P690. Worries of patients with inflammatory bowel disease: an indicator of well-being?—results of survey amongst 1 096 participants in a European bilingual clinical cohort

Diet is a key modifier of risk of inflammatory bowel disease development and potentially a treatment option in patients with established disease. International organisations in gastroenterology and inflammatory bowel disease have published guidelines for the role of diet in disease onset and its management. Here, we discuss the major overarching themes arising from these guidelines and appraise recent literature on the role of diet for inflammatory bowel disease prevention, treatment of active disease and maintenance of remission, considering these themes. Except for exclusive enteral nutrition in active Crohn’s disease, we currently possess very little evidence to make any further dietary recommendations for the management of inflammatory bowel disease. There is also currently uncertainty on the extrapolation of epidemiological dietary signals on risk of disease development and preclinical experiments in animal models to management, once disease is established. Until high-quality evidence from clinical research becomes available, the only specific recommendations for inflammatory bowel disease we might safely give are those of healthy eating which apply for the general population for overall health and well-being.

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Spiritual Well-Being and Mental Health Outcomes in Adolescents With or Without Inflammatory Bowel Disease

Journal of Adolescent Health ◽

10.1016/j.jadohealth.2008.09.013 ◽

2009 ◽

Vol 44 (5) ◽

pp. 485-492 ◽

Cited By ~ 44

Author(s):

Sian Cotton ◽

Ian Kudel ◽

Yvonne Humenay Roberts ◽

Harini Pallerla ◽

Joel Tsevat ◽

...

Keyword(s):

Mental Health ◽

Inflammatory Bowel Disease ◽

Health Outcomes ◽

Bowel Disease ◽

Well Being ◽

Mental Health Outcomes ◽

Spiritual Well Being ◽

Inflammatory Bowel

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Coping Methods of Patients with Inflammatory Bowel Disease and Prediction of Perceived Health, Functional Status, and Well-Being

Gastroenterology Nursing ◽

10.1097/00001610-199805000-00003 ◽

1998 ◽

Vol 21 (3) ◽

pp. 112-118 ◽

Cited By ~ 26

Author(s):

DIANNE M. SMOLEN ◽

ROBERT TOPP

Keyword(s):

Inflammatory Bowel Disease ◽

Functional Status ◽

Bowel Disease ◽

Perceived Health ◽

Well Being ◽

Coping Methods ◽

Inflammatory Bowel

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Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort?

PLoS ONE ◽

10.1371/journal.pone.0150620 ◽

2016 ◽

Vol 11 (3) ◽

pp. e0150620 ◽

Cited By ~ 17

Author(s):

Valérie Pittet ◽

Carla Vaucher ◽

Michel H. Maillard ◽

Marc Girardin ◽

Philippe de Saussure ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Information Needs ◽

Clinical Cohort ◽

Inflammatory Bowel

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

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab074.821 ◽

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

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjz203.1002 ◽

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.

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COVID-19 Pandemic’s Effects on Disease and Psychological Outcomes of People With Inflammatory Bowel Disease in Portugal: A Preliminary Research

Inflammatory Bowel Diseases ◽

10.1093/ibd/izaa261 ◽

2020 ◽

Cited By ~ 1

Author(s):

Inês A Trindade ◽

Nuno B Ferreira

Keyword(s):

Ulcerative Colitis ◽

Inflammatory Bowel Disease ◽

Crohn’S Disease ◽

Depressive Symptoms ◽

Crohn's Disease ◽

Bowel Disease ◽

Well Being ◽

Psychological Outcomes ◽

Symptom Perception ◽

Inflammatory Bowel

Abstract Aims No empirical research on the psychological impact of the coronavirus disease 2019 (COVID-19) pandemic on people living with IBD, a population known to typically present high levels of anxiety and depression and to be potentially vulnerable to COVID-19, has yet been conducted. This study aimed to explore the links between contextual variables related to the COVID-19 pandemic and disease and psychological outcomes. Methods The sample included 124 Portuguese patients with Crohn’s disease or ulcerative colitis (85.48% women) who completed self-reported measures in an online survey during April 2020. Results Fear of contracting COVID-19 and medication adherence were both high and unrelated. About half of the sample presented moderate (37.10%) to severe (14.50%) anxiety. Normal and mild anxiety levels were at 29.80% and 18.50%, respectively. Regarding depressive symptoms, 51.60% of the sample presented normal levels, 27.40% mild severity, 16.10% moderate, and 4.8% severe. No differences were found between Crohn’s disease and ulcerative colitis patients. Regression analyses showed that anxiety explained IBD symptom perception (β = 0.29; P = 0.022); fear of contracting COVID-19 (β = 0.35; P < 0.001) and IBD symptom perception (β = −0.22; P = 0.009) explained depressive symptoms; and fear of contracting COVID-19 (β = 0.41; P < 0.001), IBD symptom perception (β = 0.26, P < 0.001), and being in isolation (β = −0.16, P = 0.041) explained anxiety. Type of medication was not linked to these outcomes. Conclusions The COVID-19 pandemic does not seem to be affecting adherence to medication but seems to present relevant effects on psychological well-being. Inflammatory bowel disease health care professionals should be attentive of patients’ psychological response to this pandemic and of its possible consequences on disease expression. This study additionally provided a psychometrically sound measure of fear of contracting COVID-19.

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