The TEENs Study: glycemic control, family

status and emotional burden of Type 1

Diabetes (T1D) in a global sample of
children, adolescents and young adults
LORI M. LAFFEL1, CARMEN MAZZA2, CATHERINE DOMENGER3, VALRIE
PILORGET4, CHRISTOPHE CANDELAS4, THOMAS DANNE5, MOSHE PHILLIP6,
BARBARA ANDERSON7, RAGNAR HANAS8, SHERIDAN WALDRON9, ROY BECK10,
CHANTAL MATHIEU11, FRANOISE CALVI-GRIES12
1Boston,

MA, USA; 2Buenos Aires, Argentina; 3Sanofi Paris, France; 4Sanofi Chilly
Mazarin, France; 5Hannover, Germany; 6Petah Tikva, Israel; 7Houston, TX; 8Gothenburg,
Sweden; 9Birmingham, UK; 10Tampa, FL, USA; 11Leuven, Belgium; 12Nantes, France

Presenter disclosure: Lori Laffel

Research Support: Bayer Healthcare (grant support) DexCom,
Boehringer Ingelheim

Speakers Bureau: N/A

Board Member: N/A
Stock/Shareholder: N/A
Consultant: Johnson & Johnson, Eli Lilly, Sanofi, Novo Nordisk, Bristol
Myers Squibb, Menarini, Bayer Healthcare, LifeScan/Animas,
Roche Diagnostics, Oshadi, DexCom, Boehringer Ingelheim

Employee: N/A
Other: N/A

Study sponsored by Sanofi

Background The TEENs Study

Despite modern approaches to T1D management,

the majority of young patients fail to achieve the

recommended glycemic targets1,2
Additionally, diabetes management places

substantial burdens upon patients and families

There is a need to improve glycemic control,

optimize health outcomes, and limit burdens for

youth with T1D and their families globally
The TEENs study offers a unique, global perspective

of factors related to A1c and perceived burdens in

youth with T1D and their families
1DPV.

Diabetes Care 2012;35:806. 2T1D Exchange. Diabetes Care 2013;36:20357;

TEENs: largest, contemporary, cross-sectional

study assessing T1D management and
psychosocial parameters in 825 y/o
EUROPE

USA
25 sites
499 participants

Denmark/France/Germany/
Hungary/Italy/Portugal/
Romania/Russia/Slovenia/
Spain/Sweden
111 sites
2943 participants

Data from 5960

patients from
219 centers in
20 countries
MIDDLE EAST/
NORTH AFRICA

Algeria/Jordan/
Lebanon/Morocco
33 sites
1041 participants

LATIN AMERICA

Argentina/Mexico
27 sites
470 participants

INDIA
SOUTH AFRICA

18 sites
500 participants

5 sites
507 participants

y/o, years old

Aims and Inclusion Criteria

To describe associations of glycemic control
with family factors and perceived management
burdens in a global sample of youth with T1D
TEENs included:
Youth with T1D ages 825 years

T1D diagnosed <18 years of age

T1D duration 1 year
Youth receiving care at a clinic/hospital caring for

100 patients/year with T1D

No major change in insulin regimen during the last
3 months (pump
injection regimen)

Methods 1
Data collected from patients/families and centers by

survey, interview and medical record review

Patients recruited sequentially to avoid selection bias

in 3 age groups: 812 (25%)/1318 (50%)/1925 (25%)

A1c measured uniformly (ref: 46%)(A1cNow, Bayer)
A1c targets defined as:
<7.5%* (ISPAD) for ages 812 y/o and 1318 y/o
<7%** (ADA) for ages 1925 y/o

Factors related to A1c target attainment assessed by

multivariate logistic regression (adjusted for age & region)
*<7.5% , 58 mmol/mol; **<7%, 53 mmol/mol

Methods 2
Measurements:
Family characteristics (e.g. living arrangements, family
members involved in care*, diabetes-specific conflict**)

Emotional burden with validated surveys:

20-item PAID survey completed by 1325 y/o
assesses emotional responses to diabetes (e.g. anger,
distress, frustration with diabetes care)
18-item PAID-PR survey completed by

parents/guardians of participants aged 818 y/o

assesses perceived parental burdens of diabetes
Both scored 1100; higher scores = greater burden
Adapted from *Diabetes Family Responsibility Survey and **Diabetes Family Conflict Survey
PAID, Problem Areas in Diabetes; PAID-PR, Problem Areas in Diabetes, Parent-Revised version

Questions on family & diabetes

*

**

*Adapted from Anderson BJ et al. J Pediatr Psych 1990

**Adapted from Hood KK et al. Diabetes Care 2007

PAID and PAID-PR

PAID questionnaire
INSRUCTIONS: Which of the following diabetes issues are currently a problem for you?

Circle the number that gives the best answer for you. Please provide an answer for each question
Not a
problem

Minor
problem

Somewhat
Moderate serious
problem
problem

Serious
problem

1. Not having clear and concrete goals for your diabetes care? 0

2. Feeling discouraged with your diabetes treatment plan?

PAID-PR survey revised

The following statements describe diabetes-related issues that may or may not be a concern for
you. For each item, choose the ONE answer that best describes how much you agree or
disagree with that statement.
Agree

Disagree

1. I feel discouraged with my childs diabetes treatment plan

2. I feel scared when thinking about my child having/living

with diabetes

PAID:
PAID-PR:

Diabetic Medicine

Results Demographics
812 year olds 1318 year olds 1925 year olds
(N=5960)

(n=1724)

(n=2854)

(n=1382)

Mean SD or % Mean SD or % Mean SD or %

Female, %

49

48

49

Race (Caucasian), %

75

74

72

Overweight/obese*

16 / 13

15 / 11

23 / 6

T1D duration, yrs

4.5 2.7

6.6 3.8

10.6 4.9

A1c, %

8.3 1.6

8.6 1.9

8.4 1.9

32

29

19

At A1c target, %

*overweight: zBMI 85th<95th %ile or BMI 25<30 (for ages 1925)

obese: zBMI 95th %ile or BMI 30 (for ages 1925)

Results Demographics
812 year olds 1318 year olds 1925 year olds
(N=5960)

(n=1724)

(n=2854)

(n=1382)

Mean SD or % Mean SD or % Mean SD or %

Female, %

49

48

49

Race (Caucasian), %

75

74

72

Overweight/obese*

16 / 13

15 / 11

23 / 6

T1D duration, yrs

4.5 2.7

6.6 3.8

10.6 4.9

A1c, %

8.3 1.6

8.6 1.9

8.4 1.9

32

29

19

At A1c target, %

*overweight: zBMI 85th<95th %ile or BMI 25<30 (for ages 1925)

obese: zBMI 95th %ile or BMI 30 (for ages 1925)

Family Involvement in Diabetes

Youth-reported
Responsibility for selecting and
giving insulin*
Age group, years

Age group, years

Responsibility for checking and

interpreting BG levels*
812

1318

1925

25
50
75
% participants
Mostly parent

*in the past month

100

812

1318

1925

Both parent & youth

25
50
75
% participants
Mostly youth

100

Results Multivariate Analysis

Odds of Attaining A1c Target
adjusted for age group & global region
OR [95% CI]

Some conflict for

conflict
checking & interpreting
BG vs almost no conflict

0.64 [0.56, 0.74]

p<0.001

livingwith
with
Youth not living
parents
both parents vs living
with both parents

0.81 [0.68, 0.97]

p=0.019

0,5

Less likely to attain

A1c target

1,5

More likely to attain

A1c target

Results Emotional Burden

Lower
perceived
diabetesrelated
burden

PAID
self report

100
PAID/PAID-PR scores (mean SD)

Higher
perceived
diabetesrelated
burden

80

Youth A1c at target

70

Youth A1c not at target

PAID-PR
parent report

60
50
40
30

20
10
0

*
812 y/o 1318 y/o 1925 y/o
812 y/o PAID
1318
1925 y/o
(selfy/o
report)

**
812 y/o
1318 y/o
1925 y/o
812 y/o PAID-PR
1318
y/o report)
1925 y/o
(parent

No differences according to age group or target attainment

*PAID completed by youth 1325 y/o

**PAID-PR completed by parents of youth 18 y/o

Results Emotional Burden

Lower
perceived
diabetesrelated
burden

PAID
self report

100
PAID/PAID-PR scores (mean SD)

Higher
perceived
diabetesrelated
burden

80

Youth A1c at target

70

Youth A1c not at target

PAID-PR
parent report

60
50
40
30

20
10
0

**

*
812 y/o 1318 y/o 1925 y/o
812 y/o PAID
1318
1925 y/o
(selfy/o
report)

812 y/o
1318 y/o
1925 y/o
812 y/o PAID-PR
1318
y/o report)
1925 y/o
(parent

Parents perceived burden than teens

*PAID completed by youth 1325 y/o

**PAID-PR completed by parents of youth 18 y/o

Summary and Conclusions

In the TEENs study, most (72%) youth did not attain

A1c targets
Youth reporting diabetes-specific family conflict
around diabetes management were ~35% less likely
to achieve A1c target; similarly, youth not living with
2 parents were ~20% less likely to achieve target
For the 1318 y/o age group, parents reported
higher emotional burden than youth with T1D
Opportunities exist to improve glycemic control and
reduce the emotional burdens of youth with T1D
and their families

Acknowledgments
The multidisciplinary Steering Committee wishes to

thank:
The participants and their families, the Study
Coordinators, and Investigators from 219 centers
in 20 countries for their efforts and commitment
to this study
The Sponsor for the financial support to perform
this investigation