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

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

Systematic review: the impact of inflammatory bowel disease-related fatigue on health-related quality of life

Background: Fatigue is frequently reported in inflammatory bowel disease (IBD) and impacts on Health-Related Quality of Life (HRQoL). HRQoL has not been systematically reviewed in IBD fatigue. Aim: To investigate what impact IBD fatigue has on HRQoL in adults with IBD.Methods: Systematic searches (CINAHL, EMBASE, PsychInfo, Medline) were conducted 25.09.2018, restricted to ‘human’, ‘adult’, ‘primary research’ and ‘English language’. Search terms encompassed concepts of ‘Fatigue’, ‘IBD’ and ‘HRQoL’. A 5 year time limit (2013-2018) was set to include the most relevant publications. Publications were screened, data extracted, and quality appraised by two authors. A narrative synthesis was conducted.Results: Eleven studies were included, presenting data from 2823 participants. Fatigue experiences were significantly related to three HRQoL areas: symptom acceptance, psychosocial wellbeing, and physical activity. Patients reporting high fatigue levels had low symptom acceptance. Psychosocial factors were strongly associated with both, fatigue and HRQoL. Higher social support levels were associated with higher HRQoL. Physical activity was impaired by higher fatigue levels, lowering HRQoL, but it was also used as a means of reducing fatigue and improving HRQoL. Quality appraisal revealed methodological shortcomings in a number of studies. Notably use of multiple measures, comparison without statistical adjustment and fatigue and HRQoL assessment using the same tool

Interventions for fatigue in inflammatory bowel disease (Protocol)

This is the protocol for a review and there is no abstract. The objectives are as follows: The aim of this review is to assess the efficacy and safety of interventions for fatigue in IBD

Identification of research priorities for Inflammatory Bowel Disease nursing in Europe: a Nurses-European Crohn’s & Colitis Organisation Delphi survey

Background: Robust research evidence should inform clinical practice of inflammatory bowel disease (IBD) specialist nurses, but such research is currently very limited. With no current agreement on research priorities for IBD nursing, this survey aimed to establish topics to guide future IBD nursing research across Europe. Method: An online modified Delphi survey with nurse and allied health professional members of the Nurses European Crohn’s and Colitis Organisation (n=303) was conducted. In round one, participants proposed topics for research. In round two, research topics were rated on a 1-9 scale and subsequently synthesised to create composite research questions. In round, three participants selected their top five research questions, rating these on a 1-5 scale. Results: Eighty-eight, 90, and 58 non-medical professionals, predominantly nurses, responded to rounds one, two and three respectively, representing 13 European countries. In round one, 173 potential research topics were suggested. In rounds two and three, responders voted for and prioritised 125 and 44 questions respectively. Round three votes were weighted (rank of 1 = score of 5), reflecting rank order. The top five research priorities were: interventions to improve self-management of IBD; interventions for symptoms of frequency, urgency and incontinence; the role of the IBD nurse in improving patient outcomes and quality of life; interventions to improve IBD fatigue; and care pathways to optimise clinical outcomes and patient satisfaction. Conclusion: The prioritised list of topics gives clear direction for future IBD nursing research. Conducting this research has potential to improve clinical practice and patient-reported outcomes

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

The effect of increasing physical activity and/or omega-3 supplementation on fatigue in inflammatory bowel disease

Objective: Fatigue is frequently reported by patients with inflammatory bowel disease (IBD), irrespective of disease activity; however, evidence regarding fatigue management is limited. This study tested the effect of individualised advice to increase physical activity and/or omega-3 fatty acids supplementation, on IBD-related fatigue. Methods: A pilot study in patients with inactive IBD, utilising a randomised controlled 2x2 factorial design (four groups) compared baseline and post-intervention fatigque scores. Study interventions: individualised exercise advice (15 minute consultation) and/or supplementation (omega-3 fatty acids, 2970mg/day) for 12 weeks. Control interventions: general health discussion and/or placebo supplement. All patients received follow-up support. Primary outcome was fatigue measured by Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) scale score; secondary outcomes included change in Inflammatory Bowel Disease-Fatigue (IBD-F) scale score. Results: From n=656 screened patients, n=74 who met the selection criteria were randomised, n=60 commenced, and n=52 completed the study. Fatigue as tThe primary outcome fatigque, measured with FACIT-F, showed slight worsening in the omega-3 supplementation group (95%CI:-8.6-(-0.7);p=0.02), and no change in the exercise advice group (p=0.38). Reduced fatigue, measured by IBD-F score, was identified in the exercise group (95%CI:-3.8-(-0.2);p=0.03). One treatment-related adverse event (musculoskeletal pain) was reported with exercise. Conclusions: Advice to increase physical activity and omega-3 supplementation, singly or in combination, were shown to be safe and generally well-tolerated. There was no evidence of exercise-related adverse effects on gut-related symptoms, and some evidence of improvement in fatigue. The slight worsening of fatigue with omega-3 supplementation is unexplained. Regular moderate to -vigorous exercise may be a self-management option in IBD-related fatigue

Patient decision-making about emergency and planned stoma surgery for IBD: a qualitative exploration of patient and clinician perspectives

Background: Many IBD patients worry about stoma forming surgery (SFS), sometimes enduring poor bowel-related quality of life to avoid it. Anticipation of SFS and whether expectations match experience is under-reported. This qualitative study explored influences on patients’ SFS decision-making, and compared pre-operative concerns with post-operative outcomes. Methods: We purposively recruited participants with IBD from UK hospital outpatient and community sources, and IBD clinicians from public hospitals. Four focus groups and 29 semi-structured patient participant interviews, and 18 clinician interviews were audio recorded, transcribed, and analysed thematically. Participants had a current temporary, recently-reversed, or permanent stoma, or were stoma naïve. Results: Four themes emerged: Pre-operative concerns and expectations, Patient decision-making, Surgery and recovery, and Long-term outcomes. Participants and clinicians agreed about most pre-operative concerns, that outcomes were often better than expected, and support from others with a stoma is beneficial. Patient decision-making involves multiple factors, including disease status. Some clinicians avoid discussing SFS, and the phrase ‘last resort’ can bias patient perceptions; others recommend early discussion, increasing dialogue when medical management becomes ineffective. The post-operative period is particularly challenging for patients. Stoma acceptance is influenced by personal perceptions and pre- and post-operative clinical and social support. Conclusion: Patients need balanced information on all treatment options, including surgery, from an early stage. Early multi-disciplinary team dialogue about SFS, and contact with others living well with a stoma, could enable informed decision-making. Life with a stoma is often better than anticipated, improving quality of life and control. Ongoing specialist nursing support aids recovery and adjustment