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Objective: The objective of this scoping review is to explore the experiences of patients' and healthcare practitioners on the factors that influence the care and management of diabetes-related foot ulcers (DFUs)., Methods: Levac et al's 6-stage framework and the Preferred Reporting Items for Systematic Review and Meta-analysis extension for scoping reviews, guided the review. The SPIDER tool was used to define key elements of the review question. Searches for relevant articles were conducted in electronic databases (PUBMED, CINAHL, AMED, Embase, Cochrane Database of Systematic Reviews, and PsycINFO), Google Scholar, and hand searches of reference lists., Results: Eight articles met the inclusion criteria and were included in the review. Three themes were identified: Communication and Education about DFUs; Challenges of managing DFUs; and Barriers to treatment and management. The themes are presented as a narrative synthesis., Conclusion: Inadequate knowledge of diabetic foot care by patients and inconsistent communication by healthcare professionals were primary factors affecting the effective management of diabetes-related foot ulcers. Consistent, patient-focused education that is supported by knowledgeable health care professionals should form the foundation of effective diabetic foot ulcer care., Competing Interests: Disclosure The authors have no conflicts of interest to disclose., (Copyright © 2024 AACE. Published by Elsevier Inc. All rights reserved.)

Aims: Surgical treatment for inflammatory bowel disease (IBD) potentially includes stoma formation. Although positive clinical outcomes are widely reported, patients' responses to stoma surgery, including coming to terms with and adjusting to the stoma, vary widely. This scoping review charts the qualitative literature addressing the question: What is known about any personal psychosocial and quality of life factors that inform adjustment to living well with an intestinal stoma for IBD?, Design: A scoping review methodology was employed., Data Sources: Searches of Scopus, Web of Science, CINAHL, Medline and PsycInfo in August 2023., Review Methods: Levac et al.'s (2010) methodology was followed. PRISMA-ScR guidelines were adhered to., Results: Thirteen cross-sectional studies were included, involving a total of 142 participants. Four themes were identified: (1) facilitative factors; (2) barriers to adjustment; (3) personal attributes; and (4) time and temporality. Data indicate that personal and psychological factors influence adjustment, but not how this occurs. Adjustment takes longer to achieve than is conventionally (clinically) expected., Conclusion: All available evidence is cross-sectional. The identified gap in the evidence is the notable lack of longitudinal research to assess, monitor and understand the complex process of adjustment in people with IBD having stoma-forming surgery. Detailed understanding of the process of adjustment would enable more targeted support for patients preparing for, and learning to live with, a stoma for IBD., Impact: This paper highlights the need to understand the multiple personal and psychosocial factors that affect adjustment to life with a stoma and identifies that adjustment takes significantly longer than the few weeks required to become competent in managing the stoma., Patient or Public Contribution: Not applicable., (© 2024 The Author(s). Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Background and Aims: The co-existence of fatigue, pain and faecal incontinence in people with Inflammatory Bowel Disease (IBD) is unknown. We aimed to determine the presence of and relationship between these symptoms and patients' desire for intervention., Methods: Adults with IBD in the UK, recruited from clinics, the national IBD-BioResource, a patient charity and social media sources, completed PROMIS validated patient-reported questionnaires to identify fatigue, pain and faecal incontinence, in addition to symptom severity and impact, disease activity, anxiety and depression questionnaires and questions about their desire for help with these symptoms. Statistical analysis used descriptive statistics to report presence of symptoms and Pearson correlation coefficients were calculated., Results: Of 8486 responses, 54% reported faecal incontinence, 24% reported fatigue, and 21% reported pain; 10% reported all three symptoms in the past 7 days. Only 29% reported none of these symptoms. Fatigue and pain were moderately correlated (Pearson correlation coefficient 0.57); both fatigue and pain had a lower correlation with faecal incontinence (0.43 and 0.46 respectively). On a 0-10 scale for severity, participants scored fatigue highest, followed by incontinence then pain. For impact, participants scored incontinence highest, followed by fatigue then pain. 56% reported depression (27% with clinically relevant levels) and 49% reported anxiety (20% with clinically relevant levels); 23% had previously medically diagnosed mental health disorders. 56% of respondents "definitely" wanted help for fatigue; 53% for incontinence; 42% for pain; 29% "definitely" wanted help with all three symptoms. Factors associated with all three symptoms were Crohn's disease (vs. ulcerative colitis), IBD activity, IBD Control score, anxiety, depression, and history of surgery (all p ≤ 0.0001)., Conclusions: Fatigue, pain and incontinence are common in IBD and patients desire help for these symptoms, currently a substantial unmet need. Anxiety and depression are common, are underdiagnosed, and are independently associated with these symptoms., Competing Interests: Declarations. Ethics approval and consent to participate: Ethics approval was received from North West - Greater Manchester West Research Ethics Committee (Reference no: 18/NW/0613) on 11th October 2018. Informed consent to participate was obtained from all participants either in writing (postal) or online before accessing the online version of the survey. The study conformed to the requirements of the Helsinki declaration and the principles of Good Clinical Practice (GCP). Consent for publication: Not applicable. Competing interests: Ailsa Hart: has served as consultant, advisory board member or speaker for AbbVie, Arena, Atlantic, Bristol-Myers Squibb, Celgene, Celltrion, Falk, Galapogos, Lilly, Janssen, MSD, Napp Pharmaceuticals, Pfizer, Pharmacosmos, Shire and Takeda. She also serves on the Global Steering Committee for Genentech.Laura Miller: NoneFionn Cléirigh Büttner: None.Thomas Hamborg: NoneSonia Saxena: is an NIHR Senior investigator, funded by the National Institute for Health Research (NIHR) School for Public Health Research Grant Reference Number NIHR 204000 and NIHR Northwest London Applied Research CollaborationRichard Pollok: has served as consultant, advisory board member, speaker and/or received educational grants from Dr Falk, Pharmacosmos, Takeda, Janssen, Napp pharmaceuticals and Ferring pharmaceuticals.Imogen Stagg: NoneVari Wileman: NoneQasim Aziz: Funding as PI from Classado Biosciences Ltd; Takeda Pharmaceuticals and Dr Falk Pharma UK for commercial clinical trials. Wladyslawa Czuber-Dochan: Speaker fees from Dr Falk Pharma and research funding from Bristol Myers Squibb and Crohn’s and Colitis UKLesley Dibley: funding to support research from Takeda, Janssen; speaker fees from Abbvie, Janssen and WedMD. BRUK advisory board. Borislava Mihaylova: None Rona Moss-Morris: NoneChris Roukas: NoneChristine Norton: Speaker fees from: Janssen, WebMD, Medscape, Merck Pharmaceutical; Tillotts Pharma UK. Pfizer advisory board., (© 2024. The Author(s).)

Adolescent idiopathic scoliosis (AIS) is the most common spinal disorder among children and adolescents, with most cases being diagnosed around puberty. While the majority of people with AIS do not undergo treatment, a small but significant number are treated, depending on the extent of their spinal curvature. Treatment typically involves bracing, which requires substantial adherence, and/or surgery, which is invasive and permanent. Furthermore, decisions about treatment often need to be made at a critical stage of the person's development. This article examines the evidence on AIS and its treatment, synthesising the current literature and drawing from the authors' empirical work to explore the clinical outcomes of bracing and surgery, as well as the longer-term effects on people's quality of life. Drawing from this evidence, the authors provide guidance for nurses and healthcare professionals who care for people with AIS., Competing Interests: None declared, (© 2024 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.)

Competing Interests: We declare no competing interests.

Background: During the COVID-19 pandemic, clinical services were severely disrupted, restricted, or withdrawn across the country. People living with Inflammatory Bowel Disease (IBD) - an auto-immune disorder for which medical treatment often results in immunosuppression, thus requiring regular monitoring-may have struggled to access clinical support. As part of a larger qualitative study, we investigated experiences of access to clinical services during the pandemic, and patient concerns about and preferences for services in the future., Methods: This exploratory qualitative study used semi-structured interviews to explore participants' experiences of clinical services across the UK during the pandemic. All data were collected remotely (March - May 2021) using online video-calling platforms or by telephone. Audio files were transcribed professionally and anonymised for analysis. Data were analysed using thematic analysis., Results: Of the eight themes found across all data, four related specifically to accessing GP, local (district) hospital, and specialist (tertiary) referral services for IBD: 1) The Risk of Attending Hospital; 2) Missing Routine Monitoring or Treatment; 3) Accessing Care as Needed, and 4) Remote Access and The Future., Conclusions: Our findings support other studies reporting changes in use of health services, and concerns about future remote access methods. Maintenance of IBD services in some form is essential throughout crisis periods; newly diagnosed patients need additional support; future dependence on IBD services could be reduced through use of treatment / self-management plans. As the NHS digitalises it's future services, the mode of appointment-remote (telephone, video call), or in-person - needs to be flexible and suit the patient., (© 2023. The Author(s).)

Purpose: The aims of this study were to test a noninvasive self-management intervention supported by specialist nurses versus intervention alone in patients with inflammatory bowel disease (IBD) experiencing fecal incontinence and to conduct a qualitative evaluation of the trial., Design: Multicenter, parallel-group, open-label, mixed-methods randomized controlled trial (RCT)., Subjects and Setting: The sample comprised patients from a preceding case-finding study who reported fecal incontinence and met study requirements; the RCT was delivered via IBD outpatient clinics in 6 hospitals (5 in major UK cities, 1 rural) between September 2015 and August 2017. Sixteen participants and 11 staff members were interviewed for qualitative evaluation., Methods: Adults with IBD completed the study activities over a 3-month period following randomization. Each participant received either four 30-minute structured sessions with an IBD clinical nurse specialist and a self-management booklet or the booklet alone. Low retention numbers precluded statistical analysis; individual face-to-face or telephone interviews, recorded digitally and transcribed professionally, were conducted to evaluate the RCT. Transcripts were analyzed thematically using an inductive method., Results: Sixty-seven participants (36%) of the targeted 186 participants were recruited. The groups comprised 32 participants (17% of targeted participants) allocated to the nurse + booklet intervention and 35 (18.8% of targeted participants) allocated to the booklet alone. Less than one-third (n = 21, 31.3%) completed the study. Given the low recruitment and high attrition, statistical analysis of quantitative data was considered futile. Participant interviews were conducted concerning study participation and 4 themes emerged that described experiences of patients and staff. These data provided insights into reasons for low recruitment and high attrition, as well as challenges of delivering resource-heavy studies in busy health service environments., Conclusions: Alternative approaches to trials of nurse-led interventions in hospital settings are needed as many interfering factors may prevent successful completion., Competing Interests: Conflicts of Interest:, (Copyright © 2023 by the Wound, Ostomy and Continence Nurses Society.)

Background: Inflammatory bowel disease (IBD) is a lifelong relapsing-remitting condition, characterized by troublesome symptoms including fatigue, pain, and bowel urgency. These symptoms can persist even in clinical remission and have a debilitating impact on social, work-related and intimate domains of life. Symptom self-management can be challenging for some patients, who could potentially benefit from an online self-management tool., Aims: We aimed to understand patients' symptom self-management strategies and preferred design for a future online symptom self-management intervention., Methods: Using exploratory qualitative methods, we conducted focus group and individual interviews with 40 people with IBD recruited from UK clinics and from community-dwelling members of the Crohn's and Colitis UK charity; data were collected using a digital audio recorder, and transcribed and anonymized by a third party (professional) transcriber. We used framework analysis for focus group data and thematic analysis for interview data., Results: The data provided three core themes: ways of coping; intervention functionality; and intervention content. Participants attempt to manage all three symptoms simultaneously, recognizing the combined influence of factors such as food, drink, stress, and exercise on all symptoms. They wanted an accessible online intervention functioning across several platforms, with symptom and medication management, and activity-tracking features., Conclusions: Patients reported numerous ways of self-managing symptoms of fatigue, pain, and urgency/incontinence related to IBD and expressed their needs for content, design, and functionality of the proposed intervention. Based on this and existing intervention development literature, the IBD-BOOST online self-management intervention has now been developed and is undergoing testing., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Introduction: This systematic scoping review sought to summarise and synthesise the qualitative evidence on adolescent idiopathic scoliosis (AIS) to understand the experiences of AIS, and of its diagnosis and treatment, and effective coping strategies to inform directions for future research., Method: A systematic scoping review and textual narrative synthesis was undertaken. Qualitative or mixed-methods studies with extractable qualitative data were included if participants had AIS, and patient or patient relative perspectives about AIS or its treatment were reported., Results: Fifteen papers were included. These suggested that AIS can influence self-image and perceptions of appearance and can cause those with the condition to reluctantly adjust parts of their lives and avoid some activities. The diagnosis and treatment of AIS is a major event and is often accompanied by shock, uncertainty, and anxiety. Whilst some find surgery stressful, others were relieved to have the surgery, and were generally happy with the outcome. Immediate family members may be distressed by the diagnosis and treatment of AIS., Discussion: AIS diagnosis and treatment has a substantial impact on adolescents and their families that is only addressed in part in this review. There is a pressing need for more qualitative research to understand needs, perspectives and experiences of adolescents with AIS and their families from the point of diagnosis, throughout treatment, and in the longer-term., (Copyright © 2022 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: Inflammatory bowel disease clinical nurse specialists (IBD-CNSs) face increasing pressures due to rising clinical and patient demands, advanced complexity of work role, and minimal specialist management training and support. Stress and burn-out could undermine the stability of this workforce, disrupting clinical provision. We reviewed the literature on stress and burn-out to demonstrate the lack of evidence pertinent to IBD-CNSs and make the case for further research., Design: Following Levac et al 's scoping review framework, relevant databases were searched for publications reporting work-related stress and burn-out among specialist nurses. Following screening and consensus on selection of the final articles for review, all authors contributed to data charting. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Scoping Review extension guided reporting of the review., Results: Of 194 retrieved articles, eight were eligible for review. None focused on IBD-CNSs, were qualitative, or UK-based. Three core themes were identified: Rates of Burn-out, Mitigating and Alleviating Factors, and Preventing and Resolving Burn-out. Risk of burn-out is greatest in novice and mid-career CNSs. Age and duration in role appear protective. Personal achievement is also protective and can mitigate earlier episodes of burn-out; opportunities for career progression are limited. Promoting personal well-being is beneficial. Senior managers have poor understanding of the role and provide inadequate support. Commitment to patients remains high., Conclusion: Burn-out arises in CNSs across clinical specialisms in the international literature and has a significant negative effect on the workforce. Further research is needed to address the dearth of evidence on burn-out in IBD-CNSs in the UK., Competing Interests: Competing interests: KK: Janssen, Takeda, Tillotts, Falk, MSD, Abbvie, Shield JD: employed full-time by Takeda UK as clinical nurse educator providing non-promotional education to IBD CNS SM: Takeda, consultancy on education resource development for IBD CNS LY: speaker fees from Ferring, Falk, Galapagos, Janssen, Sandoz, Tillotts and Takeda LD: funding to support research from Takeda, Janssen; speaker fees from Abbvie, Janssen and WedMD., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Bowel dysfunction, including constipation and fecal incontinence, is prevalent in individuals with multiple sclerosis (MS), adversely affecting quality of life and increasing caregiver burden. How health care professionals (HCPs) identify, assess, and manage people with MS with bowel dysfunction is understudied. This study explored how HCPs think about, assess, and manage bowel dysfunction in individuals with MS., Methods: Semistructured interviews were conducted with 18 HCPs from different professional disciplines and clinical specialties recruited from UK National Health Service primary, secondary, and tertiary care services using purposive and chain referral sampling through professional networks. One participant worked for a bladder and bowel charity. Data were analyzed using thematic analysis., Results: Views differed regarding responsibilities for providing bowel care. Participants thought individuals with MS should notify HCPs of bowel symptoms and take responsibility for self-management where possible, with family caregivers required to help with bowel care. Although people with MS were often referred to bladder and bowel specialists when a crisis point was reached, earlier referral was called for by these HCPs. There were variations in assessment processes, treatment options offered, and service provision. Participants thought HCPs needed more education on bowel dysfunction, bowel care should take a high priority, and evidence-based clinical guidelines and referral pathways would improve service delivery., Conclusions: The HCPs caring for individuals with MS see many with bowel dysfunction, and there is variation in care and service provision; HCPs require more education, evidence-based clinical guidelines, and referral pathways to improve case finding, assessment, and management of these symptoms for individuals with MS., Competing Interests: Financial Disclosures: The authors declare no conflicts of interest., (© 2022 Consortium of Multiple Sclerosis Centers.)

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 and 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., (© 2020. Springer Science+Business Media, LLC, part of Springer Nature.)

Introduction: Crohn's perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments and despite recommendations by a global consensus, there are currently no specific patient-derived quality of life tools to measure response to treatment. We present a new validated patient-reported outcome measure (PROM) for this complicated disease phenotype., Methods: A draft questionnaire was generated using unstructured qualitative patient interviews on the experience of living with Crohn's perianal fistula, a nationwide multidisciplinary consensus exercise, a systematic review of outcomes assessing medical/surgical/combined treatment and a patient and public involvement day. Psychometric properties were assessed including construct validity (by comparison with the Hospital Anxiety and Depression Scale (HADS) and the UK Inflammatory Bowel Disease Questionnaire (UK-IBDQ)), and reliability and responsiveness was assessed by test-retest analysis., Results: Data from 211 patients contributed to development of a final 28-item questionnaire. The Crohn's Anal Fistula Quality of Life (CAF-QoL) demonstrated good internal consistency (Cronbach's alpha 0.88), excellent stability (intraclass correlation 0.98) and good responsiveness and construct validity, with positive correlation with the UK-IBDQ and HADS., Conclusion: The CAF-QoL scale is ready for use as a PROM in research and clinical practice. It complements objective clinical evaluation of fistula by capturing impact on the patient., Competing Interests: Competing interests: KS, PJT and SOA have received honoraria from Takeda for sitting on an advisory board. PJT has received honoraria from Takeda for speaking at a symposium. LD: speaker fees from Janssen and AbbVie; consultancy fees from GL Assessments. CN: speaker’s fees from Takeda, Tillots Pharma and Ferring Pharmaceuticals. ALH has served as a consultant, advisory board member or speaker for AbbVie, Atlantic, Bristol Myers Squibb, Celltrion, Falk, Ferring, Janssen, MSD, Napp Pharmaceuticals, Pfizer, Pharmacosmos, Shire and Takeda. She also serves on the global steering committee for Genentech., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Prevalence of chronic gastrointestinal diseases has been rising amongst ethnic minority populations in Western countries, despite the first-generation migrants originating from countries of low prevalence. Differences caused by genetic, environmental, cultural, and religious factors in each context may contribute towards shaping experiences of ethnic minority individuals living with primary bowel conditions. This review aimed to explore the experiences of ethnic minority patients living with chronic bowel conditions., Methods: We conducted a systematic scoping review to retrieve qualitative, quantitative, and mixed methods studies from eight electronic databases, and manually searched reference lists of frequently cited papers., Results: Fourteen papers met the inclusion criteria: focussing on inflammatory bowel disease, irritable bowel syndrome, and coeliac disease. Core themes were narratively analysed. South Asians had limited understanding of inflammatory bowel disease and coeliac disease, hindered by language and literacy barriers, particularly for older generations, suggesting that culturally relevant information is needed. Family support was limited, and Muslim South Asians referred to religion to understand and self-manage inflammatory bowel disease. Ethnic minority groups across countries experienced: poor dietary intake for coeliac disease and inflammatory bowel disease, cultural conflict in self-managing diet for inflammatory bowel disease which increased anxiety, and there was a need for better quality of, and access to, healthcare services. British ethnic minority groups experienced difficulties with IBD diagnosis/misdiagnosis., Conclusions: Cultural, religious, and social contexts, together with language barriers and limited health literacy influenced experiences of health inequalities for ethnic minority patients living with chronic bowel diseases., (© 2021. The Author(s).)

Background: Despite being in clinical remission, many people with inflammatory bowel disease (IBD) live with fatigue, chronic abdominal pain and bowel urgency or incontinence that limit their quality of life. We aim to test the effectiveness of an online self-management programme (BOOST), developed using cognitive behavioural principles and a theoretically informed logic model, and delivered with facilitator support., Primary Research Question: In people with IBD who report symptoms of fatigue, pain or urgency and express a desire for intervention, does a facilitator-supported tailored (to patient needs) online self-management programme for fatigue, pain and faecal urgency/incontinence improve IBD-related quality of life (measured using the UK-IBDQ) and global rating of symptom relief (0-10 scale) compared with care as usual?, Methods: A pragmatic two-arm, parallel group randomised controlled trial (RCT), of a 12-session facilitator-supported online cognitive behavioural self-management programme versus care as usual to manage symptoms of fatigue, pain and faecal urgency/incontinence in IBD. Patients will be recruited through a previous large-scale survey of unselected people with inflammatory bowel disease. The UK Inflammatory Bowel Disease Questionnaire and global rating of symptom relief at 6 months are the co-primary outcomes, with multiple secondary outcomes measured also at 6 and 12 months post randomisation to assess maintenance. The RCT has an embedded pilot study, health economics evaluation and process evaluation. We will randomise 680 patients, 340 in each group. Demographic characteristics and outcome measures will be presented for both study groups at baseline. The UK-IBDQ and global rating of symptom relief at 6 and 12 months post randomisation will be compared between the study groups., Discussion: The BOOST online self-management programme for people with IBD-related symptoms of fatigue, pain and urgency has been designed to be easily scalable and implemented. If it is shown to improve patients' quality of life, this trial will enable clinicians and patients to make informed management decisions. This is the first trial, to our knowledge, focused on multiple symptoms prioritised by both people with IBD and health professionals., Trial Registration: ISRCTN71618461 . Registered on 9 September 2019., (© 2021. The Author(s).)

Rationale, Aims, and Objectives: The efficacy, cost-effectiveness, and safety of a number of endoscopic procedures are largely dependent on optimal preparation. Despite this however, inadequate or suboptimal preparation is relatively common. Most studies have revealed inadequate preparation for between 20% and 30% of patients. This audit sought to examine the impact of English language proficiency, and ethnicity, on endoscopic preparation and procedure success or failure., Method: A prospective audit was developed. Using convenience sampling, participants were consecutive patients recruited over a six-month period, who were aged 18 and over, attending an east London endoscopy ward for a routine (pre-booked) endoscopy procedure for which they had received preparation instructions to carry out at home., Results: Almost one-third of the sample had adequate or very poor English proficiency. When an interpreter was used it was overwhelmingly a member of the patients' family or a member of staff. There was no significant relationship between gender, age, ethnic group, English language proficiency, whether an interpreter was needed, the type of procedure carried out and inadequate preparation., Conclusions: Amongst these patients, we found that a little more than 20% of participants were inadequately prepared for their endoscopic procedure. We found no relationship between language proficiency on preparation. Given the mixed literature on interventions to improve preparation before endoscopic procedures, further directions are identified to work toward the development and testing of a novel intervention amongst this population. In identifying those who may be at risk for inadequate preparation for endoscopic procedures, practice needs to take into account a range of factors beyond language and ethnicity. Furthermore, the persistent reliance on family members to interpret information sheets and preparation advice suggests that revision and/or development of culture and language-specific materials is necessary., (© 2020 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

Objectives: To test two methods for reporting of fecal incontinence (FI) in people with inflammatory bowel disease., Methods: Consecutive patients from IBD clinics in six UK hospitals completed a short three-item case-finding survey about FI; they either completed the survey themselves or were asked the same questions face to face by a clinician., Results: Of 1336 eligible patients with complete data (48% male; mean 43 years; 55% Crohn's disease, 41% ulcerative colitis), 772 were asked about FI face to face, and 564 self-completed the survey: FI was reported in 63% and 56%, respectively (p = 0.012). In regression analyses, those aged 51-60, having Crohn's disease and higher disease activity, were more likely to report FI. Of all respondents, 38.7% were interested in receiving help for their incontinence., Conclusions: Fecal incontinence affects the majority of people with IBD. Although more patients reported fecal incontinence when asked face to face than self-reported, routine screening by either method in clinical practice is recommended. Over one-third of patients with IBD want help for bowel control problems.

Introduction: Idiopathic scoliosis is a musculoskeletal condition leading to deformity of the spinal column. There is strong evidence reporting short term health-related quality of life outcomes, but less is known about the longer-term impact of adolescent idiopathic scoliosis (AIS). This paper reports the current evidence on long-term non-clinical outcomes of AIS., Method: A systematic scoping literature review combining descriptive and textual narrative synthesis was undertaken. Studies were included if they: sampled or followed up participants at least 10 years after diagnosis and/or treatment, contained health-related quality of life data that could be extracted, where the intervention (or diagnosis in the case of untreated) occurred after 1980, and where data was extractable for modern rod and screw or fusion techniques, non-surgical interventions or untreated patients., Results: Twenty-three studies were included. Overall, the HRQOL measures utilised by these studies suggest that HRQOL is not related to participant demographics or AIS characteristics or type or extent of surgical intervention. Some studies suggest that those with AIS scored worse than controls., Discussion: Results suggest that AIS participants had a generally good quality of life, although this was often worse than those without AIS. No other clear relationships were found. The available literature fails to address more fundamental questions about how HRQOL is conceptualised for those with AIS, and there is value in pursuing qualitative inquiry in this area., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Background: Perianal fistulas are a challenging manifestation of Crohn's disease. Best medical and surgical therapy results in only about a third of patients remaining in remission at one year on maintenance treatment and sustained healing is often elusive. There is little published data on patient perspective of living with the condition or coping strategies in the face of non-curative/non-definitive treatment. We aimed to understand the experience of living with perianal fistula(s) and their impact on quality of life and routine functioning., Methods: This exploratory qualitative study used purposive sampling to recruit participants with current / previous diagnosis of Crohn's anal fistulas, from national IBD / bowel disease charities. The "standards for reporting qualitative research" (SRQR) recommendations were followed. Unstructured individual face-to-face interviews were audio recorded, transcribed and analysed thematically. Early themes were reviewed by the study team including patient advocates, clinicians and qualitative researchers., Results: Twelve interviews were conducted, achieving apparent data saturation. Three broad themes were uncovered: Burden of symptoms; Burden of treatment; and Impact on emotional, physical and social well-being. Each included several sub-themes, with considerable interplay between these. The impact of perianal fistula(s) on patients with CD is intense and wide reaching, negatively affecting intimate, close and social relationships. Fistulas cause losses in life and work-related opportunities, and treatments can be difficult to tolerate., Conclusion: Crohn's perianal fistulas exert a heavy negative physical and emotional impact on patients. These findings will inform development of a patient reported outcome measure to assess treatment effectiveness and quality of life for patients living with this challenging condition.

Recent evidence suggests that kinship stigma-the experience of being or feeling stigmatized by family members-arises in the stories of people with inflammatory bowel disease (IBD). Adopting Goffman's definition of stigma as "an attribute which is deeply discrediting," we used hermeneutic (interpretive) phenomenology to further explore the meaning of kinship stigma for people with IBD and reveal its significance. In total, 18 unstructured interviews took place in participants' own homes in the United Kingdom, between July 2015 and April 2016. Transcripts were analyzed using a hermeneutic method to reveal three relational themes and one constitutive pattern. Referring to relevant literature, the presence and impact of kinship stigma on people with IBD is revealed. Kinship stigma-experienced as and meaning a lack of acknowledgment-may have wide-ranging implications for health and social care professionals caring for persons with IBD or other chronic illness and their families.

Lesley Dibley , Reader in Nursing Research and Education, University of Greenwich (L.B.Dibley@greenwich.ac.uk), and Jennie Burch , Head of Gastrointestinal Nurse Education, St Mark's Hospital, outline the need to assess patients' emotional as well as physical needs before stoma surgery for IBD.

Background: Inflammatory bowel disease (IBD) imposes a heavy psychosocial burden, with many patients reporting anxiety, depression, and distress. In diseases such as diabetes, disease-specific distress is associated with concordance with treatments and disease control. IBD distress, distinct from anxiety and depression, is evident in people with IBD. We aimed to develop a questionnaire for assessing IBD-specific distress, validate this against a gold standard distress measure for diabetes, and demonstrate the difference between anxiety, depression, and distress., Methods: The 94-item IBD Distress Scale (IBD-DS) was developed through secondary analysis of 3 qualitative data sets from previous IBD studies. Items were then refined through cognitive interviews in 2 stages (n = 15, n = 3). Three supplementary unscored questions were added to enable patients to identify their overall level of distress, their perceived level of disease activity, and their 3 most distressing issues. Subsequently, the 55-item IBD Distress Scale was subjected to test-retest. Two hundred seventy-five people received the test draft IBD-DS, and 168 responded (60.4%). Of these, 136 (82%) returned the retest draft of IBD-DS 3 weeks later. After analysis, further item reduction was informed by response rates, kappa values, and correlation coefficients, and test-retest was repeated. One hundred fifty-four people received the test final 28-item IBD-DS, and 123 people responded (58.8%). Of these, 95 (77%) returned the retest final IBD-DS., Results: The 94 items were reduced to 28 items. Good intraclass correlation (ICC) was found between test-retest scores on 72 complete data sets with unchanged disease status (ICC, 0.92; 95% confidence interval, 0.88-0.95). Cronbach's alpha was 0.95, indicating excellent internal consistency. Factor analysis indicated scoring the items as a single domain (score range, 0-168)., Conclusion: The final IBD-DS performs well and offers a tool for assessing IBD-specific distress., (© 2018 Crohn’s & Colitis Foundation. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Aim: To explore experiences of stigma in people with inflammatory bowel disease., Background: Diarrhoea, urgency and incontinence are common symptoms in inflammatory bowel disease. Social rules stipulate full control of bodily functions in adulthood: poor control may lead to stigmatization, affecting patients' adjustment to disease. Disease-related stigma is associated with poorer clinical outcomes, but qualitative evidence is minimal., Design: An interpretive (hermeneutic) phenomenological study of the lived experience of stigma in inflammatory bowel disease., Methods: Forty community-dwelling adults with a self-reported diagnosis of inflammatory bowel disease were recruited purposively. Participants reported feeling stigmatized or not and experiencing faecal incontinence or not. Unstructured interviews took place in participants' homes in the United Kingdom (September 2012 - May 2013). Data were analysed using Diekelmann's interpretive method., Findings: Three constitutive patterns-Being in and out of control, Relationships and social Support and Mastery and mediation-reveal the experience of disease-related stigma, occurring regardless of continence status and because of name and type of disease. Stigma recedes when mastery over disease is achieved through development of resilience-influenced by humour, perspective, mental well-being and upbringing (childhood socialization about bodily functions). People travel in and out of stigma, dependent on social relationships with others including clinicians and tend to feel less stigmatized over time., Conclusion: Emotional control, social support and mastery over disease are key to stigma reduction. By identifying less resilient patients, clinicians can offer appropriate support, accelerating the patient's path towards disease acceptance and stigma reduction., (© 2017 John Wiley & Sons Ltd.)

Background: Many inflammatory bowel disease (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 underreported. This qualitative study explored influences on patients' SFS decision-making and compared preoperative concerns with postoperative outcomes., Methods: We purposively recruited participants with IBD from UK hospital outpatient and community sources, and IBD clinicians from public hospitals. Four focus groups, 29 semistructured 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 naive., Results: Four themes emerged: Preoperative concerns and expectations, Patient decision-making, Surgery and recovery, and Long-term outcomes. Participants and clinicians agreed about most preoperative 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 postoperative period is particularly challenging for patients. Stoma acceptance is influenced by personal perceptions and pre- and postoperative clinical and social support., Conclusion: Patients need balanced information on all treatment options, including surgery, from an early stage. Early multidisciplinary 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., (© 2018 Crohn’s & Colitis Foundation of America. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com)

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.

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 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: 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., (Copyright © 2016 European Crohn’s and Colitis Organisation (ECCO). Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com)

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.

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.

Purpose: The purpose of this study was to enhance our understanding of factors that influence help-seeking in people with inflammatory bowel disease (IBD)-related fecal incontinence (FI), and their needs or desire for continence services., Subjects and Setting: We conducted a survey of FI in community-dwelling people with IBD, all members of a United Kingdom IBD charity, and received 3264 responses. As part of the study, we asked 3 questions about help-seeking for IBD-related FI to which respondents were able to give free-text responses. We analyzed the responses to these help-seeking questions, continuing until data saturation when no new themes emerged (617 free text comments analyzed, 19% of total respondents)., Methods: For the full survey, a mixed-methods design was used to collect and analyze quantitative and qualitative data. Qualitative (free-text) responses relating to help-seeking behavior reported in this article were analyzed using a pragmatic thematic approach., Results: Seventy-four percent of the total sample (2415 out of 3264 respondents) reported some degree of FI. Of these, only 38% (n = 927) reported seeking help for FI. In the data reported in this article (n = 617), only 13.5% reported seeking help for FI. Help was described as satisfactory, unsatisfactory, or alternative (acupuncture, counseling, hypnotherapy). Reasons for not seeking help included believing nothing could be done, not knowing who to ask, feeling too embarrassed, ashamed or dirty, and perceived lack of interest, sympathy, or understanding from health care professionals. Although respondents wanted to talk to "someone with specialist knowledge about incontinence" only 6 out of 617 (0.9%) reported awareness of specialist continence services. Standard treatments were rarely mentioned (n = 2). Respondents' focus was on better management of FI rather than on cure., Conclusions: Many people with IBD-related FI are not aware of the services or treatments that are available to help them manage this distressing problem, and most do not seek help, often due to embarrassment and lack of knowledge that help might be possible. Clinical staff could communicate their awareness for the potential for FI to occur by proactively asking about symptoms during clinic appointments to provide an opportunity for symptoms to be disclosed and described.

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 Crohn's & 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.

Aim: In health and social care research, pure naturalistic enquiry often seeks to understand personal experiences, and adopts data collection methods that can generate vast amounts of rich, thick text. This article demonstrates the way in which the author used a particular approach to analyse the complex narrative data arising from her MPhil research into experiences of lesbian parents in the healthcare system., Background: Narrative data is often cumbersome, prolific and chaotic, and it can be difficult to manage such data effectively while remaining sympathetic to the original meaning of the storyteller. Guidance exists on what narrative analysis should achieve, but finding ways of interpreting and demonstrating meaning in different types of stories can be challenging., Data Sources: The data discussed here arose from six unstructured interviews with ten lesbian parents from across the UK, collected in 2003-04 during the author's MPhil studies., Review Methods: The use of McCormack's Lenses to analyse narrative data supported the philosophical underpinnings of Heideggerian phenomenology which provided the framework for the research endeavour., Discussion: Locating the analysis method that best suits the methodology, purpose and data is not always easy. Naturalistic or qualitative researchers may need to make extra effort to explain the philosophical and practical aspects of their work, and while it can be tempting to select an adequate analysis approach, seeking out the framework which best fits the data will enhance the credibility of the findings, Conclusion: McCormack's Lenses provides a flexible framework for the analysis of complex narrative data. It enables the researcher to take core themes and stories of experience in the original story and reveal these to the reader with openness. As well as remaining true to the original story, the framework enables the researcher to demonstrate that the reported findings are situated in the original data.

Objective: To test the effectiveness of a prenatal intervention in reducing the incidence of postnatal depression., Design: A randomized controlled trial., Setting: A large metropolitan obstetric hospital., Population or Sample: Pregnant women with risk factors for postnatal depression., Methods: Women attending their first prenatal visit at the Royal Women's Hospital, Brisbane, were screened for risk factors for postnatal depression (IDentify). Positively screened women were randomly allocated to the intervention group or the control group. The intervention consisted of a booklet about postnatal depression, which included contact numbers; prenatal screening using the Edinburgh Postnatal Depression Scale; a discussion with the woman about her risk of developing postnatal depression (Educate); and a letter to the woman's referring general practitioner and local Child Health Nurse, alerting them of the woman's risk for postnatal depression (Alert)., Main Outcome Measure: Edinburgh Postnatal Depression Scale Score > 12 at 16 weeks postpartum., Results: Of the 509 women who were sent a follow-up questionnaire, 371 (72.9%) responded. The proportion of women who reported an Edinburgh Postnatal Depression Scale score of >12 was 26%. There were no significant differences between intervention (46/192, 24%) and control groups (50/177, 28.2%) on this primary outcome measure (OR 0.80; 95% CI 0.50-1.28)., Conclusion: Over one-quarter of women with risk factors will develop postnatal depression. It is a treatable disorder but under-diagnosis is common. Efforts to reduce postnatal depression by implementing interventions in the prenatal period have been unsuccessful.

The purpose of this study was to assess the effectiveness of a practical antenatal screen used at the Royal Women's Hospital, Brisbane, to identify women at risk for postnatal depression. It was a prospective, hospital-based, cohort study of 901 women (600 with and 301 without prenatal risk factors for postnatal depression). Depression was measured 16 weeks after the birth using the Edinburgh Postnatal Depression Scale. More of the women with a prenatal risk factor for depression (25.9%) scored above 12 on the Edinburgh Postnatal Depression Scale than those without any risk (10.9%) (p < or = 0.001). Low social support (p < or = 0.001), a personal history of mood disorder (p < or = 0.001) and a past history of postnatal depression ( p = 0.002) were all strongly associated with postnatal depression in this sample. Results indicate that an objective, psychosocial assessment during pregnancy improves recognition of women at risk for postnatal depression.