N06 Help-seeking behaviours for fatigue in inflammatory bowel disease

Abstract Background Fatigue is a common and burdensome symptom of inflammatory bowel disease (IBD). Although many symptoms of IBD can be debilitating, fatigue is reported by people with IBD as the most difficult symptom to live with. It is experienced by up to 86% of people in active disease and 41–48% of people with IBD in remission, and impacts greatly on all aspects of people’s lives. Fatigue is a complex and invisible symptom and therefore can often be overlooked by those caring for people with IBD. Since it is invisible, it can only be made known to healthcare professionals if patients seek help for it. The experience of people who seek help for IBD fatigue is unknown, as are the reasons some choose to seek help and others do not. This study aims to explore the determinants of help-seeking behaviour for fatigue in IBD and examine why some people with IBD fatigue are more likely to seek help than others. Methods An exploratory qualitative method was employed, underpinned by the Theory of Planned Behaviour. A voluntary sample of 12 people with a diagnosis of IBD was recruited from the Irish Society of Crohn’s and Colitis. The sample included people who had and who had not sought help for IBD fatigue in the past. Semi-structured interviews were conducted using an interview guide. Themes were uncovered using content analysis. Results Themes uncovered included symptom perception, impact of IBD fatigue and knowledge of and access to sources of help. Most commonly, people did not seek help if they could continue life with relative normalcy in spite of IBD fatigue. Access and availability of help was perceived as good. Barriers, such as time and cost, were identified as making help-seeking more difficult at times, however these did not prevent seeking help. Poor knowledge of the sources of help, IBD fatigue being regarded as an inferior symptom to other symptoms and the perceived lack of interventions to manage the complex symptom emerged as important factors influencing help-seeking behaviour. Conclusion The Theory of Planned Behaviour was found to be a useful framework to predict help-seeking behaviour for IBD fatigue. Symptom perception, impact of IBD fatigue and knowledge of and access to sources of help are the most influential aspects of help-seeking behaviour. IBD fatigue appears to lack the legitimacy of other IBD symptoms. Therefore, there is a need for healthcare professionals to fully acknowledge and routinely assess fatigue as part of the clinical management of IBD. Further research aimed at specifically managing fatigue as a major IBD burden is warranted, in particular multidimensional, holistic interventions to help people cope with the impact of IBD fatigue.

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‘It's just part of the disease’: a qualitative study exploring help-seeking behaviours for fatigue in inflammatory bowel disease

Gastrointestinal Nursing ◽

10.12968/gasn.2021.19.5.40 ◽

2021 ◽

Vol 19 (5) ◽

pp. 40-48

Author(s):

Doireann Ní Dhálaigh ◽

Anna Marie Greaney ◽

Dawn Farrell

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Help Seeking ◽

Structured Interview ◽

Symptom Perception ◽

Management Options ◽

The Past ◽

Help Seeking Behaviour ◽

Specific Source ◽

Inflammatory Bowel

Background: Fatigue is the most burdensome aspect of inflammatory bowel disease (IBD). Despite this, people tend not to discuss fatigue or seek help. Aims: To uncover the reasons people do or do not seek help for fatigue in IBD. Methods: A qualitative approach was employed, underpinned by the Theory of Planned Behaviour. Semi-structured interview questions were posed to a voluntary sample of 12 participants with self-reported diagnosis of IBD fatigue, recruited from the Irish Society of Colitis and Crohn's. The sample included individuals who had and had not sought help in the past. Findings: The availability of management options, symptom perception, symptom impact, knowledge of sources of help and inferiority of fatigue as a symptom can influence help-seeking behaviour. Fatigue is viewed as inferior to other symptoms of IBD, which influences help-seeking behaviour and help-seeking experiences. Conclusions: Health professionals can increase help-seeking by informing patients about the symptom and identifying a specific source of help for fatigue.

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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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Insight from patients and healthcare professionals on the implementation of virtual clinics in patients with inflammatory bowel disease

Frontline Gastroenterology ◽

10.1136/flgastro-2020-101714 ◽

2021 ◽

pp. flgastro-2020-101714

Author(s):

Aditi Kumar ◽

Mohammed Nabil Quraishi ◽

Shanika de Silva ◽

Nigel John Trudgill ◽

Helen Steed ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Healthcare Professionals ◽

Telephone Consultation ◽

Face To Face ◽

Short Answer ◽

Inflammatory Bowel ◽

The Uk ◽

Short Answer Questions ◽

The Impact

IntroductionDuring COVID-19, the management of outpatient inflammatory bowel disease (IBD) changed from face-to-face (F2F) to telephone and video consultations across the UK. We surveyed patients with IBD and IBD healthcare professionals (HCPs) to evaluate the impact of this abrupt transition on patient and HCP satisfaction outcomes, including the barriers and enablers of this service.MethodsPatient satisfaction surveys were sent to patients who had a telephone consultation from May to July 2020. A second survey was sent to IBD HCPs across the UK. Questions from both surveys consisted of a mixture of multiple-choice options, ranking answers as well as short-answer questions.Results210 patients and 114 HCPs completed the survey. During COVID-19, there was a significantly greater use of telephone, video or a mixture of consultation. F2F consultations were consistently preferred by patients, with 50% of patients indicating they did not want the option of for video consultations. Patients were more likely to prefer a telephone consultation if they were stable and needed routine review. Significantly fewer HCPs (5.3%) intend to use F2F consultations alone, preferring the use of telephone (20.2%) or combinations of telephone/F2F (22.8%), telephone/video (4.4%) or combination of all three consultation types (34.2%). 63% indicated they intend to incorporate video consultations in the future.ConclusionTelephone and video consultations need to be balanced proportionately with F2F clinics to achieve both patient and HCP satisfaction. Further research needs to be done to explore the use of video medicine in patients with IBD.

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The impact of inflammatory bowel disease on hard teeth tissues – preliminary results from POLIBD study

10.26226/morressier.59a6b34bd462b80290b5599d ◽

2017 ◽

Author(s):

Rafa Filip

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Preliminary Results ◽

Inflammatory Bowel ◽

The Impact

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Exploitation of Marine-Derived Robust Biological Molecules to Manage Inflammatory Bowel Disease

Marine Drugs ◽

10.3390/md19040196 ◽

2021 ◽

Vol 19 (4) ◽

pp. 196

Author(s):

Muhammad Bilal ◽

Leonardo Vieira Nunes ◽

Marco Thúlio Saviatto Duarte ◽

Luiz Fernando Romanholo Ferreira ◽

Renato Nery Soriano ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Bioactive Compounds ◽

Bowel Disease ◽

Clinical Translation ◽

Biologically Active ◽

Naturally Occurring ◽

Inflammatory Bowel ◽

Functional Features ◽

Biological Entities ◽

The Impact

Naturally occurring biological entities with extractable and tunable structural and functional characteristics, along with therapeutic attributes, are of supreme interest for strengthening the twenty-first-century biomedical settings. Irrespective of ongoing technological and clinical advancement, traditional medicinal practices to address and manage inflammatory bowel disease (IBD) are inefficient and the effect of the administered therapeutic cues is limited. The reasonable immune response or invasion should also be circumvented for successful clinical translation of engineered cues as highly efficient and robust bioactive entities. In this context, research is underway worldwide, and researchers have redirected or regained their interests in valorizing the naturally occurring biological entities/resources, for example, algal biome so-called “treasure of untouched or underexploited sources”. Algal biome from the marine environment is an immense source of excellence that has also been demonstrated as a source of bioactive compounds with unique chemical, structural, and functional features. Moreover, the molecular modeling and synthesis of new drugs based on marine-derived therapeutic and biological cues can show greater efficacy and specificity for the therapeutics. Herein, an effort has been made to cover the existing literature gap on the exploitation of naturally occurring biological entities/resources to address and efficiently manage IBD. Following a brief background study, a focus was given to design characteristics, performance evaluation of engineered cues, and point-of-care IBD therapeutics of diverse bioactive compounds from the algal biome. Noteworthy potentialities of marine-derived biologically active compounds have also been spotlighted to underlying the impact role of bio-active elements with the related pathways. The current review is also focused on the applied standpoint and clinical translation of marine-derived bioactive compounds. Furthermore, a detailed overview of clinical applications and future perspectives are also given in this review.

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Impact of COVID-19 on the diagnosis, assessment and management of children with inflammatory bowel disease in the UK: implications for practice

BMJ Paediatrics Open ◽

10.1136/bmjpo-2020-000786 ◽

2020 ◽

Vol 4 (1) ◽

pp. e000786

Author(s):

Abbie Maclean ◽

James J Ashton ◽

Vikki Garrick ◽

R Mark Beattie ◽

Richard Hansen

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Delayed Diagnosis ◽

High Standard ◽

Current Evidence ◽

Faecal Calprotectin ◽

Paediatric Patients ◽

Inflammatory Bowel ◽

Working Practices ◽

The Impact

The assessment and management of patients with known, or suspected, paediatric inflammatory bowel disease (PIBD) has been hugely impacted by the COVID-19 pandemic. Although current evidence of the impact of COVID-19 infection in children with PIBD has provided a degree of reassurance, there continues to be the potential for significant secondary harm caused by the changes to normal working practices and reorganisation of services.Disruption to the normal running of diagnostic and assessment procedures, such as endoscopy, has resulted in the potential for secondary harm to patients including delayed diagnosis and delay in treatment. Difficult management decisions have been made in order to minimise COVID-19 risk for this patient group while avoiding harm. Initiating and continuing immunosuppressive and biological therapies in the absence of normal surveillance and diagnostic procedures have posed many challenges.Despite this, changes to working practices, including virtual clinic appointments, home faecal calprotectin testing kits and continued intensive support from clinical nurse specialists and other members of the multidisciplinary team, have resulted in patients still receiving a high standard of care, with those who require face-to-face intervention being highlighted.These changes have the potential to revolutionise the way in which patients receive routine care in the future, with the inclusion of telemedicine increasingly attractive for stable patients. There is also the need to use lessons learnt from this pandemic to plan for a possible second wave, or future pandemics as well as implementing some permanent changes to normal working practices.In this review, we describe the diagnosis, management and direct impact of COVID-19 in paediatric patients with IBD. We summarise the guidance and describe the implemented changes, evolving evidence and the implications of this virus on paediatric patients with IBD and working practices.

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