Kathleen Oare Lindell1, Dio Kavalieratos2, Kevin F Gibson3, Laura Tycon4, Margaret Rosenzweig5. 1. The University of Pittsburgh Dorothy P. & Richard P. Simmons, Center for Interstitial Lung Disease at UPMC, Pulmonary, Allergy & Critical Care Medicine, NW 628, UPMC Montefiore, 3459 Fifth Avenue, Pittsburgh, PA 15213, USA. Electronic address: lindellko@upmc.edu. 2. Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA. 3. The University of Pittsburgh Dorothy P. & Richard P. Simmons, Center for Interstitial Lung Disease at UPMC, Pulmonary, Allergy & Critical Care Medicine, NW 628, UPMC Montefiore, 3459 Fifth Avenue, Pittsburgh, PA 15213, USA. 4. UPMC Palliative and Supportive Institute, Iroquois Building, 3600 Forbes Ave, Pittsburgh, PA 15213, USA. 5. University of Pittsburgh School of Nursing, 336 Victoria Building, 3500 Victoria Street, Pittsburgh, PA 15261, USA.
Abstract
OBJECTIVES: To explore the perceptions of palliative care (PC) needs in patients with idiopathic pulmonary fibrosis (IPF) and their caregivers. BACKGROUND: IPF carries a poor prognosis with most patients succumbing to their illness at a rate comparable to aggressive cancers. No prior studies have comprehensively explored perceptions of PC needs from those currently living with the disease, caring for someone living with the disease, and who cared for a deceased family member. METHODS: Thematic analysis of focus group content was obtained from thirteen participants. RESULTS: Four themes described frustration with the diagnostic process and education received, overwhelming symptom burden, hesitance to engage in advance care planning, and comfort in receiving care from pulmonary specialty center because of resources. CONCLUSIONS: Findings support that patients and caregivers have informational needs and high symptom burden, but limited understanding of the potential benefits of PC. Future studies are needed to identify optimal ways to introduce early PC.
OBJECTIVES: To explore the perceptions of palliative care (PC) needs in patients with idiopathic pulmonary fibrosis (IPF) and their caregivers. BACKGROUND: IPF carries a poor prognosis with most patients succumbing to their illness at a rate comparable to aggressive cancers. No prior studies have comprehensively explored perceptions of PC needs from those currently living with the disease, caring for someone living with the disease, and who cared for a deceased family member. METHODS: Thematic analysis of focus group content was obtained from thirteen participants. RESULTS: Four themes described frustration with the diagnostic process and education received, overwhelming symptom burden, hesitance to engage in advance care planning, and comfort in receiving care from pulmonary specialty center because of resources. CONCLUSIONS: Findings support that patients and caregivers have informational needs and high symptom burden, but limited understanding of the potential benefits of PC. Future studies are needed to identify optimal ways to introduce early PC.
Authors: Thomas J Richards; Naftali Kaminski; Fred Baribaud; Susan Flavin; Carrie Brodmerkel; Daniel Horowitz; Katherine Li; Jiin Choi; Louis J Vuga; Kathleen O Lindell; Melinda Klesen; Yingze Zhang; Kevin F Gibson Journal: Am J Respir Crit Care Med Date: 2012-01-01 Impact factor: 21.405
Authors: Sabrina Bajwah; Irene J Higginson; Joy R Ross; Athol U Wells; Surinder S Birring; Amit Patel; Julia Riley Journal: Lung Date: 2012-01-05 Impact factor: 2.584
Authors: Kathleen Oare Lindell; Mehdi Nouraie; Melinda J Klesen; Sara Klein; Kevin F Gibson; Daniel J Kass; Margaret Quinn Rosenzweig Journal: BMJ Open Respir Res Date: 2018-02-19
Authors: Catharina C Moor; Marlies S Wijsenbeek; Elisabetta Balestro; Davide Biondini; Benjamin Bondue; Vincent Cottin; Ron Flewett; Liam Galvin; Steve Jones; Maria Molina-Molina; Lurdes Planas-Cerezales; Antje Prasse; Helmut Prosch; Anne-Marie Russell; Michel Viegas; Guenther Wanke; Wim Wuyts; Michael Kreuter; Francesco Bonella Journal: ERJ Open Res Date: 2019-10-21
Authors: Brett R Curtis; Bruce L Rollman; Bea Herbeck Belnap; Kwonho Jeong; Lan Yu; Matthew E Harinstein; Dio Kavalieratos Journal: J Pain Symptom Manage Date: 2021-06-11 Impact factor: 3.612