Melissa Basile1, Lincy Jojan2, Mara R Hobler3, Elisabeth P Dellon4, Anna M Georgiopoulos5, Jessica L Goggin6, Elaine Chen7, Christopher H Goss3, Sarah E Hempstead8, Albert Faro8, Dio Kavalieratos9. 1. Northwell Health, Manhasset, New York, USA. 2. Molloy College, Rockville Centre, New York, USA. 3. University of Washington, Seattle, Washington, USA. 4. University of North Carolina, Chapel Hill, North Carolina, USA. 5. Massachusetts General Hospital, Boston, Massachusetts, USA. 6. University of California San Diego, La Jolla, California, USA. 7. Rush University Medical Center, Chicago, Illinois, USA. 8. Cystic Fibrosis Foundation, Bethesda, Maryland, USA. 9. Emory University, Atlanta, Georgia, USA.
Abstract
Background: Individuals with cystic fibrosis (CF) experience symptoms affecting quality of life and may benefit from palliative care (PC). Objectives: To present results of content analysis from open-ended survey questions assessing knowledge and experiences with PC among CF stakeholders. Design, Setting, Subjects: Online surveys were sent to CF stakeholders through CF-specific listservs predominantly in the United States. Measurements: Responses to five open-ended questions about CF PC-delivery, health care provider training, and lung transplant-underwent content analysis. Responses were coded using NVivo12 Software™. Results: Forty-eight CF adults, 59 caregivers, and 229 providers responded to the open-ended survey questions. Analysis showed 5 primary categories related to CF PC: (1) stakeholder perceptions of PC for CF, (2) delivering PC to people with CF, (3) conversations about PC for CF, (4) perceptions that PC services are underutilized for people with CF, and (5) beliefs that PC services are critical for people with CF considering or pursuing lung transplant. Analysis showed variation among and within groups in defining PC for CF, when, and how to deliver it. Many respondents felt PC was underutilized in CF. Most saw PC as particularly important when considering lung transplant, managing anxiety around transplant, and for goals of care discussions. Some believed PC and lung transplant were mutually exclusive. Conclusion: Respondents felt PC is underutilized for CF, and that people with CF may miss out on the benefits of PC. Among stakeholders, respondents felt people with CF would benefit from access to primary and secondary PC services.
Background: Individuals with cystic fibrosis (CF) experience symptoms affecting quality of life and may benefit from palliative care (PC). Objectives: To present results of content analysis from open-ended survey questions assessing knowledge and experiences with PC among CF stakeholders. Design, Setting, Subjects: Online surveys were sent to CF stakeholders through CF-specific listservs predominantly in the United States. Measurements: Responses to five open-ended questions about CF PC-delivery, health care provider training, and lung transplant-underwent content analysis. Responses were coded using NVivo12 Software™. Results: Forty-eight CF adults, 59 caregivers, and 229 providers responded to the open-ended survey questions. Analysis showed 5 primary categories related to CF PC: (1) stakeholder perceptions of PC for CF, (2) delivering PC to people with CF, (3) conversations about PC for CF, (4) perceptions that PC services are underutilized for people with CF, and (5) beliefs that PC services are critical for people with CF considering or pursuing lung transplant. Analysis showed variation among and within groups in defining PC for CF, when, and how to deliver it. Many respondents felt PC was underutilized in CF. Most saw PC as particularly important when considering lung transplant, managing anxiety around transplant, and for goals of care discussions. Some believed PC and lung transplant were mutually exclusive. Conclusion: Respondents felt PC is underutilized for CF, and that people with CF may miss out on the benefits of PC. Among stakeholders, respondents felt people with CF would benefit from access to primary and secondary PC services.
Authors: Rachel W Linnemann; Patricia J O'Malley; Deborah Friedman; Anna M Georgiopoulos; David Buxton; Lily L Altstein; Leonard Sicilian; Allen Lapey; Gregory S Sawicki; Samuel M Moskowitz Journal: J Cyst Fibros Date: 2015-03-25 Impact factor: 5.482
Authors: Elisabeth P Dellon; Melissa Basile; Mara R Hobler; Anna M Georgiopoulos; Elaine Chen; Jessica Goggin; Christopher H Goss; Sarah E Hempstead; Albert Faro; Dio Kavalieratos Journal: J Palliat Med Date: 2020-02-05 Impact factor: 2.947
Authors: Peter J Mogayzel; Edward T Naureckas; Karen A Robinson; Gary Mueller; Denis Hadjiliadis; Jeffrey B Hoag; Lisa Lubsch; Leslie Hazle; Kathy Sabadosa; Bruce Marshall Journal: Am J Respir Crit Care Med Date: 2013-04-01 Impact factor: 21.405
Authors: J Abbott; J S Elborn; A M Georgiopoulos; L Goldbeck; B C Marshall; K A Sabadosa; B A Smith; A L Quittner Journal: J Cyst Fibros Date: 2015-01-12 Impact factor: 5.482
Authors: Alexandra L Quittner; Janice Abbott; Anna M Georgiopoulos; Lutz Goldbeck; Beth Smith; Sarah E Hempstead; Bruce Marshall; Kathryn A Sabadosa; Stuart Elborn Journal: Thorax Date: 2015-10-09 Impact factor: 9.139