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

NCT03391115 | Completed Results

• 2 other identifiers: 17-1885.cc1K99NR016686-01A1
• Study Type: observational
• Target: 38
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

COPD; Heart Failure; Cancer

Keywords

Psychosocial; Underserved; Palliative; Electronic Health Record; Narrative

Outcome Measures

Primary Outcomes (1)

• Number of Completed Exit Interviews From Patients on Feasibility of Their Use of Their Narrative Integrated Into EHR

  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.

  1-2 weeks

Other Outcomes (1)

• 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.

  1-2 weeks

Study Arms (2)

Inpatient Participants

Patients admitted to University of Colorado Hospital with at least one of the following diagnoses: * Heart Failure * COPD * Cancer

Behavioral: Storytelling Intervention for Patient Participants

Nurse Participants

Bedside nurses who provide care at the inpatient level for the following diseases: * Heart Failure * COPD * Cancer

Behavioral: Storytelling Intervention for Nurse Participants

Interventions

Storytelling Intervention for Patient Participants BEHAVIORAL

The storytelling intervention consists of an audio-recorded interview with each patient participant prompted the participant to share their story with questions such as: tell me about your illness, tell me how your illness has affected your emotions, relationships, and spirituality. The interview transcripts will be used to co-create a 1 page patient story using these criteria:1) written in the first person; 2) nonjudgmental; 3) captures the participant's voice; 4) accurately reflects content of the interview; and 5) non-labeling. Once the story has been approved by the participant, I will upload it to the EHR.

Inpatient Participants

Storytelling Intervention for Nurse Participants BEHAVIORAL

Once the patient's story is uploaded to the EHR, automatic alerts will be sent to the participant's EHR-assigned nurses. For usability testing, nurse participants will 1) provide content expertise of the workflow processes, and 2) put the storytelling intervention through in-house usability testing to check the "strength" of EHR features and user-friendliness. Data will be collected with exit interviews and completion of a questionnaire: the System Usability Scale which asks them to rank their satisfaction with specific elements such as: how the story is labeled and presented in the EHR, any technical navigation EHR difficulties, and use of the material.

Nurse Participants

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Inpatient population description: Patient's on inpatient with the following diagnoses: * COPD * Heart Failure * Cancer Nurse patient population: Bedside nurses who are involved in the care of a patient who is participating in the storytelling intervention with the diagnoses listed above.

You may qualify if:

• years of age or older
• able to read English
• capable of giving informed consent
• self-identifying as part of a racial or ethnic minority
• diagnosed with at least one LLI. The operational definition of LLI eligible for this study includes the following diagnoses:
• metastatic solid cancer or inoperable lung cancer;
• COPD with FEV1 values \< 35% predicted or oxygen dependence;
• New York Heart Association Class III or IV heart failure (CHF).
• years of age or older
• Confirm verbally that they were involved in the care of a patient who is participating in the storytelling intervention

Sponsors & Collaborators

• University of Colorado, Denver: lead
• National Institute of Nursing Research (NINR): collaborator

Study Sites (1)

University of Colorado Hospital

Aurora, Colorado, 80045, United States

Location

Related Publications (1)

• Coats H, Meek PM, Schilling LM, Akard TF, Doorenbos AZ. "Connection": The Integration of a Person-Centered Narrative Intervention into the Electronic Health Record: An Implementation Study. J Palliat Med. 2020 Jun;23(6):785-791. doi: 10.1089/jpm.2019.0376. Epub 2020 Jan 6.

  PMID: 31905039 DERIVED

MeSH Terms

Conditions

Pulmonary Disease, Chronic Obstructive; Heart Failure; Neoplasms; Narration

Condition Hierarchy (Ancestors)

Lung Diseases, Obstructive; Lung Diseases; Respiratory Tract Diseases; Chronic Disease; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms; Heart Diseases; Cardiovascular Diseases; Communication; Behavior

Results Point of Contact

• Title: Heather Coats, PhD, APRN-BC, PI
• Organization: University of Colorado, College of Nursing

heather.coats@cuanschutz.edu

303-724-3740

Publication Agreements

• PI is Sponsor Employee: No
• Restrictive Agreement: No

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: December 8, 2017
• First Posted: January 5, 2018
• Study Start: November 15, 2017
• Primary Completion: November 30, 2018
• Study Completion: November 30, 2018
• Last Updated: February 18, 2021
• Results First Posted: December 27, 2019

Record last verified: 2021-01

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)