Transitioning to adult care for teenagers with heart conditions

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Learn about the transition to adult health care for teenagers with heart conditions.

Key points

  • Children who turn 18 need to receive care from a cardiologist who specializes in care for adults with congenital heart disease.
  • Young adults with congenital heart disease need ongoing care even if they show no symptoms.
  • Ongoing care is important because people with congenital heart disease are at increased risk of complication and premature mortality, though individual risks vary.

This page explains how to ease your child's transition to adult care for congenital heart disease.

Who looks after your child when they turn 18?

When your child reaches the age of 18, they will need to receive care from a cardiologist who specializes in care for adults with congenital heart disease. Based on their diagnosis, some patients will be transitioned to an adult cardiologist rather than an adult congenital specialist. This decision should always be made by the paediatric cardiologist who has been caring for your child.

A smooth move into the adult health care system is a necessary step for any child with a chronic condition. The process should begin well before your child turns 18. Ideally, conversations about transition should start when the child is about 11 or 12.

The paediatric cardiologist will be able to refer you to the person best able to take over your child's care and what to expect later in life. This doctor will discuss life goals and needs with your child, as well as how often they need to have a check-up and tests, and any precautions they may need to take. Adult care focuses on meeting your child's physical and psychosocial needs.

Why is continued care as an adult so important?

Young adults with congenital heart disease need ongoing care, even if it's tempting to forget about the condition if there are no symptoms. A lot can be going on in the heart — a very complex organ — and the absence of symptoms is not a reliable indicator of cardiac function. The reality is that people with congenital heart disease are at increased risk of complication and premature mortality, though individual risks will vary.

A strong relationship with the adult cardiologist will be important for ensuring your child's long-term health and will provide the best chance for positive outcomes. It also ensures that the doctor can check on your child's progress, monitor them for any sign of recurring or other problems, and provide them with the latest information on his condition. The adult cardiologist and other members of the team can also help address the issues that come up as your child gets older, such as sexuality, career planning, and becoming a parent.

Is it hard to make the switch to an adult clinic?

Some children may find it quite hard to leave paediatric cardiology, since they may have spent a long time getting to know staff and trusting the professionals. The first visit to the adult cardiologist can also be a bit unnerving, since the cardiologist will be talking to your child about what lies ahead. The cardiologist will discuss issues that may be difficult to hear, depending on the severity of your child's condition, about your child's expected future health. This can be upsetting.

The first visit to the adult care clinic can be overwhelming and sometimes the news may seem discouraging. These young adults tend to develop an increased perception of risk. Some may react by avoiding clinic appointments. It's important to be aware, however, that attending clinic appointments is necessary to help maximize good health over the long term.

Preparing for the switch to adult care

The switch to adult care may take some time to get used to. This is the reason why paediatric cardiologists and other staff should make it a point to begin discussions about the switch to adult care as early as possible. This will serve to reinforce the need for, and benefits of, ongoing care.

You can also help by encouraging your child to gradually take over responsibility for their own care. This could include booking clinic visits, making a list of questions they wish to ask, and spending time alone with the cardiologist or other team members at each visit. This has been shown to make the overall transition more successful.

In addition, many adult clinics offer information nights on the transition in connection with paediatric hospitals. This is an excellent opportunity to meet some of the doctors and gather information.

What increases the odds of a smooth transition?

Research indicates that, unfortunately, a significant percentage of paediatric congenital heart disease patients do not transition smoothly to adult care. This is a serious problem, as these patients often face increased risks without appropriate knowledge and support.

The following factors are associated with a better transition to adult care:

  • being specifically recommended for follow-up at an adult congenital heart disease centre
  • older age at the last visit to the paediatric cardiologist
  • living close to an adult congenital heart disease centre
  • avoiding risky behaviour like excessive drinking or risky sexual behaviour
  • taking steps to prevent against infective endocarditis
  • being responsible for their own cardiac care

Studies have shown that children who have had a number of paediatric surgeries or who have other medical conditions are also more likely to transition well to adult care.

Last updated: January 15th 2010