Feasibility and Acceptability of A Mobile Application "SUPPORT-T" to increase access of Palliative Care in patients with Progressive Pulmonary Fibrosis (PPF) and their caregivers

Progressive Pulmonary Fibrosis (PPF) is a serious illness where individuals experience declining physical function, constraints of supplemental oxygen, social isolation, impaired quality of life, and shortened lifespan. Caregivers (CGs) experience high levels of stress and a great sense of fear of the unknown. Loneliness is impactful for both. Individuals with PPF and their caregivers report being poorly informed about the serious nature of the illness and not being referred for educational and symptom-modifying interventions: i.e., palliative care (PC). National guidelines recommend that PC be offered to patients who are diagnosed with serious life-limiting illnesses. PC addresses symptom burden and can assist patients and families/caregivers through the processes of Advanced Care Planning (ACP) for end-of-life (EOL). Patients with unfavorable non-medical factors are even more deprived of access to this key component of comprehensive care and face unnecessary suffering. To address the major gap and answer critically important questions that remain, the PI developed “SUPPORT-T”, an innovative digital health platform adapted from an evidence-based, multi-component, PC intervention “A Program of SUPPORT™” (Symptom management, Understanding of disease, Pulmonary rehabilitation, PC, Oxygen therapy, Research participation, and Transplantation). To reach individuals with PPF, we intend to recruit from two sites; the rural setting will be across South Carolina, and the urban setting will be Mount Sinai in New York City, NY. Community partners will be engaged to alert “hard to reach” patients. “SUPPORT-T” will be delivered: 1) via a digital application over 9 weeks by a nurse interventionist and 2) with virtual quarterly support group participation for one year. Our central hypothesis is that SUPPORT-T is feasible, acceptable, and (because of community outreach and networking) accessible to the broadest population of PPF patients, especially those in rural or urban settings who have limited access to PC. The PI and her study team are uniquely poised to test this hypothesis and generate critically needed data.