Article

Waters BM, Jensen L, Fedorak RN. Effects of formal education for patients with inflammatory bowel disease: a randomized controlled trial

Faculty of Nursing, University of Alberta, Edmonton.
Canadian journal of gastroenterology = Journal canadien de gastroenterologie (Impact Factor: 1.98). 05/2005; 19(4):235-44. DOI: 10.1155/2005/250504
Source: PubMed

ABSTRACT

Patients with inflammatory bowel disease (IBD) suffer physical dysfunction and impaired quality of life (QOL), and need frequent health care. They often lack knowledge about their disease and desire more education. Educational interventions for other chronic diseases have demonstrated reduced health care use and increased knowledge, medication adherence and QOL.
Sixty-nine participants were randomly assigned to formal IBD education and standard of care (pamphlets and ad hoc physician education) or standard of care alone. Assessment of IBD knowledge and QOL occurred at baseline, immediately posteducation and eight weeks posteducation. Participants documented medication adherence and health care use in diaries. Patient satisfaction was assessed at the end of the study.
The education group had higher knowledge scores (P=0.000), perceived knowledge ratings (P=0.01) and patient satisfaction (P=0.001). There was a lower rate of medication nonadherence and health care use for the education group, but the differences were not significant. QOL indices did not change. Significant correlations were found for increased health care use in patients with poorer medication adherence (P=0.01) and lower perceived health (P=0.05).
Formal IBD patient education improves knowledge, perceived knowledge and patient satisfaction. Further study of long-term effects may better demonstrate potential benefits for QOL, medication adherence and health care use.

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Can J Gastroenterol Vol 19 No 4 April 2005 235
Effects of formal education for patients
with inflammatory bowel disease:
A randomized controlled trial
Barbara M Waters RN(EP) MN
1
, Louise Jensen RN PhD
1
, Richard N Fedorak MD FRCP
2
1
Faculty of Nursing;
2
Division of Gastroenterology, Faculty of Medicine, University of Alberta, Edmonton, Alberta
Correspondence: Dr Louise Jensen, Faculty of Nursing, University of Alberta, 3rd Floor, Clinical Sciences Building, Edmonton, Alberta
T6G 2G3. Telephone 780-492-6759, fax 780-492-2551, e-mail louise.jensen@ualberta.ca
Received for publication July 29, 2004. Accepted January 3, 2005
BM Waters, L Jensen, RN Fedorak. Effects of formal
education for patients with inflammatory bowel disease:
A randomized controlled trial. Can J Gastroenterol
2005;19(4):235-244.
BACKGROUND: Patients with inflammatory bowel disease (IBD)
suffer physical dysfunction and impaired quality of life (QOL), and
need frequent health care. They often lack knowledge about their
disease and desire more education. Educational interventions for other
chronic diseases have demonstrated reduced health care use and
increased knowledge, medication adherence and QOL.
METHOD: Sixty-nine participants were randomly assigned to for-
mal IBD education and standard of care (pamphlets and ad hoc
physician education) or standard of care alone. Assessment of IBD
knowledge and QOL occurred at baseline, immediately posteduca-
tion and eight weeks posteducation. Participants documented med-
ication adherence and health care use in diaries. Patient satisfaction
was assessed at the end of the study.
RESULTS: The education group had higher knowledge scores
(P=0.000), perceived knowledge ratings (P=0.01) and patient satis-
faction (P=0.001). There was a lower rate of medication nonadher-
ence and health care use for the education group, but the differences
were not significant. QOL indices did not change. Significant corre-
lations were found for increased health care use in patients with poorer
medication adherence (P=0.01) and lower perceived health (P=0.05).
CONCLUSION: Formal IBD patient education improves knowl-
edge, perceived knowledge and patient satisfaction. Further study of
long-term effects may better demonstrate potential benefits for QOL,
medication adherence and health care use.
Key Words: Health care use; Inflammatory bowel disease;
Medication adherence; Patient education; Patient satisfaction; Quality
of life
Les effets d’une formation systématique des
personnes atteintes d’une maladie inflammatoire
de l’intestin : Un essai aléatoire et contrôlé
HISTORIQUE : Les personnes atteintes d’une maladie inflammatoire de
l’intestin (MII) souffrent d’une dysfonction physique et d’une diminution
de leur qualité de vie (QDV), et ils ont besoin de soins de santé fréquents.
Ils connaissent mal leur maladie et veulent être plus informés. Les inter-
ventions pédagogiques à l’égard d’autres maladies chroniques ont démon-
tré une diminution des recours aux soins de santé et une augmentation des
connaissances, du respect de la pharmacologie et de la QDV.
MÉTHODOLOGIE : Soixante-neuf participants ont été aléatoirement
divisés entre une formation systématique sur les MII et des normes de dili-
gence (brochures et information ponctuelle transmise par le médecin) ou
des normes de diligence seulement. Les connaissances sur les MII et la
QDV ont été évaluées en début d’étude, dès après la formation et huit
semaines après la formation. Les patients ont documenté leur respect de la
pharmacologie et leur recours à des soins de santé dans un journal. La
satisfaction des patients a été évaluée en fin d’étude.
RÉSULTATS : Le groupe de formation obtenait un meilleur pointage en
matière de connaissances (P=0,000), de connaissances perçues (P=0,01)
et de satisfaction des patients (P=0,001). Le taux de non-respect de la
pharmacologie et de recours aux soins de santé était plus faible dans le
groupe de formation, mais les différences n’étaient pas significatives. Les
indices de QDV n’ont pas changé. Des corrélations significatives ont été
découvertes pour ce qui est de l’accroissement du recours aux soins de santé
chez les patients qui respectaient moins leur pharmacologie (P=0,01) et
qui se percevaient en plus mauvaise santé (P=0,05).
CONCLUSION : La formation systématique des patients atteints d’une
MII accroît les connaissances, les connaissances perçues et la satisfaction
des patients. Une étude plus approfondie des effets à long terme pourrait
mieux démontrer les bénéfices potentiels à l’égard de la QDV, du respect
de la pharmacologie et du recours aux soins de santé.
I
nflammatory bowel disease (IBD) is a chronic illness that has
significant effects on the physical, psychological and social
well being of the individual. The symptoms and complications
of the disease can impair physical health considerably (1-3).
Quality of life (QOL) suffers, particularly when the disease is
active (4-8). The disease may affect employment, education
and childbearing (9-14). Disease symptoms, impaired emo-
tional and social functioning, disease severity and complica-
tions can lead to frequent health care use (15,16). The
multifaceted impact of the disease on the individual requires
an integrated approach to disease management that incorpo-
rates biological and psychosocial aspects. The biopsychosocial
approach includes medical therapy, psychosocial assessment
and support, and patient education (17-19).
Patients have knowledge deficits about IBD (20-24).
Surveys have consistently demonstrated patients’ desire for
more information about IBD, including outcomes, risk of can-
cer and new developments in disease management (25-31).
Studies have revealed that patients are concerned about the
impact of the disease, sexual intimacy, complications and body
stigmata, and that those who experience greater symptoms
report a lower level of health (16,32). Finally, those that per-
ceive they lack adequate information about their disease report
poorer health (32).
ORIGINAL ARTICLE
©2005 Pulsus Group Inc. All rights reserved
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Structured educational interventions for other chronic ill-
nesses have demonstrated decreased health care use and
improved knowledge, psychosocial parameters, outcomes and
adherence to medical regimens (33-40). Educational interven-
tions for patients with IBD have consistently demonstrated
improved knowledge, but no change in QOL indicators. Eaden
et al (22) evaluated the efficacy of a video and pamphlet versus
pamphlet alone as a method of educating ulcerative colitis
patients about cancer risk and surveillance. Knowledge levels
improved significantly with both interventions. Quan et al
(41) reported improved knowledge levels after providing 3 h
IBD workshops to members of the public. Schreiber et al (42)
reported improved patient knowledge with a CD-ROM educa-
tion program, but no change in QOL, though there was
improvement in a disease-time trade off test. In a study of
patients educated in disease self-management, Robinson et al
(43) found improved adherence and lower health care use.
Kennedy et al (44) developed an evidence-based guidebook on
ulcerative colitis in collaboration with patients and health care
professionals. Knowledge levels were significantly higher in
the 132 patients in the group who received the guidebook
compared with the 127 control patients. No change in QOL or
anxiety levels was observed. Larsson et al (45) provided an
eight-session education series to 26 IBD patients assessed to be
at risk for high anxiety. Patients in the education program had
higher satisfaction with educational information subsequently
provided in the health care setting than did controls (n=17) at
six-month follow-up, but there was no change in anxiety levels
or QOL. Borgaonkar et al (46) reported that QOL scores wors-
ened for IBD patients who had been provided with educational
pamphlets compared with controls. Although there have been
various educational interventions studied for patients with
IBD, there have been no structured, comprehensive education
programs evaluated.
The purpose of the present study was to evaluate the effects
of a formalized education program on patients with IBD. The
researchers hypothesized that participants in the education
program would demonstrate improved knowledge scores, per-
ceived knowledge levels, QOL indices, perceived health status,
medication adherence and patient satisfaction posteducation
compared with those receiving the current standard of ad hoc
education. It was further hypothesized that the education
group would demonstrate a lower level of health care use.
METHODS
Over a four-week period, patients who were 17 years of age and
older with a diagnosis of IBD confirmed by radiographic/endoscopic
examination and/or histology/surgical pathology, and who lived
within a 2 h drive of the University of Alberta Hospital
(Edmonton, Alberta) were approached to participate in the
study. Patients received information by mail with a follow-up
telephone call or were approached during clinic visits. Inclusion
criteria included the ability to attend the education program
and fluency in written and spoken English. Those with short gut
syndrome, disease limited to ulcerative proctitis, a proctocolec-
tomy for ulcerative colitis, an ostomy, on total parenteral nutri-
tion, or who underwent surgery during the study that required
an ostomy, were excluded because these populations have
unique health management issues. Consent was obtained, base-
line data were collected, IBD literature and patient diaries were
provided, and participants were randomized during an enroll-
ment clinic visit.
Both the control and education groups received the current
standard of care consisting of physician (primary care physician
and gastroenterologist) visits, at the discretion of the physicians
and patients, with physician-directed ad hoc teaching during vis-
its and the presentation of printed educational literature. Printed
educational literature included that provided by the Crohn’s and
Colitis Foundation of Canada and local gastroenterologists. The
education group, in addition to standard of care, attended a 12 h,
structured education program provided in 3 h blocks over four
consecutive weeks. To ensure no participants were disadvantaged,
the control group was offered the full education program after the
study data collection was completed.
The education program included general information about
basic gut and immune system anatomy and physiology, explored
the pathophysiology of IBD, and reviewed current and future ther-
apy. Group discussion about disease management was tailored to
address the identified worries and concerns of the subjects derived
from baseline data. The principles of adult teaching and learning
were applied, and a variety of teaching strategies were used to
enhance learning and improve critical thinking skills. Remedial
teaching was offered in the event of a missed class. Those partici-
pants who missed more than one class were removed from the data
set, but continued to attend the education program. Data were
collected at three time points: baseline (T1), immediately post-
education (T2) and eight weeks posteducation (T3) (Figure 1).
The education program was designed and provided by the
Nurse Practitioner, Division of Gastroenterology, in 3 h blocks
over four consecutive weeks. The first two classes focused on pro-
viding comprehensive information about the anatomy and physi-
ology of the gut and immune system, ulcerative colitis and Crohn’s
disease pathology and resultant symptomology, and current thera-
peutic approaches. Commonly used medications were reviewed
with a focus on the purpose of the medication, how it worked, the
most common side effects and how to effectively manage them.
The last two classes were dedicated to addressing topics identified
as important from data analysis collected at baseline. The dieti-
cian from gastroenterology provided nutrition management edu-
cation tailored to the diseases and their common complications.
Additionally, the opportunity for individual dietary counselling
was offered to interested participants. A surgeon presented infor-
mation about surgical interventions, focusing on how surgical
options are determined and the benefits of surgery. Following this
presentation, a patient openly shared her experience living with
an ostomy. Finally, the participants worked in small groups with
facilitators discussing the psychological and interpersonal impacts
of IBD, sexuality and childbearing, symptom management, stress
reduction, cancer risks and surveillance, and medication manage-
ment. The participants received copies of each presentation, a
booklet on IBD medication and management, and an overview of
the group discussion information.
Knowledge was assessed using two different, previously validated
knowledge questionnaires: the Crohn’s and Colitis Knowledge
Questionnaire (CCKNOW) designed by Eaden et al (22), and the
Knowledge Questionnaire (KQ) developed by Jones et al (23).
The use of both questionnaires facilitated the examination of sim-
ilar knowledge areas using different testing methods and provided
a larger bank of questions. The Inflammatory Bowel Disease
Questionnaire (IBDQ) and Rating Form for IBD Patient
Concerns (RFIPC), both validated research tools, were used to
assess QOL (4,5,8,16,47-48). These two instruments are comple-
mentary, providing a more comprehensive QOL assessment,
because the IBDQ evaluates symptom and functional status and
Waters et al
Can J Gastroenterol Vol 19 No 4 April 2005236
Waters.qxd 3/24/2005 1:35 PM Page 236
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Effects of formal IBD patient education
Can J Gastroenterol Vol 19 No 4 April 2005 237
IBD outpatient clinic
Screening
Inclusion/exclusion criteria
Excluded
• Patient declined
• Short gut syndrome
• Total-parenteral nutrition
• Ostomy or proctocolectomy
for UC
Randomized
Baseline data collection (n=44)
• Demographics & medical history
• CDAI/AI
• KQ
• CCKNOW
• VAS for perceived IBD knowledge
• IBDQ
• RFIPC
• VAS for perceived health status
Immediately posteducation (n=41)
• KQ
• CCKNOW
• VAS for perceived IBD knowledge
• IBDQ
• RFIPC
• VAS for perceived health status
8 weeks posteducation (n = 38)
• CDAI/AI
• KQ
• CCKNOW
• VAS for perceived IBD knowledge
• IBDQ
• RFIPC
• VAS for perceived health status
• Medication regimen adherence
• Health care use
• Patient satisfaction
Education Group
Education program & standard care
Baseline data collection (n=45)
• Demographics & medical history
• CDAI/AI
• KQ
• CCKNOW
• VAS for perceived IBD knowledge
• IBDQ
• RFIPC
• VAS for perceived health status
Immediately posteducation (n=34)
• KQ
• CCKNOW
• VAS for perceived IBD knowledge
• IBDQ
• RFIPC
• VAS for perceived health status
8 weeks posteducation (n=31)
• CDAI/AI
• KQ
• CCKNOW
• VAS for perceived IBD knowledge
• IBDQ
• RFIPC
• VAS for perceived health status
• Medication regimen adherence
• Health care use
• Patient satisfaction
T 1
T 2
T 3
Education program
Control Group
Informal education at clinic visits
Consent
Release of medical information
Figure 1) Study design. AI Activity Index (ulcerative colitis); CCKNOW Crohn’s and Colitis Knowledge Questionnaire; CDAI Crohn’s Disease
AI; IBD Inflammatory bowel disease; IBDQ Inflammatory Bowel Disease Questionnaire; KQ Knowledge Questionnaire; RFIPC Rating form for
inflammatory bowel disease patient concerns; T1 Baseline; T2 Immediately posteducation; T3 Eight weeks posteducation; UC Ulcerative colitis;
VAS Visual analogue scale
Waters.qxd 3/24/2005 1:35 PM Page 237
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the RFIPC addresses the psychosocial aspects of the disease.
Perceived knowledge and health levels were assessed using
colour-graded visual analogue scales (VAS) to which a 10-point
scale was subsequently applied for quantification. Disease severity
was assessed using the validated Crohn’s Disease Activity Index
(49-50) and Seo et al’s Activity Index for ulcerative colitis
(51-53). Participant satisfaction with medical care and the educa-
tion program was assessed with Likert scale questionnaires devel-
oped by the researchers.
The effect of demographics (sex, age, level of education), dis-
ease (disease type, severity, duration, comorbid illness) and IBD
education (previous IBD education programs, participation in IBD
studies, Internet use, membership in the Crohn’s and Colitis
Foundation of Canada [CCFC] and attendance at the CCFC
Support Group [CCFCSG]) on the outcome variables was also
assessed. The effect of reading the provided IBD pamphlets on the
control group IBD knowledge was also examined.
Descriptive statistics were used to describe participant char-
acteristics, and differences between groups were assessed using
repeated measures ANOVA, independent samples t test, and χ
2
as appropriate at the P=0.05 level of significance. Relationships
among variables were examined using Pearson’s correlation coef-
ficient.
RESULTS
Recruitment
Following a health record review for the selection of potential
participants, an information letter about the study was sent to
259 patients. Successful personal contact by telephone was
made with 167 of the mail recipients (64%), of which 82
(49%) were enrolled and nine (6%) excluded based on the
study criteria. Of the 12 patients approached while attending
their gastroenterologist’s clinic, seven (58%) were enrolled.
Reasons for declining participation in the study included other
commitments (53%), too far to travel (20%), not interested
(12%), felt they did not need further education (6%), too ill
with comorbid disease (4%), the classes were too late in the
day (2%) and lack of transportation (2%). Of the 76 mail
recipients (46%) that declined participation, 63 (83%) indi-
cated that they would like to participate in an education pro-
gram if offered again in the future.
Sixty-nine of the 89 enrolled participants (78%) completed
the study (education group: n=31; control group: n=38).
Eleven education program participants were excluded from
analysis when they missed more than one class. Reasons for
missing classes included poor winter driving conditions (n=2),
conflicts with employment/postsecondary education (n=6),
and IBD exacerbation/complications (n=3). Of the remaining
34 education group participants, three did not complete their
questionnaires at T2 or T3. Six control group participants did
not complete both T2 and T3 questionnaires. Those who did
not complete all questionnaires were excluded from analysis.
Reasons for incomplete questionnaires included illness (n=2),
death in the family (n=1), lost in the mail (n=3) and lost to
follow-up (n=3).
Sample
Of the 89 participants, there were 51 males and 38 females with
an age range of 18 to 74 years. Educational preparation included
junior high school (n=6), high school (n=35), college/
trade/technical school (n=27) and university (n=21).
Comparison of the control and education groups revealed no
statistically significant differences on demographic variables.
Disease severity was similar in both groups and did not change
over the course of the study. There was no difference between
groups for IBD study participation, prior IBD education,
Internet use or CCFCSG attendance. More participants in the
education group (n=17, 38%) than in the control group (n=6,
13%) had active or former membership in the CCFC
(χ
2
=6.77, P=0.009). This difference had no effect on study
outcomes (Table 1).
Knowledge
The KQ and CCKNOW assess knowledge levels in five topic
categories: diet, gut anatomy and physiology, general IBD
knowledge, complications and medications. Baseline mean
KQ scores were similar for the control and education group
(17.24/37 and 17.13/37; 46%, respectively) and there was no
significant difference between CCKNOW scores 10/24 (41%)
and 12/24 (50%), respectively (Table 2). Knowledge levels
improved over the course of the study (KQ: F=96.71, P=0.000;
CCKNOW: F=118.87, P=0.000); however, the education
group total mean scores were higher at T2 and T3 (KQ:
F=20.16, P=0.000; CCKNOW: F=14.22, P=0.000) (Figure 2).
No significant difference was found at baseline or over time
when those in the control group (n=25, 65%) who read the
provided IBD literature were compared with those who did not
(n=13, 34%).
Higher baseline knowledge scores were found for those who
received prior formal IBD education (KQ: t=2.19, P=0.031;
CCKNOW: t=2.91, P=0.005) or were members of the CCFC
Waters et al
Can J Gastroenterol Vol 19 No 4 April 2005238
TABLE 1
Baseline comparison of participant characteristics
Variable Education
n=44 n=45 P
Mean age (years) 45.0±13.5 40.3±12.8 0.094
Male/Female 22/22 29/16 0.122
Disease characteristics
Ulcerative colitis/Crohn’s disease 18/26 14/31 0.229
Mean disease duration (years) 13.4±9.84 10.5±9.0 0.156
CDAI (mean score) 188.3±117.1 126.8±93.3 0.064
Activity index (mean score) 114.1±37.8 111.8±25.8 0.876
Medications, n (%)
Steroids 9 (20) 3 (7) 0.123
Azathioprine/6-mercaptopurine 9 (20) 9 (20) 0.363
Methotrexate 1 (2) 1 (2) 0.689
5-Aminosalicylate 22 (50) 12 (27) 0.095
Antibiotics (chronic therapy) 3 (7) 3 (7) 0.539
Monoclonal antibody 3 (7) 4 (9) 0.360
Osteoporosis therapy 13 (29) 9 (20) 0.469
Alternative therapy 6 (14) 3 (7) 0.376
Comorbid illness 26 (59) 21 (47) 0.168
Missed medications 23 (52) 27 (60) 0.301
Education opportunities, n (%)
Study participation 16 (36) 22 (49) 0.164
Prior education program 6 (14) 8 (18) 0.404
Internet use 21 (47) 27 (60) 0.171
CCFC member 6 (14) 17 (38) 0.009
CCFC support group 9 (20) 11 (24) 0.422
CDAI Crohn’s Disease Activity Index; CCFC Crohn’s and Colitis Foundation
of Canada
Waters.qxd 3/24/2005 1:35 PM Page 238
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(KQ: t=3.78, P=0.000; CCKNOW: t=3.09, P=0.000); however,
the differences did not persist over time. Attendees of the
CCFCSG had higher scores at baseline (KQ: t=3.55, P=0.001;
CCKNOW: t=2.91, P=0.005), a difference that persisted over
the course of the study (KQ: F=3.55, P=0.048; CCKNOW:
F=6.62, P=0.005).
Perceived knowledge levels as assessed by VAS increased in
both groups at T2 and T3 (F=31.53, P=0.000), but were higher
for the education group (F=5.80, P=0.01) (Figure 3). Higher
perceived knowledge ratings were found for CCFC members
(t=4.01, P=0.000) and CCFCSG participants (t=2.08,
P=0.04), but the differences did not persist after the education
program.
QOL
The IBDQ has 32 questions in which patients rate their physi-
cal, social and emotional symptom experience over the previ-
ous two weeks on a scale of 1 to 7, with 1 meaning all of the
time and 7 meaning none of the time. Low scores indicate
more severe disease activity and/or higher emotional and social
dysfunction. No difference was found for IBDQ total scores
between groups at baseline, T2 or T3. Increased disease sever-
ity was associated with worse physical symptoms and greater
psychosocial dysfunction (P=0.01). The baseline mean IBDQ
scores of participants with quiescent Crohn’s disease was ele-
vated at 174.35 (range 97 to 211) and 186.76 (range 152 to
214) for those with ulcerative colitis. Those whose education
did not continue beyond junior high school had lower mean
baseline scores (F=6.67, P=0.000), a difference that persisted
over time (F=1.99, P=0.021). This group also had significantly
higher scores for bowel symptoms at baseline (F=3.51,
P=0.051) and over time (F=2.28, P=0.045). Higher perceived
knowledge ratings were associated with higher IBDQ scores
(P=0.05); however, higher knowledge scores were not.
The RFIPC asks patients to rate, on a scale of 0 to 100, the
degree of worry and concern they experience in relation to
25 specific questions that are divided into four indices: impact
of disease (13 questions); body stigma (two questions); sexual
intimacy (three questions); and complications (four ques-
tions). Additionally, concern about being treated differently,
Effects of formal IBD patient education
Can J Gastroenterol Vol 19 No 4 April 2005 239
4
6
8
10
T1 T2 T3
Control
group
Education
group
Perceived knowledge level
Figure 2) Comparison of mean total knowledge scores. CCKNOW
Crohn’s and Colitis Knowledge Questionnaire; CG Control group;
EG Education group; KQ Knowledge Questionnaire; T1 Baseline;
T2 Immediately posteducation; T3 Eight weeks posteducation
5
10
15
20
25
30
T1 T2 T3
EG
Scores
KQ
CG KQ
EG CCKNOW
CG CCKNOW
Figure 3) Comparison of perceived knowledge level. T1 Baseline;
T2 Immediately posteducation; T3 Eight weeks posteducation
TABLE 2
Comparison of mean knowledge scores
Control group (n=38) Education group (n=31)
T1 T2 T3 T1 T2 T3 P
Knowledge Questionnaire
Total correct (37)* 17.24±5.81 20.84±6.34 21.47±6.81 17.13±7.00 27.77±3.23 27.19±3.03 0.000
Diet (4) 1.61±0.97 2.16±1.13 2.34±2.58 1.68±1.35 2.81±1.05 2.71±1.04 0.380
A&P (3) 1.39±0.92 1.47±0.98 1.79±1.79 1.32±0.87 1.81±0.75 1.71±0.69 0.317
Disease knowledge (11) 5.76±2.59 6.50±2.55 6.79±2.56 5.52±1.98 9.00±1.37 8.68±1.28 0.000
Complications (10) 4.55±1.67 5.74±1.93 5.92±1.98 4.35±2.40 7.68±1.17 7.90±1.27 0.000
Medications (9) 3.92±2.14 4.97±2.24 4.92±2.48 4.26±2.27 6.48±1.65 6.23±1.38 0.050
CCKNOW
Total correct (24) 9.79±4.94 13.34±5.66 13.84±4.86 11.58±5.64 19.29±3.30 19.52±2.55 0.000
Diet (2) 1.34±0.67 1.42±0.72 1.66±0.58 1.23±0.72 1.90±0.30 1.94±0.25 0.001
A&P (5) 1.84±1.31 2.68±1.61 2.74±1.59 2.55±1.67 4.42±0.92 4.32±1.08 0.333
Complications (6) 2.32±1.56 3.32±1.69 3.39±1.35 2.84±1.83 4.58±1.29 4.90±0.94 0.013
Medications (5) 1.84±1.44 2.37±1.38 2.58±1.38 1.87±1.28 4.03±0.98 4.03±0.98 0.000
*Number of questions. A&P Gut anatomy and physiology; CCKNOW Crohn’s and Colitis Knowledge Questionnaire; T1 Baseline; T2 Immediately posteducation;
T3 Eight weeks posteducation
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Page 5
transmitting the disease to others and the ability to bear chil-
dren are assessed individually.
No differences were found between the education and con-
trol groups for mean total RFIPC scores over the course of the
study (F=1.27, P=0.285), nor were there differences for the
four index scores. A difference was found between groups for
concern about “being treated differently” (F=4.02, P=0.02).
Those with only junior high school-level education had
greater concern about the impact of disease (F=4.43, P=0.006),
body stigma (F=3.58, P=0.017), sexual intimacy (F=4.40,
P=0.006), being treated differently (F=5.81, P=0.001) and a
higher mean total score (F=4.70, P=0.004) at baseline, but
the differences did not persist over time. Perceived knowl-
edge levels and knowledge scores did not correlate with RFIPC
total mean scores.
Participants rated their health from poor (0) to excellent
(10) on the perceived health VAS. The mean baseline rating
for all participants was 6.18 (range 1.75 to 10) and improved
over the course of the study for both groups (F=7.94, P=0.001).
The education group had higher perceived health ratings at T2
and T3, but the difference did not reach statistical significance
(F=2.34, P=0.106). Although there was no relationship at
baseline, improved perceived health was associated with higher
perceived knowledge at T2 and T3 (P=0.01); however, no cor-
relation was found between perceived health and knowledge
scores. Those with higher perceived health ratings had less dys-
function on the IBDQ (P=0.01) and a lower rating for worries
and concerns on the RFIPC (P=0.01). High
Crohn’s Disease
Activity Index
scores correlated with lower perceived health
(P=0.05), but this was not a consistent finding with the
Activity Index (for ulcerative colitis). Those with Crohn’s dis-
ease had a lower perceived health status than those with ulcer-
ative colitis at baseline (t=2.36, P=0.021), but the difference
did not persist over time.
Medication adherence
Medication adherence was assessed by three methods: survey
at baseline; a set of questions on the Patient Satisfaction
Questionnaire; and participant self-report. During enrollment,
each participant was asked the question “Do you ever miss taking
your medications?” Forty-eight participants (54%) responded
in the affirmative. The Patient Satisfaction Questionnaire
asked participants to rate their agreement to questions about
making errors taking medications, missing scheduled medica-
tions and stopping medications independently due to side
effects. Fifty-four per cent of participants had scores above the
median, indicating that they experienced difficulty with med-
ication regimen adherence.
Over the course of the study, 72 participants maintained a
diary in which they recorded an entry for each instance of a
missed medication and the reason for the occurrence. A total
of 166 incidents of missed medications with a mean of
2.31 incidents per participant were reported. Although the
education group had a lower rate of missed medications
(M=0.91) than the control group (M=3.43), the difference did
not reach significance. The education group also demonstrated
a trend suggesting a lower rate of nonadherence over the three
months (T1: M=0.34; T2: M=0.32; T3: M=0.25). The four
most commonly cited reasons for missing medication was
“forgetting”, followed by “leaving medications at home”,
“prescription ran out” and “side effects”. Other reasons pro-
vided by participants included “missed meals, so did not take
medications” and “slept in”. Females missed taking medica-
tions more often than males (t=–1.89, P=0.036), attendees of
the CCFCSG demonstrated greater medication regimen
adherence (t=–1.29, P=0.018), and Internet users had a higher
rate of nonadherence than nonusers (t=2.04, P=0.048).
Health care use
Seventy-two participants maintained a record of physician vis-
its and hospital admissions related to IBD and the associated
complications. Forty-nine physician visits, 16 for symptom
assessment and 33 for follow-up, were reported. Participants ini-
tiated 18 of the visits, and the balance (n=31) were physician-
initiated. There were four emergency and five inpatient
admissions. Hospitals stays ranged from two to seven days for a
total of 25 inpatient days. Six of the admissions were for dis-
ease exacerbations; the rest were for IBD-related complications
(nephrolithiasis, fistulotomy and fistula). An audit of 13
(18%) of the records revealed 100% accuracy when compared
with physician and hospital health records.
Although the difference was not significant (t=1.06,
P=0.294), the education group had a lower rate of health care
use (M=0.63) than the control group (M=0.95). The differ-
ence may be attributed to the lower rate of physician visits of
the education group (M=0.53) than the control group
(M=0.80). Those who had attended a formal education pro-
gram before the study had significantly lower health care use
(t=–1.23, P=0.03). Higher disease severity scores correlated
with more frequent physician visits (P=0.05). Similarly, those
who reported missing medications in their diaries had a higher
rate of physician visits (P=0.01). Perceived health, perceived
knowledge, knowledge scores and QOL indices had no associ-
ation with health care use.
Participant satisfaction
Participant satisfaction with medical care and the education
program was assessed with questionnaires using a Likert scale
with 1 being “strongly agree” and 4 being “strongly disagree”.
Additionally, space for comments was provided for each ques-
tion. Satisfaction with medical care assessed the effectiveness
of education through information sharing (four items),
whether information needs were met (four items), the adequacy
of medication education (four items), and understanding of
provided information (two items). Several of the survey ques-
tions specifically addressed physician education of participants
within the context of the assigned categories. Separate analysis
of these items was included because doctors are primary care
providers and the most significant professional source of med-
ical information (four items).
The mean score for patient satisfaction with IBD medical
care was 41.31 (range 18 to 52). The mean satisfaction score
for physician education was 12.86 (range 4 to 16). Control
group total satisfaction scores were significantly lower for effec-
tiveness of education through information sharing (t=–3.51,
P=0.001), meeting information needs (t=–3.13, P=0.001), and
total satisfaction (t=–3.54, P=0.001) (Table 3). Higher satis-
faction scores correlated with higher perceived knowledge
(P=0.01), actual knowledge scores (P=0.01), higher IBDQ
scores (P=0.05) and lower RFIPC ratings (P=0.01).
Participant comments reflected a desire for more informa-
tion, the need for in-depth understandable literature, and
assistance in understanding written information. Ten partici-
pants in the control group indicated a lack of confidence in
Waters et al
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Page 6
their understanding of the disease and how to manage medica-
tions, symptoms and psychosocial effects. Comments also indi-
cated that health care providers were inconsistent in providing
medication education. Although there was some frustration
expressed with the lack of time for discussion during clinic vis-
its, participants provided favourable comments about the edu-
cation efforts of their physicians.
Evaluation of the education program focused on satisfaction
with improved disease understanding and the presentation
methods. The mean satisfaction score for the education pro-
gram was 49.97 (range 33 to 56). The mean score for improved
disease understanding was 31.44 (range 19 to 36) and the mean
score for program presentation was 18.81 (range 14 to 20).
Those with ulcerative colitis were significantly more satisfied
with the education program than those with Crohn’s disease
(t=2.34, P=0.005). Participant comments expressed general
satisfaction with the program, indicating an increased under-
standing of the disease and management, but some comments
indicated a need for more time and information on managing
the psychosocial aspects of the disease.
DISCUSSION
Patients’ desire for more information and having low knowl-
edge scores is well documented (20-31). The present study not
only underscored patients’ limited IBD knowledge and desire
for better education, but also identified the importance of edu-
cation that is flexible and easy to access. Barriers to access
included the distance from the centre where the education
program was provided, the timing of the classes, illness and
lack of transportation. When developing educational strategies
for patients with IBD, careful consideration should be given to
the potential barriers to access.
The significantly improved knowledge scores in the educa-
tion group clearly supports the value of formal education for
the IBD population and is in keeping with the reported bene-
fits of formal education for other chronic disease populations
(33-40). Further, the study supports the findings of Zernicke
and Henderson (54) that formal education is superior to
ad hoc patient teaching. Devine et al (36) reported a dimin-
ished effect size in knowledge levels over time in their meta-
analysis of educational interventions, and Eaden et al (22)
noted lower knowledge scores one month posteducation for
ulcerative colitis patients. Kennedy et al (44) found that
knowledge scores were similar nine months after providing an
education handbook. Similarly, in the present study, the poste-
ducation knowledge scores were unchanged over time and may
reflect the intensive, comprehensive nature of the education
program and availability of reference material. The previously
reported benefit of membership in lay IBD organizations in
enhancing patient knowledge was also evident, because those
with prior education had higher baseline knowledge scores
(22-23).
Although the education group had higher knowledge
scores, the control group also demonstrated improved knowl-
edge scores over the course of the study. This improvement
may have been due to some participants reading the provided
pamphlets, test familiarity or information seeking prompted by
the test questions. There was no difference between control
group readers and nonreaders. In a meta-analysis that included
assessment of education with pamphlets alone, Theis and
Johnson (55) reported only a small effect size. The small sam-
ple size of readers in this study may have been too small to
appreciate any improvement in knowledge scores. A second
consideration is the level of understanding of the provided
written material. Estey et al (56) noted that patient education
literature should be written at a grade 8 level or less to enhance
understanding. With the exception of a handout on medica-
tion management, the provided pamphlets were written at or
above a grade 10 level. Finally, the provided pamphlets are the
standard information given to all patients; these pamphlets
may have been previously read, thus limiting the learning of
new information.
The education program improved perceived knowledge
scores. Those with higher knowledge scores also rated their
knowledge levels higher. Moser et al (32) reported that those
with higher perceived knowledge had fewer worries and con-
cerns, but this was not the case in the present study. There was
no correlation between perceived knowledge levels and the
RFIPC; however, the sample size may have been insufficient to
demonstrate a difference. Higher perceived knowledge corre-
lated with higher IBDQ scores and greater patient satisfaction.
These findings suggest that having greater confidence in one’s
disease knowledge has some positive psychological benefits.
Meta-analyses of chronic disease educational interventions
have found small-to-moderate positive effect sizes on QOL
outcomes (33-40). This has not been demonstrated thus far in
the IBD population; however, Schreiber et al (42) noted an
improvement in a disease-time trade off test although there
was no change in QOL scores posteducation (42-46). No
improvement in QOL scores for the education group was found
on either the IBDQ or RFIPC. Increased anxiety after educa-
tion interventions of up to 20% of participants has been
reported (57,58). Verma et al (57) suggested that higher
knowledge levels may raise anxiety and have a deleterious
effect on QOL indices, but this study was limited by a cross-
sectional design and use of unvalidated instruments. Kennedy
et al (44) noted a trend to improved QOL scores nine months
posteducation and suggested that the study time frame was too
short to appreciate the full benefit of the intervention. The
effect of possible heightened anxiety from patient education
on QOL indices may be secondary to the immediacy of the
testing to the intervention. Examination of QOL indices more
remotely from the intervention may ameliorate any anxiety
effect and demonstrate the positive psychological benefits
reported elsewhere in the chronic disease literature. A further
consideration is that the small sample sizes in these studies are
inadequate to assess the multiple, complex interactive factors
that affect QOL assessment.
Participants with increased disease severity demonstrated
greater psychosocial dysfunction, supporting the well-established
association between disease severity and psychosocial dysfunc-
tion (6-7,16). A higher level of psychological dysfunction in
Effects of formal IBD patient education
Can J Gastroenterol Vol 19 No 4 April 2005 241
TABLE 3
Comparison of mean patient satisfaction scores with
mean medical care scores
Control group Education group
(n=38) (n=31) t P
Total satisfaction 38.60±8.63 44.81±5.76 –3.45 0.001
Disease understanding 11.55±2.51 13.48±2.00 –3.51 0.001
Information needs met 12.10±3.36 14.16±1.68 –3.13 0.001
Medication education 9.23±3.19 10.35±2.20 –1.68 0.097
Medication understanding 6.25±1.50 6.87±1.20 –1.88 0.064
Waters.qxd 3/24/2005 1:35 PM Page 241
Page 7
IBD patients in remission than in normal controls has been
reported (7,47). Likewise, in the present study, the mean
IBDQ scores of those with quiescent disease, although lower
than those with active disease, were indicative of some psy-
chological dysfunction.
Although the differences did not persist over time, those
whose education did not extend beyond junior high school had
significantly poorer RFIPC scores. Similarly, Drossman et al
(5) reported lower education levels correlated with higher anx-
iety levels. Those with lower education levels may have more
difficulty comprehending disease information and have less
well-developed coping skills, leading to greater anxiety. The
comprehensive IBD and self-management education provided
may have benefited those with lesser education by decreasing
their disease-related anxiety.
Perceived health did not improve with education. Disease
severity had a deleterious effect on perceived health status, and
Crohn’s disease patients, who had more severe disease overall,
had significantly lower ratings than those with ulcerative coli-
tis. Drossman et al (16) attributed disease severity as con-
tributing to a lower sense of well-being in Crohn’s disease
patients. Perceived heath ratings also correlated significantly
with IBDQ and RFIPC scores at all time points, with higher
perceived health status being associated with lower psycholog-
ical dysfunction. The consistent correlation of the VAS for
perceived health with the more complex QOL instrument raises
the possibility that it may prove to be a quick, efficient tool for
use in the clinical setting to help identify patients who are
experiencing psychosocial distress.
Response to the survey questions about nonadherence
revealed that over 50% of participants missed medications;
however, only 29% actually reported missing medications in
their diary. The difference in reporting may reflect the short
duration of the diary (the survey question covered a longer
timeline). In meta-analyses of education interventions,
improved medication adherence has been found (34-36,40).
Schreiber et al (42) found improved medication adherence in
a group of IBD patients provided education by CD-ROM.
Longer follow-up with a larger sample size may better demon-
strate the possible benefits of education to medication adher-
ence.
Analysis of demographic variables revealed that females
missed medications more often; however, the reasons for the
difference were not clear. Internet users also had a higher rate
of nonadherence. Dissatisfaction with current treatment
modalities may lead to lower medication adherence and the
search for alternative methods of managing the disease.
CCFCSG attendees had a significantly higher rate of adher-
ence, possibly reflecting a greater awareness of disease manage-
ment and the benefits of ongoing disease education that
membership provides.
Meta-analyses have demonstrated that education interven-
tions reduce health care use (38,60). Robinson et al (43)
reported decreased health care use in IBD patients who had
been educated in disease self-management. In this study, the
education group demonstrated a trend toward lower health
care use. Significantly lower use was found for those who had
received previous formal education, suggesting a long-term
benefit of education in reducing health care use. Medication
nonadherence was associated with higher health care use;
specifically, with more frequent physician visits. Therapeutic
management of IBD requires long-term maintenance therapy,
and lapses in medication adherence predispose patients to dis-
ease exacerbations and consequent need for physician follow-up.
Further, medication side effects leading to nonadherence may
contribute to increased physician visits.
Drossman et al (5,16) reported that poorer psychosocial
function, weight loss, and steroid use were associated with
greater health care use and that perceived well being was the
most significant factor affecting physicians visits. De Boer et al
(15) reported that disease activity, poor emotional function-
ing, impaired social function and disease burden were predic-
tive of increased health care use. In this study, only disease
severity correlated with increased health care use, specifically
physician visits.
In the present study, the health care satisfaction ratings
were relatively high for both groups; however, the education
group reported a significantly greater degree of satisfaction
with disease understanding, meeting of information needs, and
overall satisfaction. Comments provided by control group par-
ticipants on the Patient Satisfaction Survey indicated a lack of
confidence in disease management. Increased knowledge of
the disease and approach to medical management may con-
tribute to greater understanding of the prescribed therapeutic
regimen, help patients to identify concerns that need to be
addressed by medical staff, and provide a greater sense of con-
fidence when approaching health professionals.
Higher patient satisfaction with medical care was associated
with lower psychosocial dysfunction. Emotional and social dis-
tress related to the disease may contribute to an overall lower
level of satisfaction that is consequently reflected in the satis-
faction with medical care. Patient comments on the survey
indicated frustration with the lack of time to address concerns
with health care providers. Patient interactions with health
care professionals are often limited to short clinic visits that
tend to focus on physical symptoms and medical management.
Satisfaction with the education program was high.
Participants were very satisfied with their increased under-
standing of the disease and the program presentation methods.
Ulcerative colitis patients were more satisfied with the pro-
gram than those with Crohn’s disease. Most patient education
literature provides broad information about IBD, often focus-
ing more specifically on Crohn’s disease due to the complex
presentations of this disease entity. The education program
clearly delineated the differences in the disease presentations,
symptoms, medical management, and self-management
between Crohn’s disease and ulcerative colitis. Much of the
information provided may have been new to those with ulcer-
ative colitis, and the specific focus on their disease may have
resulted in a greater sense of satisfaction with the program.
Overall, participant comments on the education program
were positive. Several participants expressed a desire for more
information and time spent on the psychosocial aspects of the
disease. From the educator’s perspective, shorter classes over
six to eight weeks and a smaller class size would have facilitated
a more intimate sharing experience and may have been less
exhausting for participants.
CONCLUSION
The formal IBD patient education program improved knowl-
edge, perceived knowledge and patient satisfaction. Positive
trends toward greater medication adherence and lower health
care use were demonstrated. Comprehensive chronic disease
care includes a structured education component. The current
Waters et al
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Page 8
practice of relying on ad hoc, informal teaching during clinic
visits and reliance on written materials needs to be reviewed.
Innovative education programs that are flexible and accessi-
ble to those with IBD need to be developed. Further, pro-
grams should include a component of ongoing education.
Technology such as the Internet, teleconferencing or interac-
tive, computer-based education may provide an effective
means of facilitating ongoing education and overcoming
some of the barriers of time, geography, illness and trans-
portation.
Effects of formal IBD patient education
Can J Gastroenterol Vol 19 No 4 April 2005 243
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    • "In part, the solution to this problem identified by the patient in this study in items 1 and 2 above may lie in offering education to IBD patients as part of a mobile health application. Previous studies suggest that patient education improves patient satisfaction [17]. This could include physician-led videos explaining IBD conventional treatments as well as potential alternatives. "
    Full-text · Article · Jan 2016
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    • "Only where there are no differences found between the two disease groups is it then justified in analyzing them together as one IBD group. In the studies reviewed, only 6 of the 14 studies that combined these two populations report separate analyses (Borgaonkar et al., 2004; Mussel et al., 2003; Oxelmark et al., 2007; Schwarz & Blanchard, 1991; Smith et al., 2002; Waters et al., 2005). Of the two, better outcomes were found in the CD group (Schwarz & Blanchard, 1991; Smith et al., 2002), suggesting that with some interventions, patients in the two disease groups may respond differently. "
    [Show abstract] [Hide abstract] ABSTRACT: The purpose of this study was to examine self-management and educational interventions developed to support people with inflammatory bowel disease (IBD) and to identify which type of intervention seems to be most effective. The search was deliberately overinclusive to capture studies that evaluated educational and self-management interventions. The following databases were searched: MEDLINE, Embase, CINAHL, PsycINFO, the National Research Register, and Cochrane. Twenty-three studies were included. Thirteen of these were randomized controlled trials. The content of the interventions reviewed varied widely. As expected, it is the three studies that have explicitly labeled themselves as self-management interventions that have incorporated the greatest number of self-management techniques. Two of these studies reported the greatest number of improved outcomes in relation to symptom reporting, psychological well-being, and healthcare resource use. There is clearly a role for information in IBD, but this review supports research in other conditions that shows that education cannot be assumed to lead to improvements in health and well-being. Much of the research in this area focuses on education rather than self-management. Where self-management techniques have been applied, the findings tend to be more promising. Gastroenterology nurses (or in the United Kingdom, IBD specialist nurses) may be best placed to facilitate self-management in this group.
    Full-text · Article · Jan 2010 · Gastroenterology nursing: the official journal of the Society of Gastroenterology Nurses and Associates
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    • "Moreover, determining when QL is so severely affected that surgery has be resorted to is also difficult to establish given that each patient may have very different perceptions in terms of how his or her own QL has altered. An organisational change is needed, with the introduction of health education prog rammes for patients [60] , and dedicated units should be set up to provide comprehensive assistance [61] . This would improve the quality of healthcare assistance, while optimising healthcare resources [62] . "
    [Show abstract] [Hide abstract] ABSTRACT: The timing of the decision for operation in Crohn's disease is based on an evaluation of the several factors such as the failure of medical treatment, complications due to the Crohn's disease or to the pharmacological therapy, development of dysplasia or cancer and growth retardation. A complete evaluation of these factors should result in operation timed to the patient's best advantage, achieving maximal relief of symptoms with improvement of quality of life. Given the complexity and heterogeneity of the disease and the different options for treatment, is difficult to systematize when the optimal moment for the surgery is arrived. A very important factor in the management of Crohn's disease is the multidisciplinary approach and the patient preference should be a significant factor in determining the choice of therapy. The surgery should be considered such another option in the sequential treatment of Crohn's disease. We have analyzed the factors that are involved in the decision taking of the surgical treatment regarding to the experience and the published literature. When did the medical therapy fail? when is the appropriate moment to operate on the patient? Or which complications of Crohn's disease need surgery? These are some of the questions we will try to answer.
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