As you get older, you will be ready to learn new things and take on more responsibilities. We have broken down each of these times into six stages. We have provided an overview of what to expect during each stage.
We have also included a check list to help you learn more about CF. There are many skills to learn, and knowing which ones you need to focus on can help you to take charge of your life and your care.
Stage 1 Ages 8-10
The CF team begins to ask you (instead of your parents) questions about your health, medication and therapies. We help you start to understand how your lungs work and how your body uses the good food you eat to grow and feel strong. This means we help you to understand what is normal for your body when you are healthy. This will help you to learn more about CF and start to know why you take medication and do airway clearance.
Checklist:
- Explain what it means to have CF
- Understand why some people have CF and others do not
- Begin to learn how your lungs work
- Understand why airway clearance is necessary
- Begin to learn how your body uses good
- Help your parents remember your enzymes
- Understand why salt and fluids are important when exercising
- Name your medications and simple reasons for taking them (can use slang names)
Stage 2 Ages 10-12
We will continue to ask you questions about your health and medications. Try to answer the questions about your health without help from your parents. We will also continue to help you understand your respiratory and digestive baseline. We can help you to see when there is a change in this.
Checklist:
- Explain what it means to have CF
- Continue to learn how your lungs work
- Remembers to do your airway clearance on your own (most of the time)
- Continue to learn how your body uses food
- Remember to take more salt and fluids when exercising
- Name your medications using their proper names and reasons for taking them
Stage 3 Age 13
Starting at age 13, at one clinic visit during the year we will ask you to complete the clinic patient report will allow us to see what knowledge you have of your disease and health and what else we need to teach you. These reports will continue until you get to the adult clinic. We will also start discussing having clinic visits with you alone for the first half and then having your parents join in for the last half. This will help you become more independent and to build confidence that you are able to take care of yourself.
Checklist:
- Understand respiratory baseline and changes that may occur
- Independent airway clearance
- Understand digestive baseline and changes that may occur
- Remain independent with enzymes and all other medications
- List medications, that amount and times you take them
- Answer questions independently in clinic
- Understand why you come to clinic every 3 or 4 months
- Begin to understand the test that we do each year and why
Stage 4 Ages 14-15
If you and your parents are in agreement, the CF team will start to see you alone for the first half of the clinic visit. You should be completing the clinic patient report and review by yourself now. We get your parents to join in for the last half. This will allow you to build trust with the CF team, as well as with your parents. As you start to take an active role in the clinic visits, it helps you to be a part of the decision making process.
Checklist:
- Remain independent with airway clearance
- Remain independent with enzymes and all other medications
- Continue to list medications and doses
- Independent clinic visits
- Continue to understand the tests that we do each year and why
- Make choices about friends, drinking, and smoking that keep you healthy
Stage 5 Ages 16-17
This is when you (instead of your parents) begin to talk directly with the CF clinic staff over the phone when there are concerns with your health. We will talk about plans after you finish high school and how job and career choices may impact you and your health. We will talk about when to transition to the adult CF team. You and your family will have an opportunity to meet with the Nurse case manager from the adult team during your last two paediatric clinic visits. This will give you time to have your questions answered and give you a face to recognize at your first adult visit.
Checklist:
- Remain independent with airway clearance
- Remain independent with enzymes and all other medications
- Continue to list medications and doses
- Continue independent clinic visits
- Continue to understand the tests that we do each year and why
- Continue to make choices about work, friends, drinking and smoking that keep you healthy
- Being to monitor medication and supplies
- Call in for refills on medications
- Call CF centre and speak directly with staff if there are changes in your health
Stage 6 Age 18
At this point you will have had or be having your last paediatric visit. You will be given information at this visit about the adult clinic and all of the necessary appointments you must attend prior to it. We expect that at this point you will be calling the CF clinic independently if there are changes in your health. You manage your own medications and call for refills when needed. We will talk to you about how school, work, and lifestyle choices may impact your health.
Checklist:
- Remain independent with airway clearance
- Remain independent with all medications
- Continue to list medications and doses
- Continue independent clinic visits
- Continue to understand the tests that we do each year and why
- Continue to make choices about work, friends, drinking and smoking that keep you healthy
- Monitor medication and supplies, call pharmacy when refills are needed
- Call the CF clinic directly and speak to staff when there are changes in your health
- Secure financial coverage or insurance
