Engaging Patients and Care Partners with Pulmonary Fibrosis in Research
Idiopathic Pulmonary Fibrosis (IPF) is a rare, progressive, irreversible lung disease. There is no cure for IPF, although treatments can improve quality of life. Engaging people with IPF in research has unique challenges due to condition characteristics, thereby warranting specialized attention to discover how to best partner with people with IPF, and other critically ill populations, to conduct patient-engaged research.
Treatment Decision Making in Pediatric Orthopedics
Congenital femoral deficiency (CFD) is a condition in which a child is born with a malformed or missing femur, resulting in a shortened limb that may limit functionality. The treatment options for CFD vary substantially in their benefits and risks, and long- term evidence does not reflect superiority of one treatment over another. The best treatment choice is preference-sensitive, depending on individual values, preferences, and priorities.
ALS Healthcare Delivery Models and Costs
Amyotrophic Lateral Sclerosis (ALS) is a progressive, neurodegenerative disease that weakens muscles and reduces their functionality. The goal of clinical care for people living with ALS (PALS) is to slow disease progression, optimize independence, and manage symptoms to reduce disease burden, lengthen survival, and improve quality of life. The Academy of Neurology (AAN) quality measures recommend a multidisciplinary approach to providing healthcare for PALS.
Decision Making in Lung Transplant
Lung transplant is a treatment of last resort for patients with end-stage lung disease. The objective of this research is to understand patient and caregiver priorities, specifically for quality of life outcomes, and informational needs across stages of the lung transplant process to develop and pilot a decision aid for lung transplant. We will use a mixed method approach and collaborate with Temple Lung Center to help improve decision making for patients facing the complex decision to undergo lung transplant.