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Challenges of transition to adult health services for patients with rare diseases
Author(s) -
Zurynski Yvonne A,
Elliott Elizabeth J
Publication year - 2013
Publication title -
medical journal of australia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.904
H-Index - 131
eISSN - 1326-5377
pISSN - 0025-729X
DOI - 10.5694/mja13.10424
Subject(s) - transition (genetics) , medicine , health services , family medicine , environmental health , biology , biochemistry , gene , population
he 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 Young people need the assistance of adult health services to deal with adult issues: sexual health, fertility, drug and alcohol use, mental health, lifestyle-related disease and issues related to disability, employment, education and training. For most of their lives, young people with chronic diseases have been engaged in a paediatric, family-centred multidisciplinary model of care. They need preparation and support to move into adult services, which are more specialised, less integrated, and centred more on the individual than on the family.1,2 Failed transition leads to poor engagement with health services and adverse health outcomes.2 Despite a number of policy initiatives to provide ageappropriate and stage-appropriate care for adolescents and the development of disease-specific transition pathways (eg, for cystic fibrosis, spina bifida and diabetes),1,3-5 transition is fraught for young people living with chronic and complex diseases, especially rare diseases. Providing disease-specific clinics for every rare disease is unrealistic; there are almost 10 000 rare genetic diseases alone. Most rare diseases have their onset in childhood, are chronic, complex, disabling and require frequent, specialist care throughout the life span.6 This necessitates access to multiple doctors, allied health workers, pathology and pharmacy services.7 Better recognition of rare diseases and increasing survival rates have led to a greater demand for transition services from this group and we must respond to their needs. Yvonne A Zurynski BAppSc, MAppSc, PhD, Associate Professor,1 and Deputy Director2