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6.5.2014 Mark L Levy FRCGP Clinical Lead, NRAD Why asthma still kills National Review of Asthma Deaths (NRAD) www.rcplondon.ac.uk/NRAD.

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Presentation on theme: "6.5.2014 Mark L Levy FRCGP Clinical Lead, NRAD Why asthma still kills National Review of Asthma Deaths (NRAD) www.rcplondon.ac.uk/NRAD."— Presentation transcript:

1 Mark L Levy FRCGP Clinical Lead, NRAD Why asthma still kills National Review of Asthma Deaths (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 1.Conduct a multidisciplinary, confidential enquiry of asthma deaths Feb Jan effectiveness of the management of asthma (acute and chronic) 2.Identify potential avoidable factors 3.Make recommendations for changes - to reduce the number of preventable asthma deaths 2.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 Asthma mentions MCCD* (3544) Excluded – not underlying cause of death or >75 and asthma in part II (2644) Included (900)No data (145) Insufficient data (127) Not asthma (352) Confidential enquiry (276) * 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 Asthma mentions MCCD (3544) Excluded – not underlying cause of death or >75 and asthma in part II (2644) Included (900) No data (145; 16%) Insufficient data (127; 14%) Not asthma (352; 39%) Confidential enquiry (276; 31%) Clinical Lead & Expert panel

14 NRAD flow diagram - 3 Asthma mentions MCCD (3544) Excluded – not underlying cause of death or >75 and asthma in part II (2644) Included (900) No data (145; 16%) Insufficient data (127; 14%) Not asthma death (352; 39%) Confidential enquiry (276; 31%)

15 Multidisciplinary confidential enquiry panels 37 panel meetings 174 volunteer assessors 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 MCCDs ONS/NISRA/NRS Panel assessor conclusions and potential avoidable factors Information provided by clinicians Audit data extracted from medical records Clinical notes (primary & secondary care & paramedics) Post mortem reports 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 1.Quality Outcomes Framework (QOF) - tick box process? 2.Delegation appropriate? 3.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 People who died from asthma195 (71) People who did not have asthma27 (10) People who had asthma but did not die from it36 (13) Insufficient information: - To decide whether the person had asthma14 (5) - To decide whether the person died of asthma4 (1)

33 Overall assessment by panels: Quality of care All 195 (Adequate) n(%) < 20 years (n=28) (adequate) n(%) a) Quality of care: Routine/chronic management56 (29)2 (7) b) Quality of care: Management of attacks in the past69 (35)8 (29) c) Quality of care: Management of the final attack66 (34)13 (46) d) Overall standard of asthma care for the patient Good practice31 (16)1 (4) Room for improvement - aspects of clinical care51 (26)8 (29) Room for improvement - aspects of organisational care6 (3)2 (7) Room for improvement - aspects of clinical and organisational care45 (23)3 (11) Less than satisfactory several aspects of clinical and /or organisational care were well below a standard one would expect 51 (26)13 (46)

34 Overall assessment by panels: Quality and standard of care All 195 (Adequate) n(%) < 20 years (n=28) (adequate) n(%) a) Quality of care: Routine/chronic management56 (29)2 (7) b) Quality of care: Management of attacks in the past69 (35)8 (29) c) Quality of care: Management of the final attack66 (34)13 (46) d) Overall standard of asthma care for the patient Good practice31 (16)1 (4) Room for improvement - aspects of clinical care51 (26)8 (29) Room for improvement - aspects of organisational care6 (3)2 (7) Room for improvement - aspects of clinical and organisational care45 (23)3 (11) Less than satisfactory several aspects of clinical and /or organisational care were well below a standard one would expect 51 (26)13 (46)

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 ) n Did not recognise high-risk status21 Lack of specific asthma expertise17 Did not perform adequate asthma review16 Did not refer to another appropriate team member16 Failure to take appropriate medication in month before death15 Failure to take appropriate medication in year before death13 Over prescribed short acting beta agonist bronchodilator13 Poor or inadequate implementation of policy/pathway/protocol13 Lack of knowledge of guidelines12 Did not adhere to medical advice10

36 Potential avoidable factors identified by panels related to the patient their family and the environment All ages (n=195) n(%) < 10 yrs (n=10) n(%) yrs (n=18) n(%) One or more avoidable factors126(65)9(90)17(90) Poor adherence to advice94(48)9(90)13(72) Psychosocial factors51(26)3(30)4(22) Smoker or exposed to second hand smoke 47(24)3(30)(7(39) Allergy23(12)2(20)7(39) 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 Primary Care (n=195) n(%) Secondary Care (n=83) n(%) One or more avoidable factors137 (70)24 (29) Avoidable prescribing factor92 (47)12 (14) Lack of adherence to guidelines115 (59)19 (23) 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 Primary Care (n=38) n(%) Secondary Care (n=59) n(%) < 10 yrs Sec Care (n=2) n(%) yrs Sec Care (n=5) n(%) ≥ 1 factors13(34)20(34)1(50)1(20)

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 Primary Care (n=38) n(%) Secondary Care (n=59) n(%) < 10 sec care (n=2) n(%) prim care (n=1) n(%) sec care (n=5) n(%) ≥ 1 factors12(32)20(34)1(50)1(100)2(40)

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

51 Key recommendations 2: Medical and Professional Care All people with asthma -personal asthma action plan (PAAP) Structured review by a healthcare professional with specialist training in asthma, at least annually Factors that trigger or make asthma worse must be elicited routinely and documented in the medical records and personal asthma action plans (PAAPs) 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 Aware of the features that increase the risk of asthma attacks and death, including the significance of concurrent psychological and mental health issues

52 Key recommendations 3: Prescribing and medicines use Patients prescribed > 12 SABAs in 12 mths - for urgent review of their asthma control An assessment of inhaler technique - routinely undertaken and also checked by the pharmacist Monitor non-adherence with preventers Where long-acting beta agonist bronchodilators are prescribed for people with asthma - should be in a single combination inhaler

53 Key recommendations 4: Patient factors and perception of risk Patient self-management should be encouraged to reflect their known triggers (increase Rx before the start of the hay fever season, avoiding NSAIDs, early use of oral corticosteroids with viral or allergic-induced exacerbations) Smoking and/or exposure to second-hand smoke - documented & offer referral Parents and children, and those who care for or teach them, should be educated about managing asthma. This should include emphasis on ‘how’, ‘why’ and ‘when’ they should use their asthma medications, recognising when asthma is not controlled and knowing when and how to seek emergency advice Efforts to minimise exposure to allergens and second-hand smoke should be emphasised especially in young people with asthma

54 NRAD New findings: Chronic asthma with fixed airflow obstruction – new READ Code: H335. Mean age of diagnosis 37 yrs (70% diagnosed > 15 yrs) … and …

55 Asthma Deaths - Confidential Enquiries Potentially preventable or avoidable factors contributing to death from asthma : identified nearly 50 years ago: Failure to recognise risk status Failure to recognise severity – 1979 Underuse of corticosteroids – 1963, 1975, 1979 Lack of Patient Education – 1963 Underuse of objective measures – 1963 Inadequate routine management and follow-up – 1979 Potentially preventable deaths – (77%) 1979 BMJ 1976;2:721; BMJ 1976;1:1493; BMJ 1980;280:687; BMJ 1982;285(6354):1570-1

56 Supporting partners Eastern Region Confidential Enquiry of Asthma Deaths

57 Acknowledgements Colleagues on the NRAD Core team Rachael Andrews Programme coordinator Hannah Evans Medical statistician Jenny Gingles Northern Ireland Debora Miller Northern Ireland Rosie Houston Programme manager (until February2013) Navin Puri Programme manager (from February 2013) Laura Searle Program Administrator (until October 2013) Strategic Advisory Group (Robert Winter) ; RCP Rhona Buckingham & Kevin Stewart (CEEU) Steering Group (Derek Lowe) ; Expert Advisors ; Panel members ; Hospital co- ordinators ; HQIP (Jenny Mooney) ; Hannah Bristow (RCP Press Team) Craig Bell (Scotland), Jenny Gingles (NI) and Karen Gully (Wales) Writers group – Caia Francis, Shuaib Nasser, Jimmy Paton and Mike Thomas Those who died from asthma & the clinicians who returned data


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