Cystic Fibrosis Foundation Position Paper: Redefining the Cystic Fibrosis Care Team
Rebekah F. Brown, Charlotte T. Close, Molly G. Mailes, et al. Cystic fibrosis foundation position paper: Redefining the cystic fibrosis care team. J Cyst Fibros 2024 Nov;23(6):1045-1054 PMID: 39327194
Purpose/Background
Specialized cystic fibrosis care centers offer care for people with CF, including diagnosis, management, and treatment. These centers are staffed by ixnterdisciplinary teams that provide comprehensive care for people with CF. This focused approach improves outcomes for a complex condition by delivering specialized, coordinated care and has resulted in improved survival for people with CF.
The CF care team historically includes a physician, program coordinator, nurse, respiratory therapist, dietitian, and social worker. Other disciplines and specialists — such as mental health, gastroenterology, endocrinology, ENT, and others — have been more engaged to address a variety of CF issues that are increasingly prevalent in the aging CF population.
In the era of CFTR modulator therapy available for almost all people with CF, there have been reductions in hospitalizations and improvements in
Methodology
Through a request for applications, an interdisciplinary committee was convened consisting of CF care team members, caregivers of people with CF, and adults living with CF. The committee reviewed literature on relevant topics, shared clinical expertise, and discussed lived experiences. This information informed the committee’s efforts to outline best practices for the structure of the care team with the aim of tailoring care to meet the changing needs of people with CF.
Key Components of Care Team Structure | |
| Core Team | Health care team members whose services are required to provide routine clinical care for all people with CF. This position paper expands the core team to include a pharmacist, mental health coordinator, and
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| Essential Partners | Health care providers whose expertise is needed because of complications that are CF-related and highly prevalent among people with CF. This list of essential partners is not exclusive; it may change over time based on the individual needs of each person with CF. Some of these providers may be part of the core team depending on the structure and size of the program.
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| Trained and trusted referrals | Providers who may have more limited expertise in CF, but whose services can be requested on a referral basis to assistanaging less common CF complications or non-CF-related complications. People with CF do not make up the majority of their patient population and they may not be at the same institution as the core team. Education about CF may be required depending on the level of CF experience. For example (not exclusive):
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| Programmatic components | Team members and services that contribute to care of people with CF by supporting the general operations of the CF care team.
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Unanswered Questions:
- What is the feasibility of integrating these new members into the CF care team in a timely and sustainable manner?
- What best practices can be learned and shared between care centers to promote consistent and high-quality care?
- How will care centers navigate relationships with essential partners and trained and trusted referrals in the ever-changing health care landscape?
- Are there opportunities to share services and expertise between programs depending on the size of the program and availability of telehealth?
Further Reading:
Goetz DM, Brown RF, Filigno SS, et al. Cystic fibrosis foundation position paper: Redefining the CF care model. J Cyst Fibros. 2024 Nov;23(6):1055-1065. doi: 10.1016/j.jcf.2024.08.007. Epub 2024 Sep 25. PMID: 39327191.
Use of this Summary Language:
The CF Foundation intends for this executive summary of its position paper to summarize the published position paper. The published position paper summarizes evidence, and provides reasonable clinical guidance based on that evidence, to clinicians, patients, and other stakeholders. Care decisions regarding individual patients should be made using a combination of this guidance, the associated benefit-risk assessment of treatment options from the clinical team, the patient’s individual and unique circumstances, as well as the goals and preferences of the patients and families that the team serves, as a part of shared decision making between the patient and clinician. The position paper is intended to be location agnostic and are applicable to individuals with CF in all settings including but not limited to outpatient clinics, hospitals, in-home, psychiatric facilities, long-term care facilities, incarceration, detention, and foster care settings.
This executive summary was prepared by:
Alyssa A. Perez, MD, MEd (University of California San Francisco) and Charlotte Close, MS, CGC (Columbia University Irving Medical Center)
The position paper was published in 2024 and reviewed in 2025, at which time it was determined that no update is needed.
