Elizabeth T Trandel1, Dio Kavalieratos2, Melissa Basile3, Mara R Hobler4, Anna M Georgiopoulos5, Elaine Chen6, Jessica L Goggin7, Christopher H Goss4, Sarah E Hempstead8, Albert Faro8, Elisabeth P Dellon9. 1. School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania. 2. Department of Family and Preventive Medicine, Division of Palliative Medicine, Emory University, Atlanta, Georgia. 3. Center for Health Innovations and Outcomes Research, Feinstein Institutes for Medical Research, Northwell Health, Manhasset, New York. 4. Department of Medicine, Division of Pulmonary, Critical Care, and Sleep Medicine, University of Washington, Seattle, Washington. 5. Department of Psychiatry, Massachusetts General Hospital, Boston, Massachusetts. 6. Department of Internal Medicine, Pulmonary, Critical Care, and Palliative Medicine, Rush University Medical Center, Chicago, Illinois. 7. Division of Pulmonary, Critical Care, and Sleep Medicine, University of California San Diego, San Diego, California. 8. Cystic Fibrosis Foundation, Bethesda, Maryland. 9. Department of Pediatrics, Division of Pulmonology, University of North Carolina, Chapel Hill, North Carolina.
Abstract
BACKGROUND: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams. METHODS: CF care team members ("clinicians"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF clinicians to provide aspects of PC using a five-point scale ("poor" to "excellent"). Median ratings were compared between groups. RESULTS: A total of 70 patients, 100 caregivers, and 350 clinicians participated. Clinicians consistently rated their PC skills higher than patients or caregivers rated them, particularly for advanced PC skills. While clinicians, patients, and caregivers rated clinicians as "very good" at basic pain assessment and "good" at discussing prognostic uncertainty, clinicians rated themselves more highly at providing most skills, including simultaneous PC and standard CF care (P < .0001), basic depression assessment (P < .001), and discussing transplant, advance directives, end of life, code status, and hospice (all P < .0001). Respondents affiliated with adult CF care teams rated clinicians more highly than respondents affiliated with pediatric CF care teams at discussing lung transplant (P < .001), end of life (P = .006), advance directives (P < .001), code status (P = .012), and hospice (P = .016). Most patients (69%) and caregivers (60%) felt CF clinicians should receive more PC training. CONCLUSIONS: Discrepancies exist among patient/caregiver and clinician perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. Patients and caregivers feel clinicians' more advanced PC skills are lacking. CF clinicians may benefit from PC training to enhance skills and to understand how and when to utilize specialty PC services.
BACKGROUND: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams. METHODS: CF care team members ("clinicians"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF clinicians to provide aspects of PC using a five-point scale ("poor" to "excellent"). Median ratings were compared between groups. RESULTS: A total of 70 patients, 100 caregivers, and 350 clinicians participated. Clinicians consistently rated their PC skills higher than patients or caregivers rated them, particularly for advanced PC skills. While clinicians, patients, and caregivers rated clinicians as "very good" at basic pain assessment and "good" at discussing prognostic uncertainty, clinicians rated themselves more highly at providing most skills, including simultaneous PC and standard CF care (P < .0001), basic depression assessment (P < .001), and discussing transplant, advance directives, end of life, code status, and hospice (all P < .0001). Respondents affiliated with adult CF care teams rated clinicians more highly than respondents affiliated with pediatric CF care teams at discussing lung transplant (P < .001), end of life (P = .006), advance directives (P < .001), code status (P = .012), and hospice (P = .016). Most patients (69%) and caregivers (60%) felt CF clinicians should receive more PC training. CONCLUSIONS: Discrepancies exist among patient/caregiver and clinician perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. Patients and caregivers feel clinicians' more advanced PC skills are lacking. CF clinicians may benefit from PC training to enhance skills and to understand how and when to utilize specialty PC services.
Authors: Melissa Basile; Lincy Jojan; Mara R Hobler; Elisabeth P Dellon; Anna M Georgiopoulos; Jessica L Goggin; Elaine Chen; Christopher H Goss; Sarah E Hempstead; Albert Faro; Dio Kavalieratos Journal: J Palliat Med Date: 2021-04-20 Impact factor: 2.947
Authors: Dio Kavalieratos; Anna M Georgiopoulos; Lara Dhingra; Melissa J Basile; Elliot Rabinowitz; Sarah E Hempstead; Albert Faro; Elisabeth P Dellon Journal: J Palliat Med Date: 2020-09-16 Impact factor: 2.947