Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
The Partnerships for Sustaining Daily Care Initiative
The Cystic Fibrosis Foundation made a strategic commitment to develop a multi-pronged approach to help people with cystic fibrosis stick with their treatment plans called Partnerships for Sustaining Daily Care (PSDC). Learn more about this initiative and how you can get involved.
Cystic fibrosis can affect many aspects of people's lives with the disease. Each aspect can represent a barrier to managing daily care, including financial and emotional issues, a person's life stage, personal values, and goals.
Recognizing these challenges, the Cystic Fibrosis Foundation made a strategic commitment to develop a multi-pronged approach to help people with CF stick with their treatment plans called Partnerships for Sustaining Daily Care (PSDC). The goal of PSDC
is to bring together individuals with CF, their families, and care teams to foster productive conversations about aligning personal goals with health goals.
Building partnerships to sustain daily care is complex and demands a comprehensive approach to create solutions without posing additional burdens on people with CF, their families, or care teams.
Consisting of overlapping elements, this approach allows for a continuous process that is informed by community stakeholders engaged to promote dialogue, share ideas, and establish measures to test behavioral interventions before they can be embedded
into specialized CF care.
Engaging stakeholders and promoting dialogue by encouraging people involved in CF care to share their ideas and personal experiences is critical to helping our community learn from each other. It is important to hear how people with CF, their families, and care teams think and talk about “adherence,” approach their daily care, the challenges they face, and what they want from a partner who can help them manage their daily care.
“I like to hear how other patients manage treatments, full-time jobs, and parenting. Sharing best practices or innovative ideas is very helpful. Also it's helpful when the care team brings it up so I feel less like a failure.”
-- Adult living with CF
Finding the right words to discuss the challenges of sustaining a daily care routine can be difficult for many people with CF, their families, and their care teams. To acknowledge that these conversations are important and often difficult, the CF Foundation is asking the community to share their stories about CF treatments with a focus on the daily care plan, the barriers to sustaining that care, and the personal motivations such as individual life goals that compel people with CF to overcome barriers in order to successfully manage their disease.
“If you tell me you're doing your treatments four times a day and you're sitting here with a 50 percent drop in your lung function, it's going to be hard for me to figure out what to say or do. But, if you sit here and say 'Eh, I'm only doing it three times a week,' I'll say, 'OK, great. That gives me a bigger playing field to figure out where to go and figure out what we are going to do to make it better.'”
-- Nurse coordinator at Northwestern University CF Center
Kathy, a parent of a child with CF, describes the importance of encouraging children to be open and honest with their CF care teams.
Communication materials were tested with care teams, patients, and families at six CF care centers. The results from this pilot are being used to inform an educational campaign and to develop tools and training to support successful conversations between patients, families, and care teams around sustaining daily care.
Establishing objective measures and testing behavioral interventions are essential to assess and customize interventions and to compare their impact. Establishing a set of standard adherence measures can trigger more productive conversations on sustaining daily care between patients, their families, and care teams. The CF Foundation is working on several initiatives that provide tools for use in CF care to address concerns of sustaining daily care:
Noah, a pulmonologist, shares a time when he partnered with a person with CF by using objective measures to better understand her care.
Using a systematic process, interventions designed to identify various barriers to adherence and help people with CF overcome them will be designed and tested for how well they can be practically implemented across the care center network. The work will be conducted within the Success with Therapies Research Consortium (STRC), where investigators from both adult and pediatric CF care programs are designing and testing interventions that are effective, practical, measurable, scalable, and sustainable.
Once the most effective and practical interventions and tools are identified, the next step will be to develop training and educational guides to support implementation across the care center network.
These resources will be reassessed as they are practiced in the real world and adapted as appropriate to drive continuous improvement. Training programs that prove to be effective will be embedded into CF care through quality improvement processes.
To move away from a one-sided conversation about “adherence” to prescribed medications toward supporting “partnerships for sustaining daily care,” it is important to acknowledge that these conversations can be awkward or difficult. But over time, these conversations can get easier as the interactions between people with cystic fibrosis, their families, and care teams grow into trusting partnerships.
This is why we invite you to share your stories or brief moments of care encounters -- good and bad -- so your insight can be used to promote a dialogue and exchange perspectives surrounding partnerships for sustaining daily care.
Betsy, a registered nurse, explains how asking open-ended questions helped her partner with an adult with CF to overcome a barrier to vitamins.
These stories will be used to identify strategies, conversation styles, and tips to share with care teams, adults with CF, and their families so that they can apply the PSDC concepts into their regular clinical practice and daily care routines.
So after you read this, take the time to self-reflect. Draw on your own experiences where you've had conversations (good or bad).
We also ask you to help develop, test, and adopt the most effective ways to maintain daily care -- informed by your own personal experiences and those around you -- to be vocal champions to spread these ideas among our broader community.
Send us an email and share your story or ideas about sustaining daily CF care. We're listening at PSDCteam@cff.org.
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