Nurse-led palliative care intervention benefited patients with IPF, caregivers

A nurse-led early palliative care intervention improved knowledge and disease preparedness among patients with idiopathic pulmonary fibrosis and their caregivers, researchers reported in the Annals of the American Thoracic Society.

“To the best of our knowledge, this is the first study to investigate the impact of a nurse-led early palliative care intervention to evaluate knowledge, disease preparedness, confidence, patient-reported outcomes and advance care planning in patients with IPF and their caregivers,” Kathleen Oare Lindell, PhD, RN, nurse scientist and executive director at the Simmons Center for Interstitial Lung Disease at the University of Pittsburgh Medical Center, School of Nursing at the University of Pittsburgh, and the College of Nursing at the Medical University of South Carolina, Charleston, and colleagues wrote.

Researchers enrolled patients with IPF from the Simmons Center for Interstitial Lung Disease at the University of Pittsburgh Medical Center from March 2017 to December 2020. Patients and their caregivers were randomly assigned to receive usual care (n = 26 patients and 22 caregivers) or the “A Program of SUPPORT” nurse-led palliative care intervention (n = 50 patients and 40 caregivers). The study involved three research visits aligned with clinical visits over 6 to 8 months. The intervention focused on nurse-led delivery of education about IPF, the typical disease course, prognosis, treatments and futility of the ICU; training for self-management of common symptoms; caring for the caregivers; and planning for the future as well as development of shared end-of-life goals.

The total retention rate for the nurse-led intervention group was 70% compared with 73% retention in the usual care group. Reasons for discontinuation included death (n = 15), lung transplant (n = 4) and drop-out (n = 5) prior to study completion, according to the results.

The nurse-led intervention was acceptable for both patients and caregivers.

This intervention was associated with significant improvements in knowledge (1.34; 95% CI, 0.26-2.42; P = .016), preparedness (2.66; 95% CI, 1.21-4.11; P = .001) and confidence (1.33; 95% CI, 0.02-2.62; P = .046) among caregivers. Those in the intervention group also had significant improvements in knowledge (0.86; 95% CI, –0.09 to 1.81; P = .075) and advance care planning completion (62% vs. 33%) compared with the usual care group.

“Patients with IPF and their caregivers have unmet needs regarding knowledge of their disease, self-management strategies and preparedness for end-of-life planning. This nurse-led intervention demonstrated acceptability and initial impact on knowledge and advance care planning completion in patients and knowledge, disease preparedness and confidence in caregivers,” the researchers wrote. “Future research should identify additional strategies, including how the presence of a nurse contributes to downstream health care use, telemedicine resources for delivery of early palliative care and further exploration of the unmet needs of caregivers,” the researchers wrote.