scholarly journals The Emotional Toll of Inflammatory Bowel Disease: Using Machine Learning to Analyze Online Community Forum Discourse

2019 ◽  
Vol 1 (2) ◽  
Author(s):  
Robert Lerrigo ◽  
Johnny T R Coffey ◽  
Joshua L Kravitz ◽  
Priyanka Jadhav ◽  
Azadeh Nikfarjam ◽  
...  
Keyword(s):  
Machine Learning ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Online Community ◽  
Learning Algorithm ◽  
Well Being ◽  
Psychosocial Impacts ◽  
Community Forum ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Background Patients with inflammatory bowel disease are using online community forums (OCFs) to seek emotional support. The impact of OCFs on well-being and their emotional content are unknown. Methods We used an unsupervised machine learning algorithm to identify the thematic content of 51,591 public, online posts from the Crohn’s & Colitis Foundation Community Forum. Results We identified 10,702 (20.8%) posts expressing: gratitude (40%), anxiety/fear (20.8%), empathy (18.2%), anger/frustration (13.4%), hope (13.2%), happiness (10.0%), sadness/depression (5.8%), shame/guilt (2.5%), and/or loneliness (2.5%). A common subtheme was the importance of fostering social support. Conclusions High-throughput, machine learning-directed analysis of OCFs may help identify psychosocial impacts of inflammatory bowel disease on patients and their caregivers.

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.

scholarly journals N19 Understanding the emotional impact of inflammatory bowel disease: looking after nurses looking after patients

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S666-S666
Author(s):  
L Younge ◽  
L Medcalf ◽  
A Hall ◽  
C Shaw
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Psychological Impact ◽  
Well Being ◽  
Emotional Impact ◽  
Learning Needs ◽  
Emotional States ◽  
Inflammatory Bowel ◽  
The Uk ◽  
The Impact

Abstract Background The emotional impact of inflammatory bowel disease (IBD) is well documented. Patients describe distress, anxiety, depression and relationship difficulties, (including with healthcare staff). Nurses working with IBD patients report being emotionally affected, with fears of ‘burnout’, feeling unable to respond helpfully to patients and feelings of guilt, frustration, sadness and anger. Understanding and managing the emotional impact of the work for IBD nurses is an area underrepresented in either research or nursing literature. Methods A collaborative project with IBD nurses and nursing and psychotherapy colleagues from the Tavistock and Portman NHS Foundation Trust developed a one-day event for IBD nurses in the UK. Attendees were self-selecting and the event was supported by Pharma. The conference had three aims: To provide an opportunity to recognise and understand the emotional impact on nurses working with IBD patients, to provide a networking opportunity, and to use information gathered before, during and after the conference to develop a clearer understanding of nurses’ experiences and needs. A pre-conference questionnaire was sent to attendees, observations were made during the conference (noting themes and dilemmas) and an evaluation form was provided. Results 89% agreed/strongly agreed the event provided understanding of how IBD can have an emotional and psychological impact on patients. 89% agreed/strongly agreed the event provided understanding of the emotional impact on nurses working with IBD patients. Eighty-nine per cent agreed/strongly agreed the event provided understanding of ways in which the emotional impact can influence provision of care and decision making in patients with IBD. Ninety-three per cent agreed/strongly agreed the event provided them with ideas for establishing and managing reflective learning opportunities. Seventy-five per cent agreed/strongly agreed the event enabled them to identify different ways of responding to patients they work with. Conclusion Feedback from attendees identified a need and an expressed wish by IBD nurses to understand and explore how they are affected by their work, in relation to maintaining therapeutic and safe relationships with patients and maintaining their own well-being and job satisfaction. Learning needs relating to training in supervision, developing skills in responding to patients’ emotional states, tools for looking after one’s self and opportunities for group discussions and learning were identified. There is an opportunity to develop further learning and training events in relation to these identified needs. Further exploration of accessibility, funding and evaluation would be beneficial in identifying the impact, if any, of further training.

scholarly journals Fr103 STRATIFYING THE IMPACT OF COVID-19 PANDEMIC ON THE EMOTIONAL AND PHYSICAL WELL-BEING OF PATIENTS WITH INFLAMMATORY BOWEL DISEASE.

2021 ◽  
Vol 160 (6) ◽  
pp. S-219-S-220
Author(s):  
Mohammed El-Dallal ◽  
Ariana Saroufim ◽  
Hannah Systrom ◽  
Sarah Ballou ◽  
Adam S. Cheifetz ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Well Being ◽  
Inflammatory Bowel ◽  
The Impact

scholarly journals N27 What people want! Exploring inflammatory bowel disease patients’ perspectives on healthcare professionals addressing sexual well-being

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S669-S670
Author(s):  
S Fourie ◽  
W Czuber-Dochan ◽  
C Norton
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Healthcare Professionals ◽  
Clinical Care ◽  
Holistic Approach ◽  
Well Being ◽  
Structured Interviews ◽  
Time Space ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Background Inflammatory bowel disease (IBD) affects every aspect of one’s life, yet no routine assessment for the impact on sexuality is made. Our aim was to explore patients’ perspective on healthcare professionals (HCPs) addressing sexuality/sexual well-being concerns. Methods This was a qualitative narrative study. Inclusion criteria were any sexual orientation and with known IBD for longer than 18 months. Data were collected via semi structured interviews and anonymous narrative accounts submitted via Google Forms. Thematic analysis was used to analyse the data. Results Fourteen adults, 4 male and 10 female, took part. Eleven participants were from the UK, one from the USA of America and one for South Africa. The following main themes and subthemes were identified: I cannot imagine talking about my sex life (a difficult topic; there is not enough time), Those who talked about sex, talked badly (nobody volunteered information; badly handled conversations), Still living whilst unwell (sex is an important part of my life; sex issues break down relationships, medicalised body), IBD ruined my sex life (feeling unattractive; feelings of shame and embarrassment), I feel unheard (HCPs don’t open the discussion; sex not taken seriously), I’m a person, not my IBD (holistic approach to care; time, space and ways to talk about sex). The findings reflect the importance of sexual well-being to those living with IBD, the experiences of such conversations, barriers to conversations with HCPs on sexual well-being, and suggestions on how HCPs should address their unmet needs. The importance of discussing intimacy and sexuality was emphasised, as participants felt their sexual well-being was considerably affected by IBD. The majority reported that HCPs did not initiate discussions on sexual well-being, nor did they understand the impact of IBD on sexual well-being, with a distinct accent on the perceived lack of a holistic approach to their care. Therefore, participants made suggestions for practice, such as provision of information related to sexual well-being in the form of leaflets, additionally to HCPs raising the issue. Conclusion Our findings indicate that communicating on sexuality/sexual well-being is a problematic area of IBD care. HCPs must be cognisant of the sexual well-being concerns and needs of those living with IBD, who want this topic discussed routinely, as part of a holistic approach to their clinical care.

scholarly journals Short Inflammatory Bowel Disease Questionnaire: translation and validation to the Portuguese language

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Joana Roseira ◽  
Helena T. Sousa ◽  
Ana Marreiros ◽  
Luís F. Contente ◽  
Fernando Magro
Keyword(s):  
Inflammatory Bowel Disease ◽  
Internal Consistency ◽  
Bowel Disease ◽  
Well Being ◽  
Score Distribution ◽  
Inflammatory Bowel Disease Questionnaire ◽  
Portuguese Version ◽  
Inflammatory Bowel ◽  
The Impact ◽  
Disease Questionnaire

Abstract Background The Short Inflammatory Bowel Disease Questionnaire (SIBDQ) is a widely used instrument to assess Health-related Quality of Life (HRQoL) among inflammatory bowel disease (IBD) patients. Our aim was to translate and adapt the SIBDQ so that it could be adequately used in Portugal. Methods This is a prospective design cohort study undertaken at a tertiary hospital. This study took place simultaneously with the first part of the SexIDI study, a study aiming to assess the impact of IBD on patients’ sexual QoL. The original SIBDQ was translated by two independent translators and adapted by an IBD expert panel following the opinions of a convenient sample of 5 IBD patients. Afterwards, IBD patients from the outpatient clinic were consecutively invited to fill the Portuguese version of the questionnaire (SIBDQ-PT) at three different timepoints (0, 2, 4 weeks). Ninety-two patients completed the SIBDQ-PT at baseline, whereas 33 did so after 2 and 4 weeks (approximately). Statistical analysis was performed using SPSS version 25, and the following aspects were analysed: reliability (through internal consistency, test–retest and intraclass correlation), validity (through exploratory factor analysis [EFA], and Pearson correlation coefficient for linear correlations), score distribution, and responsiveness analysis (through t-student tests). Results Overall, SIBDQ-PT was shown to have a high internal consistency (Cronbach's α = 0.80) and a high test–retest reliability (0.80 [CI 0.74–0.86] and 0.69 [CI 0.50–0.82]). EFA detected four dimensions—bowel, social, emotional and systemic. As expected, an overall SIBDQ-PT score was positively correlated with sexual satisfaction (r = 0.27; p < 0.05) and negatively correlated with depression (r = − 0.63; p < 0.01). Moreover, SIBDQ-PT was found to have an adequate score distribution, and to be responsive, as there was a significant subscore change for patients who reported an “overall worsening in general well-being” (0.93 ± 0.13 decrease; p < 0.01). Conclusions The Portuguese version of the SIBDQ hereby presented is a reliable, valid and responsive instrument that can be used to measure HRQoL among Portuguese IBD patients.

scholarly journals P105 Coping in Inflammatory Bowel Disease: insights from the Crohn’s and Colitis UK national survey

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S199-S200
Author(s):  
J Marshall Mr ◽  
G Rowse ◽  
S Hollobone ◽  
S Afhim ◽  
P Oliver
Keyword(s):  
Inflammatory Bowel Disease ◽  
Disease Activity ◽  
National Survey ◽  
Bowel Disease ◽  
Personal Control ◽  
Well Being ◽  
Small Sample ◽  
Factors Associated ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Background Inflammatory bowel disease (IBD) is a chronic condition that adversely affects quality of life (QoL) and well-being. Factors associated with coping in IBD include disease activity, the presence of arthropathy and illness perceptions such as personal control. The evidence in this field is, however, limited by small sample sizes. The aim of this study was to use data from a national survey to identify factors associated with coping in a large sample of IBD patients. Identification of factors associated with coping may help inform the development of targeted interventions to improve psychological well-being. Methods A national postal and online survey was conducted by the charity Crohn’s & Colitis UK of its members in 2018. Participants were asked to complete a questionnaire which was co-produced by the charity and University of Sheffield, following focus groups of key stakeholders. The survey collected demographic and disease-related information as well as Likert item responses to questions relating to well-being, including coping. The response rate was 22.2%. To examine factors associated with coping, ordinal regression analysis was performed. Results are presented as adjusted odds ratios (ORs). Results 8012 respondents were included in the analyses. The mean age of respondents was 45 years (SD =16 years) with 69% being female. The majority of respondents had a diagnosis of Crohn’s disease (78%) with 53% of participants self-reporting that they were in remission at the time of the survey. In multivariable analyses, the adjusted odds of females reporting difficulty in coping was 1.6 times higher than that for males (95% CI 1.43–1.79). The odds of those with active disease reporting more difficulty in coping were approximately twice that of those in remission (95% CI 2.38–2.93). Several well-being factors were found to be associated with coping, even after adjusting for personal and disease related characteristics (such as severity of symptoms and disease activity). Participants who had reported less understanding and felt they had less control of their IBD, had higher odds of difficulty in coping with their disease (95% CI 0.76–0.85 & 0.64–0.72 respectively). Participants who experienced disease-related stigma were also more likely to have difficulty in coping (95% CI for 1.99–2.26). Conclusion In this large survey of IBD patients, coping was associated with gender, disease characteristics and a number of psychological factors, which may be amenable to intervention to improve the QoL and well-being of patients with IBD. Efforts are required to improve public awareness of the impact of IBD in order to reduce stigma. Further research is required to understand these relationships and constructs through the use of validated measures.

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 P137 Preliminary validation of a multi-stage machine learning algorithm to assess histological inflammation in inflammatory bowel disease

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S224-S225
Author(s):  
E Hagendorn ◽  
S Karsen ◽  
R Pai ◽  
V Jairath ◽  
H Knight ◽  
...  
Keyword(s):  
Machine Learning ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Plasma Cells ◽  
Learning Algorithm ◽  
Ground Truth ◽  
Cell Types ◽  
Test Dataset ◽  
Preliminary Validation ◽  
Inflammatory Bowel

Abstract Background The histologic assessment of inflammatory bowel disease (IBD) relies on qualitative grading methods. Although widely accepted, these instruments are time consuming, require specialized training, and suffer from inter-rater disagreement. For these reasons there is a need for more consistent and less biased methods to assess IBD histology. Methods The algorithm was initially developed using hematoxylin and eosin (H&E) stained whole slide images of colon biopsies (238 ulcerative colitis [UC], 30 Crohn’s Disease [CD], and 28 endoscopically normal adjacent [ENA]). The first two stages implement convolutional neural networks (CNN) which segment 11 key anatomical features (Figure 1). The third stage extracts the features and models them for prediction. Results The first stage of the algorithm was validated on an independent test dataset by calculating the intersection-over-union (IoU) for the ground truth and prediction masks, resulting in a value of 0.97. A preliminary validation for stage 2 was performed by randomly selecting 30 unique biopsy sections from the test dataset and applying a 150um x 150um counting frame. An expert gastrointestinal pathologist confirmed correct cell identification by the algorithm for three of the primary inflammatory cell types: plasma cells, eosinophils, and neutrophils which resulted in a sensitivity/specificity of 0.76/0.99, 0.78/1.00, and 1.00/0.98 respectively. The final stage predicts RHI grades which could be directly compared to pathologist reads (Figure 2, 3, and 4). Conclusion This is the first study to demonstrate the value of machine learning to assess histologic activity in IBD. These methods lay the foundations for future work, and we believe stages 1 and 2 can be explored independently to statistically characterize the histologic changes of IBD, enabling the improvement of preexisting grading systems.

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