Transition in chronic illness: Who is going where?
Child; Humans; Interviews as Topic; Hospitals; Pediatric; adolescent; Adolescent Transitions; Continuity of Patient Care/organization & administration; Adolescent Medicine; Delivery of Health Care/organization & administration; Chronic Disease/epidemiology/therapy; New South Wales/epidemiology
AIM: With increasing survival rates for chronic childhood illness, there has been an increasing focus on the transition of clinical care from paediatric to adult services. Data regarding patient numbers are essential for strategic planning and for optimal management. We report on a data collection exercise from the New South Wales Greater Metropolitan Clinical Taskforce Transition Program. METHODS: Data were collected between August 2004 and October 2005 through face-to-face interviews with over 200 clinicians in 68 clinical services in tertiary paediatric hospitals in New South Wales, providing information on approximately 4200 patients. RESULTS: Sixty-eight services kept a database on patients with chronic illness but less than half were electronic. Eight services (12%) could specifically identify patients in the active phase of transition on their databases. The five most prevalent clinical groups requiring transition to adult specialist health care (excluding cerebral palsy and developmental disability) were diabetes, other endocrinology, neurology, spina bifida and gastroenterology. CONCLUSIONS: There are large numbers of young people with chronic illness and disability who need effective transition to long-term adult care. This study has enabled the identification of paediatric aspects of the transition process that require attention.
2008
Steinbeck KS; Brodie L; Towns SJ
Journal Of Paediatrics And Child Health
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1440-1754.2008.01321.x" target="_blank" rel="noreferrer">10.1111/j.1440-1754.2008.01321.x</a>
Morbidity and mortality in medium chain acyl coenzyme A dehydrogenase deficiency
Child; Humans; infant; Prognosis; Incidence; Morbidity; adolescent; Preschool; infant; Q3 Literature Search; Newborn; Lipid Metabolism; Acyl-CoA Dehydrogenase; New South Wales/epidemiology; Deficiency Diseases/epidemiology; Fatty Acid Desaturases/deficiency; Hemiplegia/complications; Inborn Errors/epidemiology/mortality
Medium chain acyl coenzyme A dehydrogenase (MCAD) deficiency presents with episodic fasting, hypoketotic hypoglycaemia, and coma. It is known to be potentially lethal, but the outlook for survivors is thought to be good. We reassessed all patients with MCAD deficiency diagnosed in New South Wales (population six million) to explore long term morbidity and mortality. There were 16 probands and two siblings were confirmed and two presumed to be affected. Assuming an incidence of 1:20,000 births, these represented about 22% of the total number of expected cases. Five (25%) of the 20 patients died aged 3 days-30 months, all during the first episode of illness. Seven others had only one episode and one affected sibling was asymptomatic. Eight had had significant neonatal symptoms. Only two had a significant, serious life threatening episode after diagnosis. Of 15 survivors, one has severe handicap after a single severe episode, and four, aged 9-17 years, have mild intellectual handicap. Eight (including six aged less than 7 years), have apparently normal development. Two are lost to follow up. Our study of unselected patients with MCAD deficiency from a defined population shows not only a substantial risk of death, but also of long term morbidity.
1994
Wilcken B; Hammond J; Silink M
Archives Of Disease In Childhood
1994
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/adc.70.5.410" target="_blank" rel="noreferrer">10.1136/adc.70.5.410</a>