The relationship between coping, health competence and patient participation among patients with inactive inflammatory bowel disease

Journal of Crohn's and Colitis (2014) 8, 401–408

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The relationship between coping, health competence and patient participation among patients with inactive inflammatory bowel disease S. Gandhi a , S. Jedel a,⁎, M.M. Hood b , E. Mutlu a , G. Swanson a , A. Keshavarzian a a

Department of Internal Medicine (Division of Digestive Disease and Nutrition), Rush University Medical Center, Chicago, IL, United States b Department of Behavioral Sciences, Rush University Medical Center, Chicago, IL, United States

Received 19 August 2013; received in revised form 14 October 2013; accepted 15 October 2013 KEYWORD Task oriented coping; Health competence; Inactive disease status; Inflammatory bowel disease

Abstract Background: Coping is an integral part of adjustment for patients with Inflammatory Bowel Disease but has not been well described in the literature. This study explored the relationship between coping, perceived health competence, patient preference for involvement in their treatment, depression and quality of life, particularly among patients with inactive disease (in remission). Methods: Subjects (n = 70) with active and inactive IBD completed questionnaires, including the Inflammatory Bowel Disease Quality of Life Questionnaire, Beck Depression Inventory, Perceived Health Competence Scale and the Coping Inventory for Stressful Situations. The Harvey Bradshaw Index measured disease activity. Results: Patients with inactive IBD demonstrated significantly more interest in participating in their treatment (p b .05), more perceived health competence (p = .001), less depressive symptoms (p b .001), more task oriented coping (p = .02), and better quality of life than those with active disease. Only Task Oriented Coping was significantly negatively associated with the number of flares among inactive patients (p b .001). Patient preference for participation in treatment was inversely associated with Avoidance (p = .005), Distraction (p = .008), and Social Diversion (p = .008) coping among inactive patients. Conclusion: Among patients in remission, those who expressed a greater interest in treatment participation were also less likely to practice maladaptive coping. Our data demonstrate that a more active coping style may be associated with improved health outcome. Compared to patients with active disease, patients in remission are more likely to employ task oriented coping, demonstrate a higher interest in treatment participation, report greater perceived

⁎ Corresponding author at: Rush University Medical Center, Rush University Gastroenterologists 1725 W. Harrison Street Suite 207 Chicago, IL 60612. Tel.: 312-563-3898; Fax: 312-563-3883. E-mail address: [email protected] (S. Jedel). 1873-9946/$ - see front matter © 2013 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved. http://dx.doi.org/10.1016/j.crohns.2013.10.005

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S. Gandhi et al. control of their health, and exhibit less depression symptoms. Our findings may increase awareness of the importance of identifying coping strategies for IBD patients, including those in remission. © 2013 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.

1. Introduction Inflammatory bowel disease (IBD), which includes both Crohn's disease (CD) and ulcerative colitis (UC), is a chronic and relapsing illness with episodes of symptomatic flare-ups and periods of asymptomatic remission. Many IBD patients suffer from stress and psychological symptoms related to both their chronic disease and their daily treatment regimen that may negatively impact their coping skills as well as their quality of life, even during remission.1,2 Gaining a better understanding of these psychological confounders could potentially provide therapeutic targets to optimize disease management. Patient characteristics such as coping style, health competence, and degree of interest in treatment involvement, could play an important role in predicting health outcomes. Coping, defined as an individual's varied intellectual and behavioral responses to stress,3 is predictive of quality of life and health perceptions among patients with chronic illnesses.4,5 Among coping styles, task-oriented coping (including seeking information, planning, taking action) is typically considered ‘adaptive,’ compared to, emotion-oriented coping (such as emotional outbursts or fantasy) and avoidance coping (avoiding the problem through social diversion or distraction) which are ‘maladaptive’.6 However, the literature on IBD and coping is limited. Moreover, the relationship between disease activity and coping in IBD is not well established and coping strategies may differ depending on whether patients are symptomatic (experiencing flare-up) or in remission.7 Perceived health competence (PHC), or the degree to which patients feel they can effectively manage their health outcomes, might also impact IBD quality of life in IBD patients. High levels of PHC are associated with more favorable health behaviors.8 In a sample of cancer patients, PHC was the strongest predictor of better psychological functioning.9 Patients' beliefs about their health and their role in health care have been associated with important health outcomes and quality of life in IBD patients.10 A patient's level of perceived health competence may be related to coping style. Studies have shown that IBD patients most commonly coped with their illness by trying to maintain a ‘sense of control’.11,12 However, perceived health competence and its relationship to coping styles and disease activity have not been well explored in an IBD population. The degree to which patients prefer to participate in their medical care is an additional psychosocial factor that may relate to quality of life. Greater participation in care and in making health decisions increases the likelihood that patients will be adherent to certain health behaviors and will engage in other health-promoting or health maintaining behaviors.13 Thus, higher perceived health competence and greater interest in participation in treatment could facilitate more adaptive coping with IBD, although this relationship has not been directly tested.

To our knowledge, no studies have investigated how IBD disease activity may be associated with coping styles, perceived health competence, or preference for involvement in treatment. Moreover, there is very little in the literature assessing psychosocial factors among inactive IBD patients despite the fact that many IBD patients have less than optimal quality of life even when disease activity is low.10 Indeed, depression and anxiety are significantly higher in inactive patients, compared to healthy controls.14 Thus, psychosocial factors may be highly influential in how patients cope with IBD,15 yet limited data are available on the relationship between psychosocial factors and quality of life among patients with inactive disease. In order to fill this gap, we investigated: (a) the relationship between disease activity and multiple psychosocial factors, including coping style, perceived health competence, preference for involvement in treatment, depression and quality of life, (b) the relationship between coping style and number flares over the past year among inactive patients, and (c) the association between coping style and interest in participation in treatment among inactive IBD patients.

2. Methods 2.1. Participants Patients (ages 18–70) with an established diagnosis of ulcerative colitis or Crohn's disease, based on clinical, serological, and endoscopic findings, were included. Patients were recruited from the GI/IBD and infusion clinics at Rush University Medical Center during a regularly scheduled visit to complete self-report questionnaires. The study was approved by the Institutional Review Board of Rush University Medical Center.

2.2. Demographic data Data were collected from participants regarding age, gender, ethnicity, marital status, work status, age at diagnosis of IBD, and self reported number of IBD flares over the past year.

2.3. Measures 2.3.1. Harvey Bradshaw Index16 and Harvey Bradshaw Index (modified)17,18 The Harvey Bradshaw Index is a self-report, disease activity index originally used to quantify the symptoms of patients with Crohn's disease over the past twenty-four hours. Disease activity is calculated according to the general well-being, abdominal pain, abdominal mass, number of liquid stools per day and, for patients with Crohn's disease, the presence of extra-intestinal symptoms (arthritis,

Relationship between coping, health competence and patient participation erythema nodosum, oral ulcerations, pyoderma gangrenosum, uveitis, fistula, abcess or fissure). The Harvey Bradshaw Index, which has been modified for use with patients with Ulcerative Colitis17–20 was used in the current study for UC patients. Patients with a score of ≥ 5 were classified as active (i.e., flare-up) while those with scores of 4 or lower were considered inactive.

2.3.2. Inflammatory Bowel Disease Quality of Life Questionnaire [IBDQ]21 The IBDQ is a 32-item, disease-specific questionnaire that measures health-related quality of life in IBD patients. The questionnaire has 4 domains: bowel symptoms, systemic symptoms, emotional factors and social factors, and uses a 7-point Likert scale ranging from 1 (worst of health) to 7 (best of health). Scores range from 32 to 224, with higher scores representing better quality of life. When compared with healthy controls, IBD patients reported significantly reduced quality of life across all 4 domains.22,23

Table 1

Sample characteristics.

Demographic/disease characteristic

M (SD) or N(%)

Age Gender Male Female Ethnicity/race Asian Black or African American Native Hawaiian or Pacific Islander White Marital status Married Single Divorced or legally separated Widowed Work status Full time Part time Unemployed, retired, or homemaker Student Disability Age at diagnosis (years) Flare-ups in the past year Disease type and activity Crohn's (HBI) Active Inactive Ulcerative colitis (modified HBI) Active Inactive Current or past medication usage Immunomodulators Yes No Biologics Yes No

43.26 (16.50) 29 (41%) 41 (59%) 3 (4%) 15 (21%) 1 (2%) 51 (73%) 33 (48%) 28 (41%) 7 (10%) 1 (1%) 37 (53%) 6 (8%) 17 (25%) 6 (8%) 4 (6%) 32.29 (15.61) 1.33 (2.14) 44 (69%) 14 (22%) 30 (47%) 20 (31%) 4 (6%) 16 (25%)

47 (67%) 23 (33%) 63 (90%) 7 (10%)

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2.3.3. Beck Depression Inventory [BDI]24 The BDI, an established self-report tool for screening depression, includes 21 items, each comprising 4 selfdescriptive statements, which the subject rates on a 4-point scale of severity. Interpretation is based on a 0–63 total score. Test–retest reliability is N 0.90.24 Spearman–Brown reliability is 0.93, and internal consistency for test items is 0.86.25 2.3.4. Perceived Health Competence Scale [PHCS]26 The PHCS is a domain-specific, validated scale that examines the degree to which an individual perceives his/her ability to effectively manage his/her own health outcomes. Eight questions are rated on a 5 point Likert scale ranging from strongly disagree to strongly agree. 2.3.5. Coping Inventory for Stressful Situations [CISS]27 The CISS is a validated measure of the following styles of coping: emotion-oriented, task-oriented, and avoidanceoriented. Scoring high on the task-oriented coping measure indicates a higher likelihood of using behavioral or cognitive problem-solving techniques in a stressful situation. Emotion oriented copers respond to stressful situations with emotional outbursts, self-preoccupation, or fantasy. Avoidance coping is measured as a total scale score and is additionally subdivided into two subscales: reliance on social support (social diversion) or use of distraction (turning to other activities that serve to keep the individual from addressing the stressful situation). 2.3.6. Complementary and Alternative Medicine Beliefs Inventory [CAMBI]28 The CAMBI is a validated measure of three aspects of CAM-related treatment beliefs: beliefs in natural treatments, preference for participation in treatment, and

Table 2 status.

Differences in psychosocial functioning by disease

CAMBI-2 PHCS BDI CISS Task Oriented CISS Emotion Oriented CISS Avoidance CISS Distraction CISS Social Diversion IBDQ Bowel IBDQ Emotion IBDQ Systemic IBDQ Social IBDQ total score

Active (N = 18)

Inactive (N = 43)

M (SD)

M (SD)

p-Value

25.7 (5.5) 22.7 (2.5) 16.4 (9.9) 52.4 (14.5) 41.8 (17.2)

28.3 26.0 6.4 61.4 40.4

0.049 0.001 b 0.001 0.02 0.72

46.6 (10.30) 23.5 (5.3) 14.6 (5.1)

45.9 (12.8) 22.1 (6.6) 15.5 (5.0)

41.9 (11.4) 49.7 (13.8) 16.9 (3.2) 4.1 (1.7) 129.9 (31.1)

57.0 63.9 22.8 6.2 173.7

(3.9) (3.6) (6.0) (11.5) (11.0)

(9.9) (8.7) (4.5) (1.1) (26.7)

0.83 0.42 0.49 b 0.001 b 0.001 b 0.001 b 0.001 b 0.001

Note: CAMBI-2 = Interest in Participation in Treatment scale of the Complementary and Alternative Medicine Beliefs Inventory, PHCS = Perceived Health Competence Scale, BDI = Beck Depression Inventory, CISS = Coping Inventory for Stressful Situations, IBDQ = Inflammatory Bowel Disease Quality of Life Questionnaire.

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S. Gandhi et al.

a) Association between Task-Oriented

b) Association between Emotion-Oriented

coping and Number of Flares

coping and Number of Flares

50 50 40

Number of Flares

Number of Flares

40 30

20

10

30

20

10

0

0 20.00

40.00

60.00

80.00

20.00

30.00

Task-Oriented Coping score

40

40

Number of Flares

50

30

20

20

10

0

0 50.00

40.00

60.00

5.00

70.00

10.00

Avoidance Coping score

15.00

20.00

25.00

Distraction Coping score

e) Association between Social Diversion coping and Number of Flares 50

40

30

20

10

0 5.00

70.00

30

10

Number of Flares

Number of Flares

50

30.00

60.00

coping and Number of Flares

coping and Number of Flares

20.00

50.00

d) Association between Distraction-Oriented

c) Association between Avoidance-Oriented

10.00

40.00

Emotion Oriented Coping score

10.00

15.00

20.00

Socila Diversion Coping score

25.00

30.00

35.00

Relationship between coping, health competence and patient participation Table 3 Correlations between interest in participation in treatment and coping styles in inactive patients. Coping Strategy

Pearson r

p-Value

Task Oriented Emotion Oriented Avoidance Distraction Social Diversion

− .12 − .14 − .44 − .41 − .41

0.49 0.42 0.005 0.008 0.008

holistic health and treatments. The second subscale of the CAMBI (preference for participation in treatment, CAMBI-2) assesses the perceived importance of patient participation in treatment and being involved in decision making. This subscale is comprised of 5 questions and is scored on a 7-point Likert-type response scale. Higher scores on the CAMBI-2 subscale indicate a greater preference for patient participation in treatment.

2.4. Statistics Data analyses were conducted using SPSS version 17.0 with a significance level of p b .05. Means and standard deviations were calculated to describe the sample. Independent sample t-test comparisons were used to compare psychosocial functioning variables between patients with active versus inactive disease. Pearson's r correlations were used to determine the strength and direction of associations between coping styles and 1) self-reported number of IBD flares over the past year and 2) patient preference for involvement in treatment in inactive patients.

3. Results All eligible patients were asked to participate and patients were recruited from both the infusion clinic and the IBD clinic. Eighty-five patients were approached and seventy participants completed the study questionnaires. Fifteen patients, or 18% (6 from the infusion clinic and 9 from the IBD clinic) refused to participate. Demographic and clinical data are shown in Table 1. Two thirds of patients were Caucasian and 59% were female. Study subjects had a mean age of 43 years. Patients had been diagnosed with IBD at a mean of 32 years of age, with an average duration of disease of 10.6 years. Most were either currently taking or had taken immunomodulators (67%) or biologics (90%). Duration of disease ranged from less than one year to 42 years. The majority of patients were in remission, as measured by the HBI (n = 70%), and 68% of the sample (n = 44) had Crohn's disease.

405

3.1. Psychosocial functioning by IBD disease activity status Differences in psychosocial functioning by disease status are presented in Table 2. Patients with inactive IBD had significantly more interest in participating in their treatment (p b .05), demonstrated more perceived health competence (p = .001), had less depressive symptomatology (p b .001), used more task oriented coping (p = .02), and had better IBD-related quality of life (in all measured areas of functioning) than those with active disease. No differences were found in use of emotion oriented, avoidance, distraction, or social diversion coping strategies by disease activity status.

3.2. Associations between coping styles and reported symptomatic IBD flares Only Task Oriented Coping was significantly negatively associated with number of IBD flares (Fig. 1a–e).

3.3. Associations between coping styles and interest in participating in medical treatment The CAMBI-2 was significantly negatively associated with use of Avoidance, Distraction, and Social Diversion coping strategies, and was not significantly associated with use of Task Oriented or Emotion Oriented strategies (Table 3).

4. Discussion This is the first study to examine the association between disease activity, perceived health competence, quality of life, and the patient's level of interest in involvement in treatment in an IBD population. Among patients with inactive disease, those who expressed a greater interest in participation in treatment (as measured by the CAMBI-2) were also less likely to practice maladaptive coping strategies, such as avoidance. This finding is consistent with data from a study on coping11 and IBD patients, suggesting that having good relationships with health professionals was associated with more effective coping. Our data demonstrate that having a more active style of coping is also correlated with improved health outcomes. That is, among inactive patients, those who practiced more task oriented coping (such as problem solving, taking action) also demonstrated fewer self-reported IBD flares. Likewise, they demonstrated a greater preference for taking a more active role in their treatment, as compared to patients with active disease. These findings suggest that a proactive, “problem-solving” approach toward stressors may be beneficial in those with disease remission/inactivity. Shared medical decision making between patients and physicians has been previously well described in the setting of chronic illness, and patient participation in decisions has been shown to lead to measureable improvements in the quality of

Figure 1 a–e. Associations between coping styles and IBD flares. a. Association between Task-Oriented coping and Number of Flares. b. Association between Emotion-Oriented coping and Number of Flares. c. Association between Avoidance-Oriented coping and Number of Flares. d. Association between Distraction-Oriented coping and Number of Flares. e. Association between Social Diversion coping and Number of Flares.

406 life and physiological markers of disease control.29 Therefore, allowing the opportunity for patients to be involved in treatment decisions may translate to an impactful difference in outcomes and better patient satisfaction.30 Specific medical conditions have also been related to the type of involvement a patient desires. Elkin et al.31 found that patients with metastatic colorectal cancer were much more likely to prefer a passive role in the treatment decision-making process. In our study, there was no significant trend of preference for involvement in treatment among patients with active disease. Considering the state of IBD disease activity may be an important factor in understanding the role of shared decision making when discussing treatment options with patients. There is data to support the idea that patients often do not achieve the decision-making roles they desire,32 which emphasizes the importance of incorporating this into clinical care. Data from this study also demonstrate several potentially clinically significant differences in psychological functioning between inactive and active populations. In comparison to patients with active disease, patients with inactive disease were more likely to employ task oriented coping strategies, demonstrate a higher interest in participation in their treatment, report a higher sense of perceived control of their health, and also exhibit lower levels of depression. Our findings highlight how important it is for patients, particularly those who are inactive, to feel “in control” of their disease course. Since one of the most common concerns among all IBD patients is the uncertainty of their future disease course,33 it follows that having a sense of control may have a greater impact in those in remission; while those with active disease have a more pressing concern to get their symptoms controlled. When patients feel in control, their subjective well-being may also be better. For example, in a study looking at illness perceptions of IBD patients, those who felt in control of their illness also reported better general bowel function and better social function. In contrast, those who reported feeling little control over their illness reported more depression.10 These authors also found that perception of control over IBD or the belief that treatment would help control symptoms of the disease was associated with a better quality of life.10 In this study, however, current disease activity was not assessed. In another study of adjustment and IBD, disease activity was stratified, and having a feeling of ‘personal control’ was found to be significantly greater among IBD patients in remission compared to patients who were flaring. Our finding that patients in remission have a higher desire to actively participate in their treatment may be consistent with an attitude of “empowerment” and this feeling may have contributed to our observed higher quality of life in these patients. In contrast, patients with active disease may feel less control, and might defer to a health care professional for decisions regarding treatment during a flare-up. Moreover, patients who are flaring also demonstrate significantly higher levels of anxiety, depression and perceived stress,14,34 which may also contribute to their being less participatory in decision-making with their physician. This knowledge can be helpful to a health care provider in setting expectations in the patient–physician relationship, and in encouraging patients to participate in medical decision making early on. Health care providers may appropriately expect more ‘problem-solving’ behavior from their inactive IBD patients, but know that during times of flare-ups there may be less patient input.

S. Gandhi et al. Our findings regarding the relationship between coping style and disease activity are novel. Previous investigators found that patients with active IBD were most likely to practice avoidant coping as compared to non-IBD community peers.14 However, we were more interested in the coping strategies of the inactive disease population. In our study sample, patients with inactive disease practiced more task oriented coping than those with active disease. This type of coping style may be protective in helping to maintain good quality of life for this population. In fact, in a population of patients with Crohn's disease in remission, there was a lower risk of relapse in those patients that did not practice avoidance coping, reflecting the importance of active coping styles among those with inactive disease.35 Conversely, Petrak and colleagues have found that IBD patients with active disease who practiced task oriented coping actually had a decline in their physical quality of life.36 The authors hypothesized that during a time of disease activity, it was not advantageous to ‘waste’ energy actively coping with illness.36 It may be that, similar to patients with other chronic illnesses, IBD patients use task oriented coping because it enables them to successfully adjust to a chronic illness.3 Turnbull and Vallis found that effective coping was positively associated with quality of life (emotional, physical and social functioning), and effective coping also increased perception of well-being.37 This further underscores the relationship between coping style and patients' beliefs regarding their subjective well-being. Our study found higher levels of depression among patients with active disease than inactive disease, which is consistent with the findings of previous studies.38–40 Interestingly, with a marker such as depression, it is unclear whether the symptoms are secondary to the stress of higher disease activity or a contributing factor that actually worsens disease activity. Caprilli et al. found that stressors like anxiety and depression can influence the course of IBD and represent a risk factor for relapse of disease.41 Regardless, depression negatively impacts quality of life and thus should be assessed and treated in patients with IBD. In the present study, quality of life among inactive IBD patients was also significantly higher compared to those with active disease, in all 4 IBD-related areas of quality of life. These findings are consistent with the prior studies comparing patients with active versus inactive disease.22,23 There are several limitations in our study. One limitation is the small sample of patients when stratified by disease activity. For this reason, it was not possible to make correlations within the subsets of Crohn's disease and ulcerative colitis. Another limitation is that our study design is cross-sectional and thus coping methods were assessed at only one point in time, rather than over an extended time period, limiting our ability to determine whether a given patient would change her/his coping styles during transitions from active to inactive disease or over time. It is possible that coping behavior would change as a function of disease activity, as would their perceived control of disease. Another limitation is that all data are self reported, including disease activity. However, many large-scale IBD studies have also relied on self reported disease activity measures.35,14 Finally, our sample is primarily comprised of patients on biologics, thus our results may be more relevant for those IBD patients with more severe disease that requires biologics.

Relationship between coping, health competence and patient participation Our findings are clinically important for health care providers managing patients with IBD. Specifically, gastroenterologists may consider having patients perform a self-assessment of disease activity as well as coping styles during all clinic visits in order to implement therapeutic strategies to improve patient coping. Since coping styles were shown to differ by whether the patient's IBD was active or inactive, such data could provide the clinical practitioner with information regarding how much involvement the patient may desire in a particular office visit. In addition, coping styles may be prognostic of potential disease activity. It may also prompt referrals for those patients who have maladaptive coping skills to a mental health care provider to learn more effective coping strategies. Future longitudinal studies are required to assess these psychological functioning measures over multiple points in time. The impact of correcting maladaptive strategies on disease course and quality of life could then be measured to monitor outcomes.

Conflict of interest None.

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