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.
Published on October 10, 2015
The Cystic Fibrosis Foundation and the European Cystic Fibrosis Society have collaborated to create new care guidelines for the screening and treatment of depression and anxiety in people with cystic fibrosis and their family caregivers.
Research has shown that individuals with CF and parent caregivers are at an increased risk for depression and anxiety when compared to the general population.
Developed for use by CF Foundation-accredited care centers, the guidelines make recommendations in four areas: prevention, screening, clinical assessment and intervention. The guidelines are intended as the first step toward integrating mental health care into specialized CF care.
"These guidelines demonstrate the commitment of the CF Foundation -- and the European Cystic Fibrosis Society -- to provide holistic care to people with CF and their families," said Bruce Marshall, M.D., senior vice president of clinical affairs at the CF Foundation and a member of the writing committee. "Depression and anxiety are common in CF, but the stigma associated with mental health issues makes people hesitant to talk about them. By making screening and treatment part of the model of care, we hope to address the stigma and improve the lives of people with CF and their families."
Among the recommendations, the guidelines advise care centers to offer voluntary annual screening for people with CF and their caregivers. If the screening suggests that a person may have depression or anxiety, it is recommended they be referred to a mental health professional for a formal assessment and receive treatment, if necessary.
The guidelines were informed by an international depression and anxiety epidemiological study (known as TIDES) that assessed symptoms of depression and anxiety in more than 6,000 patients and more than 4,000 parent caregivers in 45 care centers in the United States and eight European countries.
Studies have found that people with CF and parent caregivers have an increased risk for depression and anxiety, which can have negative effects on CF and overall health. For example, people with CF and depression and/or anxiety are less likely to perform their daily care plans. In addition, they are more likely to have lower lung function, lower body mass index, more frequent hospitalizations and higher health care costs than the general CF population.
The guidelines were developed by a multidisciplinary committee, which included mental health experts, parents of children with CF and an adult with CF.
To facilitate implementation of the guidelines, the CF Foundation has established a mental health task force to support the addition of mental health coordinators at qualifying care centers. The task force will also collect best practices and disseminate them among all care centers.
“It will take time for care teams to integrate these guidelines into their practice. It is very important that centers have the resources in place for treatment and referrals before offering screening” said Paula Lomas, director of clinical communications at the CF Foundation.
The guidelines are available on the website of Thorax, an international journal of respiratory medicine, and include an implementation manual for care centers.
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