Defining palliative care in cystic fibrosis: A Delphi study

Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society
E P DellonKaren Homa

Abstract

The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care. A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions. An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan. Modified Delphi methodology was used to define palliative care in CF. The definition will be used as the foundation for development of CF-specific palliative care guidelines.

Associated Clinical Trials

Citations

Feb 6, 2020·Journal of Palliative Medicine·Elisabeth P DellonDio Kavalieratos
May 10, 2020·Pediatric Pulmonology·Elizabeth T TrandelElisabeth P Dellon
May 28, 2019·Pediatric Pulmonology·Adrienne P Savant, Susanna A McColley
Jul 2, 2020·Pediatric Pulmonology·Siddhartha G KapnadakElisabeth P Dellon

❮ Previous
Next ❯

Related Concepts

Related Feeds

CFTR Mutant Structural Therapy

Over 1700 different mutations in the CFTR genes have been shown to cause cystic fibrosis. Here is the latest research on structural therapy for CFTR mutants.

Related Papers

British Dental Journal
J Woolgrove
Archives de pédiatrie : organe officiel de la Sociéte française de pédiatrie
Isabelle Sermet-GaudelusGroupe de travail dépistage de la Fédération des centres de ressources et de compétences de la mucoviscidose
European Spine Journal : Official Publication of the European Spine Society, the European Spinal Deformity Society, and the European Section of the Cervical Spine Research Society
Tasha R StantonMark J Hancock
Canadian Journal on Aging = La Revue Canadienne Du Vieillissement
Wendy DugglebyJennifer Swindle
© 2022 Meta ULC. All rights reserved