Targets for interventions for faecal incontinence in inflammatory bowel disease: a systematic review

Proudfoot, Hannah; Norton, Christine; Artom, Micol; Didymus, Eve; Kubasiewicz, Sylwia; Khoshaba, Bernadette

doi:10.1080/00365521.2018.1543451

Cited by 10 publications

(10 citation statements)

References 43 publications

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“…We therefore used the word 'urgency' as a euphemism for 'incontinence', to respect patient preference. The topic guide [Table 1] was developed in partnership with our PPI panel and informed by our previous studies 6, [13][14][15][16] , systematic reviews 17,18 and knowledge of issues with development of online self-management programmes [19][20][21] . During focus groups, one team member facilitated the discussion whilst another acted as observer, taking field notes including a sketch of the layout, seating arrangement and first names of participants, and brief notes on the dialogue.…”

Section: Data Collectionmentioning

confidence: 99%

Patient Strategies for Managing the Vicious Cycle of Fatigue, Pain and Urgency in Inflammatory Bowel Disease: Impact, Planning and Support

et al. 2020

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Background Inflammatory Bowel Disease (IBD) causes inter-related symptoms of fatigue, pain and urgency which can persist in remission.Aim To understand how people with IBD experience and self-manage these symptoms, to inform the future development of an online self-management programme.Methods Using exploratory qualitative methods, we recruited participants from clinic and community settings. Focus groups, conducted across the UK, were audio recorded and professionally transcribed. Transcripts were analysed over four rounds using framework analysis. Eight patients were consulted to agree the final structure of data and themes.Results Seven focus groups were held; five gave useable data. Twenty-six participants (15 female; ages 21 -60 years; disease duration 2-40 years) with Crohn's Disease (n=10), ulcerative colitis (n=14) and IBD-Unclassified (n=2) attended one of these five focus groups.Three core themes emerged: The Negative Impact of Symptoms, Positively Taking Control, and Seeking and Receiving Support.The persistent, often stark impact of multiple co-existing symptoms on physical and emotional wellbeing can force unwanted adjustments and limitations in working, social and intimate arenas of life. Unpredictable symptoms are challenging and impact each other in negative vicious cycles. Managing diet, pacing, accepting background levels of fatigue, pain and urgency, seeking support, exercising and attending to mental wellbeing, are all perceived as helpful in self-managing symptoms.Conclusion Fatigue, pain, and urgency are troublesome for patients, especially in combination, suggesting that these should be addressed simultaneously by clinicians.Participants reported several strategies for self-management, providing patient-focused evidence to inform future development of a self-management intervention programme.

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Section: Data Collectionmentioning

confidence: 99%

Patient Strategies for Managing the Vicious Cycle of Fatigue, Pain and Urgency in Inflammatory Bowel Disease: Impact, Planning and Support

et al. 2020

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“…Although physiological triggers may differ, similar affective, cognitive, and behavioral responses to symptoms appear to exacerbate and maintain symptoms across long-term conditions [ 49 ]. A number of systematic reviews have identified specific cognitive, behavioral, and emotional factors associated with fatigue, pain, and urgency, along with other psychological factors [ 7 , 15 , 16 , 50 , 51 ]. Anxiety and depression were found to be associated with each symptom independent of disease activity.…”

Section: Resultsmentioning

confidence: 99%

“…In IBD, pain, acceptance, pain self-efficacy, and mental well-being are associated with lower pain severity and pain-related disability [ 53 , 56 ]. A range of safety-seeking and avoidance behaviors designed to avert the possibility of incontinence was identified as often having a significant cognitive and affective burden [ 8 , 16 , 61 , 62 ].…”

Section: Resultsmentioning

confidence: 99%

“…Research has demonstrated the complex, multidimensional, and multifactorial pathogenesis of these symptoms. Extensive evidence demonstrates the interactive role of specific cognitive, behavioral, and emotional factors in the experience of fatigue, pain, and urgency/incontinence in IBD [ 7 , 15 , 16 ]. These factors also affect the QoL of patients with IBD.…”

Section: Introductionmentioning

confidence: 99%

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A Novel Digital Self-management Intervention for Symptoms of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Describing the Process of Development

Sweeney¹,

Windgassen²,

Artom³

et al. 2022

JMIR Form Res

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Background Empirical studies and systematic reviews have demonstrated the role of biological, cognitive, behavioral, and emotional factors in fatigue, pain, and urgency in inflammatory bowel disease (IBD). Behavioral management that addresses the cognitive, behavioral, and emotional factors offered alongside medical treatment is seldom available to people with IBD. Digital interventions provide a potentially scalable and cost-effective way of providing behavioral support to patients. Objective This paper aimed to describe the process of developing a supported digital self-management intervention for fatigue, pain, and urgency in IBD using theory and evidence-based approaches and stakeholder input. Methods The Medical Research Council framework for complex health interventions and a person-based approach were used to guide intervention development, consulting with 87 patients with IBD and 60 nurses. These frameworks informed the selection and use of a theoretical model that subsequently guided cognitive behaviorally based intervention content. They also guided the design of tailored digital intervention pathways for individuals with IBD that matched the predominant symptoms. Results A transsymptomatic cognitive behavioral framework of symptom perpetuation was developed for the symptoms of fatigue, pain, and urgency in IBD. A logic model was used to define the intervention techniques. Patient feedback and qualitative interviews refined the website content and functionalities, including the use of visual aids, email reminders, and graphical tracking of symptoms. Nurse focus groups informed the volume and delivery model of the therapist facilitator support. Ratings of acceptability out of 10 following feasibility testing (31/87, 36%) demonstrated accessibility (scoring 9.43, SD 1.040), ease (scoring 8.07, SD 3.205), clarity, and the relevant tone of the intervention. The final intervention comprised 12 web-based sessions (8 core and 4 symptom-specific), with one 30-minute facilitator phone call following session 1 and subsequent on-site messaging. Conclusions The use of theory and integration of stakeholders’ views throughout informed the development of an evidence-based digital intervention for fatigue, pain, and urgency in IBD. This is the first web-based self-management intervention designed to address these multiple symptoms with the aim of improving the quality of life and reducing the symptom burden of IBD. The intervention is being tested in a large multicenter randomized controlled trial. Trial Registration ISRCTN Registry ISRCTN71618461; https://www.isrctn.com/ISRCTN71618461

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“…The major symptoms of UC are diarrhea, bloody stools, abdominal pain [1][2][3], urgent and nocturnal defecation. Urgent defecation has been identi ed as an important symptom in many studies [4][5][6][7], is emphasized in the United States guidelines, and is used as a success index for diagnosis and treatment [8]. An online survey of Japanese UC patients con rmed that urgent defecation correlates with a decrease in the patient's quality of life (QOL) [4].…”

Section: Introductionmentioning

confidence: 99%

Nocturnal and Urgent Defecation are Improved by Budesonide Foam in Patients with Ulcerative Colitis: a retrospective observational study

Saruta

Miyazaki

Sakurai

et al. 2022

Preprint

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Introduction: Patients with ulcerative colitis (UC) are known to have a significantly poor quality of life due to urgent and nocturnal defecation. Budesonide foam is a topical medication that was approved in Japan in 2017 for the treatment of UC. However, its efficacy in the treatment of urgent or nocturnal defecation is unknown. This study aimed to explore the efficacy of budesonide foam for the alleviation of these symptoms.Methods: UC patients who received budesonide foam between December 2017 and January 2020 at the Jikei University School of Medicine in Tokyo were enrolled. The simple clinical colitis activity index (SCCAI) was evaluated at the start of budesonide foam treatment and 2 and 6 weeks later in patients who initially scored ≥ 1 for urgent and nocturnal defecation, respectively. We also studied the effect of budesonide foam on remaining symptoms in patients who had used 5-aminosalicylic acid (5-ASA) topical treatment, those with SCCAI ≥ 3, and those in remission with residual symptoms (SCCAI 1 or 2).Results: Of the 233 enrolled patients, 102 were eligible for the study. In 36 patients with nocturnal defecation treated with budesonide foam were significantly effective, score in SCCAI decreased from 1.17 ± 0.45 at baseline to 0.53 ± 0.61 at week 2 (p < 0.0001) and 0.17 ± 0.38 at week 6 (p < 0.0001). In 45 patients with urgent defecation score in SCCAI decreased significantly from 1.33 ± 0.52 at baseline to 0.44 ± 0.59 at week 2 (p < 0.0001) and 0.22 ± 0.40 at week 6 (p < 0.0001). Of 22 patients who switched from topical 5-ASA administration to budesonide foam, nine at week 2 (41%) and 11 (50%) at week 6 were improved with no symptoms, and there were no cases of worsened symptoms. No severe side effects associated with budesonide foam were observed.Conclusion: Budesonide foam administration significantly improves both nocturnal and urgent defecation-related UC activity and is also effective for the patients who were refractory to topical 5-ASA administration.

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Targets for interventions for faecal incontinence in inflammatory bowel disease: a systematic review

Cited by 10 publications

References 43 publications

Patient Strategies for Managing the Vicious Cycle of Fatigue, Pain and Urgency in Inflammatory Bowel Disease: Impact, Planning and Support

Patient Strategies for Managing the Vicious Cycle of Fatigue, Pain and Urgency in Inflammatory Bowel Disease: Impact, Planning and Support

A Novel Digital Self-management Intervention for Symptoms of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Describing the Process of Development

Nocturnal and Urgent Defecation are Improved by Budesonide Foam in Patients with Ulcerative Colitis: a retrospective observational study

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