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  • Sexual quality of life in inflammatory bowel disease: A multicenter, national-level study
    Publication . Roseira, Joana; Magro, Fernando; Fernandes, Samuel; Simoes, Carolina; Portela, Francisco; Vieira, Ana Isabel; Patita, Marta; Leal, Carina; Lago, Paula; Caldeira, Paulo; Gago, Tania; Currais, Pedro; Dias, Claudia Camila; Santiago, Mafalda; Dias, Sandra; Sousa, Helena Tavares
    Background: The impact of inflammatory bowel disease (IBD) on sexual health is a leading concern among patients. Most studies focus on sexual dysfunction rather than patient-perceived sexual quality of life (SQoL). We aimed to assess SQoL in IBD patients compared with healthy controls. Methods: This is a multicenter, cross-sectional study of IBD patients (n = 575 with Crohn's disease and n = 294 with ulcerative colitis), compared with healthy controls (n = 398), that used an anonymous self-administered questionnaire. This multimodal questionnaire included sociodemographic data and 4 validated instruments: Short IBD Questionnaire, Social Desirability Scale, Sexual QoL Questionnaire-Male/Female, Nine-item Patient Health Questionnaire. Results: Inflammatory bowel disease patients reported lower SQoL (men: 77.29 vs 83.83; P < 0.001; women: 70.40 vs 81.63; P < 0.001) compared with controls. Among IBD patients, SQoL was positively correlated with health-related quality of life (HRQoL) and negatively correlated with depression symptoms. Perianal disease was associated with lower HRQoL and higher incidence of depression, but only impacted SQoL in men. In linear regression analysis for men, SQoL was associated with age, marital status, and depression (beta, -2.101; 95% confidence interval [CI], -2.505 to -1.696; P < 0.001). In women, SQoL was associated with depression (beta, -1.973; 95% CI, -2.313 to -1.632; P < 0.001) only. Conclusions: Patients with IBD had impaired SQoL compared with healthy controls. Age, widow status, and depression were independent predictors of SQoL in men with IBD, whereas in women depression was the only independent predictor. Emotional and self-esteem issues were the main concerns reported by IBD patients regarding sexual health.
  • Crossing barriers: the burden of inflammatory bowel disease across Western Europe
    Publication . Kumar, Aditi; Yassin, Nuha; Marley, Alexandra; Bellato, Vittoria; Foppa, Caterina; Pellino, Gianluca; Myrelid, Pär; Millan, Monica; Gros, Beatriz; Avellaneda, Nicolas; Catalan-Serra, Ignacio; El-Hussuna, Alaa; Cunha Neves, João A.; Roseira, Joana; Cunha, Miguel F.; Verstockt, Bram; Bettenworth, Dominik; Mege, Diane; Brookes, Matthew J.
    An estimated 2.5-3 million individuals (0.4%) in Europe are affected by inflammatory bowel disease (IBD). Whilst incidence rates for IBD are stabilising across Europe, the prevalence is rising and subsequently resulting in a significant cost to the healthcare system of an estimated 4.6-5.6 billion euros per year. Hospitalisation and surgical resection rates are generally on a downward trend, which is contrary to the rising cost of novel medication. This signifies a large part of healthcare cost and burden. Despite publicly funded healthcare systems in most European countries, there is still wide variation in how patients receive and/or pay for biologic medication. This review will provide an overview and discuss the different healthcare systems within Western Europe and the barriers that affect overall management of a changing IBD landscape, including differences to hospitalisation and surgical rates, access to medication and clinical trial participation and recruitment. This review will also discuss the importance of standardising IBD management to attain high-quality care for all patients with IBD.
  • Methylation patterns in dysplasia in inflammatory bowel disease patients
    Publication . Rosa, Isadora; Silva, Patricia; da Mata, Sara; Magro, Fernando; Carneiro, Fatima; Peixoto, Armando; Silva, Marco; Sousa, Helena Tavares; Roseira, Joana; Parra, Jose; Barosa, Rita; Vieira, Ana; Brito, Maria Jos; Lago, Paula; Coelho, Andre; Moleiro, Joana; da Silva, Joao Pereira; Fonseca, Ricardo; Albuquerque, Cristina; Dias Pereira, A.
    Background and aims:Inflammatory Bowel Disease (IBD) with colonic involvement increases colorectal cancer risk. However, the distinction between IBD related and sporadic dysplasia in IBD patients is difficult. Some data favors the importance of abnormal DNA methylation in IBD-related carcinogenesis. We aimed to define methylation patterns in patients with colonic cancer or dysplasia diagnosis following an IBD diagnosis. Methods:Multicentric cross-sectional study-91 samples from colonic mucosa with/without dysplasia from 9 patients with IBD-related dysplasia/cancer and 26 patients with IBD and sporadic dysplasia/cancer were included. Methylation patterns of CpG islands in the promoter regions of 67 genes were studied by Methylation-specific Multiplex Ligation-dependent Probe Amplification. Results:Mean age at IBD diagnosis: 42 +/- 16 years;at dysplasia diagnosis: 56 +/- 14 years. Twenty-ninepatients had ulcerative colitis. Twenty-five patients had at least 1 lesion endoscopically described as adenoma-like, 4 at least 1 non-adenoma like, 3 had cancer and 3 had dysplasia in flat mucosa. No patient had both adenoma-like and non-adenoma-like lesions. Patients with an IBD-related lesion were significantly younger at IBD diagnosis (p = .003) and at dysplasia/cancer diagnosis (p = .039). Promoter methylation ofIGF2, RARB, ESR1, CHFR, CDH13, WT1, GATA5, WIF1genes was significantly associated to dysplasia/cancer; methylation ofMSH6, TIMP3was significantly associated to IBD-related dysplasia/cancer. Promoter methylation ofMSH6, MSH3, RUNX3, CRABP1, TP73, RARB, CDH13, PAX5, WT1, THBS1, TP53, SFRP1, WIF1, APAF1,BCL2genes was significantly associated to active IBD. Conclusions:Methylation analysis, namely ofMSH6, may contribute to the classification of dysplastic lesions in IBD- to be further tested in prospective studies.
  • Food-related quality of life and its predictors in inflammatory bowel disease
    Publication . Oliveira, Raquel; Martins, Viviana; Sousa, Helena Tavares; Roseira, Joana
    Background Inflammatory bowel disease (IBD) is associated with dietary restrictions and food- and drink-driven daily life limitations. Food-related quality of life (FR-QoL) is still an under-addressed issue in IBD. Aim We aimed to study determinants of FR-QoL in an IBD cohort, namely objective measures of disease activity. Methods A cross-sectional case-control study was conducted in a Tertiary Hospital, including adult patients with IBD (cases) and blood donors or subjects referred for colorectal polypectomies (controls). Participants answered an anonymous multimodal questionnaire including sociodemographic and clinical data, the validated FR-QoL-29, and the SIBDQ tools. Patients' disease activity was previously assessed by a physician using symptom-based scores and biomarkers (Harvey-Bradshaw index, partial Mayo score, fecal calprotectin). Results A total of 239 patients with IBD and 126 controls were included. Patients with active disease had poorer FR-QoL than patients in remission (80.0 [56.0-99.0] vs. 103.5 [81.0-129.9], p < 0.001). Still, patients with IBD had significantly lower FR-QoL compared with controls (99.0 [76.0-126.0] vs. 126.0 [102.8-143.0], p < 0.001), irrespective of disease activity. FR-QoL correlated with health-related quality of life, measured by SIBDQ (r = 0.490, p < 0.001), and was significantly impaired by patients' depressive humor (84.0 [61.0-112.0] vs. 108.0 [88.0-130.5], p < 0.001). Globally, FR-QoL compromise was mostly related to persistent worries about food, concerns about food-related symptoms, and life disruption due to eating and drinking. Conclusions Patients with IBD showed significant FR-QoL impairment, irrespective of disease type and activity. Related psychosocial factors, such as the patient's affective status and fear around eating, warrant a need for a multidisciplinary approach to IBD, including tailored nutritional counseling.
  • Food-related quality of life in inflammatory bowel disease: translation and validation of food-related quality of life to the portuguese language (FR-QoL-29-Portuguese)
    Publication . Oliveira, Raquel; Martins, Viviana Maria Varajão; Teixeira, Laetitia; Sousa, Helena Tavares; Roseira, Joana
    Food-related quality of life (FR-QoL) has been shown to be an important patient-reported outcome in inflammatory bowel disease (IBD). We aimed to translate and validate a Portuguese version of the FR-QoL-29. Methods: This was a case-control cross-sectional study undertaken at a tertiary hospital. After obtaining the original authors' authorization, both forward and backward translations of the original FR-QoL-29 were performed by bilingual researchers. After an IBD expert's revision and the input of a small group of patients, a final version was obtained. Portuguese IBD patients were prospectively recruited from the outpatient clinic of a tertiary hospital and completed the questionnaire at two timepoints (0 and 4 weeks). Reliability (internal consistency, test-retest, and intraclass correlation [ICC]), validity (content and convergent validity, and hypothesis testing using Spearman's correlations), and responsiveness (Student t tests) were analysed. Results: 239 patients (mean age 50.1 [SD = 15.3 years], 56.5% female) and 87 (36.4%) patients answered the questionnaire at the first and second timepoints, respectively; 126 controls answered the questionnaire. Overall, the FR-QoL-29-Portuguese showed excellent internal consistency (Cronbach's alpha = 0.97) and good test-retest reliability (ICC = 0.78 [95% CI: 0.64-0.85]). FR-QoL moderately correlated with health-related quality of life, measured by the SIBDQ-PT (R = 0.49; p < 0.05). Lastly, the questionnaire revealed appropriate responsiveness when patients reported an overall improvement in general well-being (mean improvement 25.88 [SD = 32.50]; p < 0.05). Discussion/Conclusions: We present an adaptation and validation of the FR-QoL-29 tool for Portuguese IBD patients. The FR-QoL-29-Portuguese is a reliable and valid tool shown to be responsive to changes in general well-being.