On February 18, 2020, Marcy White sat down with The Hospital for Sick Children to discuss the care plan for her then 17-year-old son Jacob, who lives with a severe neurodegenerative disease.
Understanding the challenges in transition to adult care
Jacob, who is wheelchair-bound and uses a communication device, lives with Pelizaeus-Merzbacher disease (PMD), a rare and progressive neurological disease that impacts motor skills, coordination and cognitive abilities. Symptoms appear in the first year of life and usually start with seizures, abnormal eye movements and loud breathing. Presently, there is no cure for the disease and research in this space has yet to yield any promising results.
In Canada, the age at which provinces and territories require the transition of pediatric care to adult services varies, but typically falls between the ages of 16 to 19 or when someone is legally considered an adult. However, the Canadian Pediatric Society is calling for more flexible age cut-offs to accommodate patient differences and recommends that those who are identified as high risk due to a medical or psychosocial complexity be provided with more extensive multidisciplinary transition support.
Another report suggests that youth with medical complexities are experiencing poor health outcomes as they transition to adult care, and this concerning pattern appears to be evident across various conditions, including diabetes, cystic fibrosis, congenital heart disease, and among those who have undergone organ transplants. The report also suggests that a successful transition process should be continuous, coordinated and personalized to meet the unique needs of each patient, and that primary care providers play a crucial role in ensuring the seamless execution of the transition.
Families losing “invaluable support services” in transition to adult care
Training, knowledge and exposure are missing pieces in transition to adult care
Lin Li, a registered pediatric nurse and a PhD student at McMaster University has devoted the last five years of her academic journey to delving into the intricacies of the medical transition process for individuals with debilitating conditions. Through her research, she uncovered a myriad of challenges experienced by patients and their families.
Adult care is unprepared for youth with medical complexities
The impact of transition to adult care on families and caregivers
Research shows that parents and caregivers of medically fragile children often experience depression, anxiety, sleep disturbances, financial challenges, as well as social isolation. The burden of chronic stress also heightens their odds of premature death.
Liv Mendelsohn, executive director at the Canadian Centre for Caregiving Excellence , described just how difficult and disorienting the transition process can feel for patients and their caregivers.