Paediatric Guide

Children and Young People with Type 1 Diabetes: What Actually Matters Most

A four-year-old, half-asleep, hands the CGM to her mother before the alarm has even fully rung. A fourteen-year-old packs the glucose tabs into the side pocket of his school bag without being asked. A sixteen-year-old in the kitchen at 11pm, asking about the long evening ahead. The body does not change between these moments. What changes is what the family is doing, and what the child can do for themselves.

Infant under 2 Preschool 2 to 6 Paediatric 7 to 14 Adolescent 15 to 17

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One body, four rhythms

The body talks back through the glucose, honestly, in every age band. What shifts is what the family is doing, and what the child can do for themselves. The international paediatric guidelines (ISPAD 2024) now route care through four bands: infant under 2, preschool 2 to 6, paediatric 7 to 14, and adolescent 15 to 17. Each band has its own rhythm, its own evidence layer, and its own moments that the family already knows by heart.

Four paediatric age bands and what is distinctive about each in T1D A horizontal timeline from infant under 2 through preschool 2 to 6, paediatric 7 to 14, and adolescent 15 to 17. Each band names the developmental rhythm, the evidence anchor, and the family work distinctive to that age. Four paediatric age bands, four rhythms ISPAD 2024 routes care by these bands. Each band has its own evidence layer and family work. Diagnosis Adult care INFANT Under 2 Rhythm Body cannot speak yet. Family is the voice. DKA at diagnosis ~60% under 1 year (Cherubini 2020) Trial spine KidsAP02 (CamAPS), Sherr 2022 (OP5) 82% night TIR Family work CGM as 4am voice. 0.1-unit dose error matters. PRESCHOOL 2 to 6 Rhythm Toddler tells you everything except their glucose. Trial spine Sherr 2022 (OP5): +11pp TIR, no severe hypo, no DKA ISPAD 2024 Ch 23 Recommends AID in this band where available. Family work Second site of care: nursery, grandparents. PAEDIATRIC 7 to 14 Rhythm Cognitive partnership starts. School morning is the moment. Trial spine Pihoker 2023 (780G), Brown 2021 (OP5), Bassi 2023 head-to-head QoL is upstream Hilliard 2013: low QoL predicts reduced BG checks then HbA1c rise Family work Step in / step back balance per the day. ADOLESCENT 15 to 17 Rhythm The bridge to adult care. Identity, exams, first job, first long evening out. DKA risk on AID Karges 2024: IRR 2.45 if HbA1c > 7.5%, 3.43 if > 8.5% (n=13,922) Distress screen Wentzell 2022 PAID-EA (adapted, alpha 0.89) Family work Receding parent; team transition plan 18 months out.
One body, four rhythms. Each band sits with the family work, the evidence anchor, and the moment the parent already recognises.

Under 2: when the body cannot yet speak

You learn the signs your child cannot tell you. The way the mood drops before the number does. The half-second pause before a feed. The damp cot at 4am that means you missed something three hours ago. Most of the under-2s diagnosed with T1D arrive in DKA, around sixty percent of children diagnosed under their first birthday in the largest international study we have (Cherubini 2020, Diabetologia). It is rarely because anyone missed the textbook signs. The textbook was written for older children, and infants present with vomiting, sleepiness, and faster breathing first. By the time anyone knows what they are looking at, the child is already in trouble.

After the first admission, the work is largely yours. The dose is small enough that a 0.1-unit error matters. The child cannot tell you they feel low. The CGM line at 4am becomes the closest thing to a voice they have. In children aged 1 to 7, two trials have shifted what is possible. KidsAP02 (Ware 2022, NEJM) showed hybrid closed-loop with CamAPS FX took nighttime time-in-range to eighty-two percent without raising hypoglycaemia. The Omnipod 5 preschool trial (Sherr 2022) ran the same direction in two- to five-year-olds: more time in range, no severe hypos, no DKA across thirteen weeks. The systems do not remove the work. They shift where the work goes. You watch fewer numbers, you trust the algorithm overnight, and you reclaim some of the sleep you have lost.

None of this is easy to start, and access varies. Your paediatric diabetes team is the first conversation. Ask early, ask in writing if you need to, and ask again if the first answer is “not yet”.

Two to six: the toddler who tells you everything except their glucose

Toddlers tell you everything. They tell you they are tired, hungry, bored, scared, brilliant, furious. They do not yet tell you they are 3.4 mmol/L (61 mg/dL) and dropping. The energy crash before lunch, the unprovoked tears at 4pm, the strange quiet ten minutes into the playground; these are the family’s translation system, and the family is the one decoding them. By the time a child is three or four, parents and grandparents and nursery staff have built up an instinct that no algorithm has, and the algorithm gets better when it learns from them.

The evidence base in this band has matured in the last three years. The Omnipod 5 preschool trial (Sherr 2022, Diabetes Care) showed time in range up by around eleven percentage points, roughly two and a half extra hours a day in target, with no severe hypoglycaemia and no DKA. KidsAP02 (Ware 2022) ran in the same direction with CamAPS FX, with the heaviest benefit overnight. ISPAD 2024 Chapter 23 now recommends hybrid closed-loop in this age band where it is available. There is one finding from the older evidence that AID has changed: in the open-loop pump era, Karges 2017 showed the severe-hypoglycaemia advantage of pumps over injections did not extend to one and a half to five year olds. Closed-loop is the technology that finally closed that gap.

Where the work changes shape is the second site of care. Nursery, grandparents, the babysitter on a Friday evening, the swim teacher. Every site needs a plan, a CGM-share permission, a glucagon rescue kit (nasal glucagon is licensed from age four and is materially easier for a non-clinician to deliver in a real emergency), and one clear point of contact. Most paediatric diabetes teams will help you write the school or nursery plan if you ask. Ask your team for it; ask them to put it in writing; ask them to update it when the child moves between settings.

Seven to fourteen: the child who is starting to manage their own diabetes

The school morning is the moment. Sandwich box, PE kit, glucose tabs in the side pocket, CGM check, “have you got everything?”, and the door. Some days the child is in charge of the whole sequence; some days they are five years old in a fourteen-year-old body and need every step done for them. This is the band where the cognitive partnership starts. The child is learning to read their own body, the parent is learning when to step in and when to step back, and the diabetes team is learning what kind of family this is.

The trial evidence in this band is the deepest of any paediatric age group. The MiniMed 780G paediatric pivotal (Pihoker 2023, Diabetes Technology and Therapeutics) and the Omnipod 5 pivotal (Brown 2021) both show sustained time-in-range gains. Bassi 2023 ran a small Italian retrospective head-to-head between MiniMed 780G and Tandem Control-IQ; the MiniMed group sat at seventy-one percent time-in-range against the Tandem group’s sixty-eight, but the groups differed materially in age and starting HbA1c, so the read is direction not verdict. The system that fits this child’s life and this family’s preference is the one that delivers the most. ISPAD 2024 chapters 16, 17, and 22 cover technology and the school day; the structured-education programmes (DAFNE for older adolescents and young adults, BERTIE-online, the BWC DYNAMIC and GAME programmes) are the curriculum we lean on for the carbohydrate-counting and bolus-timing layer.

One leading indicator we now watch carefully is quality of life. Hilliard 2013 (Patient Education and Counseling) followed adolescents over twelve months and showed that lower quality of life at the start of a care year predicted reduced blood-glucose monitoring at six months, which then predicted higher HbA1c at twelve. Quality of life is not a soft endpoint here; it is upstream of the behaviour that drives the trajectory. ISPAD 2024 Chapter 15 treats screening for diabetes distress, depressive symptoms, and family functioning as part of the routine diabetes visit, not a referral out. If something has changed in your child’s mood, sleep, eating, or engagement with diabetes care, your team is the first conversation. They have the brief script, they know who to bring in, and they would rather hear it early.

Quality of life is upstream of glycaemic trajectory in adolescent T1D A three-stage causal cascade across twelve months: quality of life at the start of the year drives blood-glucose monitoring at six months, which drives HbA1c at twelve months. Hilliard 2013 anchored. Quality of life is upstream of HbA1c Hilliard 2013 cascade across twelve months. The behaviour layer sits between the upstream predictor and the downstream outcome. Month 0 Month 6 Month 12 1 QUALITY OF LIFE Measured at the start of the care year. The upstream signal Mood, sleep, eating, engagement. 2 BG MONITORING Reviewed at six months. The behaviour layer CGM checks, fingersticks, bolus delivery. 3 HbA1c Measured at twelve months. The downstream outcome Three-month average. The number on the chart. Hilliard 2013, Patient Education and Counseling. Quality of life is not a soft endpoint, it is upstream of the behaviour that drives the trajectory.
Hilliard 2013 cascade across twelve months. The behaviour layer sits between the upstream predictor and the downstream outcome.

Fifteen to seventeen: the late teenager standing on the bridge to adult care

The exams matter. The friendships matter. The first job and the first long evening at someone else’s house matter. Through all of it, the diabetes is still there at 4pm and 11pm and 3am, whether the teenager wants it to be or not. This is the bridge to adult care, and the international data tell us it is the canonical glycaemic dip; the teenager has more on their plate than at any point so far, and the diabetes is asking for the same attention as ever.

The Karges 2024 DPV cohort (Lancet Diabetes Endocrinology) is the trial to know. In nearly fourteen thousand young people on closed-loop, DKA risk concentrates in those whose HbA1c sits above 7.5 percent, and rises further above 8.5 percent. The mechanism is plain enough: when the algorithm is doing the day-to-day work, device problems and missed insulin go undetected for longer. The educational response is sick-day rules, ketone monitoring, and a routine of looking at the system together every few weeks. The broader response is a mental-health and identity conversation that has to happen alongside the technology, not after it.

The validated instrument for this window is the Problem Areas in Diabetes, Emerging Adult version (Wentzell 2022). It captures what late-teen and emerging-adult distress actually looks like: cost worries, perfectionism, future-children worries, partner-disclosure worries, feeling judged by people who do not have T1D. ISPAD 2024 chapters 15 and 21 treat routine screening for distress, depressive symptoms, and disordered eating as part of the diabetes visit. Eating-disorder risk in T1D is higher than in the general population, and the early signs (insulin omission, unexplained weight change, hidden meal patterns) are the team’s job to look for. Telling the team early is not over-reacting; it is exactly what the team is there for.

The bridge to adult care begins now, not at the moment of the actual transition. Most paediatric services start the conversation eighteen months out, write a transition plan with the young person in the room, and join the first adult clinic appointment if asked. The young person, the family, and the diabetes team are all on this bridge together; the team’s job is to make sure no one steps off it alone.

The four pivotal trials, side by side

Across the four bands, the closed-loop trials run in the same direction. The picture below puts them next to each other so the family lens reads cleanly: the gain is real, the magnitude is similar, the populations and durations differ, and a head-to-head between systems is not what these trials were built to be.

Closed-loop trial outcomes by paediatric age band Bar chart showing time-in-range gain on hybrid closed-loop versus prior care, by paediatric age band: KidsAP02 in 1 to 7 year olds, Sherr 2022 in 2 to 6 year olds, Brown 2021 in 6 to 13 year olds, and Pihoker 2023 in 7 to 17 year olds. Closed-loop trial outcomes by paediatric age band Direction and approximate magnitude of TIR gain. Not a head-to-head benchmark; populations and durations differ. TIR gain (pp) +15 +10 +5 +0 +8.7 pp TIR KidsAP02 CamAPS FX Ages 1 to 7, n=74 Ware 2022, NEJM +11 pp TIR Sherr 2022 Omnipod 5 Ages 2 to 6, n=80 Diabetes Care +10 pp TIR Brown 2021 Omnipod 5 pivotal Ages 6 to 13.9 Diabetes Care +12 pp TIR Pihoker 2023 MiniMed 780G Ages 7 to 17, n=160 DTT What the bars share All four trials report TIR gains in the +8 to +12 pp range, no severe hypoglycaemia, no DKA across the trial periods. Per-band magnitude is illustrative; populations, durations, and prior-care comparators differ between trials.
Four pivotal trials, four bands, the same direction of travel. The chart reads as a family lens, not a league table.

What carries across all four bands

If you are reading this with a child on a CGM in the next room, the thread that joins the four bands is something you already know. The family is the constant. Not in a sentimental way; in a clinical and structural way. The CGM share goes to the parent, then to the parent and the partner, then to the parent and the school, then to the young person and a slowly-receding parent. The sibling without T1D absorbs the family rhythm anyway. The partner of a parent with a child with T1D learns the night-time language even before they learn the daytime one. The diabetes team is the second constant; they hold the longitudinal record across the bands, they know what your family does well and where it tends to struggle, and they are the people best placed to spot the moments where the routing changes.

CGM share, the handoff that moves with the child A timeline showing the CGM share progression: parent only in infancy, parent plus partner in toddler years, parent plus school in school years, and the slowly-receding parent as the young person takes over in adolescence. CGM share, the handoff that moves with the child The list grows, then grows, then narrows again. Each step is a clinic conversation worth having before it is needed. 1 Infant Under 2 Parent only. Both parents on the same alarm setup. 2 Preschool 2 to 6 Add: nursery, grandparents, babysitter. 3 Paediatric 7 to 14 Add: school nurse, PE staff. The young person starts looking. 4 Adolescent 15 to 17 Young person leads. Parent slowly recedes but stays available. The handoff is a clinic conversation, not a setting Each transition has a written plan. The diabetes team helps you draft the school plan, the nursery plan, and the eventual transition-to-adult plan.
The CGM share grows, then grows again, then narrows. Each step is a clinic conversation worth having before it is needed.

Population averages are most of the story. They are not all of it. The trials we lean on describe what happens to the typical child and the typical family; the technology, the structured education, and the team-and-family partnership get most families most of the way to the gain. The remaining piece is your child, and it is where life actually happens. Every figure on this page is a starting point for a conversation with your diabetes team, not a target to hit alone.

Ask early. Ask in writing if you need to. Ask again if the first answer is “not yet”. The team is set up to work this way; the system rewards families who advocate.

Acknowledgements

This guide draws on the clinical experience of the paediatric diabetes team at Birmingham Women’s and Children’s NHS Foundation Trust, with particular thanks to Louise Collins, RN and Dr Ruth Krone. The evidence layer is built on the work of Valentino Cherubini and the international DKA-at-diagnosis collaboration; Helena Elding-Larsson and the TEDDY Study Group; Julia Ware, Roman Hovorka, and the Cambridge KidsAP Consortium; Jennifer L Sherr, Trang T Ly, and the Omnipod 5 in Preschoolers Study Group; Beate Karges, Reinhard W Holl, and the German and Austrian DPV registry; Catherine Pihoker and the 780G paediatric pivotal team; Sue A Brown and the Omnipod 5 pivotal team; Lia Bally and the Bassi head-to-head team; Marisa E Hilliard, Korey K Hood, and the Johns Hopkins / Cincinnati Children’s behavioural team; Katherine Wentzell, Lori M B Laffel, and the Joslin Diabetes Center / Boston College team; and the International Society for Paediatric and Adolescent Diabetes 2024 Clinical Practice Consensus Guidelines (chapters 11, 15, 16, 17, 21, 22, 23). Synthesis and house style by John Pemberton with the GNL team.

References

Cherubini 2020, DKA at diagnosis (13-country collaboration)

Cherubini V, et al. Temporal trends in diabetic ketoacidosis at diagnosis of paediatric type 1 diabetes between 2006 and 2016: results from 13 countries in three continents. Diabetologia. 2020;63(8):1530-1541. DOI

Ware 2022, KidsAP02 (CamAPS FX in 1 to 7 year olds)

Ware J, et al. Randomised trial of closed-loop control in very young children with type 1 diabetes (KidsAP02). New England Journal of Medicine. 2022;386(3):209-219. DOI

Sherr 2022, Omnipod 5 preschool trial

Sherr JL, et al. Safety and glycaemic outcomes with a tubeless automated insulin delivery system in very young children with type 1 diabetes: a single-arm multicentre clinical trial. Diabetes Care. 2022;45(8):1907-1910. DOI

Karges 2017, pump versus injection in young children (DPV)

Karges B, et al. Association of insulin pump therapy vs insulin injection therapy with severe hypoglycaemia, ketoacidosis, and glycaemic control among children, adolescents, and young adults with type 1 diabetes. JAMA. 2017;318(14):1358-1366. DOI

Karges 2024, AID and DKA risk in young people (DPV)

Karges B, et al. Hybrid closed-loop insulin therapy and risk of severe hypoglycaemia and diabetic ketoacidosis in young people with type 1 diabetes (DPV registry). The Lancet Diabetes and Endocrinology. 2024. DOI

Pihoker 2023, MiniMed 780G paediatric pivotal

Pihoker C, et al. MiniMed 780G paediatric pivotal trial. Diabetes Technology and Therapeutics. 2023.

Brown 2021, Omnipod 5 pivotal (mixed-age, includes paediatric)

Brown SA, et al. A 6-month, randomised, multicentre trial of a tubeless automated insulin delivery system in children and adults with type 1 diabetes. Diabetes Care. 2021;44(7):1630-1640. DOI

Bassi 2023, Control-IQ versus 780G in paediatric T1D (Italian retrospective)

Bassi M, et al. Comparison of glycaemic outcomes between Tandem Control-IQ and MiniMed 780G hybrid closed-loop systems in paediatric type 1 diabetes. Frontiers in Endocrinology. 2023.

Hilliard 2013, quality of life predicts glycaemic trajectory

Hilliard ME, et al. How poorer quality of life in adolescence predicts subsequent type 1 diabetes management and control. Patient Education and Counseling. 2013;91(1):120-125. DOI

Wentzell 2022, PAID-EA distress instrument for emerging adults

Wentzell K, et al. Assessing diabetes distress in emerging adults with type 1 diabetes: development and validation of the Problem Areas in Diabetes, Emerging Adult version. Canadian Journal of Diabetes. 2022;46(5):503-509. DOI

ISPAD 2024, paediatric consensus chapters

International Society for Paediatric and Adolescent Diabetes (ISPAD). Clinical Practice Consensus Guidelines 2024, chapters 11 (DKA), 15 (psychological care), 16 and 17 (technology), 21 (adolescence), 22 (school), 23 (managing preschoolers). Pediatric Diabetes. 2024.

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