Simon Knowles, PhD

Jane M. Andrews, MBBS, PhD, FRACP

Anna Porter, BAgrEcon (Hons)

Predictors of Impaired Mental Health and

Support Seeking in Adults With
Inflammatory Bowel Disease
An Online Survey

ABSTRACT
This study explored the possible factors associated with psychological distress in adults with inflammatory bowel dis-
ease (IBD) and also engagement in mental health services (MHS) in those reporting distress in a large Australian co-
hort. Participants with IBD completed an online survey assessing perceived IBD activity (Manitoba Index; MI), mental
health status (K10), demographic details, and engagement with MHS for IBD-associated issues. Of 336 participants,
76.5% perceived themselves as having active disease over the past 6 months, and on K10 scores, 51.8% had a men-
tal health issue. Of participants with a mental health issue, only 21.3% were currently receiving mental health support.
A stepwise logistic regression analysis correctly classified 78.7% of the status of receiving mental health support, with
lower income (<$60,000 per annum) the only significant predictor. Paradoxically, the degree of psychological dis-
tress did not correlate with seeking mental health support. The data show that in individuals with ongoing symptoms
attributed to active IBD, mental health issues are highly prevalent, with older age and higher income being additional
drivers of mental health issues. The greater challenge, however, seems not to be identifying mental health issues, but
in getting those in need to engage in MHS.

I
nflammatory bowel disease (IBD) is well docu- also accepted that psychological distress tends to
mented to be associated with mental health co-occur with clinically increased IBD activity
comorbidities ( Mikocka-Walus, Turnbull, (Addolorato, Capristo, Stefanini, & Gasbarrini, 1997;
Andrews, Moulding, Wilson, et al., 2008). It is Andrews, Barczak, & Allan, 1987; Bennebroek Evertsz
et al., 2012; Graff, Walker, & Bernstein, 2009;
Received October 17, 2015; accepted February 19, 2016. Knowles, Wilson, Connell, & Kamm, 2011; Mikocka-
About the authors: Simon Knowles, PhD, is with Faculty of Health, Arts Walus et al., 2007) and that this is associated with
and Design, Swinburne University of Technology, Department of
reduced perceived quality of life (Graff, Walker, &
Gastroenterology, Royal Melbourne Hospital, and Department of
Psychiatry, The Melbourne University, Melbourne, Victoria, Australia. Bernstein, 2009). Cohorts with IBD have also been
Jane M. Andrews, MBBS, PhD, FRACP, is Consultant Gastroenterologist, found to experience reduced self-esteem, increased
Head IBD Service & Education, Department of Gastroenterology & body image concerns, and increased sexual problems
Hepatology, Royal Adelaide Hospital, South Australia, Australia. (Casati, Toner, de Rooy, Drossman, & Maunder, 2000;
Anna Porter, BAgrEcon (Hons), is Market Access Manager, AbbVie, Joachim & Milne, 1987; Maunder, Toner, de Rooy, &
Mascot, New South Wales, Australia.
Moskovitz, 1999; Muller, Prosser, Bampton,
The authors declare no conflicts of interest.
Mountifield, & Andrews, 2010). More recently,
This study was completed on behalf of AbbVie Australia, Crohn’s &
research has suggested that this effect may be bidirec-
Colitis Australia, IBD Support Australia, the Australian Inflammatory
Bowel Disease Association, The Gutsy Group, and The Gut Foundation. tional and that ongoing psychological distress may
Participants in this study completed an online survey that was advertised lead to increased IBD activity (Mittermaier et al.,
via Australian IBD support organizations, IBD-related electronic forums, 2004; Moser, 2006; Porcelli, Zaka, Centonze, & Sisto,
and social media.
1994) and increased risk of flares (Mardini, Kip, &
Correspondence to: Simon Knowles, PhD, Swinburne University of
Technology, P.O. Box 218, Hawthorn 3122, Melbourne, Victoria, Wilson, 2004; Mittermaier et al., 2004; Persoons et al.,
Australia (sknowles@[Link]). 2005). Because of these concerns regarding psycho-
DOI: 10.1097/SGA.0000000000000251 logical comorbidity within IBD cohorts, multiple

38 Copyright © 2018 Society of Gastroenterology Nurses and Associates Gastroenterology Nursing

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 IBD and Mental Health Status

experts have recommended that IBD cohorts be regu- as having either an anxiety and/or depressive disorder,
larly screened for mental health issues or that mental only 17 (21%) reported currently seeking mental health
health services (MHS) should be embedded within IBD support. This surprising finding has not yet been con-
outpatient services (Andrews, Mountifield, Van firmed in larger cohorts.
Langenberg, Bampton, & Holtmann, 2010; Bennebroek It is thus clear that psychological distress co-occurs
Evertsz et al., 2012; Guthrie et al., 2002; Knowles with IBD and tends to be more severe in active disease
et al., 2011; Mikocka-Walus et al., 2009). However, states. However, there is limited knowledge of the
this rarely happens in standard IBD practice, due to extent to which demographic, disease, and mental
resource constraints. health characteristics might influence this, and even
less known about the rates of MHS engagement in IBD
Background cohorts and whether any factors appear to predict this.
Rates of mental health issues in IBD cohorts have com- This study therefore aimed to answer two questions:
monly been reported using rates of anxiety and/or (1) To what extent do demographic and disease char-
depression. Guthrie et al. (2002) and Bennebroek acteristics predict having a mental health issue? and (2)
Evertsz et al. (2012) reported the probable prevalence Of those with a mental health issue, do demographic
rate for an IBD patient having either anxiety and/or and/or disease characteristics, and/or degree of psycho-
depression as 47.4% and 43%, respectively. Rates of logical distress predict engagement in MHS? It was
mild/probable depression in IBD cohorts have been hypothesized that (1) greater perceived IBD severity
reported to range between 7% and 18% (Miehsler would be associated with higher psychological distress
et al., 2008; Simren et al., 2002) and certain depression and (2) greater psychological distress would be associ-
cases range from 2% to 7% (Miehsler et al., 2008; ated with greater engagement in MHS.
Simren et al., 2002). As for anxiety, several studies
have reported that the rates of probable anxiety cases Patients and Methods
ranged from 14% to 56% (Bryant, van Langenberg,
Holtmann, & Andrews, 2011; Hardt et al., 2010; Participants
Iglesias et al., 2009; Lima et al., 2012; Miehsler et al., Of 552 participants who began the survey, 336 partici-
2008; Nordin, Pahlman, Larsson, Sundberg-Hjelm, & pants provided usable data (273 females; 232 with
Loof, 2002; Simren et al., 2002) with certain anxiety Crohn disease) by completing the online survey (61%
ranging between 12% and 18% (Miehsler et al., 2008; completion rate). Their mean age was 37.4 (SD =
Simren et al., 2002). Research has also identified that 11.5) years and mean age at diagnosis was 26.3 (SD =
rates of distress in IBD cohorts tend to be higher in 9.7) years. Based on the Manitoba index (MI), 76.5%
patients with active disease versus nonactive disease perceived themselves as experiencing active disease.
(Addolorato et al., 1997; Andrews et al., 1987; Most (69.3%) reported being married or de facto part-
Bennebroek Evertsz et al., 2012), although this is not nered, 48.8% had or were undertaking a university
always found (Mikocka-Walus, Turnbull, Moulding, degree, and 37.5% were earning more than
et al., 2008; Nordin et al., 2002). AUS$100,000 per year (Table 1).
Recent studies have explored the prevalence of psy-
chological comorbidity in people with IBD in Australian Disease Assessment and Questionnaires
cohorts (Knowles et al., 2011; Mikocka-Walus,
Turnbull, Andrews, Moulding, Wilson, et al., 2008). The Manitoba Index (MI; Clara et al., 2009)
For example, Mikocka-Walus, Turnbull, Andrews, The MI is a single-item assessment of patient-perceived
Moulding, Wilson, et al. (2008) found that of 64 indi- IBD activity. Individuals are asked, “In the past
viduals (including 36% with currently active disease) 6 months, my disease has been: (a) Constantly active,
attending a metropolitan IBD outpatient service, 37% giving me symptoms every day; (b) Often active, giving
experienced anxiety, while 11% were experiencing me symptoms most days; (c) Sometimes active, giving
depression. Based on a sample of 96 patients with me symptoms on some days (for instance 1–2 days/
Crohn disease (including 46% with active disease) week); (d) Occasionally active, giving me symptoms
attending an IBD outpatient clinic, Knowles et al. 1–2 days/month; (e) Rarely active, giving me symp-
(2011) found that 44% met the criteria for depression toms on a few days in the past 6 months; and (f) I was
and 65% met the criteria for anxiety. However, as these well in the past 6 months, what I consider a remission
studies were small, they are unable to provide robust or absence of symptoms.” The MI has been found to
data as to whether demographic or factors other than have excellent sensitivity when compared to standard
disease activity are associated with mental health issues. Crohn disease (Harvey–Bradshaw Index) and ulcera-
Furthermore, unpublished data (S.K.) involving 81 IBD tive colitis (Powell–Tucker Index) disease activity
outpatients found that while 31 (38%) were identified measures and test–retest reliability (Clara et al., 2009).

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IBD and Mental Health Status

the scoring categories used as part of the Australian

TABLE 1. Sociodemographic and Clinical
Participant Characteristics general practitioner Mental Health Care Plan screening
(Australian Bureau of Statistics [ABS], 2012) where
N %
individuals are classified as: likely to be well (10–19),
Gender likely to have a mild mental disorder (20–24), likely to
Male 63 18.8 have a moderate mental disorder (25–29), and likely to
have a severe mental disorder (30–50). For the purpose
Female 273 81.3 of this study, individuals were classified with having a
Highest education mental health issue if they scored 20–50.
The K10 has been found to have excellent sensitivity
Primary/high school 71 21.1
compared to other psychological distress measures and
TAFE/certificate 101 30.1 utilized in several national surveys, including in Australia
University 164 48.8 (Kessler et al., 2002, 2003, 2007, 2009, 2010; Kessler,
Chiu, Demler, Merikangas, & Walters, 2005). A nation-
Relationship status
al survey of 20,500 Australians (the 2011–12 Australian
Married or with partner 233 69.3 Health Survey; ABS, 2012) using the K10 identified that
Single 103 30.7
70.1% had low levels of psychological distress (score of
10–15, classified as likely to be well), and 18.4% had
Have dependents moderate levels of psychological distress (score of
Yes 120 35.7 16–21, classified as likely to be well or have a mild men-
tal disorder). High or very high levels of psychological
No 216 64.3
distress (score of 22–50, classified as likely to have a
Income (AUD) mild, moderate, or severe mental disorder) were experi-
≤$60,000 106 31.5 enced by 10.8% of the population, with females more
likely to experience distress than males.
$60,001– $100,000 104 31.0
≥$100,001 126 37.5 Methods
This study was a cross-sectional, online survey of par-
Disease type
ticipants living with IBD. The “Own Your IBD” semi-
Crohn disease 232 69.0 quantitative questionnaire was developed by a work-
Ulcerative colitis 104 31.0 ing group consisting of 15 representatives from the
IBD community in Australia, including advocacy
Note. TAFE = technical and further education (Australia).
groups, clinicians, psychologists, nurses, pharmacists,
researchers, and people living with IBD. The content of
In line with previous publications by the Manitoba the survey was developed during two working group
group (Bernstein et al., 2010; Graff, Walker, Clara, et meetings and was also reviewed by a delegate from the
al., 2009; Rawsthorne et al., 2012; Singh et al., 2011) Council of the Gastroenterology Society of Australia
in our analysis, active IBD was defined as reporting and the Australian Inflammatory Bowel Disease
symptoms on the MI from “constantly” (a) to “occa- Association (JMA). The final content of the survey was
sionally” (d), and inactive (remission) disease activity approved by consensus. The final questionnaire con-
“rarely” (e) and “well in the last 6 months” (f). sisted of 65 questions related to perceived IBD activity
(Manitoba Index; MI), mental health status (K10),
Psychological Distress (K10; Kessler et al., demographic details, and history of engagement with
2002) MHS associated with IBD. The dissemination of the
The K10 is a 10-item global measure of psychological survey was conducted by an independent research con-
distress using questions assessing anxiety and depres- sultancy (StollzNow Research) supported by Crohn’s
sion symptoms. Individuals are asked to rate the level and Colitis Australia, IBD Support Australia, and The
of symptom frequency over a period of 30 days. For Gut Foundation. Funding for the survey was support-
example, “During the last 30 days, about how often did ed by AbbVie Australia.
you feel tired out for no good reason? None of the time,
Some of the time, Most of the time, or All of the time.” Statistical Analyses
Items are then summed to prove a range of 10–50, with Correlational analyses were undertaken to explore the
higher score indicating greater psychological distress. relationships between psychological distress, mental
The K10 has no universally agreed groupings; however, health status, and demographic and disease character-
for the purpose of this study, we will be consistent with istics. Standard (providing a full model) and stepwise

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 IBD and Mental Health Status

(providing a parsimonious model) logistic regression (76.5%) were therefore categorized as having currently
(LR) analyses were conducted to explore whether active IBD. Review of the K10 psychological distress
demographic and disease characteristics predicted a scores indicated that 162 individuals (48.2%) were
mental health issue (‘No’ or ‘Yes’). Demographic vari- healthy (K10 score 10–19) while 52 (15.5%), 51
ables were entered in the first step (Step 1), allowing (15.2%), and 71 (21.1%) had mild (K10 score 20–24),
them to be accounted independently prior to the inclu- moderate (25–29), or severe (30–50) levels of psycho-
sion of disease characteristics. A second series of LRs logical distress, respectively. Therefore, within this sam-
was undertaken to explore whether demographic, dis- ple, 174 participants (51.8%) were identified as having
ease characteristics, and psychological distress pre- a current mental health issue (as defined by a K10 score
dicted engagement in MHS (‘No’ or ‘Yes’). Consistent of 20–50). Yet, of the 174 participants with a current
with the previous analyses, demographic variables mental health issue, only 37 (21.3%) were currently
were entered in the first step (Step 1), allowing them to receiving mental health support.
be accounted independently prior to the inclusion of
disease characteristics and psychological distress. Psychological Distress
Based on the total sample (N = 336), increased psy-
Procedures chological distress was significantly associated with
Participants were sought by a number of different being younger, having a lower income, having increased
methods, including advertising via Australian IBD sup- perceived IBD activity, and having increased engage-
port organizations, IBD-related electronic forums, and ment in MHS (Table 2). Similarly, those identified with
social media between October and November 2013. having a mental health issue were likely to report being
Inclusion criteria were as follows: individuals self- younger, having a lower income, and an increased per-
identifying as diagnosis of IBD, reported age greater ceived IBD activity. When considering only those
than 18 years, and able/willing to complete the ques- reporting a mental health issue (N = 174), greater
tionnaire. Ethical approval to conduct this research psychological distress was associated with having a
was attained from Bellberry Limited Human Ethics lower income. There was no significant association
Research Committees. between the severity of psychological distress and
engagement in MHS.
Results
Review of participants’ perceived disease status indicated Predictors of Mental Health Issues
that 80 individuals (23.8%) reported “constantly active” To identify which factors predicted a mental health
symptoms, 78 (23.2%) reported symptoms to be “often issue (‘No’ or ‘Yes’; Yes defined by a K10 score of >20)
active,” 60 (17.9%) “sometime active,” 39 (11.6%) and the percentage of correct classification, a series of
“occasionally active,” 31 (9.2%) “rarely active,” and LRs was conducted (Table 3). The first LR included
only 48 (14.3%) identified themselves being in remis- demographic factors (age, gender, education, income,
sion. According to the MI scoring, 257 individuals relationship status, household status) in Step 1 and then

TABLE 2. Correlations Between Psychological Distress, Demographic Features, and Disease

Characteristics (Using Total Sample and Only Participants With a Mental Health Issue)
Total Sample Participants With a Mental Health
Issue (K10 score 20–50) (N = 174),
K10 MH Issue (0 = No, 1 = Yes) K10
Age −0.17** −0.17** −0.03

Gender 0.59 0.6 −0.03

Education −1.08* −0.08 −0.05
Income −0.28*** −0.20*** −0.25**
Relationship status 0.17* 0.14* 0.11
MI −0.32*** −0.34*** −0.08
Age at diagnosis −0.4 −0.02 −0.04
Engagement in MH services 0.21*** 0.81*** 0.05
Note. MH = mental health; MI = Manitoba Index score.
*p < .05. **p < .01. ***p < .001.

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IBD and Mental Health Status

disease characteristics (perceived disease activity, dis- psychological distress (52%) and more than three
ease type, age at diagnosis, other family with IBD, and quarters (77%) have ongoing symptoms that they
extended family with IBD) in Step 2. The final model attribute to active IBD. However, despite this very
was found to correctly classify 67.3% of participants, clear need for targeted mental health input, only 37
with only income and perceived disease activity signifi- people reported accessing MHS—less than one quarter
cant predictors. A second LR using a stepwise method (21%) of those with psychological distress.
was able to correctly classify 66.4% using only three Consistent with past research and the first hypoth-
significant predictors: age, income, and perceived dis- esis, greater perceived IBD activity was indeed associ-
ease activity. ated with increased psychological distress (Addolorato
et al., 1997; Andrews et al., 1987; Bennebroek Evertsz
Predictors of Engagement in MHS et al., 2012; Graff, Walker, & Bernstein, 2009; Knowles
Considering only those participants classified as having et al., 2011; Mikocka-Walus et al., 2007). LR analysis
a mental health issue (N = 174), the next series of LRs resulted in 67.3% of individuals being correctly classi-
was used to identify which factors predicted engage- fied (as having or not having a mental health issue) and
ment in MHS (‘No’ or ‘Yes’) and the percentage of only income and perceived disease activity were signifi-
correct classification (Table 4). Demographic factors, cant predictors. This suggests that individuals with a
disease characteristics, and psychological distress were lower income and increased perceived disease activity
entered in Steps 1, 2, and 3, respectively. The final were at an increased risk of developing a mental health
model was found to correctly classify 78.2% of partici- issue. Stepwise LR analysis also identified (younger)
pants, with only low income being a significant predic- age as a predictor of having a mental health issue,
tor. A second LR using a stepwise method was able to which suggests that as individuals age, mental health
correctly classify 78.7% using income as the predictor. issues become less prominent, perhaps through accept-
ance or developing coping skills.
Discussion In contrast, our second hypothesis—that greater
In this large Australian online IBD cohort, more than psychological distress would be associated with greater
half of the respondents have current clinically relevant engagement in MHS—was not supported by the

TABLE 3. Logistic Regression Modelling Evaluating Predicting Mental Health Status

Classification Based on Demographic and Disease Characteristics
Mental Health Issue (0 = No, 1 = Yes)
Enter Stepwise
B OR 95% CI p B OR 95% CI p
Step 1
Age −0.03 0.98 0.98–0.95 .08 −0.02 0.96 0.96–1.00 .03*
Gender 0.15 1.16 0.62–2.16 .65
Education −0.15 0.86 0.63–1.17 .34
Income −0.46 0.63 0.45–0.88 .01** −0.56 0.43 0.43–0.77 .00***

Relationship 0.27 1.31 0.71–2.4 .40

Household 0.09 1.10 0.93–1.3 .29
Step 2
Perceived disease activity −0.40 0.67 0.58–0.78 .00*** −0.40 0.58 0.58–0.78 .00***
Disease type 0.08 1.09 0.65–1.83 .76
Age at diagnosis 0.02 1.02 0.98–1.05 .34
Other family −0.20 0.82 0.42–1.58 .55
Other extended family −0.43 0.65 0.35–1.22 .18
% Correctly identified 67.3 % Correctly identified 66.4
Note. CI = confidence interval; OR = odds ratio.
*p < .05. **p < .01. ***p < .001.

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 IBD and Mental Health Status

TABLE 4. Logistic Regression Modelling Evaluating Predicting Mental Health Support Seeking
Behavior Classification Based on Demographic and Disease Characteristics
Seeking Mental Health Support (0 = No, 1 = Yes)
Enter Stepwise
B OR 95% CI p B OR 95% CI p
Step 1
Age 0.01 1.01 0.96–1.06 .80
Gender 1.29 3.64 0.91–14.47 .07
Education 0.36 1.44 0.85–2.43 .18
Income −0.91 0.40 0.21–0.78 .01** −0.67 0.51 0.32–0.84 .01**
Relationship −0.30 0.74 0.27–2.03 .56
Household 0.02 0.98 0.77–1.26 .89
Step 2
Perceived disease activity 0.18 1.19 0.91–1.58 .21
Disease type 0.02 1.02 0.44–2.38 .96
Age at diagnosis 0.01 1.01 0.95–1.07 .75
Other family −1.06 0.35 0.09–1.39 .14
Other extended family −0.50 0.61 0.18–2.04 .42
Step 3
K10 0.01 1.00 0.94–1.07 .98
% Correctly identified 78.2 % Correctly identified 78.7
Note. CI = confidence interval; OR = odds ratio.
**p < .01.

findings in this study, as low income was the only pre- conscientiousness (Schomerus et al., 2013). Again, our
dictor of MHS engagement. Interestingly, our data data do not consistently support these previous findings.
show that in this cohort, factors such as gender, educa-
tion, perceived disease activity, and severity of psycho- Limitations and Future Studies
logical distress did not influence people’s likelihood of A major limitation of this study was the use of online
engagement in MHS. It is unknown why income was self-reported data, and the likelihood of participation
the only predictor; however, it is possible that those bias, perhaps enriching the proportion reporting mental
with lower income were more willing to engage, while health issues. However, rates found here for mental
those with higher income may fear stigma or shame. health issues are in line with other research, and the
This study cannot resolve this issue, however, as rea- cohort is also broadly similar to other Australians living
sons for engagement were not sought. with IBD as identified in a population-based epidemio-
Previous studies have suggested that being younger, logical study of incident IBD in Australia (Wilson et al.,
experiencing feelings of shame, and having reduced 2010), apart from our cohort being more female biased
knowledge about mental health are predictors of nonen- (81% vs. 57%). However, it should be noted that gen-
gagement in MHS (Rusch et al., 2014; Rusch, Evans- der was controlled for in our analyses and not found to
Lacko, Henderson, Flach, & Thornicroft, 2011). be predictive of either having a mental health issue or
However, these previous findings are not supported by engaging with MHS. A further limitation was focus on
our data, as age was not a factor predicting engagement, only global psychological distress, rather than explor-
and those with higher income would be expected to be ing possible differences across various depression or
better educated about mental health in general. Other anxiety-based health conditions such as major depres-
factors previously reported to reduce engagement in sive episode and generalized anxiety. It must also be
MHS are lower education, reduced social support, acknowledged that this study was cross-sectional and
reduced resilience, and lower levels of trait involved English speaking-only participants. Further

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IBD and Mental Health Status

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the use of the MI to assess IBD activity. It must be 5994.2009.02110.x
acknowledged that this instrument—while validated— Australian Bureau of Statistics. (2012) 4817.0.55.001—Information
assesses only symptoms, not objective, active, inflammatory Paper: Use of the Kessler Psychological Distress Scale in ABS
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