The Relationship of Inflammatory Bowel Disease Type and Activity to Psychological Functioning and Quality of Life

CLINICAL GASTROENTEROLOGY AND HEPATOLOGY 2006;4:1491–1501

The Relationship of Inflammatory Bowel Disease Type and Activity to Psychological Functioning and Quality of Life LESLEY A. GRAFF,*,‡ JOHN R. WALKER,*,‡ LISA LIX,§ IAN CLARA,* PATRICIA RAWSTHORNE,‡ LINDA ROGALA,‡ NORINE MILLER,‡ LAURA JAKUL,* CORY MCPHAIL,* JASON EDIGER,* and CHARLES N. BERNSTEIN‡,储 *Department of Psychology, §Department of Community Health Sciences, and the 储Department of Internal Medicine, University of Manitoba, Winnipeg, Manitoba, Canada; and the ‡University of Manitoba Inflammatory Bowel Disease Clinical and Research Centre, Winnipeg, Manitoba, Canada

Background & Aims: We aimed to assess the relationship of disease type and disease activity with psychological functioning and quality of life (QOL) in a population-based cohort of patients with recently diagnosed inflammatory bowel disease (IBD). Methods: A total of 388 individuals diagnosed within 7 years were recruited from a population-based registry of IBD patients for the Manitoba IBD Cohort Study. Participants completed a clinical interview and standardized self-report measures of positive and negative psychological functioning, and QOL. Disease activity was determined by symptom self-report over the prior 6 months; Harvey–Bradshaw or Powell–Tuck disease activity indices also were used. Disease type was determined through chart verification. Results: Seventy-four percent of Crohn’s disease and 66% of ulcerative colitis participants had active disease during the previous 6 months. Multivariate regression showed that those with active disease had higher levels of distress, health anxiety, and perceived stress, lower social support, well-being and mastery, and poorer disease-specific QOL, relative to those with inactive disease. Disease type was not contributory to psychological functioning or QOL. Pain anxiety (fear of pain) and pain-specific catastrophizing were not associated with disease activity, after controlling for other psychological variables. Participants with either active or inactive disease had suboptimal general QOL. Conclusions: Ulcerative colitis and Crohn’s disease participants were not differentiated in their psychological profiles. Given the strong association between disease-specific QOL, psychological functioning, and disease activity, it is important to be aware of related difficulties in patients with active IBD. There is a continued impact on QOL by the disease, even when it is inactive.

I

nflammatory bowel disease (IBD) is a chronic illness that has a high incidence in younger individuals.1 Disease flares can be intense and unpredictable, and the associated symptoms of pain, fatigue, and diarrhea can present a significant challenge for daily functioning. Medical and surgical management has varying success, with up to half of IBD patients experiencing relapses every year.2 Although those with IBD have either little or no increased mortality risk relative to the general population, many patients have concerns regarding medication side effects, risk of cancer, and need for surgery.3 All of these aspects can contribute to psychological distress and undermine quality of life (QOL) for those with IBD. There has long been an assumption that patients with Crohn’s disease (CD) and ulcerative colitis (UC) can be differentiated not only by disease presentation and markers, but also in their psychological functioning. The psychiatric literature

was still describing causative factors for IBD in the context of psychodynamic concepts such as unresolved childhood conflicts until at least the 1970s.4 With the advent of more refined diagnostic tools, and a better understanding of inflammatory and autoimmune processes, the causal emphasis has shifted but the assumption of CD/UC psychological distinction has lingered. Some recent studies have attempted to identify a psychological profile for CD and UC patients by using stable personality characteristics.5,6 Many others3,7–9 have looked at a broader range of psychological aspects, reporting associations with or differences in emotional distress and coping. A 1990 review of the psychological functioning of those with CD vs UC concluded that there was a trend in the literature for those with CD to manifest more psychological disturbance.10 This was echoed in a recent review of psychological factors relevant for IBD patients, which concluded that CD patients experience greater psychological morbidity (eg, higher anxiety, more maladaptive coping behaviors) than those with UC.11 The assessment of individual differences in psychological functioning for those with IBD has focused primarily on distress or anxiety, coping strategies, and stress. Psychological distress has been understood as the individual’s level of emotional upset, and has been found to be associated with higher disease activity, relapse, and health care use.3,12–14 Coping is defined broadly as an individual’s efforts to manage demand and conflict, and can encompass both adaptive and maladaptive strategies.15 Maladaptive coping strategies such as catastrophizing and social withdrawal have emerged as relevant for those with IBD, impacting disease-related concerns, perceived functioning, outcomes after surgery, and overall health status.16 –19 Catastrophizing also has been found to be significant for other chronic diseases.20 Studies in the past decade with prospective designs and more fine-grained measurements of stress, including life events, daily or chronic stressors, and perceived stress, have implicated stress more directly as impacting IBD symptomatology and disease activity.21–24 One area of negative or pathological psychological functioning not yet explored with IBD patients is the recently emerging concept of health anxiety. Heightened anxiety about one’s health, even in the context of a medical disorder, can underAbbreviations used in this paper: CD, Crohn’s disease; IBD, inflammatory bowel disease; IBDQ, Inflammatory Bowel Disease Questionnaire; QOL, Quality of life; SF-36, Medical Outcomes Study 36-item Short Form Questionnaire; UC, ulcerative colitis. © 2006 by the AGA Institute 1542-3565/06/$32.00 doi:10.1016/j.cgh.2006.09.027

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mine the impact of medical reassurance and increase the risk of poor adjustment to pain.25–27 Protective or positive psychological functioning factors generally have had little attention in IBD. Although social support has been found to contribute to coping for IBD patients3,28 and serve as a buffer for those experiencing high stress,14 other aspects of positive psychological functioning have been examined only briefly. Psychological well-being, which emphasizes one’s sense of general wellness and energy, has been assessed in only a few studies. IBD patients in remission were found to have similar levels of well-being relative to a normative community sample,29 and for CD patients, well-being was comparable regardless of whether remission was induced surgically or medically.30 However, the scale used for the studies was not a straightforward measure of the construct because it assessed both well-being and distress with a cumulative score.31 Finally, mastery, or one’s sense of ability to influence the environment and facilitate desired outcomes, has not been assessed in IBD patients, despite research suggesting that self-efficacy is relevant to health outcomes.32–36 QOL encompasses several dimensions in addition to physical functioning, including social, cognitive, and emotional functioning, and participation in daily activities.37 Active disease has been found to contribute to poor health-related QOL for IBD patients.38 – 41 A Spanish study found that as disease severity worsened, there was a corresponding worsening in QOL, regardless of disease subtype.42 Although these studies suggest a more central role for disease activity than disease type, none of them considered psychological functioning concurrently. Disease impact is much broader than just histologic or morphologic abnormalities because inflammatory activity and symptom intensity per se do not necessarily correlate with the individual’s report of impairment.43 There have been several methodologic issues in previous studies that limited conclusions and understanding of the relations among clinical outcomes and functioning for those with IBD. Many studies have included only one IBD subtype, so that direct comparisons of functioning for CD and UC patients cannot be made. Convenience samples of those presenting to clinics raise the possibility of sample bias, given that disease activity and/or psychological distress may be prompting the visit. Further, larger studies assessing QOL tend to measure disease and sociodemographic characteristics but no or few psychological domains. Studies assessing psychological factors have emphasized pathological functioning (eg, anxiety, distress) rather than resiliency or positive coping dimensions. The overall goal of the Manitoba IBD Cohort Study was to identify the longitudinal determinants of disease outcome across multiple domains including disease phenotype, genotype, comorbidity, psychological functioning, and demographic profiles. The aim of this study was to assess at baseline the relationship of disease type and disease activity with psychological functioning and QOL in a population-based cohort of patients with recently diagnosed IBD.

Materials and Methods Study Subjects The Manitoba IBD Cohort Study was initiated in 2002, drawing on subjects from the University of Manitoba IBD

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Research Registry. This population-based registry was established in 1995. Residents of the province of Manitoba, Canada (population ⯝ 1,100,000), identified as having IBD through the administrative health database of Manitoba Health (the government agency that provides comprehensive health coverage to all residents), were eligible for inclusion in the registry. All outpatient and inpatient health system contacts were identified by International Classification of Diseases 9th revision diagnostic codes and attributed to the individual through a unique personal health identification number. Codes 555 (CD) and 556 (UC) in the provincial administrative database were used to flag eligible individuals who subsequently were invited to participate in the registry. When the registry was created in 1995, a random sample chart review of participants was undertaken to verify disease diagnosis. An administrative definition of true cases of IBD was developed (based on the number of health system contacts) that could be applied to the whole Manitoba Health administrative database so that estimates of IBD prevalence in the province could be determined in any year. An extraction of IBD patients who met the administrative definition for the years 1995–2000 was undertaken in 2000, and at that point mailings were sent out to recruit those with recently diagnosed IBD to update the registry. Just over half of the IBD population in Manitoba participates in the IBD Research Registry.44 The Manitoba IBD Cohort Study was approved by the University of Manitoba Health Research Ethics Board. At the time the Cohort Study was established, the estimated prevalence of IBD was 5720 in Manitoba, and there were 3192 IBD participants in the University of Manitoba IBD Research Registry. Individuals diagnosed within 7 years, and 18 years of age or older (n ⫽ 606), were identified from the Registry and contacted by research staff. A few individuals very close to age 18 were enrolled, and parental consent was obtained jointly with the individual’s consent. Approximately 12% of individuals could not be located, 5% moved out of province, were deceased, or were found to be too young, and 14% directly declined to take part. A total of 418 agreed to participate (Figure 1). For the first contact of the cohort study, participants completed a mailed survey package, and then were seen for an in-person interview by project staff. Of the 418 individuals enrolled between July 2002 and December 2003, 30 did not continue, either as a result of subsequently not completing the survey and/or interview (n ⫽ 19), withdrawal (n ⫽ 4), or ineligibility (n ⫽ 7), leaving 388 participants. Studies on the natural history of the disease suggest that the early years after diagnosis often involve significant fluctuation in disease activity.45,46 The choice of a 7-year time span to define those patients who were recently diagnosed was somewhat arbitrary and presumably could have been briefer. However, first, we did not want to narrow the window of recently diagnosed patients prematurely given that IBD is a chronic and lifelong disease, and, second, we wanted to ensure sufficient numbers for the overall project assessing determinants of IBD disease course over a 5-year period.

Assessment of Disease Type and Status Participants initially were categorized according to their report of IBD type, based on their physician’s diagnosis, as CD (n ⫽ 184), UC (n ⫽ 153), or ulcerative proctitis (n ⫽ 15). Ulcerative proctitis was collapsed into UC disease type. Thirty-

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and no IBD (1%). Of the 36 patients who initially did not know their subtype, 13 had CD, 9 had UC, 3 had indeterminate colitis, and 11 did not have IBD. Disease activity was determined based on patient report of symptom persistence for the previous 6 months, using a 6-level response format. Participants were asked, “In the past six months my disease has been (a) constantly active, giving me symptoms every day; (b) often active, giving me symptoms most days; (c) sometimes active, giving me symptoms on some days (for instance 1–2 days/week); (d) occasionally active, giving me symptoms 1–2 days/month; (e) rarely active, giving me symptoms on a few days in the past six months; and (f) I was well in the past 6 months, what I consider a remission or absence of symptoms.” Active disease was defined as experiencing symptoms constantly to occasionally (one of responses a– d), and inactive disease was defined as experiencing infrequent symptoms or feeling well (responses e or f). Standardized clinical indices for disease activity, the Harvey–Bradshaw for CD47 and Powell–Tuck for UC48 obtained during the clinical interview, were used to validate self-reported disease activity. As well, participants rated the severity of 3 core IBD symptoms—abdominal pain, diarrhea, and blood in the stool, over the previous 6 months on a 0 – 4 scale from not at all to extremely severe.

Assessment of Psychological Functioning and Quality of Life

Figure 1. Participant flow from population-based research registry to study participation.

six individuals did not know their disease subtype. The diagnoses subsequently were verified and the specific disease phenotype was identified through chart review, which was undertaken by study staff at physicians’ offices. Fourteen participants were found not to have definite IBD, and 18 were reclassified as having indeterminate colitis. A total of 187 were confirmed as CD and 169 as UC (Figure 1). There was good agreement between participants’ reports of physician diagnosis and chart-confirmed diagnosis, with 92% of those who reported CD or UC having it confirmed by chart review; only 3% of patients changed IBD subtype category, with an approximately equal number of UC/CD changes. The remaining patients who reported an IBD subtype subsequently were found to have indeterminate colitis (4%) or a misdiagnosis

Standardized self-report and interview measures were used to assess psychological functioning. Negative psychological functioning included distress, perceived stress, health anxiety, pain anxiety, and pain catastrophizing. Distress was measured using the Global Severity Index from the Symptom Checklist 90-Revised.49 The Cohen Perceived Stress Scale is a 14-item questionnaire that has been validated as a tool to examine the role of stress in disease.50,51 The Health Anxiety Questionnaire is a 21-item scale measuring the extent of health concerns and the somatic focus.26 The Pain Anxiety Symptom Scale52 is a 40-item measure developed to assess fear of pain. The Coping Strategies Questionnaire–Catastrophizing subscale was used to assess a common maladaptive response to pain.53 Positive psychological or resiliency factors of social support, well-being, and mastery also were assessed. The Multidimensional Scale of Perceived Social Support is a 12-item measure that assesses degree of support from friends and family.54 Two interview measures of psychological resilience were adopted from a national epidemiologic study of health and mental health in Canada. The Psychological Well-being Manifestations Scale55 is a 25-item scale that assesses the individual’s degree of a positive sense of themselves and their day-to-day functioning. The Mastery Scale56 assesses the person’s perceived control or efficacy in their life. To measure health-related QOL, both a disease-specific measure, the Inflammatory Bowel Disease Questionnaire (IBDQ),57 and a general measure, the Medical Outcomes Study 36-item Short Form (SF-36)58 were used. The IBDQ is the most commonly used and extensively validated QOL measure in IBD research.11 The 32 items were those rated most important for health-related QOL by IBD patients and their physicians, and assess 4 areas: gastrointestinal symptoms, systemic problems, emotional dysfunction, and social difficulties. As such, the IBDQ does include physical symptoms, with items assessing abdominal pain, cramping, and diarrhea, for example, as well as

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Table 1. IBD Participant Characteristics

Mean age, y (SD); range % Female Marital status (%) Married or common-law Single, never married Separated, divorced, widowed Education No postsecondary Trade school, diploma University Work status Working full or part time Home or student Retired Disabled Ethnic background Caucasian Mean disease duration, y (SD) Active disease past 6 months, (%) Mean pain severity (SD) Mean diarrhea severity (SD) Mean severity blood in stool (SD) Mean composite severity: abdominal pain, diarrhea, blood (SD) Ever hospitalized for IBD, (%) Hospitalized in past year? Missed work past 6 months because of IBD, (%) aDifferences

CD (n ⫽ 187)

UC (n ⫽ 169)

Pa

38.5 (14.6); 17–83 61%

43.0 (14.7); 17–79 58%

.01 .51

64% 28% 8%

71% 17% 12%

.02

43% 32% 25%

35% 34% 31%

.31

68% 23% 5% 3%

63% 21% 10% 7%

.13

93% 4.4 (2.1) 74% 2.0 (1.3) 2.1 (1.2) 0.7 (1.0) 4.7 (2.4) 61% 17% 39%

88% 4.3 (2.1) 66% 1.5 (1.2) 2.0 (1.3) 1.3 (1.4) 4.8 (3.0) 33% 11% 23%

.22 .76 .12 .00 .26 .00 .90 .01 .49 .00

assessed by t tests for continuous variables and ␹2 tests for categorical variables.

fatigue, depressed mood and worry, and social avoidance. The SF-36 assesses multiple indicators of health, and provides physical and mental health composite or summary scores.

Statistical Methods Univariate comparisons of CD and UC participants were performed for a variety of patient characteristics using 2-tailed independent samples t tests for continuous variables and ␹2 tests of association for categorical variables. Means and standard deviations were used to describe the sample in terms of the negative functioning, positive functioning, and QOL variables. When assessing psychosocial domains, there is often some degree of intercorrelation. There are 2 inferential goals when a study contains multiple correlated dependent variables: (1) conduct a global (ie, simultaneous) test of the association between the explanatory variables and the dependent variables, and (2) identify individual dependent variables that are responsible for rejection of the global null hypothesis. To satisfy the first objective, multivariate multiple regression was used to test the association between disease type and activity, and the negative psychological functioning, positive psychological functioning, and QOL variables. Age and gender were included as covariates because of the broad age span of the sample and the potential for psychological function and QOL to vary with these demographic variables. Four global multivariate models were specified. Each multivariate model had the same explanatory variables but different sets of dependent variables: (1) negative psychological functioning and disease-specific QOL variables, (2) negative psychological functioning and general QOL variables, (3) positive psychological functioning and disease-specific QOL

variables, and (4) positive psychological functioning and general QOL variables. A step-down analysis59,60 was conducted only for those global models that were statistically significant, to examine the association between the explanatory variables of disease type and activity status, and individual psychological functioning and QOL variables or subsets of these variables. Step-down analysis is an accepted technique used to test for group differences on multiple correlated outcomes.61,62 The dependent variables are assigned a priori ranking based on their theoretical interest and research importance, and group differences are tested sequentially using an analysis of covariance in which higher-ranked dependent variables serve as covariates in tests involving lower-ranked variables. The proportion of variance explained by disease type or activity status, R2, is reported for each global model, and partial eta squared (␩2p), the proportion of variance attributed to each of these explanatory variables, is reported for the step-down analyses.62

Results Participants The characteristics of study participants are summarized in Table 1. More than half of the sample were women. The sample was predominantly Caucasian, with small numbers having self-described backgrounds such as East Indian, Hispanic, or Metis (of Aboriginal and European ancestry). Almost three quarters of the CD and two thirds of the UC patients experienced active disease over the previous 6-month period, and less than one quarter of them had been hospitalized recently. Re-

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Table 2. Psychological Functioning and Quality of Life Scores for CD/UC by Active or Inactive Disease, and Community Sample Scores

Variable Negative psychological variables Distress Perceived stress Health anxiety Pain anxiety Pain catastrophizing Positive psychological variables Social support Psychological well-being Mastery Quality of life IBDQ–total SF-36 Physical functioning SF-36 Mental functioning

CD

UC

(total n ⫽ 187), mean (SD)

(total n ⫽ 169), mean (SD)

Active CD (n ⫽ 135), mean (SD)

Inactive UC (n ⫽ 109), mean (SD)

CD (n ⫽ 48), mean (SD)

UC (n ⫽ 56), mean (SD)

Comparison Community Samples, mean (SD)a

0.61 (0.47) 23.29 (8.43) 16.38 (10.27) 75.99 (29.40) 12.83 (4.40)

0.52 (0.42) 21.54 (7.67) 13.11 (8.56) 66.13 (28.31) 11.91 (4.49)

0.69 (0.48) 24.39 (8.36) 17.98 (10.60) 78.36 (29.61) 13.03 (4.48)

0.60 (0.44) 23.04 (7.72) 15.07 (9.16) 68.83 (28.04) 12.19 (4.04)

0.41 (0.39) 20.21 (7.92) 11.85 (7.70) 69.32 (28.03) 12.25 (4.16)

0.36 (0.37) 18.63 (6.73) 9.29 (5.59) 60.87 (28.36) 11.39 (5.24)

0.30 (0.30)64 19.62 (7.49)51 8.62 (7.96)26 65.04 (29.07)65 12.69 (8.18)66

5.55 (1.24)

5.47 (1.13)

5.40 (1.33)

5.34 (1.18)

5.98 (0.83)

5.72 (1.00)

5.58 (1.07)67

76.37 (16.10) 18.90 (4.71)

79.08 (16.74) 19.83 (3.95)

73.95 (16.24) 18.30 (4.78)

75.67 (17.33) 19.11 (4.14)

83.17 (13.72) 20.58 (4.10)

85.73 (13.35) 21.23 (3.14)

81.47 (14.62)68 19.63 (4.08)69

163.78 (30.42)

170.46 (30.65)

155.45 (27.90)

157.17 (28.82)

187.21 (24.61)

192.18 (17.82)

42.73 (5.05)

42.68 (4.69)

42.72 (5.18)

41.86 (5.17)

42.78 (4.74)

44.26 (3.04)

50.5 (9.0)63

42.88 (5.94)

43.39 (5.73)

42.61 (6.04)

43.15 (5.92)

43.66 (5.65)

43.86 (5.37)

51.7 (9.1)63

182.95 (N/A)b70

aPain

catastrophizing comparative sample was chronic pain patients with primarily low back pain; IBDQ comparative sample was IBD patients in remission. bSD not available; grand mean calculated from 11 site means reported by Irvine et al70 in 1994.

spondents with CD were significantly younger than those with UC, and more were single. Participants with CD who reported active disease in the previous 6 months had a higher mean score on the Harvey Bradshaw scale than those with inactive disease (6.84 vs 3.62; t ⫽ 5.76; P ⬍ .001). Similarly, participants with UC who reported active disease had a higher mean score on the Powell Tuck scale than those with inactive disease (6.72 vs 2.47; t ⫽ 6.16; P ⬍ .001). Symptom severity of the 3 primary IBD symptoms (abdominal pain, diarrhea, and blood in the stool) over the past 6 months was rated by participants and is reported in Table 1. These ratings (0 – 4) then were summed to give a composite symptom severity scale, with a score ranging from 0 to 12. There was no difference in diarrhea severity between CD and UC participants, but UC participants reported greater severity of blood in the stool and somewhat lower abdominal pain than CD participants. The composite symptom severity scale was not different for those with CD and UC; however, those with active disease reported significantly greater symptom severity (mean, 5.8) than those with inactive disease (mean, 2.7; P ⬍ .001).

Psychological Functioning and Quality of Life In Table 2, the psychological functioning scores are reported for disease type, and then broken down by disease type within disease activity. To provide a context for these scores, values are provided from previous studies that used community samples, or comparative clinical samples where applicable (see Appendix 1 for detailed study information).26,51,63–70 These comparison values are intended to serve as a point of reference only and are not compared statistically with the values in the IBD cohort sample because the samples were not matched

directly and may differ in composition by characteristics such as age, sex, and education. Even given this limitation, there is an evident pattern suggesting that those with active disease, regardless of disease type, typically have scores indicating lower functioning than those with inactive disease. Further, those with inactive disease generally had scores that were similar to those of community samples, with the exception of the general QOL (SF-36 Physical and Mental summary scales) measure. For this QOL measure, respondent scores were considerably lower than those reported for community samples not selected for specific health problems,70 regardless of whether they had CD or UC, or had active or inactive disease. Interestingly, the SF-36 composite scales correlated minimally with the symptom severity composite scale (SF-36 Physical r ⫽ ⫺0.10; SF-36 Mental r ⫽ ⫺0.16). As can be seen in Table 3, the global multivariate regression analyses indicated there was a significant association between disease activity, and the negative psychological functioning and disease-specific QOL (IBDQ) variables (P ⬍ .0001), accounting for 25% of the variance. As well, there was a significant association between disease activity and the negative functioning and general QOL (SF-36, Physical and Mental summary scales) variables (P ⬍ .0001). However, disease type was not statistically significant in these analyses, indicating CD and UC participants did not differ significantly in their psychological functioning or QOL after controlling for differences in disease activity. Step-down analyses (Table 3) showed that disease activity was associated significantly with perceived stress and distress (step 1, P ⬍ .0001), and also with health anxiety, after controlling for perceived stress and distress (step 2, P ⬍ .01). However, disease activity was not associated with catastrophizing and pain anxiety after controlling for perceived stress, distress, and

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Table 3. Multivariate Regression and Step-Down Analyses for Negative Psychological Functioning and Quality-of-Life Variables Disease status (active/inactive)

Global model: with IBDQ Step-down tests Step 1: perceived stress, distress Step 2: health anxiety (perceived stress, distress) Step 3: Pain catastrophizing, pain anxiety (health anxiety, perceived stress, distress) Step 4: IBDQ (pain catastrophizing, pain anxiety, health anxiety, perceived stress, distress) Global model: with SF-36 Step-down tests Step 1: Perceived stress, distress Step 2: health anxiety (perceived stress, distress) Step 3: pain catastrophizing, pain anxiety (health anxiety, perceived stress, distress) Step 4: SF-36 (pain catastrophizing, pain anxiety, health anxiety, perceived stress, distress)

Disease type (CD/UC) ␩2p

F

P

R2

18.73

⬍.0001

0.25

13.60

⬍.0001

7.02

␩2p

F

P

R2

1.80

.10

0.03

0.07

0.95

.39

0.01

.01

0.02

4.75

.03

0.01

1.46

.24

0.01

2.06

.13

0.01

67.33 6.06

⬍.0001 ⬍.0001

0.17

0.0 1.68

.97 .11

13.60

⬍.0001

0.07

0.95

.39

0.01

7.02

.01

0.02

4.75

.03

0.01

1.46

.24

0.01

2.06

.13

0.01

2.23

.11

0.01

0.47

.62

0.0

0.11

0.0 0.03

NOTE. For step-down tests, step 1 has perceived stress and distress as dependent variables; step 2 has health anxiety as the dependent variable and perceived stress and distress as covariates. Subsequent steps are interpreted in a similar way.

tioning variables and general QOL (SF-36) (P ⬍ .0001). Again, disease subtype was not statistically significant in either of these global multivariate models. The results of the step-down analysis for disease activity (Table 4) revealed that there was a significant association between disease activity and social support (step 1, P ⬍ .0001), and between disease activity and both well-being and mastery, after controlling for the effect of social support (step 2, P ⬍ .0001). Even after controlling for these positive psychological function variables, a significant association remained between disease activity and disease-specific QOL (IBDQ: step 3, P ⬍

health anxiety (step 3, P ⫽ .24). There was a significant association between disease activity and disease-specific QOL (step 4, P ⬍ .0001), but not for general QOL (step 4, P ⫽ .11), after controlling for all of the negative psychological functioning variables. Table 4 shows the results for the multivariate regression and step-down analyses for positive psychological functioning variables and QOL. A significant association was found between disease activity and both the positive psychological functioning variables and disease-specific QOL (IBDQ) (P ⬍ .0001). The same finding was observed for the positive psychological func-

Table 4. Multivariate Regression and Step-Down Analyses for Positive Psychological Functioning and Quality-of-Life Variables Disease status (active/inactive)

Global model: with IBDQ Step-down tests Step 1: (social support) Step 2: psychological well-being, mastery social support Step 3: IBDQ (psychological well-being, mastery, social support) Global model: with SF-36 Step-down tests Step 1: social support Step 2: psychological well-being, mastery (social support) Step 3: SF-36 (psychological well-being, mastery, social support)

F

P

R2

27.3

⬍.0001

0.24

14.37 10.03 67.31

⬍.0001 ⬍.0001 ⬍.0001

7.41

⬍.0001

14.37 10.03 0.94

⬍.0001 ⬍.0001 .39

Disease type (CD/UC) ␩2p

0.04 0.06 0.17 0.10 0.04 0.06 0.01

F

P

R2

1.5

.19

0.02

0.95 2.20 0.85

.33 .11 .36

1.1

.38

0.95 2.20 0.01

.33 .11 .99

␩2p

0.0 0.01 0.0 0.02 0.0 0.01 0.0

NOTE. For step-down tests, step 1 has social support as the dependent variable; step 2 has psychological well-being and mastery as dependent variables and social support as a covariate. Subsequent steps are interpreted in a similar way.

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Table 5. Correlation of Psychological and Quality-of-Life Variables With the Discriminant Function Comparing Participants With Active and Inactive Disease Variable Negative psychological variables Distress Perceived stress Health anxiety Pain anxiety Pain catastrophizing Positive psychological variables Social support Psychological well-being Mastery Quality of life IBDQ–total SF-36 Physical functioning SF-36 Mental functioning

Correlations with discriminant function

⫺0.46 ⫺0.41 ⫺0.48 ⫺0.22 ⫺0.15 0.31 0.45 0.39 0.89 0.15 0.13

.0001). However, there was no significant association between disease activity and general QOL after controlling for these positive characteristics (SF-36: step 3, P ⫽ .39). As a final phase in the multivariate analyses, discriminant function analysis was used to examine the relationships between disease activity and the negative and positive psychological functioning and QOL variables, to identify the combination of attributes (ie, the canonical discriminant function) that contributes maximally to separation between the active and inactive disease groups. In these analyses, age and gender were not included as covariates. Correlations between the individual variables and the discriminant function clarify the strength of the associations. Health anxiety, distress, psychological well-being, perceived stress, and mastery were all moderately to strongly correlated with the canonical discriminant function, and disease-specific QOL (IBDQ) was correlated even more highly (Table 5). The very strong association between disease activity and the IBDQ is not surprising given that this measure was designed to assess the impact of IBD on everyday life functioning and includes questions regarding specific gastrointestinal symptoms of diarrhea and abdominal pain.

Discussion This study of a population-based cohort of recently diagnosed IBD patients found that disease activity was related strongly to psychological functioning and disease-specific QOL, but disease type was not. UC and CD patients did not differ in their levels of distress and support, for example, or diseasespecific QOL, when disease activity was taken into account. In contrast, those with active disease had higher levels of distress, anxiety, and stress, and lower social support, psychological well-being, and mastery relative to those with inactive disease. Considering the pain-specific variables, there was no association between disease activity and pain catastrophizing or pain anxiety after controlling for health anxiety, perceived stress, and distress. Even after controlling for psychological functioning, disease activity still was associated strongly with poorer diseasespecific QOL. As well, neither disease activity nor disease type

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were related to general QOL after controlling for the psychological variables. The general QOL was somewhat lower regardless of whether one had CD or UC in the active or inactive phase. Some recent reviews have suggested that CD is associated with a poorer QOL and a greater impact of psychological comorbidity on QOL than UC.11,71 Our findings, however, are more consistent with a growing number of studies that have identified disease activity rather than disease type as a key factor.13,14,42,72,73 Previous studies, however, have been limited in their conclusions by assessing only one disease type, not controlling for disease activity, not assessing psychological factors concurrently, considering only a narrow range of psychological functioning, or using convenience samples such as tertiary clinic patients. In contrast, our study was able to simultaneously compare the relationship of disease activity and type, using a population-based cohort and a broad range of psychological functioning dimensions. When psychological variables have been considered together with disease activity they have been found to be highly relevant for QOL. Turnbull and Vallis74 assessed the role of psychological functioning and disease activity on disease-specific QOL for CD and UC patients. They found that disease activity and psychological distress significantly predicted QOL regardless of disease subtype. Others have found poorer QOL related to more severe psychological symptoms such as anxiety75 or maladaptive coping style (eg, withdrawal, irritability, self-pity), with the latter explaining more variance than disease activity.76 In this study, health anxiety was found to be significantly elevated for those with active compared with inactive disease. Scores for those with active disease were twice as high as those reported in previous studies with community samples. Heightened health anxiety can contribute to poor coping with illness.27 Health anxiety often is related to unrealistic fears and beliefs about illness.77 Further study of the concerns that are the focus of health anxiety in IBD and fluctuations in health anxiety with changes in disease activity may lead to interventions that could improve QOL. This study also found strong associations between disease activity and the positive psychological functioning variables, with detriment to these variables during active disease. These positive psychological variables reflect resiliency in dealing with life challenges. Considering social support, in our study those with active disease reported lower perceived support. Previous research has found that family support is seen as important by patients and is considered by them to be a factor that helps to manage the IBD.28 It would not be surprising that challenges in coping with symptoms of IBD can interfere with social activity and may put a strain on social relationships. Although those with IBD initially do not have different rates of marriage than the general population, over time the marital separation/divorce rates become slightly higher than those seen in the general population.78 The concept of mastery relates to one’s sense of ability to influence the environment and achieve desired outcomes, and in our study it was reduced for those with active disease. Drossman et al,19 using a single-item measure of mastery or self-efficacy, found that low levels predicted poor health outcome, including more pain and greater disability. Higher mastery has been found to be associated with positive coping for a range of health problems as diverse as schizophrenia and

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chronic obstructive pulmonary disease.34,36 Involving patients in understanding and managing their disease to reduce the negative impact of the disease on their routine activities may help them to maintain a reasonable sense of mastery. A recent trial with 700 IBD patients that involved education and an individualized self-management plan reported that participants experienced increased confidence in coping with the illness and decreased health care use while maintaining QOL levels.79 Although the correlational methods used in this study clarify the strength of relationships among the psychological variables, disease type, disease activity, and QOL, this analysis does not clarify the direction of causality. Nevertheless, QOL is conceptualized as an outcome that is affected by the disease and related factors. With regard to those factors, there has been considerable controversy, for example, concerning the extent to which psychological stress increases the risk of disease or exacerbation in symptoms.80 Clearly, having a serious and chronic illness is a major stressor, which increases psychological distress and risk for anxiety and depressive disorders.81,82 There is some evidence that life stress also increases the risk for symptom flare-ups.24,80 Similarly, it is reasonable to consider bidirectional influences of some of the other psychological variables. Social support has been reported previously as a resource for coping with IBD,3,28 and has contributed significantly to higher QOL after surgery for CD and UC patients.18 In the current study, there was lower perceived social support among those with active disease, but no conclusions could be drawn as to whether increased disease severity reduced the degree of perceived support, or higher perceived support reduced the risk of symptom flare-ups. A clearer understanding of these processes will require longitudinal research in which there can be an evaluation of factors predicting exacerbation and improvement in disease activity. It is not unexpected that there was such a close association between disease-specific QOL and active disease because the IBDQ was developed to be finely calibrated to IBD disease activity. The SF-36 has been used widely in IBD research to assess general QOL, with the IBDQ seen as complementary to ensure a comprehensive assessment.11 In our study, neither general physical nor mental aspects of QOL were differentiated by disease activity or disease type for IBD patients when psychological functioning was accounted for. However, SF-36 scores were lower than community norms for both respondents with active or inactive disease. The scores reported in our sample were similar to those reported in other large IBD samples, with a similar pattern of lower scores than community norms,41,76 suggesting that general QOL is affected by the presence of the disease, regardless of whether there were active symptoms. A practical methodologic outcome of the study was validation of patient self-report of IBD subtype. For ascertainment of disease type, it often is necessary to rely on patient self-report because it can be costly to routinely review health records or to examine each participant directly. We asked IBD patients to report their diagnosis “according to your physician.” When clinical records were reviewed to verify diagnoses, we found there was only modest change from the initial self-report, suggesting that self-report of disease subtype is a reasonable proxy for direct clinical re-evaluation in research studies. For those who are unsure of their type, it may be more problematic to be able to draw firm conclusions regarding their actual IBD status.

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Less than 10% of our cohort was unsure of their type, but they were the ones with the most variability in diagnostic status from the chart review. For some, their uncertainty likely reflected the state of the investigation regarding IBD because almost 40% of these patients were found in chart review to either have indeterminate colitis (8%) or to not have IBD (31%). This study had a number of strengths and some limitations. In comparison with much of the previous research, this study had the advantage of using a population-based cohort, drawing from a comprehensive province-wide administrative health database. To ensure the broadest level of participation, research staff traveled to smaller communities to interview participants who did not find it convenient to come to the urban center where the study was based. The sampling approach arguably provides a much more representative range of patients with IBD than those obtained through convenience or clinic samples. However, we have only limited information concerning the individuals who were approached but who chose not to participate in the study. For example, research staff observed that some elderly individuals who were eligible were more reluctant to participate than younger respondents because they anticipated that the interview and surveys would be time consuming for them to complete. Similarly, it is important to consider the nature of those who volunteered for the Manitoba IBD Cohort Study because there is the potential for systematic bias regarding relevant psychosocial characteristics. That is, those with greater distress or problems in functioning may be more willing to participate, given frequent contacts over the course of the longitudinal study. On the other hand, those with greater distress may be less willing to persevere with the regular demands across the study period and thus be less likely to volunteer. Epidemiologic research has found that those with less education, younger age, or more distress are less likely to participate in survey research,83 suggesting that the latter conclusion is more likely. It should be noted that the psychological profiling of those with IBD was but one aspect of the Cohort Study. When individuals were recruited they were informed that many aspects of their disease would be queried over time, including genetic links, bone fracture risk, and medication use. The psychological aspects to be studied were not highlighted any more or less than other components. Disease activity was measured by self-report, which potentially can be influenced by psychological functioning. Self-report of disease activity has been used in other large-scale studies of IBD patients in the community.76 In our study, participant reports were anchored on symptom frequency over a 6-month period, rather than qualitative description, and were crosschecked with validated clinical indices of disease activity. Active disease referred to active symptoms because we did not pursue measures of inflammation (endoscopy, radiology, or histology). As such, detailed IBD characterization, including extent of colitis, was not assessed. Biological markers also have limitations as measures of disease activity given that histology, endoscopy, and laboratory findings are correlated imperfectly with symptom presence or severity.84 It also may be that active psychological symptoms could impact objective measures of inflammation, although this would require prospective study, and still does not answer the direction of causality. Given the longitudinal design of the overall study, which involves assessment of participants semi-annually, it was seen as neither prac-

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tical nor safe to use more invasive assessments, such as endoscopy, to regularly measure disease activity. The analyses presented in this article were cross-sectional and consequently there is a limited ability to examine temporal relationships and causal direction among the key variables. In addition, although we considered comparisons between respondents with active and inactive disease and had some general comparative information available from published community studies, we did not have a matched community sample of individuals without IBD against which to compare our IBD sample on psychological functioning and QOL. Prospective longitudinal evaluation will help to determine the direction of the relationship among psychological factors such as stress, health anxiety, personal resiliency, and disease flare. It certainly is acknowledged that there can be some confounding regarding symptom generation and measurement when psychological symptoms including distress are present. As such, we are reporting an important association, and no cause and effect inference should be drawn. In conclusion, this study confirmed that disease activity is related significantly to impaired psychological functioning across a range of domains, whereas disease type (CD vs UC) is not. Disease-specific QOL is affected by psychological functioning and disease activity. Assessment of suboptimal psychological functioning may give some direction for targeted assistance to alleviate distress and potentially improve QOL.

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Address requests for reprints to: Lesley A. Graff, PhD, PZ350-771 Bannatyne Avenue, PsycHealth Centre, Winnipeg, Manitoba, Canada R3E 3N4. e-mail: [email protected]; fax: (204) 787-3755. Supported by a grant from the Canadian Institutes of Health Research. Also supported in part by a Canadian Institutes of Health Research Investigator Award and a Crohn’s and Colitis Foundation of Canada Research Scientist Award (C.N.B.).

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1501.e1

Appendix 1 Study Details of Community Comparison Samples for Psychological Functioning and Quality of Life Measures Variable

Measure

Negative psychological variables Distress SCL-90-R

Study Derogatis and Cleary,64 1977

Perceived stress

CPSS

Cohen and Williamson,51 1988

Health anxiety

HAQ

Lucock and Morley,26 1996

Pain anxiety

PASS

Osman et al,65 1994

Pain catastrophizing

CSQ-CAT

Lawson et al,66 1990

Positive psychologic variables Social support MSPSS Psychological wellbeing Mastery Quality of life IBDQ–total

Physical/mental functioning

Dahlem et al,67 1991

PWB

CCHS 1.268

Mastery

CCHS 1.169

IBDQ

Irvine et al,70 1994

SF-36

Hopman et al,63 2000

Population Stratified random sample in a diverse county in a large eastern US state Random sample of adult Americans following US census methodology British nonmedical employees of a health authority with no patient involvement American, communitydwelling adults in parttime university extension courses International sample of adult chronic pain patients with primarily low back pain from Canadian and American sites Students from large urban American universities Random sample of Canadians Random sample of Canadians Canadian patients with CD who have been in remission for a minimum of 6 weeks Random Canadian sample from 9 major urban centers

n

% Female

Mean age (SD)

974

49

46 (14.7)

2387

60

43 (17.2)

91

63

38 (12.4)

224

66

31 (10.1)

620

59

43 (NA)

154

79

27 (7.1)

36,270

55

40–44 (NA)a

39,712

54

40–44 (NA)a

150

50

32 (10.3)

9423

70

62.1 (13.4)

SCL90R, Global Severity Index from the Symptom Checklist 90-Revised; CPSS, Cohen Perceived Stress Scale; HAQ, Health Anxiety Questionnaire; CSQ-C, Coping Strategies Questionnaire Catastrophizing subscale; MSPSS, Multidimensional Scale of Perceived Social Support; PWB, Psychologicalal Well-being Manifestations Scale; CCHS, Canadian Community Health Survey. aSD not available because summary statistics are provided for 5-year strata only, with ranges in age from 15 to 80⫹ years.