Nurse-Led Palliative Care Improves Knowledge and Preparedness in Caregivers of Patients with Idiopathic Pulmonary Fibrosis.

RATIONALE Patients with Idiopathic Pulmonary Fibrosis (IPF) and their caregivers experience stress, symptom burden, poor quality of life (QOL), and inadequate preparedness for end of life (EOL) care planning as the disease progresses. The hypothesis for this study was early introduction of palliative care in the course of IPF would improve knowledge and preparation for the EOL, patient reported outcomes, and advance care planning in IPF patients and their caregivers. OBJECTIVES We sought to determine the feasibility, acceptability and efficacy of a nurse-led early palliative care intervention, entitled "A Program of SUPPORT" in patients with IPF and their caregivers. METHODS Patients with Idiopathic Pulmonary Fibrosis, diagnosed in the previous year from their initial center visit, and their caregivers from the University of Pittsburgh Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease (ILD) at UPMC were randomized to receive the intervention "A Program of SUPPORT" or usual care. This included a total of 3 research visits aligned with their clinic visit over a period of 6-8 months. We measured feasibility, acceptability, and efficacy of this intervention. RESULTS 136 patient/caregiver dyads were eligible, and a total of 76 dyads were enrolled and participated. Participants were predominately white males > 65 years old. Thirteen percent did not have an identified caregiver. Feasibility was limited; 56% of eligible dyads were enrolled. Eligible dyads (24%) were interested in participating, but too fatigued to stay after their clinic visit. There was high attrition -(20 % of participants died before the study was completed). "A Program of SUPPORT" was acceptable to participants. Efficacy demonstrated significant improvement in caregiver's knowledge, disease preparedness, and confidence in caring for the patient and an improvement in knowledge and advance care planning completion in patient participants. CONCLUSIONS Patients with IPF and their caregivers have unmet needs about knowledge of their disease, self-management strategies, and preparedness for EOL planning. This nurse-led intervention demonstrated acceptability and efficacy on knowledge and advance care plan completion in patients and knowledge, disease preparedness, and confidence in caregivers. Future research should identify additional strategies, including telemedicine resources to reach additional patients and their caregivers earlier in their disease course. Clinical trial is registered with ClinicalTrials.gov (NCT02929017).