Lesley Dibley

Faecal incontinence in inflammatory bowel disease: Associations and effect on quality of life☆

BACKGROUND AND AIMS No previous study has reported on faecal incontinence (FI) amongst people with IBD. We aimed to determine the frequency and severity of FI in people with IBD, its association with known FI risk factors, and the effect on quality of life. METHOD We randomly sampled 10,000 members of a national Crohns and Colitis organisation over 18years old. Demographic information, medical history, FI (ICIQ-B), urinary continence (ICIQ-UI), quality of life (IBD-Q) and free text responses about FI were collected. Current disease activity was reported using the Harvey Bradshaw Index for Crohns Disease (CD), and the Walmsley Index for ulcerative colitis (UC). Data were managed using Excel, Stata and SPSS 18. RESULTS 4827 responses were received: 3264 were complete and included (32.6% response). 2178 respondents were female (66.7%); mean age 50.26 yrs (range 19-92); CD 1543 (46.98%); UC 1599 (48.97%); other IBD 126 (3.85%); no diagnosis given 6 (0.18%). 74% (2391) of respondents reported FI (95% CI 72-75). Nine percent (299) reported regular FI. No association was found between FI and diagnosis. Significant associations were found in multivariable analysis between FI and age (p=0.005), gender (p<0.001), anal stretch (p=0.004), anal fistula surgery (p<0.001), colo-rectal surgery (p=<0.001), and urinary incontinence (p=<0.001), but not with vaginal delivery. Quality of life was significantly affected by FI (p<0.001). CONCLUSION Even if all non-respondents are continent, FI affects 24% of people with IBD. In our sample 74% reported FI, which can occur without active disease. There is a large currently unmet need for continence care in people with IBD.

Experiences of Fecal Incontinence in People with Inflammatory Bowel Disease: Self-reported Experiences Among a Community Sample

Background:Poor bowel control is a major concern of people with inflammatory bowel disease (IBD). Previous research demonstrates the impact of fecal incontinence (FI) on adults in the non-IBD population; there are no previous reports on the experience of IBD-related FI. Methods:We randomly sampled 10,000 members of Crohns & Colitis UK to receive a questionnaire to collect demographic information, medical history, continence status, quality of life, and free-text responses to questions about FI. Respondents could also choose to be interviewed about their experiences of living with IBD-related FI. This article presents findings from the free-text paper questionnaire responses and the interviews. Following transcription, data were sorted and analyzed using a pragmatic thematic approach. Results:We received 3264 eligible replies (32.6%). Twenty-eight interviews and 583 sets of questionnaire data were transcribed, continuing with the latter until no new themes emerged. The remaining questionnaires (n = 2681) were read to check that no issues had been missed. Several core themes emerged: emotional and psychological impact, feelings of stigma, limited lives, symptoms, practical coping mechanisms, access to facilities, and fear of incontinence. Discussion:Incontinence, and fear of it, limits social, working, and personal lives, impacting on people with IBD in complex ways. Key strategies, including situation avoidance and dietary restrictions, are used to cope. Incontinence is degrading and humiliating for most people, although a small number approach their situation positively. Conclusions:IBD-related FI, and fear of incontinence, causes multiple difficulties. People with IBD-related FI need help in accessing professional support.

Non-pharmacological intervention for gastro-oesophageal reflux disease in primary care

BACKGROUND Up to 50% of patients with gastro-oesophageal reflux disease (GORD) have persistent symptoms despite taking proton pump inhibitors (PPIs) regularly. Lifestyle advice is available to patients, but no previous UK study has tested a behavioural change intervention to help patients self-manage their symptoms. AIM To determine whether a primary care, nurse-led intervention to address behaviours that promote GORD symptoms results in symptom improvement, an increased sense of control, and a reduced requirement for prescribed medication. DESIGN OF STUDY A group intervention focusing on diet and stress was delivered to patients with reflux symptoms, recruited in rural general practices. SETTING General practice in England. METHOD Forty-two subjects (male 19, female 23) aged 31-86 years took part. Pre- and post-intervention data were gathered using the Brief Illness Perception Questionnaire (BIPQ), the GORD Impact Scale (GIS), and the Hospital Anxiety and Depression Scale (HAD). RESULTS There was a significant improvement (BIPQ P<0.001, GIS P = 0.008) 3 months after the intervention. There was no reduction in PPI use or change in HAD score. The greatest improvements were demonstrated in domains measuring the patients sense of control, perception of symptoms, and understanding of reflux. Patients reported benefits including understanding relevant anatomy and physiology, learning behavioural techniques to change eating patterns and manage stress, identifying actual and potential triggers, and developing and executing action plans. CONCLUSION An education programme for GORD enhances self-management, brings perceived symptom improvement, and promotes a sense of control at 3 months. This type of behavioural intervention, alongside medical management, could improve symptom control for reflux patients with refractory symptoms and should be the subject of a controlled trial.

Identification of Research Priorities for Inflammatory Bowel Disease Nursing in Europe: a Nurses-European Crohn’s and 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. Methods An online modified Delphi survey with nurse and allied health professional members of the Nurses European Crohns 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 Representing 13 European countries, 88, 90 and 58 non-medical professionals, predominantly nurses, responded to Rounds One, Two and Three, respectively. 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. Conclusions 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.

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.

Don't eat tomatoes: patient's self-reported experiences of causes of symptoms in gastro-oesophageal reflux disease.

BACKGROUND About 30-50% of patients with gastro-oesophageal reflux disease (GORD) experience refractory symptoms despite taking proton pump inhibitors regularly. Epidemiology studies suggest lifestyle risks, but these are under-represented in existing guidelines. The potential for changes to positively impact on symptoms may be underestimated. Lifestyle advice currently appears to be ineffective. OBJECTIVES To inform the future design of a behaviour change intervention aimed at improving symptoms for patients with GORD, by exploring patient understanding and experiences of lifestyle influences on GORD symptoms. METHODS We conducted semi-structured interviews with 23 patients (12 women and 11 men) aged 30-86 years, aiming to identify lifestyle influences perceived by patients to affect their symptoms. RESULTS Patients reported a wide range of daily influences on their symptoms, including diet, drinking with a meal, body position, alcohol, gaining weight, stress and anxiety. Dietary influences included types of food eaten and eating pattern-including speed of eating and meal size. Many foods were identified as troublesome, but not all foods affected all patients. Eating late and daytime tiredness were not recognized as causes or consequences of night-time reflux. CONCLUSIONS Patients stated that daily living patterns affected their reflux symptoms, but influences were highly variable between respondents. Lifestyle factors appear to combine in unique patterns for individuals, but GORD patients may not be able to identify potential triggers and make changes for themselves. A behaviour change intervention might prove beneficial to these patients.

Is there a role for lifestyle education in the management of gastro-oesophageal reflux disease?

Gastro-oesophageal reflux disease (GORD) is a common cause of morbidity, affecting 10–20% of adults. Despite taking proton pump inhibitors, a significant proportion of patients experience persistent symptoms. To review evidence for potentially modifiable lifestyle risk factors in GORD, we conducted a search using key terms of GERD/Gastroesophageal Reflux Disease, GORD/Gastro-oesophageal Reflux Disease, Dyspepsia and Heartburn. Studies were graded on the strength of evidence provided. Evidence for lifestyle issues influencing or relieving GORD symptoms is mixed. Diet, alcohol, activity, posture, smoking, obesity, sex and psychological stress/distress have been investigated. There is no conclusive evidence showing that modulating these factors is either effective or ineffective in GORD. Evidence from other chronic disease programmes show that lifestyle education interventions that include self-management strategies are highly effective in improving well-being and reducing health care costs. Patient self-management may potentially have a significant impact on GORD symptoms.

“It’s just horrible”: a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis

Around 50% of people with multiple sclerosis (MS) experience neurogenic bowel dysfunction (constipation and/or faecal incontinence), reducing quality of life and increasing carer burden. No previous qualitative studies have explored the experiences of bowel problems in people with MS, or the views of their family carers. This study sought to understand ‘what it is like’ to live with bowel dysfunction and the impact this has on people with MS and carers. Using exploratory qualitative methods, 47 semi-structured interviews were conducted with participants recruited from specialist hospital clinics and community sources using purposive and chain-referral sampling. Data were analysed using a pragmatic inductive-deductive method. Participants identified multiple psychological, physical and social impacts of bowel dysfunction. Health care professional support ranged from empathy and appropriate onward referral, to lack of interest or not referring to appropriate services. Participants want bowel issues to be discussed more openly, with clinicians instigating a discussion early after MS diagnosis and repeating enquiries regularly. Bowel dysfunction impacts on the lives of people with MS and their carers; their experience with care services is often unsatisfactory. Understanding patient and carer preferences about the management of bowel dysfunction can inform clinical care and referral pathways.

Development and initial validation of a disease-specific bowel continence questionnaire for inflammatory bowel disease patients: the ICIQ-IBD.

Background and aims Faecal incontinence (FI) related to inflammatory bowel disease (IBD) affects up to 74% of patients and is often under-reported in clinical encounters. A previous study found that several important bowel function concerns of patients with IBD are not addressed by existing FI questionnaires, especially differences between symptoms in relapse and remission. We have therefore adapted an existing FI assessment questionnaire specifically for patients with IBD. Methods A total of 190 people participated in this study. Phase 1 (development): the initial draft of the new questionnaire was developed from previously collected data and from results of a modified Delphi survey of IBD clinicians; questions were refined through six rounds of cognitive interviewing (n=24). Phase 2 (validation): the final version was tested (n=166) and retested (n=143) 3–4 weeks later. Results Missing data were minimal (1–4%). Weighted kappa analysis showed moderate-to-good agreement for test–retest data. Factor rotational analysis revealed the relationship of questions with each other. The new questionnaire has two domains: ‘Symptoms’ and ‘Quality of Life’, recording remission and relapse scores with simple summary scores for each. An additional 10 stand-alone questions address issues of specific concern to patients with IBD. The questionnaire demonstrates the ability to capture changing symptoms and concerns between remission and relapse. Conclusion The new questionnaire has good content validity and is stable and reliable. Further testing to establish sensitivity to change is needed. The scale can be used by patients, researchers and practitioners to assess severity, fluctuation and impact of IBD-related FI.

Faecal incontinence intervention study (FINS): self-management booklet information with or without nurse support to improve continence in people with inflammatory bowel disease: study protocol for a randomized controlled trial

BackgroundInflammatory bowel disease, comprising Crohn’s disease and ulcerative colitis, is a life-long currently incurable illness. It causes bouts of acute intestinal inflammation, in an unpredictable relapsing-remitting course, with bloody diarrhoea and extreme urgency to access a toilet. Faecal incontinence is a devastating social and hygiene problem, impacting heavily on quality of life and ability to work and socialise. Faecal incontinence affects 2–10 % of adults in the general population. People with inflammatory bowel disease have a high risk of incontinence with up to 74 % affected. No previous study has explored conservative interventions for these patients.MethodsThis randomised controlled trial will recruit 186 participants to answer the research question: does implementation of the UK nationally recommended guidance approach to stepwise management of faecal incontinence improve bowel control and quality of life in people with inflammatory bowel disease? We have worked with people with inflammatory bowel disease to translate this guidance into a condition-specific information booklet on managing incontinence. We will randomise participants to receive the booklet, or the booklet plus up to four 30-minute sessions with an inflammatory bowel disease specialist nurse. To be eligible, patients must be in disease remission and report incontinence. The primary outcome measure at 6 months after randomisation is the St Mark’s incontinence score. Other outcomes include quality of life, MY-MOP (generic tool: participants set two goals for intervention, grading goals at baseline and then re-scoring after intervention) and EQ-5D-5 L to enable calculation of quality-adjusted life years. Analysis will be on an intention-to-treat basis. Qualitative interviews will explore participant and health professionals’ views on the interventions.DiscussionFew high-quality studies of conservative interventions in inflammatory bowel disease, and none for faecal incontinence, have been conducted. We have collaborated with patients to design this study. Blinding to this behavioural intervention is not possible, but our self-report outcome measures with a degree of objectivity. There is genuine equipoise between the booklet only and booklet plus nurse arms, and the study will determine if additional support from a nurse is a crucial element in implementing advice.Trial registrationclinitrials.gov.uk: NCT02355834 (Date of registration: 12 December 2014).Protocol version: 4.0. 08.04.15