Pulmonary and Sleep Medicine Updates: Winter 2021
Innovative Asthma Mobile Unit Brings Key Service to Underserved Area
In Chicago, a 30-year gap in life expectancy exists between the residents living in the highest and lowest resource neighborhoods. Residents of the lowest resource neighborhoods have higher rates of chronic healthcare conditions. They have less access to high quality medical care and services to address their healthcare needs. Improving access to care can make a significant impact on a child and family’s well-being and prevent adverse health outcomes.
Lurie Children’s remains committed to innovative ways to bring our clinical expertise out into the Chicago communities that need it the most.
The Asthma Mobile Health Program allows families to receive the same high level of multidisciplinary, culturally informed service from Lurie Children’s physicians and allied health professionals they would otherwise receive at one of the outpatient clinics. The only difference is that care is now available in their neighborhood on a mobile unit rather than in a brick-and-mortar facility.
Through a generous philanthropic donation given to the Division of Pulmonary and Sleep Medicine, lead by Terri Laguna, MD, MSCS, the Asthma Mobile Unit launched in October 2021 after data showed that patients from specific geographic areas were unbale to attend their appointments in downtown Chicago for asthma care.
Dr. Avani V. Shah and Emily R. Simmons, APRN-NP, PNP and their multidisciplinary team see patients once a month on the unit. Meeting patients in their own communities alleviates many concerns and stressors for families. For many families, lack of transportation to the main hospital location, time for travel and the cost involved with fuel, parking and/or public transportation are often barriers for accessing care. Seeing patients in their own communities also puts families at ease as they are in a more familiar environment. The end goal is to provide families with easily accessible treatment plans that will then lead to improved asthma care for their children.
Just two months in, the program has had tremendous impact. A patient who was referred to the Division of Pulmonary and Sleep Medicine over a year ago, was unable to attend their downtown appointment given the difficulty of traveling into Chicago. This resulted in repeated asthma exacerbations and uncontrolled symptoms. This family was so relieved to be seen in the Asthma Mobile Unit in their own community that they cried tears of joy and gratitude. The ability to offer specialty care through the mobile unit has removed barriers for this patient and others and will allow Lurie Children’s High Risk Asthma team to deliver high quality medical care to the Chicagoland communities that need us the most.
Lurie Children’s Pediatric Primary Ciliary Dyskinesia Center (PCD) of Excellence
Since being accredited by the PCD Foundation as a Pediatric Primary Ciliary Dyskinesia Center (PCD) of Excellence over two years ago, Lurie Children’s remans committed to making a difference and advancing the research and care of this patient population.
Under the direction of Terri Laguna, MD, MSCS, Division Head of Pulmonary and Sleep Medicine and a board-certified pediatric pulmonologist specialized in diagnosing and treating children with PCD, the Center serves as both a referral and care center for children with PCD across the region. Since the inception of the program there have been 45 newly diagnosed patients by using the tools to confirm the diagnosis including nNO, ciliary biopsy and PCD Genetics. Over half of our PCD patients are from an under-represented minority in the Chicagoland area. To date, there is not a single evidence-based therapeutic intervention for PCD. There have been roughly 3,000 confirmed diagnoses of PCD in North America, however, delayed or missed diagnosis is quite common with this disease and there could be upwards of 25,000 people who are affected and are unaware, emphasizing the importance of timely referrals.
In addition to comprehensive, high-level clinical care, patients in Lurie Children's PCD Center have access to ongoing, cutting edge translational research to better understand and characterize the mechanisms of PCD leading to personalized medicine and treatment in the future. The Center is on track to start entering patients into the PCD Patient Registry – an online national registry of patients with PCD in order to learn more about the disease and set the stage for patients to participate in clinical trials. Dr. Laguna and her team is currently is collecting mucus (sputum) samples from all PCD patients when they come to clinic for research.