Transitioning from Pediatric CF Care to Adult CF Care

Moving from pediatric CF to adult CF medical care is an essential transition for young adults living with cystic fibrosis (CF). This transition period is a crucial and significant step in maintaining stable health well into adulthood. Most individuals with CF transition from pediatric CF to adult CF care between the ages of 17 and 21. If you have CF, then you may feel sad or frightened to have to leave a care center and medical team that has become very dear to you. However, as an adult with CF, you will require different specialized care. More important, you need not worry as the transition should not happen too quickly, but rather it should be taken one step at a time. So how will your transition begin and what will it entail?

Pediatric CF Care vs Adult CF Care

First and foremost, it is important that you understand the difference between pediatric CF care and adult CF care. In pediatric CF care, your CF team works closely with both you and your parents. Your parents are taught how to care for you and how to manage your daily treatments. The relationship that you have with your CF team during these teenage years is more of a parental one, as they make the decisions for you based on your individual needs. Once you begin to mature, you are encouraged to take part in the decision-making process. This process then continues throughout the transition into adult care. In adult CF care, your CF team works directly with you and the relationship is seen as more of a partnership. They ensure that you receive the best treatment, all the while encouraging you to ask questions and become more independent in your own care and lifestyle. Your care team will still include a doctor, nurse, social worker, dietician, respiratory therapist, and other specialists you may need. The only real difference is that these specialists provide necessary support and guidance for adults living with CF. You can feel free to discuss with them any adult issues such as school plans, sexuality, career path, marriage, and more. They will work directly with you, although should you choose to include family members as a part of your support group, you may feel free to do so. Your family’s role during this transition is more from a supportive standpoint. Their views and opinions may be taken into consideration, but ultimately, you make your own decisions about your well-being and treatment in consultation with your CF care team.

The transition from a teenager to an adult

Shortly after your 12th birthday, your parents probably received a letter introducing you and them to the concept of transition. At this time, you were just entering your teenage years. Over the next few years as you grew older, you likely began to take on more and more responsibility for your health – such as taking your medications and following healthy lifestyle choices. By your 19th birthday, you will have been introduced to your adult CF care team.

Becoming an adult means becoming more independent and being self-aware. Having CF does not mean that you cannot take on responsibility for your own well-being. It simply means that by the time you move to adult care, you should be able to perform CF-related tasks and responsibilities that your family once helped you with. For example, airway clearance techniques provide more freedom with treatment and by seeking assistance from your CF respiratory therapist; you can find a technique that is suitable to your needs.

The precise age at which you assume an active role as an adult tends to vary from individual to individual. It is reflected on your social, physiological and emotional maturity. In order to determine if you are truly ready to take control of your own health, there are a couple of questions that you should consider asking yourself. These questions can be seen as a sort of assessment to review the different areas in your life and find out if you have any questions or concerns on a particular topic.

• Am I fully aware of what Cystic Fibrosis is?
• Can I accurately describe the symptoms of Cystic Fibrosis?
• Can I describe my daily care routine?
• Can I schedule my own doctor’s appointments?
• Am I able to establish specific self-management goals during my doctor’s appointment?
• Can I make decisions on my own?
• Do I know the names of all the medications I am taking?
• Do I know how my medications help me and at the exact times that I should take each of them?
• Am I able to refill my prescriptions?
• Do I know the warning signs of CF that indicate I should call my doctor?
• Do I know how enzymes work?
• Am I aware that Cystic Fibrosis affects fertility?
• Do I understand what genetic counseling is?
• Do I have family and friends that I can count on in times of need?
• Do I know when to ask for professional help?
• Do I fully comprehend the risks and benefits associated with my health?
• Am I able to live by myself?
• Am I getting enough sleep?
• Do I know what foods to eat and what beverages to drink in order to stay healthy?
• Do I understand the negative effects of smoking, drinking alcohol, and using drugs?
• Do I know all the medical examinations that have been performed on me?
• Do I understand why I need to undergo regular medical examinations?
• Do I have plans for higher education and / or employment?
• Do I know how to look for and apply for a job?
• Do I understand my current insurance coverage?
• Do I have a positive outlook on life?

Once you are able to answer all these questions and to the best of your ability, consider reviewing them with a close family member or someone on your CF team. All the very least, look over them and give them some thought, as they can serve for reference.

The goal of transition from a teenager to a young adult is to maximize your potential, become engaged in improving your health, and increase your overall quality of life. You can be assured that as you move into the adult world, there will be time to discuss matters such as college plans, employment, social life, parenthood, self-care strategies, and medical concerns related to CF with your adult CF care team. However, even an anticipated change can cause stress and uneasiness. What you should realize is that this transition period should not be seen as a scary time. It should be seen as an opportunity to prepare for much needed change, for both yourself and those around you. Your new CF care team will be there for you to provide you with any support that you may need, but they will also give you space to become more liable for your own care. After all, a successful transition promotes freedom and growth. It can be a challenging and dynamic process, but taking responsibility into your own hands allows you to explore different options. You have the chance to become independent and empowered – take it.