Stigma and Disclosure in Patients With Inflammatory Bowel Disease

2019 ◽  
Vol 26 (7) ◽  
pp. 1010-1016
Author(s):  
Ling Guo ◽  
Jacob Rohde ◽  
Francis A Farraye
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Disease Burden ◽  
Well Being ◽  
Public Perceptions ◽  
Research Areas ◽  
Medical Issues ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Stigma in patients suffering from chronic disease is associated with worse clinical outcomes and secondary medical issues such as depression, anxiety, and decreased quality of life. We believe various forms of stigma can have different clinical significance in patients with inflammatory bowel disease (IBD). With further insight and research, we suggest that these forms of stigma could be identified and targeted by researchers or clinicians to lessen the psychological disease burden in patients and to potentially improve their physical well-being. In the current review, we discuss public perceptions, knowledge, and stigmatization of IBD, the prevalence of various forms of IBD stigma, and the impact of such stigma on patient outcomes. We also discuss IBD disclosure, its association with stigma, and the tendencies and effects of such disclosures among youth and adult patient populations. We finish the review by highlighting possible modalities and research areas for future IBD interventions.

scholarly journals The Impact of Inflammatory Bowel Disease in Canada 2018: Quality of Life

2018 ◽  
Vol 2 (Supplement_1) ◽  
pp. S42-S48 ◽  
Author(s):  
Jennifer L Jones ◽  
Geoffrey C Nguyen ◽  
Eric I Benchimol ◽  
Charles N Bernstein ◽  
Alain Bitton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Inflammatory Bowel ◽  
The Impact

scholarly journals P262 Trends in the prevalence and severity of anaemia in paediatric patients with inflammatory bowel disease in the last decade

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S281-S281
Author(s):  
S Y Geng ◽  
Z Ridha ◽  
B L Pham ◽  
E Tran ◽  
A Peixoto ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Iron Deficiency ◽  
Disease Severity ◽  
Bowel Disease ◽  
Paediatric Patients ◽  
Intestinal Involvement ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Background Anaemia is one of the most common extraintestinal manifestations in patients with inflammatory bowel disease(IBD) at diagnosis. Studies have shown that anaemia was associated with low levels of quality of life, which improves with the correction of anaemia in adults. Recent data have shown an increase in the incidence and severity of paediatric IBD. We aim to investigate the trends in the prevalence of anaemia in children at diagnosis of IBD in the last decade. The secondary aim was to investigate the associations between haemoglobin (Hb) levels and disease characteristics. Methods Eligible patients (age ≤18 years, diagnosed with IBD from 2009 to 2018) were retrospectively identified through a prospective IBD database maintained at CHU Sainte-Justine, Montreal, Canada. Disease localisation and phenotype were defined according to the Paris Classification of IBD. Anaemia was defined by Hb levels according to WHO targets. The annual prevalence of anaemia was calculated according to subtype (inflammatory vs. iron deficiency). The Pediatric Crohn’s Disease Activity Index(PCDAI) and the Pediatric ulcerative colitis Activity(PUCAI) Index were used to assess the disease severity at diagnosis. Results We included 887 patients (439 females), mean(SD) age of 13.1 (3.4) years. Of these, 519 (58.5%) were identified with anaemia within 30 days of diagnosis. The median (IQR) Hb level at diagnosis was 108 (98 −114) g/dl. Severe anaemia(< 70 g/dl) was present in 1.8 % of patients. The prevalence of anaemia at diagnosis remained relatively stable ranging from 60.2% in 2009 to 60.4% in 2018. The annual proportion of inflammatory vs. iron-deficiency anaemia is displayed in Figure 1. Anaemia was more prevalent in CD (62.2%) than UC (57.9%) or IBD-U(39.6%). The median(IQR) PCDAI and PUCAI were respectively 37.5 (27.5–47.5) and 55.0 (40.0–65.0) in the anaemic group as compared with 27.5 (20.0–37.50) and 35.0 (25.0–55.0) in the non-anaemic group; p < 0.0001. Patients with anaemia had a lower BMI z-score [median(IQR) −0.84(−1.84–0.08)] than the non-anaemic patients[median(IQR) −0.38(−1.21–0.43)]; p < 0.001. The prevalence of anaemia correlated significantly with disease location: upper intestinal involvement [L4a(67.7%) L4b(63.6%) L4aL4b(60.7%) none (52.8%)] p = 0.024 for CD; for UC[E1(21.1%) E2(44.4%) E3(75.0%) E4 (71.1%)] p < 0.0001. A moderate correlation was found between Hb levels and C-reactive protein (r = −0.312, 95% CI: −0.378 to −0.243, p < 0.0001). Conclusion Anaemia remains a prevalent symptom in paediatric patients with IBD, and it is correlated with the extent of intestinal involvement and disease severity. The impact of anaemia at diagnosis and during follow-up on the levels of quality of life and physical activity is currently under investigation.

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.

Mo1829 - The Impact of Serum Cortisol on Quality of Life and Dysautonomia in Inflammatory Bowel Disease

2018 ◽  
Vol 154 (6) ◽  
pp. S-817
Author(s):  
Benjamin H. Click ◽  
Alyce J. Anderson ◽  
Claudia Ramos Rivers ◽  
Marc Schwartz ◽  
Arthur Barrie ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Serum Cortisol ◽  
Inflammatory Bowel ◽  
The Impact

scholarly journals P248 Assessment of health-related quality of life of paediatric Inflammatory Bowel Disease patients through the IMPACT-III questionnaire

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S289-S289
Author(s):  
J A Vázquez Gómez ◽  
M Velasco Rodríguez-Belvís ◽  
L M Palomino Pérez ◽  
P Sánchez Llorente ◽  
C Aguilar Ladrón de Guevara ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Body Image ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Background Health-related quality of life (HRQOL) is a multi-dimensional concept used to examine the impact of health status on their global well-being. The IMPACT-III is a 35-item questionnaire specifically designed to evaluate the quality of life of patients with paediatric Inflammatory Bowel Disease (pIBD). This questionnaire had its origin in 1999 in Canada (Otley et al.) and, since then, it has been adapted to many languages. The objective of this study was to assess the quality of life of pIBD patients using the IMPACT-III questionnaire and to identify specific needs according to the patient’s profile. Methods An observational, descriptive, and retrospective study was carried out in November 2020, including the pIBD patients undergoing follow-up in a tertiary hospital that have previously completed the IMPACT-III questionnaire. Epidemiological and clinical data were anonymously retrieved from the electronic medical records. We established three blocks of IMPACT-III items according to physical, emotional and social well-being, or to the perception of body image. The results of each block and totals were compared according to gender, age, diagnosis, time of evolution, activity and treatment. To make the comparison, the Mann-Whitney U test for independent samples for 2 groups and the Kruskal-Wallis test for 3 or more independent groups were used. The statistical analysis was performed using SPSS software and the results were considered statistically significant when reaching a bilateral critical level (p) ≤ 0.05, with a 95% confidence interval. Results We included a total of 40 patients. There were no significant differences according to gender, type of IBD or type of treatment. The group of adolescents obtained a higher score in the body image block (p = 0.009). Patients with over two years of evolution of the disease obtained statistically significantly higher scores in the physical well-being block (p = 0.027). In patients who filled out the questionnaire during a flare, the scores on questions of physical well-being (p = 0.007), emotional and social (p = 0.037), as well as total (p = 0.012) were significantly higher. Overall, 31 patients (77.5%) answered that IBD had negatively affected their family. Conclusion Our data suggest that patients with a longer evolution time, adolescents and patients suffering an active flare seem to report a worst HRQOL. Patients with the mentioned characteristics constitute a vulnerable population with special care needs that should be addressed from an interdisciplinary point of view. Despite the limitations of the retrospective design and the scarce number of patients, our results indicate that family-centered care should be a priority.

scholarly journals N07 A qualitative study of the impact of inflammatory bowel disease on partners

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S611-S612
Author(s):  
P Thapwong ◽  
C Norton ◽  
H Terry ◽  
W Czuber-Dochan
Keyword(s):  
Inflammatory Bowel Disease ◽  
Everyday Life ◽  
Bowel Disease ◽  
Social Life ◽  
Negative Impact ◽  
Family Members ◽  
Well Being ◽  
Health And Social Care ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Background Inflammatory Bowel Disease (IBD) not only impacts the quality of life of the patient, but also affects their family members. Studies to date have provided an understanding of impact of IBD and IBD implications for people with IBD. However, little is known about the impact of IBD on their family members. Therefore, the current study aimed to explore the lived experience of people with IBD and their family members regarding the impacts of IBD on family members and their coping methods. Methods Twelve participants, including six people with IBD with their six partners, were purposively selected, no other family members (parents / children, sibling) came forward to participate in the study. The in-depth, semi-structured online interviews were conducted via Skype, Zoom, or Microsoft Teams between February-June 2020. Interviews were audio-recorded, transcribed verbatim, and analysed using inductive thematic analysis by Braun and Clarke. Results Four main themes emerged during the analysis under the central theme “our relationship with IBD, for better or worse”. IBD affected the partners in terms of their own relationship, relationship with others, everyday life, and emotional and mental well-being. The theme “our relationship” showed the impact of IBD on the relationship between a couple, including the intimate relationship, family planning, role change as partner and carer, and the importance of honest communication. IBD also affected wider relationships with family, children, and social life, but teamwork could mediate negative impact in relationships. Emotional well-being was impacted by living in constant fear and guilt. Humour and knowledge of IBD reduced negative impacts. IBD impacts on everyday life (diet, finances, and travel) for both patients and partners. Planning for uncertain situations was helpful to reduce restrictions. Conclusion The study provides an understanding of IBD impact on partners and the coping strategies from patients and partners’ perspectives. There are wide-ranging implications for health and social care professionals caring for people with IBD and their families. Social support has been recognised as a vital buffering mechanism in facilitating an individual’s adjustment to IBD. Healthcare professionals and researchers may integrate a bio-psycho-social approach into their work with IBD family members. There is a need to develop interventions to help family members of IBD patients to better cope with the illness and to have a more fulfilling life.

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