Below are frequently asked questions (FAQs) that you may have about transitioning to adult care with Turner Syndrome. These questions and answers are meant to be used as general information to help you learn more about the process of transitioning care.
Why is it important to transition from pediatric to adult care?
As girls with TS become older, doctor visits may become less frequent but not any less important. Without a good transition into adult care, girls do not follow up or get any age-appropriate screenings which leads to less than optimal health outcomes in the future. The process of transitioning care is an ideal time to promote independent self-care knowledge and behaviors that will create better lifestyle habits going into adulthood.
At what age should my daughter transition from pediatric care to adult care?
The transition to adult care should happen at the completion of puberty, around 18 years of age. The process of transition may take 2-3 years and the age of completing puberty may be different for some. To find out more about transition, click here.
As a parent, how could I help my daughter become more independent about her health?
Ultimately, your daughter won’t learn how to become more independent unless she observes and practices on her own. You may be used to scheduling appointments, doing all the talking at appointments, keeping track of medication, etc. but as your daughter gets older you must take a step back and let her begin to have the freedom to do such things. A young adult won’t become completely knowledgeable and independent as soon as she turns 18; like many other things it is a process. For the best possible outcomes, work collaboratively with your child and your health care provider during the process of transition.
What are some tips to make the transition process run more smoothly?
- Listen to how your daughter describes her health needs. This will be your starting point as to what areas your daughter needs help with.
- Have your daughter reflect on her health or health behaviors, changes she experiences, or how she feels. Encourage her to do this to create more self-awareness and recognition of her health.
- Have a debriefing session with your daughter after an appointment with a physician. Ask her questions such as: Did you understand everything that was discussed? Do you have any further questions? Did the appointment go the way you thought it would?
- Make a calendar or any organized space with important information such as making an appointment, refill a prescription, types of doctors along with their names and phone numbers, etc.
What are the changes my daughter will face while transitioning between pediatric and adult care?
Pediatric care is family-focused. Most of the time, one or both parents will come to the visit, parents do the talking and listening, and parents explain to their child what the doctor said during the appointment. Parents also arrange any follow-up appointments, obtain any medication, handle insurance, and more. In adult care settings, no one usually goes with the individual, they are seen alone. They must make appointments themselves, show necessary documentation at the time of appointment, participate in the appointment by listening and asking questions by themselves, make decisions about treatment by themselves, and much more. This can become a problem for those who do not get any practice trying to be more independent before they must do so own their own.
Find more FAQs about Turner Syndrome here.