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Review article 1
Patient knowledge in inflammatory bowel disease:
the Crohn’s and Colitis Knowledge Score
Richard A. Wardle and John F. Mayberry
In the UK, key professional organizations have joined
to provide inflammatory bowel disease (IBD) standards to
be delivered by the NHS, highlighting the importance
of patient education and support. The Crohn’s and Colitis
Knowledge Score (CCKNOW) is a validated multiple-choice
questionnaire on the subject of IBD that is able to objectively
quantify the level of patient knowledge. The aim of this study
was to summarize the findings of the CCKNOW, in particular,
the current level of patient knowledge and the implications
clinically. Literature search was conducted using Medline,
Google Scholar and the Cochrane Library, compiling results
of studies using the CCKNOW to date. In the UK, a median
score of 10 was achieved by participants with IBD
in Leicestershire in 1999. Recent surveys in the Northwest
and Pennine Trust achieved median scores of 9 and 7,
respectively. Knowledge deficits regarding fertility and
pregnancy were found, as seen in 1999. Studies in Canada
and Iran achieved median scores of 13 and 4, respectively.
Sri Lanka achieved a mean score of 6.86 (range 1–16).
Higher CCKNOW scores were associated with the use
of adaptive coping strategies. A significant positive link
was found between patient knowledge and anxiety levels.
There was no significant difference in CCKNOW scores
between patients with the complication of colorectal cancer
versus control populations. In the UK, patient knowledge
of IBD may be no better than in 1999. The subjects of fertility
and implications for pregnancy are particular areas of deficit.
Further knowledge shortfalls may exist in the developing
countries. Evidence suggests that improving knowledge may
empower patients to use more adaptive coping strategies
but may not be effective in reducing anxiety or the risk
complications such as colorectal cancer. Eur J Gastroenterol
c 2013 Wolters Kluwer Health | Lippincott
Hepatol 26:1–5 Williams & Wilkins.
Introduction
surgery [3–5]. The incidence of IBD varies considerably
across the globe with the highest rates traditionally
reported in northern and western Europe as well as North
America. Lower rates are found in Africa, South America
and Asia, including China [6,7].
In the UK, key professional organizations have collaborated
to provide inflammatory bowel disease (IBD) standards to
be delivered by the NHS, highlighting the importance of
patient education and support [1]. Few literatures exist,
however, regarding what patients with IBD understand of
their illness. This review aims to summarize the findings
of the Crohn’s and Colitis Knowledge Score (CCKNOW), a
tool originally developed to assess the effectiveness of
education for patients with IBD [2]. It has been used
extensively since its development in contexts varying from
the assessment of educational tools to quantification of
patient understanding and subsequent clinical implications.
Inflammatory bowel disease
IBD describes two conditions, ulcerative colitis (UC) and
Crohn’s disease (CD), both of which are chronic
inflammatory conditions affecting the gastrointestinal
tract. They follow a relapsing and remitting course
and diagnosis is usually made in early adult life, meaning
high costs for IBD patients and society as a result of
extensive laboratory tests, procedures, hospitalization and
All supplementary digital content is available directly from the corresponding
author.
c 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins
0954-691X European Journal of Gastroenterology & Hepatology 2014, 26:1–5
Keywords: CCKNOW, Crohn’s disease, inflammatory bowel disease, patient
education, ulcerative colitis
Gastrointestinal Research Unit, Leicester General Hospital, Leicester, UK
Correspondence to Richard A. Wardle, MrPharmS, 27 South Copse,
East Hunsbury, Northampton NN4 0RY, UK
Tel: + 44 775 486 3831; e-mail: [email protected]
Received 30 June 2013 Accepted 13 August 2013
The CCKNOW
The CCKNOW is a multiple-choice questionnaire on the
subject of IBD developed by Eaden et al. [2]. Originally
consisting of 30 questions, factor analysis reduced it to 24
by eliminating questions with a poor ability to discriminate between groups of participants. The 24 questions
are divided into five areas: general knowledge (eight),
anatomy (four), medications (five), diet (two) and
complications (five). Scoring of the questionnaire is one
point for each correct answer with no negative marking. It
was originally piloted on a random selection of participants with differing IBD knowledge levels; junior doctors
(17), nurses (16) and ward clerks (20) and scores were
found to differ significantly between the groups (median
22, 16 and 5, respectively, P < 0.0001). The validated
CCKNOW test was then completed by 354 UC and CD
patients on the Leicestershire IBD database reporting a
median score of 10 (95% confidence interval 9–10) [2].
Results showed no significant difference in score
DOI: 10.1097/MEG.0b013e328365d21a
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2 European Journal of Gastroenterology & Hepatology 2014, Vol 26 No 1
between patients with UC or CD. Patients who were
members of the National Association of Crohn’s and
Colitis (NACC), however, achieved statistically significantly higher scores than nonmembers. Furthermore,
recognized statistical tests show the CCKNOW to be a
valid, reliable and readable questionnaire [2].
Besides the CCKNOW, the only other published questionnaire for IBD was developed by Jones et al. [8],
entitled the Knowledge Questionnaire. Yet, apart from
the sole original study, limited evidence exists documenting its use. In comparison, the CCKNOW has been
embraced internationally, fuelling research into educational tools and measures of patient and staff IBD
understanding.
Use of the CCKNOW
The greatest application of the CCKNOW to date has
been the quantification of patient’s disease understanding both inside and outside of the UK.
Within the UK, national recommendations exist to target
IBD patient education and support, for example ensuring
good quality predischarge information on medication, selfcare and follow-up [1,9]. Combined with the wealth of
information already available from patient groups, books
and the worldwide web, it would be reasonable to expect
that general knowledge among IBD patients should be
improving [10–12]. The most recent survey was based
across eight different hospital trusts in the northwest of
England [13]. From a total of 127 completed questionnaires, the median CCKNOW score was 9. In 2011, the
Pennine Acute Hospitals NHS Trust in Manchester asked
patients to complete a total of 236 CCKNOW questionnaires [14]. Here the median score was 7, with weaknesses
highlighted in surgical knowledge, fertility and implications
regarding pregnancy. When compared with the original
CCKNOW development study, the scores imply that
knowledge of IBD may be no better in the UK than when
surveyed in 1999 where the median score was 10. The
original study also found similar deficiencies in knowledge
regarding fertility and implications for pregnancy. These
results suggest that the national recommendations and
additional resources have less effect.
In terms of NHS healthcare delivery, the effect of increased
time pressures and limited resources may be the most
obvious candidate for the apparent failure of improvement [15–17]. In a recent survey of IBD patients, at least
one in 10 reported suboptimal aspects of discharge
information about drug side effects, warning signs to watch
for or how to manage their condition once home [9]. More
conventional teaching strategies led by a nurse, including
patient classes or group-based discussions, have shown
significant improvements in knowledge when assessed with
the CCKNOW [18,19]. Why these techniques are not being
implemented may be because of the previously mentioned
pressures within the healthcare system. Alongside this,
although the internet is a powerful tool, patient’s access to
inaccurate information may be damaging [10–12]. The
CCKNOW itself has been used to show that significant
improvements can be made after short periods of time with
interactive multimedia applications and internet-based
training tools [20,21]. Again this potential is not being
realized and professionals may not be effectively directing
patients to reliable and accurate health websites [22]. The
subjects of fertility and implications for pregnancy are
particular areas of deficit in the original and more recent
studies. Specifically, very few patients understood that in
men, sulphasalazine can cause reversible oligospermia, and
women with active CD may find it difficult to conceive.
This may reflect the conflicting clinical evidence available
in these areas or hesitancy in broaching such sensitive
topics [23]. Although it is easy to point at the healthcare
systems’ potential faults, patients’ own attitudes toward
what they should know about their disease may also be
changing with time; however, few literatures exist in this
area. It may also be argued that because of the medical and
technological advances since 1999, revalidation of the
questionnaire itself may be required.
In Canada, 47 IBD patients achieved a median score of 13
in a study by Paterson et al. [24], the highest results
published to date. With the incidence of IBD beginning
to stabilize in high incidence areas such as northern
Europe and North America, but continuing to rise in
traditionally lower incidence areas including Asia and
other parts of the developing world, there is growing
interest in what patients in these areas understand about
their disease [25]. In the first survey of its kind, 100
patients in Iran completed a Farsi-translated version of
the CCKNOW with a median score of 4, significantly
lower than that seen in the developed countries [26]. In
addition, 184 patients in Sri Lanka have since completed
a Sinhala-translated questionnaire with a mean score of
6.86 (range 1–16). No median score was provided by this
study [27]. Both studies found a common deficit in
knowledge regarding the risk of IBD complications. On
the basis of these results, generally speaking, lower
CCKNOW scores are achieved in the developing
countries in comparison with western countries.
Why such differences exist between developing countries
and the West is unknown, but may be attributed to lower
incidence and prevalence rates, poorer quality healthcare
services and limited access to web-based and published
material in native languages [28]. Interestingly, unemployed or lesser educated patients in the Sri Lankan
study achieved significantly poorer CCKNOW scores
than their employed or educated counterparts, alluding
toward the effects that economic and social differences
can exert within a country [27]. It does not seem
unreasonable to suggest that such interpretation could be
extrapolated to an international level to help explain
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Patient knowledge in IBD: the CCKNOW Wardle and Mayberry 3
differences between developed and still developing
countries. How successfully the CCKNOW was translated into Farsi or Sinhala may have also contributed to
their CCKNOW scores. For this reason there may be a
case for revalidation of the translated versions of the
CCKNOW, although no language difficulties were reported by either study.
It must be stated that these CCKNOW score comparisons do not take into account many other variables that
exist between the study populations. Although this
review has presented all of the available data, it is
somewhat limited by the detail of the results produced.
Confidence intervals and interquartile ranges were
generally unavailable.
Clinical implications
When looking at other chronic conditions besides IBD,
educational interventions have successfully been shown
to improve compliance in patients with type-1 diabetes
mellitus, and to reduce hospitalizations in patients
suffering from asthma [29,30]. As mentioned previously,
validated educational tools exist to improve patients’
understanding of IBD but the real question is whether
increased knowledge translates into improved disease
outcomes and quality of life.
Moradkhani et al. [31] hypothesized that individuals with
greater IBD knowledge would exhibit improved coping
strategies and then tested this theory by using the
CCKNOW and the ‘Brief COPE’ questionnaire. The Brief
COPE included 28 items, measuring 14 different recognized coping reactions. Some of these reactions are known
to be adaptive, whereas others are more detrimental to the
coping process. The Brief COPE therefore provides
researchers a way to assess important coping responses
quickly and reliably [32]. A significant positive association
was found between IBD knowledge and active coping
scores, instrumental support scores, planning scores and
emotional support scores. Greater IBD knowledge therefore seems to be associated with the utilization of more
adaptive coping strategies in IBD patients. This may be
advantageous as it has been shown that IBD patients have
significantly poorer psychological health and view their
general health more negatively than nonsufferers [33]. It
should be noted that this study used the 30-item
CCKNOW questionnaire including questions thought to
be poorer at discriminating between groups of participants
than the more widely used 24-item questionnaire.
Conversely, a significant link has been found between
increased patient knowledge and anxiety levels. The
CCKNOW was completed alongside a short IBD questionnaire (SIBDQ) to assess disease-related quality of
life [34]. Hospital Anxiety and Depression Scores
were used to assess anxiety (HADS-A) and depression
(HADS-D). The results echo those by Larsson et al. [35]
who reported that patients with high anxiety levels
appeared not to experience any benefits in terms of
reduced anxiety after participating in an education
programme. Educational tools may therefore be ineffective in combating anxiety in patients with IBD.
Widespread use of the CCKNOW has highlighted a
common deficit in knowledge regarding the complications of IBD, particularly in the developing countries [26,27]. In theory, better educated patients should
be more likely to manage their disease appropriately, for
example by attending colonoscopies or complying with
medication and reduce their risk of complications such as
colorectal cancer. Whether patient knowledge factored
into an increased risk of UC patients developing colorectal cancer has been asked by a retrospective case–
control study [36]. Interestingly, the results were not as
hypothesized; the study found no significant difference
in the CCKNOW scores between case and control
populations.
Drawbacks of the CCKNOW
The interpretation of the scores produced by the
CCKNOW questionnaire remains its biggest challenge.
Most studies have struggled to provide valuable discussion after using the questionnaire and no study so far has
attempted to answer the difficult question of what an
appropriate level of patient knowledge actually is.
Instead, basic comparisons have been made between
scores from their own study populations and other
studies, resulting in an overall approximation of ‘poor’
or ‘average’ patient knowledge to base their conclusion.
Although comparisons may be useful in highlighting
weaker study populations, they are of no use individually
where no thresholds exist. This is a huge disappointment
as much effort has gone into conducting these studies. In
the development of the CCKNOW, Eaden et al. [2] did
provide a clue as to score interpretation by presenting
scores achieved by junior doctors, staff nurses and ward
clerks, which may be used as a comparative guide.
However, owing to limited distribution, it has seldom
been used. What then should be expected of an IBD
patient? In the era of self-management, one may expect a
score above that of a nonspecialist staff nurse to be ‘good’,
above a ward clerk to be ‘average’ and below that ‘poor’. If
this was the case, then all of the studies included in this
article would fit into the ‘average’ category apart from
that carried out in Iran, which would be deemed ‘poor’.
This interpretation makes the CCKNOW more useful to
researchers but shows little differentiation between the
results produced by the majority.
Very few practical issues with the use of the CCKNOW
have been reported. Elkjaer et al. [21] noted that half of
the patients in their study felt that questions were too
difficult. The study also questioned the relevance of the
two questions relating to diet as they concern lactose
intolerance and elemental feeds, topics which they felt
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4 European Journal of Gastroenterology & Hepatology 2014, Vol 26 No 1
did not cover patients’ dietary concerns. Subasinghe and
colleagues felt that as colonoscopy is widely used in the
follow-up of patients with IBD, a question regarding this
may add value to the questionnaire (D. Samarasekera,
personal communication, 17 April 2013).
Richard A. Wardle contributed data collection, writing
and editing of the review article. Professor John F.
Mayberry contributed data collection, editing and final
critique of the review article. Both authors approved the
final version of this manuscript. The help of Andrew
Wardle in editing the final version of this article is greatly
appreciated.
The future
As individual patients may deviate somewhat from their
populations’ median score, this may make the CCKNOW
more helpful when trying to assess what an individual
understands of their condition relative to other IBD
patients. Regular use in patients awaiting outpatient
appointments, for example, may highlight to the clinician
patients with particularly poor knowledge. It will also
help to identify topics that should be given extra
attention. These patients could then be targeted for
increased access to educational tools or extra appointments with a specialist nurse.
The CCKNOW may hopefully encourage the development of newer more precise questionnaires aimed
specifically at patients. One such example is the ‘Crohn’s
and Colitis Pregnancy Knowledge Score’, CCPKnow,
a tool developed by Selinger et al. [37] to test patient’s
knowledge of IBD and its treatment before and during
pregnancy. The CCPKnow has been administered to 145
women with IBD and nearly half had poor knowledge,
identifying a pressing need for better education.
Conflicts of interest
There are no conflicts of interest.
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Conclusion
The CCKNOW has revealed that in the UK, the current
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type of research more feasible.
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Guarantor of the article: Richard A. Wardle.
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