Transcript Delivering Structured Education for patients with Diabetes: Challenges and Opportunities Sean F.

Delivering Structured Education for patients
with Diabetes: Challenges and Opportunities
Sean F. Dinneen, MD, FRCPI
Senior Lecturer in Medicine
NUI Galway
Health Services Research Seminar
November 15th, 2005
Overview of Talk
• What is TPE?
• What is an SEP?
• Who are DAFNE, BERTIE, DAFYDD and
DESMOND?
• What are PAID, HADS and EQ5D?
• Who in the world is Dawson Stelfox?
Therapeutic Patient Education
“TPE should enable patients to acquire and
maintain abilities that allow them to optimally
manage their lives with their disease.
It is designed to help patients and their
families understand the disease and the
treatment, cooperate with health care
providers, live healthily, and maintain or
improve quality of life.”
WHO definition
The “Founding Fathers” of TPE
• Jean Phillipe Assal,
Geneva; introduced the
concept of TPE based
(partly) on personal
negative experiences
• Michael Berger (19442002), Dusseldorf;
implemented the first
structured education
programme for patients
with Type 1 diabetes
DAFNE
Dose Adjustment For Normal Eating
A new approach to Type 1 diabetes
Collaboration between
Prof. Stephanie Amiel
Natalie McKeown
Helen Reid
Eileen Turner
Dr. Simon Heller
Sue Beveridge
Carla Gianfrancesco
Val Scott
Carolyn Taylor
Dr. Sue Roberts
Peter James
Lindsay Oliver
Sue Robson
Jackie Rollingson
Gill Thompson
Frances Wright
Prof. Clare Bradley
Jane Speight
funded by
Dr L N Newton
Prof. D P Newton
Registered charity no. 215199
DAFNE Centre Training Programme
2 Doctors &
2 DSNs & 2 Dietitians
or
3 DSNs & 1 Dietitian
Structured observation week
in DAFNE 'trainer' centre
(5 days)
DAFNE Educators Programme (DEP)
2 day Training Workshop
DAFNE Doctors Programme (DDP)
1 day Workshop
Peer-reviewed 1st course
(5 days)
DEP
1 day Follow-up Workshop
Collaborative &
'Quality Circle'
Monday
Tuesday
09 - 11 a.m.
Wednesday
Thursday
Friday
9.00 a.m. - 9.30 a.m. - Discussion of individual blood glucose levels
9.30 - 10.15 a.m.
9.30 - 10.30 a.m.
9.30 - 11.15 a.m.
9.30 - 10.30 a.m.
Introduction
Discussion contd.
Introduction to insulin dose Dose Adjustment practice
adjustment
Nutrition
What is Diabetes
Tea/Coffee
10.30 - 12.30 p.m.
11.15 - 12.30 p.m.
10.45 - 12.30 p.m.
Nutrition
Insulin : types, actions,
timings
Injection technique
1.30 – 2.45 p.m.
1.30 – 3.00 p.m.
Diabetes control
Nutrition
Monitoring of blood glucose
levels and ketones
3.00 – 5.00 p.m.
Dose adjustment planning
3.15 - 4.30 p.m.
Hypos
Dose adjustment practice
10.45 - 12.30 p.m.
11.30 - 12.30 p.m.
Sick Day rules Dose adjustment
Pregnancy & contraception
& other issues
LUNCH - Discuss individual blood glucose levels
2.00 – 3.00 p.m.
1.30 – 3.00 p.m.
Long term diabetes health
Nutrition
problems: prevention and
treatment
Tea/Coffee
3.30 – 4.30 p.m.
Diabetes annual review:
getting the most out of your
clinic appointments
3.15 – 4.30 p.m.
Exercise
Discuss individual blood glucose levels 4.30 - 5.30 p.m.
2.00 - 3.30 p.m.
Quiz
Evaluation
Departure
DAFNE: the Trial
UK DAFNE Study
HbA1c (%)
10
9
8
7
6
Beginning
Immediate DAFNE
Delayed DAFNE
6 months
12 months
n=144 participants in 3 centres
Results: Weight
85
Weight (kg)
80
75
70
65
60
Beginning
6 months
12 months
Immediate DAFNE
Delayed DAFNE
ns
Results: DTSQ
total satisfaction
36
30
24
18
12
6
0
Beginning
6 months
12 months
Immediate DAFNE
Delayed DAFNE
p<0.0001
3.0
Results: ADDQoL
present QoL
2.5
2.0
1.5
1.0
0.5
0.0
Beginning
6 months
12 months
Immediate DAFNE
Delayed DAFNE
p<0.01
Participants’ Comments
 I have realised how haphazard things have been since I
was diagnosed
 How have I managed to survive before this week
 I’ve learnt such a lot in a short space of time – and I’ve
had a bit of a laugh as well!
 Everyone should be offered the opportunity to do this!
DAFNE Health Economics
Shearer et al. Diabetic Medicine 2004;21:456
DAFNE Health Economics
Shearer et al. Diabetic Medicine 2004
The DAFNE Collaboration
(as of June 2005)
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13 Centres in England
5 Centres in Scotland
3 Centres in Ireland (North and South)
2 Centres in Australia
Co-ordinating Centre in North Tyneside
An Executive, a Research Group and an
annual Collaborative Meeting
Oxford English Dictionary
• regime:
• method or system of government, e.g., a
socialist, a fascist, etc, regime
• regimen:
• a set of rules about diet, exercise, etc aimed
at improving somebody’s health and
physical well-being
Type 1 Education Network
Inaugural Meeting under the auspices
of Diabetes UK
Bournemouth
2nd May, 2003
Type 1 Education Network
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In attendance:
31 people from 19 centres
7 different education programmes
“Observers” from Scotland
Representative from Diabetes UK
Programme Presentations
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Robert Dyer
Janet Sumner
George Oswald
Iain Cranston
Sean Dinneen
Joan Everett (for)
Emma Jenkins
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Torquay
Oxford
Guernsey
Portsmouth
DAFNE
York
Bournemouth
Type 1 Education
How Does It Work in
Bournemouth?
Joan Everett, Emma Jenkins, Fiona
Martch, David Cavan
Process
• Started in 1999 , based in Dusseldorf model
• Four weekly sessions 1 – 7pm or 9am-3pm including
meal .
• Flexible timetable covering all aspects of diabetes
management
• Intensive training in carbohydrate counting each
week
• Patients complete food and insulin diary for four
days between each session - used to train patients in
insulin dose adjustment
Experience to date
• 80 participants
• Age 13-79 (includes teenage group)
• Offered to anyone who wants to improve selfmanagement skills
• Offered to all newly-diagnosed (6 months after
diagnosis)
• 25 within 1 year of diagnosis
70% of all newly-diagnosed in 2000
Diabetes NSF Standard 3
Empowering people with diabetes
“people with diabetes should receive a
service which encourages partnership in
decision-making, supports them in
managing their diabetes and helps them
adopt and sustain a healthy lifestyle”
Structured Education Programme
• Key Criteria
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A Curriculum
Trained Educators
Quality Assurance
Audit
DAFNE in Ireland
An Exploratory Meeting
Novo Nordisk Head Office
2-3 Upper Pembroke Street
Dublin 2
July 29th, 2005
The Funding Opportunity
• Health Services R&D
Awards 2005
• PI must be based in an
Irish health agency
• Collaboration outside
of Ireland encouraged
• Euro 250,000 per year
for up to 5 years
• Call: June 16th 2005
• Submit: Sept 9th 2005
Unanswered Questions
• Is it for everyone?
• Does it have to be M-F, 9-5?
• What characteristics identify those who do
well/those who do poorly?
• How best to follow-up the DAFNE graduate
• Impact on the Clinical Service
UK DAFNE Study
HbA1c (%)
10
9
8
7
6
Beginning
Immediate DAFNE
Delayed DAFNE
6 months
12 months
n=144 participants in 3 centres
Proposed Irish DAFNE Study
HbA1c (%)
10
9
8
7
6
Beginning
DAFNE+usual F/U
Non-DAFNE
DAFNE+group F/U
6 months
12 months 18 months
n=336 in 4 DAFNE centres
Complex Intervention MRC Guidance
Campbell M, et al. BMJ 2000;321:694-696
Defining the Intervention
Those individuals assigned to the group follow-up arm of the
study will receive their follow-up in the original group in which
they underwent DAFNE training. Visits will be arranged as close
as possible to 6, 12 and 18 months after the course and will be
facilitated by one of the group’s original 2 DAFNE educators. A
curriculum developed in the first phase of the project will be
used. An experienced DAFNE educator should be able to
combine delivery of a curriculum with a patient-centred
approach to priority setting and problem solving. Individual
groups will be encouraged to determine their own priorities and
select from a range of DAFNE self-management skills review
sessions. Peer support and “expert patient” participation will be
explored in these sessions.
Study Outcomes
• Primary Outcomes: HbA1c and frequency of
severe hypoglycemia
• Secondary Outcomes: Weight,
psychological measures of wellbeing/QOL
(e.g., ADDQoL, PAID, EQ-5D, etc)
• Qualitative research
• Health Economic analysis (including
utilisation of services by different groups)
Study Site Selection
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WTE Dietitian, DSN, Consultant
Facilities for Group Education
Familiarity with DAFNE programme
Geographic spread
“Enthusiasm” ??
Likelihood of delivering the goods!
Irish Everest Expedition 2003
• 4 men + 2 women
• commemorating the
first ascent in 1953
• successful summit bid
achieved at 09:50
(Nepalese time) on
May 22nd, 2003
• highest ever puc fada!
www.irisheverest2003.com
A collaborative group in the UK that aims to
develop a new approach to delivering
systematic education for patients with Type 2
diabetes
Theoretical Foundations of DESMOND
• Education needs to deliver specific timely
messages
• Individuals have ‘personal models’ which
can be inaccurate
• Leventhal’s Self Regulation Theory
provides a useful framework
• Dual Processing Theory can help us to
consider how people make sense of
information
Theoretical Foundations of DESMOND
• ‘Threat messages’ need to be followed by the
opportunity to develop action plans.
• Depression will impact on an individual’s
capacity to self manage.
• Self Determination Theory tells us that it is
essential to set your own goals.
• Goals need to be behavioural and specific.
• Self efficacy is essential to attaining goals
The DESMOND Philosophy
• Each individual is responsible for the day to day management
of their diabetes.
• People make the best possible decisions for themselves to
achieve their best quality of life.
• All the barriers to self management lie in the individuals
personal world.
• The consequences of self management decisions impact solely
on them, their family and carers
• Acquiring new information is not easy.
• Many factors influence self management and we must create
the environment to address these
So what does this mean in reality?
• There are no ‘lectures’
• Everyone is encouraged to discuss their thoughts feelings
and barriers
• Open questions are used to encourage learning
• Understanding is checked, personally relevant questions are
addressed
• People completed their own ‘Health Profile’
• The trainers are warm , empathic , non judgemental and
person centred
• Goals and action plans are developed by the individual
DESMOND Curriculum
(6 hrs of contact time)
Housekeeping
The patient story
What diabetes is
Main ways to manage diabetes
Diabetes consequences/ personal risk
Monitoring and taking action
Food choices
Physical Activity
Stress and emotion
Screening/ annual clinics
5%
10%
5%
10%
15%
10%
20%
5%
5%
5%
Developing a personal plan
10%
DESMOND - Time Frame for RCT
Beginning of
June 2004
Beginning of July
2004 to end of
Aug2004
Oct 2004
Participating PCTs
confirmed
Practices Recruited
Intervention Arm:
Patient diagnosed with type 2
diabetes
Patients Recruited
Given patient information leaflet,
What is DESMOND leaflet, baseline
Questionnaire
Patient contacted by DESMOND
team
Patient sent postal information
End of Oct 2004
to end of Sept
2005
Randomised Control
Trial begins
Data Collection
Patient attends DESMOND,
consent taken & baseline
Questionnaire collected – takes part
in intervention
Biomedical data
collected at
baseline, 4, 8 and
12 months
Control Arm:
Patient diagnosed with type
2 diabetes
July 2005 to OCT
2006
Given patient information
leaflet, baseline questionnaire
& Consent form
Data analysis
Nov 2006
© The DESMOND Project
Publication
Patient given an
appointment, gives Consent
and returns completed
questionnaire – receives
routine care
Follow –
up
Questionnaire
data collected at
baseline, 4, 8 and
12 months
Primary Care Trusts involved in DESMOND
Bath & North East Somerset PCT
Bournemouth PCT
Cheltenham & Tewkesbury PCT
East Hampshire PCT
Eastern Leicester PCT
Fareham & Gosport PCT
Greater Peterborough PC
Partnership
Ipswich PCT
Newcastle PCT
Northampton PCT
North Sheffield PCT
Northumberland Care Trust
South & East Dorset PCT
South Leicester PCT
Southwark PCT
The Goal of Education
• Competence:
• what individuals know or are able to do in
terms of knowledge, skills and attitudes
• Capability:
• the extent to which individuals can adapt to
change, generate new knowledge, and
continue to improve their performance
Fraser, Greenhalgh. BMJ 2001;323:799