Knowledge of disease and access to a specialist reported by Spanish patients with ulcerative colitis. UC-LIFE survey

Education of patients with ulcerative colitis (UC) about their disease and access to a specialist are important to improve health outcomes. Our objective was to determine, by collecting information directly from the patients, their information sources and knowledge of the disease, and the options for access to the gastroenterologist. The information was collected using a printed survey handed out by 39 gastroenterologists to 15 consecutive adult patients with UC. Patients answered anonymously from their home. The responses were stratified by hospital size (> 900; 500-900; < 500 beds). A total of 585 patients received the survey and 436 responded (74.5%; mean age of 46 years [13.5], 53% men). The main information source was the specialist physician (89.2%). Between 32% and 80% of patients had areas of improvement regarding knowledge of their disease. Knowledge of the disease was better in patients from small hospitals (< 500 beds). The frequency of routine visits was also higher in small hospitals. In case of a flare-up, 60% stated they were able to contact their doctor by phone and 37%, that they could get an appointment on the same day. The percentage stating that they had to ask for an appointment and wait until their physician was available was lower in small hospitals. There are areas of improvement with regard to knowledge of their disease in patients with UC followed in hospital clinics. Patients followed in small hospitals seem to know their disease better, are followed more frequently in the clinic, and have better access in case of a flare-up.Antecedentes y propósito: la educación de los pacientes con colitis ulcerosa (CU) sobre su enfermedad y el acceso al especialista es importante para mejorar los resultados en salud. Nuestro objetivo fue conocer, recogiendo información directamente de los pacientes, sus fuentes de información y su conocimiento de la enfermedad, y las posibilidades de acceso al especialista en gastroenterología. Métodos: la información fue recogida mediante encuesta impresa, entregada por 39 gastroenterólogos a 15 pacientes adultos consecutivos con CU. Los pacientes contestaron de forma anónima desde su domicilio. Las respuestas se estratificaron según el tamaño del hospital (> 900; 500-900; < 500 camas). Resultados: quinientos ochenta y cinco pacientes recibieron la encuesta y 436 contestaron (74,5%; edad media 46 años (13,5), 53% hombres). La principal fuente de información fue su médico especialista (89,2%). Entre un 32% y un 80% presentaron áreas de mejora en el conocimiento de su enfermedad. El conocimiento de la enfermedad fue mejor en pacientes de hospitales pequeños (< 500 camas). La frecuencia de revisiones rutinarias fue mayor también en hospitales pequeños. Ante empeoramiento, el 60% declaró poder contactar por teléfono con su médico y el 37%, conseguir cita el mismo día. El porcentaje que declaró tener que pedir cita y esperar disponibilidad fue menor en hospitales pequeños. Conclusiones: en pacientes con CU seguidos en consultas hospitalarias, existen áreas de mejora en el conocimiento de su enfermedad. Los pacientes seguidos en hospitales pequeños parecen conocer mejor su enfermedad, son seguidos con más frecuencia en la consulta y tienen mejor acceso en caso de empeoramiento.Merck Sharp & Dohme de Españ

Changes in the requirement for early surgery in inflammatory bowel disease in the era of biological agents

This is the peer reviewed version of the following article: Changes in the requirement for early surgery in inflammatory bowel disease in the era of biological agents. Journal of Gastroenterology and Hepatology (2020): 29 April, which has been published in final form at https://doi.org/10.1111/jgh.15084. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived VersionsBiological therapies may be changing the natural history of inflammatory bowel diseases, reducing the need for surgical intervention. We aimed to assess whether the availability of anti‐TNF agents impacts the need for early surgery in Crohn's disease (CD) and ulcerative colitis (UC). Methods Retrospective, cohort study of patients diagnosed within a 6‐year period before and after the licensing of anti‐TNFs (1990‐1995 and 2007‐2012 for CD; 1995‐2000 and 2007‐2012 for UC) were identified in the ENEIDA Registry. Surgery‐free survival curves were compared between cohorts. Results A total of 7,370 CD patients (2,022 in Cohort 1 and 5,348 in Cohort 2) and 8,069 UC patients (2,938 in Cohort 1 and 5,131 in Cohort 2) were included. Immunosuppressants were used significantly earlier and more frequently in both CD and UC post‐biological cohorts. The cumulative probability of surgery was lower in CD following anti‐TNF approval (16% and 11%, 22% and 16%, and 29% and 19%, at 1, 3 and 5 years, respectively p<0.0001), though not in UC (3% and 2%, 4% and 4%, and 6% and 5% at 1, 3 and 5 years, respectively; p=0.2). Ileal involvement, older age at diagnosis and active smoking in CD, and extensive disease in UC, were independent risk factors for surgery, whereas high‐volume IBD centres (in both CD and UC) and immunosuppressant use (in CD) were protective factors. Conclusions Anti‐TNF availability was associated with a reduction in early surgery for CD (driven mainly by earlier and more widespread immunosuppressant use) but not in U

Patients' perceptions of the impact of ulcerative colitis on social and professional life : results from the UC-LIFE survey of outpatient clinics in Spain

Altres ajuts: X Calvet has served as speaker, consultant and advisor, or has received funding for research, from Merck Sharp & Dohme, AbbVie, Hospira, Pfizer, Faes Farma, Shire Pharmaceuticals, Gebro Pharma, Otsuka Pharmaceutical, and Vifor Pharma. F Argüelles-Arias has served as speaker, consultant and advisor, or has received funding for research, from Merck Sharp & Dohme, AbbVie, Takeda, Tillotts, Kern-Pharma, Faes Farma, Shire Pharmaceuticals, Gebro Pharma, and Vifor Pharma. A López-Sanromán has served as speaker, consultant or advisor for Merck Sharp & Dohme, AbbVie, Hospira, Gebro Pharma, Faes Farma, Shire Pharmaceuticals, Takeda, and Tillotts. L Cea-Calvo, B Juliá, and C Romero de Santos are full-time employees in the Medical Affairs Department, Merck Sharp & Dohme Spain. D Carpio has served as consultant to Merck Sharp & Dohme, AbbVie, Pfizer, and UCB Pharma, has received payment as speaker from Merck Sharp & Dohme, AbbVie, Pfizer, Takeda, Shire, Gebro Pharma, Tillotts, Dr Falk Pharma, and Almirall, and has been involved in clinical research with Merck Sharp & Dohme, AbbVie, and Tygenix. The authors report no other conflicts of interest in this work.Ulcerative colitis (UC) may cause many patients to miss out on important personal and professional opportunities. We therefore conducted a survey (UC-LIFE) to assess patients' perceptions of the impact of UC on social and professional lives. Consecutive unselected UC patients aged ≥18 years were recruited from 38 outpatient clinics in Spain. Patients completed the survey at home, returning it by post. The survey comprised 44 multiple-choice questions, including questions about the impact of UC on social, personal, professional, and academic activities. Of 585 patients invited, 436 (75%) returned the survey (mean age 46 years; 47% women). High proportions of patients considered their disease "sometimes", "frequently" or "mostly/always" influenced leisure activities (65.1%), recreational or professional activities (57.6%), or relationships with relatives or friends (9.9%). Patients also reported that UC influenced their decision to have children (17.2%), or their ability to take care of children (40.7%); these percentages were higher in women and in younger patients. Overall, 47.0% of patients declared that UC influenced the kind of job they performed, 20.3% had rejected a job due to UC, 14.7% had lost a job due to UC, and 19.4% had had academic problems due to UC. Beyond symptoms alone, UC imposes an enormous additional burden on patients' social, professional, and family lives. This extra burden clearly needs to be addressed so that the ultimate goal of IBD treatment - normalization of patient quality of life - can be attained by as many patients as possible

Knowledge of disease and access to a specialist reported by Spanish patients with ulcerative colitis: UC-LIFE survey

Background and aim: Education of patients with ulcerative colitis (UC) about their disease and access to a specialist are important to improve health outcomes. Our objective was to determine, by collecting information directly from the patients, their information sources and knowledge of the disease, and the options for access to the gastroenterologist. Methods: The information was collected using a printed survey handed out by 39 gastroenterologists to 15 consecutive adult patients with UC. Patients answered anonymously from their home. The responses were stratified by hospital size (> 900; 500-900; < 500 beds). Results: A total of 585 patients received the survey and 436 responded (74.5%; mean age of 46 years [13.5], 53% men). The main information source was the specialist physician (89.2%). Between 32% and 80% of patients had areas of improvement regarding knowledge of their disease. Knowledge of the disease was better in patients from small hospitals (< 500 beds). The frequency of routine visits was also higher in small hospitals. In case of a flare-up, 60% stated they were able to contact their doctor by phone and 37%, that they could get an appointment on the same day. The percentage stating that they had to ask for an appointment and wait until their physician was available was lower in small hospitals. Conclusions: There are areas of improvement with regard to knowledge of their disease in patients with UC followed in hospital clinics. Patients followed in small hospitals seem to know their disease better, are followed more frequently in the clinic, and have better access in case of a flare-up

Patients' perceptions of the impact of ulcerative colitis on social and professional life : results from the UC-LIFE survey of outpatient clinics in Spain

Altres ajuts: X Calvet has served as speaker, consultant and advisor, or has received funding for research, from Merck Sharp & Dohme, AbbVie, Hospira, Pfizer, Faes Farma, Shire Pharmaceuticals, Gebro Pharma, Otsuka Pharmaceutical, and Vifor Pharma. F Argüelles-Arias has served as speaker, consultant and advisor, or has received funding for research, from Merck Sharp & Dohme, AbbVie, Takeda, Tillotts, Kern-Pharma, Faes Farma, Shire Pharmaceuticals, Gebro Pharma, and Vifor Pharma. A López-Sanromán has served as speaker, consultant or advisor for Merck Sharp & Dohme, AbbVie, Hospira, Gebro Pharma, Faes Farma, Shire Pharmaceuticals, Takeda, and Tillotts. L Cea-Calvo, B Juliá, and C Romero de Santos are full-time employees in the Medical Affairs Department, Merck Sharp & Dohme Spain. D Carpio has served as consultant to Merck Sharp & Dohme, AbbVie, Pfizer, and UCB Pharma, has received payment as speaker from Merck Sharp & Dohme, AbbVie, Pfizer, Takeda, Shire, Gebro Pharma, Tillotts, Dr Falk Pharma, and Almirall, and has been involved in clinical research with Merck Sharp & Dohme, AbbVie, and Tygenix. The authors report no other conflicts of interest in this work.Ulcerative colitis (UC) may cause many patients to miss out on important personal and professional opportunities. We therefore conducted a survey (UC-LIFE) to assess patients' perceptions of the impact of UC on social and professional lives. Consecutive unselected UC patients aged ≥18 years were recruited from 38 outpatient clinics in Spain. Patients completed the survey at home, returning it by post. The survey comprised 44 multiple-choice questions, including questions about the impact of UC on social, personal, professional, and academic activities. Of 585 patients invited, 436 (75%) returned the survey (mean age 46 years; 47% women). High proportions of patients considered their disease "sometimes", "frequently" or "mostly/always" influenced leisure activities (65.1%), recreational or professional activities (57.6%), or relationships with relatives or friends (9.9%). Patients also reported that UC influenced their decision to have children (17.2%), or their ability to take care of children (40.7%); these percentages were higher in women and in younger patients. Overall, 47.0% of patients declared that UC influenced the kind of job they performed, 20.3% had rejected a job due to UC, 14.7% had lost a job due to UC, and 19.4% had had academic problems due to UC. Beyond symptoms alone, UC imposes an enormous additional burden on patients' social, professional, and family lives. This extra burden clearly needs to be addressed so that the ultimate goal of IBD treatment - normalization of patient quality of life - can be attained by as many patients as possible

Reviewing the therapeutic role of budesonide in Crohn's disease Revisando el papel terapéutico de la budesonida en la enfermedad de Crohn

Oral budesonide is a glucocorticoid of primarily local action. In the field of digestive diseases, it is used mainly in inflammatory bowel disease, but also in other indications. This review addresses the pharmacology, pharmacodynamics and therapeutic use of budesonide. Its approved indications are reviewed, as well as other clinical scenarios in which it could play a role, in order to facilitate its use and improve the accuracy of its prescription