Why asthma still kills

1. Why asthma still kills National Review of Asthma Deaths (NRAD) www.rcplondon.ac.uk/NRAD Mark L Levy FRCGPClinical Lead, NRAD

2. National Review of Asthma Deaths • Commissioned by: Healthcare Quality Improvement Partnership (HQIP) • On behalf of: NHS England, NHS Wales, Health and Social Care Division of the Scottish Government, Northern Ireland Department of Health Social Services and Public Safety • Delivered by: Clinical Effectiveness and Evaluation Unit of the Clinical Standards Department of the Royal College of Physicians

3. Supporting partners Eastern Region Confidential Enquiry of Asthma Deaths

4. Lecture plan – NRAD Report • Aim & Objectives • Death Certification • Methodology • Demographics and audit data • Panel Conclusions & Avoidable factors • Key messages • Key recommendations • Acknowledgements

5. Overall aim of NRAD • The aim of the NRAD was to understand the circumstances surrounding asthma deaths in the UK, in order to identify avoidable factors and make recommendations for changes to improve asthma care as well as patient self-management • (This was not a prevalence study – did not aim to determine the number of asthma deaths in the UK)

6. Objectives of the NRAD • Conduct a multidisciplinary, confidential enquiry of asthma deaths Feb 2012 - Jan 2013 • effectiveness of the management of asthma (acute and chronic) • Identify potential avoidable factors • Make recommendations for changes - to reduce the number of preventable asthma deaths • Understand the effect of asthma and death from asthma on families and carers

7. Lecture plan – NRAD Report • Aim & Objectives • Death Certification • Methodology • Demographics and audit data • Panel Conclusions & Avoidable factors • Key messages • Key recommendations • Acknowledgements

8. Underlying cause of death • On the basis of what is written on the Medical Certificate of the Cause of Death (MCCD), the Office for National Statistics (ONS), National Records of Scotland (NRS), Northern Ireland Statistics and Research Agency (NISRA) then determine the underlying cause of death. Based on the formula used world wide for this purpose - International Classification of Disease (ICD) • So where an MCCD reads: • The underlying cause of death (UCD) is determined to be Asthma • The underlying cause of death (UCD) is also Asthma Ia Respiratory Failure Ib Asthma Ic Chest infection Ia Chest infection II Asthma, IBS, Liver failure, sepsis OR

9. Lecture plan – NRAD Report • Aim & Objectives • Death Certification • Methodology • Demographics and audit data • Panel Conclusions & Avoidable factors • Key messages • Key recommendations • Acknowledgements

10. NRAD Notification(Section 251 of the NHS Act 2006) • Office for National Statistics (ONS); National Records of Scotland (NRS); Northern Ireland Statistics and Research Agency (NISRA). • NRAD Website • Clinicians • Families / Friends • Coroners • Local co-ordinators • (374 in 297 Hospitals)

11. NRAD flow diagram - 1 * MCCD= Medical Certificate of Cause of Death

12. Clinical information requested for final 2 years (n=900) • ALL CONSULTATIONS • ALL CORRESPONDENCE • ALL PRESCRIPTIONS (ACUTE & REPEAT) • PM/CORONERS REPORT/AMBULANCE • COPIES OF ANY LOCAL REVIEWS

13. NRAD flow diagram - 2 Clinical Lead & Expert panel

14. NRAD flow diagram - 3

15. Multidisciplinary confidential enquiry panels • 37 panel meetings • 174 volunteer assessors • 6 -10 cases per panel • Two assessors per case • Panel assessment form • Consensus agreement • 195/276 died from asthma • 1000 panel recommendations • Major factors in 60% deaths potentially avoidable

16. Sources of data Audit data and Panel conclusions … therefore denominators vary in the report

17. Lecture plan – NRAD Report • Aim & Objectives • Death Certification • Methodology • Demographics and audit data • Key messages • Key recommendations • Acknowledgements

18. LOCATION OF DEATH

19. Patients • Duration of asthma(n=104) : 0-62 yrs (Median 11 yrs) • Age at diagnosis(n=102) : 10 mths – 90 yrs (Median 37 yrs) • Age at death(n=193) : 4 yrs – 97 yrs (Median 58 yrs) • Severity of asthma (n=155): • (classified by the Clinicians) Mild 14 (9%) • Moderate 76 (49%) • Severe 61 (39%)

20. Definition of severity of asthma: • ‘Amount of treatment required to gain control of the asthma’ European respiratory Journal 2008;32(3):545-54

21. Mild / Moderate Asthma - 58% of those who died from asthma • It is possible that many of those cases defined by their doctors as Mild or Moderate ….. were more severe

22. Case review 1 (from a number of cases - for annonymity) • Middle aged male … asthma diagnosed in childhood • Classified by GP with mild asthma • Last asthma review 2 years before death • symptoms most days; Rx - salbutamol 2-3 times most days • PEF 120 (previous best 260, predicted 426) • Dr added beclometasone 100mcg bd • Failed to attend review appointment for follow-up • ….. but seen twice by GP for unrelated symptoms in next two months

23. Case review 1 (continued) • 8 months before death: Attended GP • breathlessness and wheeziness. Rx antibiotic only • Seen 3 times subsequently for arthritis symptoms • Died at home few months later • post mortem examination : Ia Acute asthma • During his last year of life • salbutamol inhalers : 18 prescriptions • beclometasone 100mcg (200 doses) : 1 prescription • .......... Did he really have mild asthma? • It is possible that many of those cases defined by their doctors as Mild or Moderate ….. were more severe

24. Primary care of the 195 cases(in the 12 months before death) • 64 (33%) - no details on asthma diagnosis • 70/102 - diagnosed > age of 15 • ? Late onset; ? Delayed diagnosis; ? Recurrence • 84 (43%) - no record of asthma review 12 mths • 37 (19%) - had assessment of asthma control • 44 (23%) - had Personal Asthma Action Plans (PAAP) • 112 (57%) - not under specialist supervision

25. Excessive GP prescribing of Short Acting Beta-Agonist Bronchodilators (SABAs) (n= 189/194 ; 97%) • Numbers of devices prescribed during final year (n=165) • Range: 1 to 112; median of 10 inhaler devices • > 6 SABA : 92/165 (56%) inhaler devices • > 12 SABA : 65/165 (39%) inhaler devices • >50 SABA : 6 patients Excess need for reliever medication (SIGN/BTS) = Poor asthma control

26. Inadequate GP prescribing of Inhaled Corticosteroids (ICS) ICS alone or in combination with Long Acting Beta-agonist Bronchodilator (ICS/LABA)(n= 168/195 ; 86%) • Number of prescribed devices final year (n=128): • Range: 1 to 54, median of 5 inhaler devices • < 4 ICS devices in 12 mths : 49/128 (38%) • < 12 ICS devices in 12 mths : 103/128 (80%)

27. Prescribing NRAD Recommendation: Electronic surveillance of prescribing in primary care to alert clinicians and pharmacists -excessive Short Acting Beta-Agonist Bronchodilators (SABAs) or too few preventers

28. Practices (denominator = 138 except where mentioned otherwise) • Median 4 Doctors/practice (n=131); median 9000 patients • Quality Outcomes Framework (QOF) data (n=89) • Full points 74/89 (83%) • Asthma reviews - performed by: • 78/136 (57%) GPs • 3 (2%) GP with Special Interest • 82 (60%) Nurses with diploma • 62 (46%) nurses without asthma diplomas *

29. Case review 2 – Asthma review without action (from a number of cases - for annonymity) • Female with late onset asthma • Confirmation of diagnosis delayed - after many months on therapy with intermittent salbutamol (28% reversibility on spirometry) • Low dose inhaled corticosteroids (beclometasone 100mcg) • Asthma review with practice nurse • Waking at night; daytime symptoms and asthma limited her lifestyle • Px last 12 months: 16 salbutamol inhalers; 1 beclometasone inhaler • Nurse advised patient to make an appointment to see the doctor • The patient died 8 weeks later without ever making an appointment to be seen

30. Case review 2 (continued) :Issues • Quality Outcomes Framework (QOF) - tick box process? • Delegation appropriate? • Training • NRAD Recommendations: • Annual structured review by a healthcare professional with specialist training in asthma • Assess asthma control at every asthma review. Where loss of control is identified, immediate action is required including escalation of responsibility, treatment change and arrangements for follow-up

31. Lecture plan – NRAD Report • Aim & Objectives • Death Certification • Methodology • Demographics and audit data • Panel Conclusions & Avoidable factors • Key messages • Key recommendations • Acknowledgements

32. Main conclusions for the 276 cases considered by panels

33. Overall assessment by panels: Quality of care

34. Overall assessment by panels: Quality and standard of care

35. Major factors identified by panels(i.e. contributed significantly to the deaths, where different management would reasonably be expected to have affected the outcome )

36. Potential avoidable factors identified by panels related to the patient their family and the environment NRAD Recommendation: Parents and children and those who care for them should be educated about managing asthma

37. Potential avoidable factors identified by panels in routine medical care and ongoing supervision and monitoring NRAD Recommendation: Health Care Professionals should be aware of the features that increase the risk of asthma attacks and death, including the significance of concurrent psychological and mental health issues.

38. The panels identified potential avoidable factors related to the assessment of the final attack • NRAD Recommendation: • Every NHS hospital and general practice - clinical lead for asthma services responsible for formal training in acute asthma care

39. The panels identified potential avoidable factors related to the management of the final attack • Delay or failure : to initiate treatment / to follow guidelines • Use of NIV in acute severe asthma • Failure to recognise risk features (High normal pCO2 levels) • NRAD Recommendation: • Every NHS hospital and general practice - clinical lead for asthma services responsible for formal training in acute asthma care • The use of patient-held ‘rescue’ medications should be considered for all patients who have had a life-threatening asthma attack or a near fatal episode

40. The panels identified potential avoidable factors related to follow-up after attacks • 19/195 (10%) died within 28 days of hospital admission for asthma attack • In 13/19 (68%) potentially avoidable factors • discharge into the community • follow-up arrangements • At least 40 (21%) attended an emergency department (ED) with an asthma attack in the previous year (23 ≥ 2 occasions) • NRAD Recommendations – follow-up and referral: • Follow-up after every attendance for an asthma attack • Secondary care follow-up - after every hospital admission for asthma, and after two or more ED visits with an asthma attack in 12 mths • Patients with > 2 courses systemic corticosteroids or on BTS step 4/5 must be referred to a specialist asthma service

41. Environmental data (more detailed analysis planned) • Limitation due to absence of comparative asthma death data for 2011 • Fungal spore data: • There were low levels of alternaria & cladosporium in 2012 • There wasn’t a summer peak of asthma deaths • NRAD data supports the association between summer deaths and these spores

42. Family interviews • Approval to conduct family interviews was obtained in 2011 from the National Research Ethics Committee (NREC) reference 1522/NOCI/2012 • There were extraordinary delays in securing local research and development (R&D) and permission was only achieved from 66 (28%) of 238 approached nationally • There were difficulties approaching families • Insufficient numbers of interviews were conducted to obtain meaningful, generalisable information

43. Post mortem analysis • Planned publication as a separate paper • Data available on the RCP website as appendix

44. Health professionals were asked to submit copies of any local reviews on their patients who died • Received for 24/195 (12%) • 12 / 28 (43%) children and young people • 12 / 118 (10%) aged 20–74 years • Panels concluded 9 / 24 (38%) reviews were of adequate quality for reflective learning • NRAD Recommendation: • In all cases where asthma is considered to be the cause of death, there should be a structured local critical incident review in primary care (to include secondary care if appropriate) with help from a clinician with relevant expertise

45. Lecture plan – NRAD Report • Aim & Objectives • Death Certification • Methodology • Demographics and audit data • Panel Conclusions & Avoidable factors • Key messages • Key recommendations • Acknowledgements

46. NRAD Key Messages 1: Failure to get help in time • 45% of people died without calling for or getting medical help • 80% of children and 73% young people died before they reached hospital • NRAD Recommendation: All people with asthma - personal asthma action plan (PAAP) – why, how & when to take medication and when & how to call for help

47. NRAD Key Messages 2 : Failure by doctors, nurses, patients and carers to identify risk - missed opportunities • Prescribing • Excess relievers ; insufficient preventers • Health care utilisation • 10% recent admission • 21% ED • NRAD Recommendations: electronic monitoring prescriptions; earlier specialist referral; follow-up; named clinician responsible in hospital and primary care

48. NRAD Key Messages 3: Assess and gain asthma control • 58% (90/155) treated for mild / moderate asthma • BTS/SIGN Guidelines not implemented in 46% (89/195) • NRAD Recommendation: • Assess asthma control at every annual asthma review. Where loss of control is identified, immediate action is required including escalation of responsibility, treatment change and arrangements for follow-up

49. Lecture plan – NRAD Report • Aim & Objectives • Death Certification • Methodology • Demographics and audit data • Panel Conclusions & Avoidable factors • Key messages • Key recommendations • Acknowledgements

50. Key recommendations 1: Organisation of NHS services • Every NHS hospital and general practice - clinical lead for asthma services • Patients with > 2 courses systemic corticosteroids or on BTS step 4/5 must be referred to a specialist asthma • Follow-up arrangements : • after every attendance for an asthma attack • Secondary care follow-up - after every hospital admission for asthma, and after two or more times ED visits with an asthma attack in 12 mths • A standard national asthma template • Electronic surveillance of prescribing in primary care to alert clinicians (excessive SABAs or too few preventers • A national ongoing audit of asthma