Transcript No Slide Title

Quality of Life in Childhood
Inflammatory Bowel Disease.
Adrian Thomas, Booth Hall Childrens Hospital
Manchester, UK
When I’m in remission I feel great and I think there is light
at the end of the tunnel but when I’m not in remission I feel
bad. I go very weak, lethargic & sick. I have bad tummy
pains & the runs. I feel that nobody cares how I feel, the
only people who understand me are my family, they support
me through my bad days and encourage me to get well. I
wish I knew more people with this illness, I feel that I’m on
my own.
Age 10
Health
“a state of complete physical, mental and
social wellbeing and not merely the absence
of disease or infirmity”
World Health Organisation
What is meant by quality of life?

Encompasses not only physical and mental health
but also the impact of the environment

May be affected by personality, education, culture,
financial factors, community & family life

No universally accepted definition of QOL but
should take into account subjective as well as
objective perception of circumstances of life
Health related quality of life
“the functional effect of an illness and its
treatment on a patient, as perceived by the
patient”
Schipper H et al 1990
Measures of health related quality of life
Emphasise patients self-assessment which may differ
substantially from that of healthcare professionals
Give a broader picture of health than disease parameters
alone and should encompass:
 issues directly related to disease (eg. symptoms) and
 issues which are independent of disease but may be
affected by it (attitudes, emotional state, personality)
Should help to assess healthcare outcomes more fully
Measures of health related quality of life
Generic
can compare QOL in children with IBD to normal
children and children with other conditions
 may be too imprecise to reflect impaired function in IBD
or to guage response to therapy

Disease specific

more sensitive to specific problems of children with IBD
Domains
Physical function
Emotional/psychological
Social (family, friends, school)
Cognitive function (school performance)
Symptoms (pain, bowel function, energy)
Treatment (response & side effects)
Body image
Overall health
Potential uses of HRQOL instruments
To assess individual patients or groups
To monitor treatment in clinical setting
To detect psychological disturbances
To measure outcome in clinical trials
To estimate/compare burden of the disease
To identify patients needs
To decide priorities in resource allocation
HRQOL in children
 Physical,
intellectual & emotional function
constantly changing with normal development
 Changing perception of health
 Children more concerned about symptoms
 Parents more concerned about long term
consequences and side effects of treatment
Impact of chronic disease in children

10% of children have a chronic physical illness

Behavioural problems, social isolation &
psychological disturbance common in adolescents

May be special educational needs

Effects on parents & siblings
Psychiatric aspects of childhood IBD

In meta-analysis of chronic diseases IBD had most
profound effect on mental health

Steinhausen - 56% IBD children cf. 18% of controls
had psychiatric disorder (emotional)

Engstrom - psychiatric disorder in 60% with IBD, 30%
with tension headaches, 20% with diabetes & 15% of
healthy controls

Others - depressive disorders, lower self esteem,
behavioural problems, obsessive-compulsive disorders
common
HRQOL in children with IBD
Focus groups

Initial denial of effect of CD on QOL

All felt angry, frustrated, fed up &/or worried

Frustration and anger about: symptoms, lack of
understanding, investigations, hospitalisation, side
effects of treatment & body image
Quality of life in childhood Crohns disease
Rabbett H et al, J Pediatr Gastroenterol Nutr 1996;23:528-33

QOL assessed by questionnaire in 16 children

School absence problem in 12 & distraction in 6

Problems with sports in 8, 3 missed > 1 year

Problems also with holidays & staying at friends
Quality of life in childhood Crohns disease
Rabbett H et al, J Pediatr Gastroenterol Nutr 1996;23:528-33

Children on steroids had more depressive symptoms with
some even wishing they were dead

Children more concerned about symptoms

Parents more concerned about long term consequences and
side effects of treatment
A review of measures of quality of life for
children with chronic illness
Eiser C, Morse R. Arch Dis Child 2001;84:205-11
Aim: to identify available measures of QoL in children
19 generic & 24 disease specific measures identified,
almost half developed in USA & many had problems:
- limited availability of disease specific measures
- discrepancy between child & parent ratings
- lack of measures for self completion by children
- lack of precision regarding domains of QoL
- cultural appropriateness of measures developed elsewhere
for children in UK
Development of a quality of life index for pediatric
IBD: dealing with differences related to age & IBD type
Griffiths AM et al. J Pediatr Gastroenterol Nutr 1999;28:S46-S52
Interviews held with 82 Canadian children aged 8-17 years
with IBD (61 CD, 21 UC)
 Important issues incorporated into 96 item reduction
questionnaire
 117 different children with IBD scored each item for
importance & frequency on visual analogue scale
 Items ranked according to sum of scores, 33 item IMPACT
questionnaire developed from 50 top ranking items

Top ranking items on IMPACT
Worried about possibility of a flare-up
Worried/upset that IBD is lifelong
Feeling that its unfair to have IBD
Concerned about weight
Concerned/upset about looks
Worried about needing surgery
Stomach pains
Worried about future health problems
Angry about having IBD
A cross-cultural comparison of quality of life
in children with inflammatory bowel disease
Richardson G et al. J Pediatr Gastroenterol Nutr 2001;32:573-8
Aim: To determine whether IMPACT is suitable to measure
HRQOL in UK children with inflammatory bowel disease
Methods: The 96 item reduction questionnaire was scored by
53 children with IBD in the same way as in Canada
Results: Close correlation between ranks & only 2 items
ranked highly in UK not included in IMPACT. 91/96 items
scored more highly (worse QOL) in UK than Canada
Simplification of IMPACT
Some questions/responses in IMPACT were felt to
be too complicated or upsetting, they’ve been
simplified and made more child-friendly, new
version called IMPACT-II
Original IMPACT
Question 5: Your doctor and nurse have told you that
medicines and other treatments are used to keep your
bowel condition under control, but not actually cure
it. Put a mark on the line to show how you feel about
this
__________________________
A
B
IBD is going to be with me all
my life; its horrible having
something thats lifelong. I can’t
stop thinking about that
I know that my bowel condition
can’t be cured now but I never
worry about that. I’m hopeful
research will find a cure one day
IMPACT-II
Question 5: How much does it bother you that you have
an illness that does not just go away?
Not at all __________________________ Very much
Simplification of IMPACT
21 UK children (10-17 yrs) with IBD completed
(random order) both versions of IMPACT
 16 preferred IMPACT-II, 2 preferred IMPACT &
3 had no preference, commonest reason was:
“easier to understand”
 Mean time to complete: IMPACT 13.6 min,
IMPACT-II 9.7 min, p<0.05. Mean QoL scores:
IMPACT 137, IMPACT-II 132 p=ns.

Likert or Visual Analogue Scale?
The Visual Analogue Scale (VAS)

Here is an example question from the adapted
questionnaire using the VAS.
Question 12: How often do you think it is unfair that you
have inflammatory bowel disease?
Never__________________________ Very often
The Likert Scale

Here is the same question again with the answers
given with the different format.
Question 12: How often do you think it is unfair you have
inflammatory bowel disease?
Never
Rarely
Sometimes
Often Very often
Likert or Visual Analogue Scale?
1) To determine which response scale was preferred
by children with IBD
2) To check that the two response scales collected
similar results
Methods

20 children with IBD between the ages of 8-16 were asked
to fill in two versions of IMPACT

The VAS and Likert questionnaires were distributed in
random order

The children were asked to comment on their preferred
response scales and asked to give reasons for their decision

Four children took part in cognitive interviews requiring
them to ‘think out aloud’ when completing one of the
questionnaires
Results of the study.
Graph showing preference of
response scale


80
70
60

50
40
30
20

10
0
Total
Response Scale Preferred.
Likert
VAS
75% preferred the Likert scale
(p<0.01)
Main reason given was that it
was easier to understand
Children didn’t know where to
place their ‘X’ on the VAS and
felt it didn’t reflect their
answer
VAS supporters though it was
more accurate
Results cont...
90
80
70
60
50
40
30
20
10
0
Likert
VAS

This suggests that 8-12 year
olds prefer the Likert scale to a
greater degree than the older
age group

87.5% (7 out of 8) of 8-12 year
olds prefer Likert
66.6% (8 out of 12) of 13-16
year olds prefer Likert

8-12 yr 13-16 yr
olds
olds
Graph Showing Mean Scores from
the two Questionnaires
35

30
25
20
Likert
VAS
15

10
5

0
Total
8-12years
13-16years

Second aim was to check
scores between different
response scales were
comparable
After translating scores (scale
ranged 0-100, 0 being best and
100 being the worst possible
quality of life) there was no
significant difference
Likert = Mean score 27.1
VAS = Mean score 26.3
Conclusions
Childhood Crohn’s disease and its treatment have a
great impact on QOL
 Future studies of treatment should include
consideration of effects on QOL
 The simplified questionnaire (IMPACT-II) was
preferred by children with IBD and gave similar results
 The Likert scale (IMPACT-III) was preferred to the
VAS and also appeared to give similar results
 Further validation is required
