Why asthma still kills
National Review of Asthma
Deaths (NRAD) www.rcplondon.ac.uk/NRAD
Mark L Levy FRCGP
6.5.2014
Clinical Lead, 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 & Objectives
Death Certification
Methodology
Demographics and audit data
Panel Conclusions & Avoidable factors
Key messages
Key recommendations
Acknowledgements
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 selfmanagement
(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 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
Lecture plan – NRAD Report
Aim & Objectives
Death Certification
Methodology
Demographics and audit data
Panel Conclusions & Avoidable factors
Key messages
Key recommendations
Acknowledgements
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:
Ia Respiratory Failure
Ib Asthma
Ic Chest infection
Ia Chest infection
OR
II Asthma, IBS, Liver
failure, sepsis
The underlying cause of death (UCD) is determined to be Asthma
The underlying cause of death (UCD) is also Asthma
Lecture plan – NRAD Report
Aim & Objectives
Death Certification
Methodology
Demographics and audit data
Panel Conclusions & Avoidable factors
Key messages
Key recommendations
Acknowledgements
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)
www.rcplondon.ac.uk/nrad
NRAD flow diagram - 1
Asthma mentions
MCCD* (3544)
Excluded – not underlying
cause of death or >75 and
asthma in part II (2644)
No data (145)
Included (900)
Insufficient
data (127)
Not asthma
(352)
Confidential
enquiry (276)
* MCCD= Medical Certificate of Cause of Death
www.rcplondon.ac.uk/nrad
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
Asthma mentions MCCD
(3544)
Excluded – not underlying
cause of death or >75 and
asthma in part II (2644)
Included (900)
Insufficient
data (127;
14%)
No data (145;
16%)
Clinical
Lead
& Expert panel
Confidential
enquiry (276;
31%)
www.rcplondon.ac.uk/nrad
Not asthma
(352; 39%)
NRAD flow diagram - 3
Asthma mentions MCCD
(3544)
Excluded – not underlying
cause of death or >75 and
asthma in part II (2644)
No data (145;
16%)
Included (900)
Insufficient
data (127;
14%)
Confidential
enquiry (276;
31%)
www.rcplondon.ac.uk/nrad
Not asthma death
(352; 39%)
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
MCCDs ONS/NISRA/NRS
Panel assessor conclusions
and potential avoidable
factors
Audit data
extracted
from medical
records
Information provided by
clinicians
Clinical notes
(primary &
secondary
care &
paramedics)
Post mortem
Audit data and Panel conclusions … therefore
reports
denominators vary in the report
www.rcplondon.ac.uk/nrad
Lecture plan – NRAD Report
Aim & Objectives
Death Certification
Methodology
Demographics and audit data
Key messages
Key recommendations
Acknowledgements
LOCATION OF DEATH
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
Moderate
Severe
14 (9%)
76 (49%)
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?
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%) 37 (19%) 44 (23%) 112 (57%) -
no record of asthma review 12 mths
had assessment of asthma control
had Personal Asthma Action Plans (PAAP)
not under specialist supervision
www.rcplondon.ac.uk/nrad
Excessive GP prescribing of Short Acting
Beta-Agonist Bronchodilators (SABAs)
(n= 189/194 ; 97%)
Excess need for reliever medication (SIGN/BTS) = Poor
asthma control
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
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 & Objectives
Death Certification
Methodology
Demographics and audit data
Panel Conclusions & Avoidable factors
Key messages
Key recommendations
Acknowledgements
Main conclusions for the 276 cases
considered by panels
People who died from asthma
People who did not have asthma
People who had asthma but did not die from it
Insufficient information:
- To decide whether the person had asthma
- To decide whether the person died of asthma
195 (71)
27 (10)
36 (13)
14 (5)
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)
Good practice
31 (16)
1 (4)
Room for improvement - aspects of clinical care
51 (26)
8 (29)
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)
d) Overall standard of asthma care for the patient
Room for improvement - aspects of organisational care
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)
Good practice
31 (16)
1 (4)
Room for improvement - aspects of clinical care
51 (26)
8 (29)
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)
d) Overall standard of asthma care for the patient
Room for improvement - aspects of organisational care
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 )
Did not recognise high-risk status
Lack of specific asthma expertise
Did not perform adequate asthma review
Did not refer to another appropriate team member
Failure to take appropriate medication in month before death
Failure to take appropriate medication in year before death
Over prescribed short acting beta agonist bronchodilator
Poor or inadequate implementation of policy/pathway/protocol
Lack of knowledge of guidelines
Did not adhere to medical advice
www.rcplondon.ac.uk/nrad
n
21
17
16
16
15
13
13
13
12
10
Potential avoidable factors identified by panels
related to the patient their family and the
environment
One or more avoidable factors
Poor adherence to advice
Psychosocial factors
Smoker or exposed to second hand
smoke
Allergy
All ages
(n=195)
n(%)
126(65)
94(48)
51(26)
< 10 yrs
(n=10)
n(%)
9(90)
9(90)
3(30)
10-19 yrs
(n=18)
n(%)
17(90)
13(72)
4(22)
47(24)
3(30)
(7(39)
23(12)
2(20)
7(39)
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
One or more avoidable factors
Avoidable prescribing factor
Primary Care (n=195)
n(%)
137 (70)
92 (47)
Secondary Care (n=83)
n(%)
24 (29)
12 (14)
Lack of adherence to guidelines
115 (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.
The panels identified potential avoidable factors
related to the assessment of the final attack
Primary
Care (n=38)
n(%)
≥ 1 factors
13(34)
Secondary < 10 yrs Sec Care
Care (n=59)
(n=2)
n(%)
n(%)
20(34)
1(50)
10-19 yrs Sec
Care (n=5)
n(%)
1(20)
NRAD Recommendation:
• Every NHS hospital and general practice - clinical lead for asthma services
responsible for formal training in acute asthma care
The panels identified potential avoidable factors
related to the management of the final attack
≥ 1 factors
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(%)
12(32)
20(34)
1(50)
1(100)
2(40)
• 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
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 & Objectives
Death Certification
Methodology
Demographics and audit data
Panel Conclusions & Avoidable factors
Key messages
Key recommendations
Acknowledgements
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 & Objectives
Death Certification
Methodology
Demographics and audit data
Panel Conclusions & Avoidable factors
Key messages
Key recommendations
Acknowledgements
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 …
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
www.consultmarklevy.com
Supporting partners
Eastern Region
Confidential Enquiry
of Asthma Deaths
Acknowledgements
Colleagues on the NRAD Core team
Rachael Andrews
Hannah Evans
Jenny Gingles
Debora Miller
Rosie Houston
Navin Puri
Laura Searle
Programme coordinator
Medical statistician
Northern Ireland
Northern Ireland
Programme manager (until February2013)
Programme manager (from February 2013)
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 coordinators ; 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