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Patient involvement in ERS Task Forces Nicola Cassidy, Irish Lung Fibrosis Association. ERS IPF Task Force. 15 Task Forces –including : Home mechanical ventilation; Lung cancer; Pulmonary rehabilitation; Asthma; Primary ciliary dyskinesia; Bronchiectasis. The ERS IPF Task Force – why?.
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Patient involvement in ERS Task Forces Nicola Cassidy, Irish Lung Fibrosis Association
ERS IPF Task Force 15 Task Forces –including: Home mechanical ventilation; Lung cancer; Pulmonary rehabilitation; Asthma; Primary ciliary dyskinesia; Bronchiectasis
The ERS IPF Task Force – why? • To review guidelines and produce an updated statement including patient perspectives via the ELF
ERS IPF Task Force – How? • ELF invited IPF patient organisations the AIR meeting in Nice 2013 to get involved by holding focus groups • Focus groups (over 50 patients): • ILFA, Ireland • BVL, Belgium • AMA fuoridalbuio, Italy • Bristol PF Support Group, UK • Complementary literature: • Lung fibrosis quality criteria questionnaire, Netherlands, 2011 • EU IPF Patient Charter, 2014
ERS IPF Task Force – what? • The 10 priorities integrated into the Task Force manuscript for publication in 2016: • rapid diagnosis - understanding IPF staging • lung transplantation - access to clinical trials • pulmonary rehabilitation - medication issues • psychological support - communication • advanced care quality of life information and support • Communication and support paper planned for 2016