Connective tissue disease-associated interstitial lung disease (CTD-ILD) is a rare and complex condition that affects some individuals with autoimmune disorders such as rheumatoid arthritis (RA). It can lead to inflammation and progressive scarring of the lungs, significantly affecting quality of life and overall prognosis.1 Current clinical guidelines recommend that patients with CTD-ILD receive care at specialized academic medical centers with multi-disciplinary teams experienced in managing interstitial lung disease (ILD).2 These centers, however, are often located in urban areas, making access particularly challenging for patients living in rural and underserved regions. In rural, medically underserved areas, the nearest ILD centers can be three or more hours away, posing substantial barriers to timely, consistent, and expert care. These logistical constraints make it difficult for patients residing in rural areas to access the high-quality, specialized care required to manage CTD-ILD effectively. The Teleconsultation Approach to CTD-ILD Care Delivery in Rural Underserved Communities (TRUST Initiative) it looking to address this gap in access to specialized care. The TRUST Initiative aims to evaluate whether integrating teleconsultation into a personalized, multidisciplinary care model, through regular, structured teleconsultation visits, can enhance the quality and coordination of treatment for patients and potentially other rural underserved patient populations. This model utilizes a regional rheumatologist, a regional pulmonologist and, an interstitial lung disease (ILD) specialist at the Mayo Clinic in Rochester, Minnesota. This model seeks to overcome the geographic and logistical challenges that prevent patients from accessing specialty care. It also offers a replicable care model for managing other complex chronic diseases in underserved rural communities by leveraging collaborative care, virtual health technology, and structured communication workflows. The study will not only track clinical outcomes such as pulmonary function but also evaluate patient satisfaction, highlighting both the effectiveness and acceptability of this care model. By addressing disparities in access to specialty care, the TRUST Initiative aims to inform future healthcare delivery strategies for rare and complex diseases in rural and underserved settings nationwide.
Study Type
OBSERVATIONAL
Enrollment
10
St. Lawrence Health
Potsdam, New York, United States
Patient Satisfaction
a. Scores from a patient satisfaction survey to assess the perceived quality of teleconsultations-based care including assessments of quality and access to care, cost, and timesaving related to the teleconsultation model. Conducted at the baseline, 6 month, and 12 month visits.
Time frame: 12 months
Healthcare Access Metrics
1. Number and percentage of scheduled teleconsultation visits completed. 2. Adherence rate of teleconsultation arm against their own historical data
Time frame: 12 months
Care Coordination and Clinical Outcomes
a. Frequency and nature of communication between local and teleconsulting providers.
Time frame: 12 months
Dyspnea-12
Annual change in the Dyspnea-12 questionnaire (0-36) checked at months 0, 6, and 12
Time frame: 12 months
Change in FVC
Annual change in FVC relative to the 24 months prior to enrollment.
Time frame: 12 months
Change in DLCO
Annual change in DLCO relative to the 24 months prior to enrollment.
Time frame: 12 months
ER Visits
Annual number of ER visits for CTD-ILD exacerbation, with comparison to two years of historical data, teleconsultation arm.
Time frame: 12 months
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