Dr Tej Purewal Angela Nagle Royal Liverpool University Hospital

1. Dr Tej PurewalAngela NagleRoyal Liverpool University Hospital Young Adult/Transitional Diabetes

2. The Team DSN Dietitian Psychologist GP Consultant Chiropodist Parents/partners

3. DM T1 T2 T3

4. One message that we all need to remember is: Whatever the cause of your/your child’s diabetes and however you may feel, it is not your fault that it has happened and there is nothing you could have done to prevent it. 

5. Diagnosis Shock – that this can happen Denial – ‘This can’t be happening’. ‘I’ll wake up in the morning and it will have been a bad dream.’ Anger – ‘Why me/my child?’ ‘Why not someone else/else’s child?’ Sadness and grief – a sense of loss for the healthy child you had and for the expectations you had for your once healthy child. Guilt – ‘Is it something that I have done?’ ‘Could I have prevented it?’

6. Initial education We were also given some of the hard facts of diabetes: It was here forever and my little girl would have insulin injections for the rest of her life. We needed to keep ‘good control’ of her diabetes to avoid the complications in later life. it was a simple matter of injecting the right amount of insulin to balance with the food she could live a perfectly normal life with diabetes. I think that these last two statements were most confusing and unrealistic. They also had a long lasting and damaging effect. No doubt they were said to cheer me up! But actually they had just the opposite effect.

7. Expectations All too often we read about children, teenagers and adults with diabetes climbing mountains, sailing the seas and doing all sorts of fantastic things. I’m sure these articles are written with the best of intentions – to make us all feel better and let us know that our children can do anything, even with diabetes. Well they probably can, providing they take all the necessary precautions. Does this actually make us feel better? Do they, in fact, make us feel worse, more inadequate and perhaps even a bit of a failure because we, or our children, don’t achieve these things? They shouldn’t because the vast majority of people with or without diabetes don’t want to climb a mountain or sail across the Atlantic - they simply want to lead a normal everyday life just like their friends. This is just as great an achievement as climbing a mountain! Your child with diabetes attending its first party on its own, your teenager going to its first disco without going hypo or having blood sugars out of the roof – these are achievements that are just as important as climbing any mountain.

8. The role model Having said that there is a place for role models eg Gary Mabbutt who was captain of Spurs and the first person with diabetes to play football for England, is a good example. ‘If Gary Mabbutt can play football for England, then diabetes doesn’t have to stop me doing anything.’

9. Young Adults young adults with diabetes are a forgotten group, whose special needs seem to fall outside the primary focus of both pediatric and adult medicine

10. adult medicine culture is less forgiving of the behavioral and developmental struggles of the patient many parents are unnerved by the abrupt change in their role when their child "graduates" from the care of the more family-focused pediatric environment. The overwhelming changes in the first phase of the young-adult period (including graduating from high school, moving away from home, beginning new educational directions, and beginning to work and to be self-supporting) are often a distraction from the demands of managing diabetes.

11. What are some of the key priorities in the care of young adults with diabetes? develop a strong relationship that will ensure continued follow-up and that over time could be translated into influence to promote change in self-care behavior. to work in a partnership with the patient to formulate realistic and attainable treatment goals that will foster a sense of success, self-efficacy, and engagement in self-care. to ensure that high-risk adolescents with psychological problems have continuity of care into the young-adult period.

13. Preventable morbidity

14. Up to 50% of young patients with diabetes have reported difficulties with the transition to adult health care, 25%–35% are lost to medical follow-up in the first few years after they move into the adult system.

15. Informed choices Parent 1: has a son whose last two HbA1cs were 6.4 and 6.2 on twice daily injections – really good, yet the hospital want him to change insulins and go on to 4 injections a day. He doesn’t want to and his mum does not want to upset him when he is achieving good results without injections at school. So she’s putting her son’s wishes first and he is not changing to 4 injections a day. Parent 2: her 5 year old daughter was on 4 injections a day before starting school and now she has started, the school is refusing to take responsibility for doing the lunchtime injections and blood tests. There is an ongoing letter-writing battle……… Parent 3: her 9 year old daughter is using insulin analogues and a pump. She has chosen this option for her daughter because she believes that it will provide better control and will be less likely to cause future complications. Parent 4: has a son who is really unhappy about injecting at school on his 4 injections a day regime and after looking on the internet, she found that there are alternatives eg twice daily injections. She is quite angry that this choice has never been offered to her or her son.

16. Hypoglycaemia in adolescents Hypoglycaemia was induced in 20 adolescents who had diabetes for an average of 5.4 years. All of them had acute autonomic symptoms [classic warnings] The most common symptoms were hunger, tiredness, feeling weak, feeling warm and trembling. However the sweating response was absent in the adolescents

17. Parental distress affects children with diabetes Researchers in the US have found that behaviour problems in children with IDDM are not related to the medical diagnosis of diabetes, but to their mother’s depression and the parental distress at diagnosis. They investigated 114 children with diabetes, 107 children with juvenile arthritis and 88 healthy children. Arthritis Care and Research 1998; 11: 166-176

18. Practical aspects of managing diabetes in adolescents 1 Between 1988 and 1990 screening for HbA1c and albumin excretion rate in children with diabetes was carried out throughout Denmark, each study including 1000 patients. T despite 60% of these young people being on three or more injections per day, HbA1c levels were raised [average of 9.5-10%]. microlbuminuria was present in 4.3% and this was associated only with age and diastolic blood pressure. recent international study that showed the following results: HbA1c levels of 8.6% Severe hypos were related to a young age and low HbA1c. There were no significant differences in glycaemic control between adolescents treated with two, three, four or more injections per day.

19. Practical aspects of managing diabetes in adolescents 2 Those on four or more injections per day were using significantly more insulin. Girls on four or more injections had a higher BMI than girls on twice daily injections. Children under the age of adolescence on pre-mixed insulin had similar HbA1c levels to those on a combination of short and long acting insulin, adolescents had significantly better results with individual combinations of short and long acting insulins.

20. Family issues Quote from one Mum. " We didn’t used to argue very much and then only about one thing – money! Now we argue a lot more and about two things – diabetes and money!"

21. Siblings Quote from a sibling. "Often one of the first signs that my sister was hypo was that she would get bad tempered and argumentative – this often happened before Mum realised that she was hypo and so we would both get into trouble. Then the penny would drop and my sister was given sugary foods. She came around feeling happy again, totally unaware that we had been very angry with each other, but I remember being left still feeling angry with her. Even though I knew she’d been hypo she had still made me angry and a biscuit for me didn’t sort out how I felt!" 

22. Boys & Girls "Girls always seem more organised I find, and you know, she’ll take the little blood testing kit or whatever for going away, everything is packed and organised whereas Martin will, as we’re going down the road, say "Oh, did you get my insulin?"

23. "He tells people that he’ll be dead soon anyway so it doesn’t matter what he does, and that seems to be his whole attitude really….so I’ve given up now, I might as well not say anything….he just doesn’t want to do it, he doesn’t want to know….I feel like I’m watching him kill himself, and there’s nothing I can do about it, absolutely nothing".  study indicate that teenage boys are more likely than teenage girls to move between two extremes, with the majority managing very well and a small minority managing very poorly. As mothers are likely to be involved in helping boys manage, they are usually the first person to detect problems arising..

24. Girls’ management of diabetes It seemed more acceptable for girls to admit that they had diabetes girls were much more likely to tell teachers and their friends about it. In many ways the girls interviewed appeared – superficially at least- to manage diabetes well. For example, they were much more likely to follow the four injections a day regime often recommended by health professionals, which meant performing insulin injections at school.

25. Firstly, I found that teenage girls had often felt under pressure from health professionals to take responsibility for their diabetes management and mothers had little control over the situation. Susan’s mother said: "I have never once given her an injection from the age of eight – she has always refused any help, and I used to think that maybe sometimes this was far, far too much for her. It was (from the medical profession), "it’s your diabetes Susan, you’re in control, you’ve got to handle this, and you’ll be responsible", and I mean, she just sort of took this on board and that was the end of it". "My mum told me that the hospital stressed very much that my parents, they needed to let me have control –I was old enough to be able to do this myself….so as soon as I came out of hospital it was all down to me…. I showed I could cope in a way on the outside, but on the inside – the emotional side I couldn’t cope with it all, I didn’t really start coping until I left home".

26. Discovering Alcohol It lowers blood glucose levels and can lead to hypoglycaemia, especially during the night. can cause hypos for up to 24 – 48 hours afterwards causing unexpected hypos Drinking can mask signs of a hypo and lead to a severe attack. Friends can assume that the person is drunk when they are hypo. carbohydrate content of alcoholic drinks does not counteract the effects of the alcohol in lowering the blood sugar levels and should not be counted as part of the total daily carbohydrate intake. The effects of alcohol vary in different people and it is necessary for each person to discover how to drink alcohol and avoid hypoglycaemia. Low carbohydrate beers are often very high in alcohol and so should be avoided

27. AIM Keep them engaged Keep them coming to clinic Slow incremental change Education and agreeing goals Change from doctor led to patient consultations

28. www.teenagediabetes.co.uk

29. Insulin Therapy in Transitional Diabetes Care Angela Nagle Diabetes Specialist Nurse

30. Once Daily Not suitable for type 1 diabetes However…..can sometimes be used as a compromise in patients with eating disorders

31. BD Pre-mixed Insulin Often transferred from paediatric care on biphasic isophane insulin e.g. Mixtard 30 Difficult to manage 20-30 minute gap between injecting and eating Change to biphasic analogue insulin e.g. Novomix 30, Humalog Mix 25 BD regime fits well into ‘school hours’ but not flexible enough for altered activity level / food intake

32. TDS Insulin Conventional TDS: Novomix 30,Humalog Mix 50 Difficult for HCP’s to titrate And patients

33. TDS Insulin Unconventional: biphasic analogue, rapid acting analogue, long acting analogue For example Novomix 30 breakfast Novorapid tea-time Lantus nocte Helps with compliance Allows for some flexibility

34. Basal Bolus Gold standard? Some resistance to 4 injections a day Best regime for flexibility Allows self dose adjustment to accommodate changes in activity / food Works particularly well in those who carbohydrate count Enables patient to do as their peers

35. Pump Therapy Works well for some but it’s not for everyone Requires a lot of commitment Many of our young diabetics are ‘commitment-phobic’!

36. Case Study 1 17 year old girl Type 1 diabetes since age 12 Basal bolus regime of Novorapid and Lantus HbA1c 15.1% Weight 57.6kg BMI 21 New boyfriend!!!!!!! She believes she’s overweight Stopped taking most of her insulin Eating excessive sugary products e.g. 4 jam doughnuts for lunch Had urinary ketones at routine nurse led clinic appointment

37. Case Study 1 ‘diabulimia’? Initial management Advice on contraception Referral to Eating Disorder Clinic Compromised with once daily Lantus Risk of complications

38. Case Study 2 18 year old male Type 1 diabetes since age 15 Basal bolus Humalog and Lantus HbA1c 8.7% Lots of hypos And lots of highs New job – joiner Money, mates, alcohol! Missing some Lantus injections

39. Case Study 2 Physically active but not adjusted doses to accommodate this Binge drinking: substantial meal prior, supper before bed Suggest alternative time for Lantus Highs and lows probably alcohol related

40. Case study 3

41. Case study 4 17 yr female T1 8 months Hba1c 12% Seen with mum Thinks coping well Ketones + Losing weight No BMs Injects insulin alone

42. Precautions for alcohol alcohol affects people differently-you have to discover the precautions that are necessary for you, to avoid severe hypoglycaemia. Where possible eat a meal with your alcohol. If it is a drink in the pub, nibble crisps or other carbohydrate during the evening. Have a good meal before going out and monitor your blood glucose. give a lower dose of insulin to counteract the effect of alcohol. Measure blood sugars before going to bed. Always have a good snack, with both fast acting and slower acting carbohydrate, before going to bed. Monitor BMs more frequently for next couple of days

43. The successful transition of an older adolescent graduating from pediatric medicine to a new health-care provider can be challenging. Retrospective data from the Joslin Clinic population indicate that irregular clinic attendance is an important predictor for the ultimate development of diabetic nephropathy (4). Developmentally, older teenagers have a sense of "invulnerability" and tend to discount risks to their future health and the need for medical care (5). The nature of the relationship with the pediatric provider can be an important factor in this transition. If there is a strong, positive, and consistent bond with the pediatric team, it may difficult for some older teenagers to change "loyalties." Conversely, if there is a judgmental or fragmented experience with pediatric providers, it may be difficult for the older adolescent to initiate another "diabetes relationship."

44. -The traditional model of medical care, in which the physician prescribes the treatment plan, does not conform with the realities of living with a chronic illness, where the patient has responsibility of their own care on a daily basis . -a reorientation of the provider-patient relationship to a collaborative model, in which the provider serves as the patient’s guide in making informed choices about living with diabetes.