Cystic fibrosis foundation position paper: Redefining the CF care model.

Autor: Goetz DM; Department of Pediatrics, Division of Pulmonology & Sleep Medicine, University at Buffalo School of Medicine, Buffalo, NY, USA. Electronic address: dmd22@buffalo.edu., Brown RF; Division of Allergy, Immunology and Pulmonary Medicine, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA. Electronic address: Rebekah.f.brown@vumc.org., Filigno SS; Divisions of Behavioral Medicine and Clinical Psychology and Pulmonary Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA., Bichl SL; Division of Pulmonary Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Il, USA., Nelson AL; Divisions of Medicine and Pediatrics, University of Minnesota, Minneapolis, MN, USA., Merlo CA; Departments of Medicine and Epidemiology, Johns Hopkins University School of Medicine, Baltimore, MD, USA., Juel R; Department of Pediatrics, WVU Medicine Children's, Morgantown, WV, USA., Lomas P; Cystic Fibrosis Foundation, Bethesda, MD, USA., Hempstead SE; Cystic Fibrosis Foundation, Bethesda, MD, USA., Tran Q; Cystic Fibrosis Foundation, Bethesda, MD, USA., Brown AW; Cystic Fibrosis Foundation, Bethesda, MD, USA; Advanced Lung Disease and Transplant Program, Inova Fairfax Hospital, Falls Church, VA, USA., Flume PA; Departments of Medicine and Pediatrics, Medical University of South Carolina, Charleston, SC, USA.
Jazyk: angličtina
Zdroj: Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society [J Cyst Fibros] 2024 Nov; Vol. 23 (6), pp. 1055-1065. Date of Electronic Publication: 2024 Sep 25.
DOI: 10.1016/j.jcf.2024.08.007
Abstrakt: Specialized care is provided to people with cystic fibrosis (pwCF) by interdisciplinary teams nested within the CF Foundation's accredited care center network. This network allows for standardization of the care model, implementation of clinical care guidelines, efficient communication, and outcomes reporting. Recent developments have impacted this care model. Increased access to CFTR modulator therapies has improved overall health for many, although not all pwCF. The COVID-19 pandemic resulted in a rapid adoption of telemedicine and remote monitoring to ensure continuity of CF care. A collaboration of care providers, pwCF, and parent caregivers reevaluated key aspects of the current care model and considered potential modifications based on a widening range of needs. Available evidence was used to evaluate components of routine clinical practice and identify potential adaptations to care. The review included identification of patient characteristics warranting intensive monitoring, while embracing patient-centric care, and emphasizing the integration of telemedicine and at-home health technologies. Despite the changing landscape, the importance of the relationship between pwCF, their support system, and the care team was confirmed as a timeless and foundational aspect of the care model. Shared decision making, partnership, and coproduced care plans between pwCF and their CF care teams guide the best adaptations of the care model to support individual priorities and wellbeing. As health care advances and pwCF age, further research is needed to understand the impact of the care model on long-term health outcomes and to identify best practices that support pwCF to live longer healthier lives.
Competing Interests: Declaration of competing interest The authors declare no conflict of interest.
(Copyright © 2024 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.)
Databáze: MEDLINE
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