Implementing a structured education
programme for young people with
diabetes: lessons learned
Dr David Chaney
Senior Education Specialist IDF
Diabetes is a huge and growing problem…
382 million people have
diabetes
By 2035, this number will rise
to 592 million
Background
• Approx. 490,000 children around the world haveType 1
diabetes, with 77,000 new cases being diagnosed each
year (IDF, 2013)
• Complex regime of self-care practices in order to achieve
optimal glycaemic control and reduce potential acute and
long-term complications
• Self-management seen as
– restrictive
– behaviourally challenging
– complicated
Structured Education
• Education is the keystone of diabetes care and
structured self-management education is the key to a
successful outcome.
Definition of Diabetes Education:
“The process of providing the person with the
knowledge and skills needed to perform diabetes
self-care, manage crises and to make lifestyle
changes to successfully manage the disease”.
(ISPAD 2009)
Need for Structured Education
No structured education programme being delivered within
the UK specifically tailored to the needs of adolescents
(DoH, 2005)
• NICE (2004)
• Diabetes UK & DoH (2005)
– learning needs
assessment
– Structured agreed
written curriculum
– quality assurance
– Uses trained educators
– accreditation
– Is quality assured
– an identified curriculum
– Is audited
– trained educators
Purpose & Research Questions
• Purpose: To evaluate the effectiveness of a structured education
programme (CHOICE) about diet and insulin management for
adolescents between 13 – 19 yrs diagnosed with type 1 diabetes
• Research Questions:
– Does a structured diabetes education programme for
adolescents improve glycaemic control, perceived quality of life,
perceived empowerment and management strategies at 1, 3, 5,
12 and 24 months post intervention?
– Does improved ability to manage diabetes in adolescence lead
to weight gain?
What do Adolescents Want?
What Young People Want
‘You Can Do’
Independence
Be Positive
Need to be
Independent
Practical
Short
Real Life
Contact by Txt
Any room
will do
Why do they want these things
Striking the
Balance
Insulin
Balance of
Involvement
Trust
Reduce
Frustration
Parental Support
Remove the
Fear
Increase
Knowledge
It’s a Guessing
Game
Food
Removal of
Guilt
Take
Control
Reduce
Restriction
Eliminate
Confusion
Your on Your
Own
Isolation
Your Always
Different
Hospitals Involved
Altnagelvin Hospital
Royal Belfast
Hospital for Sick
Children
Craigavon Area Hospital
Royal
Victoria
Hospital
Daisy Hill Hospital
Ulster Hospital
Choice Study design
Randomisation
Usual Care
Invitation to
participate
Baseline Data
1 mth
3 mths 6 mths
12 mths
Intervention Group
Choice Education Programme
Text support
24 mths
Follow Up
• For 24 months and included
• Metabolic data
– HbA1c
– No. Hypo’s
– BMI / weight / height
• Psychosocial data
– Quality of Life
– Empowerment
– Self- management strategies
• (all pre-validated instruments)
Timetable
• Week 1
– Recap on diabetes
– Carbohydrate
estimation
– Own portion size
• Week 3
–
–
–
–
Dinning out
Hypoglycaemia
Blood glucose monitoring
Adjustment of insulin
dose
• Week 2
– Recap on Diet
– Hidden sources of
carbohydrate
– Correction dose
• Week 4
– Planning for physical
activity
– Travelling
– Family & Friends
– Drugs & Alcohol
Recruitment Figures
• Total target population:
– 400
• Total who agree to be approached:
– 270
• Total who agree to take part:
– 142
• Of Which:
– 67 Control
– 67 Intervention
– 4 allocated to intervention unable to undertake it
HbA1c
Participants
Min
Max
Mean
SD
HbA1c
5.60
14.20
8.88
1.48
Findings
• Metabolic
– No difference in HbA1c
– No difference in weight / BMI
– Increase in perceived control
• Psychological results:
– QoL better at months 3 and 6 then reverted
– No difference in Empowerment
– No difference in Self management Strategies
Lessons Learned
Poor Mathematical Ability
• Poor Maths:
– Carb counting
– Dose adjustment
– Leads to embarrasment
Participant Disruption
• See by parents
as needed but
not by teenager
– Poor
concentration
– Poor
engagement
Maintaining Motivation
• It’s never ending
• It’s complicated
• It’s challenging
• There’s no rest
• How would you
do?
Difficulty Recruiting
• Unwilling to attend
• Too many
competing
interests
– I know it already
– School activities
– Football
– Swimming
– Horse riding
– …
Poor Understanding of Nutritional
Concepts
• Some had not seen
many vegetables
• Some thought eggs
went in dairy
Already Established Poor Habits
• Need to catch
early after
diagnosis
• Essential to
promote active
engagement
from the
beginning
Age
• To mix or not to mix?
Implementation Issues
• Costs
• Resources
• Access
• Facilities
• Motivated staff
• Trained Staff
The Way Ahead
• CHOICE was adjusted:
– Tailored for all ages
– More involvement of parents
– Rolled out across Northern Ireland and Border
Counties of Republic of Ireland
– Integrated as routine care
Result
Six month analysis post amended CHOICE
Provided by: Dr Muhammad Sartaj
What Did You Most Enjoy?
What Did You Least Like?
Acknowledgements
• Roche Diagnostics
• Participants
• Families
• Diabetes Teams
• Everyone who
contributed
Steering Group
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Dr David Chaney (Nurse)
Prof Viv Coates (Nurse)
Dr Mark Shevlin (Psycholoy)
Prof Brendan Bunting (Stats)
Dr Dennis Carson (Consult.)
Dr Hilary Tennet (Doctor)
Ms Moyra Campbell (Nurse)
Ms Andrea McDougall (Dietit.)
Ms Fiona Clements (Nurse)
Ms Michelle Patterson
(Nurse)
Pro. Patrick Bell (Consult.)
Ms Una McElearn (Nurse)
Ms Oonagh McGlone (Nurse)
Mr Mark Kellet (Roche)
Dr Mary Morris (Psychologist)
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Dr Colin Gaston (Consult.)
Dr Sheila McGovern (Doctor)
Ms Arlene Long (Dietitian)
Ms Lorraine Rooney (Nurse)
Dr Roy Harper (Consult.)
Ms Nicky Fuller (Nurse)
Ms Lynne Thomas (Dietitian)
Dr Bernie Traynor (Consult.)
Ms Daphne Patterson (Nurse)
Dr John Lyndsay (Consult.)
Ms Ann Marie McDaid (Nurse)
Dr Maurice O’Kane (Consult.)
Dr Ken Moles (Consult.)
Mr Steve Williamson (Roche)
Ms Linda Irwin (Nurse)
Ms Frances Murphy (Nurse)
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Ms Lorraine
Bell (Dietitian)
Dr Chris
Corkey
(Consult.)
Ms Olivia
Creaney
(Nurse)
Ms Jeanette
Newell
(Nurse)
Ms Sally
Griffin (Nurse)
Ms Paula
Conal (Nurse)
Ms Pauline
Ingram
(Nurse)