The CF care team approach means that health care professionals work together in partnership with you to provide comprehensive and high-quality care for you or your child.
New guidance for CF care centers discusses all the health care professionals who may be involved in the care of a person with CF:
- The core CF team provides routine, specialized care for people with CF. Core CF team members may include program directors, doctors or advanced practice providers, dietitians, genetic counselors, mental health coordinators, nurses, pharmacists, respiratory therapists, and social workers.
- Essential partners have expertise in CF and work closely with the core CF team to manage common CF-related complications. They may be part of the core CF team at some care centers. Examples of essential partners include physical therapists, primary care doctors, transplant doctors, and ear, nose, and throat doctors. Essential partners may also include specialists in hormones, the digestive system, the liver, mental health, palliative care, and reproductive health.
- Trained and trusted consultants help manage less common complications that may or may not be related to CF. Examples include specialists in allergy/immunology, heart disease, blood disorders, cancer, eye disorders, pain management, rehabilitation, rheumatology, sleep medicine, and urology.
- Program support staff assist the core CF team. Examples include newborn screening technicians, Registry coordinators, research liaisons, and sweat test technicians.
Here we will review the core CF team members and some of the other health care professionals you may meet. But first, let's talk about the most important member of the care team.
The Person Living with CF
You are an important member of your or your child's care team. While you depend on your care team for essential guidance on your medical care, you are the expert in the daily management of your health.
There is a lot that you and your care team can do together to help you maintain your health. As an active member on your own care team, you can help make sure that your treatment plan and comprehensive care reflects your personal needs and goals so that you can live a longer and healthier life.
Your CF Nurse
CF nurses specialize in CF care and fill a variety of nursing roles in the CF care center setting. At many CF care centers, your CF nurse may also be the program or care center coordinator. The coordinator works with all members on the CF care team to ensure that the CF program runs smoothly, which can include participating in quality improvement (QI) initiatives and making sure that best practice care guidelines are properly implemented at your CF care center.
Your CF nurse is your primary contact. He or she is there to address your concerns, answer questions, or direct you to the right CF care team member when discussing a specific part of your treatment plan. CF nurses also have the primary responsibility of providing CF education at initial diagnosis and throughout life.
If you're not sure who the correct person is to discuss a concern or answer a particular question, start with your CF nurse.
At a glance, your CF nurse:
- Helps coordinate and carry out medical care plans.
- Walks you through your daily treatment plan and any changes.
- Helps with communication between you and the other members of your CF care team.
- Alerts your CF care team about psychological, social, and financial concerns you or your family may be experiencing.
- Provides you with health information or directs you to resources to help you manage your disease.
- Helps you educate family members, friends, the public, and other health care professionals like your primary care doctor or other non-CF specialists on ways to support your health with CF.
The nurses at your care center may include a nurse practitioner (NP) or a clinical nurse specialist (CNS). Your team may also include a physician assistant (PA), who like an NP, is trained to perform physical exams and prescribe medications and treatments.
Your CF Doctor
The medical doctor at your care center is an expert in CF care and is often the director for the CF program. He or she is likely trained as a pulmonologist to diagnose and treat lung diseases. Your doctor will work with you, your family, and the other members of your care team to develop an individualized CF medical plan. This means the plan is based on your medical test results, changes to your health status, new available therapies, and your personal goals.
CF is a complex disease that affects many parts of the body differently as you age into adulthood. In order to provide you with comprehensive care based on current medical best practices, your CF doctor is responsible for staying on top of the latest CF care guidelines, trends in patient outcomes, and new medications and therapies. He or she also collaborates with other health care professionals, including your primary care doctor, so that your overall health is at its best.
Many CF doctors also participate in quality improvement (QI) initiatives to learn about ways to improve your care or teach others how to deliver quality care for people with CF. Some doctors may also conduct research through clinical trials to help bring about new CF treatments and therapies.
At a glance, your CF doctor:
- Works with you and other care team members to develop a medical plan that meets your individual needs.
- Applies clinical best practices by staying on top of CF care guidelines along with new medications and therapies.
- Assesses the details of your care to inform changes to your care plan in consultation with you, other health care professionals, and your primary care doctor.
- Participates in QI initiatives and educates others on CF care.
- Conducts clinical trials to bring about new CF treatments and therapies for CF.
Your CF Dietitian
Registered dietitians are trained to assess your daily food intake, growth, and your overall nutritional status. They help you work toward your optimal body weight so that you have the calories and nutrients needed to fight off lung infections and maintain lung function.
With your personal goals and lifestyle in mind, your CF dietitian can teach you and your family how to adjust your eating habits, recommend dietary supplements and vitamins, and adjust your enzyme intake. They may also suggest tube feeding as a healthy option to help you meet your nutritional goals if you can't get what you need from eating and drinking alone.
Your CF dietitian can also help you manage CF-related complications such as CF-related diabetes (CFRD) and bone diseases like osteoporosis.
At a glance, your CF dietitian:
- Helps you achieve or maintain a healthy weight.
- Develops a nutritional plan that meets your health needs.
- Recommends fat-soluble vitamins, pancreatic enzymes, and additional dietary supplements.
- Works with you to meet your nutritional goals through tube feeding.
- Helps you manage CFRD and bone diseases like osteoporosis.
Your CF Social Worker
Maintaining your health by taking your medications and doing your therapies can be challenging and affect how you live your life. You may feel overwhelmed trying to keep up with school, work, or your relationships. This is where the social worker on your CF care team can help.
Social workers can help you navigate your health insurance coverage, make tough decisions about school, or think about the next steps in your career. They can also refer you to specialists so you can get the help you need.
At a glance, your CF social worker:
- Assesses and counsels you on the emotional, social, and financial aspects of living with CF.
- Teaches you ways to cope with the stress of your disease and how it impacts family and friends.
- Helps you prepare for transitions, such as moving to an adult CF program, going to school and requesting accommodations, or starting a career.
- Helps you or your family navigate your health insurance coverage or find financial assistance.
Your social worker may refer you to CF Foundation Compass for additional help. Compass is a free service that can help you with insurance, financial and legal questions, and other issues. Dedicated Compass case managers can help coordinate benefits or provide information about benefits offered under your plans. Contact Compass at 844-COMPASS (844-266-7277) or compass@cff.org.
Your Mental Health Coordinator
A mental health coordinator is a nurse, licensed clinical social worker, or psychologist. They work in the care center. A mental health coordinator does yearly screening for anxiety and depression. Mental health coordinators have training to coordinate treatments and to give behavioral interventions. They may also refer you to other mental health professionals. The mental health coordinator educates about mental health care in CF.
Your CF Respiratory Therapist
During your care center visits, the CF respiratory therapist helps you do pulmonary function tests (PFTs) to measure the air flow and volume in your lungs. This team member also helps you with your pulmonary therapies, which are designed to clear mucus (sputum) out of your lungs, control bacteria, and reduce the inflammation of your airways. These therapies involve airway clearance techniques (ACTs) and inhaled or nebulized medications.
Your CF respiratory therapist can teach you and your family how to properly take your inhaled medications. They can also show you how to use and care for the medical equipment used to deliver these medications into your lungs. This equipment may include nebulizers, air compressors, and oxygen systems. With their help, you will learn how to clean and maintain this equipment while at home or even when you're travelling.
In some care centers, a physical therapist may also help with respiratory tests and therapies.
At a glance, your CF respiratory therapist or physical therapist:
- Does your PFTs during care center visits.
- Teaches you and your family how to do airway clearance and how to take your inhaled medications.
- Shows you how to use and take care of equipment like nebulizers, air compressors, and oxygen systems.
Your CF Physical Therapist
Some CF care teams include a physical therapist. He or she is trained to design an exercise or physical activity program to fit into your daily routine. In some CF care centers, the physical therapist also helps with respiratory tests and therapies. Airway clearance should be done in addition to your fitness program.
Regular exercise helps your overall health because it promotes heart and muscle function, which builds strength and gives you energy to live an active life. Exercise is also important for people with CF because it can help improve your ability to cough mucus out of your airways, which is critical for better lung function.
Your physical therapist will work with you to design an exercise or fitness program that is based on your age and health status. The program can include sports or other physical activities that you enjoy doing in order to maintain lung function and overall physical fitness.
“My physical therapist challenged me, and when I experienced what oxygen was able to help me accomplish, I immediately began to see it as a tool for my benefit as opposed to something that should define my limitations. A switch was flipped in my mind and that sudden realization — that increasing my oxygen usage could help discover my true physical potential — was a euphoric sensation.” Brian Armstrong, adult with CF, from the CF Community Blog
You can also work with your CF physical therapist on ways to maintain good posture and build or regain muscle strength and endurance. Physical therapists use various techniques to improve your mobility and lung function. They can also help you address issues with pelvic floor muscles, such as urinary incontinence.
At a glance, your CF physical therapist:
- Works with you to design a fitness program for your daily routine.
- Can help you find ways to maintain a good posture and build or regain muscle strength and endurance.
- May also help you with airway clearance.
Your CF Pharmacist
If your care team includes a CF pharmacist, he or she will help you learn about the benefits and potential side effects of your CF medications, including how to take your medication at home and while you're in the hospital.
CF pharmacists work with you to make sure the medications that you've been prescribed do not react with each other in a way that can harm you. CF pharmacists also check dosages so you get the right amount of medication at the right time in order to be the most effective.
One of the goals I have as part of the care team is to help patients understand why we may add an additional medication when they are already juggling their current therapies with their day-to-day lives.” Wendy Bullington, CF pharmacist, from the CF Community Blog
Your CF Research Coordinator
Your team may have a CF research coordinator, who can answer questions about a clinical trial and help determine if you are eligible to enroll or participate in a specific trial. Clinical trials usually take place at a care center that is also a research site.
Your CF Genetic Counselor
Your team may have a genetic counselor, who is a health care professional trained in genetics. A discussion with a genetic counselor can help you understand inherited conditions and how an inherited disease is passed on from parents to children. For example, families with a history of CF may learn their risk of having a child with CF through a genetic counselor. Genetic counselors can also help you with questions about your or your child's CFTR mutation. And they can help with questions about clinical trials for genetic therapies.
Other Health Care Professionals
Additional members of your CF care team may include physician specialists, also called subspecialists, and other health care professionals. They have extensive training and practice in their area of expertise.
Here are a few examples of physician specialists and other professionals who may be involved with CF care:
Psychologist
Your CF social worker or mental health coordinator may refer you to a mental health specialist such as a psychologist. Psychologists have expertise in identifying and treating problems with behavior, mental health conditions such as depression or anxiety, learning disabilities, and social interactions with family, friends, peers or co-workers. They may also help you overcome problems with balancing treatments and other aspects of your life by teaching you coping strategies.
Some CF care centers have psychologists working at the care center. The sessions you have with a psychologist may be brief consultations during regular CF care center visits or during CF hospitalizations. You may also be referred to other therapists or mental health specialists for ongoing support.
If you decide to see a therapist or mental health specialist, it is important to talk with your health insurance plan. Mental health treatments or psychiatrist visits are often covered under a special mental health "carve-out." This means that your claim for mental health services are processed and paid for by a different company than the company that pays for your medical services.
At a glance, a psychologist:
- Helps you emotionally adjust to your CF diagnosis or changes in your health.
- Helps with behavior management related to both general and CF-related issues.
- Assesses your cognitive, academic, and emotional well-being.
- Helps you overcome problems related to your feelings, stress, or ability to stick with your CF treatment plan.
Otolaryngologist (ENT)
An otolaryngologist (or "ENT" for ear, nose, and throat doctor) is a doctor who has special training in the diagnosis and treatment of disorders that affect the nose and sinuses. The same basic defect that affects the lining of the lungs can also affect the lining of the nose and sinuses in people with CF.
Gastroenterologist
A gastroenterologist is a doctor who has special training in the diagnosis and treatment of diseases of the digestive system. This includes problems with the esophagus, stomach, liver, and intestines, including colon cancer.
Endocrinologist
An endocrinologist is a doctor with special training in the diagnosis and treatment of cystic fibrosis-related diabetes (CFRD) and other hormonal diseases, including problems with thyroid hormone and growth hormone.
Child Life Specialist
Child life specialists are trained to help children and their families cope with medical conditions and all of the tests and treatments involved. A child life specialist helps children understand what is happening in a simple way according to their age and abilities. This helps children deal with their fears about illness, medical tests, and treatments.
At a glance, child life specialists:
- Plan activities and entertainment during care center visits and hospitalizations to distract children from the stress of the medical treatments and the care center or hospital environment.
- Teach skills for dealing with the stress of a chronic illness.
- Teach and direct medical play therapy to help children understand treatments and procedures.
- Provide a space in the care center and hospital that is free from medical procedures, to keep a space for children that feels normal and safe.
- Work with other team members to teach children about CF, its effects and its treatment.
Chaplain
Some hospitals have chaplains available. Chaplains can help you and your family with spiritual issues.
Health Care Professionals in Training
Your care team may include other doctors, medical students, and other health care professionals who are learning about CF and the best ways to treat people with CF. These health care professionals in training include:
- Medical students: Students who are training to become a doctor. Medical students are learning about diagnosing illnesses, caring for people, and evaluating and reporting a person's condition and progress to the attending physician.
- Residents: Doctors who are getting advanced training, such as in pediatrics or internal medicine. Residents have already finished medical school and received a medical degree.
- Fellows: Doctors who have finished medical school and residency and are getting specialty training. At CF care centers, fellows are often pediatricians or internal medicine doctors training to become pulmonologists. After years of special training, the fellow often goes to another CF care center to be a CF doctor.
Resources to share with non-CF health care professionals
Explaining CF to a doctor or other health care professional can be difficult. Share the two handouts below to help your non-CF healthcare providers better understand CF:
