EpidemIBD: rationale and design of a large-scale epidemiological study of inflammatory bowel disease in Spain.

BACKGROUND: Inflammatory bowel disease (IBD) is associated with a considerable burden to the patient and society. However, current data on IBD incidence and burden are limited because of the paucity of nationwide epidemiological studies, heterogeneous designs, and a low number of participating centers and sample size. The EpidemIBD study is a large-scale investigation to provide an accurate assessment of the incidence of IBD in Spain, as well as treatment patterns and outcomes. METHODS: This multicenter, population-based incidence cohort study included patients aged >18 years with IBD (Crohn's disease, ulcerative colitis, or unclassified IBD) diagnosed during 2017 in 108 hospitals in Spain, covering 50% of the Spanish population. Each participating patient will attend 10 clinic visits during 5 years of follow up. Demographic data, IBD characteristics and family history, complications, treatments, surgeries, and hospital admissions will be recorded. RESULTS: The EpidemIBD study is the first large-scale nationwide study to investigate the incidence of IBD in Spain. Enrollment is now completed and 3627 patients are currently being followed up. CONCLUSIONS: The study has been designed to overcome many of the limitations of previous European studies into IBD incidence by prospectively recruiting a large number of patients from all regions of Spain. In addition to epidemiological information about the burden of IBD, the 5-year follow-up period will also provide information on treatment patterns, and the natural history and financial burden of IBD.

Information resources used by patients with inflammatory bowel disease: Satisfaction, expectations and information gaps / Recursos de información utilizados por los pacientes con enfermedad inflamatoria intestinal: satisfacción, expectativas y lagunas en la información

BACKGROUND AND PURPOSE: Information received by IBD patients about their disease is of particular importance. The objective of the study was to determine the information resources these patients used, together with their perceived information gaps and expected preferences. Patients and methods: A prospective, observational, cross-sectional study conducted on IBD patients attending 13 Spanish hospitals during 2008. Patients completed a semi-structured 52-question survey. Results: Survey was adequately completed by 379 of 385 patients (98%), of whom 57% had Crohn's disease and 43% ulcerative colitis. Mean patient age was 37.9 years (range, 16–76 years). Gastroenterologists were the most commonly used resource (98%), followed by the Internet (60%), and general practitioners (50%). More than 90% reported good to excellent satisfaction with gastroenterologists, nurses, and patients’ associations. Only 56% considered their information needs to be covered. The Internet was mostly used by young patients and those with a high education level. In the future, 85% of the patients would like to receive information from the gastroenterologists, and 92% by face-to-face interviews. Patients mainly want additional information on treatment (medical and surgical), clinical manifestations, cancer, and mortality risks. They also think that they are poorly informed about their social and work rights, risks of cancer and death, and research trials. Conclusions: Patients with IBD use and prefer gastroenterologists as the main source of information, but only half of them consider their information needs to be covered

ANTECEDENTES Y OBJETIVOS: La información recibida por los pacientes con EII sobre su enfermedad es de particular importancia. El objetivo de este estudio fue determinar los recursos informativos que utilizan estos pacientes, así como las lagunas de información que perciben y sus preferencias. PACIENTES Y MÉTODOS: Estudio prospectivo, observacional y transversal realizado en pacientes con EII atendidos en 13 hospitales españoles durante el año 2008. Los pacientes cumplimentaron un cuestionario semiestructurado de 52 preguntas. RESULTADOS: El cuestionario fue cumplimentado adecuadamente por 379 de los 385 pacientes participantes (98%). De ellos, el 57% presentaban enfermedad de Crohn y el 43% colitis ulcerosa. La edad media de los pacientes fue de 37,9 años (intervalo: 16-76 años). Los gastroenterólogos fueron el recurso más utilizado (98%), seguido de Internet (60%) y de los médicos de familia (50%). Más del 90% de los pacientes señaló un grado de satisfacción con el gastroenterólogo, el servicio de enfermería y las asociaciones de pacientes de buena a excelente. Solo el 56% considera que sus necesidades informativas están cubiertas. Los pacientes jóvenes y aquellos con un nivel educativo alto son los que más utilizan Internet. Al 85% de los pacientes le gustaría recibir información de los gastroenterólogos en el futuro, y el 92% preferiría tener entrevistas presenciales. Los pacientes quieren principalmente información adicional sobre tratamientos (médicos y quirúrgicos), manifestaciones clínicas, cáncer y riesgos de mortalidad. También piensan que están mal informados acerca de sus derechos sociales y laborales, los riesgos de cáncer y la mortalidad, así como sobre los estudios de investigación. CONCLUSIONES: Los pacientes con EII utilizan y prefieren tener a los gastroenterólogos como fuente principal de información, pero solo la mitad de ellos consideran que sus necesidades informativas están cubiertas

Information resources used by patients with inflammatory bowel disease: Satisfaction, expectations and information gaps.

BACKGROUND AND PURPOSE: Information received by IBD patients about their disease is of particular importance. The objective of the study was to determine the information resources these patients used, together with their perceived information gaps and expected preferences. PATIENTS AND METHODS: A prospective, observational, cross-sectional study conducted on IBD patients attending 13 Spanish hospitals during 2008. Patients completed a semi-structured 52-question survey. RESULTS: Survey was adequately completed by 379 of 385 patients (98%), of whom 57% had Crohn's disease and 43% ulcerative colitis. Mean patient age was 37.9 years (range, 16-76 years). Gastroenterologists were the most commonly used resource (98%), followed by the Internet (60%), and general practitioners (50%). More than 90% reported good to excellent satisfaction with gastroenterologists, nurses, and patients' associations. Only 56% considered their information needs to be covered. The Internet was mostly used by young patients and those with a high education level. In the future, 85% of the patients would like to receive information from the gastroenterologists, and 92% by face-to-face interviews. Patients mainly want additional information on treatment (medical and surgical), clinical manifestations, cancer, and mortality risks. They also think that they are poorly informed about their social and work rights, risks of cancer and death, and research trials. CONCLUSIONS: Patients with IBD use and prefer gastroenterologists as the main source of information, but only half of them consider their information needs to be covered.

Utilidad del infliximab en el tratamiento de la amiloidosis secundaria en la enfermedad de Crohn / Infliximab in the treatment of amyloidosis secondary to Crohn's disease

La amiloidosis secundaria o AA es una grave complicación de la enfermedad de Crohn (EC) evolucionada para la que no se dispone de un tratamiento eficaz. Presentamos un caso excepcional de un varón de 33 años afecto de insuficiencia renal moderada y proteinuria, que fue diagnosticado simultáneamente de nefropatía amiloide AA y de EC oligosintomática. Fue tratado con infliximab, 5 mg/kg/8 semanas durante 4 años, azatioprina 1-1,5 mg/kg/día (primer año) y un bloqueante del sistema renina-angiotensina-aldosterona, sin complicaciones. El tratamiento se siguió de una reducción de la proteinuria, mejoría de la función renal y de los parámetros inflamatorios a lo largo del tiempo. A propósito de este caso revisamos la literatura médica y concluimos que infliximab puede ser de utilidad para el tratamiento precoz de la amiloidosis secundaria en la EC (AU)

Secondary amyloidosis (AA) is a severe complication of progressed Crohn's disease (CD) for which no effective treatment exists. We present the exceptional case of a 33 year-old male with moderate renal failure and proteinuria, who was simultaneously diagnosed with AA amyloid nephropathy and oligosymptomatic CD. He was treated with infliximab at 5mg/kg/8 weeks for 4 years, azathioprine at 1-1.5mg/kg/day (first year) and renin-angiotensin-aldosterone system blockers, with no complications. Treatment caused a decrease in proteinuria, improved renal function, and improved inflammatory parameters over time. Inspired by this case, we performed a review of the medical literature and found that infliximab could be a useful tool in the early treatment of amyloidosis secondary to CD (AU)

Infliximab in the treatment of amyloidosis secondary to Crohn's disease.

Secondary amyloidosis (AA) is a severe complication of progressed Crohn’s disease (CD) for which no effective treatment exists. We present the exceptional case of a 33 year-old male with moderate renal failure and proteinuria, who was simultaneously diagnosed with AA amyloid nephropathy and oligosymptomatic CD. He was treated with infliximab at 5mg/kg/8 weeks for 4 years, azathioprine at 1-1.5mg/kg/day (first year) and renin-angiotensin-aldosterone system blockers, with no complications. Treatment caused a decrease in proteinuria, improved renal function, and improved inflammatory parameters over time. Inspired by this case, we performed a review of the medical literature and found that infliximab could be a useful tool in the early treatment of amyloidosis secondary to CD.

Vía clínica del carcinoma colorrectal. Elaboración a partir del análisis del proceso / Clinical pathway for colorectal carcinoma. Design based on an analysis of the process

Objetivo: Las vías clínicas son herramientas para la gestión de la calidad que establecen protocolos para determinados procesos. El carcinoma colorrectal es el tumor digestivo más frecuentemente tratado en los servicios de cirugía de nuestro país, y en su atención hay numerosos factores que producen una gran variabilidad. El objetivo de este trabajo es exponer el proceso de elaboración de la vía clínica del tratamiento del carcinoma colorrectal en cirugía programada. Metodología: Para su elaboración se seleccionó un grupo de trabajo formado por los representantes de los profesionales implicados en su asistencia. Se analizó una serie de 60 pacientes intervenidos con el diagnóstico de carcinoma colorrectal previo a la elaboración de la vía clínica para la identificación de los puntos débiles. Resultado: Se identificaron como principales puntos débiles los siguientes: estudio incompleto de extensión preoperatorio, falta de información a los pacientes portadores de ostomías, protocolos quirúrgicos y patológicos con déficit de información relevante y ausencia de protocolo de seguimiento oncológico estandarizado. Para dar respuesta satisfactoria a los mencionados puntos débiles, se elaboraron los documentos principales de la vía clínica y unos protocolos asociados. Conclusiones: La elaboración de una vía clínica en el proceso de carcinoma colorrectal está plenamente justificada por el número de pacientes atendidos en nuestro hospital y la elevada variabilidad en su asistencia. El análisis del proceso, la revisión bibliográfica y el consenso de los participantes son las bases fundamentales en las que se ha apoyado su elaboración (AU)