Nrad Full Report
Nrad Full Report
Nrad Full Report
Eastern
Region
Confidential
Enquiry
of
Asthma
Deaths
Commissioned by:
NRAD Prelims 22/4/14 10:14 Page ii
Healthcare Quality Improvement Partnership (HQIP) and the Clinical Outcome Review Programmes (CORP)
The Healthcare Quality Improvement Partnership (HQIP) is led by a consortium of the Academy of Medical Royal Colleges, the Royal
College of Nursing (RCN) and National Voices. HQIP’s aim is to increase the impact that clinical audit has on healthcare quality and
stimulate improvement in safety and effectiveness by systematically enabling clinicians, managers and policy-makers to learn from adverse
events and other relevant data.
Citation for this report: Royal College of Physicians. Why asthma still kills: the National Review of Asthma Deaths (NRAD) Confidential
Enquiry report. London: RCP, 2014.
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addressed to the publisher.
ISBN 978-1-86016-531-3
eISBN 978-1-86016-532-0
www.rcplondon.ac.uk
Registered Charity No 210508
Contents
Acknowledgements vi
Foreword vii
Who is this report for? viii
Executive summary ix
Key findings ix
Key recommendations xi
Recommendations matrix xiii
List of tables and figures xxii
Chapter 1 – Introduction 1
Features of asthma 1
Psychosocial aspects 1
Epidemiology of asthma in the UK 2
Asthma deaths in the UK 2
Previous studies on asthma deaths 3
The National Review of Asthma Deaths (NRAD) 4
Chapter 8 – Key findings and advice for patients and carers, and recommendations for
primary care organisations 55
Key findings and advice for patients and carers by Asthma UK 55
Key findings and recommendations for primary care by PCRS-UK 59
References 63
Glossary and abbreviations 67
NRAD groups and contributors 73
Contents
Acknowledgements
This work could not have been achieved without the support of a wide range of partner organisations
and individuals that have contributed to the National Review of Asthma Deaths (NRAD). Our particular
thanks go to those listed in the NRAD groups and contributors section of this report on p 73. Thanks are
also due to all of the audit leads, clinical leads and healthcare professionals within the participating
hospitals and GP practices, who provided data.
Foreword
Executive summary
Advancements in drug treatments, applied research and the development of evidence-based clinical
guidelines have contributed to the reduction of deaths from asthma over the past 50 years.
Previous confidential enquiries have suggested that avoidable factors play a part in as many as three-
quarters of cases of asthma death. These studies have often been small, conducted locally and undertaken
at a considerable time after death. The National Review of Asthma Deaths (NRAD), reported here, is the
first national investigation of asthma deaths in the UK and the largest study worldwide to date. Work on
the NRAD was undertaken over a 3-year period and was one element of the Department of Health in
England’s Respiratory Programme. The primary aim of the NRAD was to understand the circumstances
surrounding asthma deaths in the UK in order to identify avoidable factors and make recommendations
to improve care and reduce the number of deaths.
Asthma deaths occurring between February 2012 and January 2013 were identified through the Office for
National Statistics (ONS) for England and Wales, the Northern Ireland Statistics and Research Agency
(NISRA) and the National Records of Scotland (NRS). Extensive information about each death was sought
from multiple sources, including primary, secondary and tertiary care, as well as ambulance, paramedic and
out-of-hours care providers. 374 local coordinators were appointed in 297 hospitals across the NHS to
collect and submit information to the project team, and 174 expert clinical assessors were recruited from
primary, secondary and tertiary care throughout the UK to join expert panels that reviewed data. Each
assessor participated in one or more expert panels, during which all information gathered on each death,
including post-mortem reports, was reviewed by two assessors in detail, and this was followed by discussion
and a consensus agreement of avoidable factors and recommendations by the whole panel.
Data were available for analysis on 195 people who were thought to have died from asthma during the
review period and the key findings relate to this group. Denominators vary according to where data were
missing.
Key findings
1 During the final attack of asthma, 87 (45%) of the 195 people were known to have died without
seeking medical assistance or before emergency medical care could be provided.
2 The majority of people who died from asthma (112, 57%) were not recorded as being under specialist
supervision during the 12 months prior to death. Only 83 (43%) were managed in secondary or
tertiary care during this period.
3 There was a history of previous hospital admission for asthma in 47% (90 of 190).
4 Nineteen (10%) of the 195 died within 28 days of discharge from hospital after treatment for asthma.
5 At least 40 (21%) of the 195 people who died had attended a hospital emergency department with
asthma at least once in the previous year and, of these, 23 had attended twice or more.
1 Personal asthma action plans (PAAPs), acknowledged to improve asthma care, were known to be
provided to only 44 (23%) of the 195 people who died from asthma.
2 There was no evidence that an asthma review had taken place in general practice in the last year before
death for 84 (43%) of the 195 people who died.
3 Exacerbating factors, or triggers, were documented in the records of almost half (95) of patients; they
included drugs, viral infections and allergy. A trigger was not documented in the other half.
4 Of 155 patients for whom severity could be estimated, 61 (39%) appeared to have severe asthma.
Fourteen (9%) were being treated for mild asthma and 76 (49%) for moderate asthma. It is likely that
many patients who were treated as having mild or moderate asthma had poorly controlled
undertreated asthma, rather than truly mild or moderate disease.
5 The expert panels identified factors that could have avoided death in relation to the health
professional’s implementation of asthma guidelines in 89 (46%) of the 195 deaths, including lack of
specific asthma expertise in 34 (17%) and lack of knowledge of the UK asthma guidelines in 48 (25%).
1 There was evidence of excessive prescribing of reliever medication. Among 189 patients who were on
short-acting relievers at the time of death, the number of prescriptions was known for 165, and 65 of
these (39%) had been prescribed more than 12 short-acting reliever inhalers in the year before they
died, while six (4%) had been prescribed more than 50 reliever inhalers. Those prescribed more than
12 reliever inhalers were likely to have had poorly controlled asthma.
2 There was evidence of under-prescribing of preventer medication. To comply with recommendations,
most patients would usually need at least 12 preventer prescriptions per year. Among 168 patients on
preventer inhalers at the time of death, either as stand-alone or in combination, the number of
prescriptions was known for 128, and 49 of these (38%) were known to have been issued with fewer
than four and 103 (80%) issued with fewer than 12 preventer inhalers in the previous year.
3 There was evidence of inappropriate prescribing of long-acting beta agonist (LABA) bronchodilator
inhalers. From available data, 27 (14%) of those who died were prescribed a single-component LABA
bronchodilator at the time of death. At least five (3%) patients were on LABA monotherapy without
inhaled corticosteroid preventer treatment.
1 The expert panels identified factors that could have avoided the death related to patients, their families
and the environment in 126 (65%) of those who died. These included current tobacco smoking in
37 (19%), exposure to second-hand smoke in the home, non-adherence to medical advice and
non-attendance at review appointments.
2 Particularly in children and young people, poor recognition of risk of adverse outcome was found to
be an important avoidable factor in 7/10 (70%) children and 15/18 (83%) young people in primary
care, and in 2/7 (29%) children and 3/9 (33%) young people in secondary care.
Executive summary
3 The median age at the time of the initial diagnosis of asthma was 37 years. Most people who died, and
for whom this information was available, were diagnosed in adulthood, with 70/102 (69%) diagnosed
after the age of 15 years.
4 Psychosocial factors contributing to the risk of asthma death and its perception were identified by
panels in 51 (26%) of those who died, and included depression and mental health issues in 32 (16%)
and substance misuse in 12 (6%).
Key recommendations
1 Every NHS hospital and general practice should have a designated, named clinical lead for asthma
services, responsible for formal training in the management of acute asthma.
2 Patients with asthma must be referred to a specialist asthma service if they have required more
than two courses of systemic corticosteroids, oral or injected, in the previous 12 months or
require management using British Thoracic Society (BTS) stepwise treatment 4 or 5 to achieve
control.1
3 Follow-up arrangements must be made after every attendance at an emergency department or out-of-
hours service for an asthma attack. Secondary care follow-up should be arranged after every hospital
admission for asthma, and for patients who have attended the emergency department two or more
times with an asthma attack in the previous 12 months.
4 A standard national asthma template should be developed to facilitate a structured, thorough asthma
review. This should improve the documentation of reviews in medical records and form the basis of
local audit of asthma care.
5 Electronic surveillance of prescribing in primary care should be introduced as a matter of urgency to
alert clinicians to patients being prescribed excessive quantities of short-acting reliever inhalers, or too
few preventer inhalers.
6 A national ongoing audit of asthma should be established, which would help clinicians, commissioners
and patient organisations to work together to improve asthma care.
1 All people with asthma should be provided with written guidance in the form of a personal asthma
action plan (PAAP) that details their own triggers and current treatment, and specifies how to prevent
relapse and when and how to seek help in an emergency.
2 People with asthma should have a structured review by a healthcare professional with specialist
training in asthma, at least annually. People at high risk of severe asthma attacks should be monitored
more closely, ensuring that their personal asthma action plans (PAAPs) are reviewed and updated at
each review.
3 Factors that trigger or exacerbate asthma must be elicited routinely and documented in the medical
records and personal asthma action plans (PAAPs) of all people with asthma, so that measures can be
taken to reduce their impact.
4 An assessment of recent asthma control should be undertaken 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.
5 Health professionals must be aware of the factors that increase the risk of asthma attacks and death,
including the significance of concurrent psychological and mental health issues.
1 All asthma patients who have been prescribed more than 12 short-acting reliever inhalers in the
previous 12 months should be invited for urgent review of their asthma control, with the aim of
improving their asthma through education and change of treatment if required.
2 An assessment of inhaler technique to ensure effectiveness should be routinely undertaken and
formally documented at annual review, and also checked by the pharmacist when a new device is
dispensed.
3 Non-adherence to preventer inhaled corticosteroids is associated with increased risk of poor asthma
control and should be continually monitored.
4 The use of combination inhalers should be encouraged. Where long-acting beta agonist (LABA)
bronchodilators are prescribed for people with asthma, they should be prescribed with an inhaled
corticosteroid in a single combination inhaler.
Recommendations matrix
10:14
xiii
4 or 5 to achieve control1
NRAD Prelims
22/4/14
xiv
Recommendation NHS Pharmacists Primary Secondary Patients Policy-makers: Commissioners Professional
service healthcare healthcare and health and patient
10:14
Follow-up arrangements
must be made after every
attendance at an emergency
department or out-of-hours
service for an asthma attack.
Secondary care follow-up
should be arranged after P P P P
every hospital admission for
asthma, and for patients
who have attended the
emergency department two
or more times with an
asthma attack in the
previous 12 months
Electronic surveillance of
10:14
xv
Recommendations matrix
NRAD Prelims
22/4/14
xvi
Recommendation NHS Pharmacists Primary Secondary Patients Policy-makers: Commissioners Professional
service healthcare healthcare and health and patient
10:14
xvii
Recommendations matrix
NRAD Prelims
22/4/14
xviii
Recommendation NHS Pharmacists Primary Secondary Patients Policy-makers: Commissioners Professional
10:14
An assessment of inhaler
technique to ensure
effectiveness should be
routinely undertaken and
formally documented at P P P
annual review, and also
checked by the pharmacist
when a new device is
dispensed
Non-adherence to preventer
inhaled corticosteroids is
associated with increased
Page xix
P P P
risk of poor asthma control
and should be continually
monitored
xix
Recommendations matrix
NRAD Prelims
22/4/14
xx
Recommendation NHS Pharmacists Primary Secondary Patients Policy-makers: Commissioners Professional
10:14
Efforts to minimise
exposure to allergens and
second-hand smoke should P P P P
be emphasised, especially
in young people with asthma
Research recommendation
Further research is required
to confirm whether late- P P
onset asthma is a risk factor
for asthma death
xxi
Recommendations matrix
NRAD Prelims 22/4/14 10:14 Page xxii
Table 4.1 Number (%) of cases included in and excluded from the NRAD Confidential Enquiry 14
Table 4.2 Underlying cause of death in excluded cases where asthma was not coded as the 16
underlying cause of death
Table 4.3 Description of respiratory ICD-10U codes (ICD-10U codes J00–J99) in 184 excluded 17
cases where asthma was entered in Part II of the MCCD and not coded as the
underlying cause of death in Part I
Table 4.3.1 Description of the medical disease terms entered in Parts I and II of the MCCD for 514 18
people over the age of 75 years and excluded from the NRAD process, where asthma
was entered in Part II of the MCCD and coded as the underlying cause of death
Table 4.3.2 Examples of MCCDs from the 382 of the 514 people aged 75 years and over who were 19
excluded from the NRAD process, where asthma was entered in Part II of the MCCD
and coded as the underlying cause of death but where other medical conditions were
also entered in Part II
Table 4.4.1 Demographic and personal characteristics of 195 people who, the panels concluded, 20
died from asthma
Table 5.1 Processes and assessments undertaken in 135 general practices during an asthma 27
review
Table 5.2 Details of current management of 195 patients who died from asthma 28
Table 5.3 Overall asthma and allergy characteristics of 195 patients who died from asthma 32
Table 5.4 Current medication of 195 patients who died from asthma 34
Table 6.2 Expert multidisciplinary panel conclusions on the quality of care for patients who died 40
from asthma
Table 6.3.1 Avoidable factors related to the patient or family and their environment 42
Table 6.3.2 Potentially avoidable factors identified by panels in routine medical care and ongoing 44
supervision and monitoring in primary and secondary care in the 12 months before
death
Table 6.3.3 Potentially avoidable factors identified by the panels on the assessment of patients 46
and recognition of their risk status in primary and secondary care
Table 6.3.4 Potentially avoidable factors during assessment of final attack and access to care in 47
primary and secondary care
Table 6.3.5 Potentially avoidable factors related to management or treatment of final attack in 49
primary and secondary care
Fig 1.1 Deaths attributed to asthma. Males and females combined, 0–19 years, 3
UK 1979–2011
Fig 1.2 Deaths attributed to asthma. Males and females combined, 20+ years, 3
UK 1979–2011
Fig 4.1 NRAD consort diagram showing the numbers of cases with a mention of asthma on 15
the MCCD, those meeting NRAD eligibility criteria and the medical case notes
returned
Fig 4.2 Geographical locations of where deaths occurred across the country 22
Fig 4.3.5 Percentage of cases by age group where the panel agreed that the clinical findings 25
matched the coding of asthma as the underlying cause of death by the Office for
National Statistics (ONS) for England and Wales, the Northern Ireland Statistics and
Research Agency (NISRA) or the National Records of Scotland (NRS)
Fig 5.1 Frequencies of SABA prescriptions issued for patients in the 12 months before death 33
from asthma
Fig 5.2 Frequencies of ICS prescriptions issued for cases in the 12 months before death from 35
asthma
Fig 5.3 Frequencies of ICS/LABA prescriptions issued for patients in the 12 months before 36
death from asthma
Fig 7.2 Distribution of deaths across the seasons for the NRAD cases 54
Chapter 1 – Introduction
Features of asthma
Asthma is a common, multifactorial and often chronic (long-term) respiratory illness that can result
in episodic or persistent symptoms and in episodes of suddenly worsening wheezing (asthma attacks,
or exacerbations) that can prove fatal. The British Thoracic Society/Scottish Intercollegiate Guidelines
Network (BTS/SIGN) asthma guideline highlights that the diagnosis of asthma is based on clinical
features with support from objective findings; there is no standardised definition of the type, severity
or frequency of symptoms, nor of any investigation findings, which can be variable.1 The absence of a
‘gold standard’ test makes it difficult to confirm or refute the diagnosis of asthma. Therefore, asthma
diagnosis is usually based on one or more typical features, including: respiratory symptoms; evidence
of variable airflow obstruction using lung function tests; and the person’s response to asthma
medication. Symptoms of asthma include the intermittent presence of wheeze, breathlessness, chest
tightness and cough. Airflow obstruction results from airway hyper-responsiveness (or twitchiness of
the muscles in the airways), and inflammation resulting in swelling of the airway walls as well as
accumulation of secretions within. Symptoms are usually episodic and may vary over time. Asthma is
triggered by many factors, including: viral infections; exercise; substances (called allergens) that cause
allergic reactions, either aero-allergens (such as house dust mites, pollens, fungal spores or animal
dander) or oral allergens (such as eggs, fish, milk or nuts). Other triggers include medicines including
aspirin and non-steroidal anti-inflammatory drugs (NSAIDs), eg ibuprofen and naproxen, and
environmental factors such as tobacco smoke, dust and fumes, and air pollutants, as well as climatic
variation.
The underlying pathological process resulting in the features of asthma vary between individuals. Hence,
each person’s asthma has different characteristics and pattern of triggers and their response to treatment
may also vary. People with asthma also experience uncontrolled episodes or attacks that too can vary
between and within individuals. These asthma attacks at their worst can be life threatening or, more
rarely, fatal. In order to ensure that people with asthma are free from symptoms and attacks and are able
to lead a normal, active life, each patient should have their asthma triggers identified and treatment
tailored to their needs.
Psychosocial aspects
There is a well-recognised link between asthma and psychosocial problems; the prevalences of anxiety,
depression and panic disorder are much higher in people with asthma than in matched controls and are
associated with poor outcomes.1,2 The association between impaired psychological health status and
asthma outcomes, including mortality (death), has been known by researchers for many years.
Furthermore, disadvantaged socio-economic and ethnic groups have particularly poor outcomes. For
example, those with asthma who also have depression or anxiety experience more asthma symptoms and
have worse outcomes in terms of higher use of healthcare resources, less successful emergency treatment
and more frequent admission to hospital. Adherence to preventative treatment is reduced in people with
psychological dysfunction.
The number of people affected by asthma in the UK is amongst the highest in the world. According to
Asthma UK and other sources, up to 5.4 million people in the UK are currently receiving treatment for
asthma.3–5 It accounts for high numbers of consultations in primary care, out-of-hours services and
hospital emergency departments. During 2011–2, there were over 65,000 hospital admissions for asthma
in the UK (Table 1.1).
Sources: Scotland: Scottish Morbidity Record, Information Services Division, NHS Scotland; England: Hospital Episode Statistics,
Health & Social Care Information Centre; Wales: Health Services Wales; Northern Ireland: Hospital Inpatient System, Northern
Ireland Department of Health, Social Services and Public Safety
The number of deaths from asthma in the UK has fluctuated over the past 50 years. A peak during
the 1960s affected all age groups, although most noticeably younger people, and was attributed to
avoidable medical factors, particularly the introduction of unselective beta agonist bronchodilator
reliever inhalers, which had adverse cardiovascular effects.6,7 An unexplained increase in the number
of deaths occurred in the early 1980s, peaking in 1998, this time affecting older age groups (Fig 1.1
and 1.2).
The number of reported asthma deaths in the UK remains amongst the highest in Europe.8,9
Comparisons of international asthma death rates for 5- to 34-year-olds during 2001–10 show that the
UK asthma mortality is one of the highest in Europe, and comparable with those for Australia, New
Zealand and the USA.
Chapter 1 – Introduction
Fig 1.1 Deaths attributed to asthma. Males and females combined, 0–19 years, UK 1979–2011
12
Deaths per million population
10
0
1979 1981 1983 1985 1987 1989 1991 1993 1995 1997 1999 2001 2003 2005 2007 2009 2011
Year
Fig 1.2 Deaths attributed to asthma. Males and females combined, 20+ years, UK 1979–2011
NRAD FIG 1.1
20–44 years 45–64 years 65–74 years 75+ years
250
200
Deaths per million population
150
100
50
0
1979 1981 1983 1985 1987 1989 1991 1993 1995 1997 1999 2001 2003 2005 2007 2009 2011
Since the 1960s, several investigations into the circumstances of deaths from asthma have been
completed. These included confidential enquiries (based on asthma deaths only) and case–control
studies (in which there was a comparison group of non-fatal asthma controls).10–19 These studies have
tended to be limited to younger age groups, and considered cases have been spread over a number of
years. Furthermore, most of these investigations were undertaken retrospectively, with a considerable
interval between the deaths and the enquiries; one notable exception is the currently ongoing
confidential enquiry in the Eastern region of the UK into asthma deaths.10
In the early 1980s, the British Thoracic Association (BTA), now known as the British Thoracic Society
(BTS), raised awareness of asthma deaths both in the UK and internationally by publishing its
confidential enquiry into 90 people who died from asthma in 1979, in two regions of England.15 The
authors concluded that there were avoidable factors in 79% of the deaths, including poor recognition of
severity by both patients and healthcare professionals as well as undertreatment. An international task
force on asthma death and a publication highlighting problems related to hospital management of acute
asthma attacks in the late 1980s resulted in the formulation of British and subsequently international
guidelines on the management of asthma.20,21 Sadly, subsequent regional asthma death confidential
enquiries have repeatedly identified potentially avoidable factors that preceded most asthma deaths.
Examples of avoidable factors related to asthma deaths include: long-term undertreatment of asthma;
under-assessment of asthma severity; problems with routine management with a failure to follow
guidelines and delays in referral to specialists; failure to follow up people after severe asthma attacks; and
lack of patient education and provision of personal asthma action plans (PAAPs). Previous studies also
identified that many people who die from asthma fail to adhere to medical advice, particularly related to
attending routine review appointments and taking regular preventer medication for asthma
(Appendix 9 – Literature review of key findings in asthma death confidential enquiries and studies).
The most recent publication by the ongoing Eastern Region Confidential Enquiry (2012) reported some
additional factors that were deemed to have contributed to deaths from asthma.22 These include:
• a summer seasonal peak of deaths, particularly in those aged below 40 years
• some evidence of clustering of deaths around thunderstorms in late summer
• allergic factors such as pet ownership in children
• intolerance to non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, in patients with
severe late-onset non-allergic asthma (ie that developed later in life).
The Royal College of Physicians (RCP) was commissioned to deliver the National Review of Asthma
Deaths (NRAD) by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS
England, NHS Wales, the Health and Social Care Division of the Scottish Government and the Northern
Ireland Department of Health, Social Services and Public Safety (DHSSPS). The review was delivered
under the auspices of the Clinical Effectiveness and Evaluation Unit (CEEU) within the Clinical
Standards Department at the RCP.
While other asthma confidential enquiries have been undertaken regionally, the NRAD was the first
UK-wide investigation of asthma deaths, and the largest worldwide study of this kind to date. Data were
derived from multiple sources, including primary, secondary and tertiary care, as well as ambulance
paramedic and out-of-hours care providers.
The aim and objectives were developed by a multidisciplinary steering group, which included asthma
clinicians from primary and secondary care, statisticians, allergists, epidemiologists, government
representatives, patient organisations, pathologists and national leads in respiratory disease. The NRAD
was undertaken over a 3-year period from May 2011 to May 2014. It reviewed information on all
certified asthma and anaphylaxis deaths occurring in the UK between February 2012 and January 2013.
Aim
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.
Objectives
1 Conduct a multidisciplinary, confidential enquiry to investigate the circumstances and clarify the cause
of death in those people meeting the study inclusion criteria.
2 Examine the effectiveness of the management of asthma by reviewing the quality of care during the
fatal attack, as well as previous treatment, against standards derived principally from the British
Thoracic Society/Scottish Intercollegiate Guidelines Network (BTS/SIGN) British Guideline on the
Management of Asthma (2012).1
3 Identify potentially avoidable factors related to the circumstances of those asthma deaths.
4 Make recommendations for changes in clinical management in order to reduce the number of
preventable deaths from asthma in the future.
5 Understand the effect of asthma and death from asthma on families and carers of people with asthma
by interviewing bereaved relatives on their experiences of the care provided to the family member who
died.
The NRAD steering group agreed protocols for the confidential enquiry and family interviews.
Notification and data collection forms for clinicians and emergency services were developed and
tested for usability by steering group members, by a GP with recent experience of an asthma death
in her practice and by a number of secondary care clinicians and members of the NRAD
implementation group.
A family interview schedule was developed and agreed by contacting the bereaved families working
group. Advice line specialist nurses working for Asthma UK were trained to pilot and subsequently
conduct the interviews.
A modified DELPHI method was used to develop 25 indicators of quality of asthma care to be used
by the NRAD enquiry panels, together with the BTS/SIGN British Guideline on the Management of
Asthma (2012), for the evaluation of the cases that they were asked to review. These indicators are
shown in Table 3.1.1,23
1 Patients diagnosed with asthma should have at least one annual review by a health professional competent to
do so.
2 An asthma review should include assessment of control, medication review and adjustment if necessary;
education, and issue, review or modification of a written asthma action plan, inhaler technique checking,
discussion around adherence and prescription filling and allergies (actions should be recorded).
3 Patients with diagnosed asthma should have an entry in the medical record that the patient has been given a
written personal asthma action plan (PAAP).
5 Patients should attend their planned review consultations for their asthma.
6 Patients with acute or deteriorating asthma should obtain access to medical attention within 24 hours.
7 For patients with severe asthma, there should be evidence in the record of a review of the patient’s adherence
to medication.
8 Patients prescribed more than six reliever inhalers in the previous 12 months should be on preventer treatment
as well.
9 Patients with severe or life-threatening asthma attacks should have evidence of initial, and ongoing and
repeated observations of recorded vital signs pre and post treatment, including SpO2/arterial blood gases and
lung function (with reasons stated if not measured).
10 The initial assessment of a patient presenting with an asthma exacerbation should include information
on previous attacks (including previous life-threatening attacks and intensive therapy unit (ITU)
admissions).
11 When a patient with asthma presents with new or worsening respiratory symptoms, the medical records
should include a note of the presenting symptoms, response to medication given or taken, and the current
medication.
12 Assessment of patients presenting acutely with new or worsening respiratory symptoms should include: pulse;
respiratory rate; pulse oximetry; lung function (peak expiratory flow (PEF) or spirometry); auscultation of the
chest; and blood pressure (BP) measurement.
13 Patients attending a GP surgery, out-of-hours centre or hospital department with an asthma attack should be
seen and initially treated with bronchodilators within half an hour.
14 Patients with life-threatening asthma attacks should be treated with oxygen-driven nebulised
bronchodilators.
15 Patients treated in hospital for life-threatening or severe acute asthma should be treated with systemic
steroids within 1 hour of arrival (if not administered before reaching hospital).
16 Patients treated for a severe or life-threatening asthma attack should be prescribed systemic steroids.
18 There should be evidence of a structured discharge plan (to include medication, education and follow-up)
following hospital admission for an asthma attack.
19 Patients should be provided with a new or updated personal asthma action plan (PAAP) immediately following
treatment or within 48 hours after an asthma attack.
20 Inhaler technique: there should be a record of assessment of inhaler technique when patients are evaluated
following an asthma attack.
21 Hospital staff should inform the GP of follow-up plan and management within 48 hours of discharge of
patients following an asthma attack.
22 Hospital discharge letters following an asthma attack should detail presenting history, treatment,
post-discharge treatment and follow-up plans.
23 There should be evidence that a structured management plan (to include medication, education and
follow-up) has been given to the patient following treatment in primary care or accident and emergency for
acute asthma.
24 Patients who have been treated for an asthma attack should be prescribed regular inhaled corticosteroids.
25 Adult patients admitted with acute asthma should not be discharged ideally until peak expiratory flow (PEF)
>70% best or predicted (if no previous record of PEF).
Death certification
The inclusion or exclusion of cases in the NRAD was determined by death certificate entries and
subsequent review of medical records. Death certificates, also known as Medical Certificates of Cause of
Death (MCCDs), are completed as a statutory duty of the doctor who last attended the patient. In
accordance with World Health Organization (WHO) recommendations in the International Statistical
Classification of Diseases and Related Health Problems 10th revision (ICD-10), the death certificate
comprises two parts:24,25
• Part I, which comprises three subsections and captures information as follows:
– Ia, the disease or condition leading directly to death
– Ib, other disease or condition, if any, leading to Ia
– Ic, other disease or condition, if any, leading to Ib.
• Part II, which captures information where there were other significant conditions, contributing to
death, but not related to the disease or condition causing it.
The MCCD is used by national statistics departments to determine the ‘underlying cause of death’, also
known as the ‘underlying cause mortality’.24,25 In the UK, the responsible departments are the Office for
National Statistics (ONS) for England and Wales, the Northern Ireland Statistics and Research Agency
(NISRA) and the National Records of Scotland (NRS).
Included:
• people who died between 1 February 2012 and 31 January 2013
• people under 75 years old, and whose underlying cause of death was classified by national
data-recording agencies of the four nations (ONS, NISRA or NRS) as asthma or anaphylaxis
(ie ICD-10U – J45–J46, T78.2); or
• people aged 75 years or more who had asthma or anaphylaxis in Part I of the MCCD or where
asthma death was confirmed by post-mortem.
Excluded:
• people aged 75 years or more, who had asthma in Part II of the MCCD that was classified as the
underlying cause of death.
The steering group excluded this cohort because the likelihood of a ‘true’ asthma death was low and
resources did not permit detailed assessment of every case. It is likely that some of these did include
deaths from asthma. However, the NRAD was not an epidemiological study.
The national organisations (ONS, NISRA and NRS) notified the project team of asthma deaths on a
monthly basis, but some notifications also came directly from health professionals, coroners, families
and others aware of the enquiry. This included 374 local coordinators who were appointed in 297
hospitals. Those cases that met the NRAD criteria were selected for further consideration by the
NRAD.
Notification of deaths with ‘asthma’ anywhere on the Medical Certificate of Cause of Death (MCCD) Part I or II
Office of National Statistics (ONS); National Records of Scotland (NRS);
Northern Ireland Statistics and Research Agency (NISRA)
Stage 1: Excluded from further request Stage 2: Excluded from further request
for information because: for information because:
asthma in Part II of the death certificate $75 years AND asthma in Part II
AND AND
asthma not coded as underlying cause of asthma coded as underlying cause of
death by ONS/NRS/NISRA death by ONS/NRS/NISRA
Data sources
Medical records and other information were requested from general practices, hospitals, emergency
services and coroners’ offices on all deaths meeting the inclusion criteria, including:
NRAD FIG 3.1
• a summary of details related to the person’s asthma and copies of records pertaining to the final attack
• 2 years of prescribing information, consultation records and copy of correspondence(s) between
specialists and GPs
• specific details of management of previous asthma attacks in primary and secondary care in the last
12 months (Appendices 3 and 5 – Forms A2 and B2)
• organisational details of primary care practices that cared for included cases
• copies of any local critical incident reviews on the deceased patients.
A letter from the NRAD clinical lead and the chair of Council of the Royal College of General
Practitioners (RCGP) accompanied all requests for information to encourage cooperation and emphasise
professional responsibility to participate in confidential enquiries.
Upon receipt of medical records and other information from colleagues, the NRAD clinical lead,
supported by a screening panel comprising retired asthma experts, selected cases for review by the
confidential enquiry panels. Cases were included based on the probability that:
i) the patient had asthma (such as early age of onset of symptoms; episodic respiratory symptoms;
objective evidence of variable airflow obstruction on lung function testing; response to asthma
treatment; and post-mortem findings)
ii) asthma possibly caused or contributed to the death. Cases were excluded if it was clear, either in the
records or from correspondence from the clinician managing the case before death, that asthma was
unlikely or there was a high probability that the patient did not die from asthma (Stage 4, Fig 4.1).
All children and young persons (under 20 years old) were included.
Environmental data
Environmental data were obtained by geographical location (postcodes) of all cases included for
consideration by the NRAD panels. In addition, weather data for the date of each death (day of death,
and the six preceding days) and the corresponding date 1 year previously for comparison were
obtained. These were supplied by the Met Office, the UK’s national weather service, and included:
• pollen concentrations (all available species)
• temperatures
• relative humidity
• concentrations of nitric oxide, nitrogen dioxide, ozone, PM10 particulate matter, sulphur dioxide
and carbon monoxide.
Fungal spore data were only available from one centre in Derbyshire and were provided courtesy of the
Institute for Lung Health at the University of Leicester. These data were used to provide an
approximation of fungal spore levels nationally.
Data validation
The monthly notifications of deaths from ONS and NRS, along with death certification data, were
recorded on a central NRAD database. Data from Northern Ireland were processed separately before
uploading to the database in order to comply with information governance regulations. Data from cases
not meeting the NRAD entry criteria were not uploaded to the database.
• a random 10% sample of all cases that had been selected for panel reviews were resubmitted for a
second review by a panel comprising different members who met on a different date
• one independent pathologist with expertise in the coronial process reviewed all available post-
mortem reports and a second reviewed alternate cases.
For full details of these analyses see Appendix 12 – Inter-rater reliability (IRR) report for NRAD.
Multidisciplinary confidential enquiry panels were convened to review the included cases and
complete the panel assessment tool (Appendix 6 – Panel assessment form). Members of the panels
reviewed:
• the reliability of the diagnosis of asthma
• whether asthma caused or contributed to the death
• whether any potentially preventable or avoidable factors of the deaths were evident in the records.
This included an analysis related to the asthma care both immediately preceding death and in
the past
• the overall clinical management, rated against:
i) the BTS/SIGN asthma guideline1
ii) the NRAD indicators of quality of care developed for this purpose (Table 3.1).
174 volunteer clinical assessors were recruited from primary, secondary and tertiary care throughout the
UK (Table 3.2) and each participated in one or more panels. Assessors were currently (or within 5 years
of being) in clinical practice in an NHS organisation, professional body or patient organisation and all
were clinical experts in asthma care. All were invited to attend a training session before their first panel
meeting; 89 assessors participated.
Expertise Number
Adult physicians (general, respiratory, allergy, intensive care and emergency medicine) 67
GPs 34
Pharmacists 2
Secondary care nurses (consultants, paediatric nurses, specialist adult and paediatric asthma and 24
respiratory nurses)
Clinical lecturers 1
Total 174
aPaediatric panels were composed mostly of paediatricians
Thirty-seven panel meetings were convened in various locations across the UK. On average, a panel
comprised 10 clinical assessors, with nine anonymised cases being presented and discussed per meeting.
Pre-panel preparation material was sent to assessors. On the day of the meeting, each case was presented
in detail by two clinical assessors, independent of each other. Issues were identified and discussed by the
entire panel prior to agreement on the cause of death and conclusions on care provided.
Data analysis
Quantitative
Statistical analysis was carried out using Stata version 12. Results are presented as percentages for binary
and categorical data. Continuous data are presented as medians and interquartile ranges (IQRs). Inter-
rater agreement was measured using Cohen’s kappa statistic.
Qualitative
276 cases were reviewed by the expert panels. The majority, 219 (79%), of these cases resulted in exactly
1,000 recommendations or comments where care could have been improved. Recommendations and
comments (free text) were transcribed verbatim from the panel assessment form into a spreadsheet prior
to coding and thematic analysis to generate themes (Fig 3.2).26–30 Additionally, examples of good
practice were identified, similarly analysed and reported (Appendix 10 – Summary of qualitative analysis
of free text recommendations and comments by panel assessors).
Thematic Generation
analysis – of eight key
identifying areas themes in which Observation that
of note within asthma provision comments and
comments and and healthcare recommendations Generation of
276 cases 219 with recommendations. practice should identified recommendations
reviewed recommendations Focus upon have been mainly focused and summary
improving better and four upon
asthma care, areas that instances of
and capturing illustrate good or poor practice
examples of acceptable
good practice practice
Approval was obtained from the National Information Governance Board (NIGB) under section 251 of
the NHS Act (2006) to collect patient-identifiable information without consent (approval reference: ECC
8-02(FT2)/2011). Approval to conduct family interviews was obtained from the National Research Ethics
Service committee (NRES) reference 1522/NOCI/2012; however, local research and development (R&D)
permission was also required and was only achieved from 66 (28%) of the 238 R&D departments
approached nationally.
All steering group members and assessors complied with RCP information and security policies, data
protection legislation and guidelines. All records were fully anonymised. Clinical assessors were allocated
cases from areas that were geographically remote from their base locations. All information relating to
the NRAD, including death data and panel conclusions, was logged onto the central NRAD database,
which has its own specific system-level security policy in place. Anonymised information from sources in
Northern Ireland was returned to and entered by the NRAD satellite team in Belfast to comply with local
data-protection regulations.
A cause for concern policy was developed and implemented to address cases (38/276, 14%) that
panellists unanimously agreed should be followed up with specific local action (Appendix 6 – Panel
assessment form).
During the study year, 900 of the 3,544 people in the UK with a mention of the word asthma on
their death certificates met the overarching inclusion criteria for the NRAD; these were screened
for consideration by the confidential enquiry panels. The details are shown in Table 4.1 and Fig 4.1.
Owing to the inclusion and exclusion criteria used for the NRAD, the cases selected do not represent
all of the asthma deaths in the study period. Therefore, the NRAD does not provide an accurate
figure for the total number of asthma deaths in the UK during the period of this review. The
process for deciding whether to include or exclude cases for the confidential enquiry is described in
Chapter 3.
Table 4.1 Number (%) of cases included in and excluded from the NRAD Confidential Enquiry
Included: Asthma coded as the underlying cause of death by ONS/NRS/NISRA 900 (25)
AND
<75 years with asthma in Part I or II of the MCCD
$75 years with asthma in Part I of the MCCD only
Excluded: $75 years with asthma in Part II of the MCCD and coded as the underlying 514 (15)
cause of death
Excluded: cases (all ages) with asthma in Part II of the MCCD and not coded as 2,130 (60)
the underlying cause of death
Total 3,544
Fig 4.1 NRAD consort diagram showing the numbers of cases with a mentiona of asthma on the Medical
Certificate of Cause of Death (MCCD), those meeting NRAD eligibility criteria and the medical case notes
returned
Number of deaths with ‘asthma’ anywhere on the death certificate (Part I or II)
N=3,544
aData from the Office for National Statistics (ONS) for England and Wales, the Northern Ireland Statistics and Research Agency
(NISRA) and the National Records of Scotland (NRS)
Table 4.2 Underlying cause of death in excluded cases where asthma was not coded as the underlying
cause of death (Stage 1, Fig 4.1)
(J00–J99) Diseases of the respiratory system (Table 4.3 details these cases) 184 (9)
(D00–D99) Diseases of the blood and blood-forming organs and certain disorders involving the 25 (1)
immune mechanism
(R00–R99) Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified 3 (0.1)
Table 4.3 Description of respiratory ICD-10U codes (ICD-10U codes J00–J99) in 184 excluded cases
where asthma was entered in Part II of the MCCD and not coded as the underlying cause of death in
Part I (Stage 1, Fig 4.1)
Paralysis of vocal cords and larynx (incl laryngoplegia, paralysis of glottis) J380 1 (1)
Other diseases of vocal cords (incl abscess, cellulitis, granuloma, J383 1 (1)
leukokeratosis, leukoplakia)
Other diseases of larynx (abscess, cellulitis, disease NOS, necrosis, J387 1 (1)
pachyderma, perichondritis, ulcer)
Tables 4.3.1 and 4.3.2 illustrate the overall variation in the type and quality of information included in
death certificates for those aged 75 years and over with asthma recorded in Part II of the MCCD and
coded as the underlying cause of death (Stage 2, Fig 4.1). These MCCD entries should reflect the cause of
death and the factors directly contributing to the deaths. The majority of entries in Part Ia of the MCCD
were for pneumonia or chest infections (401/514, 78%).
In Part II of 132 of these 514 certificates, only the single term ‘asthma’ was recorded, while the Part II
entries of the other 382 contained a composite list of medical conditions from which people had suffered
during their lifetimes, which may or may not have contributed to their deaths. Examples of these entries
are shown in Fig 4.3.2.
Table 4.3.1 Description of the medical disease terms entered in Parts I and II of the MCCD for 514
people over the age of 75 years and excluded from the NRAD process, where asthma was entered in
Part II of the MCCD and coded as the underlying cause of death (Stage 2, Fig 4.1)
Medical Certificate of Cause of Death (MCCD) entrya Part Ia Part Ib Part Ic Part II
GI, gastrointestinal
Older people often have multiple health conditions that may or may not contribute to their death;
many are entered on death certificates, therefore the ‘true’ underlying cause of death may not be
clear.25 For example, if the word ‘asthma’ appears anywhere on the death certificate, this may be
classified as the underlying cause of death, irrespective of where on the certificate the word was
entered; as a result, death certification and subsequent assignment of underlying cause of death vary
considerably.31–33 This results from the application of the complex rules of the WHO for classifying
diseases to determine the underlying cause of death. Table 4.3.2 shows some examples of the entries by
the doctors completing the MCCDs, where asthma was assigned as the underlying cause of death by
the authorities.
According to the complex rules of the WHO for classifying diseases, the underlying cause of death was
coded as asthma (ie ICD-10U J149).24
Table 4.3.2 Examples of MCCDs from the 382 of the 514 people aged 75 years and over who were
excluded from the NRAD process, where asthma was entered in Part II of the MCCD and coded as the
underlying cause of death but where other medical conditions were also entered in Part II
Most of the clinical records of the 755 cases returned by general practices and hospitals (Fig 4.1) were
screened for panel inclusion by a single clinician (NRAD clinical lead), with advice on some from an
expert group of retired asthma specialists. These experts reassessed a random sample of 50 selected
from these 755 cases by way of validation; there was good agreement at the screening phase, with a
high kappa score of 0.79. This is very encouraging in terms of the utility of the method to
include/exclude cases suitable for panel review (Appendix 12 – Inter-rater reliability report for
NRAD). Sufficient information was obtained for 276 deaths to allow detailed discussion at
confidential enquiry panel meetings (Fig 4.1 summarises the selection process and Chapter 6 details
the panel conclusions).
Clinicians failed to contribute any, or sufficient, information on 272 cases and so assessment for
inclusion could not be completed and these cases were excluded. This occurred despite repeated requests
for information, endorsement of the NRAD by all relevant royal colleges and guidance from the
General Medical Council (GMC) stating that UK-registered doctors have a duty to contribute to
confidential enquiries in order to help keep patients safe.34 While there may have been good reasons for
non-participation by health professionals, the clinicians treating 145 (16%) of the 900 cases failed to
provide any explanation at all for their non-participation (Fig 4.1).
The remainder of this report is restricted to deaths that were due to asthma. Death due to asthma was
defined as a death where the panel had concluded that asthma had definitely/probably/possibly
contributed to or caused death. Of the 276 deaths that went to panel, 195 (71%) were due to asthma.
Demographics
Characteristics of those who died from asthma (N=195) are shown in Table 4.4.1 and Table 5.3. Three-
quarters of the people reviewed by the panels and who died from asthma were over 40 years old.
Ethnicity data, available for 188 (96%) of those people who died from asthma, indicated that they
comprised 158 (84%) white individuals, nine (5%) of mixed race, 14 (7%) Asian and one (0.5%) black,
and six (3%) whose origin was not known.
Table 4.4.1 Demographic and personal characteristics of 195 people who, the panels concluded, died
from asthmaa
n (%)
If child aged <18 years Known to social services and documented in medical records 4 (14)
(N=28)
The person died before seeking medical assistance or before medical assistance was provided 87 (45)
aThese data were either provided by a combination of responses from the GP or by extraction from GP records by an experienced
respiratory clinician. Denominators for the percentages were 195 unless otherwise stated
Nearly half (41%) died at home, one-quarter (23%) on the way to hospital and one-third (30%) in
hospital.
Forty-five per cent (87/195) died from asthma without any medical assistance during the final episode;
for 65 of these cases, there was no record of them seeking medical assistance, and for 22 cases (11%),
there was a record of the patient trying to get help but dying before medical treatment could be
administered. In children, the panels found that 8/10 (80%) of those under 10 years, and 13/18 (72%) of
those aged 10–19 years, died before they reached hospital. It was not clear from the information
provided by the clinicians why the 65 cases did not call for assistance in time, or why care was not
provided for the 22 cases who did call for help. There was a record of 11 (17%) of the 65 and eight
(36%) of the 22 cases being provided with a PAAP.
Obesity and exposure to cigarette smoke are both known to increase the risk of people having asthma
attacks.35,36 Body mass index (BMI) data were available for 121 of the 195 and, of these, 30 (25%) were
overweight (BMI 25–29.9) and 38 (31%) were obese or very obese (BMI 30+). Thirty-nine of the 195
(20%) who died from asthma were recorded as active smokers (just below the average for the UK). Of
patients where active smoking status was not documented, 16 were known to be exposed to second-hand
smoke. No details were obtained on the proportion of these people who were offered smoking-cessation
advice.
Key finding: During the final attack of asthma, 87 (45%) people died without seeking medical
assistance or before emergency medical care could be provided.
Recommendation: All people with asthma should be provided with written guidance in the form of
a personal asthma action plan (PAAP) that details their own triggers and current treatment, and
specifies how to prevent relapse and when and how to seek help in an emergency.
Target audiences: Primary healthcare setting, secondary healthcare setting, patients and carers,
commissioners and professional and patient organisations.
Key finding: Fifty-five (28%) of the 195 people who died from asthma were current smokers (39) or
exposed to second-hand smoke (16).
Target audiences: NHS service managers, primary healthcare setting, secondary healthcare setting,
patients and carers and professional and patient organisations.
Fig 4.2 Geographical locations of where deaths occurred across the country
Responders vs non-responders
NRAD
Responder
Non-responding hospital
Non-responding GP
Three groups are displayed: (1) 403 responses from GPs and hospitals on the 276 cases that went to panel – blue stars, (2) 193 non-
responding GPs – black dots, (3) 59 non-responding hospitals – light blue diamonds. The non-responders highlighted are organisations
with case information outstanding at the end of the data submission period (31 August 2013); responses may have been received to
previous case requests. Owing to information governance regulations, Northern Ireland organisations cannot be portrayed on this map.
From Fig 4.2, these three groups of data appear fairly evenly distributed, suggesting that the NRAD
received a geographically representative sample of information on those cases considered eligible for the
panels.
Fig 4.3.1–4.3.4 show demographic data on the time of day, day of the week and month when the deaths
from asthma occurred; in Fig 4.3.2, the day of the week among asthma deaths was compared against all
those who were selected for the NRAD.
The number of asthma deaths was greatest in March, with 30 deaths. Deaths occurring in other
months ranged between 12 and 17 deaths per month. In the 28 children and young people,
4/10 (40%) aged under 10 years and 14/18 (78%) aged 10–19 years died between March and
September inclusive.
Panels were asked specifically whether they agreed with the official coding of asthma as the underlying
cause of death. Figure 4.3.5 shows that the proportion of cases where the panels agreed with this
decreased with the age of the case.
Fig 4.3.1 Time of day that death occurred (for 153 of 195 who died from asthma, where the time of death
was recorded)
90
80
70
Number of deaths
60
50
40
30
20
10
0
8am–6pm 6pm–12pm 12pm–8am
Time of day
Fig 4.3.2 Day of the week that death occurred (for 195 who died from asthma, and 890 of all 900 included
for the NRAD)
25
All cases included for NRAD
Panel cases (died from
20 asthma)
Percentage (%)
15
10
0
ay
ay
ay
ay
ay
da
da
sd
nd
sd
id
rd
on
es
Fr
tu
ur
ne
Su
Tu
M
Sa
Th
ed
W
Fig 4.3.3 Month that death occurred (for 195 who died from asthma)
35
30
25
Number of deaths
20
15
NRAD FIG 4.3.2
10
0
ry
ril
ay
r
ch
ne
ly
st
y
be
be
be
be
ar
Ju
gu
Ap
ua
ar
Ju
nu
to
m
em
m
Au
M
br
ce
ve
Oc
Ja
pt
Fe
No
De
Se
Month
Age group
(years)
<10
10–19
20–44
45–64
65–74
75+
aDate of birth was missing in two cases, so for these cases age could not be calculated
Fig 4.3.5 Percentage of cases by age group where the panel agreeda that the clinical findings matched
the coding of asthma as the underlying cause of death by the Office for National Statistics (ONS) for
England and Wales, the Northern Ireland Statistics and Research Agency (NISRA) or the National
Records of Scotland (NRS) (N=259)
100 Ò
Ò
Ò
Ò
80
Percentage (%)
60 Ò
Ò
40
<10 10–19 20–44 45–64 65–74 75+
Age group (years)
aCases where the panel selected that they definitely/probably/possibly agreed that ONS/NISRA/NRS matched the clinical findings.
Excluded cases were those where this question was deemed not applicable by the panel (N=3), where there was insufficient
information to decide (N=13) or where information was missing (N=1)
Practice details were returned for 138 (71%) of the 195 patients who died from asthma. Denominators
vary according to where data were missing.
Practice details
Practices had a median of four doctors (IQR 3–5, N=131), and cared for a median 9,500 patients (IQR
6,250–12,000, N=134). Thirteen (10%) of 131 practices had only one full-time doctor, and nine of these
also employed between one and six part-time doctors.
Thirty-eight (28%) of 135 practices had a doctor with a special interest in respiratory diseases. One
hundred (81%) of 124 practices were known to have employed at least one nurse with an asthma
diploma. Fifty-seven (41%) of 138 practices provided student teaching and GP postgraduate training,
and 15 (11%) of these were research practices.
GPs who perform asthma reviews can claim payment for their work under the UK Quality and
Outcomes Framework (QOF). QOF is a voluntary annual reward and incentive programme for all GP
practices. QOF scores were recorded by the GPs for 89/138 (64%) of the 195 people who died from
asthma; full points (ie 45 points) were attained by 74 (83%) of the 89 practices.37,38
Good asthma care includes regular clinical review. This should be a structured review at least annually,
but more frequently in people with poor asthma control or at high risk of severe attacks. A review should
include an assessment of asthma control, identification of risk factors, a check of inhaler technique,
optimisation of treatment and provision or update of an agreed PAAP for patients.1,2
Asthma reviews were performed by GPs in 78 (57%) of 136 practices, by GPs with an interest in
respiratory diseases in three (2%), by nurses with an asthma diploma in 82 (60%) and by ‘general’
practice nurses in 62 (46%), with multiple options possible (Appendix 2 – Form A1, section 6). Practices
were asked to list their usual procedures when doing an asthma review to qualify for claiming QOF
payments, and these are shown in Table 5.1.
Table 5.1 Processes and assessments undertaken in 135 general practices during an asthma reviewa
n (%)
Practice staff issue a personal asthma action plan (PAAP) (if not done before) 85 (63)
Methods used for assessing asthma RCP three questions1 63/77 (82)
control in the practices (N=77) Asthma Control Test (ACT)1 5/77 (6)
Another control tool 9/77 (12)
aThree practices did not respond to any of these questions and were therefore excluded
Of the 195 patients who died from asthma, 135 (69%) had their last asthma review in primary care
recorded, of which 132 (98%) were face to face, two were by telephone and one was not known. The
median time to death since the last asthma review in primary care was 121 days (IQR 30–306 days).
Among the 135 cases where the last asthma review was recorded in primary care, only 37 of these
(27%) had an assessment of asthma control, 57 (42%) an assessment of medication use, 96 (71%) an
assessment of inhaler technique and only 33 (24%) had been provided with a PAAP. In 111 (57%) of
the 195 cases, there was evidence that a routine asthma review was performed in the last year before
death.
Forty-two patients (22%) missed a routine asthma appointment in the year before they died. Practices
attempted to follow up 23 (55%) of these; in 19 (45%), there was no record of contact being made to
encourage attendance. There was no information available on the provision or timing of appointments
offered for patients (Table 5.2).
There is strong research evidence of the effectiveness of PAAPs. In only 44 (23%) of the 195 patients
who died was there a record of them having been provided with a PAAP in either primary or secondary
care.
For 65 of the 195 patients who died (33%), there was no record of them seeking medical assistance
during the final attack; 11 (17%) of these had been provided with a PAAP. A further 22 patients
sought medical assistance but died before treatment could be administered, of whom eight (36%)
had been provided with a PAAP. This suggests a need for improved advice for patients on the
recognition and emergency self-management of asthma attacks. Wider use of PAAPs has the potential
to prevent death from asthma by increasing the number of people who take appropriate action and
seek help.
Table 5.2 Details of current management of 195 patients who died from asthma
n (%)
Who cared for this patient’s Primary care only: GP only 49 (25)
asthma in the 12 months Primary care only: nurse (with no GP input in the 2 years 4 (2)
before death? (N=195) before death)
Primary care only: GP and nurse 43 (22)
Secondary care only 19 (10)
Primary and secondary care 64 (33)
No one recorded 16 (8)
Asthma review in primary care Patient was reviewed (N=195) 135 (69)
Evidence of routine primary care review in the last year 111 (57)
(N=195)
Time to death since last review in days, median (IQR) 121 (30–306)
(N=128)
Inhaler technique
Asthma sufferers who are unable to use their inhaler correctly are at increased risk of poor asthma
control, potentially resulting in an attack.39–41 Inhaler technique was recorded as good in 65 (68%) of the
96 cases checked in primary care.
Key finding: Among the 135 cases where the last asthma review was recorded in primary care, only
37 of these (27%) had an assessment of asthma control, 57 (42%) an assessment of medication use
and 96 (71%) an assessment of inhaler technique, and only 33 (24%) had been provided with a
personal asthma action plan (PAAP). In 111 (57%) of the 195 cases, there was evidence that a
routine asthma review was performed in the last year before death.
Target audiences: NHS service managers, primary healthcare settings, commissioners and policy-
makers.
Eighty-three (43%) of the 195 patients had a record of receiving specialist secondary care, but only 28
(34%) of these had been reviewed in specialist secondary care in the 12 months prior to death: the
median time since the last asthma review was 62 days (IQR 26–96 days). Inhaler technique was known to
have been checked in seven (8%) of these 83 patients.
Twenty-eight (14%) of the 195 deaths were in children and young people under the age of 20 years.
Sixteen of these (57%) had been receiving specialist secondary care.
Key finding: Of the 195 patients who died, 60 (31%) had no record of an asthma review in primary
care in the previous 12 months.
Key finding: Of the 83 patients who died and were under specialist supervision, 54 (65%) had no
record of an asthma review in secondary care in the previous 12 months.
Recommendation: People with asthma should have a structured review by a healthcare professional
with specialist training in asthma, at least annually. People at high risk of severe asthma attacks
should be monitored more closely, ensuring that their personal asthma actions plans (PAAPs) are
reviewed and updated at each review (National Standards set for the four UK nations).1,2,43–47
Target audiences: Primary healthcare setting, secondary healthcare setting and commissioners.
Key finding: Of the 195 patients who died from asthma, 112 (57%) were not recorded as being
under specialist secondary care supervision.
Recommendation: Patients with asthma must be referred to a specialist asthma service if they have
required more than two courses of systemic corticosteroids, oral or injected, in the previous
12 months or require management using British Thoracic Society (BTS) stepwise treatment 4 or 5 to
achieve control.1
Target audiences: Primary healthcare setting, secondary healthcare setting and commissioners.
Summary information was obtained from data submitted by clinicians or extracted from copies of
clinical records by the NRAD clinicians (Appendices 2–5 – Forms A1, A2 and B1, B2).
Age at death ranged from 4 to 97 years. Those who died had suffered from asthma for between 1 and
62 years (median 11 years, IQR 5–20 years).
Age at diagnosis was available for 102 patients. Asthma was first diagnosed between the ages of
10 months and 90 years, with the median age at diagnosis being 37 years (IQR 9–61 years).
Seventy patients (69%) were diagnosed after the age of 15 years, suggesting that most were diagnosed
in adulthood and had late-onset asthma.
This may be a new and important finding because most asthma is considered to start in childhood.2
Key finding: Median age at diagnosis for the 102 patients in whom it was known was 37 years
(IQR 9–61 years); 70 (69%) were diagnosed after the age of 15 years. This implies that most were
diagnosed in adulthood (late-onset asthma).
Diagnosis
According to UK national standards, there should be a record of the rationale for diagnosing asthma in
the medical notes.43–47 One hundred (51%) of the 195 patients who died were diagnosed on the basis of
recurrent symptoms, 34 (17%) on physiological measurement of lung function, and 66 (34%) on the
response to asthma medication. The basis for diagnosing asthma was not detailed in 64 (33%).
Asthma triggers
In any individual with asthma, triggers are generally consistent and often predictable. Exacerbating
factors or triggers for asthma should be elicited and documented so that measures can be taken to reduce
their impact. Exacerbating factors or triggers were recorded in only 95/188 (51%). Respiratory tract
infections were the most common triggers of attacks, followed by hay fever and other allergic factors. No
trigger was documented in 93/188 (49%) of those who died (Table 5.3).
Severity and control of asthma are often misunderstood or confused. Severity is assessed by the amount
of medication required to control the disease, whereas control is related to the presence of asthma-
related symptoms.1,2,48
One of the best predictors of future asthma attacks is the level of symptom control.1,2 In this review, the
NRAD requested information about the method used to determine asthma control, but evidence on the
level of control in each case was not available. The NRAD defined severe asthma as present in those
patients receiving treatment at BTS steps 4 and 5 and/or the additional criteria of hospital admissions
and asthma attacks recorded in the previous year (Table 5.3, and Appendices 2 and 4 – Form A1 and B1,
item 4.2).
Of the 155 patients for whom severity could be estimated, 61 (39%) had asthma that was classified as
severe.1 Fourteen (9%) were treated as mild cases (BTS step 1) and 76 (49%) as moderate cases (BTS
steps 2 and 3). It is likely that many cases that were treated as mild or moderate (BTS steps 1–3) had
poorly controlled, undertreated asthma rather than truly mild or moderate disease. In the remaining
four patients, the first attack was the final attack and therefore a severity was not assigned.
Key finding: In patients who died from asthma, exacerbating factors or triggers were recorded in
only 95/195 (49%). Documented triggers included respiratory tract infections, allergy and drugs.
Recommendation: Factors that trigger or exacerbate asthma must be elicited routinely and
documented in the medical records and personal asthma action plans (PAAPs) of all people with
asthma, so that measures can be taken to reduce their impact.
Previous hospitalisation
Ninety patients (47%) of the 190 for whom information was available had, at some time in the past,
been admitted to hospital owing to asthma; 27/181 (15%) had been admitted to an intensive care unit
(ICU). Forty patients (34%) of 117 had attended an emergency department (23 of them on two or more
occasions) in the previous year because of asthma. There may have been more emergency department
attendances, because data were missing in a further 78 cases.
Nineteen (10%) of the 195 patients died within 28 days of being treated in hospital for an asthma attack.
Table 5.3 Overall asthma and allergy characteristics of 195 patients who died from asthma
n (%)
aAirflow obstruction was tested by peak expiratory flow (PEF) or spirometry; clinicians completed a tick box stating how asthma was
diagnosed (Appendices 2 and 4 – forms A1 and B1)
bSeverity was defined as follows: BTS/SIGN treatment steps 1 and 2 were used as surrogate for mild and moderate severity; those who
were prescribed four asthma medications and those who had been admitted to hospital in the past year, needed oral corticosteroids
daily or had two or more prescriptions for systemic corticosteroids in the past year were classified as severe
NSAIDs, non-steroidal anti-inflammatory drugs (eg ibuprofen and naproxen); URTI, upper respiratory tract infection
In general practice, repeat-prescribing systems enable patients to request and collect an agreed number
of medications for a specified period of time without the need for consultation. These are recorded on
GP records, but it is left to patients to order and collect prescriptions themselves. Practices usually invite
patients to attend for an asthma review when they have requested the maximum number of approved
prescriptions or have passed the date set for review of medication.
The medication prescription data for the past 12 months in those dying from asthma are shown in
Table 5.4 and Fig 5.1–5.3.
Short-acting beta agonist (SABA) bronchodilators (Fig 5.1 and Table 5.4)
Well-controlled asthma is associated with little or no need for short-acting bronchodilator (SABA or
reliever) inhalers, so the need for excess SABA inhalers is a signal that asthma is poorly controlled.
National guidelines state that those regularly using SABA inhalers more than three times a week should
be prescribed regular corticosteroid (preventer or inhaled corticosteroid) inhalers.
From information on 194 of the 195 people who died, 189 (97%) were prescribed SABAs at the time of
death. The number of SABA inhalers issued was recorded in 165; only three did not have any SABA
prescription in the year before death. For these 165 patients, the number of prescribed inhalers ranged
from 0 to 112, with a median of 10 (IQR 2–21), per year. Ninety-two (56%) of the 165 were prescribed
Fig 5.1 Frequencies of SABA prescriptions issued for patients in the 12 months before death from
asthma (data available for 165 patients)
24
22
20
18
16
Number of patients
14
12
10
0
0 10 20 30 40 50 60 70 80 90 100 110 120
Number of prescriptions of SABA
Table 5.4 Current medication of 195 patients who died from asthma
Drug n (%)
ICS, inhaled corticosteroids; LABA, long-acting beta agonist; SABA, short-acting beta agonist
more than six and 65 (39%) more than 12 SABA inhalers in the year before they died. Six patients (4%)
had been prescribed more than 50 SABA inhalers in the previous year.
Those prescribed multiple SABA (reliever) inhalers were likely to have poorly controlled asthma.
Further details of the 27 LABA inhalers as a single component are given in Table 5.4.1.
Yes Yes No 12
Yes No Yes 5
Yes No No 2
Inhaled corticosteroid (ICS or preventer) inhalers are the cornerstone of management of people with
asthma with persistent symptoms and those at risk of attacks. Good control is usually achieved with the
regular use of preventer medication.1 However, previous research has consistently reported that many
people take less ICS than recommended by their clinician (‘non-adherence’), and this has been associated
with poor outcomes, including death.49,50 ICS medication is currently available either as inhalers
containing ICS alone (‘stand-alone’ ICS inhalers) or in combination with a long-acting beta agonist
(LABA) bronchodilator as ‘combination’ inhalers. Co-administration of ICS and LABA can also be
achieved by using two separate single drug inhalers.
Patients prescribed any ICS preventer medication (Fig 5.2 and Table 5.4)
From available information, 168 (86%) of the 195 patients were prescribed preventer inhalers containing
inhaled corticosteroids, either as ‘stand-alone’ ICS and/or as combination inhalers, at the time of death.
Depending on the dose of preventer medication and the inhalers prescribed, in order to adhere to advice
on daily medication use, patients would normally need at least 12 preventer inhalers (‘stand-alone’ ICS
or combination devices) per year. For 128 of the 168 patients, the numbers of prescribed preventer
inhalers in the year before they died are known. These 128 patients were issued between one and 54
inhalers (median 5, IQR 2–10) in the previous year. Forty-nine (38%) of the 128 had been issued with
fewer than four inhalers and 103 (80%) had been issued with fewer than 12 in the previous year.
Patients prescribed ICS as a single component (Fig 5.2 and Table 5.4)
From available information on 192 patients, 79 (41%) were recorded as having ‘stand-alone’ ICS inhalers
prescribed at the time of death. Of these, the number of prescriptions issued in the previous year was
known for 63 patients, for whom between zero and 23 prescriptions were issued (median 3, IQR 1–7).
Thirty-five (56%) of the 63 patients were prescribed fewer than four inhalers, and 55 (87%) were
prescribed fewer than 12 inhalers.
Since most ICS inhalers last for 1 month at standard doses, the majority of patients taking ICS inhalers
were probably undertreated (Fig 5.2).
Fig 5.2 Frequencies of ICS prescriptions issued for cases in the 12 months before death from asthma
(data available for 63 patients)
15
14
13
12
11
10
Number of patients
6
5
4
3
2
1
0
0 2 4 6 8 10 12 14 16 18 20 22 24 26
Number of prescriptions of ICS
Patients prescribed ICS/LABA in combination inhalers (Table 5.4 and Fig 5.3)
From available information on 191 patients, 111 (58%) were recorded as having combination ICS/LABA
inhalers prescribed at the time of death. The number of prescriptions issued was known in 88 who had
been prescribed between zero and 52 inhalers (median 5, IQR 2–8) in the previous year. Thirty-two
(36%) of the 88 patients had been prescribed fewer than four inhalers and 70 (80%) had been prescribed
fewer than 12 in the previous year.
Since most ICS/LABA inhalers last for 1 month at standard doses, the majority of patients prescribed
combination inhalers were probably undertreated (Fig 5.3).
Twenty-seven patients were prescribed long-acting beta agonist (LABA) bronchodilators as a single
device. Of these patients, two were not prescribed ICS inhalers (as a single device or in combination) at
the time of death. Twenty-five patients were prescribed ICS inhalers; however, three of these patients
were known to have stopped collecting their prescriptions. This means that at least five of the 195 (3%)
patients who died from asthma were on LABA monotherapy without ICS preventer treatment, putting
them at greater risk of a severe asthma attack.
Fig 5.3 Frequencies of ICS/LABA prescriptions issued for patients in the 12 months before death from
asthma (data available for 88 patients)
18
17
16
15
14
13
12
Number of patients
11
10
9
8
7
6
5
4
3
2
1
0
0 5 10 15 20 25 30 35 40 45 50 55 60
Number of prescriptions of ICS/LABA
Key finding: There is evidence of overuse of or over-reliance on SABA (reliever) inhalers. From
prescribing data on 165 patients, 92 (56%) were prescribed more than six and 65 (39%) more than
12 SABA inhalers in the year before they died. Six patients (4%) had been prescribed more than 50
SABA inhalers in the previous year.
Recommendation: All asthma patients who have been prescribed more than 12 short-acting reliever
inhalers in the previous 12 months should be invited for urgent review of their asthma control, with
the aim of improving their asthma through education and change of treatment if required.
Target audiences: Pharmacists, primary healthcare setting, secondary healthcare setting, patients and
carers, policy-makers, commissioners and professional and patient organisations.
Target audiences: NHS service managers, pharmacists, primary healthcare setting and
commissioners.
LABA monotherapy
There have been major concerns over the prescription of LABA inhalers without ICS (ie LABA
monotherapy), a treatment that has been associated in controlled trials with increased mortality and is
without a licence or guideline endorsement.51–53 LABAs can be provided either as part of a single
ICS/LABA combination inhaler, which ensures that LABA therapy cannot be prescribed as monotherapy
without ICS, or as a LABA inhaler, which allows the possibility of differential adherence to ICS and
LABA components. Of those who died from asthma, 27 were prescribed LABA as a single-component
inhaler device. The panels reported that, in eight cases, LABA therapy without concomitant ICS was a
factor in the asthma death. However, on closer scrutiny, only five (Table 6.4.2) were actually on LABA
monotherapy (ie without ICS); two of the others were prescribed combined ICS/LABA and the third had
not been prescribed either.
Key finding: There was evidence of widespread underuse of preventer medication. Overall
compliance with preventer inhaled corticosteroid (ICS) was poor, with low repeat prescription fill
rates both for patients treated with ICS alone and for those treated with ICS in combination with a
long-acting beta agonist (LABA).
Target audiences: Pharmacists, primary healthcare setting and secondary healthcare setting.
Key finding: At least five (3%) patients who died were on LABA monotherapy without inhaled
corticosteroid preventer treatment.
Recommendation: The use of combination inhalers should be encouraged. Where long-acting beta
agonist (LABA) bronchodilators are prescribed for people with asthma, they should be prescribed
with an inhaled corticosteroid in a single combination inhaler.
Target audiences: NHS service managers, pharmacists, primary healthcare setting and secondary
healthcare setting.
Of the 900 cases that met the NRAD entry criteria, 276 were considered in detail by the confidential enquiry
panels; the panels concluded that 195 (71%) people died from asthma (Table 6.1). The other 81 people did
not have asthma, had asthma but did not die from it, or there were insufficient data to make a decision.
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 from asthma 4 (1)
aPanels considered that 171/195 (88%) patients definitely, probably or possibly died from asthma and that asthma definitely,
probably or possibly contributed significantly to 24/195 (12%) deaths (Appendix 6 – Panel assessment form)
Forty-two (22%) of the 195 cases judged by the panels to have died from asthma were considered by
their own clinicians to have chronic obstructive pulmonary disease (COPD) as well as asthma. COPD
has overlapping features with asthma but is treated differently and, during the NRAD review process, it
became clear that some asthma deaths might have been miscoded as COPD. In discussion with
respiratory experts, a new Read code was requested to facilitate a computerised record of ‘chronic asthma
with fixed airflow obstruction’. This new code (H335) was created in June 2013 and is available for
recording in UK primary care computerised records.
Key finding: In 27 (10%) of the 276 cases where the Medical Certificate of Cause of Death (MCCD)
identified asthma as the cause of death, expert multidisciplinary panels concluded that the patients
did not have asthma.
Recommendation: There is a need for improved guidance for doctors completing Medical
Certificates of Cause of Death (MCCDs).
Target audiences: NHS service managers, primary healthcare setting, secondary healthcare setting and
policy-makers.
The expert multidisciplinary panels were asked to judge the quality of care provided against the
standards set by the NRAD (Table 3.1) and the BTS/SIGN asthma guideline.1 Quality of care was
categorised into adequate or inadequate, with adequate defined as the level of care that the panel
assessors would accept for themselves or a family member.
The panels concluded that the overall standard of asthma care was inadequate, with several aspects of
care well below the expected standard, for 51 (26%) of those who died. The overall standard of care for
children and young people was inadequate (with several aspects of care well below the expected
standard) in 13/28 (46%).
Table 6.2 Expert multidisciplinary panel conclusions on the quality of care for patients who died from asthma
Key finding: Several aspects of asthma care fell well below expected standards for 51 (26%) of those
who died and the management of the fatal asthma attack was inadequate for 49 (25%) of them.
Recommendation: A national ongoing audit of asthma should be established, which would help
clinicians, commissioners and patient organisations to work together to improve asthma care.
Target audiences: Healthcare departments of England, Northern Ireland, Scotland and Wales.
Asthma guidelines
Panels identified potentially avoidable factors in the year before death in 89 (46%) of the 195 deaths,
where alternative management could reasonably be expected to have affected outcome. These included
apparent lack of specific asthma expertise by attending clinicians in 34 (17%) and lack of
implementation of the BTS/SIGN asthma guideline in 48 (25%) cases.
Key finding: There were potentially avoidable factors related to the implementation of national
guidelines in 89 (46%) of the 195 deaths.
Target audiences: NHS service managers, primary healthcare setting, policy-makers and
commissioners.
The panels identified 130 (67%) cases of the 195 who died from asthma that had at least one major
potential avoidable factor. The major factors that were selected most frequently are listed in Table 6.2.1.
b7 Clinician did not refer to another appropriate team member when this 16
seemed to have been indicated
In 126 (65%) of the 195 deaths, panels identified potentially avoidable factors that may have been
influenced by patients, their families or the environment during the 12 months before death (Table
6.3.1). Apparently poor adherence to medical advice was identified in 94 (48%) cases. Sixty-six (34%)
did not seem to be taking appropriate medication despite this being prescribed, and 43 (22%) failed to
attend for asthma reviews. Thirty-seven (19%) of those who died were smokers and 12 (6%) were
exposed to second-hand smoke.
Table 6.3.1 Avoidable factors related to the patient or family and their environment
In children and young people, there were potentially avoidable factors related to patients, their families
or the environment in nine (90%) of those under 10 years and in 17 (94%) of those between 10 and
19 years. Seven of 18 (39%) young people between the ages of 10 and 19 years were exposed to
second-hand smoke and seven (39%) had allergies.
Of the 28 children and young people, four (40%) of those aged under 10 years and 14 (78%) of those
aged 10–19 years died between March and September, which supports previous research findings that
children and young people are more likely to die during the summer months than the rest of the
year.22
Key finding: In children and young people, apparent lack of adherence to medical advice was
common. Seven (39%) of those aged 10–19 years were exposed to second-hand smoke. Allergy,
especially seasonal allergy, was evident in patients under 20 years.
Recommendation: 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.
Target audiences: NHS service managers, pharmacists, primary healthcare setting, secondary
healthcare setting and patients and carers.
Target audiences: NHS service managers, primary healthcare setting, secondary healthcare setting
and policy-makers.
Key finding: There were potentially avoidable factors related to patients and their families in
126 of 195 (65%) deaths, including inadequate information, education and advice on managing
asthma.
Target audiences: Pharmacists, primary healthcare setting, secondary healthcare setting, patients and
carers, and professional and patient organisations.
Good routine medical care of asthma includes optimisation of treatment, usually by prescribing
preventer medication in those with poor control, checking inhaler technique and provision of a PAAP.
There were potentially avoidable factors related to routine care, supervision and monitoring in primary
care in 137 (70%) patients and in 24/83 (29%) of those managed in secondary/tertiary care in the year
before death.
44
10:08
Table 6.3.2 Potentially avoidable factors identified by panels in routine medical care and ongoing supervision and monitoring in primary and
secondary care in the 12 months before death
Page 44
Patients (%) with potentially avoidable factor(s) All ages All ages Under 10 years Under 10 years 10–19 years 10–19 years
during routine medical care and ongoing Primary care Secondary careb Primary care Secondary careb Primary care Secondary careb
supervision and monitoring in primary and (N=195) (N=83) (N=10) (N=7) (N=18) (N=9)
secondary care n (%) n (%) n (%) n (%) n (%) n (%)
One or more avoidable factor 137 (70) 24 (29) 8 (80) 4 (57) 16 (89) 4 (44)
Lack of adherence to guidelinesa 115 (59) 19 (23) 7 (70) 4 (57) 14 (78) 3 (33)
Did not review the patient according to guidelines 61 (31) 7 (8) 5 (50) 1 (14) 2 (11) 0 (0)
Did not identify potential triggers for asthma, 24 (12) 6 (7) 0 (0) 1 (14) 6 (33) 2 (22)
eg allergies and NSAIDs
Did not perform adequate asthma review 81 (42) 10 (12) 4 (40) 2 (29) 10 (56) 3 (33)
Did not give personal asthma action plan 89 (46) 12 (14) 5 (50) 3 (43) 11 (61) 2 (22)
aMore than one item could be selected
bAmong patients whose care was managed by secondary/tertiary care
Key finding: The panels identified potentially avoidable factors related to routine asthma care,
ongoing supervision and monitoring in 137/195 (70%) cases in primary and 24/83 (29%) cases in
secondary care in the year before death from asthma.
Recommendation: Health professionals must be aware of the features that increase the risk of
asthma attacks and death, including the significance of concurrent psychological and mental health
issues.
Target audiences: Primary healthcare setting, secondary healthcare setting, commissioners and
professional and patient organisations.
Target audiences: Pharmacists, primary healthcare setting and secondary healthcare setting.
Target audiences: NHS service managers, primary healthcare setting, secondary healthcare setting
and commissioners.
Target audiences: Pharmacists, primary healthcare setting and secondary healthcare setting.
For the majority of deaths, care had been provided by a professional appropriate for the patient’s
presenting complaint. In both primary and secondary care, the panels identified avoidable factors related
to referral to a specialist in 38 (19%) patients, including delays or failure of referral for specialist opinion.
In particular, primary care health professionals did not refer 32 of these patients to secondary care
colleagues when this seemed clinically indicated.
The panels identified potentially avoidable factors related to supervision or delegation of care in 29
(15%) of those who died (Appendix 6 – Panel assessment form, section B12, page 28), including
inappropriate delegation of care in seven (4%).
The panels identified avoidable factors related to assessment and recognition of risk status by
professionals in primary care in 99/195 (51%) cases, and in 23/83 (28%) of those seen in secondary care.
46
10:08
Table 6.3.3 Potentially avoidable factors identified by the panels on the assessment of patients and recognition of their risk status in primary and
Page 46
secondary care
Patients (%) with avoidable factor(s) All ages All ages Under 10 years Under 10 years 10–19 years 10–19 years
related to the assessment and Primary care Secondary careb Primary care Secondary careb Primary care Secondary careb
recognition of risk status in primary (N=195) (N=83) (N=10) (N=7) (N=18) (N=9)
and secondary care (more than one n (%) n (%) n (%) n (%) n (%) n (%)
could be selected by the panels)
One or more avoidable factor 99 (51) 23 (28) 7 (70) 2 (29) 15 (83) 3 (33)
Incorrect diagnosis 12 (6) 3 (4) 0 (0) 0 (0) 0 (0) 0 (0)
Delay in recognition of risk statusa 49 (25) 10 (12) 5 (50) 0 (0) 9 (50) 2 (22)
Delay in assessment or evaluation of patient 15 (8) 2 (2) 2 (20) 0 (0) 3 (17) 0 (0)
Delay in recognising abnormal clinical signs 7 (4) 3 (4) 1 (10) 0 (0) 2 (11) 1 (11)
Delay in recognising the problem or its severity 29 (15) 4 (5) 2 (20) 0 (0) 5 (28) 0 (0)
Delay in diagnosing or recognising high-risk status 25 (13) 5 (6) 3 (30) 0 (0) 6 (33) 1 (11)
Other delay 3 (2) 1 (1) 0 (0) 0 (0) 0 (0) 0 (0)
These included delays in recognising risk status in 49/195 (25%) cases in primary care and 10/83 (12%)
cases in secondary care, and inadequate assessment in 80/195 (41%) cases in primary care and 16/83
(19%) cases in secondary care.
Of the 195 people who died from asthma, 65 (33%) died without seeking medical assistance and a
further 22 (11%) called for help but died before they saw a healthcare professional (Table 4.4.1).
Sufficient information was available for analysis on 38 patients whose final attack was assessed and
treated in primary care and 59 whose final attack was treated in secondary care.
For the 38 (19%) patients treated in primary care during their final, fatal asthma attack, there were
potentially avoidable factors in 13 (34%) of these deaths related to assessment of the attack and access to
care by professionals in primary care. For the 59 patients who were treated for their final attack in
secondary care, there were potentially avoidable factors related to assessment of the attack and access to
care by professionals in 20 (34%).
Deficiencies in the quality of the assessment were found in 12 (32%) patients in primary care and 14
(24%) in secondary care. Failures to perform physiological measures of lung function occurred in eight
(21%) cases in primary care and five (8%) cases in secondary care.
Table 6.3.4 Potentially avoidable factors during assessment of final attack and access to care in primary
and secondary care
Patients (%) with avoidable factor(s) relating All ages All ages Under 10 years 10–19 years
to assessment of final attack and access to Primary care Secondary Secondary Secondary
care in primary and secondary care (more than (N=38) care (N=59) care (N=2) care (N=5)
one could be selected by the panels) n (%) n (%) n (%) n (%)
aMore than one item could be selected. No avoidable factors for patients aged under 20 years were identified for primary care
In an acute asthma attack, treatment with reliever bronchodilators and corticosteroids should be
administered as soon as possible. Administration of reliever bronchodilator therapy is recognised as
an essential and potentially life-saving treatment in acute severe asthma. In the 49 people recorded as
being treated with bronchodilator reliever therapy, timing was only noted in 25 (51%); in these 25
cases, emergency reliever treatment was not given to eight (32%) within 30 minutes of being seen by
a doctor.
The panels identified avoidable factors related to the management of the final attack by professionals in
12 (32%) of those cases treated in primary care and 20 (34%) treated in secondary care.
Key finding: Twelve of 38 patients who had their fatal attack treated in primary care had
avoidable factors related to referral by a professional in primary care to a specialist in secondary
care.
Key finding: Twenty of 59 patients who died in hospital had an avoidable factor related to referral by
a professional in secondary care to a specialist.
Recommendation: Every NHS hospital and general practice should have a designated, named clinical
lead for asthma services, responsible for formal training in the management of acute asthma.
Target audiences: NHS service managers, primary healthcare setting, secondary healthcare setting,
policy-makers and commissioners.
Nineteen (10%) of those who died did so within 28 days of being treated in hospital for an asthma
attack. In 13 (68%) of these patients, the panels identified potentially avoidable factors in relation to
both their discharge into the community and follow-up arrangements. At least 40 (21%) of those who
died had attended an emergency department with an asthma attack in the previous year and, of these,
23 had attended on at least two occasions.
Table 6.3.5 Potentially avoidable factors related to management or treatment of final attack in primary and secondary care (38 attacks treated in
primary care; 59 attacks treated in secondary care)
Patients (%) with avoidable factor(s) relating All ages All ages Under 10 years Under 10 years 10–19 years 10–19 years
to management of final attack in primary and Primary care Secondary care Primary care Secondary care Primary care Secondary care
secondary care (more than one could be (N=38) (N=59) (N=1) (N=2) (N=1) (N=5)
One or more avoidable factors 12 (32) 20 (34) 0 (0) 1 (50) 1 (100) 2 (40)
49
Chapter 6 – Confidential enquiry panel conclusions
NRAD Ch6 22/4/14 10:08 Page 50
Key finding: Nineteen (10%) of those who died did so within 28 days of being treated in hospital for
an asthma attack. In 13 (68%) of these, there were potentially avoidable factors in relation to both
their discharge into the community and follow-up arrangements.
Recommendation: The use of patient-held ‘rescue’ medications including oral corticosteroid and
self-administered adrenaline (in people prone to anaphylaxis), as part of a written self-management
plan, should be considered for all patients who have had a life-threatening asthma attack or a near-
fatal episode.
Target audiences: Pharmacists, primary healthcare setting, secondary healthcare setting, patients and
carers, commissioners, and professional and patient organisations.
Key finding: At least 40 (21%) of those who died had attended an emergency department with an
asthma attack in the previous year and, of these, 23 had attended on at least two occasions.
Target audiences: NHS service managers, primary healthcare setting, secondary healthcare setting
and commissioners.
Local reviews
Following the unexpected death of a patient, a structured local review or critical event analysis (CEA) by
health professionals can provide an opportunity for reflection and learning. In children, Child Death
Overview Panel (CDOP) processes should be followed.54 Health professionals were asked to submit
copies of any local reviews on their patients selected for the NRAD, but copies of such reports were
received for only 24 (12%) of the 195 people who died from asthma. These included 12 of the 28 (43%)
children and young people and 12 of 118 (10%) of those aged 20–74 years. No information on any
reviews was provided for any patient aged over 74 years. The confidential enquiry panels concluded that
nine of 24 (38%) reviews were of adequate quality for learning as a reflection on practice or the care
provided for these people.
Key finding: Information on local reviews was received on only 24 (12%) of the 195 people who died
from asthma.
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.55
Target audiences: NHS service managers, pharmacists, primary healthcare setting, secondary
healthcare setting, policy-makers, commissioners and professional and patient organisations.
Family interviews
Within the NRAD methodological design, it was envisaged that contact with bereaved family members
regarding their experiences and thoughts concerning aspects of the deceased’s asthma care would be
informative and enlightening. To achieve this, a limited number of telephone interviews were planned
with bereaved family members from across the UK. Recorded semi-structured telephone interviews were
to be conducted by a registered nurse (Appendix 8 – Bereaved family member interview form).
Significant methodological issues were subsequently encountered, including delays in securing
appropriate approval from local ethics committees and unforeseen practical difficulties contacting family
practitioners and families. As a result, insufficient numbers of interviews were conducted to obtain
meaningful, generalisable information. The methodological challenges in this approach will be explored
in a subsequent publication.
A number of studies on asthma deaths have reported an increase in seasonal summer death rates in
those aged under 45 years. However, in the summer of 2012, the NRAD did not find any clusters or
peaks in asthma deaths either during the grass pollen season in May and June or during the fungal spore
season in July–September. However, environmental factors are thought to be responsible for the
previously reported clusters of deaths in summer. Therefore, weather, pollen and pollution data were
obtained from the Met Office (the UK’s national weather service) for the date and location of each death,
the six preceding days and the corresponding date 1 year previously for comparison. Mean counts per
cubic metre of air were provided for fungal spore data for Leicestershire and Derby by the Institute for
Lung Health, University of Leicester, for all days in January–November 2011 and March–November 2012.
Data were obtained from just one site in the Midlands because fungal spore data are not available for
different regions of the UK. Although it is not known exactly how counts from different geographical
regions compare, literature suggests a lag phase for fungal spores and so it was assumed that levels from
a single central site should be representative.
Data on fungal spore and grass pollen levels were thus available for both 2011 and 2012, but data on
the number of asthma deaths were only available for 2012. This proved to be a major limitation and
hampered the ability to correlate fungal spore counts and asthma deaths owing to a lack of data on
asthma deaths in 2011. Therefore, it was not possible to compare death rates between two seasons
with different seasonal aero-allergen levels. In 2012, Alternaria and Cladosporium counts were
considerably lower than in 2011 (Fig 7.1), whilst for some other spores the counts were generally
higher in 2012 than in 2011 (notably Sporobolomyces, Tilletiopsis, Didymella, Leptosphaeria, Botrytis,
ascospores, hyaline basidiospores and total fungal spores). Levels of grass pollen were comparable
between the two seasons. Therefore, NRAD data on deaths in 2012 remain consistent with the
hypothesis that Alternaria and Cladosporium (both known allergenic seasonal fungal spores) are
responsible for the summer peak in asthma deaths seen in some years (but not in 2012) and reported
by previous studies. However, in the absence of data on asthma deaths in 2011, no conclusions on
causality can be drawn. A more detailed analysis of the data will be undertaken in a separate
publication.
Alternaria Cladosporium
250 Year 7,000 Year
2011 2011
2012 6,000 2012
Median Cladosporium
200
Median Alternaria
5,000
150 4,000
100 3,000
2,000
50
1,000
0 0
ril
Oc er
ch
ril
ay
ch
ay
ne
A ly
pt ust
ve r
ne
A ly
pt ust
Oc er
r
ve r
be
be
No be
No be
Ju
Ju
Ap
Ap
b
b
ar
ar
M
M
Ju
Ju
Se ug
Se ug
em
m
to
em
m
to
M
M
Month Month
For each month, the median of the daily For each month, the median of the daily
counts is shown counts is shown
Coloured basidiospores
Hyaline basidiospores
Source: aMet Office; bDr Catherine Pashley, Institute for Lung Health, University of Leicester
For the temperature variables (mean, minimum, maximum), there was a consistent, statistically
significant difference between years 2011 and 2012, with 2012 colder by nearly a degree on average. For
relative humidity, any differences were less apparent and no UK-wide data could be found. Air-quality
data were only available from mid-June 2011 to mid-July 2012 and thus provided little opportunity to
compare between years 2011 and 2012.
Fig 7.2 Distribution of deaths across the seasons for the NRAD cases
Died from asthma
asthma/no asthma
Did not die from
Insufficient information
This report highlights some common factors that contributed to people dying from asthma. However,
there are many things that you can do to reduce the risk of having a potentially fatal asthma attack. In
fact, of the asthma deaths examined in this report, 65% had major factors that could have been avoided.
This section highlights the key findings from the report, and suggests some ways that you can reduce
your, or your child’s, risk of having a serious asthma attack.
Key evidence: At least 50% of people who died were being treated for mild or moderate asthma.
Asthma does not kill only people who have severe asthma. This report highlights, from available data, that
58% of people who died were being treated for either mild or moderate asthma. So it is really important
to understand that asthma does kill, even if you think that you only have mild asthma. There are many
factors that can increase your risk of having an asthma attack. One quick thing that you can do is take the
Triple A: Avoid Asthma Attacks online test. It asks you a few questions, such as how many times you take
your inhalers, and then it gives you a result to show whether you may be at an increased risk of having an
asthma attack. The most important thing about the test is that it gives you some great advice about how
you can reduce your risk of a future attack. Take the test at www.asthma.org.uk/triple-a.
You can also take the Asthma Control Test, which looks at how well your asthma is being controlled.
You can download the test at www.asthmacontroltest.com. Talk to your GP or asthma nurse about the
results of this test at your next appointment.
Key advice: Using a written personal asthma action plan and attending your annual asthma review
are vital.
Key evidence: Only 23% of people who died had a personal asthma action plan. Twenty-two per cent
of people who died missed a review appointment with their GP in the year before they died. Forty-
five per cent died before seeking medical assistance, or before medical assistance was provided during
the attack that caused their death.
If you have asthma, you are entitled to have a review with your asthma nurse or GP at least once a year.
A review is your chance to tell your GP or asthma nurse how your asthma is affecting you. You can then
agree a plan of action together to reduce your risk and get on top of your asthma.
At the review, you should ask for your own written personal asthma action plan to be completed. This is
a written plan that is personal to you and lets you know how to spot when your symptoms are getting
worse, what to do when your symptoms get worse, what to do in an emergency and when to call for
medical help. We know that many people leave it too late to call for help when their asthma is really
troubling them. Using a personal asthma action plan can help you to avoid these emergencies. You can
download an asthma action plan from www.asthma.org.uk/adultactionplan and you can take it to your
GP or asthma nurse to ask them to discuss and complete your personal plan with you. You can also
download an asthma action plan for your child at www.asthma.org.uk/childactionplan.
Key advice: You should have an appointment with your GP within 48 hours after you leave hospital
if you have been admitted or had to visit accident and emergency because of your asthma.
Key evidence: Forty-seven per cent (90/190) of people who died had been admitted to hospital at
some point because of their asthma.
Key evidence: At least 21% (40/195) of people who died had attended accident and emergency with
asthma in the year before the asthma attack that caused their death.
Key evidence: Ten per cent of people who died had been treated in hospital within the 28 days
immediately before having the asthma attack that caused their death.
We know that being admitted to hospital for asthma, as well as having to go to accident and
emergency because of an asthma attack, may be a sign that you are more likely to have another
asthma attack in the future that may cause death. It is a good idea to see your GP within 48 hours of
being sent home from hospital or after you are allowed to leave accident and emergency. You can have
your medicines reviewed, your asthma action plan updated and your inhaler technique checked at this
follow-up appointment. Going to accident and emergency or ending up in hospital is a warning sign
that you could be in danger of having a more serious asthma attack in the future. It is very important
to see your GP as soon as possible to make sure that you are doing all you can to avoid another
asthma attack.
Key advice: Make sure you take your medicines as advised by your GP or asthma nurse.
Key evidence: Among patients who were prescribed short-acting relievers, 39% (65/165) were
prescribed more inhalers in the year before death than they should be using.
It is really important to take your medicines as advised by your GP or asthma nurse. If you do not
understand what your medicines do or if you have any worries about the types of medicine that you
take, or how to use your inhalers, then talk this over with your GP or asthma nurse. Your GP and asthma
nurse are there to help you get the best out of your medicines. Some people may be wary of potential
side effects, but for most people the side effects of their asthma medicines are small, if they have any at
all. Steroids (in inhalers called preventer inhalers) are often prescribed to prevent asthma getting out of
control. These drugs are excellent at helping you to keep on top of your asthma, so it is worth following
your GP’s advice about what medicines to take, and when to take them. If you are not sure how to use
your inhaler properly, ask your GP, asthma nurse or pharmacist to show you. You can also take a look at
the videos at www.asthma.org.uk/inhalerdemos to check whether you are taking your inhalers in the best
way to keep you well.
It is also worth keeping an eye on how many times you are using your reliever inhaler (usually blue). If
you are using your reliever inhaler three or more times per week, this may be a sign that your asthma is
not as well controlled as it could be. If you are using your blue inhaler this often, you should make an
appointment to have your asthma reviewed with your GP or asthma nurse.
Key evidence: At least 49% of people who died never had their triggers recorded in their medical
notes and so may never have been told how to avoid them.
Asthma ‘triggers’ are the things that set off your asthma symptoms. They can be anything from pets to
pollen. Talking about how you could avoid your triggers can be done when you see your GP or asthma
nurse for your next asthma review. It is worth having a think about what triggers make your asthma
worse, and whether you could take steps to avoid them. If you have an allergy, it is also worth talking
about allergy management. Having an allergy can make your asthma symptoms worse quickly, so staying
on top of your allergies could help you to avoid an asthma attack.
We know from the report that some people who died also lived with psychological conditions, such as
depression and anxiety. Living with these types of condition can be stressful, and stress can be a trigger
for many people with asthma. Living with depression and anxiety may also make it more difficult to be
motivated to keep taking your asthma medicines. Your GP or asthma nurse can help you talk over any of
these issues.
Key advice: Smoking and being overweight can have a very serious impact on your asthma.
Key evidence: Fifty-six per cent of people who died were overweight. Thirty-one per cent of people
who died were obese or very obese. Twenty-eight per cent of people who died were smokers or were
exposed to second-hand smoke from other people.
While many people know that smoking and being overweight can lead to many serious health problems,
some people may not be aware how smoking and being overweight can affect their asthma. Smoke
irritates your lungs and can bring on your asthma symptoms. Smoke can also stop your asthma
medicines working properly. Stopping smoking can be difficult, but it could be one of the most
important things that you do to improve your asthma. Talking to your GP about ways to stop smoking
could be the first step to a better life with asthma.
Having a higher BMI (body mass index – a measure to show whether you are overweight) could also
make it more difficult to manage your asthma. Talking to your GP about your diet and the best way to
lose weight could form part of your annual review and could have a great impact on your asthma.
For more advice about how you can reduce your risk of an asthma attack and stay on top of your
asthma, take a look at the information on www.asthma.org.uk or you can call the Asthma UK Helpline
to speak to an asthma nurse specialist on 0800 121 62 44.
These key findings and recommendations were developed by the Primary Care Respiratory Society UK
for inclusion in the report.
1 For 43% of patients, there was no evidence that the Practices should have proactive methods of
patient had had an asthma review in general identifying and contacting patients who fail to
practice in the last year before death. attend for routine asthma appointments. A range of
Twenty-two per cent had missed a routine GP methods of engagement should be explored (eg
asthma appointment in the previous 12 months. telephone consultations – by clinicians not support
staff, telephone follow-up if patients do not attend,
personalised letters explaining possible risks of not
attending, alerts on prescription screen limiting
inhaler issue in future, opportunistic review of
patients attending for other conditions, major alert
on screen for all to see lack of asthma review).
2 Avoidable factors relating to the adequacy of Reviews should be conducted by clinicians trained in
asthma reviews were identified in 42% of cases – in asthma care and aware of the factors that place
areas such as the provision of written self- patients at higher risk of exacerbation and death.
management plans, and checking medication Practices should devise/acquire a standard template
adherence and inhaler technique. to raise the quality of the regular review, until a
standard national template is available. QOF
guidance states that an asthma review should
include:
5 The quality of routine care was assessed as The training needs of clinicians responsible for
inadequate in 62% of cases, and the panels managing people with asthma need to be assessed
concluded that there may have been a lack of and monitored to ensure that the clinicians are
specific asthma expertise in 17%. competent for the task.
Potentially avoidable factors identified by panels: Each primary care practice should have a named
in 59% of deaths, clinicians in primary care failed to health professional responsible for the maintenance
adhere to the BTS/SIGN asthma guideline and improvement of standards of asthma care in the
(including 42% not performing adequate review practice and these professionals should engage in
and 46% not giving a PAAP (key finding 3)). additional training and updating in respect of this
role.
6 Avoidable factors relating to assessment and Practices need to adopt a system of establishing the
recognition of risk by primary care professionals risk profile of a patient and put a treatment plan in
were identified by the panels in 51% of cases. place that is appropriate to their risk profile.
7 Avoidable factors were identified by the panels in Practice staff and clinicians in primary care need to
the management of the final attack by primary care have systems in place and the appropriate expertise
professionals in 32% of those who accessed to recognise serious asthma attacks, and initiate
medical treatment during their final attack. This immediate treatment.
included delays in initiating appropriate treatment, As half of deaths are taking place during surgery
and failure to give appropriate treatment. hours, it is even more important that practices have
Fifty per cent (77/153) of the deaths took place such systems in place. Reception staff need to be
between 8am and 6pm. trained to recognise when an individual with asthma
needs to be seen urgently.
8 Avoidable factors relating to prescribing were Practice systems should be put in place – in every
identified by the panels in 47% of the cases consultation with a person with asthma – to identify
managed in primary care. patients using one SABA inhaler a month or more
Among patients that were on short-acting relievers and to offer advice proactively on how to improve
at the time of death, 39% had been prescribed asthma control. Practices should receive and record
more than 12 salbutamol inhalers in the previous notification from pharmacies of SABA inhalers
year and six individuals had had more than 50. supplied without a prescription under patient group
Overuse of short-acting bronchodilators is a key directions.
indicator of poor asthma control and of higher risk Continuing use of single-agent LABA inhalers should
of exacerbation and death. be avoided so as to avoid the risk of non-use of
At least five patients had been on LABAs with no inhaled corticosteroids in patients with persistent or
concomitant inhaled steroids, which the Medicines severe symptoms.
and Healthcare Products Regulatory Agency Concordance with inhaled steroids and combination
(MHRA) has explicitly warned against on grounds of ICS/LABAs needs to be monitored closely to ensure
safety. that adequate medication is being taken.
Many patients on ICS alone or in combination were
undertreated owing to an inadequate number of
prescriptions issued in the last year. Eighty per cent
were issued fewer than 12 prescriptions a year and
38% (of 128) had fewer than four prescriptions.
9 Poor treatment adherence, psychosocial/learning This reinforces the need for better patient education,
disability problems and a BMI of 25 or more were and the importance of assessing risk in the course of
identified in 48% (94/195), 44% (84/190) and routine asthma care.
56% (68/121), respectively, of those who died. For
26% of patients, psychosocial factors were
considered a risk factor.
10 Ten per cent of the deaths occurred in patients who Practices should press for prompt communication
had received hospital treatment within the previous from hospitals and other urgent care providers about
28 days. patients seen with asthma exacerbations, and
At least 21% had been seen for asthma in accident should ensure primary care follow-up within
and emergency departments in the previous two working days of receiving such notification, so
12 months. as to allow optimisation of treatment and to identify
those patients whose asthma remains out of control
despite their hospital attendance.
11 Of the 900 cases selected for data collection for the Doctors should regard it as a professional obligation
study, 272 were not included because clinicians to cooperate with confidential enquiries of this kind,
involved in their care provided either no or and to supply the information requested.
inadequate information to enable the panels to
make a decision about the quality of their care.
12 Reports based on critical event analysis were There is a strong case for any death thought to be
submitted for only 12% of the people who died primarily due to asthma to be the subject of a local
from asthma – 43% of the children and teenagers, confidential enquiry process or critical event analysis
10% of those aged 20–74 years, and none aged to ensure that lessons are learned to reduce the
over 75 years. Only 38% of these were deemed by likelihood of future asthma deaths. Practices should
the panels to be of sufficient quality for reflective ensure that any asthma death is systematically
learning. investigated locally.
13 The study has revealed significant issues in the Doctors may need better training in death
accuracy of death certification and in the practices certification, and standards of diagnosis, in
of the Office for National Statistics (ONS) for particular between asthma and COPD, are in need of
England and Wales, the Northern Ireland Statistics improvement.
and Research Agency (NISRA) or the National
Records of Scotland (NRS) in assigning asthma as
an underlying cause of death.
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Term Definition
Allergen Something external to the person that causes an allergic reaction, such as
asthma, eczema, hay fever or anaphylaxis
Alternaria A fungal genus in the phylum Ascomycota. Alternaria species are major plant
pathogens and are also common allergens in humans. They are commonly found
in outdoor air, and occasionally indoors. They can cause hay fever or
hypersensitivity reactions that sometimes lead to asthma
Anaphylaxis A serious allergic reaction that is rapid in onset and may cause death
Aspergillus, Penicillium Two closely related fungal genera which produce asexual spores that are
morphologically similar. There are more than 150 species within each genus,
found in various climates worldwide. These are well-known human allergens and
some species are opportunistic pathogens
Auscultation (of the chest) The process of listening, usually with a stethoscope, to sounds produced by
movement of gas or liquid within the body, as an aid to diagnosis
Binary data Data whose unit can take on only two possible states, traditionally termed 0 and
+1 in accordance with the binary numeral system and Boolean algebra
Botrytis A fungal genus in the phylum Ascomycota. Botrytis is a plant pathogen that
affects many plant species, although most notably wine grapes. Botrytis spores
are known human allergens
Term Definition
Brittle asthma A type of asthma distinguishable from other forms by recurrent, severe attacks
that are often difficult to predict and manage
BTS/SIGN guideline National asthma guideline produced to aid the management and treatment of
asthma. Joint development by the British Thoracic Society and the Scottish
Intercollegiate Guidelines Network
Case–control study A type of observational study in which two existing groups differing in outcome
are identified and compared on the basis of some supposed causal attribute
Categorical data Data which can be represented by numbers that can be grouped together to
represent similar findings
Cause for concern A case for which the panel assessors have concerns that the pattern of practice fell
below a standard, which indicates that the practitioner or team is likely to put
future patients at risk, if not addressed
Clinician Any healthcare professional who holds a recordable professional registration with
a healthcare professional regulatory body and has undertaken a period of study
post-18 years to achieve that qualification, usually within a university setting
Cohen’s kappa statistic A statistical measure of inter-rater agreement or inter-annotator agreement for
qualitative (categorical) items
Coloured basidiospore A spore produced by sexual reproduction, characteristic to fungi in the phylum
Basidiomycota. A collective name for sexual spores from the Basidiomycota that
appear coloured under the microscope, and which are not identified to genus level
Confidential enquiry Details of each death or incident within a specified area, eg asthma, are critically
reviewed by a team of experts to establish whether clinical standards were met
(similar to the audit process) and also that the right clinical decisions were made
in the circumstances. The purpose of a confidential enquiry is to detect areas of
deficiency in clinical practice and devise recommendations to resolve them
DELPHI A research method that involves a panel of experts who answer questionnaires in
two or more rounds, after which the facilitator provides an anonymous summary
of the experts’ forecasts from the previous round, as well as the reasons for their
judgements. The rounds continue until the group moves towards the ‘correct’
answer and the process is finished after a predefined stop criterion is met, eg the
production of 10 clear recommendations or statements
DH Department of Health
DHSSPS The Department of Health, Social Services and Public Safety, Northern Ireland
Didymella A fungal genus in the phylum Ascomycota. Didymella is a plant pathogen and
suspected to be a human allergen
Term Definition
Eosinophilia A condition in which the eosinophil count in the peripheral blood exceeds
0.45×109/l (450/µl)
Epicoccum A fungal genus in the phylum Ascomycota. The genus Epicoccum contains a single
species, Epicoccum nigrum. It is a mould widely distributed and commonly
isolated from air, soil and foodstuff. It is a known human allergen
Epidemiological study A study of how often diseases occur in different groups of people and why.
Epidemiological information is used to plan and evaluate strategies to prevent
illness and as a guide to the management of patients in whom disease has
already developed
Ganoderma A genus of polypore mushrooms that grow on wood; includes about 80 species,
many from tropical regions
Genera Plural of ‘genus’, which is a taxonomic rank used in the biological classification of
living and fossil organisms
GI problem Gastrointestinal problem (which can involve the oesophagus, stomach, small and
large intestines, colon)
Hyaline basidiospore A spore produced by sexual reproduction, characteristic to fungi in the phylum
Basidiomycota. A collective name for sexual spores from the Basidiomycota that
are colourless under the microscope, and are not identified to genus level.
Airborne levels increase during wet weather
ICD-10 A medical classification list created by the WHO that codes for diseases, signs and
symptoms, abnormal findings, complaints, social circumstances, and external
causes of injury or diseases. It is used to code cause of death
ICD-10U ONS/NRS use information from both Parts I and II of the death certificate to
assign the underlying cause of death code (ICD-10U). The condition thought to
be the most likely cause of death is assigned the ICD-10U code
Term Definition
Interquartile range (IQR) A measure of statistical dispersion, being equal to the difference between the
upper and lower quartiles;1,2 IQR=Q3–Q1
Inter-rater reliability (IRR) The degree of agreement among raters. It gives a score of how much
homogeneity, or consensus, there is in the ratings given by judges
Late-onset asthma Asthma that is diagnosed after the age of 15 years. This is the standard
definition, but often people think that this is asthma diagnosed after 40 years of
age
Lung function test A test to measure how well your lungs work
Mann–Whitney test Used when it is believed that it is important to compare two or more things, but
the populations identified are not necessarily similar
Normal distribution Data that have, within their range, 95% (sometimes 97.1%) of the data within two
standard deviations of the mean; the distribution is symmetrical around the mean
Oxygen saturation A relative measure of the amount of oxygen that is dissolved or carried in a given
medium
PaCO2 Partial pressure of carbon dioxide in the blood. Critical in regulating breathing
levels and maintaining body pH
Parametric data Data that are either missing key information, skewed, or we suspect that the
findings are not distributed around a normal distribution; data that are not
symmetrical about the mean and where we suspect that there are significant
outliers (values far away from the median and mean)
Term Definition
PEF Peak expiratory flow, also called peak expiratory flow rate (PEFR); a person’s
maximum speed of expiration, as measured with a peak flow meter
Primary care Typically, this provider acts as the principal point of consultation within the
healthcare system and coordinates other specialists that the patient may need.
Examples of these professionals are GP, family physician, nurse practitioner,
pharmacist and registered nurse
Pulse oximetry A non-invasive method for monitoring a patient’s peripheral oxygen saturation
levels
Qualitative research Studies in natural settings and attempts to make sense of and interpret
phenomena in terms of the meanings that people bring to them
Quantitative research This is mainly focused upon quantities, usually numbers, which will be the main
type of data that these methods collect. The results will be analysed using
mathematical and statistical methods
RCP three questions Royal College of Physicians three questions relating to the control of asthma.
1 Have you had difficulty sleeping in the last week because of your asthma
(including cough)?
2 Have you had your usual asthma symptoms during the day (cough, wheeze,
chest tightness or breathlessness)?
3 Has your asthma interfered with your usual activities (housework/school etc)
in the last week?
Read code A coded thesaurus of clinical terms that are applied in a patient’s notes to help to
identify the range of their current clinical conditions and aid in the management
of these
Respiratory rate The number of breaths (inhalation–exhalation cycles) taken within a set amount
of time (typically 60 seconds)
Term Definition
Reversible airflow Airflow through the lungs is reduced (obstructed), but this can be improved when
obstruction inhaled medication (usually a short-acting bronchodilator) is given, often to such
an extent that there appears to be no evidence of the previous reduction. The
reduction in airflow is often measured using spirometry or peak expiratory flow rate
Secondary care Healthcare services provided by medical specialists and other health professionals
who generally do not have first contact with patients
Section 251 (NHS Act The approval process that organisations must complete if they wish to collect
(2006)) patient information
Serum potassium The concentration of potassium measured within one part of the blood called
serum. There is a set range of normal values of this for adults and children
Spirometry A measure of lung function, specifically the amount (volume) and/or speed (flow)
of air that can be inhaled and exhaled
SpO2 Peripheral oxygen saturation, measured indirectly (often by pulse oximetry). This
is a term referring to the amount of oxygen as a percentage combined with
haemoglobin within the blood
Standard deviation A measure of how far away from the mean the population is dispersed. A small
standard deviation means that the population is closely placed around the mean;
large standard deviations mean that the data population is widely dispersed
around the mean
System-level security policy A policy put in place by the organisation collecting patient information to ensure
its security and protection
Thematic analysis A qualitative analytical method generally described as a method for identifying,
analysing and reporting patterns (themes) within data. It organises and describes
in rich detail and interprets various aspects of the research topic
Ustilago A fungal genus in the phylum Basidiomycota. These plant pathogens are referred
to as smut fungi. Smuts are cereal and crop pathogens that most notably affect
members of the grass family. Ustilago spores are known human allergens
Variable airflow Airflow through the lungs is reduced at times, but this can be improved when
obstruction inhaled medication (usually a short-acting bronchodilator) is given, often to such
an extent that there appears to be no evidence of the previous reduction, but the
variability needs addressing and this often requires additional medication to be
used