Transition to adult care (17 to 21)

What transition gets right, and where it leaks

Paediatric diabetes teams build long relationships. By the time a young person is seventeen, the nurse has known them through primary school, the dietitian has met the grandparents, and the consultant has sat with the family through at least one mid-teens dip. The transition appointment moves all of that out of the room in a single afternoon. The adult clinic the young person walks into next is bigger, busier, organised around different appointment slots, and assumes the person in front of it can speak for themselves about insulin, food, alcohol, sleep, contraception, and work. Most can; not all can yet.

ISPAD 2022 Chapter 21 (Gregory et al, Pediatric Diabetes) is clear that the structural risk in this window is real, not a failure of any one young person. Glycaemic outcomes deteriorate for most adolescents as autonomy transfers and developmental demands rise. The chapter names a care ambassador or patient navigator as the intervention that most consistently improves the move to adult services. The leak is not at the handover itself. The leak is in the months either side of it, when paediatric ties have loosened and adult ties have not yet formed, and the young person carries the gap on their own.

What helps is naming the gap before it opens, planning the conversation around it, and keeping a hand on the bridge from both sides.

The 18-month conversation

Most paediatric services that do transition well start the conversation around the young person’s sixteenth birthday, not their eighteenth. That gives roughly eighteen months for the practical and emotional work, and it lets the young person rehearse the appointment as theirs rather than the parent’s. The shape of those eighteen months is recognisable, and the graphic below is the way the Birmingham Women’s and Children’s team teaches it to families.

The eighteen-month window is not a checklist. It is a chance to put the practical work (sick-day routines, alcohol, contraception, pre-conception counselling for anyone who can become pregnant, university or work pathways, NHS number and prescription routes) in the same room as the emotional work. ISPAD 2022 Chapter 21 names pre-conception counselling as starting at early puberty for this reason; by the time a young person is choosing universities, the conversation should be already familiar.

What good handover looks like, line by line

The transfer letter is the document that does the work of memory after the paediatric team steps back. From the conversations I have at Birmingham Women’s and Children’s, the families who land softly into the adult clinic are usually the ones whose transfer letter carried the long-form story, not just the clinical summary. Ask the paediatric team what is going in the letter, and ask whether the items below are on it.

What good adult diabetes care looks like

Adult diabetes services are different from paediatric ones in scale and rhythm, not in commitment. From the consultant-led structured-education programmes I teach with (DAFNE, BERTIE, DYNAMIC, GAME), what families see at their best is a clinic that asks the young adult what they want from the appointment before it tells them what is on the agenda. The annual review takes the eye-screening, kidney-screening, blood pressure, cholesterol and foot exam seriously without making them the whole appointment. The team holds psychology access without the young adult having to escalate to ask. The pump and CGM conversations are with someone who knows the device, not someone who needs the young adult to explain it. The adult team listens before it prescribes.

What the family can do in the months either side of the handover is help the young adult name what they want from the new team without dictating it. Most paediatric services support a year of contact after transfer if the family asks; most adult services are happy to take a phone call about the back-story rather than rebuilding the picture from scratch. The handover is a moving conversation, not a single appointment.

The consent shift, plainly stated

From eighteen, consent for clinical decisions sits with the young adult. The team will, in most services, ask whether the young adult wants the parent to remain on the contact list, whether the parent can attend appointments, whether the CGM share account stays open, and how the family communicates about clinic letters. Most young adults want a parent involved in some role, often a different role from the lead-manager one the parent has carried for a decade. Naming the role out loud, with the team in the room, is the part of transition that hands over cleanly.

For the parent, the practical move is to ask the young adult what they want, in advance of the appointment, and to ask the adult team how to be helpful without leading. The longest-serving consultant the young adult has is you; the role does not stop, it changes register. The night-time CGM watch you started in the under-2s years can keep going for as long as the young adult wants it to. None of that is failure on either side; it is the shape that love after the formal handover takes for many families.

The emerging-adult distress signature

What young adults with T1D worry about between eighteen and thirty does not look like what older adults worry about, and the older diabetes-distress questionnaires do not capture it. Wentzell and colleagues (2022, Canadian Journal of Diabetes) built and validated the Problem Areas in Diabetes Emerging Adult questionnaire on 287 young adults with T1D, ages eighteen to thirty, and the items that landed highest were the cost of insulin and supplies, the worry that sleep, work, and school routines will be interrupted by glucose, perfectionism in management, worry about future children, and being annoyed by ignorant remarks from people who do not have T1D. The questionnaire correlates modestly but significantly with HbA1c (Spearman rho 0.20), which is the structural point: distress in this age band is not a separate wellbeing endpoint, it tracks the glucose.

From the clinic side, those items are the ones the conversation often glances off. A consultant asks about hypos and HbA1c; the young person says it is fine; the cost worry, the partner conversation, the worry about whether to tell a new employer, all stay outside the appointment. ISPAD 2022 Chapter 21 names motivational interviewing delivered by psychologists as the intervention that most consistently improves outcomes here; what families notice is that the team makes space for the conversation rather than waiting for the young person to bring it.

Watch for the changes the young person does not name. The CGM that comes off at parties and stays off into Monday. The skipped boluses that the download finds before the conversation does. The university year where the appointment is rebooked twice. These are the early signs that the distress is doing work the glucose has not caught up with yet.

From parent-led to self-led care

The handover that matters most is not between paediatric and adult services. It is between the parent and the young adult. For most families, that handover has been underway for years before the formal date in the calendar, and it does not end on the day of the joint clinic. Hilliard and colleagues (2013, Patient Education and Counseling) followed 150 adolescents with T1D over twelve months and showed that quality of life at the start of the care year predicted blood-glucose monitoring at six months, which then predicted HbA1c at twelve. The path is indirect; the mood and engagement layer is upstream of the behaviour, and the behaviour is upstream of the number. When the young adult is the one carrying the load alone, the same path applies, only now you, the parent, are watching it from further away.

Most parents step back from the dosing first, the food-and-portion conversation second, and the night-time CGM watch last. The night-time watch is the one that lingers, because it is the one that started in the under-2s years and never really stopped. Many parents keep a Dexcom Share or CamAPS Follow account active long after the young person has stopped looking at theirs; some keep it for life. None of that is failure. It is the shape of love after the formal handover; the team in the adult clinic knows the young person from this year, and you have known them from before they knew themselves.

What the team in the adult clinic does not have, and cannot have, is the family memory. They will not know that the 3am cot in the under-2s years was the original night-time watch, or that the school bolus routine took two years to settle. Your job after the handover is to stay available without leading. The young adult is the principal; you are the longest-serving consultant they will ever have.

The evidence we still want to add

This is the section where the page tells the truth about its own evidence base. The transition window is the part of paediatric T1D care where the published evidence is thinnest and the lived risk is highest. Hilliard 2013 and Wentzell 2022 anchor the mood and distress side of the story, ISPAD 2022 and 2024 Chapter 21 anchor the consensus, and the GNL approximately 500,000 patient-days from approximately 1,300 people living with diabetes over more than ten years carries the adult-side signal. What sits in the queue for v1.1 of the paediatrics evidence pack are two papers that would strengthen the case considerably.

Garvey and colleagues’ transition-perspectives work (Diabetes Educator, 2012) describes what young adults themselves identified as the gaps in the move to adult services, in their own words. The Pyatak BeST trial of behavioural treatment for post-transition diabetes management is the closest the literature has to a randomised intervention designed for the eighteen-to-thirty window. Neither is yet on our shelf in full; both are queued for the next library batch and the next pack revision. The honest position is that the page in front of you is built on the best available evidence today, that the evidence base will keep moving, and that GNL revises when better data arrives rather than waiting until the case is closed.

This is the locked epistemic stance for everything on the GNL platform. Strong convictions, loosely held; every fact has a half-life. Transition care is changing in real time as more services train care navigators, as Grace and tools like it carry some of the conversation between appointments, and as the adult clinics that receive young people from paediatrics adapt to what they are receiving. The page you are reading now is version one. Version two will arrive.