Transition Care in Diabetes Moving forward.
Dr Taffy Makaya
Consultant in Paediatric Endocrinology
& Diabetes
Oxford
Overview
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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.
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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:
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–
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
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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:
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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.