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Current Projects

Medication Adherence and Clinical Outcomes in Sarcoidosis

Principal Investigator: Michelle Sharp
Project Number: K23HL148527
Project Dates: 8/26/2021-7/31/202
​Funding Source: NHLBI

Sarcoidosis, one of the most common interstitial lung diseases, affects 49-141 per 100,000 individuals in the United States (US). Compared to US non-Hispanic whites, African Americans have a 3-5 fold higher incidence of sarcoidosis. Up to half of patients develop chronic disease with considerable morbidity. Sarcoidosis is not only a cause of end-stage pulmonary fibrosis, cor pulmonale, and pulmonary hypertension, but can lead to sudden death, neurologic and other solid organ impairment. Despite the impact of the disease, there has been limited research investment or progress in sarcoidosis. Individuals with sarcoidosis require long-term treatment to prevent disease progression. Continuous daily treatment has been associated with better lung function compared to intermittent treatment. This suggests that intermittent medication, such as occurs when patients are non-adherent, may be associated with worse lung function. Our preliminary data suggests higher self-reported medication adherence is associated with higher health related quality of life among individuals with sarcoidosis. In sarcoidosis, treatment can prevent disease progression and higher medication adherence may improve clinical outcomes. Self-management interventions that address patient gaps in knowledge and address barriers and facilitators to adherence have been shown to improve clinical outcomes in other chronic respiratory diseases. Psychological health, social determinants, and treatment characteristics have been associated with self- management and/or clinical outcomes. Our preliminary qualitative data show that individuals with sarcoidosis report knowledge gaps in disease understanding and treatment that may affect their own self-management. Identifying determinants of adherence will identify potential targets for a future self-management intervention tailored for sarcoidosis, which currently has no existing evidence based behavioral interventions. We will enroll 150 individuals from the Johns Hopkins Sarcoidosis Clinic with biopsy proven pulmonary sarcoidosis for at least 12 months and who have been on treatment for at least 6 months into a 12-month longitudinal study. The goal of the proposed study is to evaluate the association between objectively measured medication adherence and clinical outcomes, evaluate determinants that are associated with medication adherence, and develop and refine a self-management intervention for individuals with sarcoidosis. The data will inform an R01 to evaluate the efficacy of a behavioral intervention targeting knowledge gaps, improving coping, and addressing barriers to adherence to increase patient’s ability to manage their sarcoidosis.

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