Transition Care in Diabetes Moving forward. Dr Taffy Makaya Consultant in Paediatric Endocrinology & Diabetes Oxford Overview • • • • • • Background Why Transition matters Oxford Experience Where are we now Challenges Way forward Background • The UK has the world’s fifth highest rate of Type 1 diabetes mellitus (T1DM) diagnosis in children aged up to 14 years. • 24.5 per 100,000 children aged 0 to 14 in the UK are diagnosed with the condition every year. • Double the rate of France or Italy. IDF diabetes Atlas, 2012. • The incidence of type 1 diabetes in the UK has doubled every 20 years since 1945. • Incidence rates in the young have increased significantly: • Incidence has increased five-fold in the underfive age group in the last 20 years. JDRF 2014 • There are about 35,000 children and young people (CYP) with diabetes, under the age of 19, in the UK. TYPES OF DIABETES Diabetes UK, 2014 If we include adults: • 400,000 people with T1DM in the UK • Enough to fill Wembley Stadium 4 times over T2DM • In 2000, the first cases of Type 2 diabetes in children were diagnosed in overweight girls aged nine to 16 of Pakistani, Indian or Arabic origin. It was first reported in white adolescents in 2002. • Current obesity rates for children in the UK: 30% What does all this mean? • Increased incidence of T1DM. • More children diagnosed at a younger age, and living longer with T1DM. • Increased prevalence. • T2DM and obesity in children on the increase. • OVERALL INCREASE IN THE BURDEN OF DISEASE. • We are handing over more patients to the adults. Why does Transition matter • Adolescence is a difficult age • Diabetes through puberty poses particular strains on the risk of worsening control with – A move from parental supervision of care – Struggle for independence – Increased risk taking behaviours – Insulin resistance as part of puberty – Accelerated development of early complications. • Invariably control deteriorates for the majority of patients during this period. • Successful transition to an adult diabetes team is a significant component of care in adolescents with T1DM. Oxford Experience ‘Current methods of transfer of young people with Type 1 diabetes to adult services’. Kipps et al. Diabetic Medicine. 2002;19:649–654. Aims: To determine the efficacy and patient perception of various transfer procedures from paediatric to adult diabetes services. Methods: Comparison between four districts in the Oxford Region employing different transfer methods, by retrospective study of case records and interviews of patients recently transferred from paediatric diabetes clinics. The main outcome measures were • age at transfer, • clinic attendance rates, • HbA1c measurements • questionnaire responses. Table 1 Details of clinic transfer procedures in each district: District Transfer method A Transfer from a paediatric clinic to an adult clinic. B Transfer from a paediatric clinic to a young adult clinic held in a diabetes centre at a different hospital. C Transfer from a paediatric clinic to a young adult clinic held in the same hospital; patients were introduced to the adult physician in the paediatric clinic prior to transfer. D Initial move from a paediatric clinic to an adolescent clinic held in the same diabetes centre (run jointly by the paediatrician and adult physician) before transfer to the adult clinic. Results: 229 subjects (57% males) > 18 years old in 1998 and diagnosed with Type 1 diabetes < 16 years of age between 1985 and 1995, identified from the regional diabetes register. The notes audit was completed for 222 (97%) and 164 (72%) were interviewed by a single research nurse. Mean age at transfer was 17.9 years (range 13.3– 22.4 years). • There was a high rate of clinic attendance (at least 6 monthly) 2 years pretransfer (94%), but this declined to 57% 2 years post-transfer (P < 0.0005). • There was large interdistrict variation in clinic attendance 2 years post-transfer (29% to 71%); higher rates were seen in districts where young people had the opportunity to meet the adult diabetes consultant prior to transfer. • The importance of this opportunity was confirmed by questionnaire responses on interview. • Mean HbA1c during the 2 years pretransfer was much higher in patients who subsequently failed to attend hospital clinics 2 years post-transfer or had moved to GP care ( and these were higher in Groups A & B) compared with those patients regularly attending adult clinics. • More patients in districts C and D expressed overall satisfaction with their transfer compared with patients in districts A and B Reflection and Change: Children’s Hospital Adult Hospital Pre-2001 –Transfer from a paediatric clinic to a young adult clinic held in a diabetes centre at a different hospital Regular clinic attendance rates (at least 6 monthly) at 1 and 2 years post-transfer by district. Post-2001 – A ‘Transition clinic’ was introduced and the Paediatric Team started to see patients in the Adult Hospital from the age of 17 and then transferred by letter to adult consultant. Before introduction of transition clinic After introduction of transition Clinic Confidence interval Clinic Attendance at least 6 monthly 29% 61% 15.8 to 47.45 P=0.0002 Mean HbA1c 2 years post transfer 9.8% 9.1% Not possible Summary • The introduction of a paediatric ‘Transition Clinic’ in the adult out-patient setting markedly improved the attendance at the young adult diabetes clinic following transfer. • Despite this, poor glycaemic control continued to be a concern. ‘Care of adolescents and young adults with diabetes – much more than transitional care: a personal view’. Peter H Winocour. Royal College of Physicians 2014. ‘There is increasing recognition that T1DM acquired in childhood and adolescence requires a sophisticated approach that facilitates better self-management through adherence to generic principles in managing chronic disease in this age group, allied to the complex clinical needs of managing T1DM and related conditions. Transitional care should be seen as a process over time supported by both paediatric and adult diabetologists within a multidisciplinary team, given the complementary skills that can be brought to bear’. Why is good clinic attendance and good HbA1c control so important? Diabetes Control and Complications Trial (DCCT): The trial conclusively demonstrated tight glycaemic control, with a maintained mean HbA1c of 53 mmol/mol (7%) compared with 75 mmol/mol (9%) in the conventionally treated group; such control led to significant reductions in the evolution and progression of microvascular complications over the 9 years following the initiation of the trial. The Epidemiology of Diabetes Interventions and Complications (EDIC) study Follow up over the subsequent 9 years while the two groups were no longer differentiated by glycaemic control (mean approximately 65 mmol/mol [8.1%]). Over that period, there was further separation of the two groups in terms of progressive vascular damage. At 17–25 years, these differences persisted and, in some cases, were even more apparent, especially for cardiovascular outcomes. • Essentially – the body remember those years of good control. • This has an impact on long-term health outcomes. • HCP need to ensure good transition care, limit drop-out rates and ensure good glycaemic control. Where are we now? • The Oxfordshire Paediatric Diabetes Team currently sees patients at Oxford Children’s Hospital (CHOX) and Horton Hospital (HH). • Total : 345 patients • Aged between 1-19 years. • 97 of these are aged 16 or over (28%). • Transition clinics now run at both sites. CHOX Transition – since 2001. • • • • Held at OCDEM Centre at the Churchill Hospital. Patients moved across at age approx 17 years 3 monthly clinic f/u. (Clinic runs monthly). Paediatric Team: – – – – Consultant Speciality doctor X2 PDSNs Dietician • Adult Team – Consultant (or DSN – not both). • Usually seen till age 19, then moved onto YAC. HH Transition – since 2014 • • • • Held at HH Paediatric OPD Patients moved across at approx 16 years 3 monthly clinic f/u (clinic runs 3 monthly) Paediatric team: – Consultant – PSDN – Paediatric Dietician • Adult team – Consultant – DSN – Dietician • Usually seen for till age 19, then moved onto AC. Education programmes • Year 10 evening • Alton Towers Day trip 16-18 year olds. Challenges • HbA1c control still sub-optimal in that transition age group • Still losing some patients from f/u • Not always easy to engage the adolescents • More adult support needed at Oxford transition clinics HbA1c by Age, 2012 HbA1c 10.00 boys girls 9.50 9.00 8.50 8.00 7.50 7.00 6.50 6.00 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 age Way forward • Important to look at models that work. • And look at ways of adopting the things that work and improving local services. The 10 P’s • An expert working party has produced recommendations and core measures for successful transitional diabetes care. The guidance defined 10 key aspects (‘the 10 Ps’) that needed to be addressed: – – – – – – – – – – the person with diabetes the parent (carer) partnership with the health care team participation of the individual in self management professional training planning of transition and transfer and the process of transition a place identified for clinic care that is appropriate effective input to pumps pregnancy pre-existing conditions. • Best Practice Tariff covers care of CYP up to age 19 years. • Resources can therefore be used for CYP in the transition age group with increased focus on improving Transition Care. • Physicians looking after patients aged 16-19 are being encouraged to claim from BPT. Resources • Availability of financial resources allows for investment into services: – In Oxford the appointment of new medical staff has allowed the HH transition clinic to be established. – Increased Psychology time has meant greater support for patients in transition, particularly those experiencing difficult control. – There is a plan for increased adult nursing time, to allow regular attendance at the CHOX/OCDEM Transition Clinic. Clinic Structure • Plan to start Transition process earlier: around 16.5 years (can be based on individual maturity). • Paediatric & Adult members to see patients at each appointment. • Longitudinal Clinic – over approximately 12-18 months. • Transfer to YAC when appropriate. Improving engagement • Holding a focus group to get the CYP to tell us what they feel is important and how we can get things right, what we can improve. • Greater input from Adult DSNs for out-of-clinic f/u and contacts. • Changing the structure of our education Days, Took part in the Declining Education Study • Recognising the importance of social media: Blogs, Twitter Current Diabetes Reviews, 2014;10(5): Editorial: Mini-Thematic Issue: Social Media and Smart Technology in Diabetes: - One Small Step…..One Giant Leap. Tafadzwa Makaya. Pg 283. Social Media for Diabetes Health Education - Inclusive or Exclusive? B. Rani Pal. Pg 284 – 290. The Bid to Lose Weight: Impact of Social Media on Weight Perceptions, Weight Control and Diabetes Leah Das, Ranjini Mohan and Tafadzwa Makaya. Pg 291 – 297. Self-management of Diabetes in Children and Young Adults Using Technology and Smartphone Applications Siobhan Sheehy, Georgia Cohen and Katharine R. Owen. Pg 298 - 301 Training • Important to have a focus on Transition – with a transition lead. • Education of team members: Transition: Closing the Gap between Child and Adult Services Level 6 (Degree level) and Level 7 (Masters level) 20 Credits. University of York. NHS funded places available on this course. Please visit www.york.ac.uk/healthsciences/cpd/funding for the latest information. Self funders are also welcome. Summary • Increased incidence of diabetes in the paediatric population • Need to improve outcomes during transition – Clinic attendance – HbA1c – Patient satisfaction. • We need to adjust to the needs of the population: – involving CYP in the decisions around their care – by increasing staffing – Better training of staff • Improving the service –By networking and learning from each other. –Peer review, NPDA, Diabetes Networks.