NCT03391115

Personalized Experiences to Inform Improved Communication for Minorities With Life Limiting Illness

Completed Results posted Last updated 18 February 2021

What this trial tests

trial testing Storytelling Intervention for Patient Participants in COPD in 38 participants. Completed in 30 November 2018.

Timeline

15 November 2017

Primary endpoint
30 November 2018

30 November 2018

Quick facts

Lead sponsor	University of Colorado, Denver
Status	Completed
Study type	OBSERVATIONAL
Enrollment	38
Start date	15 November 2017
Primary completion	30 November 2018
Estimated completion	30 November 2018
Sites	1 location across United States

Drugs / interventions tested

• Storytelling Intervention for Patient Participants
• Storytelling Intervention for Nurse Participants

Conditions studied

• COPD — all drugs for COPD →
• Heart Failure — all drugs for Heart Failure →
• Cancer — all drugs for Cancer →

Sponsor

University of Colorado, Denver

Who can join

18 and older, any sex, with COPD or Heart Failure. Patients with the condition only — healthy volunteers not accepted.

Results — posted to ClinicalTrials.gov

Per-arm endpoint measurements with 95% confidence intervals where reported. Source: trial results section.

Number of Completed Exit Interviews From Patients on Feasibility of Their Use of Their Narrative Integrated Into EHR Primary · 1-2 weeks

Using an observational design, this measure (exit interviews) were completed with 20 inpatient participants and 18 nurse participants. The qualitative data from the interviews were used to define and refine the storytelling intervention. The data collected from the exit interview is qualitative in nature and therefore does not have a numerical value.

Group	Value	95% CI
Inpatient Participants	20
Nurse Participants	18

Usability Assessment Via the System Usability Scale(SUS), Range of 0 to 100, With Higher Number Representing a Better Outcome SUS Scores Have a Range of 0 to 100, the Higher the Number Represents a Better Outcome. Secondary · 1-2 weeks

This study will utilize an observational design to define and refine the storytelling intervention, seeking input from the key stakeholders: providers (acute care bedside nurses).The SUS scale is a 10 item Likert scale which gives a global view of subjective assessment of usability with five item responses options from strongly agree to strongly disagree. SUS yields a single number representing a composite measure of the overall usability of the system being studied. Note that scores for individual items are not meaningful on their own. To calculate the SUS score, first sum the score contribut

Group	Value	95% CI
Nurse Participants	89.71	75 – 100

Sponsor's own description

The purpose of this research is to develop patient-centered palliative care interventions to improve patient-provider communication and Quality of Life (QoL) of ethnic and racial minority patients living with life-limiting illnesses. Eliciting personal experiences is an effective way for patients to communicate their cultural values and beliefs. This study will assess how to integrate the patients' personal experience narratives into the electronic health record (EHR). The primary hypothesis is that the implementation of a patient-centered intervention to elicit personal experiences that are included in the EHR will improve patient-provider communication and patients' QoL.

Publications & conference data

2 peer-reviewed publications reference this trial (live from Europe PMC):

1. "Connection": The Integration of a Person-Centered Narrative Intervention into the Electronic Health Record: An Implementation Study.
   Coats H, Meek PM, Schilling LM, Akard TF, et al · · 2020 · cited 26× · PMID 31905039 · DOI 10.1089/jpm.2019.0376
2. Unpacking characteristics of spirituality through the lens of persons of colour living with serious illness: The need for nurse-based education to increase understanding of the spiritual dimension in healthcare.
   Earlix K, Shive N, Coats H. · · 2022 · PMID 34601788 · DOI 10.1111/jocn.16055