Determinants of diabetes distress in

adolescents with type 1 diabetes

ISPAD 2014, Toronto, Canada
Gun Forsander, The Queen Silvia Childrens Hospital, Sahlgrenska
university Hospital, Gothenburg, Sweden
Co-authors: Ulf Samuelsson, Ina Tapager, Mette Bgelund

Disclosure

The study was supported by an unrestricted grant from NovoNordisk

Objectives
When children with diabetes become adolescents, many experience difficulties in controlling their
diabetes according to recommendations and in integrating diabetes treatment in their lives.
The national pediatric diabetes registry SWEDIABKIDS database covers all patients (N=8000) ages 018 y with diabetes in Sweden.

In 2013, mean HbA1c for all patients was 59.3 mmol/mol (7.6%)
Proportion of patients with HbA1c < 57mmol/mol (7.4%):
0-6 years
75%
7-11 years
60%
12-17 years
37%

Objectives
The objective of the TODS (Teenagers On Diabetes Sweden) study was to conduct a national survey
to gain a better understanding of the main drivers and barriers to provide optimal treatment among
adolescents with type 1 diabetes.
The focus of the present analysis was to examine the level of diabetes-related distress and factors
associated with distress.

Methods
In 2013 all adolescents born in 1995, 1996 and 1997 (ages 15-17.99) with type 1 diabetes (N= 2112)
were invited to anonymously complete an online questionnaire. This was accessed through a
website designed specifically for the study (www.tods-study.se)
The questionnaire was developed and validated in collaboration with pediatric diabetologists and
survey experts
We applied two Discrete-choice elicitation modules (WTP); one concerning the clinical effects of
the medicine and the other concerning convenience features regarding the way the medication is
taken
A diabetes distress scale (DDS17) questionnaire was included in the survey

Determinants were identified in a regression analysis.

Participants
The survey was completed by N= 453
adolescents (21.4%)

The survey asked fourteen questions concerning the distress of diabetes

These are divided into three groups, focusing on self-management, emotional
issues regarding living with diabetes and the regimen distress variables from
DDS17
In all three categories, girls score significantly higher than boys, especially
concerning the emotional issues which compresses five questions

Results - Gender differences in diabetes distress

The distress instrument consists of statements with a possible score ranging from 1 (Not
a problem) to 6 (A very serious problem).

Results Parental support matters

*P-values from OLS regression controlling for multiple other factors: p<0.001 and p=0.0245 for girls.

Results - Distress is correlated with diabetes control,

smoking and diet
Diabetes distress is significantly higher for patients with a higher level of HbA1c (p<0.001) and for
those who do not know their HbA1c-value (p<0.001).
Reporting more than 3 instances of too high blood glucose per week is correlated with higher
distress (p<0.001).
Reporting smoking and unhealthy eating habits are correlated with higher distress scores
(p<0.001, p=0.01).

Higher BMI is associated with higher distress for boys (p=0.15 for all but p=0.008 for boys)

Results Distress is correlated with fear of HG

Fear of hypoglyceamia is also associated with

higher distress scores (beta=0.07, p<0.001).

Conclusions
This national survey shows that actively involved family and friends may reduce diabetes distress
Also, female adolescents in particular are more vulnerable, as are adolescents with unhealthy
lifestyle choices
Extra focus and support from the whole diabetes team must be put on these groups of patients