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Challenges and Opportunities in Diabetes Care

Unfulfilled promises: the barriers between what


we know and what we achieve

Where to start?
The Cure
The Cause
Metabolic control
Acute complications (hypoglycaemia, DKA)

Glycaemic variability
Chronic microvascular complications
Quality of life
Mental health

Diabetes distress
Family distress
Cognitive outcomes
Costs of care
Patient satisfaction
Patient empowerment
Discrimination

Equity of access to therapy


Life expectancy

For the purposes of this talk:


HbA1C is the primary outcome
First and foremost, 20 years after initial data were released, chronic hyperglycemia,
as measured by HbA1c, remains the primary modifiable mediator of the long-term
complications of type 1 diabetes
(Cefalu et al Diabetes Care 2014; 37:5-7)

Does
Knowledge

Evidence

Practice?

What have we achieved?


What do we know?
What do we do?

Where to from here?

What have we achieved?

1900
1920
1940
1960
1980
2000

2010- pumps with partial control loops

2004- smart pumps

2000- islet cell transplantation-Edmonton protocol

2000- first CGM

1998- resurgence of insulin pumps

1993- DCCT

1982- recombinant human insulins

1977- insulin gene cloned


1978- home BGL monitoring introduced

1973- low dose insulin infusion for DKA

1950- neutral protamine Hagedorn (NPH) insulin

1922- first treatment with insulin

Therapies and management- the hard yards of diabetes care

2020

2007- pumps coupled with CGM

2003- first long- acting analogue insulin

2000- blood ketone testing

1998- first rapid-acting analogue insulin

1986- insulin pens

1978- HbA1C monitoring introduced

1977- first insulin pumps

1955- structure of insulin delineated

1936- addition of zinc for longer action

Post- DCCT: initial success


Denver, USA, n=884
<18 yrs of age

Perth, Australia, n=1,335


<18 yrs of age

Chase et al Diabetes Care 2001; 24:430-434

Bulsara et al Diabetes Care 2004; 27:2293-8

The new millenium: were stuck!


(Multinational data)
Centres, number of
patients

Age group (yrs)

Mean
HbA1C

Source of data

21 centres
2269 patients

11-18

8.2%

Hvidoere Study Group, 2005

18 centres
1133 patients

<11

32 centres
3353 patients

10-16

de Beaufort et al Diabetes Care 2007;


30:2245-50

Hvidoere Study Group, 2009


de Beaufort et al Pediatr Diabetes
2013; 14:422-8

8.3%

AdDIT, 2012
Marcovecchio et al Diabetes Care
2014; 37:805-813

14 centres
358 patients

219 centres
5960 patients

8.0%

8-25

8.0%
(mean of
individual
median)

SWEET, 2012

8.5%

TEENs Study, 2014

Witsch et al P86 Pediatr Diabetes


2013; 14:82

Danne et al p47 Pediatr Diabetes


2014; 15:68

The new millenium: were stuck!


(National data)
Population

Age group (yrs)

Mean HbA1C

Source of data

US (2010-2012)

8.2%
8.2%
8.7%
8.4%
8.5%

Type 1 Diabetes Exchange Clinical


Network

US (2012-2013)

1-5
6-12
13-19
1-19
8-25

England (2010-2011)

<25

8.9%

National Paediatric Diabetes Audit


Report 2012

Wales (2010-2011)

<25

8.9%

National Paediatric Diabetes Audit


Report 2012

Denmark (2006)

<18

8.2%

National Diabetes Registry

Scotland (2002-2004)

1-15

9.2%

DIABAUD3

Germany/Austria (2009)

<20

8.1%

DPV

France (1998-2007)

5-19

8.2-8.4%

Aide aux Jeunes Diabtiques

Slovenia (2012)

<22

7.8% (median)

University Children's Hospital


Ljubljana, Ljubljana

TEENS Study 2013

National French data (Aide aux Jeunes Diabtiques)


obtained at diabetes camps 1998-2007
(707-896/yr 5-19 yrs age, total n = 7206)

BB: 13->52%

BD/TID: 50->25%
Pump: <1->13%
BD Premix: 33->7%

Redon et al Pediatr Diabetes 2014; 15:329-335

Linear model analysis showed no significant change in mean HbA1C over


the 10 yrs as a total group (8.2-8.4%) or by various insulin regimen subtype

Redon et al Pediatr Diabetes 2014; 15:329-335

The new millenium: in fact some of us are


going backwards!

Deterioration in average control


2003-2013 despite introducing:
More clinic attendance
Transition clinics
Multidisciplinary clinics
Increased pump use
Increased psychological support
Johnson et al, Diabet Med 2014; 31:227-231.

What do we know?

Hvidoere Study Group


26 centres, 23 countries

21 questionnaire responders represented


20 centres totalling:
13,842 patients

67.1 FTE medical staff


82.6 FTE DNEs
30.4 FTE dietitians
11.5 FTE psychologists

Funding environments
Subsidized (government/health insurance) insulin?

20/20

Subsidized (government/health insurance) strips?

20/20

Subsidized (government/health insurance) pumps?

20/20

Subsidized (government/health insurance) CGM?

10/20

Generally not a restrained funding environment

Questions:
What are the general barriers to achieving an HbA1C < 7.5%?

What are the specific medical barriers to achieving an HbA1C < 7.5%?
If you could change one thing in your diabetes care team or
practices to improve metabolic outcomes what would it be?

What are the general barriers to achieving an


HbA1C < 7.5%?
Patient behavior underpinned by things amenable to change through allied
health, mental health and clinic contact (eg diabetes knowledge, neurotic/affective
disorders etc)
Patient behavior underpinned by things NOT amenable to change through allied
health, mental health and clinic contact (eg parental education, family structure,
intergenerational issues etc)
Characteristics of diabetes medical care (eg pump vs MDI etc)
Characteristics of diabetes team care (eg DNE to patient ratio etc)
Other (please specify)
(Ranking response system 1-5,
max possible score = 105 for each response)

Hvidoere expert opinion


What are the general barriers to achieving an HbA1C < 7.5%?

100
90
80
70
60
50
40
30
20

10
0

Immutable patient Modifiable patient Characteristics of


characteristics
characteristics
team care

Characteristics of
medical care

Systematic review 1993-2010


70 papers

Immutable characteristics

Modifiable characteristics

Neylon et al, Diabet Metab Res Rev 2013; 29:257-72

Neylon et al, Diabet Metab Res Rev 2013; 29:257-72

Cross-sectional, multicentre,
international study n = 2062 (11-18 yrs)
Single parent family HbA1C +0.4%
Ethnic minority HbA1C +0.5%
Poor parental well-being HbA1C +0.3%
Adolescents and parents working together
as an effective team

Stronger
determinant than ...
Hoey Pediatr Diabetes 2009; 10:9-14

Cameron et al Diabet Med 2008; 25:463-8

However in the 2005 and 2009 Hvidoere studies demographic factors


did not influence centre ranking in terms of mean HbA1C:

2009, <11 yrs age

de Beaufort et al Pediatr Diabetes 2013; 14:422-8

2005, 11-18 yrs age

de Beaufort et al Diabetes Care 2007; 30:2245-50

Demography is not destiny for a centre in terms of outcomes

What are the specific medical barriers to more of your


patients achieving an HbA1C < 7.5%?
Non-adherence with insulin regimen
Non-adherence with diet
Non-adherence with blood glucose testing
Not enough subsidized access to insulin pumps
Not enough subsidized access to analogue insulins
Not enough subsidized access to continuous glucose monitoring
Not enough access to mental health support

Not enough access to diabetes allied health staff (diabetes nurse educators, dietitians etc)
Not enough access to doctors
Demographic and family issues over which the diabetes team have no control

Diabetes team structure and communication problems


Other (please specify)

(Ranking response system 1-12,


max possible score = 252 for each response)

Hvidoere expert opinion


What are the specific barriers to more of your patients achieving an HbA1C < 7.5%?
Tasks of self-care

250
200
150
100
50
0

Care delivery

Technology

Joslin, n=89, 10-15 years, cross-sectional study

Anderson et al J Pediatr 1997; 130: 257-65

High SMC

Mod SMC

Low SMC

Wysocki et al Diabetes Care 2003; 26:2043-47

Passive Pumping- no target = no benefit


HbA1c Trajectory
9.5
Active

9
8.5

Passive

Non-Adherent

8
%

7.5

* p <0.001

7
6.5
6
Pre-CSII

3-6 months

12-18 months

White et al, Diabetes Management 2013; 3;109-114

What do we do?
- Tasks of self care
- Care delivery
- Technology

Tasks of self care

1) We do not proactively manage the


commonest complication of T1DM in
childhood and adolescence and prioritise
resources to facilitate behaviour change

Patients in the tight-control group took three to five insulin injections a day or used
a pump with the goal of keeping their blood sugar as close to 6 percent as possible.
They tested their blood four to seven times a day and once a week checked it at 3
A.M. Perhaps most importantly, they worked closely with nurses, dieticians and doctors
who called them on the phone one or more times a week.
Christopher Sabin, 27, who works for Civic Forum Association, a not-for-profit
organization in Manhattan, was a patient in the tight control group at Albert Einstein
Hospital. "The team was the strongest part of the program," he said. "They are really
there to help us through the tough times."

Team able to offer mental health support directly


to parents or other care givers?

8/20 Hvidoere centres

2010: EFT resources per 100 patients and comparison to Australia


and Sweden (Swedish National Guidelines for Pediatric Diabetes 2008).
In Australia and NZ per 100
TIDM patients we have:

Per 100
patients

Sweden
per 100
patients

RCH per
100
patients

Nurse practitioners

0.08

Nurse managers

0.12

0.06

Administration assistants

0.31

0.06

Doctors

0.48

0.14

Diabetic educators (includes


nurse managers/practitioners)

0.67

1.0

0.37

Dieticians

0.19

0.5

0.22

Psychologists

0.08

0.2

0.0

Social workers

0.13

0.3

0.09

Exercise physiologists

0.0

Podiatrists

0.003

0.0

Cameron et al J Paed Child Health 2013; 49:E258-62.

Care delivery

2) We ask our educators to teach yet


do not teach them how to teach

Diabetes Nurse Educators receive formal educational


theory education?
9/20 Hvidoere centres

3) We make insulin regimens increasingly


physiological and more complex
- the paradox between best biology and adherence
(making tasks of self care easier)

Questionnaire responders represented


Insulin regimens:
2.7% twice daily pre-mixed

9.9% twice daily free-mixed


53.4% 3-5 injections per day
34.0% CSII

Increasing proportion of patients receiving MDI is not associated


with improved metabolic control
Holl et al, Eur J Pediatr 2003; 162:22-29

Scottish Study Group for the Care of the Young with Diabetes
1997-8 compared to 2002-4, children aged < 15 years

< 5% > 2 injections per day

43% > 2 injections per day

Diabet Med 2006; 23:1216-21

Is there a correlation between insulin regimen


and HbA1C in unselected cohorts of children and adolescents?

Yes
Slovenian National Registry Data
Dovc et al Diabet Technol Therap 2014; 16:33-40

?Multinational TEENs Study


Danne et al p47 Pediatr Diabetes 2014; 15:68

No
Danish National Registry Data
Nordly et al Diabet Med 2005; 22:1566-73
Svennson et al, Pediatr Diab 2009; 10:461-7

Scottish National Registry Data


Diabet Med 2006; 23:1216-21

Welsh National Registry Data


OHagen et al, Diabetes Care 2010; 33:1724-6

German and Austrian DPV Data


Rosenbauer et al Diabetes Care 2012; 35:80-86

US SEARCH for Diabetes in Youth for Study Data


Paris J et al Pediatr 2009; 155:183-9

French Aid aux Jeunes Diabtiques


Redon et al Pediatr Diabetes 2014; 15:329-335

Multinational Hvidoere data


Holl et al, Eur J Pediatr 2003; 162:22-29
De Beaufort et al Diabetes Care 2007; 30:2245-50
De Beaufort et al Pediatr Diabetes 2013; 14:422-428

Technology

4) We wait for technology to take us to


the next level
- removing the element of human behaviour

Hovorka, Cambridge
AP@home consortium
*Collaborating centres

Buckingham,
Stanford
Phillip, Tel Aviv
DREAM

*Collaborating centres

******
* *

Weinzimmer, Yale
PID

**
*

Rabasa-Lhoret, Montral

*Collaborating centres

** **
Medtronic, Northridge
PLGM/PILGRIM
* Collaborating centres

*
*

Damiano, Boston
BPGCS

Kovatchev, Virginia
DiAs- Diabetes Assistant
*Collaborating centres

ISPAD 2014

ISPAD 2024

5) We report our outcomes inconsistently

There is a floor effect when measuring HbA1C-

HbA1C measurements are positively skewed


Increasingly difficult to lower a low HbA1C

So, what to give


preeminence:
- median or mean?
- delta HbA1C or %
hitting target?

Population

Age group (yrs)

Mean HbA1C

Source of data

US (2010-2012)

8.2%
8.2%
8.7%
8.4%
8.5%

Type 1 Diabetes Exchange Clinical


Network

US (2012-2013)

1-5
6-12
13-19
1-19
8-25

England (2010-2011)

<25

8.9%

National Paediatric Diabetes Audit


Report 2012

Wales (2010-2011)

<25

8.9%

National Paediatric Diabetes Audit


Report 2012

Denmark (2006)

<18

8.2%

National Diabetes Registry

Scotland (2002-2004)

1-15

9.2%

DIABAUD3

Germany/Austria (2009)

<20

8.1%

DPV

France (1998-2007)

5-19

8.2-8.4%

Aide aux Jeunes Diabtiques

Slovenia (2012)

<22

7.8% (median)

University Children's Hospital


Ljubljana, Ljubljana

TEENS Study 2013

Audit of 345 pump patients with


retrospectively matched controls
Mean reduction in HbA1c = 0.6%
Maintained out to 7 years

Johnson et al Diabetologia 2013; 56:2392-2400

Where to from here?

If you could change one thing in your diabetes care team or


practices to improve metabolic outcomes what would it be?
Max possible score = 21 for each response

Hvidoere expert opinion

12
10
8
6
4

2
0
More usual Psychological Re-design
clinical care
input
initial
(time, visits,
education
staff etc)
(targets etc)

Intensify
insulin
therapy

More pumps More group


support

Deterioration in average control


2003-2013 despite introducing:

More clinic attendance


Transition clinics
Multidisciplinary clinics
Increased pump use
Increased psychological support

Johnson et al, Diabet Med 2014; 31:227-231.

T1DX mean HbA1C = 8.2%


DPV mean HbA1C = 7.4%

Maahs et al, Diabetologia 2014; 57:1578-85

ISPAD target < 7.5%achieved by 56% of DPV


ADA target < 8.5%achieved by 66% T1DX

Towards personalised care in T1DM......


what have we learned thus far?

William Osler, the Father of Modern Medicine:


It is much more important to know what sort of a patient
has a disease than what sort of a disease a patient has.

Plus ca change, plus cest la meme chose

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