Académique Documents
Professionnel Documents
Culture Documents
for improving
iron deficiency
anaemia care
in England
2016
Dr Khailee Cheah, Consultant Geriatrician, Royal Free Hospital; Dr Jamie Dalrymple, General Practitioner,
Drayton Medical Practice; Dr Andrew Goddard, Consultant Gastroenterologist, Royal Derby Hospital;
Keith Hanks, British Kidney Patient Association; Dr Duncan Jenkins, Specialist in Pharmaceutical Public Health
at Dudley Office of Public Health; Professor Phil Kalra, Consultant Nephrologist, Salford Royal Hospital;
Rod Mitchell, Crohns in Children Research Association; Joanna Pearce, Crohns and Colitis UK;
Michael Sobanja, NHS Alliance; Dr Wayne Thomas, Consultant Haematologist, Derriford Hospital;
Edwina Towning, Kidney Research UK; Iain Wittwer, Specialist Nurse Practitioner, Churchill Hospitals,
Oxford and Anaemia Nurse Specialist Association
The Anaemia Manifesto is fully sponsored by Vifor Pharma Ltd. Vifor have been involved in the initiation of the Manifesto,
its content, publication and in the selection of the authors.
Summary
1. Define overarching best practice principles Achieve consensus on key principles for diagnosis and
management of iron deficiency anaemia (IDA) in England
2. Tailor services locally Review local practice and identify areas for improvement
3. Develop the evidence base Conduct long-term IDA treatment trials focused on major
mortality and morbidity endpoints
4. Educate HCPs and patients Develop e-learning packages for healthcare professionals
(in primary and secondary care) who manage patients with
or at risk of IDA
Proposals on who should be responsible for each Manifesto item are provided within
NOTE: Although this Manifesto provides action items for IDA care in England, many of the recommendations
could be adapted for the other nations of the UK.
2SUMMARY
Introduction
Anaemia occurs when red blood cell (RBC) production is decreased, RBC destruction is accelerated, or RBCs
are lost due to bleeding.1 The most common type of anaemia is IDA, with a prevalence of 25% in adult men
and post-menopausal women.2 There are three predominant causes of IDA:13
Inflammation as seen in anaemia of chronic disease (e.g. chronic kidney disease [CKD], inflammatory
bowel disease [IBD]; chronic heart failure [CHF]); and
The occurrence of IDA is often related to one of a variety of other diagnoses, and hence IDA management
may reside with GPs or with a range of different specialties.
IDA can have a substantial impact on patients health, sleep and functioning.47 As a result, it may significantly
reduce quality of life (QOL).4 The treatment of IDA has been shown to improve patients QOL in randomised
controlled trials across several conditions (e.g. IBD, CHF and heavy menstrual bleeding).810 Treatment also
improves symptomatic measures, such as exercise capacity.11 Despite this, IDA is under-diagnosed and under-
treated in England.12,13 There are many possible reasons for this, including insufficient surveillance of at-risk
groups by healthcare professionals (HCPs), lack of understanding of the potentially severe consequences of
not treating IDA, lack of responsibility for IDA by one specialty, inadequate referral and follow-up pathways,
and insufficient use of appropriate therapies.
The impact of under-diagnosis and under-treatment is felt not just by patients but also at system level.
Recent Hospital Episode Statistics (HES) data showed that the total cost of IDA management in England was
65.6 million in 2014/15 equivalent to 310,900 per CCG. With appropriate interventions in primary and
secondary care, many IDA patients can be kept out of hospital.15 However, emergency admissions for IDA are
rising, and there are now more than 17,000 such admissions every year in England, with an associated cost of
28.4 million.14 To put that into context, there are more emergency admissions for IDA than for hypertension,
and almost half the number that there are for diabetes complications (primary diagnosis).16 On average, each
emergency IDA admission is estimated to cost 1,165 more than a day case admission (1,640 vs 475,
respectively).14
Overall, IDA management and outcomes are suboptimal in England, and significant numbers of patients are
affected. Something can and must be done. This Manifesto describes key priorities with five areas for action.
We believe that the changes discussed can be implemented in a cost-effective manner, with much of the
outlay for service improvement offset by reductions in emergency care costs.
INTRODUCTION 3
1. Define Overarching Best Practice Principles
Current situation
There are several clinical guidelines available for the diagnosis and management of IDA. However, because
IDA is typically secondary to other conditions, most are specific to the primary diagnosis for example,
the British Society of Gastroenterology (BSG) guidelines, intended primarily for gastroenterologists;2 the
Kidney Disease: Improving Global Outcomes (KDIGO) guidelines, for HCPs managing patients with CKD;17
the British Society of Paediatric Gastroenterology, Hepatology and Nutrition guidelines, intended for HCPs
managing children;18 the British Committee for Standards in Haematology guidelines for the management
of IDA in pregnancy;19 the NICE guidelines for blood transfusion;20 the National Comprehensive Cancer
Network guidelines for HCPs managing cancer or chemotherapy-induced anaemia;21 and the European
Society of Cardiology guidelines for HCPs managing acute and chronic heart failure.22 In addition, there are
local guidelines intended for specific regions, such as the Manchester Anaemia Guide.23 However, while
there is a Clinical Knowledge Summary for IDA,24 NICE have not provided any national, cross-specialty
guidelines for this disorder (although anaemia management is discussed in guidance documents for some
other conditions, such as CKD).25
Furthermore, the available guidelines are often not followed. For example, although the BSG guidelines
recommend that all patients with IDA should receive iron replacement,2 the recent UK IBD Audit found
that only 44% of patients admitted to hospital with IDA secondary to ulcerative colitis actually received
treatment.26
Following guidelines is important not just in ensuring that IDA is treated, but also that it is diagnosed
in the first place. IDA can easily be missed, particularly in primary care, and clinical surveillance among
HCPs in England is failing to adequately detect it.12 There is evidence to show that the introduction and
implementation of clear IDA guidelines could increase the number of patients evaluated and improve the
detection of underlying causes.27
Ensure specific practice guidelines for IDA are Lobbying of NHS England by patient
developed by NICE associations and medical specialty societies*
Both HCPs and patients can play a key role
in advocating for this development
*Such as the British Society of Gastroenterology, Primary Care Society for Gastroenterology, Renal Association, British Renal Society, British
Society for Haematology, British Cardiovascular Society, British Geriatrics Society, Royal College of General Practitioners, Anaemia Nurse
Specialist Association, etc. Including, but not limited to, the British Kidney Patient Association, Kidney Research UK, Crohns and Colitis UK,
and Crohns in Children Research Association
Current situation
IDA care in England is highly heterogenous, for several reasons:
1. Many sufferers remain undiagnosed,12 or may not be appropriately referred from primary to specialist
care following an initial diagnosis (e.g. because the GP is unsure who to refer to, or due to variations
in IDA treatment across local services).13
2. There is a lack of consensus on the cut-off levels for anaemia (haemoglobin) and iron deficiency
(various markers) that determine whether a patient should receive further investigation and treatment.2
3. IDA can be secondary to a variety of primary diagnoses that may influence its treatment.2,17,18,21,22
4. Management may be led by a GP or by one of number of different specialties, each of which may
follow their own diagnosis and treatment guidelines.2,17,18,21,22
Finally, from a logistical perspective, care pathways currently differ widely from area to area, and even
from practice to practice, depending on the experience and knowledge of GPs and service delivery in
secondary care.
This service heterogeneity, allied to a lack of awareness among HCPs, can result in a failure to take
responsibility for long-term care in IDA.
Review local practice and identify areas for improvement Clinical commissioning groups (CCGs)
A summit meeting of local stakeholders (HCPs in primary and clinical leads in relevant disease areas
and secondary care, patient groups, commissioners, etc)
may be necessary to achieve this
Identify a local IDA champion within every acute care hospital Hospital clinical leads, in consultation
This HCP will drive necessary change and coordinate with CCGs
local IDA care
Develop clearly understandable local care pathways for CCGs and appropriate specialists, with
IDA covering both primary and secondary care, including guidance from the local IDA champion
referral criteria from primary care (where required) see
case study below
All IDA patients should be covered, including those not
managed by the specialties that most commonly see IDA
patients, such as gastroenterology and nephrology*
Current situation
Much high-quality research has been performed in recent years to understand the causes of IDA23 and
its impact on health, functioning and QOL.47 Furthermore, treatments such as iron and erythropoietin
have been extensively studied and shown to improve anaemia, exercise capacity and QOL.2,811,17,28
However, a number of important epidemiological, clinical and health economic questions remain
unanswered. For example:
Epidemiological: What is the incidence and prevalence of IDA in England (diagnosed and undiagnosed)?
Clinical: What effect does correcting IDA have on hard endpoints, such as cardiovascular events
and mortality?
Health economic: What are the direct and indirect costs of IDA to the economy and can these be
reduced through improvements in care (e.g. by reducing emergency admissions, improving workplace
productivity, etc)? How cost effectively can these improvements be made?
In addition, many other key research questions remain unanswered, such as those laid out by NICE for
anaemia management in CKD.25
Conduct long-term IDA treatment trials as a priority, focused National Institute for Health Research;
on major mortality and morbidity endpoints, as well as local- researchers; drug manufacturers
level studies assessing the real world impact of IDA and its
treatment
Current situation
Levels of knowledge about IDA vary significantly amongst HCPs, particularly in primary care (where HCPs
have to manage a particularly broad range of conditions). As a result, clinical surveillance may fail to detect
IDA, and some people may remain undiagnosed.12 Furthermore, many patients with IDA are under-treated:
fewer than half of patients in a recent IBD audit had received therapy.26
This may reflect uncertainty and lack of knowledge among HCPs about a wide variety of factors, including:
the need for IDA surveillance in at-risk groups and in those with signs and symptoms of IDA (e.g. fatigue);
the potentially severe physical and psychological consequences of inaction on IDA; diagnostic thresholds
for defining anaemia and iron deficiency; appropriate investigations required to identify underlying causes;
who should take responsibility for IDA patients and referral pathways into specialist care; appropriate
treatment; and long-term monitoring and follow-up.
Improved knowledge among HCPs is also essential if they are to support patients to understand IDA and
its management. Many patients currently lack sufficient understanding to perform adequate self-care or to
drive the medical management of their condition.
Develop e-learning packages for physicians Medical and nursing schools; Health Education
and nurses (in primary and secondary care) England;
who manage patients with or at risk of IDA* local education providers (with expertise provided by
Key topics may include: recognising patients medical specialty societies)
at risk for IDA; referral criteria and pathways;
diagnosis and key investigations; treatment
and follow-up guidelines
Create multi-format patient education materials Patient associations (including expert patients)
to empower people with or at risk of IDA to:
Ask the right IDA-related questions of
their HCPs;
Understand their own condition,
e.g. a know your bloods campaign
*Some high-quality educational materials already exist that could be used for this purpose (e.g. the Anaemia Nurse Specialist Associations
Anaemia Academy). Including, but not limited to, the British Kidney Patient Association, Kidney Research UK, Crohns and Colitis UK, and
Crohns in Children Research Association.
Current situation
As described in points 14 of this Manifesto, there are many areas for improvement in the care of IDA in
England. We have proposed a range of necessary actions. It is essential that the impact of these actions
can be defined and measured, and hence appropriate metrics are needed.
Quality standards for the care of IDA are suggested in the BSG guidelines:2
1. All patients with IDA should be screened for coeliac disease.
2. All patients (other than menstruating women) with IDA and no obvious cause should have appropriate
endoscopy or radiological imaging.
3. All patients should receive appropriate iron replacement.
4. All those not responding to treatment should be considered for further investigation.
5. In all patients being investigated for IDA, reasonable evidence of IDA should be documented in the
patient record based on appropriate markers.
Similarly, the NICE guidelines on managing anaemia in CKD provides a number of implementation priorities
relating to diagnosis, assessment, treatment and monitoring such as regular testing to diagnose iron
deficiency and determine potential responsiveness to iron therapy.25
However, there are several problems with current quality standards. First, there is no single set of standards
that can be used across all IDA care in England. Second, those that are available are inconsistently applied:
for example, an analysis of quality standard 2 from the BSG guidelines (see above) found that the number of
patients receiving upper GI investigation ranged from 20.0% to 98.2% across different CCGs in England.29
Third, available quality standards are not built into the formal assessment and remuneration of IDA care: for
example, there are no IDA-related indicators within the General Medical Services contract QOF.30
*Such as the British Society of Gastroenterology, Primary Care Society for Gastroenterology, Renal Association, British Renal Society, British
Society for Haematology, British Cardiovascular Society, British Geriatrics Society, Royal College of General Practitioners, Anaemia Nurse
Specialist Association, etc. Including, but not limited to, the British Kidney Patient Association, Kidney Research UK, Crohns and Colitis UK,
and Crohns in Children Research Association
Case study: Enhancing Quality and Enhanced Recovery programme in Kent, Surrey and Sussex32
Within this programme, clinical staff in the South East of England have agreed a number of key processes and outcome
measures to ensure patients receive the best possible care in selected conditions (e.g. hip and knee replacement
surgery, heart attack, heart failure and pneumonia). Ideal pathways have been created. The success of NHS Trusts
against individual quality measures can be tracked at www.enhancingqualitycollaborative.nhs.uk/.
Although the current remit is Kent, Surrey and Sussex, there is an opportunity to benchmark performance against the
North West region and internationally with the United States, where similar programmes have been established.
These metrics (and others like them) provide potential models for a national-level dashboard to measure performance
in IDA care.
Large numbers of people in England are affected by IDA, and yet current
management and hence outcomes are suboptimal. Something can and must
be done. This Manifesto describes the key priorities.
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