How do young people with T1DM

experience transition
from pediatric to adult health care?
K. Hodnekvam, H.Iversen, T.W.R.Hansen,T.Skrivarhaug
Telemark Hospital, Skien ,Norway
Norwegian Knowledge Centre for the Health Services
Oslo University Hospital
Norwegian Childhood Diabetes Registry
Oslo Diabetes Research Centre

ISPAD Toronto 2014

ISPAD Toronto 2014

Presenter Disclosure Information

Disclosed no conflict of interest.

ISPAD Toronto 2014

Background 1
A quality improvement project on transition
Initiated by the Norwegian Pediatric Society
Organized under the Norwegian Childhood
Diabetes Registry (NCDR)

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Background 2
Quality improvement project
National, population-based cohort study
Mixed Method
1) Qualitative data ( focus group interviews)
2) Quantitative data (national survey)

3) Quality indicators (from medical journals)

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Objectives
To identify the experiences of young people with
T1DM on transition from pediatric to adult health
services through focus group interviews
To use qualitative data from the analysis of focus
group interviews as a supplement in developing a
questionnaire for the national survey

ISPAD Toronto 2014

Methods
Focus groups Inclusion criteria

T1DM more than 2 years before transfer

Adult health care for 1.5 4 years
Mean HbA1C comparable with mean HbA1C
of the whole age group as registered in NCDR
Male:female= 1:1
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Methods
Focus groups Recruitment
Invitations sent by post to 80 young adults selected
by the NCDR according to inclusion criteria
Reminders sent 2 times
16 gave a written consent

8 showed up!

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Methods
Characteristics of Focus group participants

Gender

M:F=1:1

Mean age

20.7 yrs ( 18.5 21.9)

Mean diabetes duration

10.3 yrs ( 7.4 19.2 )

Mean age at transfer

18.2 yrs ( 16.3 19.4)

Mean HbA1C*

8.6% (6.7 10.2)

Registered at the last annual ctrl in the

Norwegian Childhood Diabetes Registry before
transfer

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Methods
Focus groups Interviews

3 groups (Nov 2013- Jan 2014)

Neutral surroundings
Facilitated by moderator
Sound recorded by observer KH
60 minutes per interview

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Methods
Focus groups Interview guide
How are young people with diabetes being
prepared for transition from pediatric to adult
care?
What are the experiences from adult health
care?
What are your suggestions to improve
transition to adult care ?

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Methods
Focus groups Analysis
All interviews were transcribed verbatim

Systematic text condensation :

identify and code units of meaning
develop categories
reorganize the text

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Results
Focus groups Main themes

Continuity and Availability

Competence and Confidence
Role of parents
To be seen as an individual or not
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Results Focus groups

Theme 1) Continuity and availability
Not well prepared for transfer just sent me over
The gap between services I did not belong anywhere
In pediatric care: Continuity and a sense of personal relation
I always had the same doctor and nurse, they knew me well

In adult care : Lack of continuity and fewer consultations

it is frustrating to have to tell the whole story again to new
nurses I dont even remember the name of the doctor
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Results Focus groups

Theme 2) Competence and Confidence
Less action taken in adult care when needed I really had problems and they were not available for me ..
Less focus on individualized insulin treatment- my insulin
pump profile has not been looked into by any of the health
personnel after transfer

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Results Focus groups

Theme 3) Role of parents
Half of the participants did not bring their parents to
consultation after the age of 15-16 for practical reasons or
the young persons decision
it felt embarrassing to have my mom there when I was that
old
Half of the participants felt comfortable sharing consultations
with their parents from time to time even in adult care
it is natural , like they are interested in my education as well

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Results Focus groups

Theme 4) To be seen or not

The young adults strongly felt that guidance was of

little help if the doctor or nurse did not see them as
individuals with a unique story
They emphasized the importance of personalised
treatment

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Conclusions
The qualitative data
from the focus group
interviews gave
valuable insight in the
experiences of young
adults with T1DM
Themes from the data
are integrated in the
national survey

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Acknowledgements
The young participants
The Norwegian Pediatric Society
The Norwegian Medical
Association
The Norwegian Directorate of
Health
The Norwegian Diabetic
Association
T. Skrivarhaug and H. Iversen !

ISPAD Toronto 2014