scholarly journals Shame and emotion regulation in inflammatory bowel disease: Effects on psychosocial functioning

2017 ◽  
Vol 25 (4) ◽  
pp. 511-521 ◽  
Author(s):  
Inês A Trindade ◽  
Cláudia Ferreira ◽  
José Pinto-Gouveia
Keyword(s):  
Inflammatory Bowel Disease ◽  
Chronic Illness ◽  
Psychological Health ◽  
Bowel Disease ◽  
Indirect Effects ◽  
Psychosocial Functioning ◽  
Online Survey ◽  
Self Report ◽  
Inflammatory Bowel ◽  
The Impact

Although patients with inflammatory bowel disease seem to be prone to high levels of shame, the mechanisms behind the impact of chronic illness–related shame on patients’ functioning have not been explored yet. This study aims to address these gaps using a sample of 161 patients with inflammatory bowel disease who completed self-report measures on an online survey. The results from path analyses showed that chronic illness–related shame presented direct and indirect effects on psychological health ( R2 = .66) and social relationships ( R2 = .46). The indirect effects were mediated by experiential avoidance and uncommitted living. Possible explanations to these findings and clinical implications are discussed.

scholarly journals Best Practice Guidance for Adult Infusion Centres during the COVID-19 Pandemic: Report from the COVID-19 International Organization for the Study of IBD [IOIBD] Task Force

2020 ◽  
Vol 14 (Supplement_3) ◽  
pp. S785-S790
Author(s):  
Iris Dotan ◽  
Remo Panaccione ◽  
Gilaad G Kaplan ◽  
Colm O’Morain ◽  
James O Lindsay ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Best Practice ◽  
Online Survey ◽  
Task Force ◽  
International Organization ◽  
Care Givers ◽  
Global Guidance ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Infusion centres are a central part in the management of patients with inflammatory bowel disease [IBD] and could be a source of transmission of SARS-COV-2. Here we aimed to develop global guidance for best practices of infusion centres for IBD patients and to determine the impact of the COVID-19 pandemic on these centres. Under the auspices of the International Organization for the Study of Inflammatory Bowel Disease [IOIBD], a task force [TF] was formed, an online survey was developed to query infusion centre protocols during COVID-19, and recommendations were made, based on TF experience and opinion. Recommendations focus mainly on patients screening, infusion centres re-organization, personnel protection, and protocol modifications such as shortening infusion duration or replacing it with subcutaneous alternatives. Implementing these recommendations will hopefully reduce exposure of both IBD patients and care givers to SARS-COV-2 and improve the function and safety of infusion centres during the COVID-19 pandemic as well as potential future threats.

scholarly journals Work Productivity Loss in Inflammatory Bowel Disease Patients in Turkey

2020 ◽  
Vol 2020 ◽  
pp. 1-6 ◽  
Author(s):  
Firdevs Topal ◽  
Hakan Camyar ◽  
Elif Saritas Yuksel ◽  
Suleyman Gunay ◽  
Fatih Topal ◽  
...  
Keyword(s):  
Ulcerative Colitis ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Online Survey ◽  
Productivity Loss ◽  
Young Patients ◽  
Significant Difference ◽  
Inflammatory Bowel ◽  
The Impact

Background. Beyond the medical treatment in inflammatory bowel disease (IBD), there are other issues which influence the quality of life adversely. The aim of this study was to determine the impact of the IBD patients’ illness on working and education life. Method. The participants were invited to participate in the online survey from the Turkish Crohn’s and Ulcerative Colitis Patient Association network. The data was analysed and then discussed to improve the health-related quality of working and education life. Results. One hundred and fifteen patients had ulcerative colitis (UC) (57.2%), and 86 had Crohn’s disease (CD) (42.8%). There was a statistically significant difference in UC between retirement age group 1 (<40 age) and groups 2 (40-49 ages) and 4 (60-65 ages) (p<0.05). There was the same significant difference in CD. Even though the data did not have significant statistical difference, there was clustering around negative perceptions the patients have about their working and education lives. Conclusion. Our survey revealed a very strong causative relationship between work and IBD involving problems before, during, and at the end of employment. Young patients lower their career expectations, and that announces a clear need to support them and improve career guidance.

Inflammatory bowel disease symptoms and cognitive fusion's impact on psychological health: An 18-month prospective study

2017 ◽  
Vol 41 (S1) ◽  
pp. S355-S355 ◽  
Author(s):  
I.A. Trindade ◽  
C. Ferreira ◽  
J. Pinto-Gouveia
Keyword(s):  
Inflammatory Bowel Disease ◽  
Emotion Regulation ◽  
Psychological Health ◽  
Bowel Disease ◽  
Psychological Functioning ◽  
Abdominal Distension ◽  
Self Report ◽  
Hierarchical Regression ◽  
Cognitive Fusion ◽  
Inflammatory Bowel

Although inflammatory bowel disease (IBD) is known to be associated with lower psychological health, research regarding which specific symptoms may lead to psychological dysfunction in IBD patients is inexistent. Further, the role played by emotion regulation, including the maladaptive process of cognitive fusion, in IBD patients’ psychological functioning is also scarcely explored in this population. The present study aimed at filling these research gaps. Two hundred and sixteen patients diagnosed with IBD filled self-report instruments on an online platform in three times. These waves of assessment occurred at baseline, and 9 and 18 months later. Results revealed that of the 10 measured IBD symptoms, only fatigue, bloody stools and abdominal distension at baseline were negatively associated patients’ level of psychological health at Wave 3. Nevertheless, a hierarchical regression analysis demonstrated that none of these symptoms were significant predictors of psychological health measured 18 months later. When cognitive fusion at baseline was added to the model, it became the only significant predictor of psychological health at Wave 3, with an effect of −0.34 (P < 0.001). These findings suggest that it is not the experience of physical symptomatology that directly leads to lower psychological health in IBD patients, but rather the way patients deal with adverse internal experiences, i.e., the type of emotion regulation involved. This study reveals cognitive fusion as a harmful process for the determination of IBD patients’ psychological functioning. Future studies should thus explore the meditational effect of cognitive fusion in the association between IBD symptomatology and decreased psychological health.Disclosure of interestThe authors have not supplied their declaration of competing interest.

scholarly journals P185 Psychosocial impact of the COVID-19 pandemic on patients with inflammatory bowel disease in Spain

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S255-S256
Author(s):  
A Hernandez Camba ◽  
L Ramos ◽  
M B Madrid Álvarez ◽  
L Pérez-Méndez ◽  
P Nos ◽  
...  
Keyword(s):  
Mental Health ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Online Survey ◽  
Psychosocial Impact ◽  
Self Report ◽  
Indeterminate Colitis ◽  
Sleep Habits ◽  
Cross Sectional ◽  
Inflammatory Bowel

Abstract Background Few studies have examined the effects of COVID-19 on the mental health of patients with inflammatory bowel disease (IBD), who are already at higher risk of depression, anxiety and stress than the general population. This cross-sectional study was conducted to assess the psychosocial impact of COVID-19 on patients with IBD in Spain during lockdown and the first wave of the pandemic. Methods A self-report questionnaire that integrated the Spanish version of the Depression, Anxiety and Stress Scale–21 items (DASS-21) and the Perceived Stress Questionnaire (PSS) was designed to gather sociodemographic data and information related to the effects of COVID-19 on the lives of IBD patients. Twelve IBD units invited their patients to answer the anonymous online survey via email or by using a QR code displayed at the unit. A link to the survey was also published on the GETECCU (Spanish IBD group) website and social media account. The survey was conducted between the 1st July and the 25th August 2020. Results Of the 693 survey participants with IBD, 67% were female, mean age 43 (12y SD). 61% had ulcerative colitis, 36% Crohn’s disease 3% indeterminate colitis. Only 15 participants were diagnosed with COVID-19: 3 of them required hospital admission and none required ICU admission. Physical activity levels and sleep habits were adversely affected for 79% and 67% of respondents, respectively. In addition, 39% reported a decrease in income due to the pandemic. 95% report having complied with IBD treatment during the COVID-19 pandemic, despite over 50% of them feeling that they were more at risk of infection due to their medication. DASS-21 scores indicate that during the lockdown the estimated prevalence of depression was 10.5% [95% CI 8.2–13%], anxiety 20% [95% CI –17–23%] and stress 18% [95% CI 8.2–13%]. Multivariate analysis is described in table 1. Conclusion In the short-term, lockdown during the COVID-19 pandemic seemed to have an impact on the mental health of our IBD patients in Spain. Further follow-up studies should be carried out to determine the real long-term impact, as it’s known that the wellbeing of this population might be affected because of IBD itself.

scholarly journals Parent and Family Functioning in Pediatric Inflammatory Bowel Disease

Children ◽  
2020 ◽  
Vol 7 (10) ◽  
pp. 188
Author(s):  
Grace Cushman ◽  
Sharon Shih ◽  
Bonney Reed
Keyword(s):  
Inflammatory Bowel Disease ◽  
Family Functioning ◽  
Bowel Disease ◽  
Psychosocial Functioning ◽  
Future Research ◽  
Pediatric Inflammatory Bowel Disease ◽  
Current Review ◽  
Inflammatory Bowel ◽  
The Impact ◽  
Pediatric Ibd

Although the impact of pediatric inflammatory bowel disease (IBD) extends beyond the patient to their parents and families, the focus of previous literature has largely been on investigating the patient’s medical and psychosocial functioning, with less consideration of the family system. Having a comprehensive understanding of parent and family functioning within the context of pediatric IBD is important given the role parents and family members have in the successful management of the disease and caring of the child. The current review paper aggregates the empirical research regarding parent and family functioning, including comparisons to normative samples, other illness groups, and how functioning relates to child psychosocial and health outcomes. Extant literature on parents and families in pediatric IBD has largely focused on the variables of parenting stress, parent psychosocial functioning, parent quality of life, and family functioning. Summary findings elucidate the complex relationships between parents, families, and children affected by IBD and highlight the importance of assessing parent and family functioning within pediatric IBD. The current review also offers implications for clinical practice, notes the limitations of the present literature, and provides recommendations for future research.

scholarly journals Inflammatory bowel disease advice lines during the COVID-19 pandemic: a retrospective service evaluation

2021 ◽  
pp. 38-49
Author(s):  
Pearl Avery ◽  
Lisa Younge ◽  
Lesley Dibley ◽  
Jonathan Segal
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Online Survey ◽  
Healthcare Delivery ◽  
Service Evaluation ◽  
Clinical Team ◽  
Professional Networks ◽  
Inflammatory Bowel ◽  
Specialist Nurses ◽  
The Impact

Background: The COVID-19 pandemic significantly impacted on healthcare delivery worldwide, affecting many services, including those for inflammatory bowel disease (IBD). Aims: To evaluate the impact of COVID-19 on worldwide IBD telephone advice-line services. Methods: A mixed-methods 25-item online survey was distributed to IBD specialist nurses globally using IBD professional networks, email and social media. Data were analysed using descriptive statistics (quantitative data) and content and thematic analysis (qualitative data). Findings: Across 21 countries, 182 IBD specialists participated. With adjustments, all advice lines remained functional. Call content changed, and call volume increased exponentially. Strategies were recommended to maintain services. IBD specialist nurses faced considerable challenges, including overwhelming workload, disrupted referral pathways, fragmented IBD clinical team support, isolation and greatly lowered morale. Conclusions: To cope with similar future crises, advice-line training, resilience coaching and ringfencing of the IBD clinical team are essential. Development of global guidelines for maintaining advice-line functionality in any scenario is recommended.

scholarly journals The Inflammatory Bowel Disease Symptom Inventory: A Patient-report Scale for Research and Clinical Application

2019 ◽  
Vol 25 (8) ◽  
pp. 1277-1290 ◽  
Author(s):  
Kathryn A Sexton ◽  
John R Walker ◽  
Laura E Targownik ◽  
Lesley A Graff ◽  
Clove Haviva ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Factor Analysis ◽  
Bowel Disease ◽  
Convergent Validity ◽  
Short Form ◽  
Self Report ◽  
Measurement Properties ◽  
Systemic Complications ◽  
Patient Reported ◽  
Inflammatory Bowel

Abstract Objectives Existing measures of inflammatory bowel disease (IBD) symptoms are not well suited to self-report, inadequate in measurement properties, insufficiently specific, or burdensome for brief or repeated administration. We aimed to develop a patient-reported outcome measure to assess a broader range of IBD symptoms. Methods The IBD Symptoms Inventory (IBDSI) was developed by adapting symptom items from existing clinician-rated or diary-format inventories; after factor analysis, 38 items were retained on 5 subscales: bowel symptoms, abdominal discomfort, fatigue, bowel complications, and systemic complications. Participants completed the IBDSI and other self-report measures during a clinic visit. A nurse administered the Harvey Bradshaw Index (HBI) for Crohn’s disease (CD) or the Powell-Tuck Index (PTI) for ulcerative colitis (UC), and a gastroenterologist completed a global assessment of disease severity (PGA). Results The 267 participants with CD (n = 142) or UC (n = 125), ages 18 to 81 (M = 43.4, SD = 14.6) were 58.1% female, with a mean disease duration of 13.9 (SD = 10.5) years. Confirmatory factor analysis supported the 5 subscales. The total scale and subscales showed good reliability and significant correlations with self-report symptom and IBD quality of life measures, the HBI, PTI, and PGA. Conclusions The IBDSI showed strong measurement properties: a supported factor structure, very good internal consistency, convergent validity, and excellent sensitivity and specificity to clinician-rated active disease. Self-report HBI and PTI items, when extracted from this measure, produced scores comparable to clinician-administered versions. The 38-item IBDSI, or 26-item short form, can be used as a brief survey of common IBD symptoms in clinic or research settings.

scholarly journals Longitudinal Trajectory of Fatigue in Patients With Inflammatory Bowel Disease: A Prospective Study

2020 ◽  
Author(s):  
Nienke Z Borren ◽  
Millie D Long ◽  
Robert S Sandler ◽  
Ashwin N Ananthakrishnan
Keyword(s):  
Ulcerative Colitis ◽  
Inflammatory Bowel Disease ◽  
Chronic Illness ◽  
Prospective Study ◽  
Functional Assessment ◽  
Bowel Disease ◽  
Symptom Resolution ◽  
Chronic Illness Therapy ◽  
Inflammatory Bowel ◽  
A Prospective Study

Abstract Background Fatigue is a disabling symptom in patients with inflammatory bowel disease (IBD). Its prevalence, mechanism, and impact remain poorly understood. We determined changes in fatigue status over time and identified predictors of incident or resolving fatigue. Methods This was a prospective study nested within the IBD Partners cohort. Participants prospectively completed the Multidimensional Fatigue Inventory and the Functional Assessment of Chronic Illness Therapy-Fatigue at baseline, 6 months, and 12 months. A Functional Assessment of Chronic Illness Therapy-Fatigue score ≤43 defined significant fatigue. Multivariable regression models using baseline covariates were used to identify risk factors for incident fatigue at 6 months and to predict the resolution of fatigue. Results A total of 2429 patients (1605 with Crohn disease, 824 with ulcerative colitis) completed a baseline assessment, and 1057 completed a second assessment at 6 months. Persistent fatigue (at baseline and at 6 months) was the most common pattern, affecting two-thirds (65.8%) of patients. One-sixth (15.7%) of patients had fatigue at 1 timepoint, whereas fewer than one-fifth (18.5%) of patients never reported fatigue. Among patients not fatigued at baseline, 26% developed fatigue at 6 months. The strongest predictor of incident fatigue was sleep disturbance at baseline (odds ratio, 2.91; 95% confidence interval, 1.48–5.72). In contrast, only 12.3% of those with fatigue at baseline had symptom resolution by month 6. Resolution was more likely in patients with a diagnosis of ulcerative colitis, quiescent disease, and an absence of significant psychological comorbidity. Conclusions Fatigue is common in patients with IBD. However, only a few fatigued patients experience symptom resolution at 6 or 12 months, suggesting the need for novel interventions to ameliorate its impact.

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