Identifying predictors of low health-related quality of life among patients with inflammatory bowel disease: comparison between Crohn’s disease and ulcerative colitis with disease

CLINICAL ISSUES

Identifying predictors of low health-related quality of life among

patients with inflammatory bowel disease: comparison between

Crohn’s disease and ulcerative colitis with disease duration

Susanna Jaghult, Fredrik Saboonchi, Unn-Britt Johansson, Regina Wredling and Marjo Kapraali

Aim. To identify predictors of low health-related quality of life among patients with inflammatory bowel disease and make a

comparison between Crohn’s disease and ulcerative colitis with disease duration.

Background. Studies have shown that patients with inflammatory bowel disease rate their health-related quality of life lower,

as compared with a general population.

Design. Survey.

Methods. In this study, 197 patients in remission were included and divided into a Crohn’s disease group and an ulcerative

colitis group. Each group was also divided into separate groups whether the patients had short disease duration or long disease

duration. Generic instruments, combined with disease-specific questionnaires, were used for measuring health-related quality of

life.

Results. The analysis showed a non-significant effect for diagnosis, but a significant effect for disease duration showing that the

patients with short disease duration had lower scores of health-related quality of life compared with patients with long disease

duration. A significant interaction between diagnosis and disease duration was also revealed.

Conclusion. Patients with longer disease duration experienced a better health-related quality of life than patients with short

disease duration. Patients with Crohn’s disease and short disease duration have the lowest health-related quality of life and are

in greatest need of education and support.

Relevance to clinical practice. It is important to identify which patients’ are in the greatest need of education and support.

Key words: Crohn’s disease, health-related quality of life, inflammatory bowel disease, nursing, ulcerative colitis

Accepted for publication: 31 August 2010

Introduction

Inflammatory bowel diseases (IBD), including Crohn’s disease

(CD) and ulcerative colitis (UC), are chronic diseases, char-

acterised by alternating periods of remission with relapses

(Farrokhyar et al. 2001). Common symptoms are rectal

bleeding, abdominal pain and diarrhoea (Farrokhyar et al.

2001). The aetiology is still unknown but is believed to be

Authors: Susanna Jaghult, RN, PhD Student, Division of Medicine,

Department of Clinical Sciences, Karolinska Institutet, Danderyd

Hospital, Stockholm; Fredrik Saboonchi, PhD, Senior Lecturer,

Division of Medicine, Department of Clinical Sciences, Karolinska

Institutet, Danderyd Hospital, Stockholm and Sophiahemmet

University College, Stockholm; Unn-Britt Johansson, PhD, RN,

Registered Nurse, Division of Medicine, Department of Clinical

Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm and

Sophiahemmet University College, Stockholm; Regina Wredling,

RN, Professor, Division of Medicine, Department of Clinical

Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm and

Sophiahemmet University College, Stockholm; Marjo Kapraali,

PhD, MD, Doctor, Division of Medicine, Department of Clinical

Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm,

Sweden

Correspondence: Susanna Jaghult, PhD Student, Division of

Medicine, Department of Clinical Sciences, Karolinska Institutet,

Danderyd Hospital, SE-182 88 Stockholm, Sweden. Telephone:

+46(0)8 655 79 91.

E-mail: [email protected]

1578 � 2011 Blackwell Publishing Ltd, Journal of Clinical Nursing, 20, 1578–1587

doi: 10.1111/j.1365-2702.2010.03614.x

multifactorial, involving both environmental and genetic

factors (Farrokhyar et al. 2001, Timmer 2003, Korzenik

2005, Bernstein et al. 2006, Halfvarson et al. 2006, Baumgart

& Carding 2007). Smoking is presently the only known

environmental risk factor for IBD (Timmer 2003, Loftus

2004, Bernstein et al. 2006, Halfvarson et al. 2006, Baumgart

& Carding 2007). Both CD and UC have a peak onset in late

adolescence or early adulthood (Farrokhyar et al. 2001). The

highest incidence rates and prevalence for IBD have been

reported from northern Europe, the UK and North America

(Farrokhyar et al. 2001, Baumgart & Carding 2007) and the

diseases appear to be less common in central and southern

Europe, Asia and Africa (Farrokhyar et al. 2001).

Studies have shown that patients with IBD rate their

health-related quality of life (HRQOL) lower, as compared

with a general population (Hjortswang et al. 2003, Bernklev

et al. 2004, Casellas et al. 2005, Pizzi et al. 2006). HRQOL

is determined by the patient’s physical, psychological and

social status, as well as attitudes, concerns and behaviours in

response to the disease (Drossman et al. 1989). Disease

activity is one of the most important factors for decreased

HRQOL (Bernklev et al. 2004, Casellas et al. 2005, Han

et al. 2005, Canavan et al. 2006, Pizzi et al. 2006, Larsson

et al. 2008). Several studies have investigated whether there

are any differences in HRQOL between patients with CD and

UC. Some studies have shown that patients with CD have

lower HRQOL compared with patients with UC (Bernklev

et al. 2004, Rubin et al. 2004, Larsson et al. 2008), but other

studies have shown no difference (Casellas et al. 2002, 2005,

Mussell et al. 2004).

Few studies have investigated whether disease duration

leads to changes in patients’ HRQOL and those that have

been conducted are also contradictory. Some studies have

found that longer disease duration is associated with better

HRQOL (Casellas et al. 2002, 2005, Han et al. 2005).

However, one study showed that there was no difference in

HRQOL between newly diagnosed and established patients

with CD (Canavan et al. 2006). Another study compared the

HRQOL of IBD patients during their first relapse, with

patients who had had at least three previous relapses

(Casellas et al. 2003). The results showed that IBD patients’

HRQOL is similar in the first relapse and recurrent relapses.

There seems to be a tendency for higher activity in the first

course of the IBD diseases and then a decrease in symptoms

over time (Munkholm et al. 1995, Henriksen et al. 2006,

Wolters et al. 2006). More information is needed regarding

HRQOL in relation to disease duration, among patients with

IBD. The incidence of CD and UC has increased (Tysk &

Jarnerot 1992, Loftus 2004, Lapidus 2006) and due to more

patients there is a need of further information regarding

HRQOL. Which patients are in the greatest need of educa-

tion and support?

The hypothesis in this study is that the disease duration has

an impact on the patients’ HRQOL. Furthermore, it is also

hypothesised that HRQOL varies between IBD patients with

different diagnoses (i.e. CD and UC). The aim of this study is

to identify predictors of low HRQOL among patients with

IBD and make a comparison between Crohn’s disease and

ulcerative colitis with disease duration.

Methods

Patients

Patients with a confirmed diagnosis of CD or UC, who were

in clinical remission and receiving care at the IBD clinic at

Danderyd Hospital, were invited to participate in this cross-

sectional study. The patient inclusion criteria were: disease

duration of less than two years (short-duration group) or

more than five years (long-duration group), no other chronic

disease, a good understanding of the Swedish language and

ability to complete a questionnaire. Clinical remission was

defined as having no bowel symptoms associated with active

disease, i.e., no diarrhoea or blood in stools and receiving no

acute treatment. UC patients were to have a UC-DAI score of

£ 2 (Bibiloni et al. 2005) and CD patients were to have a

Harvey–Bradshaw Index score of <5 (Best 2006). Of the

enrolled patients at the IBD clinic, a total of 319 matched the

inclusion criteria. These patients were sent a letter, including

four questionnaires (described below) to measure HRQOL

and written information about the aim of the study. One

reminder was sent to non-respondents after six weeks. In all,

197 patients (61%) returned the questionnaires. The study

population was divided into a CD group and a UC group. In

the CD group, disease duration was less than two years for

44 patients and longer than five years for 39 patients. In the

UC group, disease duration was less than two years for 40

patients and more than five years for 74 patients. According

to previous studies (Munkholm et al. 1995, Henriksen et al.

2006, Wolters et al. 2006), disease duration of more than

five years was chosen as an inclusion criterion for the long-

duration groups, due to the fact that the most common course

of IBD seems to be a decrease in symptoms over time.

Instruments

In this study, standardised instruments were used to test the

hypothesis. Generic instruments, combined with disease-

specific questionnaires, were chosen to describe and measure

HRQOL in patients with IBD. The generic instruments focus

Clinical issues HRQOL in inflammatory bowel disease

� 2011 Blackwell Publishing Ltd, Journal of Clinical Nursing, 20, 1578–1587 1579

on physical symptoms but may not detect small clinical

changes in specific disease conditions or patient populations,

as the disease-specific instruments do. One questionnaire, the

Sense of Coherence, measuring coping capacity for life

stressors was also used. The rationale for using this ques-

tionnaire is based on an increased interest in the phenomenon

of coping related to stress and the way this is related to illness

and health. The background data collected from computer-

ised medical records included age, sex, family situation,

smoking status, disease duration, education, number of

relapses, localisation of the disease, operation, fistulas and

stenosis.

The Health Index (HI) questionnaire contains nine ques-

tions that describe patients’ general health (Nordstrom et al.

1992). Each question is graded: 1 = very poor, 2 = rather

poor, 3 = rather good, 4 = very good. The total score ranges

from 9 (very poor health) to 36 (very good health). The

questionnaire includes questions regarding energy, temper,

fatigue, loneliness, sleep, vertigo, bowel function, pain and

mobility. The internal consistency, Cronbach’s alpha coeffi-

cient, in the present study was 0Æ82.

The short form of the Sense of Coherence (SOC) question-

naire was used (Antonovsky 1993) to measure coping

capacity for life stressors. There are indications that the

concept of SOC influences our general sense of well-being

and adaptation to illness; therefore, a person with a strong

SOC might have a better ability to handle stress-related

situations. The questionnaire has been used in previous

studies concerning HRQOL in patients with IBD (Oxelmark

et al. 2007). The questionnaire consists of 13 questions, each

question with a scale graded from 1–7 (with diametrically

opposite endpoints). Possible scores range from 13–91.

A high score indicates a strong sense of coherence. The

SOC scale has been shown to have adequate reliability and

validity in Sweden (Langius et al. 1992, Eriksson & Lind-

strom 2005). The internal consistency, Cronbach’s alpha

coefficient, in this study was 0Æ86.

The disease-specific symptom scale, Inflammatory Bowel

Disease Questionnaire (IBDQ) is used for assessing HRQOL

for patients with IBD. The questionnaire has 32 items,

divided into four subscales, assessing bowel symptoms (bowel

movements and abdominal pain), systemic symptoms (fatigue

and sleep), emotional function (irritation, depression and

aggression) and social function (ability to work and partic-

ipate in social activities). The questionnaire has been shown

to be a reliable and sensitive measure of HRQOL (Irvine

1999) and has been validated in Sweden (Hjortswang et al.

2001, Stjernman et al. 2006). In this study we used the

response option that is used in the UK version of the IBDQ

since it is more differentiated (Cheung et al. 2000). In this

version, a four-graded Likert scale is used instead of the

seven-graded Likert scale that was developed by Guyatt et al.

(1989). Score 1 represents the ‘best function’ and score 4

represents the ‘worst function’. We have used all 32 items

(Guyatt et al. 1989) and the total score ranges from 32

(optimal HRQOL) – 128 (worst HRQOL). The modified

version of the IBDQ was tested for reliability and validity in a

previous study (Jaghult et al. 2007) by using Cronbach’s

alpha coefficient and Rasch analysis (Conrad & Smith 2004).

Cronbach’s alpha coefficient showed high internal consis-

tency for the total score, 0Æ90. The four subscales also showed

high internal consistency: bowel symptoms 0Æ84, systemic

symptoms 0Æ79, social function 0Æ66 and emotional function

0Æ88. The Rasch analysis showed that the questionnaire had a

unidimensional construct, 79Æ2% and showed good person

separation, 2Æ69 (reliability 0Æ88) and good item separation,

4Æ27 (reliability 0Æ95). The internal consistency, Cronbach’s

alpha coefficient, in this study was 0Æ93.

The Rating Form of IBD Patient Concerns (RFIPC) is a

disease-specific questionnaire that rates important worries

and concerns of patients with IBD. It consists of 25 items or

concerns that are graded on 100-mm visual analogue scales,

where the extremes are 0 mm = ‘not at all’ and 100 mm = ‘a

great deal’. The basic formulation is ‘Because of your

condition, how concerned are you with …?’ The items or

concerns are, e.g. ‘having surgery’ and ‘feeling alone’. In the

original version, a mean is reported for each item, as well as

the sum score, which is the mean of the 25 items (Drossman

et al. 1989). The questionnaire has been shown to be a

reliable and sensitive measure of HRQOL (Drossman et al.

1991) and it has been validated among Swedish patients

(Hjortswang et al. 1997). The internal consistency, Cron-

bach’s alpha coefficient, in this study was 0Æ96.

Statistical analysis

The chi-squared test and the t-test, were performed, when

applicable, to compare participants with non-participants

with regard to age, disease duration, sex and for comparison

of the descriptive data between the short-duration groups and

the long-duration groups of participants. Correlation be-

tween variables was calculated using Pearson’s correlation

coefficient. Second-order factor analysis was performed.

Multivariate analyses of covariance (MANCOVAMANCOVA) were used

to examine the impact of diagnosis and disease duration.

Box’s test was performed to ensure the equality of variance

matrix. In the initial screening of the data, a departure from

normality was detected for number of relapses, this variable

was consequently natural log-transformed before being

entered in the analysis. A probability value of <0Æ05 was

S Jaghult et al.


considered as statistically significant. Missing values are

accounted for by using mean substitution procedure. Mean

substitution replaces the missing values for a variable with

the mean value of that variable, calculated from all valid

responses (Hair et al. 2006). The data were analysed using

the statistical program Statistical Package for Social Sciences

software (SPSSSPSS) 17Æ0 for Windows (SPSS Inc., Chicago, IL,

USA).

Ethical considerations

The study was approved by the local Ethics Committee,

Karolinska Institutet, Dnr. 01-224. All data were handled

anonymously. Participation was voluntary and the patients

could withdraw from the study at any time.

Results

No significant differences were found in this study, either

between UC non-participants (n = 86) and participants

(n = 114) or between CD non-participants (n = 36) and

participants (n = 83), regarding sex, age or disease duration.

Demographic and disease-related factors among participants

in the study are shown in Table 1. As expected, disease

duration was significantly longer for patients in the long-

duration groups than for those in the short-duration groups.

Patients in the long-duration groups also had a significantly

larger number of relapses compared with patients in the

short-duration groups. UC patients were significantly older in

the long-duration group compared with the short-duration

group. There were no other differences between the groups

regarding demographic and disease-related factors.

Significant correlations were found for both CD patients

and UC patients between the HI, the IBDQ and the RFIPC

(Table 2). Based on substantial intercorrelation between the

measures, it was hypothesised that the measures could be

treated in a multivariate analysis reflecting health-related

quality of life. A second-order factor analysis was conducted,

using the HI, the four subscales of the IBDQ and the RFIPC.

This analysis produced a single factor with an eigen value of

>1, reflecting different dimensions of overall health-related

quality of life, which explained 67% of the total variance.

The loading of the measures ranked from 0Æ69 to 0Æ91.

The measures included in this factor were then entered into

a 2 · 2 multivariate analysis of covariance (MANCOVAMANCOVA) with

SOC and natural log-transformed number of relapses as

covariates. The analysis showed a non-significant effect for

diagnosis (Wilks’ Lambda = 0Æ964, F [3, 184] = 2Æ32,

p = 0Æ08), but a significant effect for disease duration (Wilks’

Lambda = 0Æ902, F [3, 184] = 6Æ66, p < 0Æ001), showing

that the patients with short disease duration had lower scores

of HRQOL compared with patients with long disease

duration. The results of the analysis also revealed a significant

interaction between diagnosis and disease duration (Wilks’

Lambda = 0Æ914, F [3, 184] = 5Æ77, p = 0Æ001). Descriptive

statistics are shown in Table 3. The results of the univariate

follow-up analysis of the effects of disease duration and the

interaction between duration and diagnosis on HRQOL are

displayed in Table 4. Significantly higher scores on the HI

and lower scores on the IBDQ and the RFIPC were shown for

the longer duration group compared with the short-duration

group. The interaction effect of disease duration and

diagnosis was significant on the HI and the IBDQ, but was

non-significant on the RFIPC. The post hoc analysis revealed

significantly lower scores on the HI and higher scores on the

IBDQ for CD patients with short disease duration than for

the other three groups (Fig. 1).

Discussion

This study shows that patients with longer disease duration

experience better HRQOL compared with patients with short

disease duration. There were no significant differences

between patients with UC and patients with CD, but the

interaction between diagnosis and disease duration showed a

significant effect, indicating that patients with CD and a short

disease duration have the lowest HRQOL.

This result contradicts results from another study, where

no differences were found in HRQOL between newly

diagnosed and established patients (Canavan et al. 2006).

The study compared patients diagnosed less than 10 years

ago with patients diagnosed more than 20 years ago, which

may explain the contradictory findings, as patients in the

long-duration group in this study were equivalent to the

newly diagnosed group in their study.

Patients feel that the disease is less of a burden over time

and their HRQOL improves. The interaction found in this

study suggests that this increase in HRQOL over time is more

pronounced in patients with CD. The diseases seem to have

higher activity in the first course of the disease (Munkholm

et al. 1995, Henriksen et al. 2006, Wolters et al. 2006) and

disease activity is one of the most important factors for

decreased HRQOL (Bernklev et al. 2004, Casellas et al.

2005, Han et al. 2005, Canavan et al. 2006, Pizzi et al. 2006,

Larsson et al. 2008). This could be the reason for the

improved HRQOL in patients with longer disease duration.

The results could also indicate that medical care functions

well and that patients feel safer and more secure over time.

Non-adherence to therapy is a common problem in IBD.

Patients with short disease duration display worse adherence



Table

1D

emogra

phic

and

dis

ease

-rel

ate

dfa

ctors

.C

om

pari

son

bet

wee

nth

esh

ort

-dura

tion

gro

up

and

the

long-

dura

tion

gro

up

inpati

ents

wit

hC

rohn’s

dis

ease

(CD

)and

ulc

erati

ve

coliti

s

(UC

),re

spec

tivel

y

CD

CD

p-v

alu

e

UC

UC

p-v

alu

e

Short

-dura

tion

gro

up

Long-d

ura

tion

gro

up

Short

-dura

tion

gro

up

Long-d

ura

tion

gro

up

n=

44

n=

39

n=

40

n=

74

Age,

mea

n,±

SD

,(r

ange)

41Æ8

±15Æ1

0(1

9–73)

45Æ7

±11Æ9

9(2

4–73)

0Æ2

06

39Æ8

±16Æ2

8(1

7–75)

48Æ3

±12Æ0

5(2

2–73)

0Æ0

02

Male

/fem

ale

(n)

19/2

517/2

20Æ9

70

22/1

839/3

50Æ8

14

Fam

ily

situ

ati

on:

spouse

/sin

gle

(n)

31/1

329/1

00Æ6

92

27/1

157/1

70Æ4

89

Sm

okin

g:

smoker

/ex-s

moker

/nev

ersm

oked

(n)

14/1

3/1

75/1

6/1

80Æ1

16

6/2

3/1

110/3

1/3

30Æ1

88

Dis

ease

dura

tion,

mea

nyea

rs,±

SD

(range

)1Æ7

±0Æ4

8(1

–2)

14Æ3

±4Æ9

6(7

–23)

<0Æ0

01

1Æ5

±0Æ5

0(1

–2)

12Æ5

±5Æ1

3(5

–23)

<0Æ0

01

Educa

tion:

less

than

12

yea

rs/m

ore

than

12

yea

rs(n

)6/3

87/3

20Æ5

90

5/3

511/6

30Æ7

29

Num

ber

of

rela

pse

s,m

ean,±

SD

(range

)1Æ6

±0Æ8

1(1

–4)

5Æ0

±4Æ7

6(1

–30)

<0Æ0

01

2Æ2

±1Æ1

0(1

–4)

3Æ7

±2Æ5

8(1

–12)

0Æ0

02

Loca

lisa

tion

of

the

dis

ease

(%)

Pro

ctit

is–

–25

10

Pro

ctosi

gm

oid

itis

––

33

46

Exte

nsi

ve

coli

tis

––

42

44

Colo

n57

59

––

Colo

nand

small

inte

stin

e22

26

––

Sm

all

inte

stin

e21

15

––

Surg

ery

(%)

No

surg

ery

84

67

98

88

Cole

ctom

y0

52

12

Colo

nre

sect

ion

10

8–

–

Sm

all

inte

stin

al

rese

ctio

n2

5–

–

Ileo

caec

al

rese

ctio

n4

15

––

Fis

tula

sor

absc

esse

s(%

)14

10

00

Ste

nosi

s(%

)20

18

21

Sig

nifi

cant

p-v

alu

esare

pri

nte

din

bold

face

.

Chi-

square

dte

stand

t-te

stare

use

dw

hen

applica

ble

.

S Jaghult et al.


than patients with a longer standing disease (Lakatos 2009).

Poor treatment adherence may result in more frequent

relapses and a disabling disease course. Non-adherences

increase when patients are both <40 years and have short

disease duration (Lakatos 2009).

In this study no significant difference could be found

between CD patients and UC patients when only diagnosis

was considered. This correlates with earlier studies (Mussell

et al. 2004, Casellas et al. 2005, Pizzi et al. 2006). Longer

disease duration seems to be associated with better HRQOL.

Casellas et al. found no differences between CD and UC, but

patients with longer disease duration rated better HRQOL

(Casellas et al. 2005). Previous studies have also shown that

patients with UC reported better general psychological well-

being and lower levels of anxiety and depression than

patients with CD (Simren et al. 2002), but that with long-

standing remission the levels of both groups were comparable

to those of the general population. In this study it is clear that

the patients with CD and short disease duration have the

lowest scores of HRQOL. This corresponds well with earlier

studies where CD patients reported more impaired HRQOL,

general well being and more psychological distress than

patients with UC (Nordin et al. 2002, Larsson et al. 2008).

Another consideration relating to the HRQOL of patients

is the question of the importance of patient education

Table 2 Correlations using Pearson’s correlation coefficient

describing patients with Crohn’s disease (CD) and patients with

ulcerative colitis (UC), respectively

Health Index IBDQ RFIPC

CD UC CD UC CD UC

Health Index 1Æ00 1Æ00

IBDQ �0Æ86* �0Æ69* 1Æ00 1Æ00

RFIPC �0Æ66* �0Æ49* 0Æ71* 0Æ54* 1Æ00 1Æ00

*p < 0Æ01.

Table 3 Descriptive statistics, showing the mean values of the measures for the short-duration group and the long-duration group in patients

with Crohn’s disease (CD) and ulcerative colitis (UC), respectively

Possible

score

CD CD UC UC

Short-duration group Long-duration group Short-duration group Long-duration group

n = 44 n = 39 n = 40 n = 74

Mean (SD) Mean (SD) Mean (SD) Mean (SD)

Health Index 9–36 25Æ07 (4Æ687) 28Æ72 (4Æ668) 28Æ08 (3Æ206) 28Æ11 (3Æ466)

Sense of coherence 13–91 63Æ07 (12Æ365) 67Æ92 (12Æ664) 62Æ45 (11Æ985) 68Æ22 (11Æ550)

IBDQ Total sum 32–128 61Æ00 (15Æ230) 51Æ28 (15Æ668) 53Æ38 (12Æ072) 49Æ85 (12Æ266)

RFIPC* 0–100 38Æ94 27Æ04 31Æ80 22Æ24

*Mean sum score.

Table 4 Adjusted descriptive data and results of the follow-up uni-

variate analysis of variance on measures of HRQOL in patients with

Crohn’s disease (CD) and ulcerative colitis (UC). Diagnosis is not

included in the follow-up analysis due to the non-significant multi-

variate effect

Health Index z-score F

Disease duration

Short duration �0Æ17 8Æ00**

Long duration 0Æ21

Diagnosis · disease duration

CD – Short duration �0Æ47a 17Æ43**

CD – Long duration 0Æ30b

UC – Short duration 0Æ13b

UC – Long duration 0Æ16b

IBDQ z-score F

Disease duration

Short duration 0Æ20 15Æ47**

Long duration �0Æ23


CD – Short duration 0Æ39a 7Æ21**

CD – Long duration �0Æ19b

UC– Short duration 0Æ00b

UC– Long duration �0Æ25b

RFIPC z-score F

Disease duration

Short duration 0Æ24 13Æ14**

Long duration �0Æ24


CD – Short duration 0Æ36 1Æ31

CD – Long duration �0Æ11

UC – Short duration 0Æ13

UC – Long duration �0Æ31

**p < 0Æ01, for Diagnosis · Disease duration the scores with differ-

ent superscripts are significantly different at p < 0Æ05. Values are

presented in z-scores. Covariates appearing in the model are evaluated

at Sense of coherence z = 0Æ08, and log-transformed Number of

relapses z = 0Æ90. Post hoc tests of Diagnosis · Disease duration were

not performed for RFIPC due to the non-significant interaction effect.



programmes. However, much of the existing work in this

area has combined people with UC and CD and short disease

duration with long disease duration. Since the diseases are

very different with different outcomes the efficacy of the

educational programmes could be complicated by this

approach. The present findings emphasise the importance of

considering disease duration in this context. Several reports

of group-based education programmes for IBD patients have

been published during recent years. One study included only

patients with short disease duration (<2 years) (Jaghult et al.

2007), while two other studies also included patients with long

disease duration (Larsson et al. 2003, Oxelmark et al. 2007).

None of these studies found any improvement in HRQOL for

the participants in the educational programmes, although the

programmes were highly appreciated by the patients. It has

also been found that patients have a high level of interest in

using the internet to assist with the management of their

disease (Angelucci et al. 2009). In light of the findings of this

study a more systematic focus on newly diagnosed patients,

especially those with CD, may be beneficial and perhaps be

achieved by integrating web-based patient education

programmes directed toward this patient sub-population.

This study shows that there are differences between

patients with short disease duration and patients with long

disease duration. Newly diagnosed patients have lower scores

of HRQOL and this could be due to the fact that the disease

has a tendency to be more active in the first course, or that the

patient may have not yet received the most adequate

treatment. The lower scores in HRQOL in this group can

also depend on the fact that IBD primarily affects young

individuals who may be busy at work or at school and the

disease affects all aspects of life.

This study shows that patients in the short-duration groups

are in greatest need of education and support. This corre-

sponds with the results from Oxelmark et al., who found no

significant improvement in HRQOL in patients with IBD

after participation in a group-based education programme,

except for patients with disease duration of less than

three years (Oxelmark et al. 2007). Zutshi et al. (2007)

suggested that education should be provided at an early

stage of the disease and also that information should be

collected regarding what patients consider to be helpful in

coping with the disease. Another study found that medical

treatment should be combined with psychosocial support and

interventions aiming to reduce psychosocial distress and

increase quality of life (Larsson et al. 2008). With regard to

improving treatment adherence, the most effective approach

has been suggested to be a combination of education and

behavioural interventions (Lakatos 2009). It is important to

identify and to acquire greater knowledge about the most

burdensome issues for patients, as this helps to individualise

patient education and support so that caregivers can focus on

those topics, to reduce patients’ IBD symptoms and stress and

to promote effective coping strategies. In the long run this

may lead to improved HRQOL and fewer relapses. Predicting

the HRQOL of patients with IBD is essential to be able to

develop effective nursing intervention programmes. To our

knowledge, no previous studies have focused on HRQOL

among patients with Crohn’s disease and ulcerative colitis in

relation to disease duration. Which patients are in the

greatest need of education and support? This information is

also important since the number of patients with IBD is

increasing.

Conclusion

This study shows that patients with longer disease duration

experienced a better HRQOL than patients with short disease

duration. This is especially clear with regard to patients

suffering from CD. CD patients with short disease duration

have the lowest HRQOL and are in greatest need of

education and support in the early stages of their disease.

Figure 1 The Health Index and the IBDQ

as dependent variables in a MANCOVAMANCOVA with

Sense of coherence and log-transformed

Number of relapses as covariates and

Disease duration and Diagnosis · Disease

duration as independent variables with

significant effects. Estimated means in the

figure are presented as z-scores at Sense of

coherence z = 0Æ08, and log-transformed

Number of relapses z = 0Æ90.

S Jaghult et al.


Relevance to clinical practice

To be able to develop effective nursing intervention

programmes it is important to predict the HRQOL of

patients with IBD and to identify which patients’ are in the

greatest need of education and support. This study shows

that CD patients with short disease duration have the lowest

HRQOL and are in the greatest need of education and

support.

Contribution

Study design: SJ, FS, UBJ, RW, MK; data collection and

analysis: SJ, FS and manuscript preparation: SJ, FS, UBJ, RW,

MK.

Conflict of interest

There is no conflict of interest to declare.

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Identifying predictors of low health-related quality of life among patients with inflammatory bowel disease: comparison between Crohn’s disease and ulcerative colitis with disease