Photo by sir lodi on Pexel

Remember when you turned 18 and you instantly knew how to juggle responsibilities, manage your time, and navigate bureaucracies without feeling overwhelmed or making any silly mistakes?

I don’t either. But that’s how the medical system often assumes adulthood works, with a clear division between healthcare for people over 18, and healthcare for people under 18.

While doctors have recognised this as a problem for ages, and the system is very slowly changing, moving between pediatric and adult services is still a huge adjustment for people turning 18.

This is especially true for endocrine care, which can involve complex conditions that look very different in kids and adults, and involve issues relating to sex, reproduction, gender and body development – topics that no one loves discussing with a doctor.

As Professor Margaret Zacharin AM, pediatric endocrinologist, researcher and educator puts it, “We have to understand that 18 to 25 year olds are not the same as 50 year olds.”

“They have different interests, different needs, different expectations – and these expectations and needs are not necessarily being met.”

“The real question that has not been solved is the success rate in transitioning patients and retaining them in adult care. The real issue is, how do you transfer these people into a new situation and retain their care?”

As up to 50% of young people in the care of a pediatric endocrinologist don’t end up connecting with an adult endocrinologist, patients, carers, pediatric doctors and adult doctors need to understand that this can be a delicate period that needs preparation and care.

Photo by patricia beliga on PexelPediatric vs adult endocrinology

Pediatric care emphasises continuity – seeing the same doctor, in the same place, on a predictable schedule. For most kids, the administration of finding a doctor, organising transport and time off, going to appointments, and arranging and paying for medication is done entirely by their carers, doctors, and the health system.

Adult care gives patients much more independence but also requires them to take over much of the administrative work. On the upside they’re given much more responsibility – but on the downside they have much more responsibility.

As the patient transfers from one service to another, this all happens in an unfamiliar setting with unfamiliar people, during one of the most dynamic times of their lives. As well as transferring from pediatric to adult endocrinology, they might also be starting university, travelling, moving out of home, employed in insecure work, partying, or experiencing bad mental health.

Emotionally, the transition can also be difficult. “[there are] those are sort of very simple, practical things. And then there’s a whole different area of the patient’s trust in the new provider” says Professor Zacharin, “[Patients] don’t like trying to explain the condition for the 150th time; they often don’t trust the new providers to understand the nature of their condition that they’ve carried throughout childhood and adolescence.”

Photo by d ng h ng phuc on PexelChallenges in the pediatric system

Transition of care is a complex problem in any type of medicine, but endocrinology has unique difficulties. Endocrine conditions can have different symptoms and require different treatments before and after puberty, and can affect sexual and reproductive health.

The goal of pediatric care is to build a solid trusting relationship over time. However, this long-term relationship can actually make things difficult when discussing things of an intimate nature. If you see your doctor as a family friend, you probably won’t feel comfortable telling them about this weird thing that happened when you had sex for the first time.

The same is true for the pediatricians themselves. Professor Zacharin observes that some pediatricians may feel uncomfortable discussing sexual matters – both due to their longstanding relationships with patients and because, as children’s doctors, they often lack expertise in contraception and sexual health.

When a doctor is visibly uneasy it can magnify a teenage patient’s anxiety, leaving the issue awkwardly unspoken or tiptoed around for years.

Pediatric endocrinologists are experts in kids’ hormones, but they might not be as familiar with how those same conditions affect adults, or even their own patients after they become adults.

Medical specialisation is great if you need special medicine, but it also means that busy doctors who work in one field might not be up-to-date with discoveries from other fields. For example, fertility treatments for adults with endocrine disorders have been progressing in leaps and bounds, but that news might not have filtered down to all pediatric endocrinologist yet.

Photo by cottonbro on PexelChallenges in the adult system

Similarly, endocrinologists who only treat adults might not know as much about how hormonal disorders affect children – especially children with differences of sexual development.

“There are very specific things about pediatric endocrine conditions with which adult practitioners are simply not familiar” says Professor Zacharin. “People don’t have the faintest idea about it. They don’t realise the traumas that have been experienced with all these sorts of things.”

They might also expect an unrealistic level of maturity from their patients. Because of this, Professor Zacharin notes, “the language that is used can be very different. The expectation of adult practitioners is that they’re dealing with adults. That’s not quite the case for 18 year olds.”

The same endocrine conditions can also look really different for children and adults, and adult endocrinologists often aren’t familiar with the pediatric version. Hypopituitarism, for example, is often more serious for children born with it than for adults who develop it later. While adults with hypopituitarism might have subtle symptoms, children have to contend with blood sugar crashes and rapid deterioration when they get sick.

As Professor Zacharin puts it, adult endocrinologists can “fail to understand that the young person [with hypopituitarism] isn’t necessarily able to look after themselves if they’re ill” and can get impatient with them. However, as Professor Zacharin notes, for these patients “it’s very difficult to recognise when you deteriorating when you’re sick and when you need extra steroid cover. And they often don’t present for care, or they present for care extremely late because they’ve been out partying with a friend or living by themselves in isolated circumstances. They’ve got no idea they’re getting sick until the point that they’re really quite shocked.”

Photo by katia damyan on PexelTips for the move from pediatric to adult endocrinology

This isn’t an obscure problem – as Professor Zacharin notes, there have been over 1000 academic papers written about the transition from pediatric to adult endocrinology.

Australia has taken steps to address the awkward timing of the transition, recognising that just because a person is 18 doesn’t mean they’re fully fledged. Pediatricians are now allowed to treat patients up to the age of 25, which helps to ease the transition. However, every silver lining has a cloud, and this change has led to even more strain on their workload.

For Professor Zacharin, the solution is education. “We need to educate people. We need to educate the pediatricians to know more about the problems that their children will have as they go into adulthood. We need to educate the adult people about pediatric conditions they know nothing about.”

Doctors should also repeat key information, provide written summaries, and ensure they communicate as clearly as possible to both patients and the new doctor.

But patients need to do some of the work too. Professor Zacharin suggests a good old-fashioned list.

Patients should “ask the doctor who has been looking after them, to enumerate simply in point form:

  • Each part of their condition
  • How it will evolve
  • How to address issues of drugs, alcohol, sexuality and fertility? Because that’s often those are probably the four biggest issues for adults, and number five: safety.
  • How to improve your life
  • Things you need to address with your new doctor.”

Importantly, remember that your new endocrinologist is there to help, and “try and create a conversation with them so that it is possible to discuss all of these issues. Realise that the adult doctor is not going to be judgemental about it, that they’re there to help.” If the new endocrinologist isn’t across everything, tell them to get in touch with your old pediatric endocrinologist for advice.