First insights from the BTS idiopathic pulmonary fibrosis (IPF) registry
| Autor: | Sue Copley, R K Coker, Ian Forrest, L. Richeldi, Lisa Spencer, Helen Parfrey, Ling-Pei Ho, William Chang, Toby M. Maher, Monica Spiteri, Owen Dempsey, Nazia Chaudhuri, Michael A Gibbons |
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| Rok vydání: | 2016 |
| Předmět: |
Pediatrics
medicine.medical_specialty Referral business.industry medicine.medical_treatment Nice medicine.disease Care provision respiratory tract diseases 03 medical and health sciences chemistry.chemical_compound Idiopathic pulmonary fibrosis FEV1/FVC ratio 0302 clinical medicine 030228 respiratory system chemistry Oxygen therapy Emergency medicine medicine Nintedanib Pulmonary rehabilitation 030212 general & internal medicine business computer computer.programming_language |
| Zdroj: | 1.5 Diffuse Parenchymal Lung Disease. |
| DOI: | 10.1183/13993003.congress-2016.pa2099 |
| Popis: | Background: The BTS IPF Registry, launched Feb 2013, is the first UK national platform for the collection of demographic and outcome data on IPF patients. We present a summary of the data and initial conclusions regarding care provision. Methods: Physicians based in UK Hospital Trusts are invited to participate and enter data following NHS approval and patient consent. Data collected covers: symptom presentation/duration, co-morbidities, diagnostic tests, lung function, treatments and referral pathways. Follow-up data is collected at 6 months and then yearly intervals. In July 2015 an organisational survey of participating centres was undertaken to complement Registry data. Results: By 1 Feb 2016, 39 centres have contributed 767 patient records [77% male; 23% female; mean age 72yrs]. Of these, 27% were never smokers; 67% ex-smokers; 4% current smokers. At presentation, 47% had already had symptoms for more than 24 months and 46% had an FVC outside National Institute for Health and Care Excellence (NICE) criteria for treatment with Pirfenidone or Nintedanib. Against NICE quality standards for IPF 1 , 90% of cases were reviewed by MDT; 45% were referred for pulmonary rehabilitation and only 3% received palliative support referral. 20% of patients were on oxygen therapy at first visit; oxygen assessment occurred in only 67% follow-up records. The survey showed that 17 of 20 centres had a dedicated ILD clinic and specialist ILD nurse. Conclusions: The BTS IPF Registry provides crucial information for evaluating delivery of care and treatment in IPF. The data highlight areas of care delivery requiring further improvement and investment for maximal benefit to patients. 1.Standard 79, Jan 2015 www.nice.org.uk/guidance/qs79. |
| Databáze: | OpenAIRE |
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