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Nutrition has been acknowledged as crucial in IBD and is relevant to patients' motives behind food choices, which are affected by health engagement (HE) and food involvement (FI). This study aimed to profile IBD patients according to their levels of health engagement and food involvement to identify patterns of different motives behind food choices, particularly regarding the use of food to regulate mood. A cross-sectional study was conducted with 890 Italian IBD patients who completed an online survey in April 2021. We measured health engagement, food involvement, motives behind food choices, emotional states, and food-related quality of life (Fr-QoL). K-means cluster analysis was performed to identify participants with similar levels of health engagement and food involvement. Four clusters were identified: "Health-conscious (high HE, low FI)", "Balanced (high HE, high FI)", "Hedonist (high FI, low HE)", and "Careless (low FI, low HE)". Clusters with high FI are inclined toward seeking pleasurable food, but when supported with high health engagement, individuals were less prone to use food to manage mood. Groups with higher health engagement demonstrated lower hospitalization rates and relapses and better Fr-QoL. Profiling IBD patients regarding FI and HE could aid clinicians in identifying individuals at greater risk of maladaptive food-related behaviors.
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Comportamento Alimentar , Doenças Inflamatórias Intestinais , Qualidade de Vida , Humanos , Masculino , Feminino , Doenças Inflamatórias Intestinais/psicologia , Adulto , Estudos Transversais , Pessoa de Meia-Idade , Comportamento Alimentar/psicologia , Preferências Alimentares/psicologia , Comportamentos Relacionados com a Saúde , Inquéritos e Questionários , Motivação , Itália , Adulto Jovem , IdosoRESUMO
BACKGROUND AND AIMS: Treatment of ulcerative colitis [UC] requires a patient-centric definition of comprehensive disease control that considers improvements in aspects not typically captured by classical landmark trial endpoints. In an international initiative, we reviewed aspects of UC that affect patients and/or indicate mucosal inflammation, to achieve consensus on which aspects to combine in a definition of comprehensive disease control, using a modified Delphi process. METHODS: The Delphi panel comprised 12 gastroenterologists and one patient advocate. Two gastroenterologists were elected as chairs and did not vote. To inform statements, we asked 18 patients and the panel members about their experiences of remission and reviewed published literature. Panel members voted on statements anonymously in three rounds, with a live discussion before Round 3. Consensus was met ifâ ≥67% of the panel agreed. Statements without consensus in Rounds 1 and 2 were revised or discarded after Round 3. RESULTS: The panel agreed to measure individual patient benefit using a definition of comprehensive disease control that combines aspects currently measured in trials [rectal bleeding, stool frequency, disease-related quality of life, endoscopy, histological inflammatory activity, inflammatory biomarkers, and corticosteroid use] with additional patient-reported symptoms [bowel urgency, abdominal pain, extraintestinal manifestations, fatigue, and sleep disturbance]. The panel agreed on scoring systems and thresholds for many aspects. CONCLUSIONS: Using a robust methodology, we defined comprehensive disease control in UC. Next, we will combine the measurement and scoring of these aspects into a multicomponent tool and will adopt comprehensive disease control as a treatment target in clinical practice and trials.
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Colite Ulcerativa , Humanos , Colite Ulcerativa/diagnóstico , Colite Ulcerativa/tratamento farmacológico , Consenso , Técnica Delphi , Qualidade de Vida , Endoscopia GastrointestinalRESUMO
BACKGROUND: The vaccination status of patients with inflammatory bowel disease (IBD) should be investigated before starting any treatment, and patients should eventually be vaccinated against vaccine-preventable diseases (VPDs). Patients with IBD may have suboptimal vaccination rates. The aim of this study was to evaluate the vaccination coverage, attitude towards vaccinations, and determinants among an Italian cohort of patients with IBD. METHODS: AMICI, the Italian IBD patients' association, sent an anonymous web-based questionnaire in February 2021. Previous vaccination status and patients' attitudes towards vaccinations were recorded. We examined the factors influencing their attitudes using crude and adjusted odds ratios (adjORs) with 95% confidence intervals (CIs). RESULTS: Among the 4039 patients invited, 1252 patients (including 729 women, median age 47.7 [37-58]) completed the questionnaire, with a response rate of 25.3%. Respondents declared being vaccinated against tetanus (74.1%), flu (67.7%; last season), MMR (43.3%), HBV (37.1%), pneumococcus (29.1%), meningitis (20%), HAV (16%), VZV (15.3%), and HPV (7.6%). Complete vaccination history was not remembered by 20.7% of the patients. One thousand one hundred and twelve (88.8%) expressed a positive attitude towards vaccination, 91 (7.3%) were indifferent, and 49 (3.9%) reported being opposed to vaccinations. The belief of a possible return of VPDs with a decline in vaccination coverage rates was the factor most strongly related to a positive attitude towards vaccinations (adjOR 5.67, 95% CI 3.45-9.30, p-value < 0.001). CONCLUSIONS: A low vaccination rate against some VPDs was found among a national cohort of patients with IBD, despite a generally positive attitude towards vaccinations.
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INTRODUCTION: Anti-SARS-CoV-2 vaccine clinical trials did not include patients with immune-mediated conditions such as inflammatory bowel disease [IBD]. We aimed to describe the implementation of anti-SARS-CoV-2 vaccination among IBD patients, patients' concerns, and the side effect profile of the anti-SARS-CoV-2 vaccines, using real-world data. METHODS: An anonymous web-based self-completed survey was distributed in 36 European countries between June and July 2021. The results of the patient characteristics, concerns, vaccination status, and side effect profile were analysed. RESULTS: In all 3272 IBD patients completed the survey, 79.6% had received at least one dose of anti-SARS-CoV-2 vaccine, and 71.7% had completed the vaccination process. Patients over 60 years old had a significantly higher rate of vaccination [pâ <â 0.001]. Patients' main concerns before vaccination were the possibility of having worse vaccine-related adverse events due to their IBD [24.6%], an IBD flare after vaccination [21.1%], and reduced vaccine efficacy due to IBD or associated immunosuppression [17.6%]. After the first dose of the vaccine, 72.4% had local symptoms and 51.4% had systemic symptoms [five patients had non-specified thrombosis]. Adverse events were less frequent after the second dose of the vaccine and in older patients. Only a minority of the patients were hospitalised [0.3%], needed a consultation [3.6%], or had to change IBD therapy [13.4%] after anti-SARS-CoV-2 vaccination. CONCLUSIONS: Although IBD patients raised concerns about the safety and efficacy of anti-SARS-CoV-2 vaccines, the implementation of vaccination in those responding to our survey was high and the adverse events were comparable to the general population, with minimal impact on their IBD.
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Vacinas contra COVID-19 , COVID-19 , Doenças Inflamatórias Intestinais , Idoso , COVID-19/prevenção & controle , Vacinas contra COVID-19/efeitos adversos , Europa (Continente) , Humanos , Doenças Inflamatórias Intestinais/tratamento farmacológico , Internet , Pessoa de Meia-Idade , Inquéritos e Questionários , Vacinação/efeitos adversosRESUMO
BACKGROUND: The frequency of inflammatory bowel disease (IBD) is increased after marriage to an individual with the disease. Importantly, the offspring of these couples have a significant risk for developing the disease. Herein, we aimed to better characterize conjugal IBD. METHODS: A systematic literature search was conducted with predetermined search criteria. Relevant manuscripts reporting on couples with IBD and their offspring were selected. Concomitantly, a cross-sectional survey was conducted of couples where both members were affected with IBD, as well as their offspring, and electronically distributed by patients' associations. RESULTS: We identified 20 reports of IBD in couples, for a total of 68 couples. Of these, 66% were concordant regarding IBD type and 66% were diagnosed after cohabitation. The overall prevalence of IBD in the offspring of these couples was 29%. Our survey identified 58 couples with IBD, with 62% being concordant regarding IBD type; 42.9% were diagnosed prior to cohabitation, in 12.5% one spouse was diagnosed before and the other after cohabitation, and in 44.6% the onset of disease occurred after cohabitation for both. The prevalence of IBD in children born from these couples was 10%. The probability of developing disease in the progeny was 2% at 10 years, 12% at 15 years, and 16% at 20 years of age. CONCLUSIONS: IBD in couples occurs mostly after marriage to an individual with disease or after many years of cohabitation. In a modern cohort, the risk for the progeny was around 16% by the age of 20, lower than previously reported.
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Decision makers are used to consider Out-of-Pocket Expenditure (OOPE) within a health technology assessment framework in order to account for an indicator relying on the level of fairness and on the quality of care of a health system. In this paper, we provide estimates on the determinants of OOPE in Italy by using data coming from an observational cross-sectional study that enrolled a sample of 2526 patients suffering from inflammatory bowel diseases. We explore the association between OOPE and: (1) geographical location; (2) income effects; (3) performances in delivering healthcare. A regression model was used. Individuals' age were in the range of 18-88 (mean 44 ± 14.55). Forty-six percent were females, 54% were married and 19% held a bachelor degree. Ninety-six percent of respondents declared an OOPE >0 whose mean value was 960 ± 950. Individuals belonging to low-income and low-performance regions were more likely to declare an OOPE >0 (99%). Regression findings suggest that increases in OOPE could be considered as a response from patients aiming to compensate for lacks and inefficiencies in the public healthcare offers. Policymakers should consider increases in OOPE in patients with Inflammatory Bowel Diseases (IBDs) as an indicator of poor quality of care and poor fairness.
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Gastos em Saúde , Doenças Inflamatórias Intestinais/epidemiologia , Estudos Transversais , Feminino , Humanos , Doenças Inflamatórias Intestinais/economia , Itália/epidemiologia , Masculino , Medicina Estatal , Inquéritos e QuestionáriosRESUMO
The high cost of biological drugs for patients with inflammatory bowel disease (IBD) considerably impacts on health-care budgets. Since the patent of biological products expired, cheaper biosimilars have entered the market. Available data coming from real-world cohorts and clinical trials indicate that the efficacy and safety of biosimilars is comparable to that of the originator drugs. Treating IBD patients with a biosimilar may be complicated by the risk of the nocebo effect, a negative effect of a pharmacological or non-pharmacological treatment, induced by patients's expectations and unrelated to the physiological action of the treatment. The nocebo effect can negatively affect treatment outcomes and hamper the cost-savings of biosimilars. Reducing the nocebo effect requires a multidisciplinary effort of all health-care providers in charge of biosimilar-treated IBD patients. The aim of the review is to reflect the key messages of an international workshop on this topic, including viewpoints from the perspective of physicians, nurses, psychologists, pharmacists and patients.
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Atitude do Pessoal de Saúde , Medicamentos Biossimilares/uso terapêutico , Doenças Inflamatórias Intestinais/tratamento farmacológico , Efeito Nocebo , Equipe de Assistência ao Paciente , Consenso , Redução de Custos , Humanos , Doenças Inflamatórias Intestinais/economiaAssuntos
Atitude Frente a Saúde , Betacoronavirus , Infecções por Coronavirus , Doenças Inflamatórias Intestinais/psicologia , Pandemias , Pneumonia Viral , COVID-19 , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/prevenção & controle , Saúde Global , Acessibilidade aos Serviços de Saúde , Inquéritos Epidemiológicos , Humanos , Doenças Inflamatórias Intestinais/terapia , Pandemias/prevenção & controle , Relações Médico-Paciente , Pneumonia Viral/epidemiologia , Pneumonia Viral/prevenção & controle , SARS-CoV-2RESUMO
BACKGROUND: Most inflammatory bowel disease patients miss follow-up visits and are non-adherent to therapy due to the lack of an engaging patient-physician relationship. Motivational interviewing is a patient-centred counselling method used to elicit/strengthen motivation towards change. The aim of this study was to assess the role of motivational interviewing in patients affected by inflammatory bowel disease. METHODS: The study included consecutive patients with inflammatory bowel disease presenting for the first consultation (June 2012-February 2013). All consultations were carried out applying the motivational interviewing approach. After each consultation, patients filled out a questionnaire asking demographic data, and their past and current experience. RESULTS: Overall, 23 males (51.1%) and 22 females (48.9%), mean age 36.1±15.2 years, were enrolled. Before and after experiencing the motivational interviewing approach (mean visit duration 41.5±8.7min) "overall satisfaction rate", "physician's communication skills", and "perceived empathy" were 60% vs 100%, 40% vs 95.6%, and 40% vs 100%, respectively. Satisfaction was lower in patients affected by indeterminate colitis (p=0.004), and of younger age (p=0.02). CONCLUSION: The motivational interview approach is appreciated by inflammatory bowel disease patients. Despite being time-consuming, the motivational interview appears considerably worthwhile at the first visit and in younger patients. Motivational interviewing can help physicians to deal with their patients, moving from "cure" to "care".