The development of a faecal incontinence core outcome set: an international Delphi study protocol.

PURPOSE: Faecal incontinence (FI) is estimated to affect around 7.7% of people. There is a lack of uniformity in outcome definitions, measurement and reporting in FI studies. Until now, there is no general consensus on which outcomes should be assessed and reported in FI research. This complicates comparison between studies and evidence synthesis, potentially leading to recommendations not evidence-based enough to guide physicians in selecting an FI therapy. A solution for this lack of uniformity in reporting of outcomes is the development of a Core Outcome Set (COS) for FI. This paper describes the protocol for the development of a European COS for FI. METHODS: Patient interviews and a systematic review of the literature will be performed to identify patient-, physician- and researcher-oriented outcomes. The outcomes will be categorised using the COMET taxonomy and put forward to a group of patients, physicians (i.e. colorectal surgeons, gastroenterologists and general practitioners) and researchers in a Delphi consensus exercise. This exercise will consist of up to three web-based rounds in which participants will prioritise and condense the list of outcomes, which is expected to result in consensus. A consensus meeting with participants from all stakeholder groups will take place to reach a final agreement on the COS. DISCUSSION: This study protocol describes the development of a European COS to improve reliability and consistency of outcome reporting in FI studies, thereby improving evidence synthesis and patient care. TRIAL REGISTRATION: This project has been registered in the COMET database on the 1st of April 2020, available at http://www.comet-initiative.org/Studies/Details/1554 . The systematic review has been registered on the PROSPERO database on the 31st of August 2020, available at https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=202020&VersionID=1381336 .

The social, psychological, emotional morbidity and adjustment techniques for women with anal incontinence following Obstetric Anal Sphincter Injury: use of a word picture to identify a hidden syndrome.

BACKGROUND: To identify the emotional, social and psychological consequences and recovery process of anal incontinence (AI) following obstetric anal sphincter injuries (OASIS) and explore if this can be identified as a recognisable syndrome with visual representation. METHODS: A qualitative approach was adopted for this study. Data derived from case studies (n = 81) and interviews (n = 14) with women with AI after OASIS was used to identify the emotional, social and psychological consequences of AI after OASIS. Keywords and synonyms were extracted and the power of these statements displayed as a 'word picture'. The validity and authenticity of the word picture was then assessed by: a questionnaire sent to a group of mothers who had experienced this condition (n = 16); a focus group attended by mothers (n = 14) and supported by health professionals (n = 6) and via interviews with health professionals (n = 12) who were involved with helping mothers with AI following OASIS. RESULTS: Women with AI resulting from OASIS have a specific syndrome - the 'OASIS Syndrome' - which we have uniquely visualised as a 'word picture'. They feel unclean which results in dignity loss, psychosexual morbidity, isolation, embarrassment, guilt, fear, grief, feeling low, anxiety, loss of confidence, a feeling of having been mutilated and a compromised role as a mother. Coping relies on repetitive washing (which may become a ritual), planning daily activities around toiletry needs, sharing, family support, employment if possible and attention to the baby. Recovery and healing is through care of the child and hope generated by love within the family. CONCLUSIONS: This study has identified a previously unrecognised 'OASIS Syndrome' and, by way of a new and unique 'word picture', revealed a hidden condition. There should be greater awareness by the public and profession about the 'OASIS Syndrome' and a mechanism for early identification of the condition and referral for management. This, if successful, would overcome the barrier of silence which surrounds this currently unspoken taboo.

Tied to the toilet: lived experiences of altered bowel function (anterior resection syndrome) after temporary stoma reversal.

PURPOSE: The purpose of this study was to explore the lived experiences of patients with anterior resection syndrome, defined as altered bowel function as a consequence of rectal cancer treatment. Interviews were completed 4 to 6 weeks post-temporary stoma reversal. SUBJECTS AND SETTING: Eight rectal cancer patients, who had completed their primary treatment, and were now up to 6 weeks poststoma closure and reported altered bowel function, were recruited. The sample was drawn from St. Mark's Hospital, which is an NHS Trust situated in Greater London, England. METHODS: Data were collected via semistructured in-depth interviews. A Husserlian phenomenological approach was used in order to explore the lived experiences of respondents. Interviews were transcribed and analyzed using framework analysis. RESULTS: Participants reported significant alteration in bowel function following stoma reversal that impacted or dictated daily routines. A lack of certainty over when and how bowel movements occurred caused distress and feelings of vulnerability. Consequently respondents stated they often felt as if they were tied to the toilet. Coping strategies included conservative measures such as the use of prescribed drugs, dietary modification, and incontinence pads. These strategies did not always prove effective and most individuals perceived they were not self-managing their symptoms satisfactorily. CONCLUSIONS: Rectal cancer patients should be made aware of the potential for altered bowel function post stoma closure and encouraged to report bothersome bowel elimination symptoms. Treatment should promote a proactive strategy to reduce distress and the risk of symptom chronicity.

Guideline for the diagnosis and treatment of Faecal Incontinence-A UEG/ESCP/ESNM/ESPCG collaboration.

INTRODUCTION: The goal of this project was to create an up-to-date joint European clinical practice guideline for the diagnosis and treatment of faecal incontinence (FI), using the best available evidence. These guidelines are intended to help guide all medical professionals treating adult patients with FI (e.g., general practitioners, surgeons, gastroenterologists, other healthcare workers) and any patients who are interested in information regarding the diagnosis and management of FI. METHODS: These guidelines have been created in cooperation with members from the United European Gastroenterology (UEG), European Society of Coloproctology (ESCP), European Society of Neurogastroenterology and Motility (ESNM) and the European Society for Primary Care Gastroenterology (ESPCG). These members made up the guideline development group (GDG). Additionally, a patient advisory board (PAB) was created to reflect and comment on the draft guidelines from a patient perspective. Relevant review questions were established by the GDG along with a set of outcomes most important for decision making. A systematic literature search was performed using these review questions and outcomes as a framework. For each predefined review question, the study or studies with the highest level of study design were included. If evidence of a higher-level study design was available, no lower level of evidence was sought or included. Data from the studies were extracted by two reviewers for each predefined important outcome within each review question. Where possible, forest plots were created. After summarising the results for each review question, a systematic quality assessment using the GRADE (Grading of Recommendations, Assessment, Development and Evaluations) approach was performed. For each review question, we assessed the quality of evidence for every predetermined important outcome. After evidence review and quality assessment were completed, recommendations could be formulated. The wording used for each recommendation was dependent on the level of quality of evidence. Lower levels of evidence resulted in weaker recommendations and higher levels of evidence resulted in stronger recommendations. Recommendations were discussed within the GDG to reach consensus. RESULTS: These guidelines contain 45 recommendations on the classification, diagnosis and management of FI in adult patients. CONCLUSION: These multidisciplinary European guidelines provide an up-to-date comprehensive evidence-based framework with recommendations on the diagnosis and management of adult patients who suffer from FI.

Managing a colostomy or ileostomy in community nursing practice.

After stoma formation the patient should be independent with their own stoma care. However, with emphasis being placed on community nurses for ongoing aftercare of ostomates: Skingley (2004) has asserted that many community nurses did not feel confident undertaking stoma care. This article is ideally placed for the community nurses to obtain a broad overview of some of the key points pertaining to stoma care. The article looks at care of ostomates and ileostomates in relation to available appliances and also discusses dietary recommendations.