The importance of illness perceptions,quality of life and psychological status in patients with ulcerative colitis and Crohn’s disease

Abstract

The present study investigates illness perceptions of inflammatory bowel disease patients in an outpatient population, examining whether these illness perceptions are related to disease severity, quality of life and psychological adjustment. A cohort of 102 inflammatory bowel disease outpatients was prospectively enrolled on the study. The participants completed a questionnaire assessing illness perceptions, anxiety, depression and disease-specific symptoms. The study has identified specific illness perceptions of inflammatory bowel disease sufferers that are strongly associated with patients’ quality of life. By raising and addressing these issues, clinicians may be able to allay these significant and often unexpressed concerns, and improve quality of life for patients with inflammatory bowel disease.

Keywords

Crohn’s disease illness perceptions psychological status quality of life ulcerative colitis

Living with a chronic illness can be challenging. Studies assessing psychological functioning in chronic diseases, such as arthritis and multiple sclerosis, suggest that patients experience high levels of distress and stigmatisation, greater psychiatric co-morbidity and poorer quality of life (QOL; Earnshaw and Quinn, 2012; Katon and Ciechanowski, 2002). Inflammatory bowel disease (IBD) encompasses ulcerative colitis (UC) and Crohn’s disease (CD) both of which are chronic inflammatory gastrointestinal disorders that can have a significant impact upon a patient’s QOL. The impact of chronic illnesses, such as UC and CD, is influenced not only by physical symptoms but also by psychosocial factors. The course of these diseases is unpredictable, and the treatment of IBD focuses on the maintenance of remission and treatment of relapse (Goldring et al., 2002). A recent review has shown IBD to be linked with genetic disposition, environmental triggers, including stress, the central nervous system and immune function (Farrell and Peppercorn, 2002).

Health-related quality of life (HRQOL) has gained a wide acceptance in recent years as an important outcome in chronic illnesses. HRQOL complements traditional outcome measures of disease severity by assessing emotional and social functioning, in addition to physical impairment (Irvine, 1997). HRQOL measures are useful in the assessment of the quality of health-care delivery, improvement of disease-related knowledge and measurement of treatment efficacy or disease outcome (Borgaonkar and Irvine, 2000). A recent study revealed that one-third of the IBD patients feel their QOL is greatly affected by their disease (Walters, 2000). However, the specific concerns responsible for this are poorly understood.

A biopsychosocial approach to disease suggests that a relationship exists between psychosocial characteristics and disease exacerbation (Engel, 1977). According to this approach, psychological and social characteristics may contribute to the pathophysiological disease process, in addition to patients’ perception of poor health. These appear to operate independently of biological factors (Drossman et al., 1988). Some research suggests that the psychological disorder is a consequence of disease activity (Porcelli et al., 1996).

There are numerous studies that provide evidence for the contribution of psychological factors on disease physiology. In examining the relationship between stress and the immune system, Vedhara et al. (1999) found a significant relationship between patient expectations and self-reported pain scores. The phenomenon of the placebo effect also succinctly demonstrates the effect psychological processes can have on disease physiology. Kaptchuk et al. (2008), in their randomised controlled trial examining the placebo effect on irritable bowel syndrome (IBS) patients, found that placebo effect can significantly impact reported disease physiology. Specifically, Kaptchuk et al. (2008) found that patients who had a good relationship with their practitioner reported a better global improvement, despite receiving placebo treatment, while placebo treatment with only limited interaction with a practitioner was more effective for IBS patients than remaining on a waiting list.

The present study uses the self-regulation model (SRM) (Leventhal et al., 1992) as a framework to investigate the illness perceptions of IBD sufferers. Central to this model is the representation, or perception, that patients have about their illness. Illness perceptions give personal meaning to symptoms and disorder. Illness perceptions are known to have important implications for how patients conceptualise and cope with their condition (Chilcot et al., 2011; DeJong et al., 2012; Leventhal et al., 1984). Patient’s illness perceptions have also been shown to predict decisions to seek health care (Leventhal et al., 1992), comply with medical advice (Horne et al., 2009) and to help cope successfully with chronic illness (Moss-Morris et al., 1996).

Patients with IBD have shown to have a higher prevalence of psychological disorder than the general population (Guthrie et al., 2002), while CD patients have demonstrated more vulnerability to psychosocial disorder than UC patients (Drossman et al., 1989). However, despite much research being conducted in this arena, the relationship between IBD and psychological disorder remains unclear. Evidence in support of associations between psychological functioning and disease exacerbation has been inconsistent, perhaps as a result of conceptual and methodological weaknesses.

Little is known about the illness perceptions of individuals with IBD. The present study focuses on the importance of illness perceptions on QOL and psychological status in patients with UC and CD. The specific aims of the study are twofold: to explore what the illness perceptions of IBD patients in an outpatient population are, and to examine whether illness perceptions are related to disease severity, QOL and psychological adjustment in patients with IBD.

Methodology

Sample

A total of 102 IBD patients were recruited from the gastroenterology department at a London teaching hospital. The participants were a convenience sample waiting for a scheduled outpatient appointment with a physician. Patients were approached if their medical notes clearly demonstrated a confirmed diagnosis of either UC or CD, for a period of more than 6 months. Patients were excluded if they were under 18 years of age, had suffered from a co-morbid illness (e.g. colorectal cancer and depression) or if they could not speak English. Patients who chose not to participate were not recorded. All measures were completed during the same encounter. The order in which the measures were given was randomised in order to avoid fatigue. The study was approved by the NHS Research Ethics Committee. The participants provided informed consent.

As well as the completion of a series of measures, patients’ levels of haematocrit (Hcrit), erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) were recorded. Hcrit is a blood test that determines the proportion of red blood cells in the patients’ blood and is used to monitor disease severity, since the inflammation associated with IBD often causes anaemia. Lower levels of Hcrit are associated with disease severity. CRP is a non-specific test useful in monitoring chronic inflammatory conditions, such as IBD, in order to detect flare-ups, although CRP is not specific enough to diagnose disease, it serves as a general marker for infection and inflammation. High amounts of CRP in the blood suggest the presence of inflammation. CRP is used alongside ESR to detect inflammation. ESR is another non-specific test used to help detect illnesses associated with acute and chronic inflammation. High ESR scores are associated with increased disease inflammation.

Measures

The Hospital Anxiety and Depression Scale (HADS)

HADS (Zigmond and Snaith, 1983) is a self-assessment scale designed specifically for use with medical outpatients, measuring the severity of psychological symptoms. It contains 14 items using a 4-grade Likert scale (0–3), with subscales for anxiety (7 items) and depression (7 items) graded for severity; higher scores indicate greater level of depression and anxiety. A score ≥8, on either subscale, indicates ‘possible psychological disorder’; a higher threshold of ≥11 is indicative of ‘probable psychological disorder’ (i.e. clinical depression).

The Revised Illness Perception Questionnaire (IPQ-R)

IPQ-R (Moss-Morris et al., 2002) provides a quantitative measure of the dimensions of the patient’s illness representation, as described in Leventhal’s self-regulatory model (Leventhal et al., 1984). The measure has demonstrated good reliability and validity across several illness groups, and contains eight cognitive subscales, which assess timeline acute/chronic, timeline cyclical, consequences, personal control, treatment control, illness coherence, emotional representation and causal beliefs. Each subscale consists of a different number of items, and each item consists of a statement (e.g. My illness will last a long time). Patients are required to indicate their response using a 5-point scale, ranging from ‘strongly disagree’ (1) to ‘strongly agree’ (5). The total score is summed for each scale and divided by the number of items. Lower scores indicate fewer reported consequences of IBD. The ‘cause’ component is measured differently because each of the causal items represents a specific causal belief (e.g. ‘my personality caused my IBD’, or ‘a germ or virus caused my IBD’). The identity measure was omitted from the present study, as it is a short general measure of non-specific symptoms, which was not considered relevant for patients of the current study, who suffer from specific symptoms, which may vary between the two IBD conditions.

The UK Inflammatory Bowel Disease Questionnaire (UK IBDQ)

IBDQ (Cheung et al., 2000) is a disease-specific measurement of HRQOL. It evaluates the general activities of daily living, specific intestinal function, such as bowel habit and abdominal pain, in addition to social performance, personal interaction and emotional status. The UK IBDQ contains 32 items and consists of five subscales: emotional function, bowel function I (bowel movements and use of facilities), social function, bowel function II (general bowel symptoms) and systemic function rated on a 4-grade Likert scale (1–4). Total IBDQ scores range from 32 to 128, with higher scores reflecting better QOL and well-being.

Analysis

All data were analysed using IBM SPSS Statistics 19. In addition to descriptive statistics demonstrating patients’ mean disease-related scores, and HADS scores, the factor structure of the IPQ-R was tested using principal components analysis (PCA). Correlation analyses linking demographic variables with biological markers, psychological variables, illness perception variables and disease-specific variables were also examined. Univariate analysis was used to estimate the association of individual variables with QOL, anxiety and depression. Three 5-block hierarchical regression models were also conducted. The first regression model was concerned with predictors of QOL among IBD patients, while the second and third models were concerned with predictors of anxiety and depression among IBD patients. The purpose of the blocking procedure was to explore whether the addition of subsequent biological markers (i.e. Hcrit, ESR and CRP levels), psychological variables (i.e. anxiety, depression and QOL), illness perception variables (i.e. timeline acute/chronic, timeline cyclical, consequences, personal control, treatment control, illness coherence and emotional representation) and disease-related variables (i.e. emotional function, bowel function, social function and systemic function) would add predictive power to the preceding demographic variables (i.e. age, gender and disease duration), as significant predictors of QOL (see Table 1), anxiety (see Table 2) and depression (see Table 3) among IBD patients.

Table 1.

Hierarchical regression model predicting QOL among IBD patients (β: standardised coefficient).

Variables	Block 1 β	Block 2 β	Block 3 β	Block 4 β	Block 5 β
Age	−.05	−.09	−.13	−.15	.04
Gender	−.09	−.08	−.02	.02	−.02
Disease duration	−.10	−.09	−.11	−.10	−.01
Hcrit		−.07	−.14	−.09	−.01
ESR		.24	.08	.09	−.03
CRP		−.15	−.02	−.03	.02
Anxiety			−.55***	−.35*	−.01
Depression			.10	.05	.03
IPQ-R I: timeline acute/chronic				−.15	.01
IPQ-R II: timeline cyclical				.14	.02
IPQ-R III: consequences				−.24	.01
IPQ-R IV: personal control				−.04	.02
IPQ-R V: treatment control				.31**	−.01
IPQ-R VI: illness coherence				-.04	.002
IPQ-R VII: emotional representation				−.13	.01
IBDQ I: emotional function					.34***
IBDQ II: bowel function I					.34***
IBDQ III: social function					.34***
IBDQ IV: bowel function II					−.03
IBDQ V: systemic function					.14***
R² change	.01	.07	.21	.18	.51
df	3/69	3/66	2/64	7/57	5/52
F change	.34	1.62	9.38**	2.85***	387.97***

IPQ-R: Revised Illness Perception Questionnaire; Hcrit: haematocrit; ESR: erythrocyte sedimentation rate; CRP: C-reactive protein; IBD: inflammatory bowel disease; IBDQ: Inflammatory Bowel Disease Questionnaire.

p < .05; **p < .01; ***p < .001.

Table 2.

Hierarchical regression model predicting anxiety among IBD patients (β: standardised coefficient).

Variables	Block 1 β	Block 2 β	Block 3 β	Block 4 β	Block 5 β
Age	−.06	−1.00	−.06	−.04	.04
Gender	.13	.12	.06	.04	.02
Disease duration	.01	−.02	−.09	−.07	−.06
Hcrit		−.17	−.07	−.10	−.05
ESR		−.36**	−.09	−.15	−.14
CRP		.28*	.12	.11	.06
Depression			.52***	.41***	.32*
QOL			−.34***	−.25*	−.30
IPQ-R I: timeline acute/chronic				.01	.05
IPQ-R II: timeline cyclical				−.06	−.05
IPQ-R III: consequences				−.001	.03
IPQ-R IV: personal control				.14	.18
IPQ-R V: treatment control				.09	.11
IPQ-R VI: illness coherence				.06	.12
IPQ-R VII: emotional representation				.19	.07
IBDQ I: emotional function					−.41
IBDQ II: bowel function I					.11
IBDQ III: social function					.19
IBDQ IV: bowel function II					−.02
IBDQ V: systemic function					.08
R² change	.02	.12	.42	.07	.04
df	3/69	3/66	2/64	7/57	5/52
F change	.46	3.09	30.11***	1.41***	1.27***

IPQ-R: Revised Illness Perception Questionnaire; Hcrit: haematocrit; QOL: quality of life; ESR: erythrocyte sedimentation rate; CRP: C-reactive protein; IBD: inflammatory bowel disease; IBDQ: Inflammatory Bowel Disease Questionnaire.

p < .05; **p < .01; ***p < .001.

Table 3.

Hierarchical regression model predicting depression among IBD patients (β: standardised coefficient).

Variables	Block 1 β	Block 2 β	Block 3 β	Block 4 β	Block 5 β
Age	−.08	−.13	−.05	.06	.06
Gender	.07	.07	.00	−.01	−.02
Disease duration	.11	.07	.09	.14	.13
Hcrit		−.22	−.11	−.05	−.03
ESR		−.37	−.15	−.14	−.13
CRP		.19	.03	.06	.02
Anxiety			.65***	.43***	.35*
QOL			.08	.04	.83
IPQ-R I: timeline acute/chronic				.05	.04
IPQ-R II: timeline cyclical				.14	.03
IPQ-R III: consequences				.20	.18
IPQ-R IV: personal control				−.09	−.12
IPQ-R V: treatment control				.08	.02
IPQ-R VI: illness coherence				.22*	.26*
IPQ-R VII: emotional representation				.13	.03
IBDQ I: emotional function					−.48
IBDQ II: bowel function I					−.10
IBDQ III: social function					−.28
IBDQ IV: bowel function II					.19
IBDQ V: systemic function					−.14
R² change	.03	.10	.32	.15	.03
df	3/69	3/66	2/64	7/57	5/52
F change	.69	2.61	18.96***	2.98***	.90***

p < .05; ***p < .001.

Results

Sample characteristics

The sample consisted of 46 UC and 56 CD patients, with 35 male and 67 female IBD patients. Ages ranged from 18 to 90 years, with a mean age of 41.9 years (standard deviation (SD) = 16.57). The mean age of CD patients was significantly lower than for UC patients. Disease duration ranged from 1 to 53 years; the mean duration was 8.8 years (SD = 8.68). Patients had relatively low disease activity, as supported by the minimally raised ESR (UC mean = 18.75; CD mean = 18.17) and CRP (UC mean = 8.05; CD mean = 8.94) results. Patients’ total mean disease-specific QOL score was 93. Higher anxiety scores were associated with lower QOL scores.

UC and CD patients reported similar levels of anxiety and depression. Scores on the HADS anxiety and depression subscales ranged from 0 to 18. The mean anxiety scores (UC = 9; CD = 8.68) reflect that patients suffered from anxiety related to their illness, and mean depression scores (UC = 6.93; CD = 6.8) reflect normal levels of depression.

PCA

The factor structure of the causal subscale of the IPQ-R was tested using PCA. Prior to performing PCA, the suitability of the data for factor analysis was assessed. Inspection of the correlation matrix revealed the presence of many coefficients of >.3. The Kaiser–Meyer–Oklin value was .73, exceeding the recommended value of .6 (Kaiser, 1974), while Bartlett’s Test of Sphericity (Bartlett, 1954) reached statistical significance (<.001), supporting the factorability of the correlation matrix. PCA revealed the presence of four components with eigenvalues greater than 1, explaining a total of 60 per cent of the variance. Using Cattell’s Scree Test, three components were retained for further investigation. To aid in the interpretation of these components, Varimax rotation was performed. The rotated solution revealed the presence of simple structure, with all components showing a number of strong loadings.

The three factor solution explained a total of 51.38 per cent of the variance: 27.43 per cent, 13.63 per cent and 10.3 per cent, respectively. Factor I, entitled behavioural attributes, contained eight items associated with behavioural factors contributing to the perceptions of the disease relapse, including stress, diet, previous poor medical care, own behaviour, ageing, smoking, alcohol and accident/injury. Factor II, entitled environmental attributes, contained four items associated with predominantly external factors contributing to patients’ perceptions of disease relapse, including hereditary factors, germ/virus, pollution and altered immunity. Factor III, entitled emotional attributes, contained four items associated with emotional factors believed to affect disease relapse, including family problems, overwork, emotional state and bad luck.

The most commonly reported causal attributions of IBD by patients were stress (56.9%), overwork (32.4%) and family problems (23.6%), while the least reported causal attributions were drinking alcohol (70.5%), personality (66%) and smoking (62.8%). Nearly two-thirds of the patients, 62.5 per cent of CD patients and 63 per cent of UC patients, felt that smoking had no causal relationship to their disease.

Correlational analyses

Correlations linking demographic variables with biological markers, psychological variables, illness perception variables and disease-specific variables were examined. Age was significantly negatively correlated with disease duration (r(102)−.48, p < .001), the biological disease marker Hcrit (r(102)−.30, p < .01), timeline cyclical (r(102)−.25, p < .001) and consequences (r(102)−.20, p < .05), suggesting that older patients were more likely to believe that their illness would last a long time and would have serious consequences on their lives.

In terms of illness perception variables, timeline cyclical was positively correlated with having a better understanding of the illness (r(102).41, p < .001), social function (r(102).24, p < .05) and bowel function II (r(102).57, p < .01) The consequences were positively correlated with personal control (r(102).40, p < .001), emotional representation (r(102).24, p < .05) and bowel function II, while showing a significant negative correlation with emotional function (r(102)−.35, p < .001), social function (r(102)−.35, p < .001) and systemic function(r(102)−.31, p < .01). Personal control was positively correlated with emotional representation (r(102).41, p < .001) and bowel function II (r(102).37, p < .001), while being negatively correlated with emotional function (r(102)−.25, p < .01), social function (r(102)−.29, p < .01) and systemic function (r(102)−.2, p < .05). Treatment control was significantly correlated with illness coherence (r(102).26, p < .01), emotional function (r(102).26, p < .01), social function (r(102).23, p < .05), bowel function II (r(102).55, p < .01) and systemic function (r(102).22, p < .05). Illness coherence was correlated with bowel function II (r(102).31, p < .001), while emotional representation was negatively correlated with emotional function (r(102)−.62, p < .001), bowel function I (r(102)−.22, p < .05), social function (r(102)−.43, p < .001) and systemic function (r(102)−.40, p < .001).

In terms of disease-related variables, emotional function showed positive correlation with bowel function I (r(102).54, p < .001), social function (r(102).76, p < .001) and systemic function (r(102).74, p < .001). Bowel function I was positively correlated with social function (r(102).76, p < .001) and systemic function (r(102).64, p < .001), while social function was correlated with systemic function (r(102).66, p < .001).

Predictors of QOL among IBD patients

Univariate analysis showed significant positive associations between QOL and timeline cyclical (p < .05), treatment control (p < .001), emotional function (p < .001), bowel function I (p < .001), social function (p < .001) and systemic function (p < .001). Patients who believed their illness would last a short time were more likely to have higher QOL scores, while patients who believed their IBD would have serious consequences displayed lower QOL scores, thus reflecting the detrimental effect of the illness on patients’ QOL. Significant negative associations were identified between QOL and anxiety (p < .001), depression (p < .001), consequences (p < .001), personal control (p < .001) and emotional representation (p < .001). Those individuals who perceived their illness to have significant consequences were more likely to report a lower QOL score, as were those patients who did not perceive themselves to have control over their illness and those patients who reported higher numbers of depressive symptoms.

In terms of the hierarchical regression model predicting QOL, depression remained significant through blocks 3 and 4, demonstrating significant negative association with QOL. Block 1 added 1 per cent predictive power, while the addition of biological markers to block 2 added 7 per cent predictive power to the model. The addition of the psychological variables to block 3 significantly added 21 per cent predictive power to the model (F(2/64) = 9.38, p < .01). The addition of illness perception variables added 18 per cent to the model, with treatment control demonstrating significant positive association with QOL, suggesting that patients’ perceptions of medication controlling their illness is positively predictive of QOL. The addition of disease-specific IBD variables to block 5 significantly added 51 per cent to the model (F(5/52) = 387.97, p < .001). Emotional representation, bowel function I, social function and systemic function demonstrated significant positive association with QOL among IBD patients, indicating that the ability to perform normal activities, bowel movement and use of facilities and having enough energy levels all have a significant positive impact on IBD patients’ QOL (see Table 1).

Predictors of anxiety among IBD patients

Univariate analysis showed significant positive associations between anxiety and depression (p < .001), consequences (p < .001), personal control (p < .001), illness coherence (p < .01) and emotional representation (p < .001), demonstrating that patients who perceived their illness to have serious consequences were more likely to have higher levels of anxiety. Patients who perceived themselves to have less control over their illness also reported higher levels of anxiety. Patients who demonstrated a better understanding of their illness were also more likely to have higher anxiety scores. Significant negative associations were identified between anxiety and QOL (p < .001), emotional function (p < .001), bowel function I (p < .01), social function (p < .001) and systemic function (p < .001). Patients who reported impaired bowel function, systemic function and emotional function as a result of their illness and an inability to perform their normal activities were more likely to report higher levels of anxiety.

In terms of predictors of anxiety in the hierarchical regression model, selected biological markers demonstrated significant association with anxiety among IBD patients, while ESR was negatively associated with anxiety; CRP levels were positively associated with anxiety among IBD patients. The addition of age, gender and disease duration into block 1 did not prove significant and added 2 per cent predictive power to the model; the addition of biological markers into block 2 was also not significant and added 12 per cent predictive power to the model. The addition of psychological variables to block 3 significantly added 42 per cent predictive power to the model (F(2/64) = 30.11, p < .001). Depression remained significantly positively associated with anxiety throughout blocks 3–5, indicating a positive association between anxiety and depression. QOL remained significantly negatively associated with anxiety through blocks 3 and 4, demonstrating the negative impact of anxiety levels on QOL. The addition of illness perception variables to block 4 significantly added 7 per cent predictive power to the model (F(7/57) = 1.41, p < .001), while the addition of disease-specific IBD variables significantly added 4 per cent predictive power to the model (F(5/52) = 1.27, p < .001; see Table 2).

Predictors of depression among IBD patients

Univariate analysis showed significant positive associations between depression and anxiety (p < .001), timeline cyclical (p < .01), consequences (p < .001), treatment control (p < .05), illness coherence (p < .001), emotional representation (p < .001) and social function (p < .001). Those patients who believed that their disease would last a long time displayed higher levels of depression. Those patients who did not perceive that medication would control their illness and patients with better understanding of their illness were also more likely to display more depressive symptoms. Patients who felt that their illness impacted their ability to lead a normal life were more likely to have symptoms of depression. Depression showed significant negative association with a number of variables including QOL (p < .001), emotional function, bowel function I (p < .001), bowel function II (p < .05) and systemic function (p < .001). This demonstrates the negative impact both the physical symptoms and impaired social functioning can have on psychological well-being among IBD patients.

In terms of the hierarchical model looking at predictors of depression, the addition of demographic variables to block 1 added 3 per cent predictive power to the model, while the addition of biological marker variables to block 2 added 10 per cent predictive power to the model. The addition of psychological variables to block 3 significantly added 32 per cent predictive power to the model (F(2/64) = 18.96, p < .001), with anxiety demonstrating significant positive association with depression throughout blocks 3, 4 and 5. The addition of illness perception variables to block 4 significantly added 15 per cent predictive power to the model (F(7/57) = 2.98, p < .001); illness coherence demonstrated significant positive association with depression and remained significant throughout blocks 3 and 5, demonstrating that the more understanding patients have of their illness, the more likely they are to experience feelings of depression. The addition of disease-specific variables to block 5 significantly added 3 per cent predictive power to the model (F(5/52) = .90, p < .001; see Table 3).

Discussion

The purpose of the current study was to explore the importance of illness perceptions, QOL and psychological status of IBD patients in an outpatient population. This study demonstrates that patients’ psychological status and disease-related variables are important predictors of outcome. The present findings support and extend the findings of previous works regarding psychological functioning and IBD. Determining the QOL of IBD patients is important not only for medical reasons but also because of the social implications of the disease and the associated use of medical resources (Casellas et al., 2002). The present study demonstrates that psychological symptoms can have a significant impact on patient’s disease, while also demonstrating that perceptions of treatment control may mediate the link with disease severity.

Different dimensions that contribute to a patient’s illness perception are correlated. Reporting serious consequences of IBD was related to higher anxiety scores and was shown to have a detrimental effect on respondents’ social functioning. Belief that the disease would be long lasting was associated with higher levels of depression and increases in emotional expression. Patients’ feeling in control of their illness was associated with better general bowel function and better social function, in terms of feeling able to perform normal activities unimpeded. Belief that the individual had little control of their illness was associated with depression.

Illness perceptions were related in meaningful ways to coping strategies. Those respondents who perceived their illness to have serious consequences were more likely to have maladaptive coping in terms of expressing their emotions. Belief in the serious consequences of IBD was related to lower QOL, while perception of control over IBD or beliefs that the treatment could help control the illness was associated with better QOL. The negative impact of emotional representation in terms of expressing emotion was associated with both anxiety and depression. This is in line with previous studies demonstrating that emotional representation is associated with poor psychological adjustment, slow recovery and higher levels of distress among individuals with chronic illness (Moss-Morris et al., 1996).

The prediction of QOL was relatively straightforward. The addition of psychological variables contributed 21 per cent of the variance, with anxiety being negatively predictive of QOL, as can be expected. The addition of illness perceptions contributed 18 per cent of the variance; patients’ belief that medication could control the illness was predictive of QOL. The most significant addition to the model was disease-specific variables, which contributed 51 per cent of the variance. Emotional function, in terms of lower expression of anxiety and depression; good bowel function; good social function in terms of the perception of individuals to lead a normal life and carry out daily activities; and lower impact of the illness on an individual’s energy levels were positively predictive of QOL. Previous findings have shown that the appearance of health-related normality is important to IBD patients, and can impact QOL (Hall et al., 2005), further signifying the importance of being able to carry out daily activities and lead a normal life for the QOL of individuals with IBD.

Prediction of anxiety was relatively clear. The addition of psychological variables contributed 42 per cent variance to the model, with depression being predictive of anxiety and QOL negatively associated with anxiety. Although significant, the addition of illness perception variables and disease-specific variables contributed very little to the overall model, 7 per cent and 4 per cent, respectively. In terms of the prediction of depression, anxiety was strongly predictive of depression among patients, as can be expected. The addition of illness perception variables added 15 per cent variance to the model, with illness coherence retaining significance. This suggests that greater understanding of the illness is associated with higher levels of depression among patients in the present study.

The association between symptom severity and QOL is widely reported in the literature (Drossman et al., 1989; Han et al., 1998). It has also been reported that there is no definite relationship between disease distribution, disease activity and severity of symptoms (Bernklev et al., 2005). In the current study, patients had relatively low disease activity. However, this seemed of little relevance to patients. The most important factor was that individuals still suffered from IBD, demonstrating that no matter how low the disease activity, IBD continued to have a significant impact on patients’ lives. Personal control over the illness was also reflected in higher QOL scores.

Improved QOL is an important treatment goal in chronic disease patients. Disease activity is but one factor influencing QOL; patients’ knowledge and concerns about the disease, as well as coping, may also influence QOL (Sandborn, 2002). Integrating education into the care of IBD patients constitutes a good practice. Research shows that the patients feel insufficiently informed about their illness (Scholmerich et al., 1987). Lower perceived illness knowledge correlates with higher disease-related worries and concerns (Moser et al., 1995). Disease-related education may, thus, alleviate patient fears and concerns.

UC and CD have a negative influence on subjective functional status and may cause considerable worries and concerns. Findings demonstrate that several clinical factors have implications for IBD patients’ QOL. This knowledge could potentially play an important role in planning future treatment of IBD patients, both in terms of medical intervention and social and psychological support, and should be taken into consideration by health-care providers to optimise the available resources in the treatment of IBD patients.

In summary, many patients with IBD have fears, concerns and unmet needs regarding their disease, perceiving and experiencing problems in numerous domains of health-related QOL. Present findings emphasise the importance of considering disease activity when assessing patients’ overall functioning and QOL and suggest the value of attending to the psychological needs when disease has been active for some time. The results of the present study revealed that patients perceive themselves to have low personal control over their IBD. This could be addressed by an intervention programme specifically targeting self-efficacy and treatment control in IBD patients, which may have a beneficial effect on resulting illness perceptions. With stigmatised illnesses, such as IBD, it is likely that sufferers may find it difficult to disclose their illness, which may lead to feelings of isolation. An intervention programme with other sufferers may help to alleviate feelings of isolation while also promoting better understanding of the illness among a common group. Knowledge of these factors may be used by health professionals to improve illness perceptions of IBD patients and lessen the impact that the illness can have on patients’ lives.

Footnotes

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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