Inflammatory Bowel Disease Distress Research Articles

National Prevalence of Psychological Distress and Use of Mental Health Care in Inflammatory Bowel Disease.

Individuals with inflammatory bowel disease (IBD) have elevated symptoms of anxiety and depression. The burden of such symptoms, accompanied by functional impairment in IBD, is not well documented, nor is utilization of mental health care in this population. Adults ≥18 years were identified in the cross-sectional 2015-2016 National Health Interview Survey. Responses from the Kessler Index were used to estimate the national prevalence of psychological distress with impairment and mental health-care use in IBD. Factors associated with psychological distress with impairment in IBD were analyzed using logistic regression. The prevalence of psychological distress with impairment was significantly higher in IBD than non-IBD adults (7.69% vs. 3.50%, respectively; P<.01). Among those with IBD and psychological distress with impairment, only a third (36.29%) had seen or talked to a mental health provider in the preceding 12 months. About half of these found the cost of mental health care unaffordable. On multivariable analysis, factors associated with psychological distress in IBD included increasing emergency room visits and trouble finding a health provider. A significant number of adults with IBD in the United States have psychological distress accompanied by functional impairment. However, mental health care is underutilized in this population. Many of these individuals find the cost of mental health care unaffordable, struggle to find a health provider, and experience repeated emergency room visits. Ongoing efforts to improve mental health care in IBD should address issues of access and cost. Additionally, these efforts should seek to understand other barriers to mental health-care use.

THE CROHN’S AND COLITIS DISTRESS SCALE: ASSESSING THE DOMAINS OF IMPACT IN YOUTH WITH IBD

Abstract INTRODUCTION Youth with Inflammatory Bowel Disease (IBD) are at significantly increased risk for depression and anxiety, with 25%-40% of youth with IBD reporting internalizing symptoms. These data are based on general measures of anxiety and depression without accounting for the confounds of disease-related processes. Disease-distress, on the other hand, disentangles disease-related processes, including medication sides effects, and the emotional experience of managing a chronic illness. Harris et al. developed a measure of IBD-related distress, the Crohn’s and Colitis Distress Scale (CCDS), to assess the expected worries, concerns, and fears associated with having IBD. This study involved an exploratory factor analysis (EFA) of the CCDS to better categorize IBD distress. METHODS Participants (N=120, ages 12-18, diagnosis of IBD) completed the 27-item CCDS. About half of participants were male (n=66; 55%) and majority were White (n=104; 86.7%). Eighty participants were diagnosed with Crohn’s disease (66.7%) and forty with ulcerative colitis (33.3%). Average length of time since diagnosis was 3.31 years (SD=2.77 years) and average length of time since participants’ last flare was 18.03 months (SD=24.65 months). A subsample of participants reported currently being symptomatic (n=44; 36.7%) and currently flaring (n=27; 22.5%). An EFA with varimax rotation was conducted to assess the factor structure of the CCDS. RESULTS The CCDS yielded a five-factor structure, with three to seven items per factor. Factor loadings ranged from .44 to .83 (see Table). Five factors were extracted from the EFA: emotional burden, physician-related, disease-related interpersonal, regimen-related, and disease-related functional impairment. An item-to-total analysis indicated 23 of 27 total items correlated strongly with the total (r &amp;gt; .5), four items were moderately correlated with the total (r= .43, r= .42, r= .38, and r= .49), and no items were largely uncorrelated with the total. Based on the factor analysis results, only items with an adequate factor loading, or were face valid or unique items for their respective factor domain, were retained. A final 22-item CCDS was supported. CONCLUSIONS The CCDS demonstrated a five-factor structure and the 22-item version was psychometrically sound. The factors that emerged are consistent with the disease-specific distress domains identified in other pediatric health populations (e.g., type 1 diabetes), as well as symptom-related distress as found in adults with IBD. Further validation of the measure is warranted, including assessment of the psychometric soundness of the regimen-related subscale. To our knowledge, the CCDS is the first multifaceted IBD-specific distress instrument to be developed for use with pediatric patients and may allow for further specificity in the identification of IBD-specific distress in this population.

P415 Improving food-related quality of life in Inflammatory Bowel Disease with a novel web-based intervention: a randomised controlled feasibility trial

Abstract Background Food-related quality of life (FR-QoL) refers to the psychosocial aspects and pleasure derived from food, eating and drinking. Impaired FR-QoL is prevalent in inflammatory bowel disease (IBD) and is associated with reduced intakes of fibre and certain micronutrients. Patient and health professional focus groups identified the need for web-based support and education on food in IBD, which was subsequently developed through experience-based co-design. The aim of this study was to establish the feasibility of a randomised controlled trial (RCT) investigating the effectiveness of the web-based intervention compared to usual care on FR-QoL in people with newly diagnosed IBD. Methods A randomised controlled feasibility trial was conducted in adults with Crohn’s disease or ulcerative colitis diagnosed in the preceding, 12 months. Patients with active and inactive IBD experiencing impaired FR-QoL (≤90 scored on the validated FR-QoL-29 questionnaire) were recruited. Participants were delivered usual care by their IBD team and were also randomised to either access to the web-based intervention (containing information and patient and clinician videos on various IBD-specific food and nutrition considerations) or no access to the website for, 12 weeks. Questionnaires were completed at baseline and end of trial to assess FR-QoL (FR-QoL-29), health-related quality of life (UK IBDQ), IBD distress (IBD Distress Scale) and anxiety and depression (HADS). Google Analytics was used to investigate usage of the web-based intervention. Results In total, 50 participants (ITT population) were recruited (81 screened), 30 randomised to the web-based intervention and, 20 to usual care, with, 48 completing the trial (PP population). In the ITT analysis, a greater increase in FR-QoL was observed in the web-based intervention (+11.7 SD, 18.2) than usual care group (+1.4 SD, 20.4, P=0.057), whilst IBD distress reduced in the web-based intervention (-6.8 SD, 26.6) and increased in the usual care group (+8.3 SD, 25.5, P=0.052). Participants in the web-based intervention group logged into the website an average of, 4.2 (SD, 2.9) times, and spent an average of, 13 minutes, 41 seconds (SD, 15 minutes, 1 second) on the website per visit. The most frequently accessed content covered dietary management of specific gut symptoms (accessed by, 52% of participants). In qualitative interviews the participants reported the intervention to be clear, user friendly, easy to navigate, and a good source of educational information. Conclusion This feasibility study demonstrates that a RCT of a web-based intervention is feasible and potentially effective in improving FR-QoL in IBD. An adequately powered RCT investigating the effectiveness of this intervention in IBD is feasible and now warranted.

THE CROHN'S AND COLITIS DISTRESS SCALE: ASSESSING THE DOMAINS OF IMPACT IN YOUTH WITH IBD

Youth with Inflammatory Bowel Disease (IBD) are at significantly increased risk for depression and anxiety, with 25%-40% of youth with IBD reporting internalizing symptoms. These data are based on general measures of anxiety and depression without accounting for the confounds of disease-related processes. Disease-distress, on the other hand, disentangles disease-related processes, including medication sides effects, and the emotional experience of managing a chronic illness. Harris et al. developed a measure of IBD-related distress, the Crohn’s and Colitis Distress Scale (CCDS), to assess the expected worries, concerns, and fears associated with having IBD. This study involved an exploratory factor analysis (EFA) of the CCDS to better categorize IBD distress. Participants (N=120, ages 12-18, diagnosis of IBD) completed the 27-item CCDS. About half of participants were male (n=66; 55%) and majority were White (n=104; 86.7%). Eighty participants were diagnosed with Crohn’s disease (66.7%) and forty with ulcerative colitis (33.3%). Average length of time since diagnosis was 3.31 years (SD=2.77 years) and average length of time since participants’ last flare was 18.03 months (SD=24.65 months). A subsample of participants reported currently being symptomatic (n=44; 36.7%) and currently flaring (n=27; 22.5%). An EFA with varimax rotation was conducted to assess the factor structure of the CCDS. The CCDS yielded a five-factor structure, with three to seven items per factor. Factor loadings ranged from .44 to .83 (see Table). Five factors were extracted from the EFA: emotional burden, physician-related, disease-related interpersonal, regimen-related, and disease-related functional impairment. An item-to-total analysis indicated 23 of 27 total items correlated strongly with the total (r > .5), four items were moderately correlated with the total (r = .43, r = .42, r = .38, and r = .49), and no items were largely uncorrelated with the total. Based on the factor analysis results, only items with an adequate factor loading, or were face valid or unique items for their respective factor domain, were retained. A final 22-item CCDS was supported. The CCDS demonstrated a five-factor structure and the 22-item version was psychometrically sound. The factors that emerged are consistent with the disease-specific distress domains identified in other pediatric health populations (e.g., type 1 diabetes), as well as symptom-related distress as found in adults with IBD. Further validation of the measure is warranted, including assessment of the psychometric soundness of the regimen-related subscale. To our knowledge, the CCDS is the first multifaceted IBD-specific distress instrument to be developed for use with pediatric patients and may allow for further specificity in the identification of IBD-specific distress in this population.

Low Subjective Wellbeing Is Associated with Psychological Distress in People Living with Inflammatory Bowel Disease.

Inflammatory bowel disease (IBD) is a common and debilitating disease of the gastrointestinal tract. Psychological distress is highly comorbid to IBD, especially during periods of active disease. However, a controversy exists on how to best manage its symptoms in the IBD population. This study aimed to explore protective and risk factors of psychological distress in IBD. A cross-sectional online survey was conducted via social media and online patient forums. Respondents (N = 235) filled out questionnaires on demographics, health characteristics and a range of psychological variables. Measures of pain, disease activity, comorbid functional symptom severity, social support, subjective wellbeing, sleep quality, fatigue, stress, age, BMI and gender were entered into the Classification and Regression Tree Analysis model. Overall, 87 participants (37%) reported distress. Self-reported stress significantly discriminated between cases of probable psychological distress. In those with high stress, patients with and without probable psychological distress were separated by subjective wellbeing. Among patients with low stress, fatigue was the primary discriminator. Monitoring patients for low subjective wellbeing and high stress in clinical settings could offer an opportunity to engage in early intervention to limit psychological distress development. Monitoring for fatigue in patients who seem otherwise psychologically well could offer preventative benefits.

P027 THE EMOTIONAL EXPERIENCE OF IBD: ARE THEY ALL DEPRESSED OR ARE WE MISSING SOMETHING?

Extant research indicates that youth with Inflammatory Bowel Disease (IBD) experience significantly higher rates of both depression and anxiety compared to their otherwise healthy peers. However, those data are based on general measures of depression and anxiety that don’t account for disease burden, IBD symptoms, or medication side effects. Diagnosing depression and anxiety in clinical care is based on the presence of symptoms and has evolved from the tradition of identification of psychopathology. Both approaches do not consider the context of the symptoms (i.e., IBD). The construct of IBD distress examines the emotional experience of IBD and is best described as distress being the expected worries, concerns, fears, and threats that are associated with struggling with a demanding and progressive chronic disease, its management, threats of complications, and loss of functioning. This study involved the development of the IBD Distress Scale (IDS) designed to evaluate the emotional experience of IBD in youth. The IDS is a 27-item self-report measure of distress related to IBD symptoms, treatment, and disease burden. In demonstrating IBD distress as a separate construct from depression and anxiety, we administered the IDS along with a general measure of depression (Patient Health Questionnaire, PHQ8) and a general measure of anxiety (General Anxiety Disorder, GAD7) in 47 youth with IBD attending their routine gastroenterology appointments. Youth were in various states of disease activity or remission. Of the 47 youth assessed, 49% were female and 51% were male. The mean age of the youth was 13.8 years of age whereas 63% had Crohn’s Disease (CD) and 37% had Ulcerative of Indeterminate Colitis (UC). Cronbach’s alpha for the IDS was .93 indicating a high degree of reliability. Neither age nor duration of IBD were related to IDS scores. However, youth who were symptomatic (61.9 vs. 42.4) or were currently flaring had significantly higher IDS scores (71.4 vs. 42.7). Finally, the correlations between the IDS and PHQ8 (0.61) and the IDS and GAD7 (0.53), clearly indicate that the construct of IBD distress as measured by the IDS is both related to general depression and anxiety, but is also a unique construct. In summary, this study represents one of the first examinations of the emotional experience of IBD in youth. Youth who were symptomatic or currently flaring reported higher degrees of IBD-related distress. Finally, this study demonstrates that the construct of IBD distress is both related to general depression and anxiety, but also exists as a construct in and of itself. Clinically, these findings have important implications for the identification of IBD distress in youth and the development of treatment approaches that target reductions in this distress separate from traditional modes of treatment for depression and anxiety.

Development and Psychometric Properties of the Inflammatory Bowel Disease Distress Scale (IBD-DS): A New Tool to Measure Disease-Specific Distress.

Inflammatory bowel disease (IBD) imposes a heavy psychosocial burden, with many patients reporting anxiety, depression, and distress. In diseases such as diabetes, disease-specific distress is associated with concordance with treatments and disease control. IBD distress, distinct from anxiety and depression, is evident in people with IBD. We aimed to develop a questionnaire for assessing IBD-specific distress, validate this against a gold standard distress measure for diabetes, and demonstrate the difference between anxiety, depression, and distress. The 94-item IBD Distress Scale (IBD-DS) was developed through secondary analysis of 3 qualitative data sets from previous IBD studies. Items were then refined through cognitive interviews in 2 stages (n = 15, n = 3). Three supplementary unscored questions were added to enable patients to identify their overall level of distress, their perceived level of disease activity, and their 3 most distressing issues. Subsequently, the 55-item IBD Distress Scale was subjected to test-retest. Two hundred seventy-five people received the test draft IBD-DS, and 168 responded (60.4%). Of these, 136 (82%) returned the retest draft of IBD-DS 3 weeks later. After analysis, further item reduction was informed by response rates, kappa values, and correlation coefficients, and test-retest was repeated. One hundred fifty-four people received the test final 28-item IBD-DS, and 123 people responded (58.8%). Of these, 95 (77%) returned the retest final IBD-DS. The 94 items were reduced to 28 items. Good intraclass correlation (ICC) was found between test-retest scores on 72 complete data sets with unchanged disease status (ICC, 0.92; 95% confidence interval, 0.88-0.95). Cronbach's alpha was 0.95, indicating excellent internal consistency. Factor analysis indicated scoring the items as a single domain (score range, 0-168). The final IBD-DS performs well and offers a tool for assessing IBD-specific distress.

P354 Refinement and confirmation of psychometric properties of the Inflammatory Bowel Disease Distress Scale (IBD-DS): A new tool to measure disease-specific distress

P354 Refinement and confirmation of psychometric properties of the Inflammatory Bowel Disease Distress Scale (IBD-DS): A new tool to measure disease-specific distress

Identifying disease-specific distress in patients with inflammatory bowel disease.

Inflammatory bowel disease (IBD) imposes a significant burden on patients. The authors have noticed an underlying presence of distress, seemingly distinct from anxiety and depression, in qualitative data collected for previous studies. Disease-related distress has been explored in diabetes, but has not been addressed in IBD. The authors aimed to determine the presence of IBD distress to inform development of a scale for assessing the phenomenon. This three-phase study used (1) a conceptual framework based on diabetes distress to conduct secondary analysis of qualitative data from four previous IBD studies (n=49 transcripts). Patient advisors confirmed the themes identified as causing distress, which guided (2) a focus group with people with IBD (n=8) and (3) items generated from phase 1 and 2 were subsequently used for a modified Delphi survey of IBD health professionals. Five IBD-distress themes were identified: emotional distress; healthcare-related distress; interpersonal/social distress; treatment-related distress; and symptom-related distress. Disease-specific distress in IBD was identified and is distinct from stress, anxiety and depression. Some causes of IBD distress overlap with diabetes distress, but existing diabetes-distress scales do not explain all the distress experienced by people with IBD and development of a new IBD-distress scale is warranted.

PTH-048 Towards Understanding Psychological Distress in Inflammatory Bowel Disease: A Qualitative Study of Patients and Healthcare Professionals

Introduction Inflammatory Bowel Diseases (IBD) are chronic inflammatory autoimmune conditions resulting in sickness, diarrhoea, weight loss, abdominal pain and fatigue. Depression and anxiety are high at 21% and 41% respectively resulting in further reduced quality of life. However, most IBD services do not have access to psychological support or dedicated resources for distress. This study aimed to identify modifiable factors associated with the occurrence of distress in IBD to inform a guided self-management intervention. Methods Semi-structured interviews were carried out with 29 people with IBD (pwIBD) and twelve healthcare professionals. Interviews were audio-recorded and transcribed verbatim. Data were analysed using thematic analysis with elements of grounded theory. Results A model of factors identified by pwIBD contributing to distress was developed. Themes included; symptoms which can be embarrassing and uncontrollable during flares; unpredictability and progression of IBD, creating uncertainty for the future; social factors including lack of understanding and the negative impact on social relationships; navigating the healthcare system; medical procedures which can be unpleasant and invasive. Some themes were also recognised as being potential buffers to distress such as having good social support and healthcare staff. Healthcare professionals acknowledged their role in holistic care but cited a lack of knowledge and resources to adequately promote psychological support. Conclusion PwIBD identified areas acting as potential promoters and buffers to distress in IBD which were mostly supported by healthcare professionals. The results were used to inform the content of a self-management intervention targeting psychological distress. Further we seek to develop guidelines for the successful introduction of the intervention into the NHS standard care. Disclosure of Interest None Declared

P294. Distress in inflammatory bowel disease: development of a new assessment tool

P294. Distress in inflammatory bowel disease: development of a new assessment tool

A longitudinal study of alexithymia and psychological distress in inflammatory bowel disease

A group of 104 patients with inflammatory bowel disease (IBD) was followed longitudinally for 6 months. While anxiety and depression scores were influenced over time by changes in the level of disease activity, there was no significant change in alexithymia scores. The findings support the contention that alexithymia is a stable personality characteristic in some IBD patients, in contrast to anxiety and depression which are state phenomena influenced by the level of disease activity.