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

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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Specialist inflammatory bowel disease nursing in the UK: current situation and future proofing

Frontline Gastroenterology ◽

10.1136/flgastro-2019-101354 ◽

2020 ◽

pp. flgastro-2019-101354 ◽

Cited By ~ 1

Author(s):

Lisa Younge ◽

Isobel Mason ◽

Rukshana Kapasi

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Formal Education ◽

Clinical Nurse Specialists ◽

Nursing Services ◽

Business Cases ◽

Inflammatory Bowel ◽

Specialist Nurses ◽

The Uk ◽

The Impact

ObjectiveTo determine the impact to date of the ongoing Crohn’s & Colitis UK inflammatory bowel disease (IBD) clinical nurse specialists (CNS) campaign.MethodsA survey-based design was used. 2 questionnaires were sent to the UK IBD nursing community and promoted via nursing and clinical networks. Respondents were asked to provide data at both an individual and trust level about their nursing services.Results394 IBD CNS posts were identified across the UK, with a 32% increase in posts since the start of the campaign. 27% felt the campaign had been influential in securing new posts. Greater numbers of posts were reported in England when compared with the devolved nations. Most services remain below the UK standards recommendation of 2.5 IBD CNS per 250 000 patient population. Cross site working was reported in 59% of services. 45% of respondents were non-medical prescribers, with 13% educated to MSc level. High levels of stress were reported by IBD CNS associated with managing advice line services.ConclusionsCrohn’s & Colitis UK’s ‘More IBD Nurses–Better Care’ campaign has contributed to the numbers of CNS posts in IBD continuing to rise, but they remain lower than the recommended standard of 2.5 IBD CNS per 250 000. Educational and career pathways are not clearly defined, and aspects of the role such as advice line provision contribute to stress within the workforce. The ongoing aims of the charity campaign hope to address these issues by improving access to formal education pathways with peer support for IBD specialist nurses, and advice line training, in addition to supporting trusts and services throughout the UK to reduce the workforce deficit with effective business cases.

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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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COVID-19-related health anxieties and impact of specific interventions in patients with inflammatory bowel disease in the UK

Frontline Gastroenterology ◽

10.1136/flgastro-2020-101633 ◽

2020 ◽

pp. flgastro-2020-101633

Author(s):

Nasir Mir ◽

Jonathan Cheesbrough ◽

Thomas Troth ◽

Nasir Hussain ◽

Laurence Joseph Hopkins ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Information Seeking ◽

Information Dissemination ◽

Risk Groups ◽

Health Related ◽

Inflammatory Bowel ◽

The Uk ◽

Clinical Interactions ◽

The Impact

ObjectiveHealth-related concerns brought on by the COVID-19 pandemic and the impact of specific local and national interventions have not been explored in patients with inflammatory bowel disease (IBD) in the UK. We evaluated perspectives of patients with IBD on the pandemic and effectiveness of information dissemination in addressing concerns.MethodsWe prospectively conducted a survey among patients with IBD during the COVID-19 pandemic to assess concerns, information-seeking behaviours, risk perception, compliance and effect of specific interventions.ResultsA total of 228 patients were interviewed of whom 89% reported being concerned about the impact of COVID-19 on their health. Access to at least one IBD-specific clinical interaction during the pandemic (COVID-19 information letter from IBD team, interaction with IBD team or general practitioner, Crohn and Colitis UK website visit) was significantly associated with alleviating concerns (OR 2.66; 95% CI 1.35 to 5.24; p=0.005). Seeking health information solely through unofficial channels (search engines or social media) was less likely to ease concerns (OR 0.15; 95% CI 0.03 to 0.61; p=0.008). A quarter of patients disagreed with their assigned risk groups, with majority perceiving higher-risk profiles. This discordance was greatest in patients within the moderate-risk group and constituted immunosuppression use. Nearly 40% of patients had ongoing concerns with regard to their medications of whom a third felt their concerns were not addressed.ConclusionIBD-specific clinical interactions are associated with alleviation of COVID-19 health concerns. These findings have wider implications and emphasise importance of innovative solutions that facilitate effective communication with patients without overburdening current services.

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Organisational changes and challenges for inflammatory bowel disease services in the UK during the COVID-19 pandemic

Frontline Gastroenterology ◽

10.1136/flgastro-2020-101520 ◽

2020 ◽

Vol 11 (5) ◽

pp. 343-350 ◽

Cited By ~ 3

Author(s):

Nicholas A Kennedy ◽

Richard Hansen ◽

Lisa Younge ◽

Joel Mawdsley ◽

R Mark Beattie ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Elective Surgery ◽

Quality Care ◽

Faecal Calprotectin ◽

Telephone Consultation ◽

Ensure Patient Safety ◽

Inflammatory Bowel ◽

The Uk ◽

The Impact

ObjectiveTo determine the challenges in diagnosis, monitoring, support provision in the management of inflammatory bowel disease (IBD) patients and explore the adaptations of IBD services.MethodsInternet-based survey by invitation of IBD services across the UK from 8 to 14 April 2020.ResultsRespondents from 125 IBD services completed the survey. The number of whole-time equivalent gastroenterologists and IBD nurses providing elective outpatient care decreased significantly between baseline (median 4, IQR 4–7.5 and median 3, IQR 2–4) to the point of survey (median 2, IQR 1–4.8 and median 2, IQR 1–3) in the 6-week period following the onset of the COVID-19 pandemic (p<0.001 for both comparisons). Almost all (94%; 112/119) services reported an increase in IBD helpline activity. Face-to-face clinics were substituted for telephone consultation by 86% and video consultation by 11% of services. A variation in the provision of laboratory faecal calprotectin testing was noted with 27% of services reporting no access to faecal calprotectin, and a further 32% reduced access. There was also significant curtailment of IBD-specific endoscopy and elective surgery.ConclusionsIBD services in the UK have implemented several adaptive strategies in order to continue to provide safe and high-quality care for patients. National Health Service organisations will need to consider the impact of these changes in current service delivery models and staffing levels when planning exit strategies for post-pandemic IBD care. Careful planning to manage the increased workload and to maintain IBD services is essential to ensure patient safety.

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

Gastroenterology ◽

10.1016/s0016-5085(21)01266-x ◽

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

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P641 Impact of lockdown period due to COVID-19 pandemic in patients with Inflammatory Bowel Disease

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab076.761 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S574-S575

Author(s):

S García Mateo ◽

E Refaie ◽

S J Martínez-Domínguez ◽

C J Gargallo-Puyuelo ◽

L Lario Quilez ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Emotional Disorders ◽

Bowel Disease ◽

University Hospital ◽

Emotional Impact ◽

Indeterminate Colitis ◽

Physician Patient Relationship ◽

Therapeutic Adherence ◽

Inflammatory Bowel ◽

The Impact

Abstract Background The lockdown period due to the coronavirus disease 2019 (COVID-19) in Spain was established from 16th March to 21th June 2020. Therefore, the authorities controlled personal movements and private and public non-essential activities were cancelled. It has probably had an important emotional impact on chronic patients and hence in those who are suffering from Inflammatory Bowel Disease (IBD) due to their high risk of emotional disorders. The aim of this study is to know how COVID 19 influenced to the patients suffering from IBD during the quarantine period, focusing heavily on the psychological distress through the Perceived Stress Scale-10 (PSS-10), and also the impact of the pandemic on therapeutic adherence using Visual Analogue Scale (VAS). Methods This is an unicentric and analytical observational study carried out in IBD unit of a large public teaching Hospital (University Hospital “Lozano Blesa”) during August 2020. Patients were contacted and interviewed by phone by two trained researchers not involved in the patient′s medical care. Inclusion criteria were age ≥ 18 years old and confirmed diagnosis of Crohn′s Disease (CD), Ulcerative Colitis (UC) or Indeterminate Colitis. A descriptive analysis was carried out and, subsequently, the factors associated with the loss of therapeutic adherence and higher-moderate levels of stress were analyzed through Logistic regression multivariate analyses. Results Of the 426 patients included, 217 (50.9%) were women, 249 (58.4%) had UC and 177 (41.6%) had EC. During the Spanish lockdown period, most of patients did not have symptoms related to their IBD (302; 72.1%). Among those who had symptoms, the most frequent was diarrhea and abdominal pain (11.5%). Most of subjects were not diagnosed of SARS-CoV2 infection (93%), whereas 2.1% suffered confirmed infection and 4.9% had compatible symptoms without test confirmation. Regarding economic situation of patients, most of them did not have economic difficulties (87.6%). Moreover, 74.4% of participants referred a very good physician-patient relationship and 21.8% a good relationship. People who participated in the study had a median PSS-10 score of 12 (10–16). A higher level of stress was reported between those who were not married, women, and those who experimented an increase of IBD related symptoms. Adherence to treatment was not associated with stress level based on PSS-10 questionnaire. Conclusion Although the lockdown period due to COVID-19 pandemic has probably had an important emotional impact on Spanish population, IBD patients had in general lower PSS-10 scores. It could be due to a good patient-physician relationship, which contributed to maintaining a good adherence to medications in those patients.

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

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjz203.1010 ◽

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.

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

Health and Quality of Life Outcomes ◽

10.1186/s12955-021-01698-9 ◽

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.

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

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab076.233 ◽

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.

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Stigma and Disclosure in Patients With Inflammatory Bowel Disease

Inflammatory Bowel Diseases ◽

10.1093/ibd/izz260 ◽

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.

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