Clinical trial NCT03391115: Personalized Experiences to Inform Improved Communication for Minorities With Life Limiting Illness
Official title: Personalized Experiences to Inform Improved Communication for Minorities With Life Limiting Illness
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: COPD
Heart Failure
Cancer
Keywords: Psychosocial
Underserved
Palliative
Electronic Health Record
Narrative
Lead sponsor: University of Colorado, Denver
Sponsor class: OTHER
Collaborators: name: National Institute of Nursing Research (NINR)
First posted: 2018-01-05
Enrollment: 38
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: OTHER
Time perspective: PROSPECTIVE
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.

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.

Detailed description: Racial and ethnic minority patients with a Life Limiting Illnes (LLI) in the United States are underserved in many ways, including quality of palliative care. Specific disparities have been reported in palliative care for minority patients, including sub-optimal patient-provider communication and resulting lower QoL. A potential approach to improve communication is to elicit patients' personal narratives that address their cultural or spiritual values and beliefs, and include them in the EHR. The objective of this observational study is to assess the feasibility and efficacy of a palliative care nursing intervention designed to 1) identify barriers and facilitators for eliciting and recording relevant narratives from the perspectives of the key stakeholders: minority patients with LLI; 2) to conduct usability testing, applying a user-system-environment evaluation process to determine essential requirements for integration of the patient-centered narratives into the EHR; and 3) identify barriers and facilitators of integration of the patient's narrative into daily workflow from the perspectives of key stakeholders: acute care bedside nurse.

Eligibility criteria: Inclusion Criteria: Patients

* 18 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:

  1. metastatic solid cancer or inoperable lung cancer;
  2. COPD with FEV1 values \< 35% predicted or oxygen dependence;
  3. New York Heart Association Class III or IV heart failure (CHF).

Inclusion criteria: Nurse

* 18 years of age or older
* Confirm verbally that they were involved in the care of a patient who is participating in the storytelling intervention

Primary outcomes:
measure: Number of Completed Exit Interviews From Patients on Feasibility of Their Use of Their Narrative Integrated Into EHR
timeFrame: 1-2 weeks
Secondary outcomes:
Other outcomes:
measure: 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.
timeFrame: 1-2 weeks
Locations:
city: Aurora
country: United States
facility: University of Colorado Hospital
state: Colorado
Study officials:
References:
citation: 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.