Research
into the Ulcerative Colitis
Health Management Guides
Use
of a guidebook to facilitate a patient-centred approach
to the management of Ulcerative Colitis
Many
patients with ulcerative colitis would like to take a greater
role in the management of their disease. This cannot happen
unless there is access to relevant, good quality and comprehensible
information. We have developed a guidebook in consultation
with patients which provides patient-centred, evidence based
information with which patients can make informed decisions
about their disease management in collaboration with clinicians.
The guidebook has been evaluated in a randomised-controlled
trial.
Six
local hospitals were randomised to intervention and control
sites. Forty patients with a clinical and histological diagnosis
of ulcerative colitis were recruited from each hospital.
Patients in the test sites were given the guidebook at the
beginning of the study. Questionnaire data were collected
at enrolment, one month and nine months to measure anxiety
(Hospital Anxiety and Depression Scale (HADS)), knowledge
of colitis, disease specific quality of life (Guyatt) and
perceptions of disease management. Open comments were invited
about the usefulness (or not) of the guidebook. GPs and
consultants were interviewed to assess their views of the
guidebook.
239
patients were recruited. The mean age was 46 years (16-83)
and there were 118 males (49%). All patients completed the
entry questionnaire, 220 (92%) completed the 1-month questionnaire
and 164 (69%) returned the 9-month questionnaire. 17 GPs
and six hospital specialists were interviewed.
Patients
receiving the guidebook knew more about ulcerative colitis
and had higher scores on the quality of life scale than
patients in the control group without an increase in anxiety
(see table 1).
What
patients liked about the guidebook
Patients
found the guidebook useful because it:
We recommend
that all patients with ulcerative colitis should have access
to information which facilitates informed decision-making
and promotes greater collaborative management between patients
and clinicians. Further studies are underway to evaluate
the effectiveness of this guidebook in combination with
personalised self-management training on clinical and psychological
outcomes.
Study
Team:
Dr
Anne Kennedy - NPCRDC Research Fellow
Dr
Andrew Robinson - Clinical Lecturer in Gastroenterology,
University of Manchester
Professor
David Thompson - Professor of Gastroenterology, University
of Manchester
Professor
David Wilkin - NPCRDC Professor of Health
Services Research
Address
for correspondence:
National Primary Care Research and Development Centre
5th Floor
Williamson Building
The University of Manchester
Manchester
M13 9PL
Telephone: 0161 275 7601
Fax: 0161 275 7600
Table
1 - Mean score
|
Outcome
|
Baseline
|
1
month
|
p
value
|
9
months
|
p
value
|
|
Anxiety
Range 0-42
|
Test
14
Control 14
|
13.3
13.7
|
0.780
|
12.3
13.8
|
0.26
|
|
Knowledge
Range 0-16
|
Test
6.58
Control 5.88
|
9.23
6.99
|
<0.001
|
9.54
6.92
|
<0.001
|
|
Quality
of life
Range 32-224
|
Test
166.4
Control 160.4
|
169.7
163.1
|
0.840
|
174.0
162.1
|
0.036
|
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