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Starship rheumatology transition program

Young people with rheumatology conditions such as juvenile idiopathic arthritis (JIA) and Lupus (SLE) are better prepared to manage their condition in the long term if they are confident looking after their own health before they move to adult services. Planning early allows time for young people to develop their skills and confidence so that they can become more independent.

We start talking about transition when a young person is between 11 and 12 years old. At Starship, the move to adult services happens after the young person turns 15 years old.

Transition planning with a young person and their whānau starts at about 13 years of age. We do this in a separate transition appointment. At this appointment we check how confident the young person is with their own health care. We make a plan based on the understanding and skills they already have, which can be added to over time.

At about 14 years old, we suggest the young person starts spending some time at their appointments alone with their health care team. This helps the young person to build independence and confidence. It also recognises their right to talk privately with their healthcare team.

We talk with the young person about some of the issues they might face as they get older and how this could affect their health.

Before moving to adult services, we give the young person and their whānau information about the service. We talk with the adult health care team to make sure they are well prepared to take over the health care of the young person.

About adult rheumatology service

About rheumatology conditions

Download a PDF of the information for young people with rheumatology conditions

Having a rheumatology condition has some specific challenges, especially if you are taking medicines that affect your immune system. As you get older, there are some adult issues it is important to be aware of. Here is some information about potential risks and how to make the best decisions for your health.

What does being immunosuppressed mean?
Rheumatology conditions occur when parts of the immune system are overactive. The medications that are used help to ‘calm down’ and suppress the immune system. Although this helps to treat your condition, it makes you more vulnerable to infections. Your body also has to fight harder if you do develop an infection.

Smoking
Smoking tobacco is harmful to your health and introduces poisons to your body. Once you start, it can be addictive and difficult to quit. It affects your immune system, makes your medicines less effective and makes your condition more difficult to control. Smokers are more likely to develop infections, especially chest infections. If you are immunosuppressed this risk is even higher as your body is less able to fight infections. Let your team know if you’d like to quit smoking.

Sexually transmitted infection
Unprotected sex increases the risk of getting a sexually transmitted infection (STI). If you are immunosuppressed the risks are higher. Practicing safe sex by using a condom reduces these risks.

Pregnancy
Women with rheumatology conditions can have successful pregnancies and healthy babies. This is safer if your condition is well controlled when you fall pregnant and during your pregnancy. If you decide to become pregnant, let your rheumatologist know in advance. They may want to adjust your medication, which sometimes needs to be done slowly.

Some medicines in rheumatology can harm an unborn child—for this reason it is important to talk to your rheumatologist and check if you are on any of these. Unplanned pregnancy should be avoided and using another contraceptive (as well as condoms) will provide extra protection. When deciding which contraceptive to use, make sure you tell your doctor/family planner about your condition and medications as this may affect which option is best for you.

Alcohol
Alcohol is toxic and irritates the liver and stomach, especially in large amounts. This can affect the immune system. When you drink alcohol, especially large amounts all at once, it might affect how well your condition is controlled. Many medications used in rheumatology can also affect the liver. If you drink while on these medications, especially in large amounts, it can be dangerous.

Tattoos and Piercings
Tattoos and piercings are a potential infection risk. If you do decide to get a tattoo or piercing, make sure that you choose to go somewhere with a high standard of hygiene precautions. Don’t be afraid to ask if you are unsure. While the tattoo or piercing is new, make sure you keep the skin clean and see your GP if there is any sign of infection.

Medicines and Drugs
Always check with your doctor before starting any new medicine or treatment, as different medicines can affect each other. Make sure they know which medicines you are currently taking so they can check whether it is safe to prescribe. It is extremely unsafe to mix illegal drugs with prescription medicines and and/or alcohol.

To find out more…
Generally, it is a good idea to talk to someone you trust (e.g. your parents, GP, school nurse or counsellor) when making decisions about these issues. You can also talk to your rheumatology team. Remember that any information you share with a health professional will be kept confidential. The agencies listed below also have good information:

Resources for young people

 

Youth transition