Investigating Patient Perspectives on Using eHealth Technologies for the Self-Management of Inflammatory Bowel Disease: Mixed Methods Study.

BACKGROUND: Inflammatory bowel disease (IBD) poses significant challenges for patients, requiring continuous monitoring and self-management to improve quality of life. OBJECTIVE: This study aims to investigate the viewpoints of individuals living with IBD on the use of information and communication technology (ICT) for the self-management of their condition, with a particular focus on the concept of a "smart" toilet seat as an example of ICT for IBD self-management. METHODS: We conducted an analysis of questionnaire responses obtained from 724 participants. They were encouraged to share their use cases and identify any perceived barriers associated with ICT adoption for managing their condition. To assess their responses, we used descriptive quantitative analysis, summative content analysis, and thematic qualitative analysis. We combined these results in an epistemic network analysis to look for meaningful patterns in the responses. RESULTS: Of the 724 participants, more than half (n=405, 55.9%) were already using various forms of ICT for IBD self-management. The primary factor influencing their use of ICT was their affinity for interacting with technology. Distinct differences emerged between individuals who were using ICT and those who were not, particularly regarding their perceived use cases and concerns. CONCLUSIONS: This study provides valuable insights into the perspectives of individuals with IBD on the use of ICT for self-management. To facilitate wider adoption, addressing privacy concerns, ensuring data security, and establishing reliable ICT integration will be critical.

mHealth Physical Activity and Patient-Reported Outcomes in Patients With Inflammatory Bowel Diseases: Cluster Analysis.

BACKGROUND: Regular physical activity is associated with improved quality of life in patients with inflammatory bowel diseases (IBDs), although much of the existing research is based on self-reported data. Wearable devices provide objective data on many rich physical activity dimensions including steps, duration, distance, and intensity. Little is known about how patients with IBDs engage in these varying dimensions of exercise and how it may influence their symptom and disease-specific patient-reported outcomes (PROs). OBJECTIVE: This study aims to (1) cluster physical activity patterns from consumer-grade wearable devices and (2) assess the relationship between the clusters and PROs in patients with IBDs. METHODS: We conducted a cross-sectional and longitudinal cohort study among adults with IBDs in the Crohn's and Colitis Foundation IBD Partners cohort. Participants contribute physical activity data through smartphone apps or wearable devices in a bring-your-own-device model. Participants also complete biannual PRO questionnaires from the Patient-Reported Outcomes Measurement Information System short forms and IBD-specific questionnaires. K-means cluster analysis was used to generate physical activity clusters based on 3 key features: number of steps, duration of moderate to vigorous activity (minutes), and distance of activity (miles). Based on the clusters, we conducted a cross-sectional analysis to examine differences in mean questionnaire scores and participant characteristics using one-way ANOVA and chi-square tests. We also conducted a longitudinal analysis to examine individual cluster transitions among participants who completed multiple questionnaires, and mean differences in questionnaire scores were compared using 2-tailed paired sample t tests across 6-month periods. RESULTS: Among 430 participants comprising 1255 six-week physical activity periods, we identified clusters of low (33.7%, n=423), moderate (46%, n=577), and high (20.3%, n=255) physical activity. Scores varied across clusters for depression (P=.004), pain interference (P<.001), fatigue (P<.001), sleep disturbance (P<.001), social satisfaction (P<.001), and short Crohn Disease Activity Index (P<.001), with those in the low activity cluster having the worst scores. Sociodemographic characteristics also differed, and those with low physical activity were older (P=.002), had higher BMIs (P<.001), and had longer disease durations (P=.02) compared to other clusters. Among 246 participants who completed at least 2 consecutive questionnaires consisting of 726 questionnaire periods, 67.8% (n=492) remained in the same cluster, and only 1.2% (n=9) moved to or from the furthest clusters of low and high activity across 6-month periods. CONCLUSIONS: For patients with IBDs, there were positive associations between physical activity and PROs related to disease activity and psychosocial domains. Physical activity patterns mostly did not fluctuate over time, suggesting little variation in exercise levels in the absence of an intervention. The use of real-world data to identify subgroups with similar lifestyle behaviors could be leveraged to develop targeted interventions that provide support for psychosocial symptoms and physical activity for personalized IBD care.

The impact of the COVID-19 surge after the end of China's Zero-COVID policy on the health-related quality of life of IBD patients.

INTRODUCTION: In December 2019, COVID-19 emerged in Wuhan, Hubei Province, China, and rapidly spread worldwide. On December 2022, the Chinese government ended the zero-COVID policy, leading to a surge in cases and significantly impacting daily life. IBD patients face heightened infection risks and substantial effects on their quality of life during the pandemic. METHODS: This cross-sectional study collected demographic, COVID-19-related, and HRQoL data from 224 IBD patients who had previously received treatment at Nanjing BenQ Medical Center. Participants completed an online survey between January 9, 2023, and January 23, 2023. The SIBDQ was used to assess HRQoL. Statistical analysis was performed using SPSS version 26. RESULTS: The study found that UC patients reported higher HRQoL compared to CD patients (p = 0.037). Patients who perceived themselves as less susceptible to COVID-19 had higher scores (p = 0.006 and p = 0.009). Those whose work or study was unaffected also had higher scores (p < 0.001 and p = 0.002). Additionally, irregular medication adherence was associated with lower HRQoL scores (p = 0.014 and p = 0.007). Multivariate linear regression results showed that IBD patients whose work or study was affected during the COVID-19 pandemic scored lower than those who were not affected (p = 0.038; 95% CI, -7.96 to -0.25). Patients who discontinued IBD medication scored higher than those with irregular medication use (p = 0.020; 95% CI, 1.00 to 10.90). CONCLUSIONS: This study highlights the significant impact of the COVID-19 pandemic on the HRQoL of IBD patients. The findings emphasize the need for integrated care addressing both the physical and psychological aspects of IBD.

Patients with Inflammatory Bowel Disease Show Fewer Sex-Related Differences in Their Dietary Behavior Than the General Population: A Qualitative Analysis.

BACKGROUND: Since diet is generally recognized as an important factor directly modulating the gut microbiome, it is also considered a potential environmental triggering factor for the pathogenesis and onset of inflammatory bowel disease (IBD). While the habitual and sex-related dietary behavior of the general population has been the subject of extensive study and reporting, data on IBD patients' dietary behavior and especially its sex-related differences are underrepresented. However, as diet is an important factor in the course of IBD, we hypothesized that men and women with IBD have a different dietary profile than the general population. METHODS: We performed a cohort analysis of a monocentric, cross-sectional study and compared the sex-related dietary behavior of 82 IBD patients (n = 40 women) to a sex- and age-matched cohort of the general German population [n = 328 (n = 160 women)]. Further on, disease-related quality of life and fecal calprotectin were correlated to the IBD patients' dietary behavior. RESULTS: While sex-related dietary behavior was frequently of statistical difference in the general population within the IBD cohort, only minor numerical differences were observed between the sexes, which were rarely statistically significant. However, correlation analyses of disease-related quality of life (IBDQ) and diet revealed significant differences in male IBD patients but not in female IBD patients (p = 0.007; r = 0.409 for energy intake (kJ/d); p = 0.003, r = 0.449 for adherence to Mediterranean diet). CONCLUSION: The dietary behavior of IBD patients showed more similarity between the sexes than the general German population. Distinct sex-related trends and differences in correlation with disease parameters demonstrated a significant difference for an adaptive dietary behavior, especially in IBD men.

Effects of a Pre-Conception Care Program in Women with Inflammatory Bowel Disease: A Mixed-Methods Study Including a Randomized Controlled Trial.

PURPOSE: The purpose of this study was to conduct a pre-conception care program for women of childbearing age with inflammatory bowel disease (IBD) in Korea and verify its effects on self-efficacy for IBD management, IBD-related pregnancy knowledge, and IBD-related pregnancy anxiety. It also aimed to explore the changes in participants through the program. METHODS: A convergent mixed-methods study design was adopted. In the quantitative phase, 35 women (17 and 18 in the intervention and control group, respectively) participated. The intervention group attended a program that included small-group sessions and individual tele-coaching. To confirm the effects, data were collected before and one and four weeks after the intervention. In the qualitative stage, focus group interviews and tele-coaching were conducted with the intervention group. RESULTS: After the program ended, significant differences were observed over time between the intervention and control groups for self-efficacy for IBD management (Wald χ² = 4.41, p = .036), IBD-related pregnancy knowledge (Wald χ² = 13.80, p < .001) and IBD-related pregnancy anxiety (Wald χ² = 8.61, p = .003). Qualitative data analysis revealed the following themes: (1) improving confidence in IBD management and awareness for planned pregnancy; (2) improving IBD awareness related to pregnancy and childbirth; and (3) relieving anxiety about and actively facing pregnancy. CONCLUSION: This study is meaningful in that, to the best of our knowledge, it is the first to develop a pre-conception care program for women diagnosed with IBD and confirm its effectiveness. Furthermore, this program is expected to be suitable for patient counseling and education in clinical practice.

A real-world longitudinal study implementing digital screening and treatment for distress in inflammatory bowel disease (IBD): The COMPASS-IBD study protocol.

INTRODUCTION: Co-morbid anxiety and depression (distress) in inflammatory bowel disease (IBD) results in poorer outcomes and increased healthcare burden. IBD services require scalable treatment pathways for distress to meet this need. This real-world longitudinal study evaluates the implementation of a new integrated care pathway for distress including: 1) routine mental health screening and 2) therapist-guided, digital CBT tailored to the challenges of living with IBD (compass with adaptations for IBD: COMPASS-IBD) in a UK National Health Service (NHS) large gastroenterology service (∼ 5000 patients). METHODS: We describe a mixed-methods, observational, real-world longitudinal study. Routine mental health screening in the IBD service will identify patients with distress (using pre-defined clinical cut-offs), who will be triaged to determine appropriate treatment pathways (including participation in the COMPASS-IBD study). Participants will receive COMPASS-IBD online for ∼12 weeks (including 6 × 30-min therapist sessions). Key implementation outcomes will assess reach and adoption of the new pathway using aggregate data on uptake of mental health screening, eligibility, and consent rates for COMPASS-IBD, and number of COMPASS-IBD sessions completed. Interviews with patients and healthcare providers will primarily assess acceptability of the new pathway. Potential effectiveness will be assessed using participant questionnaires at pre-intervention, 12-weeks (post-intervention), and 6-month follow-up. The primary effectiveness outcome will be pre-post changes in distress (PHQ-ADS scores). Quantitative data will be summarised using descriptive statistics and qualitative data analysed using reflexive thematic analysis. CONCLUSION: Study findings will inform treatment pathways for co-morbid distress in IBD, and highlight adaptations required to increase future scalability and effectiveness. TRIAL REGISTRATION NUMBER: NCT05330299 (clinicaltrials.gov).

The mediating role of resilience between caregiver burden and hope among patients with inflammatory bowel disease.

AIM: To investigate whether resilience mediates the connection between caregiver burden and hope among caregivers of patients with inflammatory bowel disease (IBD). DESIGN: A cross-sectional study. METHODS: Two hundred patients with IBD were conveniently sampled from two tertiary hospitals in Jiangsu Province, China. The main instruments involved the Zarit Burden Interview, the 10-item Connor-Davidson resilience scale, and the Herth Hope Index. We conducted descriptive analysis and Pearson correlations using SPSS 25.0. The PROCESS v3.3 macro analysed the mediating effect. We report the results in line with the STROBE checklist. RESULTS: Caregiver burden was significantly negatively connected with hope and resilience, whereas resilience positively correlated with hope. The mediation role of resilience was significant in the relationship between caregiver burden and hope, with mediating effects accounting for 47.86% of the overall effect. CONCLUSIONS: Resilience partially mediates the association between caregiver burden and hope among patients with IBD. This finding highlights the protective role of resilience in undermining caregiver burden and strengthening hope. IMPLICATIONS FOR PRACTICE: In clinical practice, healthcare providers should perform routine psychological assessments for caregivers of patients with IBD. Furthermore, resilience training should be incorporated into interventions to alleviate caregiver burden and enhance hope. PATIENT OR PUBLIC CONTRIBUTION: None.

Mindfulness-Based Interventions on Psychological Comorbidities in Patients with Inflammatory Bowel Disease: A Systematic Review and Meta-Analysis.

BACKGROUND: Inflammatory bowel disease (IBD) is a chronic, lifelong disease, so IBD patients are highly susceptible to negative emotions, such as anxiety and depression, resulting in a reduced quality of life. Mindfulness-based intervention (MBI) is widely used to reduce stress, anxiety and depression in people. Therefore, this study conducted a systematic review of mindfulness-based intervention training on anxiety, depression, and quality of life in patients with IBD through meta-analysis. METHODS: Search papers in PubMed, Web of Science, Cochrane Library, Google Scholar, CNKI, Wanfang, and Embase databases. The search time limit was from the establishment of the database to May 2023. Randomized controlled trial studies of the effect of mindfulness intervention training on patients with IBD were screened, the included results were integrated and analyzed, and ReviewManager 5.4 was used for meta-analysis. RESULTS: A total of 14 studies with a total of 1030 IBD patients were included. A total of 10 studies showed that the anxiety of patients in the mindfulness intervention group was significantly reduced by (standard mean difference (SMD) = -0.73, 95% confidence interval (CI): -1.01 to -0.45) compared to the control group. 8 studies showed that the intervention group significantly reduced patients' depression (SMD = -0.60, 95% CI: -0.78 to -0.42). 7 studies showed that the patient's quality of life improved after mindfulness intervention (SMD = 0.66, 95% CI: 0.45-0.87). CONCLUSION: Mindfulness-based intervention training can improve anxiety, depression, and quality of life in patients with inflammatory bowel disease in the short term, but the long-term effects need to be confirmed by more randomized controlled trials.

Self-care in patients affected by inflammatory bowel disease and caregiver contribution to self-care (IBD-SELF): a protocol for a longitudinal observational study.

INTRODUCTION: Supporting patient self-care and the contribution of their caregivers is crucial in chronic illness care. Inflammatory bowel disease (IBD) is a chronic condition whose prevalence is expected to double, especially in Western countries. IBD symptoms can negatively impact patients' well-being, causing high anxiety, depression, stress and reduced quality of life. These symptoms also affect the health of family members and friends, who often take on caregiving roles during exacerbations. Knowledge about self-care in IBD (IBD-SELF) is limited, and few studies have explored this context. This paper outlines a research protocol for a multicentre longitudinal study to investigate patient self-care and caregiver contributions to IBD-SELF. METHODS AND ANALYSIS: A sample of 250 consecutive patients diagnosed with IBD and their caregivers will be recruited from 9 dedicated IBD units in northern, central and southern Italy during outpatient visits. Data collection will occur at baseline, 6 and 12 months after enrolment. Multivariable regressions, path analyses and structural equation models will identify predictors (eg, health literacy, caregiver burden and depression) and outcomes (use of healthcare services, disease severity and quality of life) of self-care and caregiver contributions. Dyadic analyses will control for the interdependence of dyad members. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Territorial Ethics Committee (Lazio 3) N. 0023486/23 and registered on ClinicalTrials.gov (Identifier number: NCT06015789). This study will enhance our understanding of the self-care process in the patient-caregiver dyad in IBD, aiding the design of future educational interventions and promoting greater patient and caregiver involvement in the care pathway. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov: NCT06015789.

Risk Factors for the Development of Eating Disorders in Adolescents with Early-Onset Inflammatory Bowel Diseases.

Individuals with inflammatory bowel diseases (IBDs) have an increased risk of developing psychiatric comorbidities, including eating disorders (EDs). We aimed to investigate the potential association between key disease characteristics, including psychological features, and the development of EDs in a clinical sample of adolescents with IBDs. We enrolled 52 adolescents with IBDs, 83% of whom were in clinical remission, and systematically collected additional information on disease duration, the total number of relapses, the use of steroids, and the number of hospital admissions. All participants completed a validated psychometric battery assessing psychological symptoms (Symptom Checklist-90-Revised, SCL-90-R), alexithymia (Toronto Alexithymia Scale-20, TAS-20), and ED symptomatology (Eating Disorders Inventory-3rd edition, EDI-3). About one in ten patients (9.6%) reported Eating Disorder Risk scores higher than the cut-off on the EDI-3 subscale, specifically addressing the risk of developing EDs. According to the EDI-3 scores, the risk of developing EDs directly correlated with the number of total relapses of IBDs (p < 0.05). The TAS-total scores also correlated with the number of total relapses (p < 0.01), as well as with the number of steroid cycles (p < 0.05), the number of hospital admissions (p < 0.05), and overall disease duration (p < 0.05). Our findings suggest that disease relapses increase the risk of developing both EDs and alexithymia in adolescents with IBDs. The recurrence of disease relapses should be identified and screened early on to prevent the onset of psychiatric disorders, including EDs. Research should be conducted on larger samples with different IBD phenotypes to further investigate the characteristics of patients with IBDs at risk of developing EDs.

The body as an obstacle and the "other". How patients with chronic inflammatory bowel diseases view their body, self and the good life.

BACKGROUND: Treatment of chronic inflammatory bowel disease (IBD) aims to improve patients' quality of life and the extent of treatment success is measured via patient reported outcomes (PROs). However, questionnaires used to collect PROs often include scales that are not specific to IBDs. Improving these scales requires a deeper understanding of patients' lived experience. With this study we give first insights and develop hypotheses on how patients with IBDs experience their body and self and how they adjust their life plans in the context of precision medicine (PM). The guiding question is to understand what they need to achieve a good life, while facing their disease. METHODS: We developed a conception of the "good life" that draws on Philippa Foot's "naturalized" approach and distinguishes six different dimensions that are relevant for a good life. This conception guided us as we conducted 10 qualitative interviews with patients suffering from IBD who were in precision medicine clinical research settings. The interviews aimed to gain insights for answering our research question: How do body experiences affect the good life of patients with IBD? We analyzed the interviews with interpretative phenomenological analysis (IPA). RESULTS: Five group experiential themes emerged: (i) Life options and plans, (ii) other people's responses, (iii) strategies to deal with others' responses, (iv) perception of the body and self, and (v) perception of life as good despite suffering. We report here on three of them (i, iv and v), which are primarily relevant for evaluating the outcomes of PM care. Whereas with "life options and plans (i)," our study predominantly confirmed previous research, with "perception of the body and self (iv)," we found that some of the patients changed their relationship to their body and themselves. They perceived the body or the disease as the "other" and their self appears divorced from their own body. Although this might be an avoidance strategy patients use to assign responsibility for their condition and its "disgusting" symptoms to the "other," it is important to include it in patient reported outcome (PRO) assessments. CONCLUSIONS: We conclude with the insight that the multi-dimensional approach based on Foot's concept of a good life is well-suited as a basis for investigating the quality of life of people with IBD. Interviews based on this concept produced results that go beyond the understanding of health-related quality of life (HRQoL). Additionally, we offer some considerations about patients' opportunities for achieving a good life and suggestions for further developing patient reported outcome scales.

The impact of cognitive functions, psychological disorders, and coping strategies on quality of life and disease outcomes in patients with inflammatory bowel diseases: A cross-sectional study.

Quality of life (QoL) in patients with inflammatory bowel disease (IBD) is influenced by several factors, many of which may also impact cognitive function. However, the extent of the interaction among these factors, QoL, and disease outcomes in IBD patients remains unknown. We thus aim to characterize the relationships among psychological disorders, coping mechanisms, cognitive function, and the overall impact on QoL and disease outcomes in patients with IBD. This cross-sectional observational study was conducted at an academic care center. QoL was evaluated using the Short Inflammatory Bowel Disease Questionnaire (SIBDQ), and disease severity was evaluated using the Harvey-Bradshaw Index (HBI) for Crohn's disease (CD) and the Simple Clinical Colitis Activity Index (SCCAI) for ulcerative colitis (UC). We also used the Hospital Anxiety and Depression scale (HADS). Regression models were used to test the associations among QoL, number of hospitalizations, disease severity, cognitive functioning (working memory [WM] and reaction time), and coping strategies while controlling for anxiety and depressive symptoms, age, and sex. This study included 41 patients (24 patients with CD and 17 with UC) whose mean age was 28.2 (±8.4) years (23 males) and mean SIBDQ score was 51.5 (±10.0). Patients with more WM errors had lower QoL scores (P = .041), whereas patients with higher anxiety levels had lower QoL and more active UC (P = .008 and P = .016, respectively). The use of avoidant coping mechanisms was associated with a significantly higher number of hospitalizations (P = .038), and patients who adopted more emotion-focused coping strategies had a longer illness duration (P = .021). Finally, patients with higher education levels were found to use more active coping mechanisms than others. These results confirm the impact of cognitive, psychological, and coping factors on QoL and disease outcomes in patients with IBD; however, the mechanisms by which these factors interrelate remain unclear. Therapies aimed at improving both cognitive functions and psychological conditions may thus be effective at improving QoL and disease outcomes in IBD patients, and education may play a positive role in promoting the adoption of more effective coping strategies among IBD patients.

ASSESSMENT OF QUALITY OF LIFE IN ELDERLY PATIENTS WITH INFLAMMATORY BOWEL DISEASE WITH MILD ACTIVITY AND IN CLINICAL REMISSION.

BACKGROUND: Inflammatory bowel disease (IBD), represented by Crohn's disease (CD) and ulcerative colitis (UC), is a chronic condition that affects all age groups, predominantly in young individuals. Currently, an increase in the prevalence of IBD has been documented, in parallel with the increase in the elderly population. The scarce number of studies that better characterize the impact of IBD on Quality of Life (QoL) in the elderly motivated the present study. OBJECTIVE: To evaluate the impact of IBD on the QoL of elderly people treated at a Tertiary IBD Center. METHODS: Prospective cross-sectional study that included elderly patients (age ≥60 years) with quiescent or mildly active IBD treated at the HU-UFJF IBD Center between March 2019 and December 2022. Elderly companions without severe comorbidities who attended the consultation with the patients were included as a control group. Sociodemographic and IBD-related characteristics were recorded. QoL was assessed using previously validated questionnaires (WHOQOL-BREF and IBDQ). Patients with IBD with moderate to severe activity, history of recent or imminent hospitalization, serious or opportunistic infections in the last 6 months, previous neoplasia, dementia, and difficulty understanding/fulfilling the questionnaires were excluded. RESULTS: A total of 123 patients were included (74 with IBD and 49 in the control group), with a mean age of 67±6.2 years, 52.7% with CD, and 47.3% with UC. Mild disease activity was observed in 31.1%. Both groups (IBD patients and control) were comparable based on age, sex, BMI, and the Charlson Comorbidity Index. Patients with IBD and controls had similar QoL scores in the different domains assessed by the WHOQOL-BREF. On the other hand, when evaluating the general facet of QoL, IBD patients had significantly lower scores in General QoL (3.71±0.87 versus 4.02±0.62, respectively; P=0.021) and General Health (3.32±1.05 versus 3.69±0.94, respectively; P=0.035). The presence of mildly active IBD negatively impacted the general health score (2.91±0.99 versus 3.47±1.04, respectively; P=0.035) and the physical domain of the WHOQOL-BREF (12.27±2.63 versus 13.86±2.61, respectively; P=0.019) when compared to patients in remission. Conversely, no impact on QoL was observed with the Application of the IBDQ questionnaire regarding the type of the disease (161±38.5 versus 163.1±42.6 for CD and UC, respectively; P=0.84) or the presence of activity (152.5±38.8 versus 166.4±40.5, respectively; P=0.17). CONCLUSION: No statistically significant differences were found between elderly patients with mildly active or quiescent IBD and elderly patients without IBD when observing global QoL scores. However, IBD negatively impacted the general facet of QoL, just as mild activity was associated with lower scores in general health and the physical domain assessed by the WHOQOL-BREF. Patients with IBD treated with biological therapy had better Qol than those on conventional therapy. Future studies are needed to choose the most appropriate tool for assessing QoL in this population.

A qualitative evaluation of treatment fidelity alongside a pilot trial of a novel therapy for pediatric Inflammatory Bowel Disease.

BACKGROUND: Process evaluations conducted alongside clinical trials can improve understanding of treatment fidelity and provide contextual knowledge to aide interpretations of trial outcomes. We adopted a multiple-goals perspective to investigate treatment fidelity in two related pilot clinical trials of an adjuvant treatment for pediatric-onset Inflammatory Bowel Disease. This included a focus on barriers and enablers of performing trial-specific activities and of integrating those activities into daily life. METHODS: We conducted one-time semi-structured interviews with a sub-sample of participants of the Resistant Starch in Pediatric Inflammatory Bowel Disease (NCT04522271) and Optimized Resistant Starch in Inflammatory Bowel Disease pilot trials (NCT04520594) and their caregivers (N = 42). The trials examined the effects of personalized food-derived resistant starches as an adjuvant therapy on intestinal microbiome functioning. Interviews were conducted within 3-months of participants completing or withdrawing from the trials. Interview guides with age-appropriate language were developed and pilot tested. Codes were identified inductively though conventional content analysis and then mapped to personal projects analysis, to explore how participants navigated between activities. RESULTS: Three themes were identified. The first described the potential impact of living with inflammatory bowel disease and taking prescribed medications. The second described characteristics of trial-specific activities that might impact on their enactment, including perceived difficulty, and challenges following procedures or using trial materials. The third described the integration of trial-specific activities with school, work, household demands, and social, and extracurricular activities. CONCLUSIONS: Adjusting to living with inflammatory bowel disease and managing its treatment can impact trial participation. Integrating trial-related activities into daily life can be challenging, which could heighten perceptions of goal conflict. Findings can inform interpretations of trial outcomes and development of strategies for trial optimization and implementation of the adjuvant therapy into clinical practice.

Predictors of Health-Related Quality of Life in Younger Persons With a Fecal Ostomy and Inflammatory Bowel Disease.

PURPOSE: The purpose of this study was to determine predictors of health-related quality of life (HRQOL) in persons aged 18 to 40 years living with inflammatory bowel disease (IBD) and a fecal ostomy. DESIGN: Descriptive cross-sectional study. SUBJECTS AND SETTING: The sample comprised 98 participants recruited from online discussion boards/support groups for individuals living with IBD and an intestinal ostomy. More than three-quarters (76.5%) were female; 45.9% (n = 44) had lived with an ostomy for 2 years or less. Data were collected through an online survey made available from October 2018 to December 2018. METHODS: HRQOL was measured using the Healthy Days Core Module (Centers for Disease Control and Prevention HRQOL-4). Item 1 from the CDC HRQOL-4 represented the variable self-rated health (SRH). The subscales of bodily pain, general mental health, and vitality from the Short-Form 36 Health Survey and the subscales of ostomy function and body image/sexuality plus skin irritation item from the Young-Fadok Stoma Quality of Life (QOL) Scale were used to measure predictors of pain, psychological distress, fatigue, peristomal skin irritation, leakage of ostomy appliance, and body image/sexual disturbance. Correlational and hierarchical multiple linear regression analyses were conducted to complete hypotheses testing. RESULTS: Significant correlations were found between pain, fatigue, peristomal skin problems, psychological distress, SRH, and HRQOL. Pain, fatigue, psychological distress, and self-related health explained 53.2% of the variance in HRQOL based on hierarchical multiple linear regression and controlling for demographic variables such as marital and employment status. CONCLUSIONS: Findings suggest global disease symptoms of IBD in the form of pain, fatigue, and psychological distress and individual perception of health (SRH) are more important than transient ostomy symptoms of peristomal skin complications and leakage of ostomy appliance in predicting HRQOL. Individuals in this population regularly use online resources indicating a need to understand and gain insight into the information posted online in the management of the fecal ostomy and IBD.

Making sense of pain in inflammatory bowel disease (IBD): A qualitative study.

OBJECTIVES: Inflammatory bowel disease (IBD) is a chronic, gastrointestinal tract condition, in which pain is one of the most widespread and debilitating symptoms, yet research about how individuals make sense of their IBD pain is lacking. The current study aimed to explore how individuals with IBD understand their pain. METHODS: Twenty participants, recruited via the Crohn's & Colitis UK charity, were interviewed about their understanding of their IBD pain using the Grid Elaboration Method that elicits free associations on which it invites elaboration. Thematic analysis was used to organise transcribed verbatim data. RESULTS: Three related themes - making sense of my pain, navigating my care and support and it takes its toll - comprising seven sub-themes, illustrated the ways in which participants made sense of pain experientially, multi-dimensionally, and in the broader context of IBD and its symptoms. The psychological impact of pain was evident across all interviews. CONCLUSIONS: The findings are consistent with other research in IBD pain, demonstrating the importance of pain in IBD. Sense-making underpins both emotional and practical responses to pain and ideally is constructed as an integral part of clinical care of IBD.

Influence of multidisciplinary team care with abundant nurse staffing on patient-reported outcomes among patients with inflammatory bowel disease in clinical remission.

BACKGROUND: Patients with inflammatory bowel disease (IBD) experience difficulties in daily life and demanding self-care needs. The goal of our support for patients is to ease their difficulties and improve their belief in their capacity to self-manage their disease (self-efficacy), by increasing their ability for self-care. The nurse's contribution is vital in empowering patients and supporting them to better manage their disease. There is evidence that higher nurse staffing levels are associated with better patient outcomes in acute care settings, but little is known about the outpatient setting. The objective of this study was to explore the impact of multidisciplinary team care with abundant nurse staffing levels on patient-reported outcome measures (PROMs) among patients with IBD, encompassing Crohn's disease (CD) and ulcerative colitis (UC), in clinical remission. METHODS: Patients with IBD in clinical remission were included because disease activity influences the patient's subjective evaluation. A total of 499 valid responses from two different sources were analyzed: 318 from a specialized IBD clinic with abundant nurse staffing and a multidisciplinary care team (UC: 83, CD: 235) and 181 from an online survey panel (UC: 109, CD: 72). The IBD Self-Efficacy Scale (IBD-SES) and the difficulty of life scale (DLS) were used as disease-specific PROMs. RESULTS: In two multiple regression models adjusted by background characteristics (age, sex, diagnosis [UC/CD], employment status, use of biologics, and disease duration) using the IBD-SES or DLS as a dependent variable, the responses from clinic patients showed a more favorable score (higher self-efficacy or lower difficulty) than the online responses. CONCLUSIONS: Multidisciplinary team care with abundant nurse staffing may improve self-efficacy and ease difficulties of life among patients with IBD in clinical remission. These results could help bring attention to nurse staffing in an outpatient setting, which has previously been overlooked, and be the first to provide evidence of its importance in encouraging enhanced staffing levels.

Nutritional Profile, Disease Severity, and Quality of Life of Patients with Inflammatory Bowel Disease: A Case-Control Study.

INTRODUCTION: Diet is thought to play an important role in the clinical course and quality of life (QOL) of patients with inflammatory bowel disease (IBD). However, dietary habits of patients with IBD are still unknown. This case-control study aims to compare the dietary habits of patients with IBD to healthy controls and evaluate differences in disease severity and QOL. MATERIALS AND METHODS: Food frequency, severity scores using the Harvey-Bradshaw and Ulcerative colitis activity index, and QOL were assessed using online questionnaires. Dietary habits were compared for patients with active disease and remission and for those with low QOL (LQOL) and high QOL (HQOL). RESULTS: We recruited 61 patients with IBD and 101 controls. Significance was set at p = 0.05. Controls consumed significantly more daily calories (2546 vs. 1641, p = 0.001). However, patients with IBD consumed a higher percentage of carbohydrates (50% vs. 45%, p = 0.001), more red meat (p = 0.024), and less fiber, sucrose, and lactose (p = 0.001, 0.001, and 0.036). Patients with active disease had higher lipid intake, lower protein intake, and lower QOL (47 vs. 58, p = 0.001). Dietary differences between LQOL and HQOL mirrored those between active disease and remission. CONCLUSION: This study is the first to provide valuable insights into the nutritional profile of Lebanese patients with IBD.

Life changes, self-prevention, knowledge and mental health among inflammatory bowel disease patients during COVID-19 pandemic: a cross-sectional study.

Background: With the COVID-19 pandemic going to be COVID-19 endemic, the negative impact of COVID-19 on the mental health of IBD patients cannot be ignored. This study aimed to investigate the occurrence of anxiety and depression in IBD patients during the COVID-19 pandemic and analyze the factors associated with mental health. Methods: Patients registered at the IBD center were enrolled. Electronic questionnaires about the IBD patient's demographic information, basic knowledge of COVID-19, public self-prevention measures, daily life changes, and anxiety and depression were distributed. Results: Two hundred and fifteen IBD patients finished this study and reported to have anxiety (27%) or depression (34%). During the COVID-19 pandemic, 10.2% of IBD patients reported their diet changes, 58.5% of IBD patients changed their daily physical activities from 3.27 ± 3.252 h to 2.30 ± 2.78 h, 33.7% of IBD patients changed their sleeping duration from 7.99 ± 1.322 h to 8.18 ± 1.447 h. IBD patients' waiting time for admission (OR: 3.688, 95%CI: 1.003-13.554), regularly oral medicine administration (OR: 18.407, 95%CI: 1.975-171.530) and diet changes (OR: 6.167, 95%CI: 2.158-17.626) were positively correlated with anxiety or depression. IBD patients' timely periodic infusion of biological agents (OR: 0.586, 95%CI: 0.413-0.830) was negatively correlated with anxiety or depression. IBD patients' knowledge of COVID-19, public self-prevention, physical activities, and sleep duration changes showed no significant correlation with anxiety and depression, all p values > 0.05. Conclusion: The main factors of IBD patients' mental health were diet changes, waiting time for admission, taking oral medicine regularly, and timely periodic infusions of biological agents. Ensuring the supply of routine treatment and medication for IBD patients and establishing systemic online IBD self-management programs would be the focus of major public health events.

Effect of Ward-Noise-Reduction Management on the Mental Health and Quality of Life of Patients with Inflammatory Bowel Disease.

OBJECTIVE: This study aimed to explore the effect of ward-noise-reduction management on the mental health and quality of life of patients with inflammatory bowel disease. METHODS: The medical records of 275 patients with inflammatory bowel disease admitted to the First Affiliated Hospital of Wenzhou Medical University from January 2020 to January 2023 were retrospectively analyzed. Routine care was performed for such hospitalized patients from January 2020 to July 2021. Thus, 124 patients were enrolled in the control group. From August 2021 to January 2023, our hospital implemented ward-noise-reduction management for such inpatients, and 151 patients were included in the observation group. The Athens Insomnia Scale (AIS), the State-Trait Anxiety Inventory, the Inflammatory Bowel Disease Questionnaire (IBDQ), and the noise level at the time of admission and discharge were compared. RESULTS: No significant difference in the State Anxiety Scale (S-AI), Trait Anxiety Scale (T-AI), and AIS and IBDQ scores at baseline existed between the two groups (P > 0.05). After nursing, the S-AI, T-AI, and AIS scores of the observation group were lower than those of the control group, and the IBDQ score of the observation group was higher than that of the control group (P < 0.05). The noise level of the observation group was lower than that of the control group during hospitalization in maximum sound level and average intermediate (P < 0.05). CONCLUSIONS: The application of ward-noise-reduction management in the nursing of patients with inflammatory bowel disease can improve their negative mood, improve their sleep quality, and quality of life, and reduce the ward noise level in maximum sound level and average intermediate, which has high clinical value.