Clinical trial NCT05450276: Patient-Reported Outcome Study of Project ECHO for ILD
Official title: Patient-Reported Outcome Study of Project ECHO for ILD
Study type: OBSERVATIONAL
Overall status: UNKNOWN
Conditions: Interstitial Lung Disease
Keywords: Progressive Fibrosing Interstitial Lung Disease
Idiopathic Pulmonary Fibrosis
Interstitial Lung Disease Associated With Systemic Sclerosis
Myositis-Associated Interstitial Lung Disease
Sarcoidosis
Hypersensitivity Pneumonitis
Pulmonary Fibrosis
Lead sponsor: Pulmonary Care and Research Collaborative Limited
Sponsor class: OTHER
Collaborators: name: Genentech, Inc.
First posted: 2022-07-08
Enrollment: 56
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: OTHER
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Patients of pulmonologists and primary care physicians who participate in Project ECHO for ILD.

Brief summary: The study will assess whether patients of providers participating in Project ECHO for ILD experience reduced stress, including financial stress, based on their ability to receive timely and local care and services, The study will employ nested mixed-method design at baseline, at 6 months and at 12 months to answer the study question.

Detailed description: Project ECHO (Extension for Community Healthcare Outcomes) is a knowledge-sharing model to expand the capacity of the health care workforce so that more people can get high quality care for their health conditions in or near the communities where they live. The model brings specialty disease expertise to community providers through its hub-and-spoke networks. The model relies on videoconferencing to connect local providers in non-urban or underserved communities (spoke sites) with an interdisciplinary team of specialist providers at academic medical centers (hubs) during virtual "teleECHO" clinic sessions, which include brief educational lectures and case-based, experiential learning.

The ECHO model addresses barriers of long wait times for a first appointment, the time and expense associated with long distance travel, and the disinclination to follow through on repeated care appointments in the face of these persistent barriers, all with the additional objective of achieving health equity. Most patients perceive the diagnostic and care pathways in ILDs as a major struggle because of lack of awareness about the diseases, delayed access to specialty centers, providers' focus on disease- versus patient-centered care, and lack of reliable information and education about the diseases and supportive care resources.

Eligibility criteria: Inclusion Criteria:

* Confirmed diagnosis of interstitial lung disease
* Not be currently followed by an ILD specialist at an academic institution or must live more than 50 miles away from an academic ILD center

Exclusion Criteria:

-

Primary outcomes:
measure: Change in patients' stress level
timeFrame: Up to 18 months
measure: Patients' satisfaction of care
timeFrame: Up to 18 months
Secondary outcomes:
measure: Change in patients' perceptions regarding local ILD care
timeFrame: Up to 18 months
Other outcomes:
Locations:
city: Boston
country: United States
facility: Pulmonary Care and Research Collaborative, Ltd.
state: Massachusetts
Study officials:
affiliation: Pulmonary Care and Research Collaborative, Ltd.
name: Aliaa Barakat, PhD
role: PRINCIPAL_INVESTIGATOR
References: