• August 2020

    Interstitial lung disease program focuses on comprehensive, individualized patient care

Interstitial lung disease or diffuse parenchymal lung disease comprises a large group of more than 150 heterogeneous disorders. As a result, patients with these disorders are a difficult group to treat because many of the therapies are individualized to each patient. The Interstitial Lung Disease Clinic at Baylor University Medical Center, part of Baylor Scott & White Health, provides comprehensive care to patients with ILD.

At Baylor Dallas and Baylor Scott & White All Saints Medical Center – Fort Worth, patients have access to a nationally recognized center with experts in ILD, pulmonary hypertension and transplant who provide accurate diagnoses and appropriate treatment plans. A key component of the program is education of both patients and providers. Best practices have been developed to meet the unique needs of patients with ILD and provide support to community physicians.

“We do a lot of co-management with our colleagues in the community as we clearly could not take care of all ILD patients in the area,” says Yolanda Mageto, MD, MPH, medical director of interstitial lung disease at Baylor Dallas. “We are always available for consults and to answer questions. We also have a large referral base of patients who are in rural areas and do not have regular access to large centers. We also see these patients and work with their local providers to do what is best for the patient.”

The center always looks for ways to improve the lives of its patients. In response to these efforts, Baylor Dallas has received a grant from the Three Lakes Foundation to develop a novel program for patients with pulmonary fibrosis, as well as providers. The Progressive Fibrosing ILD Quality of Life/Pathfinder Program will develop an ILD nurse position role that will be a liaison between community physicians and the ILD Program at Baylor Dallas. 

For patients, a program will be developed to train patients, caregivers and volunteers to be “first responders” to patients who have received a diagnosis of pulmonary fibrosis. A newly diagnosed patient will be paired with a “seasoned” patient who will help the patient deal with the diagnosis from the social standpoint, dealing with non-medical issues and concerns, such as medications, disability insurance and oxygen use.

“This is a unique and exciting research study because such a program doesn’t yet exist in the ILD world,” Dr. Mageto says. “It is similar to the patient navigation that many cancer programs offer, but it will be geared to the needs of ILD patients. We will look at patients who receive certain educational interventions and those who do not to validate whether the educational components improve their quality of life. We hope to make it portable to other institutions using their local support groups working with their ILD centers to make life better for patients with ILD.”

The advanced lung disease group at Baylor Dallas has numerous ongoing research studies into new treatments for pulmonary fibrosis, pulmonary hypertension, lung transplant, scleroderma, asthma and allergic bronchopulmonary aspergillosis. Two of the trials are testing two brand-new anti-fibrotic agents for pulmonary fibrosis. Another trial will look at patients with pulmonary fibrosis who develop pulmonary hypertension as a complication. Currently, there are no approved drugs for treatment of that patient population. An additional study will look at treating scleroderma with a new biologic agent. All three trials are being administered through Baylor Scott & White Research Institute, the research and development arm of Baylor Scott & White Health.

“While with COVID-19 all studies have been put on hold nationally, we are still looking for patients and starting to screen again to be ready to rapidly re-engage once it is safe for our patients and providers to move forward,” Dr. Mageto says.

For more information on the Advanced Lung Disease Program at Baylor Dallas or to make a referral, call 214.820.6856.