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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): 575-576.
doi:
10.5694/mja13.10424

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

Yvonne A Zurynski, BAppSc, MAppSc, PhD, Associate Professor,1 and Deputy Director2
Elizabeth J Elliott, MD, MPhil, FRACP, Professor,1 and Director2
1 Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, NSW.
2 Australian Paediatric Surveillance Unit, Sydney, NSW.
Article References: 
Reference Text: 
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.
Reference Order: 
1
Reference Text: 
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.
Reference Order: 
2
PubMed ID: 
14519573
Reference Text: 
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).
Reference Order: 
3
Reference Text: 
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).
Reference Order: 
4
Reference Text: 
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).
Reference Order: 
5
Reference Text: 
Kirby T. Australia makes up for lost time on rare diseases. Lancet 2012; 379: 1689-1690.
Reference Order: 
6
PubMed ID: 
22567671
Reference Text: 
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.
Reference Order: 
7
PubMed ID: 
23398775
Reference Text: 
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).
Reference Order: 
8
Reference Text: 
Olauson A. The Agrenska centre: a socioeconomic case study of rare diseases. Pharmacoeconomics 2002; 20 Suppl 3: 73-75.
Reference Order: 
9
PubMed ID: 
12457427
Reference Text: 
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).
Reference Order: 
10

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