Mark L Levy Clinical Lead National Review of Asthma Deaths (NRAD) An overview Rosie Houston Programme Manager

Supporting partners

Asthma death studies - Pre-1980

Background (1) Potentially preventable or avoidable factors contributing to death from asthma identified nearly 50 years ago: Underuse of corticosteroids – 1963, 1975, 1979 Lack of Patient Education – 1963 Underuse of objective measures – 1963 Failure to recognise severity – 1979 Inadequate routine management and follow-up – 1979 Potentially preventable deaths BMJ 1976;2:721; BMJ 1976;1:1493; BMJ 1980;280:687; BMJ 1982;285(6354):1570-1

Potentially preventable factors contributing to death from asthma recent asthma death confidential enquiries: Drug treatment – Corticosteroids - 67% (2003); excess beta-agonist - 50%(2006) Underuse of objective measures – 17% (2003) Inadequate routine management and follow-up – 29% (1996); 33% GP, 21% Hospital (2003) National Guidelines not followed – 66% (2003) Thorax. 1999;54(11):978-84;PCRJ 2005;14(6):303-13; Personal communication with Dr S Nasser, Background (2)

Preventable factors can be identified in up to 50-70% of deaths from asthma – 50 years after the first asthma death studies Previous published audits/confidential enquiries have tended to be local population based studies - therefore results may not be fully representative Seems that recommendations from previous asthma death studies and guidelines (e.g. SIGN/BTS) are not being implemented Therefore…National Review of Asthma Deaths (NRAD) Feedback – publicity and Implementation of findings Background (3)

Aim To improve our understanding of why people die from asthma in order that deaths can be prevented in the future.

Objectives (1) Explore the circumstances surrounding each death from asthma over a one year period from February 2012, to include: Epidemiological & demographic factors Relevant clinical history (to include previous attacks) Allergic & environmental factors Lifestyle and psycho-social factors Management Medication To collate and distil out any key factors/theme/trends

Aims & Objectives (2) Propose what would need to change in order to prevent future deaths Make recommendations for clinical practice & service provision Raise awareness of and increase understanding of asthma amongst professionals and the public and in people with asthma themselves

Project summary The project comprises: Core data collection on all asthma deaths to include an associated national audit of care A confidential enquiry into all asthma deaths in England over one year including: Reliability of diagnosis Preventable causes An associated academic analysis to identify trigger factors Advice re improving practice

Methodology (1) Phase 1 (a) Identification of cases –Notification from health care professional (e.g. GP/nurse, hospital clinician/nurse, coroner/pathologist) –Notification from existing data source (e.g. ONS/Dr Foster) –A death where ‘asthma’ appears in Part I (a, b & c) or 2 of the death certificate –A death coded as ICD-10 code J45-46

Methodology (2) Our definition of ‘asthma death’ (for the purposes of this project) –Patients suspected/confirmed of dying from asthma Inclusion criteria –Any person who died from asthma as per case definition –Age range: all ages –Between 1 st February 2012 – 31 st January 2013

Methodology (3) Phase 1 (b) Confirmation of asthma death –This may require direct contact by clinical lead or local steering/working group member with patient’s clinician if necessary –Criteria for defining an ‘asthma death’ to be agreed

Methodology (4) Phase 2 - Collect and analyse core data (mainly questionnaires) on all confirmed deaths from asthma over 1 year from TBC to include assessment of management against quality indicators (~1250 cases) AND Collect additional information on all confirmed deaths from asthma (items TBA)

Methodology (3) Phase 3 - In-depth multidisciplinary confidential enquiry panels on all confirmed asthma deaths

Confidential Enquiry Panels (1) Panels, formed of practicing clinicians and health care professionals, carry out a review of the case notes to: –Assess where, how and why standards of care may not have been met and what the potential impact may be –Draw out environmental, social, clinical care and management issues –Identify preventable and avoidable factors –Highlight good practice.

Confidential Enquiry Panels (2) Review all confirmed asthma deaths (est n= ) 10 England regions + 3 Devolved Nations ~10 panel members per meeting (GPs, Respiratory Physicians, Asthma nurses etc) 2-4 cases per panel member

Proposed timeline nd ¼3 rd ¼4 th ¼1 st ¼2 nd ¼3 rd ¼4 th ¼1 st ¼2 nd ¼3 rd ¼4 th ¼1 st ¼ Planning and development/ Networking and raising awareness Phase 1 & 2 - Core data collection Planning and development Data collection 1st Feb st Jan 2013 Analysis and reporting Phase 3 - Confidential enquiry panels Planning and development Confidential enquiry panels 15 months of panels Analysis and reporting

Section 251 & Ethics Approval By November Application to NIGB for Section 251 approval to collect patient identifiable information without consent (England/Wales) Application to Privacy Advisory Committee & Caldicott Guardians (Scotland/Northern Ireland) – by November 2011 By January Application for ethics approval to interview a sample of families Develop methodology Develop semi structured interview schedule Develop family information sheets

Project organisational structure Commissioners Healthcare Quality Improvement Partnership (HQIP) RCP project management team Rosie Houston, Mark L Levy & project co-ordinator (TBA) Working/implementation group Meet monthly - Asthma UK, BTS, NCEPOD RCP, RCPCH, RCGP/PCRS, BSACI Involving families and community contacts working group Meet 3-4 times per year Steering group Meet 3-4 times per year - wider multidisciplinary group Stakeholders

Reporting & Dissemination Plan Quarterly bulletins A summary of data against agreed set of 5-10 key indicators will be provided to the Steering Group members Implementation/ideas With SG and College Implementation Groups Interim report on themes from both phases Final report & papers

For further information please visit: Or contact us: Mark L Levy Clinical Lead, NRAD +44 (0) or 1522 Rosie Houston Programme Manager +44 (0) or 1522