Helping Young People Take Control of Their Diabetes and Successfully Transition to Adult Services.
North Coast Area Health Service
This project was entered in the Baxter 2006 NSW Health Awards, Continuity of Care, category.
Abstract
Transition from paediatric to adult care, for a young person with diabetes is a time of great change and vulnerability, occurring against a background of physiological, behavioural and social change. Studies indicate that once leaving paediatric care, it is common for the young adults’ medical visits to decline, resulting in deterioration of diabetes control and establishment of early vascular complications (International Society for Paediatric and Adolescent Diabetes 2000).
No formal diabetes transition service existed in NRAHS, although for some years a NSW Health Paediatric Diabetes Outreach Clinic was held six monthly at Lismore, Ballina and Grafton. The Northern Rivers Area Health Service (NRAHS) Diabetes Centres Project developed a flexible transition program model that could be delivered across the Health Area, and adapted for each centres sociodemographic needs.
Aim
To develop a model that facilitates a quality continuum of care for young people with diabetes (and their families) transitioning from paediatric to adult health care settings.
Background
Type 1 diabetes is one of the most common childhood diseases in developed nations (Tuch, Dunlop and Proietto 2000), and it is well documented that the rate of diabetes is increasing, Type 2 diabetes is now more common in children, and recent reports show the incidence of Type 1 diabetes is also increasing (Australian Institute of Health and Welfare 2006). For adolescents diagnosed with diabetes as children, transition involves leaving an informal family centred, socially orientated model of care, and moving across to adult health services that are more disease focused, formal and direct. Approximately 40% of young adults aged 18 to 25 years are lost to follow up once leaving paediatric care (Fleming, Carter, and Gillibrand 2002). For the adolescents seen at the local paediatric clinics at Ballina, Lismore and Grafton, there were no young adult diabetes services to access and often once they left the paediatric health care settings, they no longer accessed medical services in a methodical way until a crisis forced them back into the health system.
Methodology
The principles of a successful transition were identified through review of literature, current models of transitional care, review of existing recommendations/ guidelines, and discussion with clinicians and centres currently conducting transition programs. The needs and experiences of adolescents with Type 1 diabetes and their families within the NRAHS were determined through questionnaires, interviews, and using local media. Analysis of information received resulted in the identification of common goals and principles of a successful transition and facilitated the development of a draft transition program. The draft program and associated tools were disseminated for comment amongst families, Paediatricians, Physicians, Endocrinologists and Diabetes Educators working across the NRAHS and metropolitan centres with established transition programs. The feedback was considered and incorporated into the final draft of the proposed transition program.
Planning and Implementation
The transitional program provided a directional map to help lead young adults towards adult diabetes services, and incorporated the following tools:
Explanatory brochures for parents,
Self knowledge questionnaires for the young person with diabetes,
Personalised carepaths that provided assessment and planning for each young person undergoing transition and
A comprehensive booklet for the young person with diabetes
At age 14 -16 years, discussion begins with the teenager and parents about leaving the paediatric setting, and the young person is encouraged to seek greater independence, including being seen at health consultations without their parents. The teenager’s knowledge is evaluated to identify deficits in diabetes self-management skills, and this information is incorporated into the teenager’s transition carepath.
A one-day group workshop is conducted for those in their final year of high school to provide them with education on adult models of care, to address psychological and socially relevant issues and to provide an opportunity to refresh their knowledge of diabetes self-management. Guest speakers on these days include Dietitian, Youth Counsellors, a Sexual Health Worker and could include a local GP, adult Physician etc.
At their last paediatric visit future appointments may be arranged and details provided of specialist diabetes health services in areas they are moving to. Permission is sought to contact the young person in 6 –12 months to address any problems they may be experiencing, providing an opportunity to offer support and problem solving at future contact should the young person have any issues they seek to address.
Outcomes and Evaluation
All tools in the transition were found to be relevant and easy to apply for those who used them. 100% of families consulted believed the transition addressed unmet needs in their child’s diabetes management. Diabetes Educators throughout the health service are using parts of the program according to the needs of their young clients. Evaluation of the workshop by the young people attending was 100% positive with all stating they would recommend it to other young people with diabetes, and included participant comments such as “I think the day covered everything that we need to know”, and “The day was good, I took in a lot of information”. One Diabetes Centre with the largest numbers of older adolescents in their client group has found that contact with them has been maintained after they have left paediatric care, resulting in 60% of discharged adolescents maintaining or establishing new contacts with specialised diabetes services compared to previous nil contact in the initial years post paediatric care. The comprehensive booklet “Getting Connected’ containing tips such as ‘Talking to your GP’, ‘Safe drinking’, ‘Getting a job’ etc, has received positive feedback, typified by a mothers comment …” I kept a copy for myself for referencing and Michael thought it was GOOD.. and that is saying a lot from a male teenager!” Diabetes Australia NSW has sought permission to post parts of the program on their national website for teenagers with diabetes and there has been positive feedback at sites where the program has been implemented.
Future scope
The program is still in its infancy and is being introduced and promoted across the restructured North Coast Area Health Service (NCAHS). It has set the scene for multidisciplinary pathways for those involved in the care of young people with diabetes in NCAHS and is yet to be fully implemented. A hard copy tool kit is to be designed and distributed allowing for easier application by busy Diabetes Educators. The development of a young adult clinic using local adult diabetes specialists is currently being considered.
References
Australian Institute of Health and Welfare, A. (2006). Incidence of Type 1
diabetes in Australians under 40 years; a snapshot of National Diabetes
Register data for 2004. Canberra.
Fleming, E., Carter.B. and Gillibrand. W (2002). "The transition of adolescents
with diabetes from children's health care service into the adult health care
service: a review of the literature." Journal of Clinical Nursing 11: 560-7.
International Society for Paediatric and Adolescent Diabetes (2000).
"Consensus Guidelines for the Management of Type 1 Diabetes Mellitus in
Children and Adolescents 2000."
Tuch, B., Dunlop M and J. Proietto (2000). Diabetes Research A guide for
Postgraduates. London, Taylor and Francis Group.
