6.5.2014

Mark L Levy FRCGP Clinical Lead, NRAD

Why asthma still killsNational Review of Asthma Deaths (NRAD) www.rcplondon.ac.uk/NRAD

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

Supporting partners

Eastern Region Confidential Enquiry

of Asthma Deaths

Lecture plan – NRAD Report

Aim & ObjectivesDeath CertificationMethodologyDemographics and audit dataPanel Conclusions & Avoidable factorsKey messagesKey recommendationsAcknowledgements

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)

www.rcplondon.ac.uk/nrad

Objectives of the NRAD

1. Conduct a multidisciplinary, confidential enquiry of asthma deaths Feb 2012 - Jan 2013

1. effectiveness of the management of asthma (acute and chronic)

2. Identify potential avoidable factors3. Make recommendations for changes - to reduce the

number of preventable asthma deaths2. Understand the effect of asthma and death from

asthma on families and carers

Lecture plan – NRAD Report

Aim & ObjectivesDeath CertificationMethodologyDemographics and audit dataPanel Conclusions & Avoidable factorsKey messagesKey recommendationsAcknowledgements

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 AsthmaThe 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

Lecture plan – NRAD Report

Aim & ObjectivesDeath CertificationMethodologyDemographics and audit dataPanel Conclusions & Avoidable factorsKey messagesKey recommendationsAcknowledgements

NRAD Notification(Section 251 of the NHS Act 2006)

www.rcplondon.ac.uk/nrad

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)

NRAD flow diagram - 1

www.rcplondon.ac.uk/nrad

* MCCD= Medical Certificate of Cause of Death

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

www.rcplondon.ac.uk/nrad

NRAD flow diagram - 2

www.rcplondon.ac.uk/nrad

Clinical Lead

& Expert panel

NRAD flow diagram - 3

www.rcplondon.ac.uk/nrad

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

www.rcplondon.ac.uk/nrad

Sources of data

www.rcplondon.ac.uk/nrad

Audit data and Panel conclusions … therefore denominators vary in the report

Lecture plan – NRAD Report

Aim & ObjectivesDeath CertificationMethodologyDemographics and audit dataKey messagesKey recommendationsAcknowledgements

LOCATION OF DEATH

PatientsDuration 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%)

Definition of severity of asthma:

‘Amount of treatment required to gain control of the asthma’

European respiratory Journal 2008;32(3):545-54

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

www.rcplondon.ac.uk/nrad

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

www.rcplondon.ac.uk/nrad

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

www.rcplondon.ac.uk/nrad

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

www.rcplondon.ac.uk/nrad

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

www.rcplondon.ac.uk/nrad

Excess need for reliever medication (SIGN/BTS) = Poor asthma control

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%)

www.rcplondon.ac.uk/nrad

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

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 *

www.rcplondon.ac.uk/nrad

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

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

Lecture plan – NRAD Report

Aim & ObjectivesDeath CertificationMethodologyDemographics and audit dataPanel Conclusions & Avoidable factorsKey messagesKey recommendationsAcknowledgements

Main conclusions for the 276 cases considered by panels

People who died from asthma 195 (71)People who did not have asthma 27 (10)People who had asthma but did not die from it 36 (13)Insufficient information: - To decide whether the person had asthma 14 (5) - To decide whether the person died of asthma 4 (1)

Overall assessment by panels: Quality of care

All 195 (Adequate)

n(%)

< 20 years (n=28) (adequate)

n(%)

a) Quality of care: Routine/chronic management 56 (29) 2 (7)

b) Quality of care: Management of attacks in the past 69 (35) 8 (29)

c) Quality of care: Management of the final attack 66 (34) 13 (46)

d) Overall standard of asthma care for the patient

Good practice 31 (16) 1 (4)

Room for improvement - aspects of clinical care 51 (26) 8 (29)

Room for improvement - aspects of organisational care 6 (3) 2 (7)

Room for improvement - aspects of clinical and organisational care 45 (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)

www.rcplondon.ac.uk/nrad

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 management 56 (29) 2 (7)

b) Quality of care: Management of attacks in the past 69 (35) 8 (29)

c) Quality of care: Management of the final attack 66 (34) 13 (46)

d) Overall standard of asthma care for the patient

Good practice 31 (16) 1 (4)

Room for improvement - aspects of clinical care 51 (26) 8 (29)

Room for improvement - aspects of organisational care 6 (3) 2 (7)

Room for improvement - aspects of clinical and organisational care 45 (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)

www.rcplondon.ac.uk/nrad

Major factors identified by panels(i.e. contributed significantly to the deaths, where different management

would reasonably be expected to have affected the outcome )

www.rcplondon.ac.uk/nrad

nDid not recognise high-risk status 21Lack of specific asthma expertise 17Did not perform adequate asthma review 16Did not refer to another appropriate team member 16Failure to take appropriate medication in month before death 15Failure to take appropriate medication in year before death 13 Over prescribed short acting beta agonist bronchodilator 13Poor or inadequate implementation of policy/pathway/protocol 13Lack of knowledge of guidelines 12Did not adhere to medical advice 10

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

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.

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(%)

10-19 yrs Sec Care (n=5)

n(%)

≥ 1 factors 13(34) 20(34) 1(50) 1(20)

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(%)

10-19 prim care(n=1)n(%)

10-19 sec care(n=5)n(%)

≥ 1 factors 12(32) 20(34) 1(50) 1(100) 2(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

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

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

Post mortem analysis• Planned publication as a separate

paper• Data available on the RCP website as

appendix

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

Lecture plan – NRAD Report

Aim & ObjectivesDeath CertificationMethodologyDemographics and audit dataPanel Conclusions & Avoidable factorsKey messagesKey recommendationsAcknowledgements

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

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

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

Lecture plan – NRAD Report

Aim & ObjectivesDeath CertificationMethodologyDemographics and audit dataPanel Conclusions & Avoidable factorsKey messagesKey recommendationsAcknowledgements

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

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

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

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

NRAD New findings:• Chronic asthma with fixed airflow obstruction – new

READ Code: H335.• Mean age of diagnosis 37 yrs (70% diagnosed > 15 yrs)• … and …

www.consultmarklevy.com

Asthma Deaths - Confidential Enquiries

• Potentially preventable or avoidable factors contributing to death from asthma : identified nearly 50 years ago:

• Failure to recognise risk status - 1963-1974• 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

Supporting partners

Eastern Region Confidential Enquiry

of Asthma Deaths

AcknowledgementsColleagues on the NRAD Core teamRachael Andrews Programme coordinatorHannah Evans Medical statisticianJenny Gingles Northern IrelandDebora Miller Northern IrelandRosie 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 ThomasThose who died from asthma & the clinicians who returned data