Publications/Abstracts
1. Educate and Empower: Novel Edu-Therapeutic Model for Supportive Care for Patients and Care Partners Living with ILD
Authors: J. Wescoe1, W. Schaninger2, D. Corwin3
Affiliations: 1Wescoe Foundation for Pulmonary Fibrosis, Coopersburg, PA, United States; 2St. Luke’s University Health Network, Bethlehem, PA, United States.
Event: European Pulmonary Fibrosis Federation (EU-PFF) Pulmonary Fibrosis Patient Summit 2024, Castelldefels, Spain, 2024
Abstract: Interstitial lung diseases (ILDs), such as pulmonary fibrosis, involve lung inflammation and scarring, causing breathlessness, cough, and fatigue, with a life expectancy of 2-3 years post-diagnosis. The Edu-Therapeutic Model integrates evidence-based information with practical support group dynamics, empowering patients and their care partners.
2. Engaging Stakeholders to Design a Curriculum for Community Education About Patient-Engaged Research
Authors: I. Hollin1, S. Kreider2, J. Wescoe3, J. Jorgenson
Affiliations: 1Temple University College of Public Health, Philadelphia, PA, United States; 2Wescoe Foundation for Pulmonary Fibrosis, Coopersburg, PA, United States; 3Stakeholder Advisory Board Member, Hillsborough, NJ, United States
Event: PCORI (Patient-Centered Outcomes Research Institute) Annual Meeting, Washington, D.C., 2023
Abstract: The curriculum includes a 40-minute slide presentation, a four-minute video, and ‘program champions’ to deliver the presentation. The engagement strategy was multifaceted, involving stakeholders at various levels for design, delivery, and receipt of the curriculum.
3. Taking a Deep Breath: Assessing the Benefits and Challenges of Support Groups for Patients Living with Pulmonary Fibrosis and Their Care Partners
Authors: J. Wescoe1, W. Schaninger2, D. Corwin3
Affiliations: 1Wescoe Foundation for Pulmonary Fibrosis, Coopersburg, PA, United States; 2St. Luke’s University Health Network, Bethlehem, PA, United States
Event: Pulmonary Fibrosis Foundation Summit 2023, Orlando, FL, 2023
Abstract: Support groups provide valuable resources of supportive care while navigating pulmonary fibrosis. This study surveyed patient and care partner satisfaction with support groups.
4. Objective Evaluation of Caregiver Burden in Patients with Pulmonary Fibrosis
Authors: A. Martinez-Tapia1, A. Rahman1, J. Johnson2, J. Wescoe3, D.S. Corwin1
Affiliations: 1St. Luke’s University Health Network, Bethlehem, PA, United States; 2Lewis Katz School of Medicine at Temple University, Bethlehem, PA, United States; 3Wescoe Foundation for Pulmonary Fibrosis, Coopersburg, PA, United States
Event: American Thoracic Society Conference, Dallas, TX 2019
Publication: American Journal of Respiratory and Critical Care Medicine, May 1, 2019
Abstract: The study evaluates the burden on caregivers of patients with pulmonary fibrosis, a progressive lung disease. It involves a comprehensive assessment using various metrics to quantify the impact on caregivers’ mental and physical health.
5. Pulmonary Symptomatology in Patients with Pulmonary Fibrosis
Authors: A. Martinez-Tapia1, A. Rahman1, J. Johnson2, J. Wescoe3, D.S. Corwin1
Affiliations: 1St. Luke’s University Health Network, Bethlehem, PA, United States; 2Lewis Katz School of Medicine at Temple University, Philadelphia, PA, United States; 3Wescoe Foundation for Pulmonary Fibrosis, Coopersburg, PA, United States
Event: American Thoracic Society Conference, Dallas, TX 2019
Publication: American Journal of Respiratory and Critical Care Medicine, May 1, 2019
Abstract: This research focuses on the symptoms experienced by patients with pulmonary fibrosis. The study aims to provide a detailed understanding of symptom progression and management, highlighting the need for improved therapeutic approaches.