Grieving multiple losses: Experiences of intimacy and sexuality of people living with inflammatory bowel disease. A phenomenological study.

AIM: To explore patient experiences of intimacy and sexuality in those living with inflammatory bowel disease. DESIGN: An interpretative phenomenological study guided by van Manen's framework. Thematic analysis was conducted through interpretation and reflection on four existential domains: body, relationships, time and space. METHODS: Data were collected during 2019-2021 from 43 participants via face-to-face or telephone interviews, as well as anonymous collection of narratives submitted via Google Forms. RESULTS: Four themes were identified: Sexuality as lived incompleteness was the overarching theme representing the essence of the experiences of intimacy and sexuality. This theme covered the four main themes: Otherness of the body, Interrupted connectedness, Missing out on life fullness and Fragmented openness and each corresponded to an existential domain. Intimacy and sexuality are negatively affected by inflammatory bowel disease, with impact on quality of life. Patients experienced grieving multiple losses, from body image and control, to choice of partners and future opportunities. The four domains were difficult to separate and a close inter-relationship between each domain was acknowledged. CONCLUSIONS: A model was developed to draw new theoretical insights to understanding the relationship between sexual well-being and psycho-emotional distress similar to grief. IMPACT: First qualitative study to explore intimacy and sexuality experiences of those living with inflammatory bowel disease. Illness impact on sexuality has negative psycho-emotional implications as a result of losing the old self and capacity to have the desired relationships/sex life. A theoretical model was developed in an attempt to illustrate the close relationship of intimacy, sexuality and psycho-emotional well-being. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in the study design.

How Should Pain, Fatigue, and Emotional Wellness Be Incorporated Into Treatment Goals for Optimal Management of Inflammatory Bowel Disease?

Early diagnosis and the optimal control of inflammation, with a continuous cycle of assessment, treatment, monitoring, and adjustment of therapy, is best practice for the management of inflammatory bowel disease. However, patients express frustration with ongoing challenging symptoms, often discordant with inflammation, including abdominal pain, fatigue, depression, anxiety, and emotional wellness; these are often not optimally addressed by inflammatory bowel disease clinicians due to lack of time or resources. This review will highlight the burden of these symptoms and issues, suggest ways of assessing these in clinical practice, highlight the importance of acknowledging and validating the symptoms and issues with patients, reassuring them that they are being heard, and discuss different possible models of service delivery for psychosocial support, from fully integrated gastropsychology models to referral pathways that optimize community support. We suggest the importance of the treat-to-target concept, where the target is not only control of inflammation but also emotional wellness.

'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.

Habit training versus habit training with direct visual biofeedback in adults with chronic constipation: A randomized controlled trial.

AIM: The aim was to determine whether specialist-led habit training using Habit Training with Biofeedback (HTBF) is more effective than specialist-led habit training alone (HT) for chronic constipation and whether outcomes of interventions are improved by stratification to HTBF or HT based on diagnosis (functional defaecation disorder vs. no functional defaecation disorder) by radio-physiological investigations (INVEST). METHOD: This was a parallel three-arm randomized single-blinded controlled trial, permitting two randomized comparisons: HTBF versus HT alone; INVEST- versus no-INVEST-guided intervention. The inclusion criteria were age 18-70 years; attending specialist hospitals in England; self-reported constipation for >6 months; refractory to basic treatment. The main exclusions were secondary constipation and previous experience of the trial interventions. The primary outcome was the mean change in Patient Assessment of Constipation Quality of Life score at 6 months on intention to treat. The secondary outcomes were validated disease-specific and psychological questionnaires and cost-effectiveness (based on EQ-5D-5L). RESULTS: In all, 182 patients were randomized 3:3:2 (target 384): HT n = 68; HTBF n = 68; INVEST-guided treatment n = 46. All interventions had similar reductions (improvement) in the primary outcome at 6 months (approximately -0.8 points of a 4-point scale) with no statistically significant difference between HT and HTBF (-0.03 points; 95% CI -0.33 to 0.27; P = 0.85) or INVEST versus no-INVEST (0.22; -0.11 to 0.55; P = 0.19). Secondary outcomes showed a benefit for all interventions with no evidence of greater cost-effectiveness of HTBF or INVEST compared with HT. CONCLUSION: The results of the study at 6 months were inconclusive. However, with the caveat of under-recruitment and further attrition at 6 months, a simple, cheaper approach to intervention may be as clinically effective and more cost-effective than more complex and invasive approaches.

A systematic review of the impact of inflammatory bowel disease (IBD) on family members.

BACKGROUND AND AIMS: Inflammatory Bowel Disease (IBD) affects patients and their family members, but most reviews have focused only on patients themselves. This review synthesises evidence on the impact of IBD on family members. METHODS: A systematic review was undertaken, searching six bibliographic databases, focusing on the impact of IBD on family members, coping strategies, and interventions. A narrative synthesis was conducted. This review was reported following the Preferred Reporting Items for Systematic Reviews (PRISMA). RESULTS: 3258 records were identified; 33 papers (2748 participants) were included. Three themes were identified: impact of IBD on family members; coping strategies for family members to overcome the impact of IBD; and the support needed by family members. IBD affects family members' well-being in many ways, including their emotional well-being, relationship with the patient, social life, work and finances, and leisure time and travel. Family members use adaptive coping patterns such as acceptance, developing resilience, and emotional support from others. Maladaptive coping patterns such as denial of diagnosis, self-distraction, and self-blame were also evident. Family members reported that they needed better information about IBD, support groups, and better access to a counsellor or psychologist. No studies assessed interventions to relieve family members' burden. CONCLUSIONS: Family members of IBD patients require psychosocial support to facilitate better family function, cohesion, and enhanced coping strategies. Healthcare services should adopt a multidisciplinary care model with a bio-psycho-social approach including an IBD nurse, family therapist, and psychologist, to improve quality of life for patients and their families.

Supported Intervention Versus Intervention Alone for Management of Fecal Incontinence in Patients With Inflammatory Bowel Disease: A Multicenter Mixed-Methods Randomized Controlled Trial.

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.

Developing an Online Program for Self-Management of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Patients' Needs and Wants.

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.

What Do Orthopaedists Believe is Needed for Incorporating Patient-reported Outcome Measures into Clinical Care? A Qualitative Study.

BACKGROUND: Patient-reported outcome measures (PROMs) are increasingly promoted for use in routine orthopaedic care with the expectation that if they are made available during encounters, they will be incorporated into clinical practice. We investigated an initiative in which PROMs were systematically collected and provided via the electronic health record but were infrequently used. QUESTIONS/PURPOSES: In a qualitative study, we asked: (1) Why are PROM results not being used in clinical care when they are available to surgeons? (2) What aspects of PROMs are seen as useful for clinical care? (3) How are PROMs generally perceived by surgeons and orthopaedic leaders? METHODS: A cross-sectional qualitative study was conducted in a single health system in an urban setting using semistructured interviews with a purposive sample of orthopaedic surgeons and leaders who would have substantial knowledge of and experience with the organization's PROM system, which was embedded in the electronic health record and developed for use in clinical care but was not being used. We included surgeons whose practices consisted of at least 90% patients with osteoarthritis, including surgical and nonsurgical management, and thus their patients would be completing PROMs surveys, or surgeons who were leaders in one of the three orthopaedic divisions in the health plan. The senior research manager for orthopaedics identified 14 potential participants meeting these criteria, 11 of whom agreed to study participation. Participants included nine surgeons and two orthopaedic leaders; the majority were men, with a median of 13 years of clinical practice. Study interviews were conducted by an experienced interviewer not known to participants, in private conference rooms in the healthcare setting, and a median (range) of 27 minutes (16 to 40) in length. A content analysis approach was employed for data analysis, with thematic inductive saturation reached in the analysis and attention to trustworthiness and rigor during the analytic process. RESULTS: Interviewees reported that PROM scores are not being used in patient clinical care because of logistical barriers, such as access and display issues and the time required, and perceptual barriers, such as concerns about patient understanding and the validity and reliability of measures. Surgeons preferred talking with patients about the personal outcomes patients had identified as important; most patients preferred to assess progress toward their own goals than PROMs scores for other people. Surgeons also identified changes that could facilitate PROM use and reduce barriers in clinical care, including pushing PROM scores to physicians' inboxes, developing inserts for physician notes, using easy-to-understand graphical displays, and engaging patients about PROMs earlier in the care process. Participants all agreed that PROMs in aggregate use are valuable for the organization, department, and individual surgeons, but individual patient scores are not. CONCLUSION: Despite the availability of PROMs, there are important barriers to incorporating and using PROMs in clinical care. Providing access to PROM scores without clearly understanding how and why surgeons may consider using or incorporating them into their clinical practice can result in expensive and underused systems that add little value for the clinician, patient, or organization. CLINICAL RELEVANCE: Involving front-line orthopaedic surgeons and leaders in shaping the design and structure of PROM systems is important for use in clinical care, but these interviewees seemed to see aggregate data as more valuable than individual patient scores.

Is Shared Decision-making Associated with Better Patient-reported Outcomes? A Longitudinal Study of Patients Undergoing Total Joint Arthroplasty.

BACKGROUND: Although shared decision-making (SDM) has knowledge and satisfaction benefits for patients and is promising, we lack data demonstrating that SDM is associated with better patient-reported functional outcomes. Such data would support the integration and prioritization of SDM into all aspects of orthopaedic care. QUESTIONS/PURPOSES: (1) Is a measure of SDM before total joint arthroplasty associated with better patient-reported outcome measures (PROMs) 1 year postoperatively? (2) What is the relationship between the measure of SDM and two measures of patient experience (patient rating of the provider and patient likelihood of recommending the provider) at 1 year postoperatively? METHODS: In this observational longitudinal survey-based study, patients receiving an initial THA or TKA from a large, multispecialty medical group in the Midwestern United States were surveyed after they were scheduled for surgery and again at 12 months after their procedure. The three-item collaboRATE measure of SDM was added to existing patient surveys of PROMs. However, the surgeons and their department had no organized approach to SDM during this time. The surveys also included the Oxford knee or hip score and two validated measures of patient experience (patient rating of the provider and whether a patient would recommend the provider). Of the 2779 eligible primary joint arthroplasties that occurred from April 23, 2018 to May 1, 2019, 48% (1334 procedures; 859 TKAs and 485 THAs) of the patients responded to both the preoperative and 12-month postoperative surveys. Most of the patients who were included in the analytic sample were white (93%; 1255 of 1344), with only 3% (37) using Medicaid benefits at the time of surgery. Differences between responders and nonresponders were present and explored in an analysis. Patient responses were analyzed in regression models to estimate the association between preoperative collaboRATE scores and the Oxford knee or hip scores, and patient experience measures 12 months postoperatively. RESULTS: There was a moderate, positive association between preoperative collaboRATE scores and the Oxford scores at 12 months, after adjustment for potential confounders such as patient age and preoperative functional score (ß = 0.58; 95% CI 0.14-1.02; p = 0.01). Similarly, patients with preoperative collaboRATE scores had marginally higher patient experience scores at 12 months postoperatively (ß = 0.14; 95% CI 0.05-0.24; p = 0.003) and were more likely to recommend their surgeon (OR 1.43; 95% CI 1.11-1.84; p = 0.005). The patient experience measures were also modestly correlated with collaboRATE scores in cross-sectional associations, both preoperatively and at 12 months postoperatively (0.29 ≤ r ≤ 0.54; p < 0.01). CONCLUSION: The association between preoperative collaboRATE scores and Oxford hip or knee scores suggests that SDM could be one tool to encourage better outcomes. Although previous studies have shown that SDM can improve patient experience, the lack of a strong correlation in our study suggests that PROMs and experience measures are separate domains, at least partly. Improving preoperative SDM between the surgeon and patient might help improve surgical outcomes for patients undergoing TKA and THA. LEVEL OF EVIDENCE: Level II, therapeutic study.

Independent nurse medication provision: A mixed method study assessing impact on patients' experience, processes, and costs in sexual health clinics.

BACKGROUND: Local services in the United Kingdom National Health Service enable autonomous provision of medication by nurses, supporting individual nurses to gain prescribing qualifications or by introducing local patient group directions. AIM: To compare nurse prescribing and patient group directions about clinic processes, patients' experiences, and costs from the perspectives of providers, nurses, and patients. DESIGN: Mixed methods, comparative case study in five urban sexual health services in the United Kingdom. METHODS: Data were collected from nurse prescribers, patient group direction users and their patients July 2015 to December 2016. Nurse questionnaires explored training (funding and methods). Nurses recorded consultation durations and support from other professionals in clinical diaries. Patient notes were reviewed to explore medication provision, appropriateness and safety; errors were judged by an expert panel. Patients completed satisfaction questionnaires about consultations and information about medications. RESULTS: Twenty-eight nurse prescribers and 67 patient group directions users took part; records of 1682 consultations were reviewed, with 1357 medications prescribed and 98.5% therapeutically appropriate. Most medication decisions were deemed safe (96.0% nurse prescribers, 98.7% patient group directions, Fisher's Exact Test p = .55). Errors were predominantly minor (55.6% nurse prescribers, 62.4% patient group directions) and related to documentation omissions (78.0%); no patients were harmed. Consultation durations and unplanned re-consultations were similar for both groups. Nurse prescribers sought assistance from colleagues less frequently (chi-squared = 46.748, df = 1, p < .001) but spent longer discussing cases. Nurse prescribing training required more resources from providers and nurses, compared with patient group directions. Nurse prescribers were on higher salary bands. Patient satisfaction was high in both groups (>96%). CONCLUSIONS: Nurse medication provision by both nurse prescribers and patient group direction users is safe and associated with high patient satisfaction; effects on clinic processes and costs are similar. Undertaking the prescribing qualification involves independent study but may bring longer-term career progression to nurses.

Patient satisfaction with medication consultations and medicines information provided by nurses working autonomously in sexual health services: A questionnaire study.

AIM: To compare the satisfaction of patients managed by independent nurse prescribers with that of patients managed by nurses using PGDs with respect to experience of the consultation and information received about the medication. DESIGN: Survey. METHODS: Patients receiving medications from nurses in five urban sexual health services in the United Kingdom completed validated questionnaires immediately after the consultation, September 2015-August 2016. Scores of independent nurse prescribers and nurses using patient group directions were compared about consultation experience (5 items) Satisfaction with Information about Medicines (SIMS 16 items scale). RESULTS: Of 808 patients receiving medications, 393 (48.6%) received questionnaires and 380 were returned (independent nurse prescribers 180 of 198, 90.9%; patient group directions 173 of 195, 88.7%). Patients in both groups reported high levels of satisfaction. About the consultation experience, patients found nurses friendly/ approachable (>99%), instilling confidence and trust (>99%) and explaining reasons for medications clearly (97%). Satisfaction with medication information: Of 348 (92%) respondents completing SIMS, the overall mean score was 13.4 of maximum 16 (no difference between groups, t-test, p = .63). CONCLUSIONS: Patients were highly satisfied with nurse consultations and information around medications regardless of whether they were managed by independent nurse prescribers or nurses using patient group directions. IMPACT: Findings provide evidence in support of autonomous provision of medications by nurses in sexual health clinics.

Development and initial psychometric validation of a patient-reported outcome measure for Crohn's perianal fistula: the Crohn's Anal Fistula Quality of Life (CAF-QoL) scale.

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.

A Systematic Review: Dietary Habits of Women with Gynecological Cancer before, during and after Treatment.

INTRODUCTION: Cancer treatment can affect eating habits and some patients treated with pelvic radiotherapy develop chronic changes in their bowel function which may impact on dietary intake. This systematic review summarizes current research on dietary habits before, during and after treatment in women with a gynecological malignancy. METHODS: MEDLINE, EMBASE, CINAHL and PubMed databases were searched until August 1, 2019, with no language restrictions. PRISMA guidelines for systematic reviews were used to ensure transparent and complete reporting (Liberati et al., 2009). Quantitative studies exploring dietary habits before, during or after treatment for gynecological cancer were included. RESULTS: Three prospective cohort studies (98 participants) were included. All patients were treated with radiotherapy; some also had surgery and chemotherapy. Studies reported similar changes in weight, BMI and energy intake and found that patients lose weight during treatment, but this was not long-lasting. Long-term results suggest that fat and protein intake increase significantly (p < 0.01). There was no correlation of symptoms with any nutritional parameters. CONCLUSION: Evidence from three studies suggests further studies including long-term assessment of dietary intake in women treated for a gynecological malignancy are warranted to explore the impact of cancer treatments on dietary intake and its relation to developing long-term gastrointestinal toxicity.

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

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.

Clinician Administered and Self-Report Survey Both Effective for Identifying Fecal Incontinence in Patients with Inflammatory Bowel Disease.

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.

The importance of living well now and relationships: A qualitative study of the barriers and enablers to engaging frail elders with advance care planning.

BACKGROUND: The population of frail elders is growing, and due to their vulnerability to sudden deterioration, advance care planning is particularly important. However, advance care planning is uncommon for multiple reasons, some of which are linked to the perceptions of frail elders and their families. AIM: To explore the barriers and enablers to advance care planning engagement with frail elders. DESIGN: Qualitative in-depth interviews with thematic analysis. SETTING/PARTICIPANTS: Purposive sample of 10 frail elders and 8 nominated family members using a community-based older persons' service run by a large urban UK hospice. Frail elders had capacity, were ⩾65 (median 85, range 71-95), scored 6 or 7 (median 6.5) on the Clinical Frailty Scale, and 70% were female. RESULTS: Key barriers were: Advance care planning is unclear, in terms of meaning and the language used; Lack of relevance, with frail elders preferring to focus on living well now; and the Importance of family, relationships and home, and the influence of relationship on end of life decision-making. Engagement strategies included preparing the frail elder for advance care planning conversations and using a gentle, honest, individualised approach. CONCLUSIONS: Essential enablers for frail elders are understanding what advance care planning is and why it may be relevant to them. For professionals, enablers include recognising the importance of living well now and relational decision-making. To further support advance care planning, recommendations include early engagement and re-conceptualising advance care planning as an ongoing process which encompasses current and future care. Further research is needed in different cultures and care contexts.

Constipation in Hospitalized Patients: A Study of Prevalence and Associated Factors.

PURPOSE: The purpose of this study was to identify the prevalence of constipation in hospitalized patients, along with sociodemographic and clinical variables associated with its occurrence. DESIGN: Observational, cross-sectional study. SUBJECTS AND SETTINGS: The study sample comprised 343 adult patients hospitalized at a University Hospital in Sao Paulo, Brazil. METHODS: Point-prevalence data were collected on the same day each month over a 4-month period. Data were collected via interviews, physical examination, medical record review, and completion of a data collection form that queried sociodemographic data and incorporated the Bowel Function in the Community instrument. Patients were classified as constipated if they met 2 or more of the Rome III criteria. Logistic regression analyses were used to identify clinical or sociodemographic factors associated with constipation. RESULTS: Fifty-one patients had constipation, reflecting a point-prevalence of 14.8% (95% CI, 11.49-19.02). The prevalence of constipation was 15% in females (n = 29) and 14.7% in males (n = 22). Multivariable logistic regression showed that use of laxatives (OR = 9.98; 95% CI, 3.539-29.666) was associated with a higher likelihood of constipation. CONCLUSION: The prevalence of constipation in hospitalized adult patients was lower than that in previous studies. Patients using laxatives were more likely to experience constipation.

Burden of disease and adaptation to life in patients with Crohn's perianal fistula: a qualitative exploration.

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.

A proposed tailored investigational algorithm for women treated for gynaecological cancer with long-term gastrointestinal consequences.

BACKGROUND AND AIM: Long-term changes in gastrointestinal function impacting quality of life after treatment for cancer are common. Peer reviewed guidance to investigate and manage GI dysfunction following cancer treatment has been published. This study reviewed gastrointestinal symptoms of women previously treated for gynaecological cancer and considered whether suggested algorithms could be amended to optimise management for this cohort. METHODS: Demographic and clinical data recorded for patients attending a specialist consequences of cancer treatment gastroenterology service prospectively are reported using median and range. The Wilcoxon signed rank test analysed changes in symptoms between initial assessment to discharge from the service. RESULTS: Between April 2013 and March 2016, 220 women, with a median age of 57 years (range 24-83 years), treated for gynaecological cancer (cervical (50%)), endometrial (28%), ovarian (15%), vaginal or vulval (7%) attended. Twelve gastrointestinal symptoms were statistically significantly reduced by time of discharge from the specialist gastroenterology clinic including bowel frequency ≥ 4/day (88%), type 6 or 7 stool consistency (36%), urgency (31%) and incontinence (21%). General quality of life improved from a median score of 4 at first assessment to a median of 6 at discharge (p < 0.001). A median of four (range, 1-9) diagnoses were made. CONCLUSION: Women with gastrointestinal symptoms after cancer treatment benefit from a systematic management approach. After excluding disease recurrence, a proposed investigational algorithm and the oncology team includes FBC, U&Es, LFTs, thyroid function test, vitamin B12, vitamin D, a hydrogen methane breath test and a SeHCAT scan. If rectal bleeding is present, iron studies, flexible sigmoidoscopy or colonoscopy should be performed. Patients with normal investigations or symptoms not responding to treatment require gastroenterology input.

Interventions for fatigue in inflammatory bowel disease.

BACKGROUND: Inflammatory bowel disease (IBD) is an umbrella term used to describe a group of chronic, progressive inflammatory disorders of the digestive tract. Crohn's disease and ulcerative colitis are the two main types. Fatigue is a common, debilitating and burdensome symptom experienced by individuals with IBD. The subjective, complex nature of fatigue can often hamper its management. The efficacy and safety of pharmacological or non-pharmacological treatments for fatigue in IBD is not yet established through systematic review of studies. OBJECTIVES: To assess the efficacy and safety of pharmacological and non-pharmacological interventions for managing fatigue in IBD compared to no treatment, placebo or active comparator. SEARCH METHODS: A systematic search of the databases Embase, MEDLINE, Cochrane Library, CINAHL, PsycINFO was undertaken from inception to July 2018. A top-up search was run in October 2019. We also searched the Cochrane IBD Group Specialized Register, the Cochrane Central Register of Controlled Trials, ongoing trials and research registers, conference abstracts and reference lists for potentially eligible studies. SELECTION CRITERIA: Randomised controlled trials of pharmacological and non-pharmacological interventions in children or adults with IBD, where fatigue was assessed as a primary or secondary outcome using a generic or disease-specific fatigue measure, a subscale of a larger quality of life scale or as a single-item measure, were included. DATA COLLECTION AND ANALYSIS: Two authors independently screened search results and four authors extracted and assessed bias independently using the Cochrane 'Risk of bias' tool. The primary outcome was fatigue and the secondary outcomes included quality of life, adverse events (AEs), serious AEs and withdrawal due to AEs. Standard methodological procedures were used. MAIN RESULTS: We included 14 studies (3741 participants): nine trials of pharmacological interventions and five trials of non-pharmacological interventions. Thirty ongoing studies were identified, and five studies are awaiting classification. Data on fatigue were available from nine trials (1344 participants). In only four trials was managing fatigue the primary intention of the intervention (electroacupuncture, physical activity advice, cognitive behavioural therapy and solution-focused therapy). Electroacupuncture Fatigue was measured with Functional Assessment of Chronic Illness Therapy - Fatigue (FACIT-F) (scores range from 0 to 52). The FACIT-F score at week eight was 8.00 points higher (better) in participants receiving electroacupuncture compared with no treatment (mean difference (MD) 8.00, 95% CI 6.45 to 9.55; 1 RCT; 27 participants; low-certainty evidence). Results at week 16 could not be calculated. FACIT-F scores were also higher with electroacupuncture compared to sham electroacupuncture at week eight (MD 5.10, 95% CI 3.49 to 6.71; 1 RCT; 30 participants; low-certainty evidence) but not at week 16 (MD 2.60, 95% CI 0.74 to 4.46; 1 RCT; 30 participants; low-certainty evidence). No adverse events were reported, except for one adverse event in the sham electroacupuncture group. Cognitive behavioural therapy (CBT) and solution-focused therapy Compared with a fatigue information leaflet, the effects of CBT on fatigue are very uncertain (Inflammatory Bowel Disease-Fatigue (IBD-F) section I: MD -2.16, 95% CI -6.13 to 1.81; IBD-F section II: MD -21.62, 95% CI -45.02 to 1.78; 1 RCT, 18 participants, very low-certainty evidence). The efficacy of solution-focused therapy on fatigue is also very uncertain, because standard summary data were not reported (1 RCT, 98 participants). Physical activity advice One 2 x 2 factorial trial (45 participants) found physical activity advice may reduce fatigue but the evidence is very uncertain. At week 12, compared to a control group receiving no physical activity advice plus omega 3 capsules, FACIT-F scores were higher (better) in the physical activity advice plus omega 3 group (FACIT-F MD 6.40, 95% CI -1.80 to 14.60, very low-certainty evidence) and the physical activity advice plus placebo group (FACIT-F MD 9.00, 95% CI 1.64 to 16.36, very low-certainty evidence). Adverse events were predominantly gastrointestinal and similar across physical activity groups, although more adverse events were reported in the no physical activity advice plus omega 3 group. Pharmacological interventions Compared with placebo, adalimumab 40 mg, administered every other week ('eow') (only for those known to respond to adalimumab induction therapy), may reduce fatigue in patients with moderately-to-severely active Crohn's disease, but the evidence is very uncertain (FACIT-F MD 4.30, 95% CI 1.75 to 6.85; very low-certainty evidence). The adalimumab 40 mg eow group was less likely to experience serious adverse events (OR 0.56, 95% CI 0.33 to 0.96; 521 participants; moderate-certainty evidence) and withdrawal due to adverse events (OR 0.48, 95%CI 0.26 to 0.87; 521 participants; moderate-certainty evidence). Ferric maltol may result in a slight increase in fatigue, with better SF-36 vitality scores reported in the placebo group compared to the treatment group following 12 weeks of treatment (MD -9.31, 95% CI -17.15 to -1.47; 118 participants; low-certainty evidence). There may be little or no difference in adverse events (OR 0.55, 95% CI 0.26 to 1.18; 120 participants; low-certainty evidence) AUTHORS' CONCLUSIONS: The effects of interventions for the management of fatigue in IBD are uncertain. No firm conclusions regarding the efficacy and safety of interventions can be drawn. Further high-quality studies, with a larger number of participants, are required to assess the potential benefits and harms of therapies. Future studies should assess interventions specifically designed for fatigue management, targeted at selected IBD populations, and measure fatigue as the primary outcome.