Grieving multiple losses: Experiences of intimacy and sexuality of people living with inflammatory bowel disease. A phenomenological study.

AIM: To explore patient experiences of intimacy and sexuality in those living with inflammatory bowel disease. DESIGN: An interpretative phenomenological study guided by van Manen's framework. Thematic analysis was conducted through interpretation and reflection on four existential domains: body, relationships, time and space. METHODS: Data were collected during 2019-2021 from 43 participants via face-to-face or telephone interviews, as well as anonymous collection of narratives submitted via Google Forms. RESULTS: Four themes were identified: Sexuality as lived incompleteness was the overarching theme representing the essence of the experiences of intimacy and sexuality. This theme covered the four main themes: Otherness of the body, Interrupted connectedness, Missing out on life fullness and Fragmented openness and each corresponded to an existential domain. Intimacy and sexuality are negatively affected by inflammatory bowel disease, with impact on quality of life. Patients experienced grieving multiple losses, from body image and control, to choice of partners and future opportunities. The four domains were difficult to separate and a close inter-relationship between each domain was acknowledged. CONCLUSIONS: A model was developed to draw new theoretical insights to understanding the relationship between sexual well-being and psycho-emotional distress similar to grief. IMPACT: First qualitative study to explore intimacy and sexuality experiences of those living with inflammatory bowel disease. Illness impact on sexuality has negative psycho-emotional implications as a result of losing the old self and capacity to have the desired relationships/sex life. A theoretical model was developed in an attempt to illustrate the close relationship of intimacy, sexuality and psycho-emotional well-being. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in the study design.

Nurse and pharmacist systemic anti-cancer therapy review clinics and their impact on patient experience and care: A systematic review.

AIM: To review the evidence of how nurse and pharmacist roles have been incorporated into the management of patients undergoing systemic anti-cancer therapy (SACT) services and their impact on patient experience and care provision. DESIGN: Systematic Review. DATA SOURCES: Seven databases were searched on 10 April 2022. REVIEW METHODS: Research studies that met defined inclusion criteria were included. Quantitative findings were converted into textual descriptions and combined with qualitative results for thematic analysis. Data were categorized and aggregated into themes. Heterogeneity of studies meant meta-analysis was not possible. RESULTS: Fifteen papers were included. Three main themes were identified: advanced clinical practice (ACP) SACT service development; ACP skills and qualifications; and the impact of ACP SACT services on patient care and outcomes. There is a variation in tasks undertaken by nurses and pharmacists and role integration is restricted by limited physician engagement. Role titles used and skills and qualifications acquired differ and professional autonomy is variable. Qualitative studies were limited. CONCLUSION: Evidence of how nursing and pharmacist ACP roles are implemented, what skills are essential and how roles are impacting patient experience and outcomes is limited. More research is required to explore patient and physician experience of, and satisfaction with multi-professional care, alongside further evaluation of clinical delivery models.

A systematic review of the impact of inflammatory bowel disease (IBD) on family members.

BACKGROUND AND AIMS: Inflammatory Bowel Disease (IBD) affects patients and their family members, but most reviews have focused only on patients themselves. This review synthesises evidence on the impact of IBD on family members. METHODS: A systematic review was undertaken, searching six bibliographic databases, focusing on the impact of IBD on family members, coping strategies, and interventions. A narrative synthesis was conducted. This review was reported following the Preferred Reporting Items for Systematic Reviews (PRISMA). RESULTS: 3258 records were identified; 33 papers (2748 participants) were included. Three themes were identified: impact of IBD on family members; coping strategies for family members to overcome the impact of IBD; and the support needed by family members. IBD affects family members' well-being in many ways, including their emotional well-being, relationship with the patient, social life, work and finances, and leisure time and travel. Family members use adaptive coping patterns such as acceptance, developing resilience, and emotional support from others. Maladaptive coping patterns such as denial of diagnosis, self-distraction, and self-blame were also evident. Family members reported that they needed better information about IBD, support groups, and better access to a counsellor or psychologist. No studies assessed interventions to relieve family members' burden. CONCLUSIONS: Family members of IBD patients require psychosocial support to facilitate better family function, cohesion, and enhanced coping strategies. Healthcare services should adopt a multidisciplinary care model with a bio-psycho-social approach including an IBD nurse, family therapist, and psychologist, to improve quality of life for patients and their families.

Exploring adult critical illness survivors' experiences of fatigue: A qualitative study.

AIMS: To explore adult experiences of fatigue after discharge from an intensive care unit and identify potential management strategies. DESIGN: An exploratory qualitative study. METHODS: One to one audio-recorded semi-structured interviews with 17 adult survivors of critical illness in the United Kingdom, lasting up to 1 h, between September 2019 and January 2020. Anonymised and verbatim-transcribed interview data underwent a standard process of inductive thematic analysis as described by Braun and Clarke. FINDINGS: Three themes were identified: fatigue is different for everyone; complex interrelating interactions; and personalised fatigue strategies. Fatigue was described as a distressing symptom, unique to the individual that causes an array of complex, often long-term interrelating impacts on the survivor and their wider family, made worse by a lack of understanding, empathy and support resources. Support from others, alongside interventions such as exercise, good nutrition, information and alternative therapies are used by survivors with variable degrees of success. CONCLUSIONS: This qualitative study reports peoples' experiences of fatigue after critical illness. Findings highlight the significant impact it has on people's lives and those of their family and friends.

Interventions for fatigue in inflammatory bowel disease.

BACKGROUND: Inflammatory bowel disease (IBD) is an umbrella term used to describe a group of chronic, progressive inflammatory disorders of the digestive tract. Crohn's disease and ulcerative colitis are the two main types. Fatigue is a common, debilitating and burdensome symptom experienced by individuals with IBD. The subjective, complex nature of fatigue can often hamper its management. The efficacy and safety of pharmacological or non-pharmacological treatments for fatigue in IBD is not yet established through systematic review of studies. OBJECTIVES: To assess the efficacy and safety of pharmacological and non-pharmacological interventions for managing fatigue in IBD compared to no treatment, placebo or active comparator. SEARCH METHODS: A systematic search of the databases Embase, MEDLINE, Cochrane Library, CINAHL, PsycINFO was undertaken from inception to July 2018. A top-up search was run in October 2019. We also searched the Cochrane IBD Group Specialized Register, the Cochrane Central Register of Controlled Trials, ongoing trials and research registers, conference abstracts and reference lists for potentially eligible studies. SELECTION CRITERIA: Randomised controlled trials of pharmacological and non-pharmacological interventions in children or adults with IBD, where fatigue was assessed as a primary or secondary outcome using a generic or disease-specific fatigue measure, a subscale of a larger quality of life scale or as a single-item measure, were included. DATA COLLECTION AND ANALYSIS: Two authors independently screened search results and four authors extracted and assessed bias independently using the Cochrane 'Risk of bias' tool. The primary outcome was fatigue and the secondary outcomes included quality of life, adverse events (AEs), serious AEs and withdrawal due to AEs. Standard methodological procedures were used. MAIN RESULTS: We included 14 studies (3741 participants): nine trials of pharmacological interventions and five trials of non-pharmacological interventions. Thirty ongoing studies were identified, and five studies are awaiting classification. Data on fatigue were available from nine trials (1344 participants). In only four trials was managing fatigue the primary intention of the intervention (electroacupuncture, physical activity advice, cognitive behavioural therapy and solution-focused therapy). Electroacupuncture Fatigue was measured with Functional Assessment of Chronic Illness Therapy - Fatigue (FACIT-F) (scores range from 0 to 52). The FACIT-F score at week eight was 8.00 points higher (better) in participants receiving electroacupuncture compared with no treatment (mean difference (MD) 8.00, 95% CI 6.45 to 9.55; 1 RCT; 27 participants; low-certainty evidence). Results at week 16 could not be calculated. FACIT-F scores were also higher with electroacupuncture compared to sham electroacupuncture at week eight (MD 5.10, 95% CI 3.49 to 6.71; 1 RCT; 30 participants; low-certainty evidence) but not at week 16 (MD 2.60, 95% CI 0.74 to 4.46; 1 RCT; 30 participants; low-certainty evidence). No adverse events were reported, except for one adverse event in the sham electroacupuncture group. Cognitive behavioural therapy (CBT) and solution-focused therapy Compared with a fatigue information leaflet, the effects of CBT on fatigue are very uncertain (Inflammatory Bowel Disease-Fatigue (IBD-F) section I: MD -2.16, 95% CI -6.13 to 1.81; IBD-F section II: MD -21.62, 95% CI -45.02 to 1.78; 1 RCT, 18 participants, very low-certainty evidence). The efficacy of solution-focused therapy on fatigue is also very uncertain, because standard summary data were not reported (1 RCT, 98 participants). Physical activity advice One 2 x 2 factorial trial (45 participants) found physical activity advice may reduce fatigue but the evidence is very uncertain. At week 12, compared to a control group receiving no physical activity advice plus omega 3 capsules, FACIT-F scores were higher (better) in the physical activity advice plus omega 3 group (FACIT-F MD 6.40, 95% CI -1.80 to 14.60, very low-certainty evidence) and the physical activity advice plus placebo group (FACIT-F MD 9.00, 95% CI 1.64 to 16.36, very low-certainty evidence). Adverse events were predominantly gastrointestinal and similar across physical activity groups, although more adverse events were reported in the no physical activity advice plus omega 3 group. Pharmacological interventions Compared with placebo, adalimumab 40 mg, administered every other week ('eow') (only for those known to respond to adalimumab induction therapy), may reduce fatigue in patients with moderately-to-severely active Crohn's disease, but the evidence is very uncertain (FACIT-F MD 4.30, 95% CI 1.75 to 6.85; very low-certainty evidence). The adalimumab 40 mg eow group was less likely to experience serious adverse events (OR 0.56, 95% CI 0.33 to 0.96; 521 participants; moderate-certainty evidence) and withdrawal due to adverse events (OR 0.48, 95%CI 0.26 to 0.87; 521 participants; moderate-certainty evidence). Ferric maltol may result in a slight increase in fatigue, with better SF-36 vitality scores reported in the placebo group compared to the treatment group following 12 weeks of treatment (MD -9.31, 95% CI -17.15 to -1.47; 118 participants; low-certainty evidence). There may be little or no difference in adverse events (OR 0.55, 95% CI 0.26 to 1.18; 120 participants; low-certainty evidence) AUTHORS' CONCLUSIONS: The effects of interventions for the management of fatigue in IBD are uncertain. No firm conclusions regarding the efficacy and safety of interventions can be drawn. Further high-quality studies, with a larger number of participants, are required to assess the potential benefits and harms of therapies. Future studies should assess interventions specifically designed for fatigue management, targeted at selected IBD populations, and measure fatigue as the primary outcome.

Identifying disease-specific distress in patients with inflammatory bowel disease.

OBJECTIVES: Inflammatory bowel disease (IBD) imposes a significant burden on patients. The authors have noticed an underlying presence of distress, seemingly distinct from anxiety and depression, in qualitative data collected for previous studies. Disease-related distress has been explored in diabetes, but has not been addressed in IBD. The authors aimed to determine the presence of IBD distress to inform development of a scale for assessing the phenomenon. METHODS: This three-phase study used (1) a conceptual framework based on diabetes distress to conduct secondary analysis of qualitative data from four previous IBD studies (n=49 transcripts). Patient advisors confirmed the themes identified as causing distress, which guided (2) a focus group with people with IBD (n=8) and (3) items generated from phase 1 and 2 were subsequently used for a modified Delphi survey of IBD health professionals. RESULTS: Five IBD-distress themes were identified: emotional distress; healthcare-related distress; interpersonal/social distress; treatment-related distress; and symptom-related distress. DISCUSSION: Disease-specific distress in IBD was identified and is distinct from stress, anxiety and depression. Some causes of IBD distress overlap with diabetes distress, but existing diabetes-distress scales do not explain all the distress experienced by people with IBD and development of a new IBD-distress scale is warranted.

Our Life Is a Rollercoaster! A Qualitative Phenomenological Study Exploring the Impact of IBD on Family Members.

BACKGROUND: Inflammatory bowel disease (IBD) significantly impacts patients and their families. To provide support, understanding the effects on the wider family is crucial. However, limited research exists on the impact of IBD on family members of adults diagnosed with IBD. This study addresses this knowledge gap. METHODS: Underpinned by interpretive phenomenology, this study used in-depth, semi-structured online interviews to explore relatives' experiences. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using reflexive thematic analysis. RESULTS: Forty-three purposively selected interviewees comprising 17 people with IBD and 26 family members (parents, children, siblings, and partners) revealed 3 main themes: (1) "life is a rollercoaster," (2) "there have been a lot of bridges to cross along the way," and (3) "my life would be better if…" Participants highlighted that IBD has both positive and negative impacts on family members in terms of emotional well-being, relationship, roles and responsibilities, day-to-day burden, and sibling suffering. Some employed adaptive coping strategies such as creating social networks and open communication, while others relied on maladaptive coping strategies, such as avoidance and alcohol abuse. Family members expressed the need for proactive communication, information, and support from healthcare professionals. CONCLUSIONS: IBD affects the emotional and psychosocial well-being of family members, eliciting both adaptive and maladaptive coping strategies. Healthcare professionals need to adopt a holistic approach to managing IBD that considers the psychosocial and emotional challenges faced by individuals and their families.

Inflammatory bowel disease has a profound impact on the psychosocial and emotional well-being of family members, diminishing their quality of life. Family members seek guidance on coping strategies and interventions to bolster their psychological, social, and emotional well-being.

Fatigue after CriTical illness (FACT): Co-production of a self-management intervention to support people with fatigue after critical illness.

PURPOSE: Fatigue is a common and debilitating problem in patients recovering from critical illness. To address a lack of evidence-based interventions for people with fatigue after critical illness, we co-produced a self-management intervention based on self-regulation theory. This article reports the development and initial user testing of the co-produced intervention. METHODS: We conducted three workshops with people experiencing fatigue after critical illness, family members, and healthcare professionals to develop a first draft of the FACT intervention, designed in web and electronic document formats. User testing and interviews were conducted with four people with fatigue after critical illness. Modifications were made based on the findings. RESULTS: Participants found FACT acceptable and easy to use, and the content provided useful strategies to manage fatigue. The final draft intervention includes four key topics: (1) about fatigue which discusses the common characteristics of fatigue after critical illness; (2) managing your energy with the 5 Ps (priorities, pacing, planning, permission, position); (3) strategies for everyday life (covering physical activity; home life; leisure and relationships; work, study, and finances; thoughts and feelings; sleep and eating); and (4) goal setting and making plans. All material is presented as written text, videos, and supplementary infographics. FACT includes calls with a facilitator but can also be used independently. CONCLUSIONS: FACT is a theory driven intervention co-produced by patient, carer and clinical stakeholders and is based on contemporary available evidence. Its development illustrates the benefits of stakeholder involvement to ensure interventions are informed by user needs. Further testing is needed to establish the feasibility and acceptability of FACT. IMPLICATIONS FOR CLINICAL PRACTICE: The FACT intervention shows promise as a self-management tool for people with fatigue after critical illness. It has the potential to provide education and strategies to patients at the point of discharge and follow-up.

Full title: "Hopes, worries and expectations" experiences of pregnancy with inflammatory bowel disease: An interpretative phenomenological analysis study.

Background and Aims: Inflammatory Bowel Disease (IBD) affects many women of childbearing age. High levels of voluntary childlessness and high levels of pregnancy-related fears have been reported amongst these patients in several quantitative studies. We investigated the lived experiences of pregnant patients to better understand decision-making processes around family planning. Methods: Nine participants between 7 and 34 weeks pregnant (6 Crohn's Disease/3 Ulcerative Colitis), with an age range of 22-39 were recruited prospectively from three United Kingdom hospitals. Semi-structured interviews were conducted, and audio recorded. Interpretative phenomenological analysis was used to interpret the data. Results: Two main themes emerged: 1) IBD is perceived as a threat to family planning; and 2) healthcare professional advice, support, and reassurance was important. IBD was viewed as a potential threat to fertility and reproductive health. Consequently, women's lived experience of pregnancy is shaped by anxiety and pregnancy-related worries for mother and baby. Mothers actively sought out expert medical assurances to alleviate some of the perceived fears. Conclusion: Previous research has repeatedly found that women with IBD exhibit high levels of pregnancy-related worries and anxieties. Our findings find that high levels of anxiety are due to patients' perceptions that IBD is a threat to their reproductive health and their offspring. Women relied on a medicalized discourse to understand their IBD experiences during pregnancy and actively sought biomedical resources for assistance before and during pregnancy. Consultants should be aware that when dealing with pregnant patients, some women may experience anxiety and require extra support.

Baseline Data and Measurement Instruments Reported in Observational Studies in Inflammatory Bowel Disease: Results from a Systematic Review.

BACKGROUND: Heterogeneity in demographic and outcomes data with corresponding measurement instruments [MIs] creates barriers to data pooling and analysis. Several core outcome sets have been developed in inflammatory bowel disease [IBD] to homogenize outcomes data. A parallel Minimum Data Set [MDS] for baseline characteristics is lacking. We conducted a systematic review to develop the first MDS. METHODS: A systematic review was made of observational studies from three databases [2000-2021]. Titles and abstracts were screened, full-text articles were reviewed, and data were extracted by two reviewers. Baseline data were grouped into ten domains: demographics, clinical features, disease behaviour/complications, biomarkers, endoscopy, histology, radiology, healthcare utilization and patient-reported data. Frequency of baseline data and MIs within respective domains are reported. RESULTS: From 315 included studies [600 552 subjects], most originated from Europe [196; 62%] and North America [59; 19%], and were published between 2011 and 2021 [251; 80%]. The most frequent domains were demographics [311; 98.7%] and clinical [289; 91.7%]; 224 [71.1%] studies reported on the triad of sex [306; 97.1%], age [289; 91.7%], and disease phenotype [231; 73.3%]. Few included baseline data for radiology [19; 6%], healthcare utilization [19; 6%], and histology [17; 5.4%]. Ethnicity [19; 6%], race [17; 5.4%], and alcohol/drug consumption [6; 1.9%] were the least reported demographics. From 25 MIs for clinical disease activity, the Harvey-Bradshaw Index [n = 53] and Mayo score [n = 37] were most frequently used. CONCLUSIONS: Substantial variability exists in baseline population data reporting. These findings will inform a future consensus for MDS in IBD to enhance data harmonization and credibility of real-world evidence.

ECCO Guidelines on Therapeutics in Crohn's Disease: Surgical Treatment.

This article is the second in a series of two publications on the European Crohn's and Colitis Organisation [ECCO] evidence-based consensus on the management of Crohn's disease. The first article covers medical management; the present article addresses surgical management, including preoperative aspects and drug management before surgery. It also provides technical advice for a variety of common clinical situations. Both articles together represent the evidence-based recommendations of the ECCO for Crohn's disease and an update of prior ECCO guidelines.

The experience of fatigue in people with inflammatory bowel disease: an exploratory study.

AIMS: To explore fatigue, the impact it has on daily life and the strategies used to ameliorate the symptom, as described by people with inflammatory bowel disease. BACKGROUND: Fatigue is the most troublesome symptom during remission of inflammatory bowel disease. Fatigue affects people's daily functioning, impacting on quality of life. There is limited understanding of the nature of and the ways fatigue in inflammatory bowel disease is experienced and managed in everyday adult life. DESIGN: An epistemological interpretive approach to understand participants' self-reported experiences of disease-related fatigue. METHODS: A convenience sample of 46 participants was recruited from the Crohn's and Colitis UK member database. Five focus group interviews (November 2008-February 2009) were conducted, audio-recorded, transcribed, and analysed using an inductive thematic framework. FINDINGS: Five themes were identified: the experience of fatigue, causes of fatigue, managing fatigue, consequences of fatigue, and seeking support. Fatigue had a debilitating effect on the social and emotional well-being of participants and limited their employment opportunities. People used a range of strategies to cope and reported that fatigue-related issues seemed to be poorly understood by clinicians and were not addressed in medical consultations. CONCLUSION: Fatigue was an inextricable part of daily life for some people with inflammatory bowel disease. Specialist nurses and medical colleagues need to address the personal, social, and economic consequences of fatigue, whilst further nursing research would improve understanding of the impact of fatigue and help develop appropriate intervention strategies for people with inflammatory bowel disease.

Exercise in individuals with inflammatory bowel disease.

There is increasing evidence that exercise may improve symptoms in individuals with inflammatory bowel disease (IBD). This study aims to explore issues that clinicians may need to consider when giving advice on exercise to such individuals. Limited existing evidence suggests that low to moderate physical activity may improve symptoms without any adverse effects in individuals with IBD. This is largely supported by the findings of the current case series of "exercising" individuals with IBD who reported that low- to moderate-intensity exercise (most commonly walking) had a positive effect on their mood, fatigue, weight maintenance, and osteoporosis. Overexertion was reported as a potential problem. Scant advice regarding exercise had been given by their healthcare professionals according to participants. The current literature and findings of this small case series suggest that exercise is likely to be beneficial and safe for individuals with IBD. However, more research is required on which recommendations for exercise could be based.

A Decade of Waiting: Experiences of Women Living With Vulvar Crohn's Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study.

Background: Vulvar Crohn's disease is a rare cutaneous manifestation of inflammatory bowel disease and to date, studies have reported on under 300 cases worldwide. The condition has an increased risk of malignancy, and diagnosis is often difficult. Treatment protocols are yet to be developed. This paper aimed to provide the first account of patients' experience of living with vulvar Crohn's. Methods: A previous qualitative study exploring experiences of sexual well-being in inflammatory bowel disease and experiences of discussing sexual well-being with healthcare professionals found 3 participants who self-reported vulvar Crohn's disease. Data from the whole cohort (n = 43) were previously reported. Telephone semi-structured interviews were used for data collection. van Manen's phenomenology of practice framework informed analysis. Results: Due to significant differences in experiences, this subgroup of 3 women with vulvar Crohn's warranted separate attention. The common theme of the group was A decade of waiting, describing the major delays experienced in being diagnosed. The symptoms reported appeared to be very severe, and sexual well-being was very negatively affected. Conclusions: Women with vulvar Crohn's trust in healthcare professionals was eroded as a result of a decade delay in diagnosis, while the quality of life and relationships suffered.

Knowledge and Attitude of Inflammatory Bowel Disease Patients Toward Colorectal Cancer Risk, Its Management, and the Role of Healthcare Providers: A Cross-Sectional Study in the UK.

Background: Inflammatory bowel disease (IBD) increases the risk for colorectal cancer (CRC). Limited literature exists on patients' knowledge of CRC risk and management. Attitude toward doctor-recommended management and the role of healthcare providers (HCPs) in CRC risk awareness remain unexplored. This study aimed to fill the gap in knowledge about CRC risk awareness and management in IBD patients in the UK. Methods: This cross-sectional internet-based study was conducted in April-July 2019. Adult (>18 years) IBD patients with a confirmed diagnosis for 2 years and adequate command of English language were invited from non-Natinal Health Services sources. A self-designed and piloted questionnaire with open- and closed-ended questions was used. Closed-ended data were analyzed using descriptive statistics and open-ended responses were analyzed using content analysis. Results: Ninety-two participants (52.5% Crohn's disease and 67.5% females) responded. Around 88% knew that IBD increased CRC risk. Only 20.7% were aware of colonoscopy as the best screening tool; 88% were unaware of screening initiation time. Almost 90% would agree to a doctor's recommendation of colonoscopy. For dysplasia with 10% risk of CRC, 46.7% would not agree with colectomy. Some 48% reported to have never had a discussion about the risk of CRC in IBD with their HCPs, while 58% were not informed of the role of screening and surveillance in managing CRC risk. Conclusions: IBD patients were poorly aware of CRC risk management and had mixed willingness to comply with a doctor's recommendation. HCP's role in cancer knowledge dissemination was suboptimal and patients desired more information.

Non-pharmacological interventions for self-management of fatigue in adults: An umbrella review of potential interventions to support patients recovering from critical illness.

PURPOSE: Fatigue is a common symptom after critical illness. However, evidence-based interventions for fatigue after critical illness are lacking. We aimed to identify interventions to support self-management of fatigue caused by physical conditions and assess their effectiveness and suitability for adaptation for those with fatigue after critical illness. MATERIALS AND METHODS: We conducted an umbrella review of systematic reviews. Databases included CINAHL, PubMed, Medline, PsycINFO, British Nursing Index (BNI), Web of Science, Cochrane Database of Systematic Reviews (CDSR), JBI Evidence Synthesis Database, and PROSPERO register. Included reviews were appraised using the JBI Checklist for Systematic Reviews and Research Syntheses. Results were summarised narratively. RESULTS: Of the 672 abstracts identified, 10 met the inclusion criteria. Reviews focused on cancer (n = 8), post-viral fatigue (n = 1), and Systemic Lupus Erythematosus (SLE) (n = 1). Primary studies often did not address core elements of self-management. Positive outcomes were reported across all reviews, and interventions involving facilitator support appeared to be most effective. CONCLUSIONS: Self-management can be effective at reducing fatigue symptoms and improving quality of life for physical conditions and has clear potential for supporting people with fatigue after critical illness, but more conclusive data on effectiveness and clearer definitions of self-management are required.

What Do We Know about Medication Adherence Interventions in Inflammatory Bowel Disease, Multiple Sclerosis and Rheumatoid Arthritis? A Scoping Review of Randomised Controlled Trials.

Purpose: Between 53% and 75% of people with inflammatory bowel disease, 30%-80% with rheumatoid arthritis, and up to 50% with multiple sclerosis do not take medications as prescribed to maintain remission. This scoping review aimed to identify effective adherence interventions for inflammatory bowel disease, but with few studies found, multiple sclerosis and rheumatoid arthritis were included to learn lessons from other conditions. Methods: Full and pilot randomised controlled trials testing medication adherence interventions for inflammatory bowel disease, multiple sclerosis, and rheumatoid arthritis conducted between 2012 and 2021 were identified in six electronic databases. Results: A total of 3024 participants were included from 24 randomised controlled trials: 10 pilot and 14 full studies. Eight investigated inflammatory bowel disease, 12 rheumatoid arthritis, and four multiple sclerosis. Nine studies (37.5%) reported significantly improved medication adherence, all involving tailored, personalised education, advice or counselling by trained health professionals, with five delivered face-to-face and 1:1. Quality of effective interventions was mixed: five rated high quality, two medium and two low quality. Interventions predominantly using technology were likely to be most effective. Secondary tools, such as diaries, calendars and advice sheets, were also efficient in increasing adherence. Only 10 interventions were based on an adherence theory, of which four significantly improved adherence. Conclusion: Tailored, face-to-face, 1:1 interactions with healthcare professionals were successful at providing personalised adherence support. Accessible, user-friendly technology-based tools supported by calendars and reminders effectively enhanced adherence. Key components of effective interventions should be evaluated and integrated further into clinical practice if viable, whilst being tailored to inflammatory conditions.

Translation, validation and psychometric properties of the Dutch version of the Inflammatory Bowel Disease-Fatigue (IBD-F) self-assessment scale.

BACKGROUND: In patients with inflammatory bowel disease (IBD), a symptom with major impact on health-related quality of life is fatigue. To assess fatigue and conduct research regarding fatigue in IBD patients, a validated disease specific assessment tool is required. The aim of this study was to translate the Inflammatory Bowel Disease Fatigue patient self-assessment scale (IBD-F) into Dutch and to validate this translated scale in a Dutch IBD population. METHODS: The study comprised three phases. In phase 1, the original IBD-F was translated into Dutch. Phase 2 comprised a pilot-test of the pre-final Dutch IBD-F to assess content validity by applying a semi-structured interview design. In phase 3, construct validity, internal consistency and test-retest reliability were assessed using a cross-sectional design. RESULTS: Phase 1 resulted in the pre-final version of the Dutch IBD-F. After five semi-structured interviews with IBD patients in phase 2, minor adjustments were made which resulted in the final version of the Dutch IBD-F. Evaluation of this final version in 133 IBD patients showed adequate psychometric properties: good convergent validity with the Multidimensional Fatigue Inventory subscales (Spearman's r 0.57-0.86) and excellent internal consistency (Cronbach's alpha 0.94 for Section I and 0.97 for Section II). Test-retest reliability in 102 patients was shown to be good (Section I ICC 0.85 (95% CI 0.79-0.90) and Section II ICC 0.88 (95% CI 0.83-0.92)). CONCLUSIONS: The thorough translation process resulted in a comprehensible, valid and reliable version of the Dutch IBD-F. Convergent validity with the MFI-20 appeared to be good. This study found excellent internal consistency and good test-retest reliability.

Development of a Core Outcome Set for Real-world Data in Inflammatory Bowel Disease: A European Crohn's and Colitis Organisation [ECCO] Position Paper.

BACKGROUND AND AIMS: The utility of real-world data is dependent on the quality and homogeneity of reporting. We aimed to develop a core outcome set for real-world studies in adult patients with inflammatory bowel disease [IBD]. METHODS: Candidate outcomes and outcome measures were identified and categorised in a systematic review. An international panel including patients, dietitians, epidemiologists, gastroenterologists, nurses, pathologists, radiologists, and surgeons participated in a modified Delphi consensus process. A consensus meeting was held to ratify the final core outcome set. RESULTS: A total of 26 panellists from 13 countries participated in the consensus process. A total of 271 items [130 outcomes, 141 outcome measures] in nine study domains were included in the first-round survey. Panellists agreed that real-world studies on disease activity should report clinical, endoscopic, and biomarker disease activity. A disease-specific clinical index [Harvey-Bradshaw Index, Partial Mayo Score, Simple Clinical Colitis Activity Index] should be used, rather than physician global assessment. In ulcerative colitis [UC], either the UC Endoscopic Index of Severity or the Mayo Endoscopic Score can be used, but there was no consensus on an endoscopic index for Crohn's disease, nor was there consensus on the use of the presence of ulcers. There was consensus on using faecal calprotectin and C-reactive protein. There was no consensus on the use of histology in real-world studies. CONCLUSIONS: A core outcome set for real-world studies in IBD has been developed based on international multidisciplinary consensus. Its adoption will facilitate synthesis in the generation of real-world evidence.

Multidisciplinary Perinatal Care in IBD.

BACKGROUND AND AIMS: Patients with inflammatory bowel disease [IBD] are often affected during their reproductive years and may have many perinatal queries that require the comprehensive perspectives of a multidisciplinary team [MDT]. The purpose of this topical review is to assess the scientific evidence and provide expert opinion related to nutritional, psychological and supportive care of women and their infants throughout the prenatal, antenatal and infant periods. METHODS: A consensus expert panel of a paediatrician, gastroenterologists, nurses and dietitians was convened by the European Crohn's and Colitis Organisation. This panel critically reviewed literature related to the non-medical management of patients with IBD during preconception, pregnancy, the postnatal period and the first years of the infant's life. Statements were developed using an e-Delphi process over two rounds and were confirmed when ≥80% of experts agreed with the statements. RESULTS: A total of 19 current practice positions were developed that cover the preconception period, pregnancy and lactation, and early-life exposures associated with risk of IBD. Development of the infant microbiome and its role in the immune system and topics including nutritional optimization, psychological support and education relating to early life were reviewed. CONCLUSIONS: Patients with IBD have unique nutritional and psychosocial needs that may affect fertility and pregnancy outcomes. The early-life environment of infants born to parents with IBD may be associated with subsequent development of IBD in offspring. An MDT is the optimal setting to support and counsel patients throughout the perinatal period.