Background: Little is known about the palliative care needs of patients awaiting lung transplantation. The aim of this study was to describe these needs in patients undergoing evaluation for or awaiting lung transplantation.
Methods: Cross-sectional survey using an adapted version of the Needs at the End-of-life Screening Tool (NEST-13) at a US-based transplant program.
Results: Among the 111 participants, 83.5% were White, 60.0% were female, and almost three-quarters had either restrictive or obstructive lung disease. The greatest palliative care needs included difficulty being physically active (mean: 7.9/10; SD: 2.6; median: 9.0), physical symptoms (mean: 7.4/10; SD: 2.6; median: 8.0), missing work due to illness (mean: 6.2/10; SD: 4.0; median: 8.0), and concerns that life might end (mean: 5.1/10; SD: 3.6; median: 5.0). Participants reported that religious/spiritual beliefs contribute to their sense of purpose (mean: 4.1/10; SD: 3.9) but had few unmet needs in this area (mean: 0.9/10; median: 0.0). Only 6.4% reported seeing a palliative care specialist, and 48.2% were unsure what a palliative care specialist is.
Conclusion: There are substantial palliative care needs among lung transplant candidates, particularly physical symptoms and end-of-life concerns. These findings support integrating palliative care and end-of-life discussions in the management of lung transplant candidates.
© 2020 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.