How to Transition from Pediatric to Adult Care with Loeys-Dietz Syndrome

These medical, emotional, and adolescent challenges are especially significant for disadvantaged communities already experiencing difficulties related to living in remote areas or to their education, culture, or economic status.

Recommendations for transitioning from pediatric to adult care

To improve the transition experience and outcome, experts recommend:

• Education. For young adults, families, and caregivers, education includes learning about the transition process, the potential shift in familial roles and responsibilities, the adult healthcare system, and, for youth, learning more about their condition and management. For medical teams, education on complex conditions like Loeys-Dietz syndrome helps to highlight patient needs and result in a smooth and safe transition. While pediatric and adult care providers may have transitioning patients, they may not have extensive experience or training in transition. In fact, according to the Canadian Paediatric Society, there is a need across Canada for new educational programs to increase the medical system’s ability to care for transitioning youth.
• Selecting a transition coordinator. The coordinator is the primary medical professional responsible for preparing, coordinating, and maintaining communication throughout the transition process. They may be the youth’s primary care provider or a transition coordinator employed by the youth’s medical centre.
• Creating an individualized plan and starting early. Start the transition conversation early and revisit frequently to decide when to begin. Some experts recommend starting the transition process at 12 years of age. Create an individualized plan based on the youth’s medical needs, abilities, and goals for management and health literacy. A tailored plan is important as Loeys-Dietz syndrome can affect each individual differently. For feedback on the plan, ask the young adult and their specialists, family, and caregiver(s).
• Having an incremental and flexible transition to help make the process emotionally easier. An incremental transition includes a slow increase in in youth responsibility and privacy, shift in familial roles, and change to an adult medical team. A flexible transition means choosing a transition start and end based on the adolescent’s development and age. Flexibility is important as adolescents will have different levels of self-awareness and development and different abilities to manage their health care and life responsibilities. To use incremental changes and flexibility, providers need flexible models for sharing patient care, communicating, and receiving funding and payment.
• Selecting adult providers who are knowledgeable or willing to actively learn about Loeys-Dietz syndrome. Children with LDS are typically followed by a primary care provider (family doctor, pediatrician, nurse practitioner, or other) and several pediatric specialists. After the transition to adult services, young adults are seen by adult specialists and a primary care provider who may be new or the same as before. It is important for all members of the adult medical team to be familiar with or willing to actively learn about LDS symptoms, treatment, and management. To find knowledgeable providers in Canada, click here. And, to learn more about LDS, visit our website. If your child’s transition involves a change in primary care professional and the new one will be a family doctor, it is best to get on a waiting list early and for the geography where your child will be receiving services. Your current provider may recommend getting on a list when your child turns 16, or sooner or later depending on physician availability and waiting time in your area.
• Transferring the youth to adult care while their health is stable. Transfer is an event during the transition process when the primary professional responsible for a youth’s care changes from a child to adult provider. For both families and medical teams, the easiest time for transfer is during a period of stable health. Policies within the medical system can help foster transfer based on health status, rather than age. Examples of these policies include extending the age at which adolescents are required to transfer and at which pediatricians receive funding and payment, as well as providing more resources to clinics caring for medically complex youth who may benefit from transferring at an older age.
• Having an orientation and structured initial appointment at the adult health centre. Orientation helps to welcome new young adults, show them around, and inform them of the available health services. During the first appointment with the youth’s adult primary care provider, important topics to cover include: medical history, emergency care plan, privacy and consent, preferred methods of communication, health literacy, decision-making roles, and general, non-medical information about the youth.
• Working together with an emphasis on multidisciplinary care. Ongoing collaboration and communication are necessary between the pediatric and adult medical teams, transition coordinator, youth, family, and caregiver(s). This includes pre-transfer involvement of the adult primary care provider and specialists as well as post-transfer support from the pediatric primary medical professional and specialists. Collaboration makes it easier to maintain continuity of care, increase trust in a new, adult team, foster education, and produce a safer and smoother transition experience for the youth and family. Collaboration is especially important for people with Loeys-Dietz syndrome as it can cause a wide range of symptoms throughout the body and is best managed with lifelong, coordinated, and multidisciplinary care.

While the above recommendations are an excellent guide, each individual with Loeys-Dietz syndrome is unique and youth and their families are in the best position to know what is right for them. We suggest talking with your medical professional(s) about these tips, your thoughts, and their advice in order to plan and create a transition that best suits your child and family.

If you have further questions or concerns, please contact our Loeys-Dietz syndrome helpline at 1-888-LDS-FCAN or info@loeysdietzcanada.org.