• by Daniella Koren , August 10, 2016

Any change can be daunting. But for a pediatric patient with a rare disease who is faced with transitioning into adult care, it can be exponentially more intimidating. While parents have often painstakingly developed a support system over the years of managing their child’s care, transition programs that guide young adult patients are scarce. In fact, according to the National Survey of Children with Special Healthcare Needs, more than 50% of the parents reported that no one ever spoke to them about the upcoming need for their child to switch to adult care. 

To bridge this gap, healthcare professionals need to establish and communicate programs that are mindful of the unique medical needs of these patients and what support is necessary to make the process easier. 

Creating and implementing a transition program

Think of it as onboarding. The ultimate goal is to give older teens and young adults a sense of empowerment about managing the aspects of their own healthcare. And, of course, to smooth the transition while ensuring that the patient continues to receive the highest quality care possible.

To meet the challenge, the Cleveland Clinic has launched a pilot program entitled “On My Way.” A few highlights: 

• Pediatric caregivers assess transition readiness by conducting surveys at annual well check-ups beginning at age 16. 

• Pediatric caregivers provide all relevant medical information and records to the new physician in a neat and easy-to-review format. 

• Armed with their medical background package, the patient is equipped to manage their care and communicate effectively with their new caregiver. 

Transitioning the child with a rare disorder

Global Genes reports that there are “approximately 7,000 different types of rare diseases and disorders” affecting 30 million people in the U.S. (roughly 10% of the population). Eighty percent of these conditions are caused by genetic defects and approximately 50% of sufferers are children. 

Many of these diseases are childhood-onset, multi-system disorders that require lifelong, highly-specialized care and support. And with many of these children surviving (and thriving) into adulthood, the change from a family-centered approach can be arduous and uncertain.

Children with rare illnesses have spent a lot of time in physicians’ offices and hospitals, but they are also the ones whose parents have been by their side, holding their hand. When it’s time to let go, they must learn to become their own advocates. Healthcare marketers can play a part in this process by tailoring communications to young adult patients:

• Stress the need for patients, parents, and caregivers to discuss procedures and treatments, their purpose, possible outcomes, and why they are necessary.

• Advise teenagers who may be approaching the transition to be more actively involved in decision-making.

• Help children who are afflicted with rare illnesses connect with others who have similar conditions.

While there are initiatives underway, there is still a great need for additional support, including effective communication and cooperative efforts between parents and pediatric and adult caregivers. With the right assistance, many of the incredibly tough kids who have learned how to handle their condition will successfully manage their own care as adults. 

Illana Jaqueline, managing editor of the blog at the Global Genes Project, recounted her own successful transition while dealing with Postural Orthostastic Tachycardia Syndrome and Primary Immunodeficiency:

"When I was a kid, having a support team for my disease meant having a parent who would fight my doctors for the “unnecessary” x-ray, the “it won’t make a difference” blood test, and the walk-in, 5:59 PM doctor’s appointment.

"But as an adult with a rare disease, my world is much different.

"No longer do I need someone to hold my hand when I get an IV or fight on my behalf when I demand a new treatment plan. Thanks to my support team as a kid, I learned how to be an advocate for my own health (even if my supportive mother still fights alongside me!)."