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

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

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

Mercaptopurine and inflammatory bowel disease: the other thiopurine

Background: Data about use and effectiveness of mercaptopurine in inflammatory bowel disease are relatively limited. Aims: To assess the possible therapeutic indications, efficacy and safety of mercaptopurine as an alternative to azathioprine in inflammatory bowel disease. Methods: Retrospective observational study in patients treated with mercaptopurine in a total cohort of 1,574 patients with inflammatory bowel disease. Results: One hundred and fifty-two patients received mercaptopurine, 15.7% of these patients as an initial thiopurine, 5.3% after azathioprine failure, and 79% after azathioprine intolerance. In 52.6% of patients (n = 80), adverse effects of mercaptopurine occurred, resulting in withdrawal in 49 of them. Mercaptopurine was effective in 39% of cases (95% CI 31-48%). In the remaining patients, failure was due mainly to withdrawal due to side effects (55.1%) and therapeutic step-up (33.7%). The average total time of mercaptopurine exposure was 36 months (IQR: 2-60). Myelotoxicity with mercaptopurine was more common in patients with intermediate TPMT activity than in those with normal activity (p = 0.046). Conclusions: In our setting, mercaptopurine is primarily used as a rescue therapy in patients with azathioprine adverse effects. This could explain its modest efficacy and the high rate of adverse effects. However, this drug is still an alternative in this group of patients, before a therapeutic step-up to biologics is considered

Risk Prediction and Comparative Efficacy of Anti-TNF vs Thiopurines, for Preventing Postoperative Recurrence in Crohn's Disease: A Pooled Analysis of 6 Trials

Background & Aims: The superiority of anti-TNF-α agents to thiopurines for the prevention of postoperative recurrence of Crohn's disease (CD) after ileocolonic resection remains controversial. In this meta-analysis of individual participant data (IPD), the effect of both strategies was compared and assessed after risk stratification. Methods: After a systematic literature search, IPD were requested from randomized controlled trials investigating thiopurines and/or anti-TNF-α agents after ileocolonic resection. Primary outcome was endoscopic recurrence (ER) (Rutgeerts score ≥i2) and secondary outcomes were clinical recurrence (Harvey-Bradshaw Index/Crohn's Disease Activity Index score) and severe ER (Rutgeerts score ≥i3). A fixed effect network meta-analysis was performed. Subgroup effects were assessed and a prediction model was established using Poisson regression models, including sex, smoking, Montreal classification, CD duration, history of prior resection and previous exposure to anti-TNF-α or thiopurines. Results: In the meta-analysis of IPD, 645 participants from 6 studies were included. In the total population, a superior effect was demonstrated for anti-TNF-α compared with thiopurine prophylaxis for ER (relative risk [RR], 0.52; 95% confidence interval [CI], 0.33–0.80), clinical recurrence (RR, 0.50; 95% CI, 0.26–0.96), and severe ER (RR, 0.41; 95% CI, 0.21–0.79). No differential subgroup effects were found for ER. In Poisson regression analysis, previous exposure to anti-TNF-α and penetrating disease behavior were associated with ER risk. The advantage of anti-TNF-α agents as compared with thiopurines was observed in low- and high-risk groups. Conclusions: Anti-TNF-α is superior to thiopurine prophylaxis for the prevention of endoscopic and clinical postoperative CD recurrence after ileocolonic resection. The advantage of anti-TNF-α agents was confirmed in subgroup analysis and after risk stratification

Anti-TNFα vs thiopurines for the prevention of postoperative recurrence in Crohn's disease: a meta-analysis of individual participant data

none11The superiority of anti-TNFα agents to thiopurines for the prevention of postoperative recurrence of Crohn's disease (CD) after ileocolonic resection remains controversial. In this meta-analysis of individual participant data (IPD-MA), the effect of both strategies was compared and assessed after risk stratification.noneBeelen, Evelien M J; Nieboer, Daan; Arkenbosch, Jeanine H C; Regueiro, Miguel D; Satsangi, Jack; Ardizzone, Sandro; López-Sanromán, Antonio; Savarino, Edoardo; Armuzzi, Alessandro; van der Woude, C Janneke; de Vries, Annemarie CBeelen, Evelien M J; Nieboer, Daan; Arkenbosch, Jeanine H C; Regueiro, Miguel D; Satsangi, Jack; Ardizzone, Sandro; López-Sanromán, Antonio; Savarino, Edoardo; Armuzzi, Alessandro; van der Woude, C Janneke; de Vries, Annemarie