'We Just Have to Keep Them Alive': Transitioning Youth With Type 1 Diabetes

Grazia Aleppo, MD, and Lisa Nainggolan

January 21, 2022

Dr Tabitha Randell

"No one has asked young people what they want," says Tabitha Randell, MBChB, an endocrinologist with Nottingham University Hospitals NHS Trust, UK, who specializes in treating teenagers with type 1 diabetes as they transition to adult care.

Randell, who has set up a very successful specialist service in her hospital for such patients, says: "We consistently have the best, or the second best, outcomes in this country for our diabetes patients." She believes this is one of the most important issues in modern endocrinology today.

Speaking at the Diabetes Professional Care (DPC) conference in London at the end of last year, and sharing her thoughts afterward with Medscape Medical News, she noted that in general there are "virtually no published outcomes" on how best to transition a patient with type 1 diabetes from pediatric to adult care.

"If you actually get them to transition — because some just drop-out and disengage and there's nothing you can do — none of them get lost. Some of them disengage in the adult clinic, but if you're in the young diabetes service [in England] the rules are that if you miss a diabetes appointment you do not get discharged, as compared to the adult clinic, where if you miss an appointment, you are discharged."

In the young diabetes clinic, doctors will "carry on trying to contact you, and get you back," she explains. "And the patients do eventually come back in — it might be a year or two, but they do come back. We've just got to keep them alive in the meantime!"

We've just got to keep them alive in the meantime!

This issue needs tackling all over the world. Randell says she's not aware of any one country — although there may be "pockets" of good care within a given country — that is doing this perfectly.

Across the pond, Grazia Aleppo, MD, division of endocrinology, at Northwestern University in Chicago, Illinois, agrees that transitioning pediatric patients with type 1 diabetes to adult care presents "unique challenges."

Challenges When Transitioning From Pediatric to Adult Care

Dr Grazia Aleppo

During childhood, type 1 diabetes management is largely supervised by patients' parents and members of the pediatric diabetes care team, which may include diabetes educators, psychologists, or social workers, as well as pediatric endocrinologists.

When the patient with type 1 diabetes becomes a young adult and takes over management of their own health, Aleppo says, the care team may diminish along with the time spent in provider visits.

The adult endocrinology setting focuses more on self-management and autonomous functioning of the individual with diabetes.

Adult appointments are typically shorter, and the patient is usually expected to follow doctors' suggestions independently, she notes. They are also expected to manage the practical aspects of their diabetes care, including prescriptions, diabetes supplies, laboratory tests, scheduling, and keeping appointments.

At the same time that the emerging adult needs to start asserting independence over their healthcare, they will also be going through a myriad of other important lifestyle changes, such as attending college, living on their own for the first time, and starting a career.  

"With these fundamental differences and challenges, competing priorities, such as college, work and relationships, medical care may become of secondary importance and patients may become disengaged," Aleppo explains.

As Randell has said, loss to follow-up is a big problem with this patient population, with disengagement from specialist services and worsening A1c across the transition, Aleppo notes.

This makes addressing these patients' specific needs extremely important, she added.

Engage With Kid, Not Disease; Don't Palm Them Off on New Recruits

"The really key thing these kids say is, 'I do not want to be a disease,'" Randell says. "They want you to know that they are a person. Engage these kids!" she suggests. "Ask them, 'How is your exam revision going?' Find something positive to say, even if it's just, 'I'm glad you came today.'"

"If the first thing that you do is tell them off [for poor diabetes care], you are never going to see them again," she cautions.

Randell also says that role models with type 1 diabetes, such as Lila Moss — daughter of British supermodel Kate Moss — who was recently pictured wearing an insulin pump on her leg on the catwalk, are helping youngsters not feel so self-conscious about their diabetes.

Lila Moss wearing an insulin pump on her leg on the catwalk.

"Let them know it's not the end of the world, having [type 1] diabetes," she emphasizes.  

And Partha Kar, MBBS, OBE, national specialty advisor, diabetes with NHS England, agrees wholeheartedly with Randall.

Reminiscing about his early days as a newly qualified endocrinologist, Kar, who works at Portsmouth Hospital NHS Trust, UK, noted that as a new member of staff he was given the youth with type 1 diabetes — those getting ready to transition to adult care — to look after.

But this is the exact opposite of what should be happening, he emphasizes. "If you don't think transition care is important, you shouldn't be treating type 1 diabetes."

If you don't think transition care is important, you shouldn't be treating type 1 diabetes.

He believes that every diabetes center "must have a young-adult team lead" and this job must not be given to the least experienced member of staff.

This lead "doesn't need to be a doctor," Kar stressed. "It can be a psychologist, or a diabetes nurse, or a pharmacist, or a dietician."

In short, it must be someone experienced who loves working with this age group.  

Randell agrees: "Make sure the team is interested in young people. It shouldn't be the last person in who gets the job no one else wants." Teens, she says, "are my favorite group to work with. They don't take any nonsense."

And she explains, "Young people like to get to know the person who's going to take care of them. So, stay with them for their young adult years." This can be "quite a fluid period," she added, with it normally extending to age 25, but in some cases, "it can be up to 32 years old."  

Preparing for the Transition

To ease pediatric patients into the transition to adult care, Aleppo recommends that the pediatric diabetes team provide enough time so that any concerns the patient and their family may have can be addressed.

This should also include transferring management responsibilities to the young adult rather than their parent.

The pediatric provider should discuss with the patient available potential adult colleagues, personalizing these options to their needs, she says.

And the adult and pediatric clinicians should collaborate and provide important information beyond medical records or health summaries.

Adult providers should guide young adults on how to navigate the new practices, from scheduling follow-up appointments to policies regarding medication refills or supplies, to providing information about urgent numbers or email addresses for after-hours communications.

Kar reiterates that there are too few published outcomes in this patient group to guide the establishment of good transition services.

"Without data, we are dead on the ground. Without data, it's all conjecture, anecdotes," he says.

What he does know is that in the latest national type 1 diabetes audit for England, "Diabetic ketoacidosis (DKA) admissions...are up in this age group," which suggests these patients are not receiving adequate care.

Be a Guide, Not a Gatekeeper

Dr Partha Kar

Kar stresses that of the 8760 hours in a year, the average patient with type 1 diabetes in the UK gets just "1 to 2 hours with you as a clinician, based on four appointments per year of 30 minutes each."

"So you spend 0.02% of their time with individuals with type 1 diabetes. So, what's the one thing you can do with that minimal contact? Be nice!"

Kar says he always has his email open to his adult patients and they are very respectful of his time. "They don't email you at 1 AM. That means every one of my patients has got support [from me]. Don't be a barrier."

"We have to fundamentally change the narrative. Doctors must have more empathy," he says, stating that the one thing adolescents have constantly given feedback on has been, "Why don't appointments start with 'How are you?'"

"For a teenager, if you throw type 1 diabetes into the loop, it's not easy," he stresses. "Talk to them about something else. As a clinician, be a guide, not a gatekeeper. Give people the tools to self-manage better."

Adult providers can meet these young adult patients "at their level," Aleppo agrees.

"Pay attention to their immediate needs and focus on their present circumstances — whether how to get through their next semester in college, navigating job interviews, or handling having diabetes in the workplace."

Paying attention to the mental health needs of these young patients is equally "paramount," Aleppo says.

While access to mental health professionals may be challenging in the adult setting, providers should bring it up with their patients and offer counseling referrals.

"Diabetes impacts everything, and office appointments and conversations carry weight on these patients' lives as a whole, not just on their diabetes," she stresses.

"A patient told me recently, 'We're learning to be adults,' which can be hard enough, and with diabetes it can be even more challenging. Adult providers need to be aware of the patient's "diabetes language" in that often it is not what a patient is saying, rather how they are saying it that gives us information on what they truly need."

"As adult providers, we need to also train and teach our young patients to advocate for themselves on where to find resources that can help them navigate adulthood with diabetes," she adds.

One particularly helpful resource in the United States is the College Diabetes Network (CDN), a not-for-profit organization whose mission is to equip young adults with type 1 diabetes to successfully manage the challenging transition to independence at college and beyond.

"The sweetest thing that can happen to us as adult diabetes providers is when a patient — seen as an emerging adult during college — returns to your practice 10 years later after moving back and seeks you out for their diabetes care because of the relationship and trust you developed in those transitioning years," Aleppo says.

The sweetest thing that can happen to us...is when a patient — seen as an emerging adult — returns to your practice 10 years later...and seeks you out for their diabetes care.

Another resource is a freely available comic book series co-created by Kar and colleague Mayank Patel, MBBS, an endocrinologist from University Hospital Southampton NHS Foundation Trust.

As detailed by Medscape Medical News last year, the series consists of three volumes: the first, Type 1: Origins, focuses on actual experiences of patients who have type 1 diabetes; the second, Type 1: Attack of the Ketones, is aimed at professionals who may provide care but have limited understanding of type 1 diabetes; and the third, Type 1 Mission 3: S.T.I.G.M.A., addresses the stigmas and misconceptions that patients with type 1 diabetes may face.

The idea for the first comic was inspired by a patient who compared having diabetes to being like the Marvel character The Hulk, says Kar, and has been expanded to include the additional volumes.

Kar and Patel have also just launched the fourth comic in the series, Type 1 Generations, to mark the 100-year anniversary since insulin was first given to a human.

"This Is High Priority"  

Kar says the NHS in England has just appointed a national lead for type 1 diabetes in youth, Fulya Mehta, MD, of Alder Hey Children's NHS Foundation Trust, Liverpool.

"If you have a plan, bring it to us," he told the audience at the DPC conference, and "tell us, what is the one thing you would change? This is not a session we are doing just to tick a box. This is high priority."

"Encourage your colleagues to think about transition services. This is an absolute priority. We will be asking every center [in England] who is your transitioning lead?"

And he once again stressed that "a lead of transition service does not have to be a medic. This should be a multidisciplinary team. But they do need to be comfortable in that space. To that teenager, your job title means nothing. Give them time and space."

Randell sums it up: "If we can work together, it's only going to result in better outcomes. We need to blaze the trail for young people."

Aleppo has reported serving as a consultant to Dexcom and Insulet and receiving support to Northwestern University from AstraZeneca, Dexcom, Eli Lilly, Fractyl Health, Insulet, and Novo Nordisk. Randell and Kar have no conflicts of interest.

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