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Managing inflammatory bowel disease in primary care

Article · October 2013

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Central Manchester University Hospitals NHS Foundation Trust Royal Free London NHS Foundation Trust
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 clinical: CHRONIC ILLNESS
Peer reviewed

Dr Karen Kemp Lecturer and Inflammatory Kay Greveson Royal Free Hospital
PhD, MPhil, BSc (Hons) RGN Bowel Disease Nurse MSc, BSc (Hons) RGN
NIHR Fellow Practitioner Inflammatory Bowel Disease
nurse specialist

Managing inflammatory bowel

disease in primary care
Key learning points:
u Understanding the difference between IBD and other bowel issues
u Managing symptoms of these conditions in primary care
u Following up with patients who are currently symptom-free

T
he prevalence of Long-term conditions is UC is an inflammatory condition causing continuous mucosal
increasing, affecting more than 15 million people in inflammation and ulceration of the colon. The inflammation extends
the UK1. Chronic conditions such as Crohn’s proximally uninterrupted from the rectum and may encompass the
disease and ulcerative colitis affect approximately entire large bowel. The disease follows a relapsing and remitting
240,000 people in the UK.2 The new pattern, with ‘remitting’ defined as a complete resolution of
commissioning landscape is changing and faces symptoms and mucosal healing and ‘relapse’ defined as a flare of
challenges balancing the increasing burden of symptoms to include rectal bleeding, abdominal pain, urgency to
disease with costs of advances in medical care.3 The emphasis is
on systematic management of chronic disease; managing
long-term conditions in primary care and reducing inappropriate Table 1. Major differences between
use of hospitals and face-to-face appointments. The question is Crohn’s Disease & UlCerative colitis
can all long-term conditions be managed in primary care,
particularly conditions such as Inflammatory bowel disease (IBD), Crohn’s disease Ulcerative dolitis
where numbers encountered in general practice are small and
healthcare professional knowledge of the disease is limited? This Method of  olonoscopy, MRI, CT,
C  ower GI endoscopy
L
article aims to provide an overview of the aetiology, diagnosis and diagnosis capsule endoscopy. and histology.
medical management of IBD and discusses the role of the primary
care and practice nurse in managing these conditions. Clinical  bdominal pain,
A  loody diarrhoea,
B
features diarrhoea, weight loss. urgency,

‘There can often be a delay Fistulating disease. incontinence.

in referring and diagnosing Smoking  ccurs more often in

O  ccurs most often in
O

suspected IBD as patients often smokers. non-smokers.

Potential cure Currently none. Total colectomy.
present in primary care with Anatomy of  ransmural (all layers
T Mucosal only.
non-specific symptoms’ involvement of gut). Rectum and colon,
‘Skip’ lesions (patches starts from the
of inflammation rectum and spreads
Clinical features of IBD interspersed with healthy proximally.
Inflammatory bowel disease (IBD) is a long term chronic bowel tissue).
condition disease comprising of two main diseases, Crohn’s Entire gut from mouth to
Disease (CD) and ulcerative colitis (UC). The aeitology of IBD is anus.
unknown and there is no known cure, although it is widely Most common in
terminal ileum.
accepted that it results from a dysregulated immune response
Often rectal sparing
involving a complex interaction between environmental and genetic
factors4.

74 Nursing in Practice September/October 2013 www.nursinginpractice.com

defecate, increase in stool frequency and the presence of
abnormal colonic mucosa5.
Approximately 50% of patients with UC will relapse in any year
and 30% will require surgery for colectomy and formation of a
stoma6-8. Evidence suggests that patients with UC have an added
risk of developing colorectal carcinoma (CRC)9. The relationship
between UC and CRC has been studied extensively and a thirty
year surveillance analysis showed that this risk is 2.5% after 20
years of disease duration, rising to 7% after 30 years and 10.8% at
40 years10.
CD is characterised by patchy, transmural inflammation which
‘Approximately one third of
patients with CD develop
complicated disease associated
with fistulas, fissures and
strictures’
can affect any part of the gastrointestinal tract, as opposed to UC
which is continuous and affects only the large bowel. The main
clinical symptoms in CD are: diarrhoea; abdominal pain; weight
loss; anaemia; severe fatigue and lethargy.
CD presents as deep ulcers within the mucosa and follows a
different pattern to that of UC. CD may be fistulating (a tract from
one organ to another organ, such as bowel to vagina, or a tract
from bowel to the skin surface) or stricturing (narrowing of the
lumen).
Approximately one third of patients with CD develop
complicated disease associated with fistulas, fissures and
strictures.11 The cumulative mortality of patients with CD is twice
www.nursinginpractice.com
that of the population with death predominantly related to sepsis,
pulmonary embolism, immunsuppressive medical treatment and
complications of surgery.12,13 Up to 50% of patients will require
surgery in the first ten years.14
IBD is complicated by extraintestinal manifestations (EIMs) with
up to 40% of patients affected by them15. The most common EIMs
affect the joints, skin, eyes and hepatobiliary system and are
directly related to the activity of the disease in the bowel: in
general, if the disease is active, the likelihood of EIMs is increased.
However, while some EIMs are disease activity related, large
numbers such as ankylosing spondylitis, are independent of this.
In terms of skin manifestations, patients often present with raised
red painful patches which are typical of erythema nodosum.
Prevalence of IBD
There are approximately 240,000 people living with IBD in the UK.
The prevalance of CD is 145 per 100,000, and UC 243 per
100,000. In a UK population of 60 million this equates to 87,000
people living with CD and 146,000 people living with UC.16 A recent
systematic review reports these figure are rising, with Europe
having the highest prevalence compared to North America, Asia
and the Middle East.17
Importantly, the incidence of CD in children has increased three
fold from 1960 in the UK.2,18,19 This is mirrored both in Europe20 and
North America.21 This continuing rise has clear implications for the
substantial lifelong burden of this disease and the provision of
specialists services.
The cost of caring for patients with IBD in the UK is estimated to
be in excess of £254 million per annum.22 This cost includes
routine follow up appointments in secondary care, of which IBD
patients account for 13% of all gastroenterology outpatient clinics
appointments in the UK. Figures suggest that outpatient clinic
Nursing in Practice September/October 2013 75
 clinical: CHRONIC ILLNESS

made using clinical evaluation along with a combination of

Table 2. Key question to consider during
history taking
Symptoms Stool frequency/consistency, presence of
blood, abdominal pain, urgency, nocturnal
symptoms, pyrexia, unintentional weight
loss, EIMs.
Risk factors Recent foreign travel, smoking, family
history, recent antibiotic or NSAID use.
Investigations in Faecal calprotectin, stool culture,
primary care Laboratory investigations including FBC,
LFT, U&E, B12 and Heamatinics, ESR
AND CRP. Referal to secondary care for
radiological and endoscopic investigation
if red-flag symptoms present.
follow up appointments account for up to one third of the total cost
of IBD care.22-24The peak age of onset for IBD is between ages 15
to 30, even occuring outside of this age range, the economic
burden of IBD is corresondingly high due to this age group, often
leaving them unable to work and contribute to the economy
Diagnosisng IBD
There can often be a delay in referring and diagnosing suspected
IBD as patients often present in primary care with non-specific
‘The “well” IBD patient may be
haematological, endoscopic and radiological investigations. Patients
with IBD may also have ‘sub-clinical’ inflammation that produce IBS
sype symptoms26.
Faecal calprotectin is a simple and accurate non-invastive stool
test that detects colonic inflammation and can help identify
functional IBS related diarrhoea25. Table 2 highlights they key
considerations during the patient consultation.
Medical management of IBD
The key objectives of treament are to increase the time the patient is
in remission, avoid complications from uncontrolled active disease
and establish an acceptable quality of life.
Medical interventions are aimed at symptom reduction by
controlling the inflammatory process, and achievement of ‘mucosal
healing’.27, 28 It is suggested that complete mucosal healing can lead
to improved outcomes and reduce the risk of complications of the
disease.29 Medical therapy for IBD is evolving rapidly and follows a
step up approach30 (Figure 1 - treatment pyramid). Treatments
which aim to maintain remission for both UC and CD combine
immunsuppressive drugs, targeting both the immunologic cascade,
such as azathioprine and methotrexate, and biologic drugs,
(infliximab and adalimumab).31
The burden of IBD
Recently EFFCA (European federation of Crohn’s and ulcerative
colitis organisation) has completed a comprehensive 24 country
European wide survey which aimed to obtain a multinational

reviewed in primary care by the perspective of the impact of living with IBD.32 The survey, which had
nearly 5000 responses, found that diagnosis took longer than five
practice nurse, supported by the years in 18% of the respondents, with 64% presenting to emergency
IBD team’ care with symptoms of IBD prior to the diagnosis.
This emphasises the difficulty in diagnosing IBD and the need for
symptoms that could be confused Irritable bowel syndrome (IBS). education in Primary Care. IBD impacts on the individual’s daily life,
The major distinction between theses two conditions is the education and employment. Unemployment and sick leave is more
presence of ‘reg-flag’ indicators such as unintentional weight loss, common in IBD patients compared to the general population. 33,34
rectal bleeding, and abnormnal biochemical markers including
raised inflammatory markers (CRP, ESR) and anaemia., which The role of primary care and IBD
necessitate a referal to seconary care.25 The diagnosis of IBD is There is ambiguity surrounding the role of primary care, GP and
practice nurses concerning IBD. There are documented problems
with diagnosing IBD in primary care and recognising it as a
Figure 1. Pyramid of care differential diagnosis with IBS, as patients report prolonged
problems with initial diagnosis35 and treatment for IBD related
problems prior to diagnosis.32
The use of faecal calprotectin to assist in the diagnosis of IBD in
primary care is currently under scrutiny by NICE. The test is
designed to aid in the identification of those individuals who are at
Biologics,
surgery
an increased risk of diseases characterised by inflammation of the
bowel with individuals with increased levels of faecal calprotectin
referred for further investigation. Vigilance for a differential diagnosis
Prednisolone, of IBD (see Table 2) combined with faecal calprotecin, will
6-Mercatopurine, undoubtedly assist in the timely diagnosis of patients with
Azathiopurine, Budensonide
suspected IBD.
Many IBD centres now work with primary care within shared
care protocols. This is not an “offloading” of work by secondary care
Aminosalycialtes (5 aASA),
but a move by the IBD team to bring together the healthcare
antibiotics professionals who may provide the best possible care at the right
time and right place for the patient with IBD.
Blood monitoring, annual reviews, medicines management
reviews are all common occurrences with patients with LTCs,

76 Nursing in Practice September/October 2013 www.nursinginpractice.com

 including patients with IBD. The “well” IBD patient may be
reviewed in primary care by the practice nurse, supported by the
IBD team. Education and support from the IBD team in
managing and supporting these patients within primary care is
of paramount importance if we are to meet the challenges of
today’s NHS.
Conclusion
Patients with IBD are predominantly managed by secondary care
and follow a traditional, scheduled follow-up cycle, even when
“well”, which is now unsustainable and unsatisfactory. Patients with
IBD should have access to specialist care which is delivered
according to their values and needs.
There is also concern in the UK that services for patients with
long term conditions are not orgnised to promote independence
with silo working in primary and secondary care. There is a need to
bring these together formally through the development of models of
care.
Shared care protocols and closer working with integrated care
teams can bridge the gap between primary and secondary care for
all patients with IBD. This is a challenging situation but one that is
not unsurmountable.
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