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

Perioperative management and early complications after intestinal resection with ileocolonic anastomosis in Crohn’s disease: analysis from the PRACTICROHN study

This study is aimed at describing the prevalence of and risk factors associated with early post-operative complications after Crohn’s disease-related intestinal resection. Methods: This was a retrospective analysis of data from the PRACTICROHN cohort. Adult Crohn’s disease patients who underwent ileocolonic resection with ileocolonic anastomosis between January 2007 and December 2010 were included. The complications evaluated included death, ileus, anastomotic leak, abscess, wound infection, catheter-related infection, digestive bleeding and other extra-abdominal infections that occurred in the 30 days after surgery.Results: A total of 364 patients (median age at surgery 38 years and 50% men) were included. Indication for surgery was: stricturing disease (46.4%), penetrating disease (31.3%), penetrating and stricturing disease (14.0%) or resistance to medical treatment (5.8%). Early complications were recorded in 100 (27.5%) patients, with wound infection, intra-abdominal abscess and anastomotic leakage being the most frequent complications. Median hospitalization duration was 16 days for patients with complications vs. 9 days without complications (P<0.001). Complications were more common among patients with penetrating disease (36/114, 31.6%) and those refractory to treatment (9/21, 42.9%) compared with stricturing disease (45/169, 26.6%) or stricturingþpenetrating disease (6/51, 11.8%) (P¼0.040). The rate of complications was higher among patients with diagnosis made at the time of surgery (15/31, 48.4%) compared with the rest (85/331, 25.7%) (P¼0.013). Medication received at the time of surgery did not affect the rate of complications. Conclusions: Almost a quarter of patients developed early complications after intestinal resection. Penetrating disease and urgent surgery were associated with an increased risk of complicationsThis study was supported by Merck Sharp and Dohme, Spai

The experience of inflammatory bowel disease patients with healthcare: A survey with the IEXPAC instrument

Inflammatory bowel disease; Patients experience; Chronic diseaseMalaltia intestinal inflamatòria; Experiència dels pacients; Malalties cròniquesEnfermedad intestinal inflamatoria; Experiencia de los pacientes; Enfermedades crónicasTo assess inflammatory bowel disease (IBD) patients' experience of chronic illness care and the relationship with demographic and healthcare-related characteristics.This cross-sectional survey used the Instrument to Evaluate the EXperience of PAtients with Chronic diseases (IEXPAC) questionnaire to identify parameters associated with a better healthcare experience for IBD patients. IEXPAC questionnaire responses are grouped into 3 factors - productive interactions, new relational model, and patient self-management, scoring from 0 (worst) to 10 (best experience). Scores were analyzed by bivariate comparisons and multiple linear regression models.Surveys were returned by 341 of 575 patients (59.3%, mean age 46.8 (12.9) years, 48.2% women). Mean (SD) IEXPAC score was 5.9 (2.0); scores were higher for the productive interactions (7.7) and patient self-management factors (6.7) and much lower for the new relational model factor (2.2). Follow-up by a nurse, being seen by the same physician, and being treated with a lower number of medicines were associated with higher (better) overall patient experience score, and higher productive interactions and self-management factor scores. A higher productive interactions score was also associated with patients receiving medication subcutaneously or intravenously. Higher new relational model scores were associated with follow-up by a nurse, affiliation to a patients' association, receiving help from others for healthcare, a lower number of medicines and a higher educational level.In patients with IBD, a better overall patient experience was associated with follow-up by a nurse, being seen by the same physician, and being treated with a lower number of medicines

Management and outcomes of patients with Crohn’s disease with first vs multiple surgeries: results from the PRACTICROHN study

Background: Surgery in Crohn’s disease (CD) may be associated with poor prognosis and clinical and surgical recurrence. The aim of this study was to describe and compare the post-operative management and outcomes of patients with CD who underwent first vs recurrent surgeries. Methods: Observational study that included adult CD patients from 26 Spanish hospitals who underwent ileocolonic resection with ileocolonic anastomosis between January 2007 and December 2010. Data were retrospectively collected from the medical records. Results: Data from 314 patients were analysed, of whom 262 (83%) underwent first surgery and 52 (17%) referred to previous CD surgeries. Baseline characteristics were similar between the two groups except for a higher rate of stricturing behavior at diagnosis among re-operated patients (P¼0.03). After surgery, a higher proportion of re-operated patients received prophylactic treatment with immunomodulators compared with patients with first surgery (P¼0.04). In re-operated patients, time to clinical recurrence was not associated with the fact of receiving or not prophylaxis, whereas, in patients with first surgery, recurrence-free survival was greater when prophylaxis was received (P¼0.03). Conclusions: After surgery, a higher proportion of patients with previous surgeries received prophylactic treatment with immunomodulators compared with patients with first surgery. Although prophylactic treatment was beneficial for preventing clinical recurrence in patients operated on for the first time, it did not significantly reduce the risk of further recurrence in patients with previous surgeries. This suggests that effective prophylactic therapies are still needed in this subset of patientsThis study was funded by Merck Sharp & Dohme of Spain, a subsidiary of Merck & Co., Inc., Kenilworth, New Jersey, US

The experience of inflammatory bowel disease patients with healthcare: a survey with the IEXPAC instrument

[Abstract] To assess inflammatory bowel disease (IBD) patients' experience of chronic illness care and the relationship with demographic and healthcare-related characteristics.This cross-sectional survey used the Instrument to Evaluate the EXperience of PAtients with Chronic diseases (IEXPAC) questionnaire to identify parameters associated with a better healthcare experience for IBD patients. IEXPAC questionnaire responses are grouped into 3 factors - productive interactions, new relational model, and patient self-management, scoring from 0 (worst) to 10 (best experience). Scores were analyzed by bivariate comparisons and multiple linear regression models.Surveys were returned by 341 of 575 patients (59.3%, mean age 46.8 (12.9) years, 48.2% women). Mean (SD) IEXPAC score was 5.9 (2.0); scores were higher for the productive interactions (7.7) and patient self-management factors (6.7) and much lower for the new relational model factor (2.2). Follow-up by a nurse, being seen by the same physician, and being treated with a lower number of medicines were associated with higher (better) overall patient experience score, and higher productive interactions and self-management factor scores. A higher productive interactions score was also associated with patients receiving medication subcutaneously or intravenously. Higher new relational model scores were associated with follow-up by a nurse, affiliation to a patients' association, receiving help from others for healthcare, a lower number of medicines and a higher educational level.In patients with IBD, a better overall patient experience was associated with follow-up by a nurse, being seen by the same physician, and being treated with a lower number of medicines

Spatiotemporal Characteristics of the Largest HIV-1 CRF02_AG Outbreak in Spain: Evidence for Onward Transmissions

Background and Aim: The circulating recombinant form 02_AG (CRF02_AG) is the predominant clade among the human immunodeficiency virus type-1 (HIV-1) non-Bs with a prevalence of 5.97% (95% Confidence Interval-CI: 5.41–6.57%) across Spain. Our aim was to estimate the levels of regional clustering for CRF02_AG and the spatiotemporal characteristics of the largest CRF02_AG subepidemic in Spain.Methods: We studied 396 CRF02_AG sequences obtained from HIV-1 diagnosed patients during 2000–2014 from 10 autonomous communities of Spain. Phylogenetic analysis was performed on the 391 CRF02_AG sequences along with all globally sampled CRF02_AG sequences (N = 3,302) as references. Phylodynamic and phylogeographic analysis was performed to the largest CRF02_AG monophyletic cluster by a Bayesian method in BEAST v1.8.0 and by reconstructing ancestral states using the criterion of parsimony in Mesquite v3.4, respectively.Results: The HIV-1 CRF02_AG prevalence differed across Spanish autonomous communities we sampled from (p &lt; 0.001). Phylogenetic analysis revealed that 52.7% of the CRF02_AG sequences formed 56 monophyletic clusters, with a range of 2–79 sequences. The CRF02_AG regional dispersal differed across Spain (p = 0.003), as suggested by monophyletic clustering. For the largest monophyletic cluster (subepidemic) (N = 79), 49.4% of the clustered sequences originated from Madrid, while most sequences (51.9%) had been obtained from men having sex with men (MSM). Molecular clock analysis suggested that the origin (tMRCA) of the CRF02_AG subepidemic was in 2002 (median estimate; 95% Highest Posterior Density-HPD interval: 1999–2004). Additionally, we found significant clustering within the CRF02_AG subepidemic according to the ethnic origin.Conclusion: CRF02_AG has been introduced as a result of multiple introductions in Spain, following regional dispersal in several cases. We showed that CRF02_AG transmissions were mostly due to regional dispersal in Spain. The hot-spot for the largest CRF02_AG regional subepidemic in Spain was in Madrid associated with MSM transmission risk group. The existence of subepidemics suggest that several spillovers occurred from Madrid to other areas. CRF02_AG sequences from Hispanics were clustered in a separate subclade suggesting no linkage between the local and Hispanic subepidemics

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