliative care patients, 78% had events that led to their admission, and 62% experienced additional adverse events during their stay, highlighting the prevalence of symptomatic adverse events in this population.

The study found an average of 0.13 adverse events per patient per day, indicating that even in the absence of initial events, patients are at high risk for complications, which can worsen their overall health status.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Adverse events in hospice and palliative care: a pilot study to determine feasibility of collection and baseline rates. Currow, DC., Agar, MR., To, TH., et al.[2011]

In Australia, over 85% of patients referred to specialized hospice/palliative care services have cancer, highlighting the importance of these services in cancer care, with data collected from 5,395 patients across 6,379 admissions.

The Palliative Care Outcomes Collaboration (PCOC) revealed significant variations in patient outcomes, such as stability after an unstable phase (12-fold differences) and improvements in symptom scores (seven-fold differences), indicating the need for ongoing data collection and benchmarking in palliative care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Is it feasible and desirable to collect voluntarily quality and outcome data nationally in palliative oncology care? Currow, DC., Eagar, K., Aoun, S., et al.[2008]

Citations

1. withpower.com withpower.com/trial/phase-aging-5-2023-dc904

IDECIDE-HOSPICE for Hospice Care Awareness A study analyzing data from 19,747 hospice/palliative care patients over three years showed significant improvements in various patient outcomes, including ...

2. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC3036771/

Improving Hospice Outcomes through Systematic ... Results showed improved patient depression (p.<.001) as a result of the intervention, and improvement in both groups in patient quality of life (p.<.001). No ...

3. jpsmjournal.com jpsmjournal.com/article/S0885-3924(05)00004-7/fulltext

The National Hospice Outcomes Project: Development and ... In 2003, more than 3,300 hospice providers cared for approximately 950,000 dying patients. Hospice has been suggested as a model for quality end-of-life care.

4. sciencedirect.com sciencedirect.com/science/article/pii/S0260691723002757

The Death Café: Effectiveness of a hospice care ... The Death Café program can address students' negative emotions and perceptions of death. Students gained personal benefits and professional benefits.

5. patientdecisionaid.org patientdecisionaid.org/wp-content/uploads/2020/09/Hospice-DA-2019-9.16.20.pdf

IDECIDE Understanding hospice. Hospice is a type of palliative care for people near the end of life. It is a treatment philosophy. Its goal is to deliver care that ...

6. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC3868266/

Patient Safety Incidents in Hospice Care: Observations ... Patient safety incidents were identified that involved issues in clinical process, medications, falls, family or caregiving, procedural problems, documentation ...

7. ahrq.gov ahrq.gov/sites/default/files/2024-10/smucker-report.pdf

Final Progress Report: Patient Safety in Hospice Care But hospital data tell only part of the story – missing in these initial patient safety reports were data from the front lines of medicine where the majority of.

8. cms.gov cms.gov/medicare/quality/hospice/current-measures

Current Measures The Hospice Care Index (HCI) captures care processes occurring throughout the hospice stay, between admission and discharge. The HCI is a single ...