BACKGROUND Inflammatory bowel diseases(IBD)is a heterogenous,lifelong disease,with an unpredictable and potentially progressive course,that may impose negative psychosocial impact on patients.While informed patients w...BACKGROUND Inflammatory bowel diseases(IBD)is a heterogenous,lifelong disease,with an unpredictable and potentially progressive course,that may impose negative psychosocial impact on patients.While informed patients with chronic illness have improved adherence and outcomes,previous research showed that the majority of IBD patients receive insufficient information regarding their disease.The large heterogeneity of IBD and the wide range of information topics makes a one-size fits all knowledge resource overwhelming and cumbersome.We hypothesized that different patient profiles may have different and specific information needs,the identification of which will allow building personalized computer-based information resources in the future.AIM To evaluate the scope of disease-related knowledge among IBD patients and determine whether different patient profiles drive unique information needs.METHODS We conducted a nationwide survey addressing hospital-based IBD clinics.A Total of 571 patients completed a 28-item questionnaire,rating the amount of information received at time of diagnosis and the importance of information,as perceived by participants,for a newly diagnosed patient,and for the participants themselves,at current time.We performed an exploratory factor analysis of the crude responses aiming to create a number of representative knowledge domains(factors),and analyzed the responses of a set of 15 real-life patient profiles generated by the study team.RESULTS Participants gave low ratings for the amount of information received at disease onset(averaging 0.9/5)and high ratings for importance,both for the newly diagnosed patients(mean 4.2/5)and for the participants themselves at current time(mean 3.5/5).Factor analysis grouped responses into six informationdomains.The responses of selected profiles,compared with the rest of the participants,yielded significant associations(defined as a difference in rating of>0.5 points with a P<0.05).Patients with active disease showed a higher interest in work-disability,stress-coping,and therapy-complications.Patients newly diagnosed at age>50,and patients with long-standing disease(>10 years)showed less interest in work-disability.Patients in remission with mesalamine or no therapy showed less interest in all domains except for nutrition and long-term complications.CONCLUSION We demonstrate unmet patient information needs.Analysis of various patient profiles revealed associations with specific information topics,paving the way for building patient-tailored information resources.展开更多
AIM To characterize radiological and clinical factors associated with subsequent surgical intervention in Crohn's disease(CD) patients with intra-abdominal fistulae.METHODS From a cohort of 1244 CD patients seen o...AIM To characterize radiological and clinical factors associated with subsequent surgical intervention in Crohn's disease(CD) patients with intra-abdominal fistulae.METHODS From a cohort of 1244 CD patients seen over an eight year period(2006 to 2014), 126 patients were identified as having intra-abdominal fistulae, and included in the study. Baseline patient information was collected from the medical records. Imaging studies were assessed for: anatomic type and number of fistulae; diameter of the inflammatory conglomerate; length of diseased bowel; presence of a stricture with pre-stenotic dilatation; presence of an abscess; lymphadenopathy; and the degree of bowel enhancement. Multivariate analysis for the prediction of abdominal surgery was calculated via Generalized Linear Models.RESULTS In total, there were 193 fistulae in 132 patients, the majority(52%) being entero-enteric. Fifty-nine(47%) patients underwent surgery within one year of the imaging study, of which 36(29%) underwent surgery within one month. Radiologic features that were associated with subsequent surgery included: multiple fistulae(P = 0.009), presence of stricture(P = 0.02), and an entero-vesical fistula(P = 0.01). Evidence of an abscess, lymphadenopathy, or intense bowel enhancement as well as C-reactive protein levels was not associated with an increased rate of surgery. Patients who were treated after the imaging study with combination immunomodulatory and anti-TNF therapy had significantly lower rates of surgery(P = 0.01). In the multivariate analysis, presence of a stricture [RR 4.5(1.23-16.3), P = 0.02] was the only factor that increased surgery rate.CONCLUSION A bowel stricture is the only factor predicting an increased rate of surgery. Radiological parameters may guide in selecting treatment options in patients with fistulizing CD.展开更多
基金The study was reviewed and approved by the local ethical committee at Hadassah Medical center number 0327-14-HMO.
文摘BACKGROUND Inflammatory bowel diseases(IBD)is a heterogenous,lifelong disease,with an unpredictable and potentially progressive course,that may impose negative psychosocial impact on patients.While informed patients with chronic illness have improved adherence and outcomes,previous research showed that the majority of IBD patients receive insufficient information regarding their disease.The large heterogeneity of IBD and the wide range of information topics makes a one-size fits all knowledge resource overwhelming and cumbersome.We hypothesized that different patient profiles may have different and specific information needs,the identification of which will allow building personalized computer-based information resources in the future.AIM To evaluate the scope of disease-related knowledge among IBD patients and determine whether different patient profiles drive unique information needs.METHODS We conducted a nationwide survey addressing hospital-based IBD clinics.A Total of 571 patients completed a 28-item questionnaire,rating the amount of information received at time of diagnosis and the importance of information,as perceived by participants,for a newly diagnosed patient,and for the participants themselves,at current time.We performed an exploratory factor analysis of the crude responses aiming to create a number of representative knowledge domains(factors),and analyzed the responses of a set of 15 real-life patient profiles generated by the study team.RESULTS Participants gave low ratings for the amount of information received at disease onset(averaging 0.9/5)and high ratings for importance,both for the newly diagnosed patients(mean 4.2/5)and for the participants themselves at current time(mean 3.5/5).Factor analysis grouped responses into six informationdomains.The responses of selected profiles,compared with the rest of the participants,yielded significant associations(defined as a difference in rating of>0.5 points with a P<0.05).Patients with active disease showed a higher interest in work-disability,stress-coping,and therapy-complications.Patients newly diagnosed at age>50,and patients with long-standing disease(>10 years)showed less interest in work-disability.Patients in remission with mesalamine or no therapy showed less interest in all domains except for nutrition and long-term complications.CONCLUSION We demonstrate unmet patient information needs.Analysis of various patient profiles revealed associations with specific information topics,paving the way for building patient-tailored information resources.
文摘AIM To characterize radiological and clinical factors associated with subsequent surgical intervention in Crohn's disease(CD) patients with intra-abdominal fistulae.METHODS From a cohort of 1244 CD patients seen over an eight year period(2006 to 2014), 126 patients were identified as having intra-abdominal fistulae, and included in the study. Baseline patient information was collected from the medical records. Imaging studies were assessed for: anatomic type and number of fistulae; diameter of the inflammatory conglomerate; length of diseased bowel; presence of a stricture with pre-stenotic dilatation; presence of an abscess; lymphadenopathy; and the degree of bowel enhancement. Multivariate analysis for the prediction of abdominal surgery was calculated via Generalized Linear Models.RESULTS In total, there were 193 fistulae in 132 patients, the majority(52%) being entero-enteric. Fifty-nine(47%) patients underwent surgery within one year of the imaging study, of which 36(29%) underwent surgery within one month. Radiologic features that were associated with subsequent surgery included: multiple fistulae(P = 0.009), presence of stricture(P = 0.02), and an entero-vesical fistula(P = 0.01). Evidence of an abscess, lymphadenopathy, or intense bowel enhancement as well as C-reactive protein levels was not associated with an increased rate of surgery. Patients who were treated after the imaging study with combination immunomodulatory and anti-TNF therapy had significantly lower rates of surgery(P = 0.01). In the multivariate analysis, presence of a stricture [RR 4.5(1.23-16.3), P = 0.02] was the only factor that increased surgery rate.CONCLUSION A bowel stricture is the only factor predicting an increased rate of surgery. Radiological parameters may guide in selecting treatment options in patients with fistulizing CD.
