The impact of cognitive functions, psychological disorders, and coping strategies on quality of life and disease outcomes in patients with inflammatory bowel diseases: A cross-sectional study.

Quality of life (QoL) in patients with inflammatory bowel disease (IBD) is influenced by several factors, many of which may also impact cognitive function. However, the extent of the interaction among these factors, QoL, and disease outcomes in IBD patients remains unknown. We thus aim to characterize the relationships among psychological disorders, coping mechanisms, cognitive function, and the overall impact on QoL and disease outcomes in patients with IBD. This cross-sectional observational study was conducted at an academic care center. QoL was evaluated using the Short Inflammatory Bowel Disease Questionnaire (SIBDQ), and disease severity was evaluated using the Harvey-Bradshaw Index (HBI) for Crohn's disease (CD) and the Simple Clinical Colitis Activity Index (SCCAI) for ulcerative colitis (UC). We also used the Hospital Anxiety and Depression scale (HADS). Regression models were used to test the associations among QoL, number of hospitalizations, disease severity, cognitive functioning (working memory [WM] and reaction time), and coping strategies while controlling for anxiety and depressive symptoms, age, and sex. This study included 41 patients (24 patients with CD and 17 with UC) whose mean age was 28.2 (±8.4) years (23 males) and mean SIBDQ score was 51.5 (±10.0). Patients with more WM errors had lower QoL scores (P = .041), whereas patients with higher anxiety levels had lower QoL and more active UC (P = .008 and P = .016, respectively). The use of avoidant coping mechanisms was associated with a significantly higher number of hospitalizations (P = .038), and patients who adopted more emotion-focused coping strategies had a longer illness duration (P = .021). Finally, patients with higher education levels were found to use more active coping mechanisms than others. These results confirm the impact of cognitive, psychological, and coping factors on QoL and disease outcomes in patients with IBD; however, the mechanisms by which these factors interrelate remain unclear. Therapies aimed at improving both cognitive functions and psychological conditions may thus be effective at improving QoL and disease outcomes in IBD patients, and education may play a positive role in promoting the adoption of more effective coping strategies among IBD patients.

Assessing anorectal function in patients with recurrent ulcerative colitis.

PURPOSE: Ulcerative colitis (UC) is an inflammatory bowel disease with an unclear etiology that can lead to irreversible changes in distal colonic function in chronic patients. This study investigated anorectal function in recurrent UC patients and identified influencing factors. METHODS: This prospective study enrolled 33 recurrent UC patients and 40 newly diagnosed patients from January 2019 to December 2022. Data collection included clinical records, scores, and anorectal function assessments. Regression analyses were used to identify factors impacting anorectal function. RESULTS: Recurrent UC patients had higher baseline CRP and fecal calprotectin levels, increased anxiety and depression, and more severe fecal incontinence. They also had lower BMIs, serum Hb and albumin (ALB) levels, and Inflammatory Bowel Disease Questionnaire scores than did initial-onset UC patients. Multivariate linear regression analysis revealed that long disease duration (coef. - 0.376, P < 0.001) and high fecal calprotectin level (coef. - 0.656, P < 0.001) independently influenced the initial sensation threshold in recurrent UC patients. Additionally, high fecal calprotectin (coef. - 0.073, P = 0.013) and high Zung Self-Rating Anxiety Scale score (coef. - 0.489, P = 0.001) were identified as two independent determinants of the defecation volume threshold. For the defecation urgency threshold, the independent factors included high disease duration (coef. - 0.358, P = 0.017) and high fecal calprotectin level (coef. - 0.499, P = 0.001). Similarly, the sole independent factor identified for the maximum capacity threshold was high fecal calprotectin (coef. - 0.691, P = 0.001). CONCLUSION: Recurrent UC patients had increased rectal sensitivity and compromised anorectal function, which significantly impacted quality of life. Proactively managing the disease, reducing UC relapses, and addressing anxiety are effective measures for improving anorectal function in these patients.

ASSESSMENT OF QUALITY OF LIFE IN ELDERLY PATIENTS WITH INFLAMMATORY BOWEL DISEASE WITH MILD ACTIVITY AND IN CLINICAL REMISSION.

BACKGROUND: Inflammatory bowel disease (IBD), represented by Crohn's disease (CD) and ulcerative colitis (UC), is a chronic condition that affects all age groups, predominantly in young individuals. Currently, an increase in the prevalence of IBD has been documented, in parallel with the increase in the elderly population. The scarce number of studies that better characterize the impact of IBD on Quality of Life (QoL) in the elderly motivated the present study. OBJECTIVE: To evaluate the impact of IBD on the QoL of elderly people treated at a Tertiary IBD Center. METHODS: Prospective cross-sectional study that included elderly patients (age ≥60 years) with quiescent or mildly active IBD treated at the HU-UFJF IBD Center between March 2019 and December 2022. Elderly companions without severe comorbidities who attended the consultation with the patients were included as a control group. Sociodemographic and IBD-related characteristics were recorded. QoL was assessed using previously validated questionnaires (WHOQOL-BREF and IBDQ). Patients with IBD with moderate to severe activity, history of recent or imminent hospitalization, serious or opportunistic infections in the last 6 months, previous neoplasia, dementia, and difficulty understanding/fulfilling the questionnaires were excluded. RESULTS: A total of 123 patients were included (74 with IBD and 49 in the control group), with a mean age of 67±6.2 years, 52.7% with CD, and 47.3% with UC. Mild disease activity was observed in 31.1%. Both groups (IBD patients and control) were comparable based on age, sex, BMI, and the Charlson Comorbidity Index. Patients with IBD and controls had similar QoL scores in the different domains assessed by the WHOQOL-BREF. On the other hand, when evaluating the general facet of QoL, IBD patients had significantly lower scores in General QoL (3.71±0.87 versus 4.02±0.62, respectively; P=0.021) and General Health (3.32±1.05 versus 3.69±0.94, respectively; P=0.035). The presence of mildly active IBD negatively impacted the general health score (2.91±0.99 versus 3.47±1.04, respectively; P=0.035) and the physical domain of the WHOQOL-BREF (12.27±2.63 versus 13.86±2.61, respectively; P=0.019) when compared to patients in remission. Conversely, no impact on QoL was observed with the Application of the IBDQ questionnaire regarding the type of the disease (161±38.5 versus 163.1±42.6 for CD and UC, respectively; P=0.84) or the presence of activity (152.5±38.8 versus 166.4±40.5, respectively; P=0.17). CONCLUSION: No statistically significant differences were found between elderly patients with mildly active or quiescent IBD and elderly patients without IBD when observing global QoL scores. However, IBD negatively impacted the general facet of QoL, just as mild activity was associated with lower scores in general health and the physical domain assessed by the WHOQOL-BREF. Patients with IBD treated with biological therapy had better Qol than those on conventional therapy. Future studies are needed to choose the most appropriate tool for assessing QoL in this population.

Sources of diagnostic delay for people with Crohn's disease and ulcerative colitis: Qualitative research study.

OBJECTIVE: An improved understanding of the causes and experience of diagnostic delay in Inflammatory Bowel Disease (IBD). METHODS: Framework analysis of semi-structured interviews with 20 adults with IBD. RESULTS: Participants' prior knowledge of normal bowel function/IBD was limited. Symptoms were sometimes misattributed to mild/transient conditions or normalised until intolerable. Family pressures, work, education, mistrust of doctors, fear and embarrassment could exacerbate delays. Poor availability of face-to-face appointments deterred people from seeing a GP. Patients feared that by the time they got to see their GP, their symptoms would have resolved. Patients instead self-managed symptoms, but often regretted not seeking help earlier. Limited time in consultations, language barriers, embarrassment, and delays in test results subsequently delayed specialist referrals. GPs misattributed symptoms to other conditions due to atypical or non-specific presentations, leading to reduced trust in health systems. Patients complained of poor communication, delays in accessing test results, appointments, and onward referrals-all associated with clinical deterioration. GPs were sometimes unable to 'fast-track' patients into specialist care. Consultations and endoscopies were often difficult experiences for patients, especially for non-English speakers who are also less likely to receive information on mental health support and the practicalities of living with IBD. CONCLUSIONS: The framework analysis demonstrates delay in the diagnosis of IBD at each stage of the patient journey. RECOMMENDATIONS: Greater awareness of IBD amongst the general population would facilitate presentation to healthcare services through symptom recognition by individuals and community advice. Greater awareness in primary care would help ensure IBD is included in differential diagnosis. In secondary care, greater attention to the wider needs of patients is needed-beyond diagnosis and treatment. All clinicians should consider atypical presentations and the fluctuating nature of IBD. Diagnostic overshadowing is a significant risk-where other diagnoses are already in play the risk of delay is considerable.

Nutritional Profile, Disease Severity, and Quality of Life of Patients with Inflammatory Bowel Disease: A Case-Control Study.

INTRODUCTION: Diet is thought to play an important role in the clinical course and quality of life (QOL) of patients with inflammatory bowel disease (IBD). However, dietary habits of patients with IBD are still unknown. This case-control study aims to compare the dietary habits of patients with IBD to healthy controls and evaluate differences in disease severity and QOL. MATERIALS AND METHODS: Food frequency, severity scores using the Harvey-Bradshaw and Ulcerative colitis activity index, and QOL were assessed using online questionnaires. Dietary habits were compared for patients with active disease and remission and for those with low QOL (LQOL) and high QOL (HQOL). RESULTS: We recruited 61 patients with IBD and 101 controls. Significance was set at p = 0.05. Controls consumed significantly more daily calories (2546 vs. 1641, p = 0.001). However, patients with IBD consumed a higher percentage of carbohydrates (50% vs. 45%, p = 0.001), more red meat (p = 0.024), and less fiber, sucrose, and lactose (p = 0.001, 0.001, and 0.036). Patients with active disease had higher lipid intake, lower protein intake, and lower QOL (47 vs. 58, p = 0.001). Dietary differences between LQOL and HQOL mirrored those between active disease and remission. CONCLUSION: This study is the first to provide valuable insights into the nutritional profile of Lebanese patients with IBD.

Inhibiting the activation of enteric glial cells alleviates intestinal inflammation and comorbid anxiety- and depressive-like behaviors in the ulcerative colitis mice.

Ulcerative colitis (UC) is a common inflammatory bowel disease with a complex origin in clinical settings. It is frequently accompanied by negative emotional responses, including anxiety and depression. Enteric glial cells (EGCs) are important components of the gut-brain axis and are involved in the development of the enteric nervous system (ENS), intestinal neuroimmune, and regulation of intestinal motor functions. Since there is limited research encompassing the regulatory function of EGCs in anxiety- and depression-like behaviors induced by UC, this study aims to reveal their regulatory role in such behaviors and associated intestinal inflammation. This study applied morphological, molecular biological, and behavioral methods to observe the morphological and functional changes of EGCs in UC mice. The results indicated a significant activation of EGCs in the ENS of dextran sodium sulfate -induced UC mice. This activation was evidenced by morphological alterations, such as elongation or terminal swelling of processes. Besides EGCs activation, UC mice exhibited significantly elevated expression levels of pro-inflammatory cytokines in the peripheral blood, accompanied by anxiety- and depression-like behaviors. The inhibition of EGCs activity within the ENS can ameliorate the anxiety- and depression-like behaviors caused by UC. Our data suggest that UC and its resulting behaviors may be related to the activation of EGCs within the ENS. Moreover, the modulation of intestinal inflammation through inhibition of EGCs activation emerges as a promising clinical approach for alleviating UC-induced anxiety- and depression-like behaviors.

Patient interpretations of patient-reported outcome measures to assess bowel urgency: qualitative interviews in ulcerative colitis.

OBJECTIVES: Bowel urgency is an impactful core symptom of ulcerative colitis (UC). Patient-reported outcome (PRO) questionnaires have been developed and used to assess the patient experience of this important symptom. The objective of this paper is to present evidence from qualitative research conducted to support the use and interpretation of select PRO questionnaires to assess bowel urgency related to the UC patient experience. METHODS: Qualitative interviews were conducted with ten adults with a clinician-confirmed diagnosis of moderately to severely active UC. Interviews aimed to document patient interpretation of modified recall periods for the Urgency Numeric Rating Scale (Urgency NRS), two global assessments (i.e., the Patient Global Impression of Severity [PGIS] and Patient Global Impression of Change [PGIC]), and four items (Items 11, 16, 23, and 26) of the Inflammatory Bowel Disease Questionnaire (IBDQ), and explore the patient perspective of meaningful change on these questionnaires. RESULTS: Both modified Urgency NRS versions (with 7-day or 3-day recall period) were interpreted as intended by most patients (≥ 88.9%), and slightly more than half of patients (60.0%) reported that the 7-day recall period was more relevant to their bowel urgency experience. Patients reported thinking of bowel urgency (≥ 80.0%) or bowel urgency-related accidents (70.0% of patients) when interpreting the global assessments and IBDQ items. Most patients reported a 1- to 3-point change as the smallest meaningful improvement that would be meaningful on the Urgency NRS (similar to findings on other questionnaires). CONCLUSION: Adults with UC can understand and respond to the Urgency NRS with modified recall periods (i.e., 7-day or 3-day), interpret the conceptual content of the PGIS, PGIC, and select IBDQ items to be inclusive of bowel urgency and bowel urgency-related accidents, and select answers representing meaningful improvements on the Urgency NRS, PGIS, PGIC, and IBDQ item response scales. These results further contribute patient-centered data to existing UC and bowel urgency research.

Three-stage versus modified two-stage surgery for ulcerative colitis: a patient-centred treatment trade-off study.

AIM: There is ongoing debate about whether ileal pouch-anal anastomosis needs temporary diversion at the time of construction. Stomas may reduce risk for anastomotic leak (AL) but are also associated with complications, emergency department visits and readmissions. This treatment trade-off study aims to measure patients' preferences by assessing the absolute risk of AL and pouch failure (PF) they are willing to accept to avoid a diverting ileostomy. METHODS: Fifty-two patients with ulcerative colitis, with or without previous pouch surgery, from Mount Sinai Hospital, Toronto, participated in this study. Standardized interviews were conducted using the treatment trade-off threshold technique. An online anonymous survey was used to collect patient demographics. We measured the absolute increased risk in AL and PF that patients would accept to undergo modified two-stage surgery as opposed to traditional three-stage surgery. RESULTS: Thirty-two patients (mean age 38.7 ± 15.3) with previous surgery and 20 patients (mean age 39.5 ± 11.9) with no previous surgery participated. Patients were willing to accept an absolute increased leak rate of 5% (interquartile range 4.5%-15%) to avoid a diverting ileostomy. Similarly, patients were willing to accept an absolute increased PF rate of 5% (interquartile range 2.5%-10%). Younger patients, aged 21-29, had lower tolerance for PF, accepting an absolute increase of only 2% versus 5% for patients older than 30 (P = 0.01). CONCLUSION: Patients were willing to accept a 5% increased AL rate or PF rate to avoid a temporary diverting ileostomy. This should be taken into consideration when deciding between modified two- and three-stage pouch procedures.

Psychological well-being of children and adolescents with inflammatory bowel disease.

OBJECTIVES: Prior studies on the psychological well-being in pediatric inflammatory bowel disease (PIBD) have reported controversial results. Our aim was to compare the psychological well-being and lifestyle factors in patients with PIBD and their controls and to assess the role of contributing disease characteristics. METHODS: This cross-sectional study included 60 PIBD patients aged 6-17 years (26 with Crohn's disease [CD], 34 with ulcerative colitis [UC] or unclassified colitis [IBD-U]) from two university hospitals in Finland, and their age- and sex-matched healthy controls. Psychological well-being was assessed with three measures: a questionnaire on overall psychological well-being (PSWB) and for adolescents also Beck Depression Inventory (BDI Ia) and Perceived Stress Scale (PSS). In addition to disease characteristics and pain, we assessed physical activity, sleep, screen time, and social well-being. RESULTS: Controls were more likely of stressing more (odds ratio [OR] = 3.67, 95% confidence interval [95% CI] 95% CI = 1.02-13.14), but other measures of psychological well-being did not differ statistically significantly between patients and controls. In CD, a clinically more active disease associated with inferior psychological well-being in adolescents (BDI [ρ = 0.63, p = 0.021], PSS [ρ = 0.70, p = 0.008], PSWB [ρ = 0.56, p = 0.049]). Longer time from diagnosis correlated with better psychological well-being on BDI (ρ = -0.39, p = 0.024) and PSS (ρ = -0.38, p = 0.034). Lifestyle was more sedentary in PIBD (less physical activity in children OR = 0.82, 95% CI = 0.68-0.99 and more screen time in adolescents OR = 1.18, 95% CI = 1.00-1.40). CONCLUSION: Although the clinical features of PIBD are potentially a burden for psychological well-being, many young patients cope well with their disease. Individual variation in well-being is remarkable, making supportive measures challenging.

Association between Sense of Coherence, Disease-Specific Symptoms, and Health-Related Quality of Life among Japanese Patients with Ulcerative Colitis: A Cross-Sectional Study.

INTRODUCTION: We examined the associations among disease-related symptoms, health-related quality of life (HRQOL), and sense of coherence (SOC) in Japanese patients with ulcerative colitis (UC). METHODS: This cross-sectional survey involved patients and physicians at 23 hospitals specializing in UC treatment in Japan (December 2019-December 2020). Multiple linear regression analysis was performed using scores on the Mental Health and General Health subscales of the Medical Outcomes Study 36-Item Short-Form Health Survey as outcomes and SOC as the main independent variable. Scores on the Inflammatory Bowel Disease Questionnaire (IBDQ) and Fecal Incontinence Quality of Life Scale (FIQL) were used to measure the effect of disease-related symptoms. The moderating effect of symptoms on the association between HRQOL and SOC was also tested. RESULTS: SOC was positively and independently associated with HRQOL (Mental Health: ß = 0.43, 95% confidence interval [CI] = 0.24-0.61, p < 0.001; General Health: ß = 0.41, 95% CI = 0.23-0.59, p < 0.001). The association of SOC with Mental Health scores did not differ by symptoms, whereas its association with General Health was attenuated by symptoms (interaction term of IBDQ by SOC: ß = -0.0082, 95% CI = -0.017 to 0.00064, p = 0.07; that of FIQL by SOC: ß = -0.0052, 95% CI = -0.011 to 0.0010, p = 0.10). CONCLUSIONS: SOC affected mental health independently, and its protective association with general health perception was affected by symptoms. Further research is required to determine the most effective use of SOC in interventions to improve HRQOL in patients with UC.

Effect of Suboptimal Disease Control on Patient Quality of Life: Real-World Data from the Observational IBD-PODCAST Canada Trial.

BACKGROUND: The real-world application of STRIDE-II treatment targets to identify whether disease control is optimal in Crohn's disease (CD) and ulcerative colitis (UC) is not well known. AIMS: This study aimed to estimate proportions of patients with suboptimally controlled CD and UC in real-world Canadian healthcare settings and the impact on quality of life (QoL). METHODS: The noninterventional, multicenter, observational IBD-PODCAST Canada study comprised a single study visit involving routine assessments, patient- and clinician-completed questionnaires, and a retrospective chart review. Primary outcomes were proportions of patients with STRIDE-II-based red flags indicative of suboptimal disease control and mean ± standard deviation Short Inflammatory Bowel Disease Questionnaire (SIBDQ) scores. Secondary outcomes included proportions of patients and clinicians subjectively reporting suboptimal control. RESULTS: Among 163 enrolled patients from 10 sites, 45/87 patients with CD (51.7%; 95% CI: 40.8%, 62.6%) and 33/76 patients with UC (43.3%; 95% CI: 32.1%, 55.3%) had suboptimal disease control based on STRIDE-II criteria. Suboptimal control was subjectively reported at lower proportions (patients: CD, 15.0%; UC, 18.6%; clinicians: CD, 19.5%; UC, 25.0%). Numerically lower SIBDQ scores were observed with suboptimal control (CD, 43.0 ± 10.8; UC, 42.5 ± 12.0) than with optimal control (CD, 58.2 ± 7.2; UC, 57.8 ± 6.6). CONCLUSIONS: Approximately 50% (CD) and 40% (UC) of patients from real-world Canadian practices had suboptimal disease control based on STRIDE-II criteria. Suboptimal control was underestimated by patients and clinicians and accompanied by reduced QoL, suggesting further efforts to implement STRIDE-II treat-to-target strategies are needed.

Patient experiences in ulcerative colitis: conceptual model and review of patient-reported outcome measures.

PURPOSE: To identify symptoms and their impacts on daily functioning and health-related quality of life (HRQoL) experienced by adult patients with ulcerative colitis (UC) and evaluate patient-reported outcome (PRO) measures for UC clinical studies. METHODS: A conceptual model of symptoms and impacts of UC were developed from a literature review. PRO measures were identified from the literature, clinical trials databases, health technology assessment submissions, and regulatory label claims, and were selected for conceptual analysis based on disease specificity and use across information sources. PRO measures covering the most concepts when mapped against the conceptual model were assessed for gaps in psychometric properties using Food and Drug Administration (FDA) guidance and consensus-based standards for the selection of health measurement instruments (COSMIN) criteria. RESULTS: The conceptual model grouped the 52 symptom concepts and 72 proximal and distal impacts into eight, two, and five dimensions, respectively. Of 65 PRO measures identified, eight underwent conceptual analysis. Measures covering the most concepts and assessed for psychometric properties were the Inflammatory Bowel Disease Questionnaire, Symptoms and Impacts Questionnaire for UC, UC-PRO symptoms modules, UC-PRO impact modules, and Crohn's and UC Questionnaire; all had good or excellent support for content validity. The UC-PRO Signs and Symptoms fully met FDA guidance and COSMIN criteria for content validity and most psychometric properties. CONCLUSION: Existing PRO measures assess concepts relevant to patients with UC, but all PRO measures reviewed require further psychometric evaluation to demonstrate they are fit for purpose.

Disease Acceptance, but not Perceived Control, is Uniquely Associated with Inflammatory Bowel Disease-related Disability.

BACKGROUND AND AIMS: Disability, an important aspect of disease burden in patients with inflammatory bowel disease [IBD], has been suggested as a valuable clinical endpoint. We aimed to investigate how disease acceptance and perceived control, two psychological predictors of subjective health, are associated with IBD-related disability. METHODS: In this cross-sectional study, adult IBD patients from the University Hospitals Leuven received a survey with questions about clinical and demographic characteristics, disease acceptance and perceived control [Subjective Health Experience model questionnaire], and IBD-related disability [IBD Disk]. Multiple linear regressions assessed predictors of IBD-related disability in the total sample and in the subgroups of patients in clinical remission or with active disease. RESULTS: In the total sample (N = 1250, 54.2% female, median [interquartile range: IQR] age 51 [39-61] years, 61.3% Crohn's disease, 34.9% active disease), adding the psychological predictors to the model resulted in an increased explained variance in IBD-related disability of 19% compared with a model with only demographic and clinical characteristics [R2adj 38% vs 19%, p <0.001]. The increase in explained variance was higher for patients in clinical remission [ΔR2adj 20%, p <0.001] compared with patients with active disease [ΔR2adj 10%, p <0.001]. Of these predictors, disease acceptance was most strongly associated with disability in the total sample [ß = -0.44, p <0.001], as well as in both subgroups [ß = -0.47, p <0.001 and ß = -0.31, p <0.001 respectively]. Perceived control was not significantly associated with disability when accounting for all other predictors. CONCLUSIONS: Disease acceptance is strongly associated with IBD-related disability, supporting further research into disease acceptance as a treatment target.

Psychological symptoms and quality of life in patients with inflammatory bowel disease in China: A multicenter study.

AIMS: To investigate the current situation of mental psychology and quality of life (QoL) in patients with inflammatory bowel disease (IBD) in China, and analyze the influencing factors. METHODS: A unified questionnaire was developed to collect clinical data on IBD patients from 42 hospitals in 22 provinces from September 2021 to May 2022. Multivariate Logistic regression analysis was conducted, and independent influencing factors were screened out to construct nomogram. The consistency index (C-index), receiver operating characteristic (ROC) curve, area under the ROC curve (AUC), calibration curve, and decision curve analysis (DCA) were used to evaluate the discrimination, accuracy, and clinical utility of the nomogram model. RESULTS: A total of 2478 IBD patients were surveyed, including 1371 patients with ulcerative colitis (UC) and 1107 patients with Crohn's disease (CD). Among them, 25.5%, 29.7%, 60.2%, and 37.7% of IBD patients had anxiety, depression, sleep disturbance and poor QoL, respectively. The proportion of anxiety, depression, and poor QoL in UC patients was significantly higher than that in CD patients (all p < 0.05), but there was no difference in sleep disturbance between them (p = 0.737). Female, higher disease activity and the first visit were independent risk factors for anxiety, depression and sleep disturbance in IBD patients (all p < 0.05). The first visit, higher disease activity, abdominal pain and diarrhea symptoms, anxiety, depression and sleep disturbance were independent risk factors for the poor QoL of patients (all p < 0.05). The AUC value of the nomogram prediction model for predicting poor QoL was 0.773 (95% CI: 0.754-0.792). The calibration diagram of the model showed that the calibration curve fit well with the ideal curve, and DCA showed that the nomogram model could bring clinical benefits. CONCLUSION: IBD patients have higher anxiety, depression, and sleep disturbance, which affect their QoL. The nomogram prediction model we constructed has high accuracy and performance when predicting QoL.

Disordered eating behaviors in pediatric patients with inflammatory bowel disease in remission or mild-moderate disease activity.

BACKGROUND: Inflammatory bowel disease (IBD) is a chronic, autoimmune disorder that affects the gastrointestinal tract. Disordered eating describes irregular eating behaviors that may be a precursor to an eating disorder diagnosis. Higher rates of disordered eating have been described in chronic diseases. Screening for disordered eating is not performed in pediatric patients with IBD. The goal of this longitudinal study was to use the Eating Attitudes Test (EAT-26) to screen pediatric patients with IBD for disordered eating, estimate our population's prevalence, identify potential risk factors, and correlate positive EAT-26 screen results with evaluation in adolescent medicine clinic. METHODS: Eighty patients with IBD between 10 and 21 years completed the EAT-26 questionnaire during gastroenterology clinic visit. Disease activity was measured using Pediatric Ulcerative Colitis Activity Index (PUCAI) and Pediatric Crohn's Disease Activity Index (PCDAI). Patients also rated their own disease activity on a numerical scale. RESULTS: Five patients had a positive EAT-26 screen and were evaluated in the adolescent medicine clinic. One hundred percent of those who screened positive were diagnosed with a concomitant eating disorder once evaluated. Only 20% of those who screened positive had active IBD. Higher weight, body mass index, and patient perception of disease activity were associated with increased EAT-26 score. CONCLUSION: Pediatric patients with IBD are at risk for disordered eating, with a prevalence of 6% in our population, which is twice the prevalence of disordered eating in the general population. The EAT-26 questionnaire is a feasible tool to screen pediatric IBD patients for disordered eating.

Psychological disorders and coping strategies in patients with inflammatory bowel disease. Their impact on health-related quality of life

Background and objectives: inflammatory bowel disease (IBD) has a major impact on psychological well-being. This condition is associated with a high level of anxiety and mood disorders, but stress prevalence and how an individual copes with IBD have not been sufficiently explored. The objective of this study was to assess the impact of the disease on psychological disorders and to identify coping strategies used by patients with IBD, as well as to analyze the relationship between these variables and sociodemographic and clinical variables. Methods: a cross-sectional prospective study was performed including 126 consecutive patients. Those with psychiatric conditions prior to the onset of the IBD were excluded. Independent variables were measured using a sociodemographic and clinical questionnaire. The patients completed the Hospital Anxiety and Depression Scale (HADS), the Perceived Stress Scale (PSS) and the BRIEF COPE questionnaire. Quality of life was measured using the nine-item IBD Quality of Life (IBDQ-9). Results: the final cohort comprised 100 patients (37 with ulcerative colitis and 63 with Crohn’s disease). The prevalence rates of the variables of stress, anxiety and depression were high (44 %, 24 % and 14 %, respectively). Stress and depression were higher in females (p < 0.05), without differences regarding other sociodemographic and clinical variables. Moreover, higher levels of anxiety and depression were found to be associated with stress and dysfunctional coping strategies (p < 0.01). Conclusions: patients with IBD, particularly women, have high rates of psychological disorders. Those with anxiety and depression presented more stress and used more dysfunctional strategies. These conditions must be considered for a multidisciplinary management. (AU)

Fecal Urgency in Ulcerative Colitis: Impact on Quality of Life and Psychological Well-Being in Active and Inactive Disease States.

Ulcerative colitis (UC) is a chronic, relapsing-and-remitting, potentially progressive form of inflammatory bowel disease (IBD) with multidimensional and often negative effects on patients' lives. Fecal urgency, the sudden and compelling desire to defecate, often accompanied by impaired bowel control leading to frequent and urgent trips to the bathroom, is a distressing symptom, experienced by more than 50% of patients with UC.1 Physicians frequently underestimate the burden of fecal urgency on patients' lives, with ramifications ranging from disruption in daily activities, social interactions, and emotional distress with resultant impairment in quality of life (QoL).2,3.

Qualidade de vida dos pacientes de um ambulatório multidisciplinar de doenças inflamatórias intestinais / Quality of life of patients from a multidisciplinary clinic of inflammatory bowel disease

ABSTRACT BACKGROUND: Inflammatory bowel disease encompasses pathological entities, the main being Crohn's disease and ulcerative rectocolitis. Both are characterized by chronic inflammation of the intestine. It affects young people of active age, compromising the situation of those patients, especially their quality of life, experiencing a strong deterioration in their clinical condition, from physical to social and emotional aspects. OBJECTIVE: Evaluate the quality of life of patients assisted in the multidisciplinary reference outpatient clinic for the treatment of inflammatory bowel diseases, through sociodemographic data and specific questionnaires on the disease, evaluating the intestinal and systemic symptoms and the social and emotional aspects. Make a comparison between the two scales used to obtain the data. METHODS: A cross-sectional study was carried out in which patients diagnosed with inflammatory bowel disease were evaluated and observed at a reference outpatient clinic for treatment from May 2017 through December 2018. The participants responded to the Socio-demographic and Clinical Protocol, the SF-36 general quality of life questionnaire and the specific Inflammatory Bowel Disease questionnaire, in addition the correlation between the two scales was performed using Pearson's Correlation (metric scale), which data were analyzed by means of descriptive statistics and the significance level adopted was 5% (P≤0.05). The population studied consisted of 71 patients, excluding pregnant or nursing women and patients under 18 years of age. RESULTS: Seventy-one patients participated in the study, with an average age of 46.5 years and standard deviation of ±13.8; 45 patients had Crohn's disease and 26 were diagnosed with ulcerative rectocolitis; 73.2% were women; 64.8% married; 8.4%, smokers; 50.7% reported practising some type of physical activity. A good distribution of patients was observed between the domains of each questionnaire; no low scores were found for quality of life, and systemic symptoms and emotional aspects were those with the lowest scores among the parameters of the Inflammatory Bowel Disease Questionnaire; physical (40.6±44.4) and emotional aspects (49.5±46.0) had lower scores among the Short Form-36 domains. The correlation between the two questionnaires proved to be significant. CONCLUSION: The clinical profile of the patients followed the characteristics of distribution and prevalence of these diseases. The impact of diseases on quality of life was observed in several aspects, especially those related to psychological components. Multidisciplinary follow-up, as well as psychological, social, nutritional and educational support should be considered important determinants to maintain or improve the quality of life of these patients.

RESUMO CONTEXTO: A doença inflamatória intestinal engloba entidades patológicas, sendo as principais a doença de Crohn e a retocolite ulcerativa. Ambas se caracterizam por inflamação crônica do intestino. Acomete jovens em idade ativa comprometendo a situação desses pacientes, principalmente a qualidade de vida, que sofre uma forte deterioração frente à condição clínica dos portadores, desde aspectos físicos como também sociais e emocionais. OBJETIVO: Avaliar a qualidade de vida dos pacientes atendidos no ambulatório multidisciplinar de referência para o tratamento de doenças inflamatórias intestinais, através de dados sociodemográficos e de questionários específicos sobre a doença, avaliando os sintomas intestinais e sistêmicos e os aspectos sociais e emocionais. Realizar um comparativo entre os questionários específicos utilizados para obtenção dos dados. MÉTODOS: Realizou-se um estudo de corte transversal em que foram avaliados pacientes com diagnóstico de doença inflamatória intestinal, acompanhados em um ambulatório de referência para o tratamento, entre maio de 2017 e dezembro de 2018. Os participantes responderam ao Protocolo Sociodemográfico e Clínico, ao questionário de qualidade de vida geral SF-36 e ao específico Inflammatory Bowel Disease Questionnaire, além da correlação realizada entre as duas escalas através da Correlação de Pearson (escala métrica), cujos dados foram analisados por meio da estatística descritiva e o nível de significância adotado foi de 5% (P≤0,05%). A amostra contou com 71 pacientes, sendo excluídos do trabalho gestantes ou nutrizes e menores de 18 anos. RESULTADOS: Setenta e um pacientes participaram do estudo, com média de idade de 46,5 anos e desvio padrão de ±13,8; 45 eram portadores de doença de Crohn e 26 possuíam o diagnóstico de retocolite ulcerativa; 73,2% eram mulheres; 64,8% casados; 8,4%, fumantes; 50,7% relataram fazer algum tipo de atividade física. Foi observada boa distribuição dos pacientes entre os domínios de cada questionário; não foram encontrados baixos escores para a qualidade de vida, sendo os sintomas sistêmicos e os aspectos emocionais aqueles com menor pontuação dentre os parâmetros do Inflammatory Bowel Disease Questionnaire; os aspectos físicos (40,6±44,4) e os emocionais (49.5±46.0) tiveram menor pontuação entre os domínios do SF-36. A correlação entre os dois questionários mostrou-se significativa. CONCLUSÃO: O perfil clínico dos pacientes seguiu as características de distribuição e prevalência dessas doenças. O impacto das doenças na qualidade de vida foi observado em diversos aspectos, principalmente os relacionados aos componentes psicológicos. O acompanhamento multidisciplinar, bem como suporte psicológico, social, nutricional e educacional devem ser considerados importantes determinantes para manter ou melhorar a qualidade de vida desses pacientes.

Doença inflamatória do intestino: impacto no score da qualidade de vida, depressão e ansiedade em pacientes atendidos em um centro de atendimento terciário no Brasil / Inflammatory bowel disease: impact on scores of quality of life, depression and anxiety in patients attending a tertiary care center in brazil

ABSTRACT BACKGROUND: Inflammatory bowel disease frequently affects patients at working age, compromising their quality of life in several levels: physical, psychological, familial and social. Few studies have evaluated the impact of Inflammatory bowel disease on quality of life, anxiety and depression in Brazilian patients. OBJECTIVE: Evaluate quality of life and its correlation with psychological aspects of patients with inflammatory bowel disease through the Inflammatory Bowel Disease Questionnaire and Hospital Anxiety and Depression Scale. METHODS: Cross-sectional study; Inflammatory Bowel Disease Questionnaire, Short Form-36 and Hospital Anxiety and Depression Scale were applied to consecutive outpatients in a tertiary referral center for inflammatory bowel disease. Harvey-Bradshaw Index and Truelove scores were used to evaluate Crohn's disease and ulcerative colitis activity. Sample calculation: 113 patients for a significance level of 5%, power of 90% and a correlation coefficient of at least 0.3 between scales. Statistical analysis: Student-t test, Pearson and Spearman correlations. RESULTS: One hundred twenty patients participated in the study; mean age: 41.7 years; female: 58.3%; Crohn's Disease: 69 patients. No low scores for quality of life were found across the four Inflammatory Bowel Disease Questionnaire domains; the Short Form-36 showed low scores in physical limitations (47.2±42.4) and emotional aspects (49.8±43.4); Hospital Anxiety and Depression Scale score presented a mean of 9.5±2.7 for anxiety and 8.7±2.0 for depression. Quality of life was decreased and Hospital Anxiety and Depression Scale did show increased indices of anxiety and depression, in both diseases only when clinically active. CONCLUSION: Inflammatory Bowel Disease Questionnaire and Hospital Anxiety and Depression Scale showed that outpatients of a tertiary care center for inflammatory bowel disease in Brazil presented good quality of life. The worst quality of life was associated with the intensity of the disease activity.

RESUMO CONTEXTO: A doença inflamatória do intestino afeta frequentemente os pacientes em idade de trabalho, comprometendo a qualidade de vida em vários níveis: físico, psicológico, familiar e social. Poucos estudos avaliaram o impacto da doença inflamatória do intestino na qualidade de vida, ansiedade e depressão em pacientes brasileiros. OBJETIVO: Avaliar a qualidade de vida e sua correlação com os aspectos psicológicos dos pacientes com doença inflamatória intestinal através do Questionário da Doença Inflamatória do Intestino e da Escala de Ansiedade e Depressão Hospitalar. MÉTODOS: Foi realizado um estudo transversal, com uma amostra de pacientes consecutivos, nos quais foram aplicados os questionários de perguntas fechadas sobre Qualidade de Vida através dos questionários: Inflammatory Bowel Disease Questionnaire, Short Form Health Survey 36; e ansiedade e depressão: Hospital Anxiety and Depression em suas versões validadas para a língua portuguesa praticada no Brasil. Foram aplicados em pacientes ambulatoriais consecutivos em um centro de referência terciária para doença inflamatória intestinal. Os índices Harvey-Bradshaw Index e Truelove foram utilizados para avaliar a doença de Crohn e a atividade da colite ulcerativa. Cálculo da amostra: 113 pacientes para um nível de significância de 5%, força de 90% e um coeficiente de correlação de pelo menos 0,3 entre as escalas. Análise estatística: teste Student-t, correlações Pearson e Spearman. RESULTADOS: Cento e vinte pacientes participaram do estudo; idade média: 41,7 anos; feminino: 58,3%; doença de Crohn: 69 pacientes. Não foram encontrados escores baixos para a qualidade de vida nos quatro domínios do questionário da Inflammatory Bowel Disease; O Short-Form-36 mostrou baixa pontuação em limitações físicas (47,2±42,4) e aspectos emocionais (49,8±43,4); O índice da escala Hospital Anxiety and Depression apresentou uma média de 9,5±2,7 para ansiedade e 8,7±2,0 para depressão. A qualidade de vida foi diminuída e a Hospital Anxiety and Depression mostrou índices aumentados de ansiedade e depressão, em ambas as doenças somente quando clinicamente ativo. CONCLUSÃO: O questionário da Inflammatory Bowel Disease e a Escala de Hospital Anxiety and Depression mostraram que os pacientes ambulatoriais de um centro de cuidados terciários para doença inflamatória do intestino no Brasil apresentaram boa qualidade de vida. A pior qualidade de vida foi associada à intensidade da atividade da doença.

Recomendaciones del Grupo Español de Trabajo en Enfermedad de Crohn y Colitis Ulcerosa (GETECCU) y de la Confederación de Asociaciones de Enfermedad de Crohn y Colitis Ulcerosa (ACCU) para el manejo de los aspectos psicológicos en la enfermedad inflamatoria intestinal / Recommendations of the Spanish Working Group on Crohn's Disease and Ulcerative Colitis (GETECCU) and the Association of Crohn's Disease and Ulcerative Colitis Patients (ACCU) in the management of psychological problems in Inflammatory Bowel Disease patients

Objetivos. Establecer recomendaciones para el manejo de los aspectos psicológicos de los pacientes con enfermedad inflamatoria intestinal (EII). Métodos. Se llevó a cabo una reunión con un grupo de expertos en EII formado por médicos, psicólogos, enfermeras y representantes de pacientes. Se presentaron resultados de: 1) un grupo focal previo, 2) encuestas a médicos y pacientes y 3) una revisión sistemática sobre instrumentos de cribado de ansiedad y depresión. Se realizó una discusión guiada sobre los aspectos psicológicos y emocionales más importantes en EII, los criterios de derivación apropiados y situaciones a evitar. Se seleccionó el instrumento validado más aplicable a la práctica clínica. Se diseñó un documento con recomendaciones, así como una encuesta Delphi. La encuesta fue enviada al grupo y a un comité científico seleccionado del grupo GETECCU, con el objetivo de establecer el grado de apoyo a las recomendaciones establecidas. Resultados. Se establecieron 15 recomendaciones, pertenecientes a 3 procesos clave: 1) qué pasos dar para identificar problemas psicológicos en consulta de EII, 2) criterios de derivación a profesionales de la salud mental y 3) abordaje de los problemas psicológicos. Conclusiones. Se deben facilitar recursos a los profesionales sanitarios para que puedan tratar estos aspectos en consulta, identificar los trastornos que puedan afectar el curso de la enfermedad o su impacto en la vida del paciente, para ser tratados y seguidos por el profesional más adecuado. Estas recomendaciones pueden servir de base para el rediseño de los servicios o procesos de EII y como justificación para la formación del personal sanitario (AU)

Aims. To establish recommendations for the management of psychological problems affecting patients with inflammatory bowel disease (IBD). Methods. A meeting of a group of IBD experts made up of doctors, psychologists, nurses and patient representatives was held. The following were presented: 1) Results of a previous focal group, 2) Results of doctor and patient surveys, 3) Results of a systematic review of tools for detecting anxiety and depression. A guided discussion was then held about the most important psychological and emotional problems associated with IBD, appropriate referral criteria and situations to be avoided. The validated instrument most applicable to clinical practice was selected. A recommendations document and a Delphi survey were designed. The survey was sent to the group and to a scientific committee of the GETECCU group in order to establish the level of agreement with these recommendations. Results. Fifteen recommendations were established linked to 3 key processes: 1) What steps should be taken to identify psychological problems at an IBD appointment; 2) What are the criteria for referring patients to a mental health specialist; 3) How to approach psychological problems. Conclusions. Resources should be made available to healthcare professionals so that they can treat these problems during consultations, identify the disorders which could affect the clinical course of the disease and determine their impact on the patient's life in order that these can be treated and followed up by the most suitable professional. These recommendations could serve as a basis for redesigning IBD services or processes and as justification for the training of healthcare personnel (AU)