Survey of Children with post-infectious Obliterative  Bronchiolitis

Post-infectious obliterative bronchiolitis (OB) is an irreversible, chronic lung disease which usually follows a viral infection in infancy. Because the disease has similar symptoms to asthma it may be misdiagnosed and there may be a long delay between the initial illness and diagnosis, often of several years, which may have serious consequences for the health of the child. Some children may need physiotherapy to enable them to lead a normal life but others with more severe disease may need supplemental oxygen at home and be severely limited in the extent to which they can perform everyday activities.  The outcome for any individual is difficult to predict as the course of the disease is very variable.

A national study of children with post-infectious OB began in September 2005.  Paediatricians are being asked to notify the study team of any cases aged less than 17 years diagnosed between 1995-2004.

This study aims to find out the number of children affected in the UK, to determine the delay in diagnosis and the reasons for delay, to assess the range in severity of the disease, to find out how children are being treated, how families are affected by the disease and to assess mortality. 

Risk factors for the disease and quality of life will be assessed from data abstracted from patient records and patient questionnaires. Severity of disease will be determined by examination of X-rays and high resolution CT scans. The study has multi-centre research ethics approval and patient consent will be sought.

For further information please contact Dr David Spencer, Principal Investigator (Tel 0191 244 8292) or Mrs Jane Salotti, OB Research Coordinator, Tel 0191 202 3038, Email OB@ncl.ac.uk

Research Team

Prof Louise Parker, Professor of Paediatric Epidemiology, University of Newcastle

Dr Mark Pearce, Statistician, University of Newcastle

Prof David Hansell, Consultant Radiologist, Royal Brompton Hospital

Dr Helen Alton, Consultant Paediatric Radiologist, Birmingham Children’s Hospital

Dr Les Mitchell, Consultant Radiologist, Freeman Hospital, Newcastle upon Tyne

Dr Cathy Owens, Consultant Paediatric Radiologist, Great Ormond Street Hospital

Dr Adam Jaffe, Consultant & Senior Lecturer in Respiratory Research, Great Ormond Street Hospital

Dr Liesl Osman, Senior Research Fellow, Aberdeen University

Prof Liz Juniper, Professor Emeritus, McMaster University, Ontario, Canada

Cases notified by the UK survey will be reconciled with those reported to the British Paediatric Orphan Lung Diseases (BPOLD) register. OB is one of 9 rare lung diseases being reported to BPOLD which uses an electronic form of monthly surveillance based on that used by the British Paediatric Surveillance Unit (http://www.bpold.co.uk).

 A patient and parent forum can be found at http://www.bpold.co.uk/phpBB/