Paediatric T1D Guide, Part 3 of 4
Adolescents with T1D (15 to 17)
Your daughter is in the kitchen pulling the CGM off her arm before a friend’s birthday party. The conversation is brief; she does not want it on at the party, she does not want it on in the photos, she does not want to talk about it. What sits underneath the rejection is rarely the device itself. It is more often a quiet, accumulated tiredness with the work of being the person at the party who has a chronic condition. The adolescent stretch is the hardest part of the paediatric arc, and the work the family has been doing has not stopped being important. The conversation is what has to change.
Ask Grace
Want to talk through the adolescent glycaemic dip, diabetes distress, or what an exercise window looks like in the 15 to 17 band? Ask Grace.
The adolescent dip is structural, not a personal failure
In clinic the picture is recognisable. The HbA1c drifts up from age 13. The CGM sits in the drawer for weekends. The bolus before lunch gets skipped, not by accident, but because the chemistry-lesson queue did not allow time and the day moved on. Most adolescents with T1D, in the families I work with at Birmingham Women’s and Children’s, are quietly tired of being the one in the room with the condition. The parent reading this has likely already noticed the shift, and likely already had the conversation that did not land the way it was meant to. The work the family has been doing has not stopped being important. What has changed is the size of the gap between what the body is asking of an adolescent and what an adolescent has the bandwidth to give back.
The international consensus describes this gap as structural. ISPAD’s 2022 adolescence chapter (Gregory and colleagues, Pediatric Diabetes) names glycaemic deterioration in adolescence as the population norm rather than a moral lapse: growth-driven insulin resistance compounds with autonomy transfer, peer dynamics, and the emergence of diabetes distress. The 2024 chapter carries the framing forward. Knowing this is not a fix, but it changes who is to blame for the year-on-year drift, which is almost always no one. The family is doing the work; the developmental stage is doing the rest.
The shape of the dip
A simplified view of the typical paediatric HbA1c trajectory across the four life-stage bands the GNL guide cluster uses. The dip is structural, not a sign of failure, and lifts again in young adulthood when life regains some predictability.
Schematic. The figure shows the pattern that registry and consensus data describe, not a prescription for any one young person. Population-average framing; the adolescent in your house may sit higher or lower than this curve.
Quality of life is a leading indicator, not a soft endpoint
One of the most useful prospective studies for parents to know about is also one of the quietest. Hilliard and colleagues (2013, Patient Education and Counseling) followed 150 adolescents with T1D for a year. The team measured quality of life at the start; they measured how often the young person checked their blood glucose six months in; they measured HbA1c at twelve. The headline finding was a cascade. Adolescents whose quality of life was lower at baseline were less likely to check their glucose six months later, and that reduced checking fed forward into a higher HbA1c at twelve months. The direct path from quality of life to HbA1c was not significant after adjustment; the indirect path through monitoring was.
The clinical implication matters for the conversation at home. When an adolescent’s quality of life is taking a hit (school, friendships, sleep, mood, identity), the diabetes work is the first thing that quietly slips, because the diabetes work is what each day requires the most willing self-management to keep up. The HbA1c follows the monitoring with a lag, and by the time the clinic letter notices, the family has been working with the consequence rather than the cause for months. Quality of life in adolescence is not a wellbeing afterthought. It is upstream of the year-on-year glycaemic trajectory. Bringing it into clinic conversations early is one of the few levers the evidence backs as a leading indicator.
Diabetes distress is a clinical condition, not a mood
The young people who say nothing in clinic and stop checking on weekends are often carrying something that has a name in the research literature. Diabetes distress is the term for the chronic, condition-specific emotional load of living with T1D: worry about the future, frustration with the daily routine, the cost of devices, the visibility of the condition in social settings, the perfectionism of trying to do the maths right and the helplessness when the numbers refuse to behave. Wentzell and colleagues (2022, Canadian Journal of Diabetes) developed and validated the first diabetes-distress questionnaire for the emerging-adult window, the PAID-EA, on 287 young adults with T1D aged 18 to 30. The instrument captures what distress at this age actually looks like: cost worries, perfectionism, future-children worries, partner-disclosure worries, feeling judged by people who do not have T1D. Cronbach alpha sat at 0.89, the single-component factor accounted for 29 percent of the variance, and the score correlated modestly but significantly with HbA1c (Spearman rho 0.20). The link between how an adolescent feels about the condition and how the condition behaves is real, measurable, and clinically relevant.
ISPAD’s 2022 psychological-care chapter (de Wit and colleagues, Pediatric Diabetes) raises this from observation to recommendation. Psychosocial care integrated with collaborative, person-centred medical care is rated Grade A for all youth with diabetes. Routine screening for diabetes distress, depression, anxiety and disordered eating with age-appropriate validated tools is expected practice; mental-health professionals trained in diabetes are essential members of the team. ISPAD 2024 Chapter 21 (Adolescence) and Chapter 15 (Psychological Care) carry the same framing forward, and Chapter 21 is the chapter to ask the team to walk through if the conversation in clinic has not yet covered this layer. For the family at home, the practical move is to ask the diabetes team whether psychology input is on the table when the conversation at home has run aground, and to ask in writing if the first answer is “not yet”. This is not a soft referral. It is the part of the standard of care that the team is expected to be offering.
Eating-disorder risk, the signs that hide in plain sight
Eating-disorder risk in T1D is higher than in the general adolescent population, and the early signs are subtle. Insulin omission for weight reasons, unexplained weight change, secret meal patterns, food rules that have crept in over months. None of these are the family’s failure to spot; they are usually invisible to the people closest to a young person, and the routine that makes them visible is the team’s, not the family’s. ISPAD 2024 Chapter 15 names disordered-eating screening as part of the diabetes visit; many UK paediatric services either run a brief screen now or are working towards one. The validated tool the field has converged on is the diabetes eating problems survey, in its revised form for T1D.
What the conversation looks like in practice is the diabetes team asking the young person directly, in language that does not pathologise, and giving the family a route in afterwards if a signal lands. Telling the team early about something you have noticed is exactly what the team is set up for; many adult and adolescent diabetes services have direct access to eating-disorder psychology or are explicitly working towards integrated care. From the family side, what helps is naming what you have seen without naming what you think it means, and letting the team build the picture from there.
Technology adoption, and sometimes technology refusal
The CGM coming off the arm before the party is one of the more common moments parents bring into clinic in this band. The sensor visible at the beach, the pump bulge under a shirt, the alarm that fires in the middle of a class presentation: each of these can be the moment a young person decides that the device is doing as much social work against them as it is doing physiological work for them. ISPAD’s psychological-care chapter (de Wit 2022) names alarm fatigue, body-image concerns, and disrupted sleep as recognised costs of diabetes technology, sitting alongside the well-documented quality-of-life gains. The trade-off is honest in the evidence; the conversation at home is better when it is honest too.
Where the discussion needs to be careful is at the higher-HbA1c end of the band. Karges and colleagues (2024, Lancet Diabetes and Endocrinology) reported the largest real-world safety dataset on hybrid closed-loop therapy in young people. Closed-loop reduced the worst kind of hypoglycaemia (coma requiring help, incidence rate ratio 0.68), but it was associated with higher DKA risk overall, concentrated in those with HbA1c 7.5 percent or above (IRR 2.45) and dramatically elevated at 8.5 percent or above (IRR 3.43). The mechanism is most likely silent infusion-site failure or undetected device malfunction in young people who have come to rely on the algorithm without watching the inputs. The implication is not to step away from closed-loop in adolescents; the glycaemic benefits are real. It is that an adolescent whose engagement with the device is drifting is also the adolescent who most needs the team’s sick-day rules, ketone awareness, and infusion-site discipline kept warm in clinic conversations. The technology does not remove the work. In this band, more than any other, it changes where the work has to go.
Exercise, identity, and the wider life
At sixteen the question is not really about exercise. It is about football practice, the gym after school, the long walk into town with friends, the dance lesson the young person picked up themselves last term. The diabetes work has to fit alongside the life the adolescent is choosing, not the other way around. Most of the questions parents bring to me in this band start as glucose questions and end as identity questions. The young person wants to know how to do what they want to do without the condition writing the agenda. That is a legitimate ask.
For activity planning specifically, the strongest adolescent-cohort evidence comes from the T1D Exercise In Paediatrics study. Bergford and colleagues (2024, Diabetes Technology and Therapeutics) followed 225 adolescents through nearly four thousand activities. The model the team built (using real-world CGM and smartphone-logged exercise data) identified a starting-glucose window that minimises the combined risk of hypo during activity and hyper after activity: 7.3 to 8.9 mmol/L (132 to 160 mg/dL) with a flat or gently falling CGM trend at the moment the exercise starts. The same study identified an end-of-activity window of around 7.1 to 7.4 mmol/L (128 to 133 mg/dL) with a near-flat trend as the marker that the rebound has been kept in check. Population-average estimates; the adolescent’s own pattern belongs in conversation with their diabetes care team. The figure exists to make the planning conversation more specific, not to write the dose.
The parent role shifts from manager to coach
The hardest part of this stretch for most parents is not the technology or the glycaemia. It is the recognition that the role is changing. For most of the paediatric arc the parent has been the manager: counting the carbs, programming the pump, calling the school, ringing the team when the numbers refuse to settle. In the 15 to 17 band the work does not stop, but the lead shifts. The young person needs space to take ownership; the parent needs to stay alongside without taking back the dose pen at the first wobble. ISPAD’s 2022 psychological-care chapter names family-based behavioural interventions (goal setting, problem solving, parental praise, shared responsibility, behavioural contracts) as the evidence-supported route through this. Effects on glycaemia are mixed; effects on the relationship and the parent-young person communication channel are consistent.
What this looks like in practice is less about new rules and more about which conversations the family chooses to have, and which ones it chooses to let go. The CGM at the party is one place to let go. The sick-day plan and the ketone meter are not. The pre-conception conversation, which ISPAD names from early puberty for any adolescent who could become pregnant, is one to start gently, framed as information rather than instruction. The transition to adult services, which the next part of this guide picks up, is one to introduce a year before it is clinically necessary, so the adolescent has time to ask the questions they need to ask before the team they have known since primary school steps back.
What adolescents need is not less monitoring; it is different conversations. The cascade the evidence describes (quality of life to monitoring frequency to HbA1c, then back through diabetes distress) does not respond to “check more”. It responds to psychology input integrated with the diabetes team, which ISPAD treats as Grade A standard of care, and to family conversations that meet the adolescent where they are. The clinic and the kitchen are both part of the answer; neither is the whole of it.
Take this to the team
If the HbA1c has been drifting up, if the CGM is in the drawer more than on the arm, if the conversations at home have stopped landing, that is a pattern worth bringing to your diabetes team rather than carrying alone. Ask whether psychology input is on the table; ask whether a care navigator (sometimes called a transition coordinator) is available; ask early about the move to adult services so it does not arrive as a surprise. Ask in writing if you need to. Ask again if the first answer is “not yet”.
Part 3 of 4
Adolescents with T1D (15 to 17)
Read more on GNL
References
- Bergford S, Riddell MC, Gal RL, Patton SR, Clements MA, Sherr JL, Calhoun P. Predicting hypoglycemia and hyperglycemia risk during and after activity for adolescents with type 1 diabetes (T1DEXIP). Diabetes Technology and Therapeutics. 2024. DOI: 10.1089/dia.2024.0061.
- de Wit M, Gajewska KA, Goethals ER, McDarby V, Zhao X, Hapunda G, Delamater AM, DiMeglio LA. ISPAD Clinical Practice Consensus Guidelines 2022: Psychological care of children, adolescents and young adults with diabetes. Pediatric Diabetes. 2022;23(8):1373-1389. DOI: 10.1111/pedi.13428.
- Gregory JW, Cameron FJ, Joshi K, Eiswirth M, Garrett C, Garvey K, Agarwal S, Codner E. ISPAD Clinical Practice Consensus Guidelines 2022: Diabetes in adolescence. Pediatric Diabetes. 2022;23(7):857-871. DOI: 10.1111/pedi.13408.
- Hilliard ME, Wessendorf KA, Peugh JL, Hood KK. 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: 10.1016/j.pec.2012.10.014.
- Karges B, Rosenbauer J, Stahl-Pehe A, Flury M, Biester T, Tauschmann M, Lilienthal E, Hamann J, Galler A, Holl RW. Hybrid closed-loop insulin therapy and risk of severe hypoglycaemia and diabetic ketoacidosis in young people (aged 2 to 20 years) with type 1 diabetes: a population-based study. The Lancet Diabetes and Endocrinology. 2024. DOI: 10.1016/S2213-8587(24)00284-5.
- Wentzell K, Strout TD, Laffel LMB, Vessey JA. Assessing diabetes distress in emerging adults with type 1 diabetes: development and validation of the Problem Areas in Diabetes, Emerging Adult version (PAID-EA). Canadian Journal of Diabetes. 2022;46(5):503-509. DOI: 10.1016/j.jcjd.2022.02.004.