Connect
MJA
MJA

Challenges of transition to adult health services for patients with rare diseases

Yvonne A Zurynski and Elizabeth J Elliott
Med J Aust 2013; 198 (11): . || doi: 10.5694/mja13.10424
Published online: 17 June 2013

What can be done for young people stuck in “health care limbo” when they leave paediatric services?

The teenage years are a time of transition, when young people must adapt to enormous physiological and emotional changes but also need time to aspire to the future. Young people living with chronic complex disease have dreams, but their challenges are amplified as they face transition from paediatric to adult health services and begin to take charge of their own complex health care needs.1


  • 1 Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, NSW.
  • 2 Australian Paediatric Surveillance Unit, Sydney, NSW.



Acknowledgements: 

We thank Kate Steinbeck, Marie Deverell and Lynne Brodie for their comments on the manuscript. We thank Rare Voices Australia, the SMILE Foundation, the University of Sydney, Imogen Yang, Megan Fookes, Lesley Murphy, Jude Foster, Tamara Johnston, Catherine Gasparini, Evie Smith and Jade Mangan for supporting the Transition Forum. Australian Paediatric Surveillance Unit activities are supported by Australian Research Council Linkage Project Grant LP110200277and National Health and Medical Research Council Practitioner Fellowship 1021480 (to E E). This project was supported in part by funding from the Australian Government under the Chronic Disease Prevention and Service Improvement Fund. Our article does not necessarily reflect the views of the Australian Government.

Competing interests:

No relevant disclosures.

  • 1. Steinbeck KS, Brodie L, Towns SJ. Transition to adult care in an Australian context. In: Wood D, Reiss JG, Ferris ME, et al, editors. Transition from pediatric to adult medical care. New York: Nova, 2012: 261-270.
  • 2. Rosen DS, Blum RW, Britto M, et al. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health 2003; 33: 309-311.
  • 3. Royal Australasian College of Physicians. Paediatrics and Child Health. Policies. Transition to adult health services for adolescents with chronic conditions. Sydney: RACP, no date. http://www.racp.edu.au/index.cfm?objectid=39396AC9-E30B-7941-0FD53740FF78DBC8 (accessed Mar 2013).
  • 4. Lister S, Brodie L. Transition Care Workforce Project. Final report: November 2008. Transition Care Network, NSW Agency for Clinical Innovation. http://www.aci.health.nsw.gov.au/__data/assets/pdf_file/0003/153615/transition_care_workforce_report.pdf (accessed Apr 2013).
  • 5. Sloman F. Transfer of young adults with complex medical needs project. Royal Children’s Hospital. Melbourne: RCH, 2005. http://www.health.vic.gov.au/subacute/transfer_young.pdf (accessed Mar 2013).
  • 6. Kirby T. Australia makes up for lost time on rare diseases. Lancet 2012; 379: 1689-1690.
  • 7. Anderson M, Elliott EJ, Zurynski YA. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis 2013; 8: 22.
  • 8. Australian Paediatric Surveillance Unit. Young people living with rare disease call for better health services and peer support. Sydney: APSU, 2013. http://www.apsu.org.au/home/news (accessed Mar 2013).
  • 9. Olauson A. The Agrenska centre: a socioeconomic case study of rare diseases. Pharmacoeconomics 2002; 20 Suppl 3: 73-75.
  • 10. General Practice NSW. 10 minute update. Projects and services. Introducing the Trapeze Adolescent Service. Sydney: GPNSW, 2013. http://www.gpnsw.com.au /newsletters/10-minute-update/10-minute-update-issue-14.html (accessed May 2013).

Author

remove_circle_outline Delete Author
add_circle_outline Add Author

Comment
Do you have any competing interests to declare? *

I/we agree to assign copyright to the Medical Journal of Australia and agree to the Conditions of publication *
I/we agree to the Terms of use of the Medical Journal of Australia *
Email me when people comment on this article

Online responses are no longer available. Please refer to our instructions for authors page for more information.