Assessment of quality of life in patients with inflammatory bowel disease / Avaliação da qualidade de vida em pacientes com doença inflamatória intestinal

Inflammatory bowel disease (IBD) is a chronic inflammatory disorder of the gastrointestinal tract, occurring main-ly in the young, socioeconomically active age group. Both the recurrent-remitting course of symptoms and the chronicity of the disease impact patients' quality of life (QoL). Objective: determine the contributing factors asso-ciated with QoL in IBD patients in a tertiary service. Methods: a cross-sectional study of patients seen at the IBD outpatient clinic of the Federal University of Pelotas from January to November 2020, with clinical and laboratory data collection. Disease assessment was performed using Crohn's Disease Activity Index for Crohn's disease and Mayo score for ulcerative colitis and quality of life through the Inflammatory Bowel Disease Questionnaire (IBDQ). Results: the presence of a history of depression resulted in a significant impact on the overall QoL (p = 0.005) and mainly in the systemic symptoms (p = 0.04), social (p <0.001), and emotional (p = 0.008) domains. Regarding disease activity, statistical significance was evidenced in the intestinal symptoms domain (p <0.001) and overall QoL (p <0.001). Conclusion: a history of psychiatric illness and IBD disease activity were predictors of poorer QoL assessed by the IBDQ (AU)

A doença inflamatória intestinal (DII) é um distúrbio inflamatório crônico do trato gastrointestinal ocorrendo prin-cipalmente na faixa etária jovem socioeconomicamente ativa. Tanto o curso recorrente-remitente dos sintomas quanto a cronicidade da doença impactam a qualidade de vida (QoL) dos pacientes. Objetivo: avaliar a qualidade de vida de pacientes com DII em um serviço terciário. Métodos: estudo transversal de pacientes atendidos no ambulatório de DII da Universidade Federal de Pelotas no período de janeiro a novembro de 2020, com coleta de dados clínicos e laboratoriais. A atividade de doença foi avaliada pelo Crohn's Disease Activity Index para os casos de Doença de Crohn e escore de Mayo para os casos de retocolite ulcerativa e QoL por meio do Inflammatory Bowel Disease Questionnaire (IBDQ). Resultados: a presença de história de depressão resultou em impacto significativo na QoL (p = 0,005) e principalmente nos domínios sintomas sistêmicos (p = 0,04), social (p < 0,001) e emocional (p = 0,008). Em relação à atividade da doença, evidenciado significância estatística nos domínios sintomas intes-tinais (p < 0,001) e qualidade global (p < 0,001). Conclusão: há evidências de que os pacientes com história de depressão e não remissão da DII apresentam maior impacto na qualidade de vida avaliados pelo IBDQ (AU)

Transition Readiness Not Associated With Measures of Health in Youth With IBD.

BACKGROUND: It remains unclear how transition readiness is associated with various domains of health in children and young adults. Our objective was to describe the transition readiness of children and young adults with inflammatory bowel disease (IBD) and examine its associations with demographic factors, IBD activity, and measures of physical, psychological, and social health. METHODS: We recruited children ages 12 to 17 and young adults ages 18 to 20 from 2 internet-based cohorts sponsored by the Crohn's & Colitis Foundation. Participants self-reported demographics, IBD activity, transition readiness, health-related quality of life, and Patient-Reported Outcomes Information Systems domains of physical, psychological, and social health. RESULTS: Among 361 pediatric and 119 adult participants, age and female sex were associated with transition readiness. The association was greater in the pediatric cohort. Having IBD in remission was associated with worse transition readiness in the pediatric cohort only (beta = 0.3; P = 0.003). Health-related quality of life and Patient-Reported Outcomes Information Systems measures of fatigue, pain interference, and sleep disturbance were not associated with transition readiness in either children or adults. We observed few small associations between psychological or social health and transition readiness. Better transition readiness was associated with greater anxiety in adults (beta = -0.02; P = 0.02) and greater peer relationships among children (beta = 0.01; P = 0.009). CONCLUSIONS: In children and young adults with IBD, transition readiness was associated with older age and female sex. Associations between transition readiness and physical, psychological, and social health were either small, inconsistent across age groups, or nonexistent.

Mental Health Costs of Inflammatory Bowel Diseases.

BACKGROUND: Mental health diagnoses (MHDs) were identified as significant drivers of inflammatory bowel disease (IBD)-related costs in an analysis titled "Cost of Care Initiative" supported by the Crohn's & Colitis Foundation. In this subanalysis, we sought to characterize and compare IBD patients with and without MHDs based on insurance claims data in terms of demographic traits, medical utilization, and annualized costs of care. METHODS: We analyzed the Optum Research Database of administrative claims from years 2007 to 2016 representing commercially insured and Medicare Advantage insured IBD patients in the United States. Inflammatory bowel disease patients with and without an MHD were compared in terms of demographics (age, gender, race), insurance type, IBD-related medical utilization (ambulatory visits, emergency department [ED] visits, and inpatient hospitalizations), and total IBD-related costs. Only patients with costs >$0 in each of the utilization categories were included in the cost estimates. RESULTS: Of the total IBD study cohort of 52,782 patients representing 179,314 person-years of data, 22,483 (42.6%) patients had at least 1 MHD coded in their claims data with a total of 46,510 person-years in which a patient had a coded MHD. The most commonly coded diagnostic categories were depressive disorders, anxiety disorders, adjustment disorders, substance use disorders, and bipolar and related disorders. Compared with patients without an MHD, a significantly greater percentage of IBD patients with MHDs were female (61.59% vs 48.63%), older than 75 years of age (9.59% vs 6.32%), white (73.80% vs 70.17%), and significantly less likely to be younger than 25 years of age (9.18% vs 11.39%) compared with those without mental illness (P < 0.001). Patients with MHDs had significantly more ED visits (14.34% vs 7.62%, P < 0.001) and inpatient stays (19.65% vs 8.63%, P < 0.001) compared with those without an MHD. Concomitantly, patients with MHDs had significantly higher ED costs ($970 vs $754, P < 0.001) and inpatient costs ($39,205 vs $29,550, P < 0.001) compared with IBD patients without MHDs. Patients with MHDs also had significantly higher total annual IBD-related surgical costs ($55,693 vs $40,486, P < 0.001) and nonsurgical costs (medical and pharmacy) ($17,220 vs $11,073, P < 0.001), and paid a larger portion of the total out-of-pocket cost for IBD services ($1017 vs $905, P < 0.001). CONCLUSION: Patients whose claims data contained both IBD-related and MHD-related diagnoses generated significantly higher costs compared with IBD patients without an MHD diagnosis. Based on these data, we speculate that health care costs might be reduced and the course of patients IBD might be improved if the IBD-treating provider recognized this link and implemented effective behavioral health screening and intervention as soon as an MHD was suspected during management of IBD patients. Studies investigating best screening and intervention strategies for MHDs are needed.

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.

VALIDation of the IBD-Disk Instrument for Assessing Disability in Inflammatory Bowel Diseases in a French Cohort: The VALIDate Study.

BACKGROUND AND AIMS: Inflammatory bowel diseases [IBD] are disabling disorders. The IBD-Disability Index [IBD-DI] was developed for quantifying disability in IBD patients but is difficult to use. The IBD-Disk is a visual adaptation of the IBD-DI. It has not been validated yet. The main objectives were to validate the IBD-Disk and to assess the clinical factors associated with a change in the score and its variability over time. METHODS: From May 2018 to July 2019, IBD patients from three university-affiliated hospitals responded twice to both IBD-Disk and IBD-DI at 3-12 month intervals. Validation included concurrent validity, reproducibility, and internal consistency. Mean IBD-Disk scores were compared according to clinical factors. Variability was assessed by comparing scores between baseline and follow-up visits. RESULTS: A total of 447 patients [71% Crohn's disease, 28% ulcerative colitis] were included in the analysis at baseline and 265 at follow-up. There was a good correlation between IBD-Disk and IBD-DI [r = 0.75, p <0.001]. Reproducibility was excellent [intra-class correlation coefficient = 0.90], as well as internal consistency [Cronbach's α = 0.89]. The IBD-Disk was not influenced by IBD type but was associated with female gender and physician global assessment. Extra-intestinal manifestations, history of resection, elevated C-reactive protein and faecal calprotectin also tended to be associated with higher disability. The IBD-Disk score decreased in patients becoming inactive over time. CONCLUSIONS: This study validated the IBD-Disk in a large cohort of IBD patients, demonstrating that it is a valid and reliable tool for quantifying disability for both CD and UC.

Development of the symptoms and impacts questionnaire for Crohn's disease and ulcerative colitis.

BACKGROUND: Patient-reported outcome (PRO) measures historically used in inflammatory bowel disease have been considered inadequate to support future drug labelling claims by regulatory agencies. AIMS: To develop PRO tools for use in Crohn's disease (CD) and ulcerative colitis (UC) following guidance issued by the US FDA and the ISPOR (International Society for Pharmacoeconomics and Outcomes Research). METHODS: Concept elicitation and cognitive interviews were conducted in adult patients (≥18 years) across the United States and Canada. Semi-structured interview guides were used to collect data, and interview transcripts were coded and analysed. Concept elicitation results were considered alongside existing literature and clinical expert opinion to identify candidate PRO items. Cognitive interviews evaluated concept relevance, interpretability and structure, and facilitated instrument refinement. Concept elicitation participants, except those with an ostomy, underwent centrally read endoscopy to assess inflammatory status. RESULTS: In all, 54 participants (mean age: 46.2 years; 66.7% female) were included in the CD concept elicitation interviews. In total, 80 symptom concepts and 61 impact concepts were identified. After three waves of cognitive interviews, the 31-item Symptoms and Impacts Questionnaire for CD (SIQ-CD) was developed. In the UC concept elicitation phase, 53 participants were interviewed (mean age: 41.4 years; 49.1% female). In total, 79 symptoms concepts and 49 impact concepts were identified. Following two waves of cognitive interviews, the 29-item Symptoms and Impacts Questionnaire for UC (SIQ-UC) was developed. Both instruments include four symptom and six impact domains. CONCLUSIONS: We developed PROs to support CD and UC drug labelling claims. Psychometric validation studies to evaluate instrument reliability and responsiveness are ongoing.

Environmental, Nutritional, and Socioeconomic Determinants of IBD Incidence: A Global Ecological Study.

BACKGROUND AND AIMS: The wide variation in inflammatory bowel disease [IBD] incidence across countries entails an opportunity to recognise global disease determinants and hypothesise preventive policies. METHODS: We fitted multivariable models to identify putative environmental, nutritional, and socioeconomic determinants associated with the incidence of IBD (i.e. ulcerative colitis [UC] and Crohn's disease [CD]). We used the latest available country-specific incidence rates, and aggregate data for 20 determinants, from over 50 countries accounting for more than half of the global population. We presented the associations with exponentiated beta coefficients (exp[ß]) indicating the relative increase of disease incidence per unit increase in the predictor variables. RESULTS: Country-specific incidence estimates demonstrate wide variability across the world, with a median of 4.8 new UC cases (interquartile range [IQR] 2.4-9.3), and 3.5 new CD cases [IQR 0.8-5.7] per 100 000 population per year. Latitude (exp[ß] 1.05, 95% confidence interval [CI] 1.04‒1.06, per degree increase), prevalence of obesity [1.05, 1.02‒1.07, per 1% increase], and of tobacco smoking [0.97, 0.95‒0.99, per 1% increase] explained 71.5% of UC incidence variation across countries in the adjusted analysis. The model for CD included latitude [1.04, 1.02‒1.06], expenditure for health (1.03, 1.01‒1.05, per 100 purchasing power parity [PPP]/year per capita increase), and physical inactivity prevalence [1.03, 1.00‒1.06, per 1% increase], explaining 58.3% of incidence variation across countries. Besides expenditure for health, these associations were consistent in low/middle- and high-income countries. CONCLUSIONS: Our analysis highlights factors able to explain a substantial portion of incidence variation across countries. Further high-quality research is warranted to develop global strategies for IBD prevention.

Evaluating the Cost-Effectiveness of Early Compared with Late or No Biologic Treatment to Manage Crohn's Disease using Real-World Data.

BACKGROUND AND AIMS: We evaluated the cost-effectiveness of early [≤2 years after diagnosis] compared with late or no biologic initiation [starting biologics >2 years after diagnosis or no biologic use] for adults with Crohn's disease in Switzerland. METHODS: We developed a Markov cohort model over the patient's lifetime, from the health system and societal perspectives. Transition probabilities, quality of life, and costs were estimated using real-world data. Propensity score matching was used to ensure comparability between patients in the early [intervention] and late/no [comparator] biologic initiation strategies. The incremental cost-effectiveness ratio [ICER] per quality-adjusted life year [QALY] gained is reported in Swiss francs [CHF]. Sensitivity and scenario analyses were performed. RESULTS: Total costs and QALYs were higher for the intervention [CHF384 607; 16.84 QALYs] compared with the comparator [CHF340 800; 16.75 QALYs] strategy, resulting in high ICERs [health system: CHF887 450 per QALY; societal: CHF449 130 per QALY]. In probabilistic sensitivity analysis, assuming a threshold of CHF100 000 per QALY, the probability that the intervention strategy was cost-effective was 0.1 and 0.25 from the health system and societal perspectives, respectively. In addition, ICERs improved when we assumed a 30% reduction in biologic prices [health system: CHF134 502 per QALY; societal: intervention dominant]. CONCLUSIONS: Early biologic use was not cost-effective, considering a threshold of CHF100 000 per QALY compared with late/no biologic use. However, early identification of patients likely to need biologics and future drug price reductions through increased availability of biosimilars may improve the cost-effectiveness of an early treatment approach.

Experiencing the care of a family member with Crohn's disease: a qualitative study.

OBJECTIVES: To explore the experiences of caregivers living with relatives affected by Crohn's disease (CD) in a context in which the family provides social support. DESIGN: A qualitative study based on a phenomenological approach was conducted through in-depth interviews. SETTING: Participants living in Alicante (Spain) were recruited PARTICIPANTS: Eleven family caregivers of people with CD were interviewed. METHODS: The in-depth interviews took place in the participants' homes and were audio recorded and then transcribed for a qualitative thematic analysis. RESULTS: Five themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy 'with or without me', (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life. CONCLUSION: The findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers' inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers' burdens.

Inflammatory bowel disease patient profiles are related to specific information needs: A nationwide survey.

BACKGROUND: Inflammatory bowel diseases (IBD) is a heterogenous, lifelong disease, with an unpredictable and potentially progressive course, that may impose negative psychosocial impact on patients. While informed patients with chronic illness have improved adherence and outcomes, previous research showed that the majority of IBD patients receive insufficient information regarding their disease. The large heterogeneity of IBD and the wide range of information topics makes a one-size fits all knowledge resource overwhelming and cumbersome. We hypothesized that different patient profiles may have different and specific information needs, the identification of which will allow building personalized computer-based information resources in the future. AIM: To evaluate the scope of disease-related knowledge among IBD patients and determine whether different patient profiles drive unique information needs. METHODS: We conducted a nationwide survey addressing hospital-based IBD clinics. A Total of 571 patients completed a 28-item questionnaire, rating the amount of information received at time of diagnosis and the importance of information, as perceived by participants, for a newly diagnosed patient, and for the participants themselves, at current time. We performed an exploratory factor analysis of the crude responses aiming to create a number of representative knowledge domains (factors), and analyzed the responses of a set of 15 real-life patient profiles generated by the study team. RESULTS: Participants gave low ratings for the amount of information received at disease onset (averaging 0.9/5) and high ratings for importance, both for the newly diagnosed patients (mean 4.2/5) and for the participants themselves at current time (mean 3.5/5). Factor analysis grouped responses into six information-domains. The responses of selected profiles, compared with the rest of the participants, yielded significant associations (defined as a difference in rating of > 0.5 points with a P < 0.05). Patients with active disease showed a higher interest in work-disability, stress-coping, and therapy-complications. Patients newly diagnosed at age > 50, and patients with long-standing disease (> 10 years) showed less interest in work-disability. Patients in remission with mesalamine or no therapy showed less interest in all domains except for nutrition and long-term complications. CONCLUSION: We demonstrate unmet patient information needs. Analysis of various patient profiles revealed associations with specific information topics, paving the way for building patient-tailored information resources.

Investing in workability of patients with inflammatory bowel disease: results of a pilot project Activ84worK (Activate for work).

OBJECTIVES: Inflammatory bowel diseases (IBD) are chronic gastrointestinal conditions mainly affecting young people. Disease symptoms often make it difficult to actively participate in the workplace. The aim of Activ84worK was to stimulate professional activity and reduce absenteeism by removing work-related stress factors and providing patients with more flexible working conditions. PATIENTS AND METHODS: Activ84worK was a collaboration between Abbvie, Mensura, Proximus, SD Worx, and University Hospitals Leuven (UZ Leuven) with the support of the patient association 'Crohn-en Colitis Ulcerosa Vereniging (CCV vzw)' in Flanders, Belgium. Since March 2015, IBD patients whose employer was also willing to participate, were recruited. Informed consent was signed and both the employee and the employer were followed for 6 months. RESULTS: Between March 2015 and October 2016, 70 patients showed interest in the Activ84worK program, 18 were eligible to participate, and 14 completed the program (29% male, 29% private companies). The case studies, based on interviews conducted with participating employees, indicated that removing work-related stress factors resulted in employees feeling much more at ease. Concretely, this led to absence of sick leave for more than 50% of the included patients. A higher degree of workability and focus of employees was achieved, and a decrease in costs of absenteeism was associated with this. CONCLUSION: This pilot project shows that teleworking and flexible working conditions improve labor participation of IBD patients. The results of this project are now used to inspire policy-makers and employers. This initiative should be extended to a larger cohort and tested in other chronic diseases.

Patient-Reported Experiences with a Relicensed Generic: Thioguanine for the Treatment of Inflammatory Bowel Diseases.

BACKGROUND AND AIM: Patient-reported outcomes and experiences are indicative of the impact and the quality of care. Thioguanine, a generic drug initially developed for leukemia, has been explored and relicensed as a certified treatment for patients with inflammatory bowel diseases (IBD). The patients' perception of this treatment has not been evaluated before. In this study, we aimed to assess self-reported experiences with thioguanine for IBD. METHODS: Questionnaires were sent out to members of the Dutch National Crohn's and Colitis patient organization. The Treatment Satisfaction with Medicines Questionnaire (SATMED-Q) was used to address questions regarding the satisfaction and impact of thioguanine therapy on the disease and their daily life. Furthermore, data on demographics, disease and (historical) treatment characteristics were collected. Open-ended questions were used for additional comments to the questionnaire. RESULTS: A total of 173 organization members (73% female) reported to be previous or current users of thioguanine. A total of 74% were satisfied with the effectiveness of thioguanine, whereas 5% were not. Eighty percent of the respondents were satisfied with the quality of care. A good or excellent impact on daily life was reported by 54%. A neutral or bad impact on daily life was reported by 40% and 6%, respectively. Improvement of disease activity was reported by 58%. This remained stable or worsened in 39% and 3%, respectively. CONCLUSION: In this self-report survey, among thioguanine treated patients with IBD who had failed with traditional therapies, 80% reported satisfaction with medical care and 74% with the effectiveness of the therapy. In the evaluation of new or rediscovered therapies, patient-reported outcomes and experiences should be considered as a key instrument.

Effect of Social Support on Psychological Distress and Disease Activity in Inflammatory Bowel Disease Patients.

Background: Psychological distress increases morbidity in ulcerative colitis (UC) and Crohn's disease (CD). We examined whether social support is associated with distress and disease activity. Methods: There were 110 UC and 147 CD patients who completed sociodemography, economic status, disease activity (UC: Patient Simple Clinical Colitis Activity Index (P-SCCAI), CD: Patient Harvey-Bradshaw Index . (P-HBI), Multidimensional Scale of Perceived Social Support (MSPSS), Brief Symptom Inventory with Global Severity Index (GSI) of psychological distress, and 2 health-related quality-of-life scales (SF-36 Physical Health and Mental Health, and Short Inflammatory Bowel Disease Questionnaire (SIBDQ). Analysis included multiple linear regressions and structural equation modeling. Results: Disease activity was mild: UC: P-SCCAI 2.9 ± 3.5, CD: P-HBI 4.7 ± 4.7. Physical Health was better in UC 46.6 ± 11.4 versus CD 43.7 ± 10.9 (P < .02). GSI was lower in UC 0.6 ± 0.7 than CD 0.8 ± 0.7 (P = .002). MSPSS total score was equal in UC (5.9 ± 1.2) and CD (5.9 ± 1.1). MSPSS total correlated with P-SCCAI (correlation coefficient ‒0.240), GSI in UC (‒0.470), and GSI in CD (‒0.333). Economic status correlated with GSI in UC (‒0.408) and CD (‒0.356). MSPSS predicted GSI, Mental Health, and SIBDQ in UC and CD, and predicted P-SCCAI but not P-HBI; economic status predicted all the foregoing. Path analysis depicted GSI as mediating the effects of MSPSS and economic status on disease activity in both UC and CD. MSPSS (UC: ß â€’0.34, CD: ß â€’0.37) and economic status (UC: ß â€’0.38, CD: ß â€’0.22) reduced GSI, which then increased the disease activity (UC: ß 0.56, CD: ß 0.42). Conclusions: Social support and economic status are linked to UC and CD patients' well-being. Interventions addressing these issues should be part of management.

Assessment of Quality of Life in Chinese Patients With Inflammatory Bowel Disease and their Caregivers.

BACKGROUND: Chronic diseases such as inflammatory bowel disease (IBD) usually affect the psychological status and health-related quality of life (HRQOL) of patients and their caregivers. The aim of this study was to evaluate the level of anxiety, depression, and HRQOL and find the risk factors predictive of HRQOL in IBD patients and their caregivers in a Chinese population. METHODS: One hundred four adult patients with IBD, 102 family caregivers, and 99 healthy controls were enrolled. They completed self-administered surveys related to QOL and psychological questionnaires, including the Short Inflammatory Bowel Disease Questionnaire (patients only), the Short Form-36 Health Survey (SF-36), Self-rating Anxiety Scale (SAS), and Self-rating Depression Scale (SDS). RESULTS: Both the mean SAS total score and the mean SDS total score among the patients and the caregivers were found to be significantly higher than those among the general population (P < 0.05). Total SF-36 score was significantly different between the patients and the general population (P = 0.001), and between caregivers and the general population (P = 0.011). The result showed that the total SF-36 score of the patients had a significant negative correlation with SAS score in the patients (P = 0.040), SDS score in the patients (P = 0.004), annual income (P = 0.036), use of biologicals (P = 0.028), frequency of hospitalization in the last year (P = 0.033), and severity of IBD (P = 0.021). The total SF-36 score of the caregivers was significantly and negatively correlated with SDS score in the caregivers (P = 0.010), SDS score in the patients (P = 0.010), use of biologicals (P = 0.013), and frequency of hospitalization in the last year (P = 0.010) of the patients. CONCLUSIONS: A large proportion of IBD patients and their caregivers experience a high level of anxiety and depression and an impaired HRQOL. Higher levels of anxiety and depression, annual income, use of biologicals, higher frequency of hospitalization in the last year, and disease activity were independent predictors of reduced patient HRQOL; higher levels of depression in both caregivers and patients, use of biologicals, and frequency of hospitalization in the last year of the patients were independent predictors of reduced caregiver HRQOL.

Inflammatory Bowel Diseases Can Adversely Impact Domains of Sexual Function Such as Satisfaction with Sex Life.

BACKGROUND: Aspects of sexual health, which can be adversely affected by chronic disease, have been inadequately explored in inflammatory bowel disease (IBD). AIMS: We evaluated patient-reported interest in sexual activity and satisfaction with sex life in a large cohort of IBD patients. METHODS: We conducted a cross-sectional study within the Crohn's and Colitis Foundation Partners Internet cohort. Sequential participants completed a 6-question supplemental online survey to examine sexual interest and satisfaction using the Patient-Reported Outcome Measurement Information System® (PROMIS®) Sexual Function and Satisfaction measures. One-sample t tests were used to compare interest and satisfaction scores to general population norms. RESULTS: Among 2569 individuals, 1639 had Crohn's disease (CD), 930 had ulcerative colitis (UC) or indeterminate colitis, and 71% were women. Mean PROMIS scores for sexual interest were comparable to the general US population in men (CD: 49 and UC: 50 vs. population mean 50) and women (CD: 41 and UC: 40 vs. population mean 42). However, sexual satisfaction scores were lower than the US population in men (CD: 48 and UC: 48 vs. 51) and women (CD: 47 and UC: 46 vs. 49), p < 0.01 for both. Older age, disease activity, depression, anxiety, and pain were associated with lower interest and satisfaction and lowered IBD-specific quality of life. CONCLUSIONS: IBD patients in a large online survey had similar levels of sexual interest but decreased sexual satisfaction compared to the general population. Exploring these sexual health domains during clinical encounters can aid in improving IBD quality of life.

What Do Participants of the Crohn's and Colitis UK (CCUK) Annual York Walk Think of Their Inflammatory Bowel Disease Care? A Short Report on a Survey.

There has been a growing interest in a patient-centered model of care in inflammatory bowel disease; however, no relevant study using a mixed methodology has been conducted to date. Thus, our multidisciplinary group aimed to explore the issue of patient involvement in care among the inflammatory bowel disease community. A mixed-methods anonymous survey was conducted during the Crohn's and Colitis UK annual event. Summary statistics were used to describe the sample, and a simple thematic analysis identified key themes in qualitative responses. There were 64 survey respondents, representing 73% of the total family/friend groups participating (N = 87). Overall, 75% of respondents answered that they had the opportunity to discuss their care with their inflammatory bowel disease practitioner and 81% felt their opinions were taken on board and valued. A clear majority (84%) had at some point been treated by a gastroenterologist. In contrast, less than half (44%) had the opportunity for a dietician consultation and only 28% had the opportunity for a psychologist/counselor consultation. Although satisfaction with inflammatory bowel disease care was high, access to specialty services was concerning. Efforts should be made to provide access to mental health practitioners for those with clinically significant anxiety and/or depression.

Assessment of factors associated with smoking cessation at diagnosis or during follow-up of Crohn's disease.

BACKGROUND AND AIM: Smoking cessation is known to improve the course of Crohn's disease (CD). However, the factors associated with smoking cessation after CD diagnosis have not been well established. METHODS: Clinical characteristics and change in smoking status were evaluated in 445 current smokers at the time of CD diagnosis. Patients were classified into three subgroups based on their final smoking status and time of smoking cessation: non-quitters, quitters at diagnosis, and quitters during follow-up. RESULTS: The overall smoking cessation rate was 55.7% (248 of 445 patients). The diagnosis of CD was the main reason for quitting (41.5%, 103 of 248 patients). Smoking cessation at the time of CD diagnosis was associated with intestinal resection within 3 months from CD diagnosis (odds ratio [OR] 2.355, 95% confidence interval [CI] 1.348-4.116, P = 0.003), light smoking (OR 2.041, 95% CI 1.157-3.602, P = 0.014), and initiation of smoking before 18 years of age (OR 0.570, 95% CI 0.327-0.994, P = 0.047). Light smoking (OR 1.762, 95% CI 1.019-3.144, P = 0.043) and initiation of smoking before 18 years (OR 0.588, 95% CI 0.381-0.908, P = 0.017) were also associated with overall smoking cessation. CONCLUSION: Quitters after CD diagnosis, including quitters at diagnosis and quitters during follow-up, had features distinct from those of non-quitters. Given the motivation at CD diagnosis, a detailed history of smoking habits should be taken and all current smokers should be encouraged to quit smoking at the time of CD diagnosis.

Daily hassles score associates with the somatic and psychological health of patients with Crohn's disease.

OBJECTIVE: To examine the associations of daily hassles with the somatic and psychological health of Crohn's disease (CD) patients. METHOD: A cross-sectional study of 400 self-selected adult CD patients was performed with completion of demographic, medical, and psychosocial questionnaires: economic status; Patient Harvey-Bradshaw Index of disease activity; Daily Hassles Scale (DHS); Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and Short-Form Health Survey (SF-36 Physical and Mental Health) quality of life measures; Brief Symptom Inventory of psychological stress with summary Global Severity Index (GSI); Family Assessment Device; and List of Threatening Life Experiences. Analyses included correlations, regressions, and Sobel test statistic. RESULTS: The patients were aged 38.7 ± 14.1 years, 61% female and 67% working. The Patient Harvey-Bradshaw Index was 5.52 ± 4.87. The DHS was 88.0 ± 23.2, similar in men and women, higher in smokers, and increased with greater disease activity (p < .001). The most commonly reported hassles were time, social, and work. DHS had significant negative correlations with age, disease duration, and economic status and positive correlations with GSI, SF-36, and SIBDQ. An increased Daily Hassles score was associated with reduced SIBDQ (p < .001) and SF-36 Mental Health (p < .001) and increased GSI (p < .001) and Patient Harvey-Bradshaw Index (p < .001). This effect of DHS on Patient Harvey-Bradshaw Index was mediated by GSI (Sobel t = 6.09, p < 0.001). CONCLUSION: Daily hassles in CD patients are shown for the first time to be associated with increased psychological stress and disease activity and reduced quality of life and lower economic status. This has psychotherapeutic implications.

The Burden of Hospital Readmissions among Pediatric Patients with Inflammatory Bowel Disease.

OBJECTIVE: To evaluate the burden and predictors of hospital readmissions among pediatric patients with inflammatory bowel disease using the Nationwide Readmissions Database. STUDY DESIGN: We performed a retrospective cohort study using 2013 Nationwide Readmissions Database. International Classification of Diseases, Ninth Revision, Clinical Modification codes were used to identify patients <18 years with diagnoses of ulcerative colitis (UC) or Crohn's disease (CD). Demographic factors and details of hospitalizations were evaluated using survey procedures in SAS v 9.4 (SAS Institute, Cary, North Carolina). Multivariable logistic regression was used to estimate ORs and 95% CIs of readmission. RESULTS: Among 2733 hospitalizations (63% CD, 37% UC), 611 (22%) patients were readmitted within 90 days of the index hospitalization. Readmission resulted in weighted estimates of 11 440 excess days of hospitalization and total charges of over $107 million. For CD, male sex (aOR 1.36, 95% CI 1.03-1.81) and co-existing anxiety or depression (aOR 1.89, 95% CI 1.06-3.40) were associated with increased readmissions, while patients who underwent surgery had decreased readmissions (aOR 0.40, 95% CI 0.24-0.65). In patients with UC, an index admission of >7 days was associated with increased readmissions (aOR 1.69, 95% CI 1.09-2.62). CONCLUSIONS: Readmission occurs frequently in children with inflammatory bowel disease and is associated with significant cost and resource burdens. Among patients with CD, psychiatric comorbidities such as anxiety and depression are apparent drivers of readmission.

Analysis of factors affecting the quality of life of those suffering from Crohn's disease.

INTRODUCTION: Crohn's disease is an inflammatory bowel disease of unknown etiology. Its chronic nature, as well as symptoms of intestinal and overall significantly impedes the daily functioning of patients. Alternately occurring periods of exacerbation and remission are the cause of reduced quality of life of patients. Understanding the factors that caused the decrease in the quality of life, it allows us to understand the behavior and the situation of the patient and the ability to cope with stress caused by the disease. AIM OF THE STUDY: The aim of the study was to analyze the factors affecting the quality of life of people with Crohn's disease. MATERIAL AND METHODS: The study group consisted of 50 people diagnosed with Crohn's disease. Respondents were treated at the Department of General Surgery and Colorectal Medical University of Lodz and Gastroenterological Clinic at the University Clinical Hospital No. 1 in Lodz. Quality of Life Survey was carried out by a diagnostic survey using a research tool SF-36v2 and surveys of its own design. RESULTS: Analysis of the results demonstrated that the quality of life of patients with Crohn's disease was reduced, especially during exacerbations. Evaluation of the quality of life of respondents in physical terms was slightly higher than in the mental aspect. Higher education subjects and the lack of need for surgical treatment significantly improves the quality of life. CONCLUSIONS: The occurrence of chronic disease reduces the quality of life of respondents. Elderly patients are better able to adapt to the difficult situation caused by the disease. The quality of life of women and men is at a similar level and patients in remission of the disease have a better quality of life of patients during exacerbations.