| 1. |
- Burisch, Johan, et al.
(författare)
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Costs and resource utilization for diagnosis and treatment during the initial year in a European inflammatory bowel disease inception cohort : an ECCO-EpiCom Study
- 2015
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Ingår i: Inflammatory Bowel Diseases. - 1078-0998 .- 1536-4844. ; 21:1, s. 121-131
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: No direct comparison of health care cost in patients with inflammatory bowel disease across the European continent exists. The aim of this study was to assess the costs of investigations and treatment for diagnostics and during the first year after diagnosis in Europe.METHODS: The EpiCom cohort is a prospective population-based inception cohort of unselected inflammatory bowel disease patients from 31 Western and Eastern European centers. Patients were followed every third month from diagnosis, and clinical data regarding treatment and investigations were collected. Costs were calculated in euros (&OV0556;) using the Danish Health Costs Register.RESULTS: One thousand three hundred sixty-seven patients were followed, 710 with ulcerative colitis, 509 with Crohn's disease, and 148 with inflammatory bowel disease unclassified. Total expenditure for the cohort was &OV0556;5,408,174 (investigations: &OV0556;2,042,990 [38%], surgery: &OV0556;1,427,648 [26%], biologicals: &OV0556;781,089 [14%], and standard treatment: &OV0556;1,156,520 [22%)]). Mean crude expenditure per patient in Western Europe (Eastern Europe) with Crohn's disease: investigations &OV0556;1803 (&OV0556;2160) (P = 0.44), surgery &OV0556;11,489 (&OV0556;13,973) (P = 0.14), standard treatment &OV0556;1027 (&OV0556;824) (P = 0.51), and biologicals &OV0556;7376 (&OV0556;8307) (P = 0.31). Mean crude expenditure per patient in Western Europe (Eastern Europe) with ulcerative colitis: investigations &OV0556;1189 (&OV0556;1518) (P < 0.01), surgery &OV0556;18,414 (&OV0556;12,395) (P = 0.18), standard treatment &OV0556;896 (&OV0556;798) (P < 0.05), and biologicals &OV0556;5681 (&OV0556;72) (P = 0.51).CONCLUSIONS: In this population-based unselected cohort, costs during the first year of disease were mainly incurred by investigative procedures and surgeries. However, biologicals accounted for >15% of costs. Long-term follow-up of the cohort is needed to assess the cost-effectiveness of biological agents.
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| 2. |
- Burisch, Johan, et al.
(författare)
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Disease course of inflammatory bowel disease unclassified in a European population-based inception cohort : an Epi-IBD study
- 2019
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Ingår i: Journal of Gastroenterology and Hepatology. - : John Wiley & Sons. - 0815-9319 .- 1440-1746. ; 34:6, s. 996-1003
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: A definitive diagnosis of Crohn's disease (CD) or ulcerative colitis (UC) is not always possible and a proportion of patients will be diagnosed as inflammatory bowel disease unclassified (IBDU). The aim of the study was to investigate the prognosis of patients initially diagnosed with IBDU and the disease course during the following five years.METHODS: The Epi-IBD study is a prospective population-based cohort of 1,289 IBD patients diagnosed in centres across Europe. Clinical data were captured prospectively throughout the follow-up period.RESULTS: Overall, 476 (37%) patients were initially diagnosed with CD, 701 (54%) with UC, and 112 (9%) with IBDU. During follow-up, 28 (25%) IBDU patients were changed diagnoses to either UC (n=20, 71%) or CD (n=8, 29%) after a median of six months (IQR: 4-12), while 84 (7% of the total cohort) remained IBDU. A total of 17 (15%) IBDU patients were hospitalized for their IBD during follow-up, while 8 (7%) patients underwent surgery. Most surgeries (n=6, 75%) were performed on patients whose diagnosis was later changed to UC; three of these colectomies led to a definitive diagnosis of UC. Most patients (n=107, 96%) received 5-aminosalicylic acid, while 11 (10%) patients received biologicals, of whom five remained classified as IBDU.CONCLUSIONS: In a population-based inception cohort, 7% of IBD patients were not given a definitive diagnosis of IBD after five years of follow-up. One in four patients with IBDU eventually were classified as CD or UC. Overall, the disease course and medication burden in IBDU patients were mild.
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| 3. |
- Burisch, Johan, et al.
(författare)
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Initial Disease Course and Treatment in an Inflammatory Bowel Disease Inception Cohort in Europe : The ECCO-EpiCom Cohort
- 2014
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Ingår i: Inflammatory Bowel Diseases. - : Lippincott Williams & Wilkins. - 1078-0998 .- 1536-4844. ; 20:1, s. 36-46
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Tidskriftsartikel (refereegranskat)abstract
- Background:The EpiCom cohort is a prospective, population-based, inception cohort of inflammatory bowel disease (IBD) patients from 31 European centers covering a background population of 10.1 million. The aim of this study was to assess the 1-year outcome in the EpiCom cohort.Methods:Patients were followed-up every third month during the first 12 (3) months, and clinical data, demographics, disease activity, medical therapy, surgery, cancers, and deaths were collected and entered in a Web-based database (www.epicom-ecco.eu).Results:In total, 1367 patients were included in the 1-year follow-up. In western Europe, 65 Crohn's disease (CD) (16%), 20 ulcerative colitis (UC) (4%), and 4 IBD unclassified (4%) patients underwent surgery, and in eastern Europe, 12 CD (12%) and 2 UC (1%) patients underwent surgery. Eighty-one CD (20%), 80 UC (14%), and 13 (9%) IBD unclassified patients were hospitalized in western Europe compared with 17 CD (16%) and 12 UC (8%) patients in eastern Europe. The cumulative probability of receiving immunomodulators was 57% for CD in western (median time to treatment 2 months) and 44% (1 month) in eastern Europe, and 21% (5 months) and 5% (6 months) for biological therapy, respectively. For UC patients, the cumulative probability was 22% (4 months) and 15% (3 months) for immunomodulators and 6% (3 months) and 1% (12 months) for biological therapy, respectively in the western and eastern Europe.Discussion:In this cohort, immunological therapy was initiated within the first months of disease. Surgery and hospitalization rates did not differ between patients from eastern and western Europe, although more western European patients received biological agents and were comparable to previous population-based inception cohorts.
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| 4. |
- Burisch, Johan, et al.
(författare)
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Natural Disease Course of Ulcerative Colitis During the First Five Years of Follow-up in a European Population-based Inception Cohort-An Epi-IBD Study
- 2019
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Ingår i: Journal of Crohn's & Colitis. - : Oxford University Press. - 1873-9946 .- 1876-4479. ; 13:2, s. 198-208
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Tidskriftsartikel (refereegranskat)abstract
- Background and Aims: Few population-based cohort studies have assessed the disease course of ulcerative colitis [UC] in the era of biological therapy and widespread use of immunomodulators. The aim of this study was to assess the 5-year outcome and disease course of patients with UC in the Epi-IBD cohort.Methods: In a prospective, population-based inception cohort of unselected patients with UC, patients were followed up from the time of their diagnosis, which included the collection of their clinical data, demographics, disease activity, medical therapy, and rates of surgery, cancers, and deaths. Associations between outcomes and multiple covariates were analysed by Cox regression analysis.Results: A total of 717 patients were included in the study. During follow-up, 43 [6%] patients underwent a colectomy and 163 [23%] patients were hospitalised. Of patients with limited colitis [distal to the left flexure], 90 [21%] progressed to extensive colitis. In addition, 92 [27%] patients with extensive colitis experienced a regression in disease extent, which was associated with a reduced risk of hospitalisation (hazard ratio [HR]: 0.5 95% CI: 0.3-0.8]. Overall, patients were treated similarly in both geographical regions; 80 [11%] patients needed biological therapy and 210 [29%] patients received immunomodulators. Treatment with immunomodulators was found to reduce the risk of hospitalisation [HR: 0.5 95% CI: 0.3-0.8].Conclusions: Although patients in this population-based cohort were treated more aggressively with immunomodulators and biological therapy than in cohorts from the previous two decades, their disease outcomes, including colectomy rates, were no different. However, treatment with immunomodulators was found to reduce the risk of hospitalisation.
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| 5. |
- Burisch, Johan, et al.
(författare)
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Occurrence of anaemia in the first year of inflammatory bowel disease in a European population-based inception cohort : An ECCO-EpiCom study
- 2017
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Ingår i: Journal of Crohn's & Colitis. - : Oxford University Press. - 1873-9946 .- 1876-4479. ; 11:10, s. 1213-1222
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Tidskriftsartikel (refereegranskat)abstract
- Background and aims: Anaemia is an important complication of inflammatory bowel disease (IBD). The aim of this study was to determine the prevalence of anaemia and the practice of anaemia screening during the first year following diagnosis in a European prospective population-based inception cohort.Methods: Newly diagnosed IBD patients were included and followed prospectively for one year in 29 European and 1 Australian centre. Clinical data including demographics, medical therapy, surgery and blood samples were collected. Anaemia was defined according to the World Health Organization.Results: A total of 1,871 patients (CD: 686, 88%; UC: 1,021, 87%; IBDU 164. 81%) were included in the study. The prevalence of anaemia was higher in CD than in UC patients and overall, 49% of CD and 39% of UC patients had at least one instance of anaemia during the first 12 months after diagnosis. UC patients with more extensive disease and those from Eastern European countries, and CD patients with penetrating disease or colonic disease location, had higher risks of anaemia. CD and UC patients in need of none or only mild anti-inflammatory treatment had a lower risk of anaemia. In a significant proportion of patients, anaemia was not assessed until several months after diagnosis, and in almost half of all cases of anaemia a thorough work-up was not performed.Conclusions: Overall, 42% of patients had at least one instance of anaemia during the first year following diagnosis. Most patients were assessed for anaemia regularly; however, a full anaemia work-up was frequently neglected in this community setting.
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| 6. |
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| 7. |
- Luisa Mearin, M, et al.
(författare)
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European multi-centre study on coeliac disease and non-Hodgkin lymphoma.
- 2006
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Ingår i: European Journal of Gastroenterology and Hepathology. - 0954-691X .- 1473-5687. ; 18:2, s. 187-194
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Coeliac disease (CD) is associated with an increased risk of non-Hodgkin lymphoma (NHL), but there is little information about whether this is true for clinically silent CD. Objective: To investigate the frequency of CD in two European populations; one with NHL and another derived from the general population. Methods: A prospective, multi-centre, case-control study in 10 European countries was conducted between May 1998 and April 2001. A total of 1446 consecutive patients with newly diagnosed NHLaged over 18 years was collected. The control group consisted of a population of 9676 individuals who were screened for CD. The number of patients with a previous diagnosis of CD and those with silent CD detected by screening were determined in the two groups. Results: The patients with CD had a significantly increased risk of developing NHL [odds ratio (OR) 2.6, 95% confidence interval (CI) 1.4-4.9]. This risk was only present in patients with CD diagnosed clinically before the study (OR 3.3, 95% CI 1.4-7.9), but not in those with silent CD detected by screening (OR 1.3, 95% CI 0.6-2.7). Conclusion: Patients with CD have an increased risk of developing NHL, although this is lower than previously thought. Clinically silent CD is rare in patients with NHL.
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| 8. |
- Norström, Fredrik, 1974-
(författare)
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The burden of celiac disease and the value of having it diagnosed
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Celiac disease is a chronic disease characterized by intolerance to gluten. It is considered a public health problem affecting about 1% of Western populations, but, with most cases still undiagnosed. A glutenfree diet is the only effective treatment for the disease. Objectives: To investigate the burden of celiac disease and the value of having it diagnosed. Additionally, the implications for a potential future celiac disease mass screening are discussed. Methods: A questionnaire was sent during 2009 to 1,560 randomly selected adult members of the Swedish Society for Coeliacs, in equal-sized age- and sex strata, and 1,031 (66%) responded. Members were asked about symptoms, health-related quality of life as measured by EQ-5D, and health care consumption during the year prior to diagnosis and during the past year. They were also asked about the delay in having their celiac disease diagnosed and the appearance of other immune-mediated diseases. A school-based celiac disease screening of 12-year-olds was performed during 2005-2006. After blood sampling the 7,567 participating children and their parents received a questionnaire including the EQ-5D instrument in order to measure the child’s health-related quality of life. Comparisons were made between children with screening-detected celiac disease, those with previously diagnosed disease and those without the disease. Parents were asked about their willingness to pay for a celiac disease screening of their child, which was compared with the actual cost of a screening. Results: Adult celiac disease patients had a poorer health-related quality of life than the general population, and a high prevalence of symptoms before celiac disease diagnosis. The mean delay from symptoms to diagnosis was 9.7 years. After initiated treatment with a gluten-free diet, health-related quality of life was improved to the level of the general population, and symptom relief and reduction in health care consumption were also reported. For children, health-related quality of life was similar across groups. The average cost per child for a screening was 47 EUR. Parents’ mean willingness to pay for a screening was 79 EUR, median 10 EUR. Conclusion: The delay in celiac disease diagnosis is long, and treatment with a gluten-free diet substantially improved health for clinically detected cases. For screening-detected celiac disease the health benefits are still uncertain. A mass screening might nevertheless be justified to avoid the burden of living with undiagnosed disease, and parents’ willingness to pay indicates that performing it in childhood might be economically motivated. However, as both the cost-effectiveness of a screening and the short- and long term health benefits for screening-detected cases have not yet been sufficiently investigated, it is too early to make a recommendation for a celiac disease mass screening.
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| 9. |
- Roos, Susanne, 1961-
(författare)
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Living with coeliac disease beyond the diagnosis
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Studies show that women living in Sweden treated for coeliac disease have lower subjective health than other women. After showing signs of remission, adults who have coeliac disease and follow a gluten-free diet, are expected to handle the treatment without any further planned follow-up by health care.Aim: The overall aim of this thesis was to study aspects of living with coeliac disease in adults in the years beyond the diagnosis.Methods: Quantitative methods were used in Studies I, II and III. A qualitative content analysis was performed in Study IV.Results: The results show that women with coeliac disease have a lower level of well-being than men with coeliac disease. The women who have coeliac disease reported a high rate of gastrointestinal symptoms, although they followed a gluten-free diet, and they visited health care services more frequently than women who did not have coeliac disease. A low rate of gastrointestinal symptoms, a positive self-image and few comorbidity emerged as factors that positively affected well-being. Worries also seemed to be a companion of women diagnosed with coeliac disease in adulthood, typically evident when socializing with others.Conclusion: This thesis may provide evidence questioning the validity of declaring all women with coeliac disease showing a normalized intestinal mucosa to be in remission, and thus leaving them to self-management.Clinical implications: Health care professionals need to be aware of that the transition to a gluten-free life may vary for individuals. It does not seem enough to follow a gluten-free diet to reach a state of good well-being for all women. A major task for health care providers is therefore to support women with CD in reaching better subjective treatment outcomes. The results may also contribute to that health care system develops routines in order to optimise the care and treatment of these patients.
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| 10. |
- Valdimarsson, Trausti
(författare)
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Bone in coeliac disease
- 1999
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Patients with untreated and treated coeliac disease were examined regarding bone mineral density (BMD) and biochemical factors of importance for bone metabolism. The occurrence of disturbances and their correction during treatment with a gluten-free diet were studied. BMD was measured in the forearm using single photon absorptiometry and in the hip and spine using dual-energy X-ray absorptiometry.Among the 288 adult patients with known coeliac disease in our catchment area, 13 patients with persistent villous atrophy of the proximal small bowel mucosa despite dietary recommendation were identified and compared with matched control-patients whose intestinal mucosa had normalised at least 4 years earlier. BMD was reduced in patients with persistent villous atrophy but within normal limits in patients responsive to the diet.In 105 adult patients with untreated coeliac disease, HN.ID was reduced compared to a local healthy control group. During the first year on a gluten-free diet the BMD increased rapidly (by a median of 3 %in the spine) even in patients with minor symptoms and in older patients. Secondary hyperparathyroidism was found in 27% of untreated patients and these patients had more severely reduced BMD compared to those with normal initial parathyroid hormone. Twenty-three % of the untreated patients also had low serum calcidiol (25-hydroxyvitarnin D) levels. BMD continued to increase in the second and third follow-up years, but only became normal within three years in the group of patients without initial secondary hyperparathyroidism.In 29 consecutive adult patients with untreated coeliac disease, serum insulin-like growth factor I and BMD were lower than in matched controls. In 14 untreated patients with normal parathyroid hormone values the increase in insulin-like growth factor I correlated positively to the increase in BMD during the first year after starting a gluten-free diet.In 46 adult patients with coeliac disease trt;atedfor 8-12 years in routine care, median BMD was normal but five patients who did not follow strict gluten-free diet had a lower BMD in the femoral neck than the group of 41 patients who claimed strict adherence.TI1ese studies show that untreated coeliac disease is associated with a low B:MD. BMD inereases rapidly when a gluten-free diet is followed, even in older patients. Circulating insulin-like growth factor I may reflect some changes in hone metabolism but its pathogenetic role behind the low BMD seen in adults with coeliac disease is unclear. Secondary hyperparathyroidism is common and vitamin D deficiency also seems to be an important underlying mechanism. These findings underline the importance of a gluten-free diet for all patients with coeliac disease.
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