the MODY link nurse project - National Genetics Education and ...

An educational model for the
integration of genetics into
diabetes care: the MODY link
nurse project
Maggie Shepherd,
Heather McMahon, Helen John,

Background
• MODY (maturity onset diabetes of the
young) is a genetic form of diabetes
• Accounts for 1% of diabetes (average
diabetic clinic of 5000 would expect to have
50 MODY patients)
• MODY is often misdiagnosed as type 1
diabetes
• Genetic testing confirming subtype of
MODY can alter treatment

MODY link nurses (MLNs)
• Experienced Diabetes Specialist Nurses
(DSNs) seconded to MLN project for 3½
hours a week
• After training: raise awareness of MODY
and other genetic forms of diabetes
• Support families inc. transferring from insulin
to sulphonylurea tablets
• Receive support from clinical and scientific
staff in Exeter by phone/e-mail

Locations of MODY link nurses
4 intakes of MLNs:
• Phase 1 - July 2002
(initial funding 02-04)
• Phase 2 - May 2003
(extra funding 02-04)
• Phase 3 – March 2004
(extra funding 04-06)
• Phase 4 – Sept 2004
Implications for training
Issues re recruitment

Training
• Training at the Royal Devon and Exeter Hospital
(initially 3 days) – input from clinicians, scientists,
DSNs and clinical genetics teams
• Includes: sub-types of MODY, genetic counselling /
implications of genetic testing, identifying MODY
families, other genetic types of diabetes
• When new in post each MLN is allocated a mentor
MLN
• On-going training (1½ days) every 4 months when
all the MLNs meet

Presentations
• MLNs give presentations about MODY
to multi-disciplinary diabetes teams in
their allocated area
• Presentations are based on talks from
Exeter, case studies also used
• Adult and paediatric teams and renal
and obstetric teams included
• Referrals generated from talks

Patient referrals
• MLN takes a detailed history, draws the family
tree as well as explaining and counselling
families regarding testing and possible
implications of results
• Potential families are discussed with the Exeter
team by phone or e-mail
• MLN liaises with patients’ local diabetes team /
clinical genetics service as necessary

New opportunities
• The MLNs use the network as an informal
support group
• Presentation of a poster at the annual
professional conference (Diabetes UK)
• Writing for publication
• Involvement in setting up new MODY
clinics or joint Diabetes clinics with Clinical
Genetics teams

Evaluation: 3 key areas
MLN knowledge
• Understanding genetic
terms
• Confidence performing
activities
• Case studies
Presentations
• MLN and participants
evaluate session
Pre–Ed At 1yr

Evaluation of genetic testing
• Number of patients referred for testing increased
from average of 6.7 per month (pre-MLNs) to 16.4
• Percentage positive genetic tests in index cases
increased from 22% (pre-MLNs) to 25%. Higher
proportion of patients referred from regions with
MLNs have a positive genetic test
Positive tests
35%
30%
25%
20%
15%
10%
22%
27%
23%
31%
16%
MLN region
non-MLN
region
5%
0%
Pre MLN
project
June 2002-July
2003
July 2003-
Jan2004

What are the benefits of using a
diabetes specialist nurse network ?
• longstanding clinical experience in diabetes
- good knowledge base of diabetes
management / treatment options
- initiate, supervise & evaluate therapy changes
• part of established clinical networks
across primary & secondary care
- adult / paediatric diabetes, obstetrics & gynae,
renal, etc.

Benefits of using DSN network (cont)
• long continuity of contact with patients
- well placed to identify possible MODY / atypical
diabetes
- appreciation of pt experience
• hold key skills
- patient education / support
presentation, communication, counselling
• used to working autonomously & as part of a
multi professional team

Benefits to the DSN
• Unique professional development opportunity
- exciting, prestigious role
- able to join the project on secondment
- develop knowledge & acquire new skills
- act as a resource to colleagues
- enjoyable & rewarding !
• able to enhance / change clinical practice
• close links with Exeter team & MODY link nurse
network
• wider clinical networks

Conclusion
• MLNs have increased own knowledge of
genetics and disseminated this to diabetes
teams in their regions
• The pick-up rate for genetic testing has
increased since the inception of the project
• The success of training DSNs in genetics
could provide a model for disseminating
genetic information in other conditions