Cystic fibrosis yearly review

What is the cystic fibrosis yearly review?

Cystic fibrosis is a disease which affects different parts of the body for example; the lungs, pancreas, liver and bowel.

The yearly review is a way of achieving the best care of a disease which is changing, progressive, and complex and ensuring that nothing is overlooked.

How is this done?

On the anniversary of your diagnosis, an appointment will be made at Sheffield Children’s Hospital Cystic Fibrosis Unit for you to have some tests. The tests include:

• A tummy ultrasound. A probe (bit like a large, thick pen) is moved over the tummy, which records the images and are displayed on a screen. This looks at your liver, pancreas and bowel. This is the same test that pregnant ladies get to see their baby inside them.
• A chest X-ray to check any lung damage.
• At 10 years old and above, you may get a bone scan. This takes pictures of how thick the bones are.
• Some blood tests to look at:
  • how your body copes with sugar
  • your white blood cells which are infection fighters
  • your red blood cells which carry oxygen around the body
  • your vitamin levels
  • your body’s immune system
  • any signs of infection
  • how well your liver and kidney are working
• A review by the cystic fibrosis physiotherapist. When you are old enough (aged 5 and over) a fitness test will be done to see how you are breathing when doing exercise.
• If you are old enough then you will have a blows test to see how much air you can breathe out. This will be done on the Cystic Fibrosis Unit until the age of 10. After the age of 10 a more in depth set of tests will be done in the Action Lab. These tests will take around 30 to 45 minutes.
• A growth and measurement.
• A review by the cystic fibrosis dietitian will be done.
• When you get to 10 years of age (on each Annual Review) you will undergo an oral glucose tolerance test (OGTT) to check how your body reacts to glucose, as cystic fibrosis can be linked to diabetes.

What happens next?

About 6 to 8 weeks after the test are done and all the results have been looked at, you will be asked to come back to the yearly review feedback clinic.

This is a clinic visit for you and gives the chance to talk about the results of the tests with a cystic fibrosis consultant.