Tips To Transition From Pediatric to Adult Care 5

Transitioning from pediatric to adult pulmonary hypertension care can bring new questions and challenges for young adults with PH and their families. “It’s totally natural to have a hard time letting go,” says Anna Brown, D.N.P., CPNP, of Vanderbilt University about changing care.

Brown shared transition tips at PHA 2022 International PH Conference and Scientific Sessions. Her session

“The Gray Area: Navigating from Pediatric to Adult Care,” also featured tips from Meghan Cirulis, M.D., of Intermountain Healthcare, and parent and caregiver Jody Petry.

1 Prepare early for the transition. It can be difficult for families to transition from the pediatric world, Brown says. There’s not a hard cutoff age, but the transition to adult care typically occurs between 18 to 22 years old. Speak with your provider about the best time to start your child’s care transition.

An important step to prepare your child is to give them ownership of their disease and medications, Dr. Cirulis says. When the child is about 13, slowly shift each clinic visit to the child to help them gain ownership, Brown recommends. Your child’s care team can do this by meeting one-on-one with the child before meeting together as a family. In the one-on-one, the care team should ask the child how they’re feeling and about their medications. You also can help the transition by giving your child more responsibility in managing medications and changing their central line.

2 Meet with your adult care team prior to transition. Have open dialogue and ask questions when you and your child first meet your adult team to make sure you’re on the same page about care. Once a young adult starts an adult PH program, some doctors will speak directly to the child and refuse to talk to the parents, Brown says. Schedule a routine visit with the adult care team to meet everyone in case your child has an emergency or needs hospitalization. If your child is 23 or older, the children’s hospital could refuse to admit them, Brown says.

3 Discuss milestones. When transitioning care, pediatric and adult physicians ideally will share a patient’s history and journey. Although your new care team can look at records, it’s helpful to have an organized synopsis of the child’s medical records in a binder or booklet, Dr. Cirulis says. It’s also important to discuss the milestones of your child’s PH journey with your child so they understand why decisions were made for their care and treatment. That will help them make their own care decisions in the future, such as those about treatments that have and haven’t worked.

4 Be transparent with your child. It’s hard to be a teenager and manage a chronic disease at the same time. As your child grows older, tough discussions, such as those about birth control and pregnancy, can come up. It’s easier on the child if parents are transparent from the beginning, Brown says.

She recommends having conversations when your child is young, then have those conversations again when they’re older. Speaking to your child isn’t going to change the disease but it’s going to change your relationship with your child in a good way, Brown says.

5 Discuss future postpediatric care. Once your child turns 18, consider becoming your child’s power of attorney. Jody is her daughter’s power of attorney in case she becomes incapable of making decisions. Her daughter knows her mom’s power of attorney is only in case of an emergency.

Power of attorney is different than guardianship, Dr. Cirulis says. Guardianship gives parents full control of the child’s care after they turn 18. A medical power of attorney allows parents to make medical decisions if the child can't.

For additional resources, view PHA’s Transitioning From Pediatric to Adult Care guide.