Cystic fibrosis foundation position paper: Redefining the CF care model

Area of Science:

• Pulmonology and Respiratory Medicine
• Health Services Research
• Patient Care Models

Background:

• Specialized care for people with cystic fibrosis (pwCF) is delivered through the CF Foundation's accredited network.
• This network standardizes care, implements guidelines, and facilitates communication and reporting.
• Recent advancements, including CFTR modulator therapies and telemedicine adoption due to COVID-19, necessitate care model reevaluation.

Purpose of the Study:

• To reevaluate the current CF care model in light of new therapeutic options and care delivery methods.
• To identify potential adaptations to routine clinical practice for improved patient outcomes.
• To emphasize patient-centric approaches and integrate emerging health technologies.

Main Methods:

• Review of available evidence on routine clinical practice components.
• Identification of patient characteristics requiring intensive monitoring.
• Collaboration among care providers, pwCF, and caregivers to assess needs and potential modifications.

Main Results:

• New therapies improve health for many pwCF, but not all.
• Telemedicine and remote monitoring are increasingly integrated into CF care.
• Patient-centered care, shared decision-making, and strong patient-care team relationships are vital.

Conclusions:

• The CF care model requires adaptation to incorporate new therapies and technologies.
• Patient-centricity, shared decision-making, and integrated telemedicine support individual priorities.
• Further research is needed to optimize long-term outcomes and best practices for aging pwCF.