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.

Esprúe colágeno: ¿entidad secundaria o independiente de la enfermedad celíaca? / Collagenous sprue: secondary or independent from celiac disease?

El esprúe colágeno es una entidad poco prevalente que cursa con diarrea persistente con pérdida de peso y malabsorción por afectación del intestino delgado, principalmente duodeno y yeyuno proximal, necesitando para el diagnóstico la presencia de una clínica y una histología compatible con atrofia y depósito subepitelial de colágeno. Su etiología no es totalmente conocida, aunque su origen más propuesto es el autoinmune, ya que está ampliamente relacionada con la enfermedad celíaca e incluso se ha propuesto que se trate de una evolución de celiaquía refractaria a dieta sin gluten. En relación a esta incertidumbre presentamos el caso de una paciente con diarrea malabsortiva e importante repercusión clínica por esprúe colágeno, la cual tuvo una buena respuesta a corticoides orales (prednisona), pero hubo que añadir azatioprina. Además mejoró inicialmente con nutrición parenteral central domiciliaria...

Collagenous sprue is a rare disease that goes with persistent diarrhea, weight loss and bad absortion, because it affects the small intestine, mainly duodenum and proximal jejunum. Diagnosis is made by having clinical signs and histological proof of atrophy and subepitelial deposit of collagenous material. Its etiology is not known completely, it is proposed that the origin is autoimmune because its relationship with celiac disease. Also there is a proposal that is a celiac evolution to gluten free diet. Is because this is not clear that we present a case of a patient with bad absorptive diarrhea and a clinical expression of collagenous sprue, that had a great clinical response to corticosteroids (prednisone) but we had to add azatioprine. Also, initially improved with home parenteral nutrition center...

[Collagenous sprue: secondary or independent from celiac disease?]. / Esprúe colágeno: ¿entidad secundaria o independiente de la enfermedad celíaca?

Collagenous sprue is a rare disease that goes with persistent diarrhea, weight loss and bad absortion, because it affects the small intestine, mainly duodenum and proximal jejunum. Diagnosis is made by having clinical signs and histological proof of atrophy and subepitelial deposit of collagenous material. Its etiology is not known completely, it is proposed that the origin is autoimmune because its relationship with celiac disease. Also there is a proposal that is a celiac evolution to gluten free diet. Is because this is not clear that we present a case of a patient with bad absorptive diarrhea and a clinical expression of collagenous sprue, that had a great clinical response to corticosteroids with home parenteral nutrition center.

[Effectiveness of maintenance azathioprine therapy without oral cyclosporine after severe attacks of ulcerative colitis refractory to endovenous steroids]. / Eficacia del mantenimiento con azatioprina sin ciclosporina oral tras un brote grave de colitis ulcerosa refractario a esteroides intravenosos.

INTRODUCTION: Intravenous (i.v.) cyclosporine (CsA) has proved effective in controlling acute attacks of ulcerative colitis unresponsive to IV steroids. After the initial response to i.v. CsA, two alternatives for maintaining remission have been proposed: either double or triple association with immunosuppressors. The aim of this study was to evaluate the effectiveness of i.v. CsA, its adverse effects, and the subsequent long-term effectiveness of azathioprine/6-mercaptopurine without oral CsA. MATERIAL AND METHODS: Intravenous CsA was administered for 10 days, at a dose of 4 mg/kg per day, to 20 patients diagnosed with a severe attack of ulcerative colitis who did not respond to IV steroid treatment. Patients who responded to CsA and could be discharged were administered azathioprine or 6-mercaptopurine associated with a decreasing dose of oral steroids, without oral CsA. RESULTS: Sixty per cent (12/20) of the patients showed clinical-biological improvement after CsA administration, thus avoiding colectomy, and were discharged from hospital. Nine of the 12 responders (three withdrew from the study) were followed-up long term. Of these nine patients, four (44.4%) underwent colectomy, all before the sixth month of discharge. All adverse effects were mild, except for one death. CONCLUSIONS: Intravenous CsA is effective in inducing remission of ulcerative colitis in severe attacks resistant to i.v. steroids. When treatment with azathioprine is administered without oral CsA, patients requiring colectomy need this procedure within the first 6 months of discharge.