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1.
Int J Colorectal Dis ; 39(1): 110, 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39009899

RESUMO

PURPOSE: Ulcerative colitis (UC) is an inflammatory bowel disease with an unclear etiology that can lead to irreversible changes in distal colonic function in chronic patients. This study investigated anorectal function in recurrent UC patients and identified influencing factors. METHODS: This prospective study enrolled 33 recurrent UC patients and 40 newly diagnosed patients from January 2019 to December 2022. Data collection included clinical records, scores, and anorectal function assessments. Regression analyses were used to identify factors impacting anorectal function. RESULTS: Recurrent UC patients had higher baseline CRP and fecal calprotectin levels, increased anxiety and depression, and more severe fecal incontinence. They also had lower BMIs, serum Hb and albumin (ALB) levels, and Inflammatory Bowel Disease Questionnaire scores than did initial-onset UC patients. Multivariate linear regression analysis revealed that long disease duration (coef. - 0.376, P < 0.001) and high fecal calprotectin level (coef. - 0.656, P < 0.001) independently influenced the initial sensation threshold in recurrent UC patients. Additionally, high fecal calprotectin (coef. - 0.073, P = 0.013) and high Zung Self-Rating Anxiety Scale score (coef. - 0.489, P = 0.001) were identified as two independent determinants of the defecation volume threshold. For the defecation urgency threshold, the independent factors included high disease duration (coef. - 0.358, P = 0.017) and high fecal calprotectin level (coef. - 0.499, P = 0.001). Similarly, the sole independent factor identified for the maximum capacity threshold was high fecal calprotectin (coef. - 0.691, P = 0.001). CONCLUSION: Recurrent UC patients had increased rectal sensitivity and compromised anorectal function, which significantly impacted quality of life. Proactively managing the disease, reducing UC relapses, and addressing anxiety are effective measures for improving anorectal function in these patients.


Assuntos
Canal Anal , Colite Ulcerativa , Fezes , Complexo Antígeno L1 Leucocitário , Reto , Recidiva , Humanos , Colite Ulcerativa/fisiopatologia , Colite Ulcerativa/psicologia , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Complexo Antígeno L1 Leucocitário/análise , Complexo Antígeno L1 Leucocitário/metabolismo , Fezes/química , Canal Anal/fisiopatologia , Reto/fisiopatologia , Defecação/fisiologia , Estudos Prospectivos , Incontinência Fecal/fisiopatologia , Incontinência Fecal/etiologia , Incontinência Fecal/psicologia , Ansiedade/fisiopatologia
2.
PLoS One ; 19(6): e0301672, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38857292

RESUMO

OBJECTIVE: An improved understanding of the causes and experience of diagnostic delay in Inflammatory Bowel Disease (IBD). METHODS: Framework analysis of semi-structured interviews with 20 adults with IBD. RESULTS: Participants' prior knowledge of normal bowel function/IBD was limited. Symptoms were sometimes misattributed to mild/transient conditions or normalised until intolerable. Family pressures, work, education, mistrust of doctors, fear and embarrassment could exacerbate delays. Poor availability of face-to-face appointments deterred people from seeing a GP. Patients feared that by the time they got to see their GP, their symptoms would have resolved. Patients instead self-managed symptoms, but often regretted not seeking help earlier. Limited time in consultations, language barriers, embarrassment, and delays in test results subsequently delayed specialist referrals. GPs misattributed symptoms to other conditions due to atypical or non-specific presentations, leading to reduced trust in health systems. Patients complained of poor communication, delays in accessing test results, appointments, and onward referrals-all associated with clinical deterioration. GPs were sometimes unable to 'fast-track' patients into specialist care. Consultations and endoscopies were often difficult experiences for patients, especially for non-English speakers who are also less likely to receive information on mental health support and the practicalities of living with IBD. CONCLUSIONS: The framework analysis demonstrates delay in the diagnosis of IBD at each stage of the patient journey. RECOMMENDATIONS: Greater awareness of IBD amongst the general population would facilitate presentation to healthcare services through symptom recognition by individuals and community advice. Greater awareness in primary care would help ensure IBD is included in differential diagnosis. In secondary care, greater attention to the wider needs of patients is needed-beyond diagnosis and treatment. All clinicians should consider atypical presentations and the fluctuating nature of IBD. Diagnostic overshadowing is a significant risk-where other diagnoses are already in play the risk of delay is considerable.


Assuntos
Colite Ulcerativa , Doença de Crohn , Diagnóstico Tardio , Pesquisa Qualitativa , Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Doença de Crohn/diagnóstico , Doença de Crohn/psicologia , Colite Ulcerativa/diagnóstico , Colite Ulcerativa/psicologia , Idoso , Encaminhamento e Consulta , Adulto Jovem , Relações Médico-Paciente
3.
Nutrients ; 16(12)2024 Jun 11.
Artigo em Inglês | MEDLINE | ID: mdl-38931181

RESUMO

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.


Assuntos
Dieta , Doenças Inflamatórias Intestinais , Estado Nutricional , Qualidade de Vida , Índice de Gravidade de Doença , Humanos , Estudos de Casos e Controles , Masculino , Feminino , Adulto , Doenças Inflamatórias Intestinais/psicologia , Pessoa de Meia-Idade , Comportamento Alimentar/psicologia , Inquéritos e Questionários , Colite Ulcerativa/psicologia , Ingestão de Energia , Adulto Jovem
4.
J Patient Rep Outcomes ; 8(1): 54, 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38819757

RESUMO

OBJECTIVES: Bowel urgency is an impactful core symptom of ulcerative colitis (UC). Patient-reported outcome (PRO) questionnaires have been developed and used to assess the patient experience of this important symptom. The objective of this paper is to present evidence from qualitative research conducted to support the use and interpretation of select PRO questionnaires to assess bowel urgency related to the UC patient experience. METHODS: Qualitative interviews were conducted with ten adults with a clinician-confirmed diagnosis of moderately to severely active UC. Interviews aimed to document patient interpretation of modified recall periods for the Urgency Numeric Rating Scale (Urgency NRS), two global assessments (i.e., the Patient Global Impression of Severity [PGIS] and Patient Global Impression of Change [PGIC]), and four items (Items 11, 16, 23, and 26) of the Inflammatory Bowel Disease Questionnaire (IBDQ), and explore the patient perspective of meaningful change on these questionnaires. RESULTS: Both modified Urgency NRS versions (with 7-day or 3-day recall period) were interpreted as intended by most patients (≥ 88.9%), and slightly more than half of patients (60.0%) reported that the 7-day recall period was more relevant to their bowel urgency experience. Patients reported thinking of bowel urgency (≥ 80.0%) or bowel urgency-related accidents (70.0% of patients) when interpreting the global assessments and IBDQ items. Most patients reported a 1- to 3-point change as the smallest meaningful improvement that would be meaningful on the Urgency NRS (similar to findings on other questionnaires). CONCLUSION: Adults with UC can understand and respond to the Urgency NRS with modified recall periods (i.e., 7-day or 3-day), interpret the conceptual content of the PGIS, PGIC, and select IBDQ items to be inclusive of bowel urgency and bowel urgency-related accidents, and select answers representing meaningful improvements on the Urgency NRS, PGIS, PGIC, and IBDQ item response scales. These results further contribute patient-centered data to existing UC and bowel urgency research.


Assuntos
Colite Ulcerativa , Medidas de Resultados Relatados pelo Paciente , Pesquisa Qualitativa , Humanos , Colite Ulcerativa/diagnóstico , Colite Ulcerativa/psicologia , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Inquéritos e Questionários , Índice de Gravidade de Doença , Entrevistas como Assunto , Qualidade de Vida/psicologia , Idoso
5.
Colorectal Dis ; 26(6): 1184-1190, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38609339

RESUMO

AIM: There is ongoing debate about whether ileal pouch-anal anastomosis needs temporary diversion at the time of construction. Stomas may reduce risk for anastomotic leak (AL) but are also associated with complications, emergency department visits and readmissions. This treatment trade-off study aims to measure patients' preferences by assessing the absolute risk of AL and pouch failure (PF) they are willing to accept to avoid a diverting ileostomy. METHODS: Fifty-two patients with ulcerative colitis, with or without previous pouch surgery, from Mount Sinai Hospital, Toronto, participated in this study. Standardized interviews were conducted using the treatment trade-off threshold technique. An online anonymous survey was used to collect patient demographics. We measured the absolute increased risk in AL and PF that patients would accept to undergo modified two-stage surgery as opposed to traditional three-stage surgery. RESULTS: Thirty-two patients (mean age 38.7 ± 15.3) with previous surgery and 20 patients (mean age 39.5 ± 11.9) with no previous surgery participated. Patients were willing to accept an absolute increased leak rate of 5% (interquartile range 4.5%-15%) to avoid a diverting ileostomy. Similarly, patients were willing to accept an absolute increased PF rate of 5% (interquartile range 2.5%-10%). Younger patients, aged 21-29, had lower tolerance for PF, accepting an absolute increase of only 2% versus 5% for patients older than 30 (P = 0.01). CONCLUSION: Patients were willing to accept a 5% increased AL rate or PF rate to avoid a temporary diverting ileostomy. This should be taken into consideration when deciding between modified two- and three-stage pouch procedures.


Assuntos
Fístula Anastomótica , Colite Ulcerativa , Bolsas Cólicas , Ileostomia , Preferência do Paciente , Proctocolectomia Restauradora , Humanos , Colite Ulcerativa/cirurgia , Colite Ulcerativa/psicologia , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Preferência do Paciente/estatística & dados numéricos , Ileostomia/métodos , Ileostomia/efeitos adversos , Ileostomia/psicologia , Proctocolectomia Restauradora/métodos , Proctocolectomia Restauradora/efeitos adversos , Fístula Anastomótica/etiologia , Fístula Anastomótica/prevenção & controle , Bolsas Cólicas/efeitos adversos , Inquéritos e Questionários , Assistência Centrada no Paciente
6.
J Pediatr Gastroenterol Nutr ; 78(6): 1287-1296, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38629478

RESUMO

OBJECTIVES: Prior studies on the psychological well-being in pediatric inflammatory bowel disease (PIBD) have reported controversial results. Our aim was to compare the psychological well-being and lifestyle factors in patients with PIBD and their controls and to assess the role of contributing disease characteristics. METHODS: This cross-sectional study included 60 PIBD patients aged 6-17 years (26 with Crohn's disease [CD], 34 with ulcerative colitis [UC] or unclassified colitis [IBD-U]) from two university hospitals in Finland, and their age- and sex-matched healthy controls. Psychological well-being was assessed with three measures: a questionnaire on overall psychological well-being (PSWB) and for adolescents also Beck Depression Inventory (BDI Ia) and Perceived Stress Scale (PSS). In addition to disease characteristics and pain, we assessed physical activity, sleep, screen time, and social well-being. RESULTS: Controls were more likely of stressing more (odds ratio [OR] = 3.67, 95% confidence interval [95% CI] 95% CI = 1.02-13.14), but other measures of psychological well-being did not differ statistically significantly between patients and controls. In CD, a clinically more active disease associated with inferior psychological well-being in adolescents (BDI [ρ = 0.63, p = 0.021], PSS [ρ = 0.70, p = 0.008], PSWB [ρ = 0.56, p = 0.049]). Longer time from diagnosis correlated with better psychological well-being on BDI (ρ = -0.39, p = 0.024) and PSS (ρ = -0.38, p = 0.034). Lifestyle was more sedentary in PIBD (less physical activity in children OR = 0.82, 95% CI = 0.68-0.99 and more screen time in adolescents OR = 1.18, 95% CI = 1.00-1.40). CONCLUSION: Although the clinical features of PIBD are potentially a burden for psychological well-being, many young patients cope well with their disease. Individual variation in well-being is remarkable, making supportive measures challenging.


Assuntos
Colite Ulcerativa , Doença de Crohn , Humanos , Adolescente , Feminino , Masculino , Estudos Transversais , Criança , Inquéritos e Questionários , Finlândia/epidemiologia , Doença de Crohn/psicologia , Colite Ulcerativa/psicologia , Estudos de Casos e Controles , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologia , Estilo de Vida , Depressão/epidemiologia , Depressão/psicologia , Doenças Inflamatórias Intestinais/psicologia , Saúde Mental , Tempo de Tela , Sono , Escalas de Graduação Psiquiátrica , Qualidade de Vida , Bem-Estar Psicológico
7.
Dig Dis Sci ; 69(5): 1636-1648, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38493273

RESUMO

BACKGROUND: The real-world application of STRIDE-II treatment targets to identify whether disease control is optimal in Crohn's disease (CD) and ulcerative colitis (UC) is not well known. AIMS: This study aimed to estimate proportions of patients with suboptimally controlled CD and UC in real-world Canadian healthcare settings and the impact on quality of life (QoL). METHODS: The noninterventional, multicenter, observational IBD-PODCAST Canada study comprised a single study visit involving routine assessments, patient- and clinician-completed questionnaires, and a retrospective chart review. Primary outcomes were proportions of patients with STRIDE-II-based red flags indicative of suboptimal disease control and mean ± standard deviation Short Inflammatory Bowel Disease Questionnaire (SIBDQ) scores. Secondary outcomes included proportions of patients and clinicians subjectively reporting suboptimal control. RESULTS: Among 163 enrolled patients from 10 sites, 45/87 patients with CD (51.7%; 95% CI: 40.8%, 62.6%) and 33/76 patients with UC (43.3%; 95% CI: 32.1%, 55.3%) had suboptimal disease control based on STRIDE-II criteria. Suboptimal control was subjectively reported at lower proportions (patients: CD, 15.0%; UC, 18.6%; clinicians: CD, 19.5%; UC, 25.0%). Numerically lower SIBDQ scores were observed with suboptimal control (CD, 43.0 ± 10.8; UC, 42.5 ± 12.0) than with optimal control (CD, 58.2 ± 7.2; UC, 57.8 ± 6.6). CONCLUSIONS: Approximately 50% (CD) and 40% (UC) of patients from real-world Canadian practices had suboptimal disease control based on STRIDE-II criteria. Suboptimal control was underestimated by patients and clinicians and accompanied by reduced QoL, suggesting further efforts to implement STRIDE-II treat-to-target strategies are needed.


Assuntos
Doença de Crohn , Qualidade de Vida , Humanos , Feminino , Masculino , Canadá/epidemiologia , Adulto , Doença de Crohn/psicologia , Pessoa de Meia-Idade , Colite Ulcerativa/psicologia , Colite Ulcerativa/terapia , Estudos Retrospectivos , Inquéritos e Questionários
8.
Qual Life Res ; 33(5): 1373-1387, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38438664

RESUMO

PURPOSE: To identify symptoms and their impacts on daily functioning and health-related quality of life (HRQoL) experienced by adult patients with ulcerative colitis (UC) and evaluate patient-reported outcome (PRO) measures for UC clinical studies. METHODS: A conceptual model of symptoms and impacts of UC were developed from a literature review. PRO measures were identified from the literature, clinical trials databases, health technology assessment submissions, and regulatory label claims, and were selected for conceptual analysis based on disease specificity and use across information sources. PRO measures covering the most concepts when mapped against the conceptual model were assessed for gaps in psychometric properties using Food and Drug Administration (FDA) guidance and consensus-based standards for the selection of health measurement instruments (COSMIN) criteria. RESULTS: The conceptual model grouped the 52 symptom concepts and 72 proximal and distal impacts into eight, two, and five dimensions, respectively. Of 65 PRO measures identified, eight underwent conceptual analysis. Measures covering the most concepts and assessed for psychometric properties were the Inflammatory Bowel Disease Questionnaire, Symptoms and Impacts Questionnaire for UC, UC-PRO symptoms modules, UC-PRO impact modules, and Crohn's and UC Questionnaire; all had good or excellent support for content validity. The UC-PRO Signs and Symptoms fully met FDA guidance and COSMIN criteria for content validity and most psychometric properties. CONCLUSION: Existing PRO measures assess concepts relevant to patients with UC, but all PRO measures reviewed require further psychometric evaluation to demonstrate they are fit for purpose.


Assuntos
Colite Ulcerativa , Medidas de Resultados Relatados pelo Paciente , Psicometria , Qualidade de Vida , Humanos , Colite Ulcerativa/psicologia , Inquéritos e Questionários/normas
9.
Nutr Clin Pract ; 39(4): 881-887, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38326229

RESUMO

BACKGROUND: Inflammatory bowel disease (IBD) is a chronic, autoimmune disorder that affects the gastrointestinal tract. Disordered eating describes irregular eating behaviors that may be a precursor to an eating disorder diagnosis. Higher rates of disordered eating have been described in chronic diseases. Screening for disordered eating is not performed in pediatric patients with IBD. The goal of this longitudinal study was to use the Eating Attitudes Test (EAT-26) to screen pediatric patients with IBD for disordered eating, estimate our population's prevalence, identify potential risk factors, and correlate positive EAT-26 screen results with evaluation in adolescent medicine clinic. METHODS: Eighty patients with IBD between 10 and 21 years completed the EAT-26 questionnaire during gastroenterology clinic visit. Disease activity was measured using Pediatric Ulcerative Colitis Activity Index (PUCAI) and Pediatric Crohn's Disease Activity Index (PCDAI). Patients also rated their own disease activity on a numerical scale. RESULTS: Five patients had a positive EAT-26 screen and were evaluated in the adolescent medicine clinic. One hundred percent of those who screened positive were diagnosed with a concomitant eating disorder once evaluated. Only 20% of those who screened positive had active IBD. Higher weight, body mass index, and patient perception of disease activity were associated with increased EAT-26 score. CONCLUSION: Pediatric patients with IBD are at risk for disordered eating, with a prevalence of 6% in our population, which is twice the prevalence of disordered eating in the general population. The EAT-26 questionnaire is a feasible tool to screen pediatric IBD patients for disordered eating.


Assuntos
Transtornos da Alimentação e da Ingestão de Alimentos , Doenças Inflamatórias Intestinais , Humanos , Adolescente , Feminino , Masculino , Criança , Inquéritos e Questionários , Transtornos da Alimentação e da Ingestão de Alimentos/epidemiologia , Transtornos da Alimentação e da Ingestão de Alimentos/psicologia , Estudos Longitudinais , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/complicações , Doenças Inflamatórias Intestinais/epidemiologia , Adulto Jovem , Prevalência , Fatores de Risco , Comportamento Alimentar/psicologia , Índice de Gravidade de Doença , Doença de Crohn/psicologia , Doença de Crohn/complicações , Doença de Crohn/epidemiologia , Índice de Massa Corporal , Colite Ulcerativa/psicologia , Colite Ulcerativa/complicações
10.
United European Gastroenterol J ; 12(3): 374-389, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38315582

RESUMO

AIMS: To investigate the current situation of mental psychology and quality of life (QoL) in patients with inflammatory bowel disease (IBD) in China, and analyze the influencing factors. METHODS: A unified questionnaire was developed to collect clinical data on IBD patients from 42 hospitals in 22 provinces from September 2021 to May 2022. Multivariate Logistic regression analysis was conducted, and independent influencing factors were screened out to construct nomogram. The consistency index (C-index), receiver operating characteristic (ROC) curve, area under the ROC curve (AUC), calibration curve, and decision curve analysis (DCA) were used to evaluate the discrimination, accuracy, and clinical utility of the nomogram model. RESULTS: A total of 2478 IBD patients were surveyed, including 1371 patients with ulcerative colitis (UC) and 1107 patients with Crohn's disease (CD). Among them, 25.5%, 29.7%, 60.2%, and 37.7% of IBD patients had anxiety, depression, sleep disturbance and poor QoL, respectively. The proportion of anxiety, depression, and poor QoL in UC patients was significantly higher than that in CD patients (all p < 0.05), but there was no difference in sleep disturbance between them (p = 0.737). Female, higher disease activity and the first visit were independent risk factors for anxiety, depression and sleep disturbance in IBD patients (all p < 0.05). The first visit, higher disease activity, abdominal pain and diarrhea symptoms, anxiety, depression and sleep disturbance were independent risk factors for the poor QoL of patients (all p < 0.05). The AUC value of the nomogram prediction model for predicting poor QoL was 0.773 (95% CI: 0.754-0.792). The calibration diagram of the model showed that the calibration curve fit well with the ideal curve, and DCA showed that the nomogram model could bring clinical benefits. CONCLUSION: IBD patients have higher anxiety, depression, and sleep disturbance, which affect their QoL. The nomogram prediction model we constructed has high accuracy and performance when predicting QoL.


Assuntos
Colite Ulcerativa , Doença de Crohn , Doenças Inflamatórias Intestinais , Transtornos do Sono-Vigília , Feminino , Humanos , China/epidemiologia , Colite Ulcerativa/diagnóstico , Colite Ulcerativa/epidemiologia , Colite Ulcerativa/psicologia , Doença de Crohn/diagnóstico , Doença de Crohn/epidemiologia , Doença de Crohn/psicologia , Doenças Inflamatórias Intestinais/epidemiologia , Doenças Inflamatórias Intestinais/psicologia , Qualidade de Vida , Transtornos do Sono-Vigília/epidemiologia , Transtornos do Sono-Vigília/etiologia , Transtornos do Sono-Vigília/diagnóstico , Masculino
11.
Inflamm Bowel Dis ; 30(4): 538-546, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-37260357

RESUMO

BACKGROUND: The impact of inflammatory bowel disease (IBD) on caregivers has rarely been investigated. Our work aims to explore the burden of IBD on the different aspects of caregivers' lives. METHODS: We conducted an online survey via the social network of the French IBD patient organization addressed to patients' caregivers who were asked to fill in a questionnaire covering the impact of the disease on different aspects of their lives. Impacts were measured by a visual analog scale (VAS). A VAS score ≥5 of 10 was considered significantly high. We then performed uni- and multivariate analyses of predictors of higher impact on parents and partners, separately. RESULTS: A total of 853 caregivers participated, predominantly women (77%). The mean age was 48.5 years. Their relationship with the patient was mainly parents in 57.1% and partners in 30.6%. The type of IBD was Crohn's disease in 63% and ulcerative colitis in 35%. The psychological burden was the highest among parents and was mainly correlated with a lack of knowledge about IBD and professional compromise (P < .05). The impact on leisure was the highest among partners and was affected by psychological, sexual, and professional burdens (P < .05). About 50% of partners experienced an absent sexual relationship for weeks/months and decreased libido regardless of IBD type. Professional impact was greater in parents compared with partners, and 36% of caregivers needed work arrangements. CONCLUSIONS: IBD has a high impact on different aspects of life of patients' caregivers. Therefore, interventions to reduce the disease burden in this population are needed.


Caregivers of patients with inflammatory bowel disease go through many psychological, social, and professional difficulties. Implementing adequate psychosocial interventions may improve their quality of life.


Assuntos
Colite Ulcerativa , Doença de Crohn , Doenças Inflamatórias Intestinais , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Cuidadores/psicologia , Qualidade de Vida , Doenças Inflamatórias Intestinais/psicologia , Doença de Crohn/psicologia , Colite Ulcerativa/psicologia , Inquéritos e Questionários
12.
J Psychiatr Res ; 169: 231-237, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-38048672

RESUMO

BACKGROUND: Crohn's disease (CD) and ulcerative colitis (UC) are characterized by chronic intestinal and systemic inflammation. The extraintestinal sequelae of inflammatory bowel disease (IBD) are major contributors to disease morbidity and significantly affect patients' quality of life. Here, we evaluated the association between IBD and subsequent depression or anxiety disorder in a large outpatient collective from Germany. METHODS: 15,864 individual IBD patients (CD: n = 6,791, UC: n = 9073) and 15,864 nearest neighbor propensity score matched patients without IBD were included from the Disease Analyzer database (IQVIA). Diagnoses of depression and anxiety disorders were compared between IBD and non-IBD patients during a five-year follow-up period using Kaplan-Meier estimators and Cox-regression models. RESULTS: After 5 years of follow-up, depression was diagnosed in 14.4% of CD patients versus 10.2% of matched pairs (p < 0.001) and in 13.1% of UC patients versus 10.1% of matched pairs (p < 0.001). In line, the incidence of anxiety order was significantly higher among CD (4.7% vs. 4.4%, p = 0.009) and UC patients (4.3% vs. 3.5%, p = 0.005). Regression analysis confirmed a significant association between IBD and both mental conditions (Hazard Ratio (HR)CD/depression: 1.40, HRUC/depression: 1.32, HRCD/anxiety disorder: 1.21, HRUC/anxiety disorder: 1.28). Subgroup analyses revealed a stronger association for CD and depression (HR: 1.51) and UC and depression (HR:1.49) among male patients as well as UC and anxiety disorders (HR: 1.51) among female patients. CONCLUSION: Our data argue for a significant association between IBD and mental diseases including depression and anxiety disorders. Although further pathophysiological research is warranted, we hypothesize that specific psychological screening measures in IBD patients could improve quality of life and outcome.


Assuntos
Colite Ulcerativa , Doença de Crohn , Doenças Inflamatórias Intestinais , Humanos , Masculino , Feminino , Depressão/epidemiologia , Depressão/etiologia , Estudos Retrospectivos , Pacientes Ambulatoriais , Qualidade de Vida , Doenças Inflamatórias Intestinais/complicações , Doenças Inflamatórias Intestinais/epidemiologia , Colite Ulcerativa/complicações , Colite Ulcerativa/epidemiologia , Colite Ulcerativa/psicologia , Doença de Crohn/epidemiologia , Doença de Crohn/complicações , Doença de Crohn/psicologia , Transtornos de Ansiedade/complicações
13.
Dig Dis Sci ; 68(12): 4368-4380, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37897556

RESUMO

BACKGROUND: Crohn's Colitis Care is an adult inflammatory bowel disease eHealth system. Crohn's Colitis Care required additional pediatric functionality to enable life-long records and mitigate transition inadequacies. AIM: This study describes and evaluates a consensus method developed to ensure consumer needs were met. METHODS: Pediatric-specific functionality and associated resources considered important for inclusion were developed by a clinician consensus group. This group was divided into thematic subgroups and underwent two voting rounds. The content validity index was used to determine items reaching consensus. Children with inflammatory bowel disease and their parents were later shown a descriptive list of non-clinical inclusion topics proposed by the consensus group, and asked to vote on whether topic-related functionality and resources should be included. RESULTS: The consensus process consulted 189 people in total (38 clinicians, 32 children with inflammatory bowel disease and 119 parents). There was agreement across all groups to incorporate functionality and resources pertaining to quality of life, mental health, self-management, and transition readiness; however, divergence was seen for general inflammatory bowel disease facts, your inflammatory bowel disease history, and satisfaction. Cost saw the greatest disparity, being less supported by consumers compared to clinicians. Over 75% of consumers agreed it would be okay for appointments to take longer for survey completion, and > 90% thought Crohn's Colitis Care should allow consumers to ask their treating team questions. CONCLUSIONS: Widespread consumer co-design and consultation were important in unveiling differing perspectives to ensure Crohn's Colitis Care was built to support both consumer and clinician perspectives. Consumers collaborate to create a list of functionality and resources to be included in software (left), influencing the final product build (right).


Assuntos
Colite Ulcerativa , Colite , Doença de Crohn , Doenças Inflamatórias Intestinais , Adulto , Criança , Humanos , Qualidade de Vida , Doenças Inflamatórias Intestinais/terapia , Doença de Crohn/terapia , Doença de Crohn/psicologia , Encaminhamento e Consulta , Colite Ulcerativa/psicologia
14.
Inflamm Bowel Dis ; 29(11): 1681-1692, 2023 11 02.
Artigo em Inglês | MEDLINE | ID: mdl-37300505

RESUMO

BACKGROUND: The Ulcerative Colitis (UC) Narrative global survey assessed aspects of living with UC. This analysis aimed to identify health care disparities, social determinants of health, and emotional impacts related to UC disease management, patient experience, and quality of life. METHODS: The survey was conducted by The Harris Poll from August 2017 to February 2018 among adults with UC. Responses from 1000 patients in the United States, Canada, Japan, France, and Finland were analyzed based on patient income, employment status, educational level, age, sex, and psychological comorbidities. Odds ratios (ORs) with significant P values (P < .05) from multivariate logistic regression models are reported. RESULTS: Low-income vs high-income patients were less likely to have participated in a peer mentoring (OR, 0.30) or UC education program (OR, 0.51). Patients not employed were less likely to report being in "good/excellent" health (OR, 0.58) than patients employed full time. Patients with low vs high educational levels were less likely to have reached out to patient associations/organizations (OR, 0.59). Patients aged younger than 50 years vs those aged 50 years and older were less likely to have visited an office within an inflammatory bowel disease center/clinic in the past 12 months (OR, 0.53). Males were less likely to be currently seeing their gastroenterologist than females (OR, 0.66). Patients with vs without depression were less likely to agree that UC had made them more resilient (OR, 0.51). CONCLUSIONS: Substantial differences in disease management and health care experience were identified, based on categories pertaining to patient demographics and psychological comorbidities, which may help health care providers better understand and advance health equity to improve patient care.


Patient-reported survey results revealed substantial differences in disease management and health care experience in patients with ulcerative colitis, based on categories pertaining to patient demographics and diagnosed psychological comorbidities, including income level, employment status, educational level, age, sex, depression, and anxiety.


Assuntos
Colite Ulcerativa , Adulto , Masculino , Feminino , Humanos , Estados Unidos , Pessoa de Meia-Idade , Idoso , Colite Ulcerativa/psicologia , Qualidade de Vida/psicologia , Disparidades em Assistência à Saúde , Determinantes Sociais da Saúde , Emoções
15.
J Gastroenterol ; 58(8): 751-765, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37351647

RESUMO

BACKGROUND: The YOu and Ulcerative colitis: Registry and Social network (YOURS) is a large-scale, multicenter, patient-focused registry investigating the effects of lifestyle, psychological factors, and clinical practice patterns on patient-reported outcomes in patients with ulcerative colitis in Japan. In this initial cross-sectional baseline analysis, we comprehensively explored impacts of symptom severity or proctocolectomy on nine patient-reported outcomes. METHODS: Patients receiving tertiary care at medical institutions were consecutively enrolled in the YOURS registry. The patients completed validated questionnaires on lifestyle, psychosocial factors, and disease-related symptoms. Severity of symptoms was classified with self-graded stool frequency and rectal bleeding scores (categories: remission, active disease [mild, moderate, severe]). The effects of symptom severity or proctocolectomy on nine scales for quality of life, fatigue, anxiety/depression, work productivity, and sleep were assessed by comparing standardized mean differences of the patient-reported outcome scores. RESULTS: Of the 1971 survey responses analyzed, 1346 (68.3%) patients were in remission, 583 (29.6%) had active disease, and 42 (2.1%) had undergone proctocolectomy. A linear relationship between increasing symptom severity and worsening quality of life, fatigue, anxiety, depression, and work productivity was observed. Patients with even mild symptoms had worse scores than patients in remission. Patients who had undergone proctocolectomy also had worse scores than patients in remission. CONCLUSIONS: Ulcerative colitis was associated with reduced mood, quality of life, fatigue, and work productivity even in patients with mild symptoms, suggesting that management of active ulcerative colitis may improve patient-reported outcomes irrespective of disease severity. (UMIN Clinical Trials Registry: UMIN000031995, https://www.umin.ac.jp/ctr/index-j.htm ).


Assuntos
Colite Ulcerativa , Proctocolectomia Restauradora , Humanos , Colite Ulcerativa/cirurgia , Colite Ulcerativa/psicologia , Qualidade de Vida , Proctocolectomia Restauradora/efeitos adversos , Estudos Transversais , Medidas de Resultados Relatados pelo Paciente
16.
Clin Gastroenterol Hepatol ; 21(3): 741-749.e3, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35952942

RESUMO

BACKGROUND & AIMS: Although perceived stress (PS) has been associated with symptomatic flares in inflammatory bowel disease, clinical and physiological measures associated with perceived stress and flare are not known. The aim of this study was to identify physiological factors associated with perceived stress in ulcerative colitis (UC) subjects, and their relationship with flare. METHODS: Patients with UC in clinical remission (Simple Colitis Clinical Activity Index [SCCAI] score <5) underwent clinical and behavioral assessments, morning salivary cortisol measurements, autonomic nervous system activity testing (heart rate variability, electrodermal activity) at baseline with patient-reported SCCAI every 2 weeks over 1 to 2 years and fecal calprotectin at time of flare. Clinical flares (SCCAI ≥5) and biochemical flares (SCCAI ≥5 with fecal calprotectin ≥250 µg/g) were evaluated. RESULTS: One hundred ten patients with UC were enrolled, with mean follow-up of 65.6 weeks. Patients with UC with higher and lower PS were determined. Although the high PS group had 3.6 times higher odds of a clinical flare than the low PS group, no significant differences in biochemical flares were observed between the low and high PS groups. The high vs low PS group differed in tonic sympathetic arousal as indexed by significantly greater baseline electrodermal activity (4.3 vs 3.4 microsiemens; P = .026) in the high PS group, but not in terms of heart rate variability and morning cortisol levels. Increased fecal calprotectin was associated with cardioautonomic measures, suggesting lower parasympathetic activity. CONCLUSIONS: Increased PS assessed at baseline is associated with tonic sympathetic arousal and greater odds of clinical flares in patients with UC.


Assuntos
Colite Ulcerativa , Estresse Psicológico , Exacerbação dos Sintomas , Humanos , Colite Ulcerativa/fisiopatologia , Colite Ulcerativa/psicologia , Fezes/química , Hidrocortisona , Doenças Inflamatórias Intestinais/fisiopatologia , Doenças Inflamatórias Intestinais/psicologia , Complexo Antígeno L1 Leucocitário , Estresse Psicológico/fisiopatologia
17.
Nutrients ; 14(20)2022 Oct 14.
Artigo em Inglês | MEDLINE | ID: mdl-36296976

RESUMO

Food-related quality of life (FR-QoL) is impaired in inflammatory bowel disease (IBD) and education and support on food-related issues in IBD is needed. This feasibility trial aimed to investigate the effectiveness and acceptability of a web resource in enhancing FR-QoL in newly diagnosed IBD. Patients diagnosed with Crohn's disease or ulcerative colitis in the preceding 12 months, with an impaired FR-QoL, were recruited and randomised to either receive access to the web resource (covering IBD-specific diet concerns) or no access (control group) for 12 weeks, while receiving usual clinical care. FR-QoL, health-related quality of life, psychological outcomes, and clinical disease activity were assessed. Web resource usage was assessed, and patients' experiences of the web resource were investigated in semi-structured interviews. Of 81 patients screened, 50 participants were randomised, 30 to the web resource and 20 to control. FR-QoL increased more in the web resource (+11.7 SD 18.2) than control group (+1.4 SD 20.4) (p = 0.067), while IBD distress reduced in the web resource (-6.8 SD 26.6) and increased in the control group (+8.3 SD 25.5) (p = 0.052), albeit not statistically significantly. End of trial Crohn's disease clinical activity (PRO-2) was significantly lower in the web resource than control group (p = 0.046). Participants most frequently accessed web resource content discussing dietary management of gut symptoms and in semi-structured interviews, reported the website to contain relevant information. This feasibility study demonstrates potential effectiveness of the web resource on improving FR-QoL and psychological outcomes in IBD. An adequately powered effectiveness RCT is feasible to conduct and is now warranted. NCT03884686.


Assuntos
Colite Ulcerativa , Doença de Crohn , Doenças Inflamatórias Intestinais , Humanos , Qualidade de Vida , Estudos de Viabilidade , Doenças Inflamatórias Intestinais/psicologia , Colite Ulcerativa/psicologia , Doença Crônica
18.
Turk J Gastroenterol ; 33(5): 387-396, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35678796

RESUMO

BACKGROUND: Coronavirus disease 2019 pandemic was expected to have traumatic effects and increase the anxiety levels of inflamma- tory bowel disease patients. METHODS: We aimed to investigate the psychosocial effects of the coronavirus disease 2019 pandemic on patients with inflammatory bowel disease by revealing the risk perception for present disease, coping strategies, follow-up characteristics, and treatment adher- ence. This is a cross-sectional, web-based survey study including 798 inflammatory bowel disease patients who were followed at our outpatient clinic and 303 volunteer who did not have any known chronic diseases and were not health professionals were included as the control group. RESULTS: In this study, 281 of the patients were diagnosed with Crohn's disease and 215 with ulcerative colitis. The mean age of patients with Crohn's disease, ulcerative colitis, and the control group were 40.9 ± 13.1, 42.3 ± 12.7, and 39.9 ± 11.6, respectively. Here, 119 (42%) of the Crohn's disease cases, 116 (54%) of the ulcerative colitis cases, and 170 (56%) of the control group were male. Among the 3 groups, coronavirus disease 2019-related post-traumatic stress disorder rates (Impact of Event Scale-Revised > 33) and State-Trait Anxiety Inventory of current status of anxiety-related anxiety rates were not statistically different while State-Trait Anxiety Inventory of anxiety tendency-related constant anxiety was higher in inflammatory bowel disease patients than the control group (P < .017). CONCLUSION: Inflammatory bowel disease patients with anxiety have a lower quality of life, and this may worsen the clinical course of the disease. Coronavirus disease 2019 is a major source of stress for such a vulnerable population. During the pandemic, psychological support and mental health awareness should be made accessible to all individuals.


Assuntos
COVID-19 , Colite Ulcerativa , Doença de Crohn , Doenças Inflamatórias Intestinais , COVID-19/epidemiologia , Doença Crônica , Colite Ulcerativa/psicologia , Doença de Crohn/complicações , Doença de Crohn/psicologia , Estudos Transversais , Feminino , Humanos , Doenças Inflamatórias Intestinais/epidemiologia , Doenças Inflamatórias Intestinais/psicologia , Masculino , Pandemias , Qualidade de Vida
19.
Inflamm Bowel Dis ; 28(12): 1872-1892, 2022 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-35661212

RESUMO

BACKGROUND: Ulcerative Colitis (UC) is a chronic, inflammatory disease, characterized by symptomatic periods (flare) interspersed with asymptomatic periods (remission). Evidence suggests that psychological stress can trigger flare. Studies have shown that mindfulness interventions (MI) reduce stress, foster more adaptive coping, and improve quality of life, but have been minimally used for UC patients. The objective of this study was to determine whether participation in an MI results in improvements in UC disease course and inflammatory cascades, mindfulness, perceived stress, and other psychological outcomes in inactive UC patients with limited or no exposure to past MI. METHODS: Participants were randomized to an 8-week MI or control group. Biological and psychological assessments were performed at baseline, post 8-week course, and at 6- and 12-months. RESULTS: Forty-three participants enrolled. The MI increased the state of mindfulness and mindfulness skills, decreased perceived stress and stress response in patients with inactive UC. The MI intervention significantly decreased the incidence of flare over 12 months (P < .05). None of the UC patients in the MI flared during 12 months, while 5 of 23 (22%) control group participants flared during the same period. CONCLUSIONS: MIs could be considered as adjuvant treatment for a subset of UC patients with high perceived stress and low state of mindfulness.The trial was registered at clinicaltrials.gov as NCT01491997.


Inactive ulcerative colitis patients were randomized to a mindfulness intervention or control group. Biological and psychological assessments were performed over 12 months. The intervention significantly decreased the incidence of flares, increased the state of mindfulness and mindfulness skills, and decreased perceived stress and the stress response.


Assuntos
Colite Ulcerativa , Atenção Plena , Humanos , Colite Ulcerativa/terapia , Colite Ulcerativa/psicologia , Qualidade de Vida , Estresse Psicológico/prevenção & controle , Estresse Psicológico/psicologia , Progressão da Doença
20.
J Healthc Eng ; 2022: 7702432, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35449854

RESUMO

To investigate the characteristics of psychological symptoms in inflammatory bowel disease (IBD), to study the relationship between psychological symptoms and quality of life, and to provide some theoretical basis for the corresponding psychological treatment of IBD patients with psychiatric abnormalities. With the development of artificial intelligence (AI) and its gradual application to the medical field, it has brought new ideas to the medical development, and its research and application in IBD, including ulcerative colitis (UC) and Crohn's disease (CD), is increasing. Machine learning is used to select reasonable models and methods to help the prediction, diagnosis, treatment, and prognosis of IBD. In this study, we improved on the classical unidirectional LSTM model by adding backward and forward LSTM layers, designed a bidirectional LSTM model to improve the shortcomings of unidirectional LSTM with insufficient dependence on the posterior, introduced the contribution rate α to adjust the weight matrix of the forward LSTM layer and the backward LSTM layer, and experimentally verified the correctness and superiority of the proposed model. A total of 159 patients with IBD and 89 healthy people were collected and psychologically assessed using the general status questionnaire, the 90-item symptom checklist (SCL-90). Patients with IBD are prone to a combination of obsessive-compulsive, interpersonal, depressive, hostile, and other abnormal psychological symptoms, and their quality of life is significantly reduced; quality of life is mainly affected by disease condition, depression, interpersonal sensitivity, and paranoia, and patients in the active stage of the disease with heavy symptoms of depression, paranoia, and interpersonal sensitivity have low quality of life.


Assuntos
Colite Ulcerativa , Doenças Inflamatórias Intestinais , Inteligência Artificial , Doença Crônica , Colite Ulcerativa/psicologia , Humanos , Doenças Inflamatórias Intestinais/diagnóstico , Doenças Inflamatórias Intestinais/psicologia , Qualidade de Vida/psicologia , Tecnologia
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