A New Era of CF Care: Possible Future Changes

As people with cystic fibrosis face a widening range of health needs, new clinical guidance is now available for Cystic Fibrosis Foundation-accredited care centers. The guidance reinforces the critical role that care teams play in delivering high-quality, specialized CF care, and encourages a greater level of individualized care for people with CF. 

8 min read
In this article
Summary
  • New clinical guidance was created to help cystic fibrosis care centers care for people with CF as they face a widening range of health needs.
  • The guidance covers how and when routine CF care is provided at care centers, including frequency of visits and options for telehealth and describes all the health care professionals needed to care for people with CF today — within and beyond the core care center team — and how they can work together to best serve people with CF. 
  • The guidance are not requirements, and people with CF and their families may not experience changes right away. Care centers will need time to understand and implement the guidance, and they may need to prioritize changes as their resources and institutions allow.

Overview of New Clinical Guidance 

As people with cystic fibrosis face a widening range of health needs, new clinical guidance is now available for Foundation-accredited care centers. The guidance reinforces the critical role that care teams play in delivering high-quality, specialized CF care, and encourages a greater level of individualized care for people with CF. 

The guidance provides considerations and best practices for CF care while research is ongoing. This is called “interim guidance.” The guidance was published within two documents, called position papers, in the Journal of Cystic Fibrosis:

The position papers include many suggestions for care centers to consider, including:

  • For some people with CF whose overall health is stable, offering the option to reduce the frequency of routine CF care center visits from every three months to every four to six months.
  • Recognizing that visit frequency should change based on life events and health status changes.
  • Using telehealth to supplement in-person visits where appropriate. 
  • Including a pharmacist and access to a genetic counselor in the core CF care team
  • Encouraging partnership with primary care providers for general health matters, such as high blood pressure, high cholesterol, or thyroid issues, in the care of people with CF.

Of course, change takes time. And this guidance is just that — guidance, not requirements. So people with CF and their families may not experience changes right away. Care centers will need time to understand and implement the guidance, and they may need to prioritize changes as their resources and institutions allow. The Foundation will help care centers and people with CF navigate all of this.

Q&A for People With CF

What are position papers?

Position papers describe considerations and best practices for CF care. They offer general guidance for CF care teams based on expert opinion and a review of the available evidence. 

The guidance in the care model and care team position papers applies to all people with CF, not just those on modulators, at all CF care center programs regardless of program size or geography.

How were the position papers created?

A committee of interdisciplinary CF care providers, adults with CF, and parents of people with CF researched and developed the position papers. Their work was informed by a review of published evidence, committee expertise, and a large survey of CF care center team members, people with CF, and caregivers of people with CF.

How will care centers use the position papers?

These position papers will serve as a resource for care teams on best practices in the current era of CF care. They can be used to guide discussions with people with CF and their families in clinic and individualize care plans as appropriate.

Why do the position papers suggest possible changes to care center visit schedules?

Visit frequency should be a shared decision between people with CF, families, and the CF care team based on a full review of health. CF Foundation Patient Registry data shows that many people with CF have already decreased their visit frequency as a result of their improved health status. The new guidance provides a framework for how to approach these discussions and tailor care based on individual priorities and needs.

Why do people with CF whose health is stable still need to see their CF care team at all —  especially if it means taking time off from work or school?

People with CF who are stable in all aspects of their health may be able to see their care teams as little as every four to six months for routine care without compromising their health. Maintaining this access to high-quality, specialized CF care is essential for all people with CF, so that care teams can screen for, monitor, and address CF complications and manage CF treatments, such as CFTR modulators. Visits to CF care centers continue to be the foundation of successful CF care. 

Routine CF care is also important for people with CF to maintain insurance coverage and avoid disruptions in access to treatments.

Why do people with CF need primary care doctors?

The position papers highlight the importance of having a primary care provider to help manage general health issues in partnership with the CF care team. This is because CF care teams may not be fully equipped to manage all of the health care needs of people with CF, especially as they age. Some health complications are specific to CF, while others are not specific to CF and may be better addressed by a primary care doctor (such as high blood pressure or high cholesterol). The Foundation encourages partnerships between CF care teams and primary care doctors.

How can CF care teams help people with CF find medical specialists (such as endocrinologists, cardiologists, or gynecologists) who are knowledgeable about CF?

When possible, CF care teams are encouraged to develop a list of specialists who have some knowledge of CF and with whom they have a relationship. Identifying these specialists may take time, and the availability of specialists who fit these criteria may vary by care center. 

People with CF may also contact CF Foundation Compass to understand potential costs and insurance coverage for medical specialists.

How is the CF Foundation supporting access to telehealth?

The Foundation will continue to advocate for insurance coverage of telehealth services as appropriate and easier access to medical licenses across state lines. These position papers help make the case that telehealth should be offered as part of CF care and may help care centers advocate with their institutions for more support to provide this service.

The Foundation also encourages people with CF to review their insurance benefits to understand telehealth coverage. Compass is prepared to help conduct benefit verifications and explore health insurance plan options during open enrollment.

Do the position papers address CF treatments or just the way care is provided?

The position papers address how specialized CF care is provided at CF Foundation-accredited care centers. They do not address when to stop or start treatments like modulators or airway clearance. Existing CF Foundation clinical guidelines cover many of these topics, and research is ongoing to address new questions that arise.

How to learn more

If you have more questions about the new clinical guidance, please contact caremodel@cff.org.

Share this article
Topics
Adult Care
Have questions? We’re here to help. Call us at 1-800-FIGHT CF

(1-800-344-4823)
Mon - Thu, 9 am - 5 pm ET
Fri, 9 am - 3 pm ET

 

More Ways To Get Help