Growing Up (As a Patient)

For people who find themselves on the receiving end of a diagnosis – a chronic condition, or cancer, or a rare disease – during childhood, the transition from “kid” to “adult” can include making transitions from pediatric-wing medical specialists to adult-medicine specialists for their particular condition.

This transition from child to adult can kick off while the young patient is still a minor, given that states can allow people under 18 (minors) to block access to their medical records once they reach 12 to 17 years of age – it varies state to state, with federal law (HIPAA) taking precedence if state law is silent on minors’ ability to block access to their records by their parents. A good overview on federal law side of this is in an article on VeryWellHealth, HIPAA Guide for Parents and Patients.

In this early transition-before-the-full-transition phase, a kid’s relationship with their parent(s) will be a core driver of whether a partnership between parent and child is central to that child’s care journey. Also, intellectual capacity of the kid/patient is a factor, one which will likely be well established prior to that kid reaching adolescence.

OK, that’s a basic scene-set for arriving at the “I’m 18, now what?” decision tree. As a freshly 18-year-old person, you won’t be expected to just shift immediately to a different set of clinical folks – you’ll get help from your pediatric clinical team in transitioning into a new care framework under adult medicine.

The Society for Adolescent Health and Medicine calls this transition phase “the purposeful, planned movement from adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” In an article in JAMA Pediatrics, the process is outlined this way:

• Time the transition by opening discussions about what it will mean with both the patient and their family, starting around the time the patient turns 12
• Get everyone on the care team involved: patient and parents, obviously, but also nursing, care coordinators, social workers, case managers, transportation services, everyone participating in the patient’s care
• Parents: ask your kid’s pediatricians when they typically kick off the transition discussion, and ask other pediatricians about their transition process, too; work with your kid and the pediatric team on a goals list for the transition itself, and work that list as the transition proceeds
• Patients: work with your parents and your clinical team on learning how to be a equipped, enabled, empowered patient – what resources do you need, what peer support communities would they recommend, how to figure out health insurance coverage, how to manage your care plan, along with who to ask for help in those areas

Often, turning 18 means heading off to college – even in a pandemic, for some – and finding out what resources are available in your college’s town or city will be a critical step in that transition. Work with your clinical team on identifying the right medical staff for your “college care team,” since relying on the student health center is a very your-mileage-may-vary exercise. I speak from long-ago experience, but the Washington Post says things haven’t changed much, and the pandemic has revealed all kinds of gaps there.

Be proactive – as a kid/patient, and as a parent – to ensure you prepare for this big transition, and move into adulthood with a plan for your ongoing medical needs in place. Live life to your fullest capability – it’s the only one we’ve got, so let’s live well, shall we?