Chronic abdominal pain in inflammatory bowel disease: a practical guide.

Pain is common in inflammatory bowel disease (IBD), yet many patients feel their pain is not addressed by healthcare professionals. Listening to a patient's concerns about pain, assessing symptoms and acknowledging the impact these have on daily life remain crucial steps in addressing pain in IBD. While acute pain may be effectively controlled by pain medication, chronic pain is more complex and often pharmacological therapies, particularly opioids, are ineffective. Low-dose tricyclic antidepressants and psychological approaches, including cognitive-behavioural therapy, have shown some promise in offering effective pain management while lifestyle changes such as a trial of low-fermentable oligosaccharides, disaccharides, monosaccharides and polyols diet in those with overlapping irritable bowel syndrome may also reduce pain. Patients benefit from a long-term, trusting relationship with their healthcare professional to allow a holistic approach combining pharmacological, psychological, lifestyle and dietary approaches to chronic pain. We present a practical review to facilitate management of chronic abdominal pain in IBD.

Our Life Is a Rollercoaster! A Qualitative Phenomenological Study Exploring the Impact of IBD on Family Members.

BACKGROUND: Inflammatory bowel disease (IBD) significantly impacts patients and their families. To provide support, understanding the effects on the wider family is crucial. However, limited research exists on the impact of IBD on family members of adults diagnosed with IBD. This study addresses this knowledge gap. METHODS: Underpinned by interpretive phenomenology, this study used in-depth, semi-structured online interviews to explore relatives' experiences. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using reflexive thematic analysis. RESULTS: Forty-three purposively selected interviewees comprising 17 people with IBD and 26 family members (parents, children, siblings, and partners) revealed 3 main themes: (1) "life is a rollercoaster," (2) "there have been a lot of bridges to cross along the way," and (3) "my life would be better if…" Participants highlighted that IBD has both positive and negative impacts on family members in terms of emotional well-being, relationship, roles and responsibilities, day-to-day burden, and sibling suffering. Some employed adaptive coping strategies such as creating social networks and open communication, while others relied on maladaptive coping strategies, such as avoidance and alcohol abuse. Family members expressed the need for proactive communication, information, and support from healthcare professionals. CONCLUSIONS: IBD affects the emotional and psychosocial well-being of family members, eliciting both adaptive and maladaptive coping strategies. Healthcare professionals need to adopt a holistic approach to managing IBD that considers the psychosocial and emotional challenges faced by individuals and their families.

Inflammatory bowel disease has a profound impact on the psychosocial and emotional well-being of family members, diminishing their quality of life. Family members seek guidance on coping strategies and interventions to bolster their psychological, social, and emotional well-being.

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.

Is There Room for Individual Patient-Specified Preferences in the Patient-Reported Outcome Measurement Revolution?

Purpose: The study aim was to test the feasibility of collecting qualitative patient-preferred outcomes or goals and the degree of their attainment as an addition to a standardized process for collecting quantitative composite patient-reported outcome measures (PROMs) from patients undergoing knee joint replacement. Methods: Patients of a large Midwestern medical group scheduled to have total replacement of their knee joint have been asked to complete a PROMs survey preoperatively and at 3 and 12 months after surgery since 2014. In March 2020, an open-ended question about their most important preferred outcome was added to the existing questionnaire. The responses for all 3 time periods from the first 6 months of this addition were summarized quantitatively and analyzed by 2 reviewers. Results: During that 6-month period, 1481 people completed the main survey while 1463 (98.8%) also completed the open-ended question. At baseline, 90.8% of the 590 baseline respondents identified a preferred outcome. If multiple-choice categories had been used, 82.7% of the responses would have lost some or a large amount of their preferred goals' meaning. Of the 144 who completed surveys at both baseline and 3 months, 86.1% reported another outcome in addition to pain relief, while 54.2% reported "Complete or Mostly" achieving their self-identified preferred outcome. Conclusions: Most people who have joint replacement surgery and respond to a quantitative PROMs survey are willing to report on their other preferred outcomes as well. Adding an open-ended question to PROMs surveys may increase clinician focus on addressing outcomes important to each patient.

What Do We Know about Medication Adherence Interventions in Inflammatory Bowel Disease, Multiple Sclerosis and Rheumatoid Arthritis? A Scoping Review of Randomised Controlled Trials.

Purpose: Between 53% and 75% of people with inflammatory bowel disease, 30%-80% with rheumatoid arthritis, and up to 50% with multiple sclerosis do not take medications as prescribed to maintain remission. This scoping review aimed to identify effective adherence interventions for inflammatory bowel disease, but with few studies found, multiple sclerosis and rheumatoid arthritis were included to learn lessons from other conditions. Methods: Full and pilot randomised controlled trials testing medication adherence interventions for inflammatory bowel disease, multiple sclerosis, and rheumatoid arthritis conducted between 2012 and 2021 were identified in six electronic databases. Results: A total of 3024 participants were included from 24 randomised controlled trials: 10 pilot and 14 full studies. Eight investigated inflammatory bowel disease, 12 rheumatoid arthritis, and four multiple sclerosis. Nine studies (37.5%) reported significantly improved medication adherence, all involving tailored, personalised education, advice or counselling by trained health professionals, with five delivered face-to-face and 1:1. Quality of effective interventions was mixed: five rated high quality, two medium and two low quality. Interventions predominantly using technology were likely to be most effective. Secondary tools, such as diaries, calendars and advice sheets, were also efficient in increasing adherence. Only 10 interventions were based on an adherence theory, of which four significantly improved adherence. Conclusion: Tailored, face-to-face, 1:1 interactions with healthcare professionals were successful at providing personalised adherence support. Accessible, user-friendly technology-based tools supported by calendars and reminders effectively enhanced adherence. Key components of effective interventions should be evaluated and integrated further into clinical practice if viable, whilst being tailored to inflammatory conditions.

Clinician and patient perspectives on the barriers and facilitators to physical rehabilitation in intensive care: a qualitative interview study.

OBJECTIVES: The objective of this study is to explore patient, relative/carer and clinician perceptions of barriers to early physical rehabilitation in intensive care units (ICUs) within an associated group of hospitals in the UK and how they can be overcome. DESIGN: Qualitative study using semi-structured interviews and thematic framework analysis. SETTING: Four ICUs over three hospital sites in London, UK. PARTICIPANTS: Former ICU patients or their relatives/carers with personal experience of ICU rehabilitation. ICU clinicians, including doctors, nurses, physiotherapists and occupational therapists, involved in the delivery of physical rehabilitation or decisions over its initiation. PRIMARY AND SECONDARY OUTCOMES MEASURES: Views and experiences on the barriers and facilitators to ICU physical rehabilitation. RESULTS: Interviews were carried out with 11 former patients, 3 family members and 16 clinicians. The themes generated related to: safety and physiological concerns, patient participation and engagement, clinician experience and knowledge, teamwork, equipment and environment and risks and benefits of rehabilitation in intensive care. The overarching theme for overcoming barriers was a change in working model from ICU clinicians having separate responsibilities (a multidisciplinary approach) to one where all parties have a shared aim of providing patient-centred ICU physical rehabilitation (an interdisciplinary approach). CONCLUSIONS: The results have revealed barriers that can be modified to improve rehabilitation delivery in an ICU. Interdisciplinary working could overcome many of these barriers to optimise recovery from critical illness.

Knowledge and Attitude of Inflammatory Bowel Disease Patients Toward Colorectal Cancer Risk, Its Management, and the Role of Healthcare Providers: A Cross-Sectional Study in the UK.

Background: Inflammatory bowel disease (IBD) increases the risk for colorectal cancer (CRC). Limited literature exists on patients' knowledge of CRC risk and management. Attitude toward doctor-recommended management and the role of healthcare providers (HCPs) in CRC risk awareness remain unexplored. This study aimed to fill the gap in knowledge about CRC risk awareness and management in IBD patients in the UK. Methods: This cross-sectional internet-based study was conducted in April-July 2019. Adult (>18 years) IBD patients with a confirmed diagnosis for 2 years and adequate command of English language were invited from non-Natinal Health Services sources. A self-designed and piloted questionnaire with open- and closed-ended questions was used. Closed-ended data were analyzed using descriptive statistics and open-ended responses were analyzed using content analysis. Results: Ninety-two participants (52.5% Crohn's disease and 67.5% females) responded. Around 88% knew that IBD increased CRC risk. Only 20.7% were aware of colonoscopy as the best screening tool; 88% were unaware of screening initiation time. Almost 90% would agree to a doctor's recommendation of colonoscopy. For dysplasia with 10% risk of CRC, 46.7% would not agree with colectomy. Some 48% reported to have never had a discussion about the risk of CRC in IBD with their HCPs, while 58% were not informed of the role of screening and surveillance in managing CRC risk. Conclusions: IBD patients were poorly aware of CRC risk management and had mixed willingness to comply with a doctor's recommendation. HCP's role in cancer knowledge dissemination was suboptimal and patients desired more information.

Program evaluation of a wilderness experience for adolescents facing cancer: A time in nature to heal, connect and find strength.

OBJECTIVE: Despite advances in cancer treatment and increased survival, adolescents in treatment for cancer often suffer from psychosocial distress, negative mood, and chronic health problems. Wilderness therapy is considered a promising program to address psychosocial issues among adolescents with mental or behavioral health issues. There is little research on whether it may benefit adolescents in cancer treatment. METHODS: This program evaluation in the form of a pilot study uses qualitative and quantitative measures to describe the feasibility, acceptability, safety, and to explore the impact of a nine-day wilderness program among adolescents aged 13-17 in treatment or who recently finished treatment for a cancer. Quantitative tracking documented recruitment, retention, safety, and participant satisfaction. PROMIS measures assessed mental and social health, positive affect, fatigue, pain interference and intensity over three time-points: pre, post, and three-months after the nine-day wilderness experience. Mean differences were compared over time. Qualitative data collection involved participant observation and open-ended interviews. RESULTS: Study enrollment goals were met, enrolling eight adolescent participants with 100% participant retention. No serious adverse events were reported and participants described high satisfaction (9.25/10) with the wilderness experience on the final day and at three-months follow-up (9.5/10). Exploratory data analysis showed scores in a favorable direction indicating improved psychosocial outcomes in physical functioning, anxiety, depression, fatigue, and peer relations. From qualitative analysis it is suggested that program participation supported: increased self-confidence and peer connection. The program was evaluated as increasing personal accomplishment, supporting social interaction, having strong staff support, and capitalizing on the natural surroundings. CONCLUSION: Use of a wilderness program is feasible, acceptable, and safe among this highly vulnerable adolescent cancer population. Participants described greater self-confidence and peer connection which developed as participants experienced physical competency, group leadership, and personal strength. Larger randomized controlled studies are needed to learn whether these programs can improve psychosocial outcomes.

"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.

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.

Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol.

Introduction: Most patients with Adrenal insufficiency (AI) require lifelong glucocorticoid replacement. They need to increase glucocorticoids during physical illness or major stressful situations and require parenteral hydrocortisone in the event of an adrenal crisis. Patients with AI have impaired quality of life and high mortality; approximately 1 in 6-12 patients are hospitalised at least once/year from a potentially preventable adrenal crisis. Adoption of self-management behaviours are crucial; these include adherence to medication, following "sick day rules" and associated behaviours that aid prevention and treatment of adrenal crisis such as symptom monitoring, having extra tablets, carrying a medical-alert ID and injection kit, and self-injecting when necessary. Current patient education is ineffective at supporting self-management behaviour change or reducing adrenal crisis-related hospitalisations. This research study aims to gain an in-depth understanding of the barriers and enablers to self-management for patients with AI and to develop an evidence-based digital self-management behaviour change intervention. Methods: The study is conducted in accordance with the MRC Framework for developing complex interventions. Underpinned by the Behaviour Change Wheel (BCW), the Theoretical Domains Framework (TDF), and the Person-Based Approach, this research will be conducted in two phases: Phase 1 will involve a sequential qualitative/quantitative mixed-methods study involving focus group interviews followed by a cross-sectional survey with patients with AI recruited from patient advocacy groups and endocrine clinics in the UK. Phase 2 will develop the Support AI, a website-based digital behaviour change intervention (DBCI) informed by Phase 1 findings to support self-management for patients with AI. The most appropriate behaviour change techniques (BCTs) will be selected utilising a nominal group technique with an Expert Panel of 10-15 key stakeholders. The design of the Support AI website will be guided by the Person-Based Approach using an Agile iterative "think-aloud" technique with 12-15 participants over 3 usability testing iterations. Conclusion: A theory- and evidence-based digital behaviour change intervention will be developed which will be tested in a feasibility randomised trial following completion of this study. The projected benefit includes cost-effective health care service (reduced hospitalisations and demand for specialist services) and improved health outcomes and quality of life for patients with AI.

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.

A Decade of Waiting: Experiences of Women Living With Vulvar Crohn's Disease and Interactions With Healthcare Professionals Related to Their Sexual Well-Being: A Qualitative Study.

Background: Vulvar Crohn's disease is a rare cutaneous manifestation of inflammatory bowel disease and to date, studies have reported on under 300 cases worldwide. The condition has an increased risk of malignancy, and diagnosis is often difficult. Treatment protocols are yet to be developed. This paper aimed to provide the first account of patients' experience of living with vulvar Crohn's. Methods: A previous qualitative study exploring experiences of sexual well-being in inflammatory bowel disease and experiences of discussing sexual well-being with healthcare professionals found 3 participants who self-reported vulvar Crohn's disease. Data from the whole cohort (n = 43) were previously reported. Telephone semi-structured interviews were used for data collection. van Manen's phenomenology of practice framework informed analysis. Results: Due to significant differences in experiences, this subgroup of 3 women with vulvar Crohn's warranted separate attention. The common theme of the group was A decade of waiting, describing the major delays experienced in being diagnosed. The symptoms reported appeared to be very severe, and sexual well-being was very negatively affected. Conclusions: Women with vulvar Crohn's trust in healthcare professionals was eroded as a result of a decade delay in diagnosis, while the quality of life and relationships suffered.

Effectiveness of Fluid and Caffeine Modifications on Symptoms in Adults With Overactive Bladder: A Systematic Review.

Overactive bladder (OAB) is prevalent in men and women and negatively impacts physical and psychological health. Fluid and caffeine intake modifications, which are lifestyle modification interventions, are simple methods to manage OAB. However, studies that synthesized both interventions and found scientific evidence are scarce. This review aimed to synthesize scientific evidence on whether fluid and caffeine intake modifications are effective for OAB symptoms. PubMed, CINAHL (Cumulative Index for Nursing and Allied Health Literature), Embase, Scopus, the Cochrane Library, KoreaMed, and RISS (Research Information Sharing Service) were used to search for studies and 8 studies were included. The Cochrane risk of bias tool (RoB 2.0) and ROBINS-I (Risk Of Bias In Non-randomized Studies - of Interventions) were used to assess the quality of selected studies. Due to the heterogeneous outcome variables, a meta-analysis was not conducted. Among the 8 included, 7 studies were randomized controlled trials and one was a quasi-experimental study. Four studies assessed urgency. Caffeine reduction was statistically effective for urgency symptoms, but increasing fluid intake was not. Frequency was assessed in 5 studies, which showed decreasing caffeine and fluid intake was effective in treating the symptoms. Urinary incontinence episodes were assessed in 6 studies, and nocturia in 2. Restricting caffeine intake was effective in treating these 2 symptoms, but restricting both caffeine and fluid intake was not. Quality of life (QoL) was examined in 5 studies, and modifying fluid and caffeine intake significantly improved QoL in 2. Although there were limited studies, our review provides scientific evidence that fluid and caffeine intake modification effectively manages OAB symptoms. Further research should examine acceptability and sustainability of interventions in the long-term and enable meta-analysis.

'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.

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.

Development and test-retest reliability of a new, self-report questionnaire assessing healthcare use and personal costs in people with inflammatory bowel disease: the Inflammatory Bowel Disease Resource Use Questionnaire (IBD-RUQ).

Background and aims: The increasing prevalence of inflammatory bowel disease (IBD) poses a substantial economic burden globally on health systems and societies. Validated instruments to collect data on healthcare and other service utilisation by patients with IBD are lacking. We developed a self-report patient questionnaire to capture key resource utilisation from health services, patient and societal perspectives. Methods: The IBD Resource Use Questionnaire (IBD-RUQ), developed by a multidisciplinary team, including patients, comprises 102 items across the six categories of outpatient visits, diagnostics, medication, hospitalisations, employment and out-of-pocket expenses over the past three months. The test-retest reliability of the IBD-RUQ was studied by administering it twice among patients with IBD with a 2-week time gap. The intraclass correlation coefficients and the average cost from the healthcare, societal and patient perspectives, between test and retest assessments, overall and by service category, were summarised. Results: The IBD-RUQ captures health service use, employment and out-of-pocket expenses. Of 55 patients who completed the first questionnaire, 48 completed the retest questionnaires and were included in the analyses. Test-retest reliability for categories of medications, diagnostics, specialist outpatient and inpatient services, and days off work due to IBD ranged from moderate to excellent; primary care visits showed more limited reliability. The annualised average self-reported health service, out-of-pocket and loss of productivity costs were £4844, £320 and £545 per patient, respectively. Conclusions: The IBD-RUQ is a reliable and valid self-report measure of resource utilisation in adults with IBD and can be used to measure costs associated with IBD.

Symptoms of anal incontinence and quality of life: a psychometric study of the Norwegian version of the ICIQ-B amongst hospital outpatients.

BACKGROUND: The International Consultation on Incontinence Questionnaire-Bowel (ICIQ-B), a self-report, condition-specific questionnaire designed to assess symptoms of anal incontinence (AI), measures AI's impact on quality of life (QoL) along with perceived bowel patterns and bowel control amongst individuals with AI. In our study, we aimed to translate the ICIQ-B to Norwegian and investigate the Norwegian version's psychometric properties. METHODS: To establish a relevant, comprehensive, and understandable Norwegian ICIQ-B, cognitive interviews were conducted with 10 patients with AI, and six clinical experts reviewed the translated scale. The Norwegian ICIQ-B's structural validity, scale reliability, and content validity were tested amongst patients with AI attending hospital outpatient clinics in three regions of Norway (N = 208). RESULTS: Assessing the Norwegian ICIQ-B's content validity revealed that the questionnaire was relevant, comprehensive, and understandable. Missing data were infrequent (3.3%), and no floor or ceiling effects emerged. Three-factor and two-factor solution models, both with advantages and disadvantages, were found. The three-factor model offered the most parsimonious solution by covering most of the original scale, albeit with an unacceptably low reliability (α = .37) for the construct of bowel pattern. The two-factor model showed good reliability in terms of internal consistency for the constructs of bowel control (α = .80) and impact on QoL (α = .85) but was less parsimonious due to dismissing seven of the original 17 items and excluding the bowel pattern construct. Test-retest reliability demonstrates good stability for the Norwegian version, with an intra-class correlation coefficient of .90-.95 and weighted kappa of .39-.87 for single items. CONCLUSIONS: Although the Norwegian version of ICIQ-B demonstrates good stability and content validity, the original constructs of bowel pattern and bowel control had to be adapted, whereas the construct of impact on QoL remained unchanged. Further psychometric testing of the Norwegian ICIQ-B's factor structure is therefore recommended.

Is the Promise of PROMs Being Realized? Implementation Experience in a Large Orthopedic Practice.

Patient-reported outcome measures (PROMs), increasingly used for research and quality measurement, are lauded for their potential to improve patient-centered care, both through aggregate reporting and when integrated into clinical practice. However, there are few published studies of the resultant use of PROMs in clinical practice. This case study describes the implementation and use of PROMS in a Midwestern multispecialty medical group orthopedic practice among patients undergoing total knee and hip surgery. Specifically, rates of PROMs use by care teams are tracked over time once made available in the electronic health record. During this time, the orthopedics department achieved a patient PROMS survey response rate of 68% at baseline, 58% 3 months post-surgery, and 55% 12 months post-surgery. However, these data were only accessed by the care teams for fewer than 1% of associated clinical encounters. This suggests that making PROMs available for care team review in the electronic health record, even when coupled with relatively high response rates from patients and departmental leadership support is not enough to encourage integration of PROMs into clinical care for patients. Additional effort is required to identify barriers to PROMs use in clinical care and to test methods to enhance use.