Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines

• Type of Material: Article
• Authors: Dio Kavalieratos, Emory University; Anna M. Georgiopoulos, Massachusetts General Hospital; Lara Dhingra, MJHS Institute for Innovation in Palliative Care; Melissa J. Basile, Northwell Health; Elliot Rabinowitz, Boston Children's Hospital; Sarah E. Hempstead, Cystic Fibrosis Foundation; Albert Faro, Cystic Fibrosis Foundation; Elisabeth Dellon, University of North Carolina
• Language: English
• Date: 2020-09-16
• Publisher: MARY ANN LIEBERT, INC
• Publication Version: Final Published Version
• Copyright Statement: © Dio Kavalieratos et al.
• License: Creative Commons Attribution 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1089/jpm.2020.0311
• Title of Journal or Parent Work: JOURNAL OF PALLIATIVE MEDICINE
• Volume: 24
• Issue: 1
• Start Page: 18
• End Page: 30
• Grant/Funding Information: Dr. Kavalieratos reports grants from the Cystic Fibrosis Foundation, the National Institutes of Health (NHLBI; K01HL133466), and the Milbank Foundation during the conduct of the study. The authors received funding and administrative support from the Cystic Fibrosis Foundation.
• Keywords: HEART-FAILURE; INTEGRATION; AMERICAN SOCIETY; palliative care; Science & Technology; QUALITY-OF-LIFE; cystic fibrosis; PSYCHOSOCIAL ISSUES; patient-reported outcomes; ADULTS; CAREGIVER PERSPECTIVES; clinical guidelines; healthcare delivery; Life Sciences & Biomedicine; RESPIRATORY-DISEASES; Health Care Sciences & Services; MENTAL-HEALTH; HOSPICE CARE
• Research Categories: Psychology, General; Health Sciences, Medicine and Surgery; Health Sciences, Health Care Management

Abstract

Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. Although palliative care has been shown to reduce suffering by alleviating illness-related burdens for people with serious illness and their families, little is known regarding the components and structure of various delivery models of palliative care needed to improve outcomes for people affected by CF. The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers.