Exploitable results
Background NOD2/CARD15, a susceptibility gene in Crohn s disease, is associated with ileal involvement, intestinal stenosis and increased frequency of surgery. Anti-Saccharomyces cerevisiae antibody (ASCA), a serological marker for Crohn's disease, is associated with ileal location and a high likelihood for surgery. We hypothesized that the presence of ASCA and NOD2/CARD15 mutations could predict an increased cost of health care in Crohn's disease.
Methods Crohn's disease patients in a prospectively-incepted community-based multinational European cohort had blood drawn for measurement of ASCA (IgG, IgA) and the NOD2/CARD15 mutations SNP8, SNP12 and SNP13. Days spent in hospital, surgical events, and consumption of major drugs (corticosteroids, immunosuppressives, biologicals) and 5-aminosalicylates were calculated. The cost of health care was calculated from use of resources and their median prices.
Findings Patients were followed for mean 8.3 [SD 2.6] years. The mean duration of medical hospitalizations was longer in the SNP12 positive patients than SNP12 negative patients, 6.4 [10.7] versus 2.5 [3.6] days/patient-year (p<0.01). The mean duration of surgical hospitalizations was longer in the SNP12 positive than SNP12 negative patients, 4.2 [3.9] versus 1.5 [2.8] days/patient-year (p<0.01). ASCA positive patients had a longer mean surgical hospitalization time than ASCA negative patients, 2.5 [7.7] and 1.2 [2.4] days/patient-year respectively (p<0.001. Mean medical hospitalization costs were 2380 [3938] /patient-year in SNP12 positive patients and 937 [1340] /patient-year in SNP12 negative patients (p<0.02). Mean surgical hospitalization costs totaled 1781 [1607] /patient-year in SNP12 positive and 664 [1226] /patient-year in SNP12 negative patients (p<0.02). The mean cost of surgical hospitalization was higher in ASCA positive than ASCA negative patients, 1134 [1532] and 542 [1075] /patient-year respectively. Allowance for skewed health care costs and for smoking did not detract from the effect of SNP12 and ASCA on surgical admissions and costs.
Interpretation A positive ASCA test or the presence of the NOD2/CARD15 mutation SNP12 was associated with longer and costlier surgical admissions. Genetic mutations and ASCA seem to be indicative of higher health care costs in Crohn's disease.
Communication and information have become crucial in everyday life and even more among doctors and patients, particularly when they deal with chronic non fatal disease like Ulcerative Colitis and Crohn�s Disease.
In order to improve communication and to set standards for good information to patients we studied the cohort of 1580 pts with Inflammatory Bowel Disease put together since 1990 by the EC-IBD Study Group. Within a larger survey of the ten years follow up of these patients, performed through a questionnaire and aimed to analyze disease outcome and costs, cancer risk, quality of life, pregnancy and fertility, genetics and other items, we introduced a short (10 questions) questionnaire developed together with the Department of Social Communication of the University of Bologna in order to find out from whom the patients actually get their information about disease, their degree of satisfaction, which media are more suitable to disseminate information, how the new computer technology is widespread and used among patients and lastly which are the most interesting topics in patients� view. The elaboration of the data offer an interesting picture of the attitude of chronic patients towards medical information that can be a starting point for a communication plan.
Background:
No previous correlation has been performed of phenotype at diagnosis of Crohn¿s disease patients and mortality. We assessed the predictive value of phenotype at diagnosis on overall and disease related mortality in a European cohort of CD patients.
Methods:
Overall and disease related mortality were recorded ten years after diagnosis in a prospectively assembled, uniformly diagnosed European population based inception cohort of 380 CD patients diagnosed between 1991 and 1993. Standardized Mortality Ratios (SMRs) were calculated for geographic and phenotypic subgroups at diagnosis.
Results:
Thirty-seven deaths were observed in the entire cohort, whereas 21.5 deaths were expected (SMR 1.85 , 95% CI: 1.30-2.55). Mortality risk was significantly increased in both females (SMR 1.93, 95% CI: 1.10-3.14) and males (SMR 1.79, 95% CI: 1.11-2.73). Patients from North European centres had a significant overall increased mortality risk (SMR 2.04, 95% CI: 1.32-3.01), whereas a tendency towards increased overall mortality risk was also observed in the South (SMR 1.55, 95% CI: 0.80-2.70). Mortality risk was increased in patients with colonic disease location and with inflammatory disease behaviour at diagnosis. Mortality risk was also increased in the age group above 40 years at diagnosis for both total and CD related causes. Excess mortality was mainly due to gastrointestinal causes that were related to CD.
Conclusion:
This European multinational population-based study revealed an increased overall mortality risk in Crohn¿s disease patients ten years after diagnosis and age above 40 years at diagnosis to be the sole factor associated with increased mortality risk.
Aim:
To describe an Internet-based data acquisition facility for a European 10-year clinical follow-up study project of a population-based cohort of IBD patients and to investigate the influence of demographic and disease related patient characteristics on response rates.
Materials and methods:
Thirteen years ago, the European Collaborative study group on IBD (EC-IBD) initiated a population based prospective inception cohort of 2201 uniformly diagnosed Inflammatory Bowel Disease (IBD) patients within twenty well-described geographical areas in twelve European countries and Israel. For the ten-year follow-up of this cohort, an electronic Patient Questionnaire (ePQ) and electronic Physician per Patient Follow-up form (ePpPFU) were designed as two separate data collecting instruments and made available through an Internet based website.
Independent demographic and clinical determinants of ePQ participation were analyzed using multivariate logistic regression.
Results:
In 958 (316 CD and 642 UC) out of a total number of 1505 [64%] available IBD patients, originating from thirteen participating centres from nine different countries, both ePQ and ePpPFU were completed. Patients older than 40 years at ePQ completion (Odds Ratio: 1.53 (95% Confidence Interval: 1.14-2.05)) and those with active disease during the three months previous to ePQ completion (Odds Ratio: 3.32 (95 % Confidence Interval: 1.57-7.03)) were significantly more likely to respond.
Conclusion:
An Internet based data acquisition tool appeared successful in sustaining a unique Western-European and Israelian multi-centre 10-year clinical follow-up study project in patients afflicted with IBD.
Background & Aims: Economic analysis in chronic diseases is a prerequisite for planning a proper distribution of health care resources. We aimed to determine the cost of inflammatory bowel disease, a lifetime illness with considerable morbidity. Methods: We studied 1321 patients from an inception cohort in eight European countries and Israel over ten years. Data on consumption of resources were obtained retrospectively.
Cost of health care was calculated from use of resources and their median prices. Data were analyzed using regression models based on the generalized estimating equations approach.
Results: The mean annual total expenditure on health care was 1871 /patient-year for inflammatory bowel disease, 1524 /patient-year for ulcerative colitis, and 2548 /patient-year for Crohn's disease (P < .001). The most expensive resources were medical and surgical hospitalizations, together accounting for 63% of the cost in Crohn¿s disease and 45% in ulcerative colitis. Total and hospitalization costs were much higher in the first year after diagnosis than subsequently. Differences of medical and surgical hospitalizations were the primary cause of substantial inter-country variations of cost; the mean cost of health care was 3705 /patient-year in Denmark and 888 /patient-year in Norway. The outlay on 5-aminosalicylate, a costly medication with extensive use, was greater than on all other drugs combined. Age at diagnosis and sex did not affect costs. Conclusions: In this multinational, population-based, time-dependent characterization of the health care cost of inflammatory bowel disease, increased expenditure was driven largely by country, diagnosis, hospitalization and follow-up year.
Objectives
Inflammatory bowel disease (IBD) often affects patients in their fertile age. The aim of this study was to describe pregnancy outcome in a European cohort of IBD patients. As data is limited regarding the effect of pregnancy on disease course, our second objective was to investigate whether pregnancy influences disease course and phenotype in IBD patients.
Methods
In a European cohort of IBD patients, a 10-year follow-up was performed by scrutinizing patient files and approaching the patients with a questionnaire. The cohort comprised 1125 patients, of whom 543 were women. Data from 173 female UC and 93 CD patients form the basis for the present study.
Results
In all 580 pregnancies, 403 occurring before and 177 after IBD was diagnosed were reported. The rate of spontaneous abortion increased after IBD was diagnosed (6.5% vs. 13%, p=0.005), whereas elective abortion was not significantly different. 48.6% of the patients took medication at time of conception and 46.9% during pregnancy. The use of caesarean section increased after IBD diagnose (8.1% vs. 28.7% of pregnancies). CD patients pregnant during disease course, did not differ from patients not pregnant during disease course regarding development of stenosis (37% vs. 52% p=0.13) and resection rates (mean number of resections 0.52 vs. 0.66, p=0.37). The rate of relapse decreased in the years following pregnancy in both UC (0.34 vs. 0.18 flares/year, p=0.008) and CD patients (0.76 vs. 0.12 flares/year, p=0.004).
Conclusions
Pregnancy did not influence disease phenotype or surgery rates, but was connected to a reduced number of flares in the following years.
Background & aims: In Crohn's disease (CD), studies associating phenotype at diagnosis and subsequent long-term disease course are important for patient counselling and health care planning.
Methods:
A prospectively assembled uniformly diagnosed European population-based inception cohort of CD patients was classified according to the Vienna Classification for disease phenotype at diagnosis. Surgical and non-surgical recurrence rates throughout a ten-year follow-up period were calculated. Multivariate analysis was performed to classify risk factors present at diagnosis for recurrent disease.
Results:
A total of 358 were classified for phenotype at diagnosis of whom 262 (73.2%) had a first recurrence and 113 patients (31.6%) a first surgical recurrence during the first 10 years after diagnosis. Patients with upper gastrointestinal disease at diagnosis had excess risk of recurrences (Hazard Ratio (HR): 1.54, 95% Confidence Interval (CI): 1.13 - 2.10) whereas age = 40 years at diagnosis was protective (HR: 0.82, 95% CI: 0.70 - 0.97). Colonic disease was a protective characteristic for resective surgery (HR: 0.38, 95% CI: 0.21 - 0.69). More frequent resective surgical recurrences were reported from Copenhagen (HR: 3.23, 95% CI: 1.32 - 7.89).
Conclusions:
A mild course of disease in terms of disease recurrence was observed in this European cohort. Phenotype at diagnosis had predictive value for disease recurrence with upper gastro-intestinal disease being the most important positive predictor. A phenotypic North-South gradient in CD may be present illustrated by higher surgery risks in some of the Northern-European centres.
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