1. Health disparities have been incorporated into the dialogue and research around chronic lung disease for a while, driven by awareness and interest of the impact of behavioral (e.g. smoking) and environmental factors (e.g. air pollutants, occupational exposures, etc.) on chronic lung diseases, primarily asthma and COPD. In the last couple of years there have been a couple of papers discussing health disparities in interstitial lung disease (ILD), a heterogenous group of lung diseases that causes inflammation and scarring. Part of this delay reflects limited epidemiologic data on ILD in general, with the most prevalent subtype (IPF) considered a disease that primarily affects older, white male smokers – although notably most of the large epidemiologic studies and clinical trials in ILD have been conducted primarily in white patient populations. Last year a study was published in the European Respiratory Journal which addressed the impact of race on mortality in ILD and found that African-American patients were likely to be younger at the time of diagnosis and have improved survival compared to non-African American patients, whereas patients of Asian and Hispanic origins fared worse. While I interpret this difference to likely be reflective of variation in the subtypes of ILD observed across races (the clinical course and prognosis varies significantly across types), the editorials and responses to the paper gravitated toward the potential for racial genetic differences as an explanation. This comes at a time when the field is simultaneously energized by the potential to identify genetic polymorphisms which may predict a more severe, or medication refractory disease course and unfortunately distracts from conversations to address big holes in the field including epidemiologic studies in diverse patient populations that provide more generalizable descriptions of ILD patients, developing and conducting inclusive clinical trials and addressing barriers to care that contribute to health disparities and may impact outcomes and availability of advanced treatment outcomes (including lung transplantation).
2. My primary research interest is in understanding the clinical effectiveness of management decisions in ILD and using clinical variability to study, describe and characterize clinical pathways in an effort to standardize care by providing stakeholder support. There are multiple structural stratifiers likely at play. To begin with, income is likely a big structural stratifier. ILD is often misdiagnosed and as a result incorrectly managed in the community. Evaluation at a center with ILD experience requires the financial resources to not only travel to the center for evaluation, but also the resources to needed to allow for the extensive diagnostic workup, the medications which often have significant out of pocket costs, and other important parts of management including pulmonary rehabilitation and mental health care. Education is another structural stratifier. Individuals with a higher education level are more likely to research and understand the complexities of diagnosis and management, and to be aware of and therefore prioritize lifestyle modifications that improve their disease course (exercise/pulmonary rehabilitation/smoking cessation/professional home cleaning of mold and/or water damage) and treatment options (lung transplantation, enrollment in clinical trials). Social support serves as an intermediary determinant. Patients often experience a significant change in their ability to engage in activities of daily living. The need for supplemental oxygen, reduced exercise tolerance, frequent procedures for diagnosis and management, increased burden of hospitalizations and increase in comorbidities, including cardiovascular and cerebrovascular diseases all require a social support team. While our ILD center has programs that attempt to address the above structural stratifiers (increased Telehealth capabilities, development of remote monitoring, in person and remote educational sessions and support groups, and community events for providers and patients, the progressive need for assistance and in-home support is more challenging to address.