Transition of patients with interstitial lung disease from paediatric to adult care.
Vaclav KouckyPetr PohunekMartina Koziar VasakovaAndrew BushPublished in: ERJ open research (2021)
The European Cooperation in Science and Technology (COST) is a funding organisation for the creation of research networks, called COST Actions. COST Action 16125 was dedicated to European network for translational research in children's and adult interstitial lung disease. Working Group 5 of the COST Action CA16125 focussed on the problems of transition of children with interstitial lung diseases from paediatric to adult care. Results of this survey performed among members of the Working Group and some affiliated specialists showed highly variable and inadequate current system of transitions of these patients to adult care in most centres. In most centres there is no established and consistent procedure to guarantee appropriate transfer of information and prepare the patient for transition to a new specialist and a new team. Immediate action is therefore required. The Working Group has prepared a model procedure for the transition, based on protocols from several centres with established pathways, either for childhood interstitial lung disease or other chronic respiratory diseases.
Keyphrases
- interstitial lung disease
- systemic sclerosis
- palliative care
- rheumatoid arthritis
- idiopathic pulmonary fibrosis
- healthcare
- quality improvement
- childhood cancer
- young adults
- end stage renal disease
- emergency department
- intensive care unit
- public health
- mental health
- chronic kidney disease
- newly diagnosed
- ejection fraction
- pain management
- case report
- affordable care act
- peritoneal dialysis
- prognostic factors
- cross sectional
- health information
- chronic pain
- respiratory tract