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.

The objective of this project is to prepare the clinical community for engagement in future patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) efforts. Working alongside a Stakeholder Advisory Board comprised of patients, care partners, and clinicians, we are designing and implementing educational tools for use in the IPF community. Thanks to our community partner, the Wescoe Foundation, we are reaching community members through an existing infrastructure of support groups and disease education groups across Pennsylvania, New Jersey, and Delaware.

This project is funded by Patient-Centered Outcomes Research Institute (PCORI), Eugene Washington Engagement Award Program. For additional information about this research project, please contact Sophia Kreider.

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.

The objective of this research is to improve shared decision making between patients, caregivers and clinicians making treatment decisions for PFFD through a better understanding of patient and caregiver priorities and preferences and through the development of a decision aid.

This research is funded by Shriners Children's and is being conducted in partnership with the pediatric orthopedic team at Shriners Children's Philadelphia. For additional information about this research project, please contact Kiki Schmalfuss.

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.

The objective of this study is to explore the value of multidisciplinary care from various perspectives, including the provider and patient perspective. We will explore the financing of multidisciplinary care, cost of illness across treatment settings, and the value of multidisciplinary care in ALS in terms of quality of care and patient/caregiver satisfaction. The data collected will provide insight into aligning healthcare delivery models with patient expectations.

This research is funded by a grant from Mitsubishi Tanabe Pharma (MT Pharma). For additional information about this research project, please contact Laura Chisholm.

Decision Making in Lung Transplant

Lung transplant is a treatment of last resort for patients with end-stage lung disease. The rate and timeliness of referral for transplant evaluation are contingent upon pulmonologists' prognosis and understanding of the lung transplant process. We conducted a survey to measure physician experience with evaluation referrals, and barriers and facilitators to referral.

The objective of this research is to deepen our understanding of the practice of lung transplant referral. Future research is planned to better understand the decision making that follows referral. For additional information about this research project, please contact Trisha Balaji.