A scoping review of the qualitative literature reporting experiences of living with a stoma for inflammatory bowel disease.

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.

"You're just on your own": Exploring bowel symptom management needs after rectal cancer surgery through patient and clinician focus groups.

PURPOSE: Currently cancer survivorship often leaves the needs of patients unidentified and unmet. The study aims to establish the views of experts on managing bowel symptoms following rectal cancer surgery. METHOD: People living with bowel symptoms as well as clinicians with expertise in rectal cancer and subsequent bowel changes were invited to participate in online focus groups. Focus groups were recorded, transcribed verbatim and analysed using a modified framework analysis. Results were presented narratively with interpretations and quotations. RESULTS: Fourteen patients following rectal cancer treatment attended one of two focus groups. Sixteen clinicians attended one of four groups. Participants described their opinions about bowel symptom management. Three themes were described by both patients and clinicians: expectations of bodily changes, supported self-repair and knowledgeable self-repair. Data from participants frequently concurred; all recognised clinicians needed to support and empower patients to independently manage their cancer consequences. CONCLUSION: Well-managed expectations enable patients to set realistic goals and make plans. Clinicians need to support patients to understand potential bowel changes that might occur after rectal cancer surgery, providing support, information and signposting to other relevant information and colleagues. Effective communication through avoidance of jargon and rapport building as well as providing a point of contact help prevent patients feeling alone with their symptoms. Education is needed by both clinicians and patients to ensure consistent and useful advice is provided and understood. A recommendation from the focus groups is to create opportunities for patients to access information with clinician support and signposting.

'He's a surgeon, like I'm not going to waste his time': interviews to determine healthcare needs of people with low anterior resection syndrome after rectal cancer surgery.

AIM: The aim of this study was to determine the views of people on their healthcare needs when managing their bowel symptoms following an anterior resection. METHOD: One-to-one, semi-structured interviews were undertaken, after consent and completion of three questionnaires. Results were analysed using a modified framework analysis and presented narratively. RESULTS: Twenty three participants aged 38-75 years were interviewed; 10 were men. Most had low anterior resection syndrome (LARS) scores indicating 'major LARS', Bowel Function Index scores ranged from 28 to 65. The two most bothersome symptoms were faecal incontinence and unpredictable bowel function. Data were grouped into three broad themes: 'treatment consequences', 'strategies and compromises' and 'healthcare needs.' Each theme had four subthemes, such as 'bowel dysfunction' in the theme 'treatment consequences'. Bowel symptoms were common and persistent. Symptom management often required multiple interventions. Expressed healthcare needs included managing expectations through clinician-led information. Participants needed knowledgeable clinicians to enquire about and assess symptoms, provide and reiterate information as well as making an onward referral to enable symptom management. Peers improved the adaptation process through support and advice. Our findings indicate that participants' needs are not being fully met. CONCLUSION: People with LARS have unmet healthcare requirements needed to meet their individual goals. We propose these are addressed by using the acronym 'LARS': a Learned clinician who Asks and assesses bowel symptoms, Revisiting the topic to address new or persisting symptoms as well as Signposting, advising or referring onwards as needed.

Intervention pathways for low anterior resection syndrome after sphincter-saving rectal cancer surgery: A systematic scoping review.

AIM: Low anterior resection syndrome (LARS) has a large impact on patients' quality of life. Several heterogeneous intervention pathways are suggested in the literature. The steps and timing of the different steps in the pathways are unclear. This systematic scoping review aims to map the range of intervention pathways for LARS after sphincter-saving rectal cancer surgery. METHODS: A search was undertaken on four databases (CINAHL, EMBASE, PubMed, and Web of Science). Any type of paper describing intervention pathways for patients with LARS following sphincter-saving surgery was included. Excluded were patients with a stoma, no full paper, no intervention pathway and not being written in English or Dutch. The review was registered with Open Science Framework (10.17605/OSF.IO/JB5H8). Narrative synthesis of the results was performed by charting and summarising key results. RESULTS: A total of 373 records were screened and 12 papers were included. There was a high variability among the intervention pathways, including which patients should be included. The number of pathway steps ranged from 2-6. Most intervention pathways were treatment-led. Intervention options ranged from conservative measures to a permanent stoma. Pathway flow was highly variable and sometimes not well described, with different or no timings provided for the start, progression, or end of the pathways. Three studies discussed the use of a nurse to coordinate the pathway. CONCLUSION: This systematic scoping review shows that despite similarities in treatment options there are variations in which treatments are included, when treatments should be instigated, and even which patients should be treated.

Stoma-related considerations in palliative patients.

In the community there are about 200 000 people with a stoma. Some of these may have been performed as a palliative procedure to relieve a bowel obstruction, for example. Alternatively, the condition of the patient may have altered. A person with a stoma may, for many reasons, be approaching the end of life. There are a number of stoma-related issues that can occur at the end of life as a result of cancer treatment, such as skin around the stoma being damaged as a result of chemotherapy or changes in weight. In the palliative setting, patients may no longer be able to independently care for their stoma and may require assistance from the community nurse. Input from the community nurse may include information on changing stool consistency, as a result of disease progression or cancer treatment. Alternatively, nursing input might be necessary to train carers to perform stoma care. Community nurses can also provide knowledge to patients to improve understanding and decrease anxiety at the end of life.

Managing Bowel Symptoms After Sphincter-Saving Rectal Cancer Surgery: A Scoping Review.

CONTEXT: Rectal cancer is common and it is often treated by surgery with or without chemoradiation. Cancer treatment frequently results in bowel symptoms. OBJECTIVES: The review aim was to chart the management options for bowel symptoms following rectal cancer surgery. METHODS: A scoping review was undertaken searching nine healthcare databases, using relevant search terms and Boolean operators following PRISMA-ScR guidance. Data were extracted into an Excel spreadsheet using headings from the United Kingdom Department of Health guidance and are reported narratively. RESULTS: 30 heterogeneous studies met the inclusion criteria, including 853 patients. The most commonly reported bowel symptom was fecal incontinence; the most frequent management strategy was sacral nerve stimulation. Most studies reported on a single management option, often used to manage more than one bowel symptom. Often failure to satisfactorily improve symptoms using options such as medication was needed prior to progressing to other management options. In some studies more than one management option was used, such as rehabilitation programmes. CONCLUSION: It is likely that to effectively manage the bowel symptoms experienced after rectal cancer treatment, more than one management option may be used-. Additionally, different management options may need to be tried concurrently.

Symptoms affecting quality of life after sphincter-saving rectal cancer surgery: A systematic review.

PURPOSE: Rectal cancer is common and is frequently treated with surgery which removes the rectum but retains anal sphincters. After sphincter-saving rectal cancer surgery, which can result in a reduced rectal storage capacity and nerve damage, symptoms frequently occur. METHOD: A systematic review was undertaken to determine which symptoms occur and their effect on quality of life. Data from questionnaires and interviews were analysed thematically. RESULTS: Fourteen heterogeneous studies were identified reporting both qualitative and quantitative data on over 1700 individuals. The most commonly reported symptoms related to bowel changes. The most problematic changes were bowel and sexual dysfunction. Quality of life was most affected by an inability to function as individuals desired, specifically in their chosen role and socially. Quality of life improved as time progressed or symptoms resolved; but symptoms could persist for many years. CONCLUSION: After sphincter-saving rectal cancer surgery quality of life is affected by symptoms such as bowel dysfunction. Healthcare professionals need to gain a better understanding of which symptoms most bother individuals to enable patient-focussed interventions to be planned and improve quality of life.

Bowel dysfunction after surgery.

The functions of the lower parts of the bowel, namely the colon and rectum, are predominantly the absorption of fluids and elimination of faeces and flatus. Bowel surgery may be carried out in the treatment of colorectal cancer, inflammatory bowel disease or diverticular disease, and may involve the formation of a permanent or temporary stoma. The type of colorectal surgery carried out depends on the condition and where the problem occurs. Surgery can alter not only the bowel's anatomy but also its functioning. Bowel dysfunction can manifest as constipation, faecal incontinence or diarrhoea. Nurses are well placed to assist patients to resolve many of these problems as well as stoma issues.

Helping patients live well with a stoma for inflammatory bowel disease: directions for future research.

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.

Exploring the fundamental aspects of the Enhanced Recovery After Surgery nurse's role.

Enhanced Recovery After Surgery (ERAS) is a multimodal, multidisciplinary programme that aims to limit surgical stress during the perioperative period. The importance of a facilitator to improve patients' compliance with the ERAS pathway and ensure its successful implementation is described in the literature. This role is commonly undertaken by a nurse, but it is unclear what their role entails in practice. AIM: To investigate the common aspects of the role of the ERAS nurse, and similar roles. METHOD: A modified Delphi technique was used to explore the opinions of ERAS nurses, facilitators and their colleagues in the UK. A series of consensus statements on the role of the ERAS nurse were produced that were voted on and agreed via an online survey, then subsequently voted on at the seventh ERAS UK conference. RESULTS: Six consensus statements were proposed and agreed in the second round of voting. In the final round of voting, consensus was reached on four of the six statements related to data collection, patient education, staff education and patient support throughout the pathway. The two statements that did not reach consensus were related to leadership and project management. CONCLUSION: It is hoped that by producing these consensus statements, the role of the ERAS nurse will be better understood by all members of multidisciplinary ERAS teams, particularly managers and decision-makers, and can be supported in the future.

Understanding the benefits and implications of Enhanced Recovery After Surgery.

Enhanced Recovery After Surgery (ERAS) programmes are an innovative approach to optimising patient outcomes in the perioperative period and have been implemented in various surgical departments across a range of specialties, with varying degrees of success. ERAS is an evidence-based, multimodal programme that has repeatedly demonstrated a reduction in post-operative complications and reduced the length of hospital stays following elective surgery. However, despite extensive evidence to support these benefits, several barriers to ERAS implementation have been identified. This article outlines the components of ERAS, focusing on the barriers to its implementation and how these could be overcome. It also discusses the implications of ERAS for patients, nurses and healthcare organisations.

Research and expert opinion on siting a stoma: a review of the literature.

Marking the optimal position for a stoma on the patient's body before an operation is likely to result in fewer postoperative problems such as appliance leakage. A literature search was undertaken to examine and evaluate current practice internationally. Four recent articles describe the procedure; these articles were consensus documents or expert opinion, with limited robust research to support the statements made. Despite some variations in techniques, there was general agreement within the articles. Interestingly, when comparing recent and historical information on stoma siting, there were reassuringly few changes. Thus, in practice, although poorly researched, it is considered essential for people to have their stoma site marked as part of their preoperative preparation before elective stoma-forming surgery.

Patient Decision-Making About Emergency and Planned Stoma Surgery for IBD: A Qualitative Exploration of Patient and Clinician Perspectives.

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.

Consensus on Training and Implementation of Enhanced Recovery After Surgery: A Delphi Study.

BACKGROUND: Enhanced Recovery After Surgery (ERAS) is widely accepted in current surgical practice due to its positive impact on patient outcomes. The successful implementation of ERAS is challenging and compliance with protocols varies widely. Continual staff education is essential for successful ERAS programmes. Teaching modalities exist, but there remains no agreement regarding the optimal training curriculum or how its effectiveness is assessed. We aimed to draw consensus from an expert panel regarding the successful training and implementation of ERAS. METHODS: A modified Delphi technique was used; three rounds of questionnaires were sent to 58 selected international experts from 11 countries across multiple ERAS specialities and multidisciplinary teams (MDT) between January 2016 and February 2017. We interrogated opinion regarding four topics: (1) the components of a training curriculum and the structure of training courses; (2) the optimal framework for successful implementation and audit of ERAS including a guide for data collection; (3) a framework to assess the effectiveness of training; (4) criteria to define ERAS training centres of excellence. RESULTS: An ERAS training course must cover the evidence-based principles of ERAS with team-oriented training. Successful implementation requires strong leadership, an ERAS facilitator and an effective MDT. Effectiveness of training can be measured by improved compliance. A training centre of excellence should show a willingness to teach and demonstrable team working. CONCLUSIONS: We propose an international expert consensus providing an ERAS training curriculum, a framework for successful implementation, methods for assessing effectiveness of training and a definition of ERAS training centres of excellence.

Preoperative care of patients undergoing stoma formation: what the nurse needs to know.

Rationale and key points This article addresses preoperative care of patients for whom surgery to form a stoma is planned. It discusses conditions that may result in the formation of a stoma, explores preoperative investigations that may be necessary before surgery, outlines various types of stoma and stoma appliances, and offers guidance on preparing patients to manage this lifestyle transition. The stoma specialist nurse has the principal role in providing patient education. However, nurses in all practice settings may encounter patients who are due to undergo surgery to form a stoma, and can provide preoperative support and education. ¼ Nurses require an understanding of the enhanced recovery pathway to support patients who are due to undergo surgery to form a stoma. ¼ Optimal siting of the stoma is essential to enable patient self-care. ¼ Effective preoperative care of patients undergoing planned surgery to form a stoma enables patients to gain independence quickly following stoma formation. ¼ Enabling patients to self-care for their stoma is associated with improved quality of life and enhanced body image.

Preoperative carbohydrate loading in the enhanced recovery pathway.

The enhanced recovery pathway is an evidence-based surgical care pathway that includes preoperative, perioperative and postoperative care and results in fewer complications and a shorter length of stay in hospital. There are a variety of elements associated with this pathway and one is the use of a preoperative carbohydrate-loading drink. The consumption of this drink, which is specifically designed to be safely consumed a few hours before surgery, is discussed with a review of the literature on the topic.

Active and passive compliance in an enhanced recovery programme.

INTRODUCTION: Enhanced recovery after surgery (ERAS) is a well-established and accepted practice following colorectal surgery and has been demonstrated to reduce hospital length of stay (LOS) and 30-day morbidity. Despite evidence to support the individual elements on which the programme is based, there remains uncertainty as to how many and which of these are required to realise its benefits. Furthermore, elements of an ERAS programme might either precipitate or reflect recovery, in which case compliance could have a role in the improvement or prediction of outcome. MATERIALS AND METHODS: A multidimensional prospective database of 799 consecutive patients undergoing colorectal surgery within an established ERAS programme at a single institution was interrogated. After application of exclusion criteria, 614 patients were studied. The novel concept of 'active compliance' is introduced. An ERAS element is classified as 'active' if the participation of the patient is required to achieve its compliance. This contrasts with 'passive' compliance, where an intervention is delivered to the patient without their direct contribution. The short-term surgical outcomes of this cohort are reported with reference to ERAS protocol compliance. RESULTS: Compliance with the passive elements of the programme was higher than with the active elements. Univariate and multivariate analyses demonstrate that poor compliance with active but not passive elements of the programme was significantly associated with major morbidity. Receiver operator characteristic curve analysis demonstrated active compliance to be a stronger predictor of both major morbidity (AUC 0.71 vs. AUC 0.56) and length of stay (AUC 0.83 vs. 0.57) when compared with passive compliance. CONCLUSION: The results suggest that poor active compliance may be a surrogate marker of morbidity which can be recognised in the early post-operative period. This implies the potential for timely diagnosis and intervention. This aspect of ERAS compliance is clinically relevant yet has achieved scant attention. Independent validation of our observations is required.

Care of patients with peristomal skin complications.

Stoma formation is common and may be necessary in the management of certain diseases and as a result of surgery to the gastrointestinal tract or urinary tract. Because stomas provide an alternative route for the excretion of faeces and urine, they can have a significant effect on the individual's physical, psychological and social functioning. Stomas require careful management and patients need to be taught how to self-care for the stoma and how to recognise common complications. This article focuses on the signs, symptoms and management of peristomal skin complications.