| 1. |
- Eberhardson, Michael, et al.
(author)
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Tumour necrosis factor inhibitors in Crohn's disease and the effect on surgery rates
- 2022
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In: Colorectal Disease. - : Wiley. - 1462-8910 .- 1463-1318. ; 24:4, s. 470-483
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Journal article (peer-reviewed)abstract
- Aim: Surgery is an important therapeutic option for Crohn's disease. The need for first bowel surgery seems to have decreased with the introduction of tumour necrosis factor inhibitors (TNFi; adalimumab or infliximab). However, the impact of TNFi on the need for intestinal surgery in Crohn's disease patients irrespective of prior bowel resection is not known. The aim of this work is to compare the incidence of bowel surgery in Crohn's disease patients who remain on TNFi treatment versus those who discontinue it. Method: We performed a nationwide register-based observational cohort study in Sweden of all incident and prevalent cases of Crohn's disease who started first-line TNFi treatment between 2006 and 2017. Patients were categorized according to TNFi treatment retention less than or beyond 1 year. The study cohort was evaluated with regard to incidence of bowel surgery from 12 months after the first ever TNFi dispensation. Results: We identified 5003 Crohn's disease patients with TNFi exposure: 3748 surgery naïve and 1255 with bowel surgery prior to TNFi initiation. Of these patients, 7% (n = 353) were subjected to abdominal surgery during the first 12 months after the start of TNFi and were subsequently excluded from the main analysis. A majority (62%) continued TNFi for 12 months or more. Treatment with TNFi for less than 12 months was associated with a significantly higher surgery rate compared with patients who continued on TNFi for 12 months or more (hazard ratio 1.26, 95% CI 1.09–1.46; p = 0.002). Conclusion: Treatment with TNFi for less than 12 months was associated with a higher risk of bowel surgery in Crohn's disease patients compared with those who continued TNFi for 12 months or more.
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| 2. |
- Jäghult, Susanna, et al.
(author)
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A multiprofessional education programme for patients with inflammatory bowel disease : a randomized controlled trial
- 2007
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In: Scandinavian Journal of Gastroenterology. - : Informa UK Limited. - 0036-5521 .- 1502-7708. ; 42:12, s. 1452-1459
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Journal article (peer-reviewed)abstract
- OBJECTIVE: Health-related quality of life is impaired in patients with inflammatory bowel disease and improved disease-related information can improve this situation. The aims of this study were to create an education programme that could be readily applicable at the clinic and would be suitable for newly diagnosed patients with inflammatory bowel disease, and to investigate whether the programme could improve their health-related quality of life.MATERIAL AND METHODS: Ninety-three patients with inflammatory bowel disease in remission were included and randomized to an intervention group or a control group. The intervention group attended a multiprofessional education programme while the control group received regular information. Four questionnaires were used for measuring health-related quality of life. Both groups completed the questionnaires at baseline and after 6 months. The intervention group also completed the questionnaires after 1 month.RESULTS: No significant differences were found when comparing the two groups at 6 months. However, the multi-professional education programme was highly appreciated by the patients.CONCLUSIONS: In the present study no improvement could be seen in health-related quality of life in patients with inflammatory bowel disease after participating in an education programme in comparison with the control group. This might be due to the fact that the questionnaires were not sensitive enough or that some patients were not in clinical remission. The patients' enthusiasm for the multiprofessional education programme has led to its being part of the regular care at the clinic.
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| 3. |
- Jäghult, Susanna, et al.
(author)
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Factor structures of the Swedish version of the RFIPC : investigating the validity of measurements of IBD patient's worries and concerns
- 2010
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In: Gastroenterology Research. - : Elmer Press, Inc.. - 1918-2805. ; 3:5, s. 191-200
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Journal article (peer-reviewed)abstract
- Background: Worries and concerns of patients with IBD comprise an important negative factor in their HRQOL. The Rating Form of Inflammatory Bowel Disease Patient Concerns (RFIPC) was developed to describe the nature and degree of the worries and concerns of IBD patients. In the original version, the specific issues of worries are divided into four separate factors. These factors provide useful information about HRQOL and the kind of worries and concerns which are most important to the patient. However, the Swedish version of the RFIPC is often scored using a single sum score, implying that all the specific issues of worries stem from a single general worry factor. The aim of this study was to validate the factor structure of the Swedish version of the RFIPC.Methods: A sample consisting of 195 patients with IBD filled out the RFIPC. Confirmatory factor analysis was performed to examine fit of three hypothesized models of factor structure. Spearman’s correlation and Mann-Whitney analysis were used to follow up the results.Results: The single-factor model displayed poor fit indices. The four-factor model marked substantive improvement, but still remains inadequate. The final four-factor model permitting correlated error terms between some items displayed the most adequate fit. Conclusions: The factorial structure of the RFIPC, as suggested in the original version, was able to be replicated with a slight modification in the Swedish version. The separate factors identified in this structure provide more detailed information about the worries and concerns of IBD patients as these components of worries are different related to HRQOL and general health.
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| 4. |
- Jäghult, Susanna, et al.
(author)
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Identifying predictors of low health-related quality of life among patients with inflammatory bowel disease : comparison between Crohn's disease and ulcerative colitis with disease duration
- 2011
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 20:11-12, s. 1578-1587
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Journal article (peer-reviewed)abstract
- Aim. To identify predictors of low health-related quality of life among patients with inflammatory bowel disease and make a comparison between Crohn's disease and ulcerative colitis with disease duration. Background. Studies have shown that patients with inflammatory bowel disease rate their health-related quality of life lower, as compared with a general population. Design. Survey. Methods. In this study, 197 patients in remission were included and divided into a Crohn's disease group and an ulcerative colitis group. Each group was also divided into separate groups whether the patients had short disease duration or long disease duration. Generic instruments, combined with disease-specific questionnaires, were used for measuring health-related quality of life. Results. The analysis showed a non-significant effect for diagnosis, but a significant effect for disease duration showing that the patients with short disease duration had lower scores of health-related quality of life compared with patients with long disease duration. A significant interaction between diagnosis and disease duration was also revealed. Conclusion. Patients with longer disease duration experienced a better health-related quality of life than patients with short disease duration. Patients with Crohn's disease and short disease duration have the lowest health-related quality of life and are in greatest need of education and support. Relevance to clinical practice. It is important to identify which patients' are in the greatest need of education and support.
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| 5. |
- Jäghult, Susanna
(author)
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Living with inflammatory bowel disease : health-related quality of life, worries, and stress
- 2012
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Doctoral thesis (other academic/artistic)abstract
- Background: Patients with inflammatory bowel disease have a number of worries and concerns related to the disease, and in comparison with a general population their health-related quality of life is impaired. These patients need disease-related information and education. However, it remains unclear how this information should be provided in order to decrease their worries and concerns, and improve their health- related quality of life. Disease activity is one of the most important factors for reduced health-related quality of life. Therefore it is also important to assess more information about trigger factors for relapses in inflammatory bowel disease. Aim: The general aim of this thesis was to gain scientific evidence about worries and concerns, health-related quality of life, and trigger factors for relapses, and to develop and evaluate an education programme. Method: In all four studies the patients included were diagnosed with inflammatory bowel disease, and in remission. In Study I, 93 patients were included and randomized to an intervention group or a control group. The intervention group attended a group- based education programme. Health-related quality of life was measured at baseline and after six months, by using four questionnaires. The intervention group also completed the questionnaires after one month. In Study II, 197 patients were included and divided into a Crohn’s disease group and an ulcerative colitis group. Each group was also divided into separate groups according to whether the patients had short disease duration or long disease duration. Health-related quality of life was measured using four questionnaires. In Study III, a sample of 195 patients was included. They filled in the RFIPC, and two other questionnaires measuring health-related quality of life. Confirmatory factor analysis was performed to validate the factor structure in the Swedish version of the RFIPC and to examine fit of different hypothesized models of factor structure. In Study IV, 60 patients were included. They filled in a structured diary daily during six months in order to collect information about symptoms and potential trigger factors, such as perceived stress. Results: No difference could be found in health-related quality of life between patients with ulcerative colitis and Crohn’s disease. Scores of health-related quality of life were lower for patients with short disease duration than for patients with long disease duration. Patients with Crohn’s disease and short disease duration had the lowest health-related quality of life. After attending an education programme, an improvement was found in the intervention group when measurements were made after one month. After six months, no improvement could be shown in health-related quality of life when comparing the intervention group with the control group. The RFIPC is the most appropriate choice when measuring health-related quality of life, worries and concerns. Using the single-factor model (sum score) displayed poor fit indices. The factorial structure of the RFIPC, as suggested in the original version, could be replicated with a slight modification in the Swedish version and showed the most adequate fit. Perceived stress can act as a trigger for relapses in inflammatory bowel diseases. A high level of perceived stress was found to have an effect when stratifying level of stress. High level of stress one day increased the risk of relapse the next day. Conclusion: CD patients with short disease duration have the greatest need of education and support. No improvement could be seen in health-related quality of life after attending an education programme. The separate factors in RFIPC provide more detailed information about patients’ disease-related worries and concerns in both research and clinical settings. This may help healthcare professionals to provide each patient with the appropriate education and support. Identification of trigger factors for relapses in inflammatory bowel disease also makes it possible to influence the trigger. By extension, this could decrease the number of relapses and improve health-related quality of life.
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| 6. |
- Latteur, Jack, et al.
(author)
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Construct validity of EQ-5D-5L among patients with inflammatory bowel disease — a study based on real-world data from the Swedish Inflammatory Bowel Disease Registry
- 2024
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In: Journal of Patient-Reported Outcomes. - : Springer. - 2509-8020. ; 8
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Journal article (peer-reviewed)abstract
- ObjectivesThe Swedish Inflammatory Bowel Disease Registry (SWIBREG) includes approximately 84% of all patients with inflammatory bowel disease (IBD) treated with immunomodulators, biologics or surgery in Sweden. Data on health-related quality of life (HRQoL) have been collected using EQ-5D-5L in the registry since 2012. Nevertheless, there are few studies assessing the validity of EQ-5D-5L in this patient population. Thus, the aim of this study was to assess the construct validity of EQ-5D-5L amongst patients with IBD (ulcerative colitis and Crohn’s disease).MethodsIndividual-level data on EQ-5D-5L and other disease-specific measures were extracted from SWIBREG. Known-groups validity was assessed by analysing whether the EQ-5D-5L captured expected differences between patient groups with different activity levels of the disease. Convergent validity was assessed by analysing whether the reported problems in the dimensions of EQ-5D-5L, EQ VAS, and the EQ-5D-5L index value correlated, as hypothesized, with the four dimensions in the Short Health Scale, a symptom index question, and the Physician Global Assessment (PGA) score.ResultsIn total, 9769 patients with IBD were included in the study. Patients with active IBD reported more health problems in the EQ-5D-5L descriptive system than patients being in remission. The effect sizes for the differences in reported problems between patients with active and inactive disease were at least small (≥0.1) or medium (≥0.3) in all dimensions except self-care. Differences in the mean EQ-5D-5L index and EQ-VAS score between patients with active and inactive disease were statistically significant (p < 0.001) and larger than pre-defined cut-offs for minimally important differences (>0.08 for the index and >11.0 for EQ-VAS). The analysis of convergent validity showed that EQ-5D-5L results correlated as expected with the disease-specific measures in 16 of the 21 analyses. In total, 22 (79%) of the 28 hypotheses were supported.ConclusionThe findings support the construct validity of EQ-5D-5L amongst patients with IBD and contribute to the scarce literature on the validity of the five-level version of EQ-5D in this patient population. These findings have important implications for the choice of HRQoL measure in routine health care registries like SWIBREG as well as for future clinical or health economic studies considering using EQ-5D-5L as a measure of HRQoL.
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| 7. |
- Ludvigsson, Jonas F., 1969-, et al.
(author)
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Swedish Inflammatory Bowel Disease Register (SWIBREG) : a nationwide quality register
- 2019
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In: Scandinavian Journal of Gastroenterology. - : Taylor & Francis. - 0036-5521 .- 1502-7708. ; 54:9, s. 1089-1101
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Research review (peer-reviewed)abstract
- Background: Inflammatory bowel disease (IBD) is a chronic, inflammatory relapsing disease with increasing incidence. IBD research and long-term follow-up of patients have, however, been hampered by lack of detailed data on disease phenotype, patient-reported outcome measures, Physician Global Assessment, disease activity, and hospital-administered drugs.Aim: To review the Swedish IBD quality register (SWIBREG).Methods: Review of SWIBREG including questionnaire data from users and patients.Results: SWIBREG was launched in 2005, and as of April 2019, contains 46,400 patients with IBD (Crohn's disease: n = 15,705, ulcerative colitis: n = 21,540, IBD unclassified and other colitis (including e.g., microscopic colitis): n = 9155). Of these IBD patients, 7778 had been diagnosed in childhood (16.8%). Earlier research has shown that combining SWIBREG and the Swedish National Patient Register (NPR) yields a positive predictive value of 100% (95%CI = 95-100%) for having a diagnosis of IBD. Moreover, out of all patients in the NPR with a diagnosis of IBD plus either IBD-related surgery or immunomodulatory/biological treatment during the past 18 months, SWIBREG covers 59.0%. SWIBREG records not only information on conventional therapies but also on biological treatment, surgery, smoking, disease activity, patient-reported outcome measures (PROMs), and patient-experienced measures (PREMs). Data are presented through a graphical decision support system.Conclusion: SWIBREG benefits patients with IBD, and offers an ideal opportunity for healthcare personnel and researchers to examine disease phenotype and activity, PROMs/PREMs, and hospital-administered drugs in patients with IBD.
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| 8. |
- Mårild, Karl, 1982, et al.
(author)
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Histological activity in inflammatory bowel disease and risk of serious infections : A nationwide study
- 2024
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In: Clinical Gastroenterology and Hepatology. - : Elsevier. - 1542-3565 .- 1542-7714. ; 22:4, s. 831-846
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Journal article (peer-reviewed)abstract
- BACKGROUND AND AIMS: Individuals with inflammatory bowel disease (IBD) are at increased risk of serious infections, but whether this risk varies by histological disease activity is unclear.METHODS: A national population-based study of 55,626 individuals diagnosed with IBD in 1990-2016 with longitudinal data on ileo-colorectal biopsies followed through 2016. Serious infections were defined as having an inpatient infectious disease diagnosis in the Swedish National Patient Register. We used Cox regression to estimate hazard ratios (HRs) for serious infections in the 12 months following documentation of histologic inflammation (vs. histological remission), adjusting for social and demographic factors, chronic comorbidities, prior IBD-related surgery and hospitalization. We also adjusted for IBD-related medications in sensitivity analyses.RESULTS: With histological inflammation vs. remission, there was 4.62 (95%CI=4.46-4.78) and 2.53 (95%CI=2.36-2.70) serious infections per 100 person-years of follow-up, respectively (adjusted [a]HR=1.59; 95%CI=1.48-1.72). Histological inflammation (vs. remission) were associated with an increased risk of serious infections in ulcerative colitis (UC, aHR=1.68; 95%CI=1.51-1.87) and Crohn's disease (CD, aHR=1.59; 95%CI=1.40-1.80). The aHRs of sepsis and opportunistic infections were 1.66 (95%CI=1.28-2.15) and 1.71 (95%CI=1.22-2.41), respectively. Overall, results were consistent across age groups, sex and education level and remained largely unchanged after adjustment for IBD-related medications (aHR=1.47; 95%CI=1.34-1.61).CONCLUSION: Histological inflammation of IBD was an independent risk factor of serious infections, including sepsis, suggesting that achieving histological remission may reduce infections in IBD.
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| 9. |
- Rundquist, Sara, 1992-, et al.
(author)
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Clinical effectiveness of golimumab in Crohn's disease : an observational study based on the Swedish National Quality Registry for Inflammatory Bowel Disease (SWIBREG)
- 2018
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In: Scandinavian Journal of Gastroenterology. - : Taylor & Francis. - 0036-5521 .- 1502-7708. ; 53:10-11, s. 1257-1263
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Journal article (peer-reviewed)abstract
- OBJECTIVE: The effectiveness of golimumab in Crohn's disease (CD) is largely unknown as it is not approved for the treatment of the disease. We aimed to identify the population of CD patients treated with golimumab in Sweden, to assess the effectiveness of golimumab (defined as the drug retention rate), and to identify predictors of drug discontinuation.METHODS: Patients with CD who received at least one injection of golimumab were identified through the Swedish National Quality Registry for Inflammatory Bowel Disease, which includes prospectively collected clinical information. Cox regression models were used to identify predictors of golimumab discontinuation.RESULTS: The study cohort involved 94 patients of whom the majority (96.8%) had previously discontinued at least one anti-tumour necrosis factor (anti-TNF) agent. The drug retention rate at 12 weeks was 85.1%. Predictors of golimumab discontinuation at 12 weeks were previous surgery (adjusted HR = 7.52, 95% CI: 1.12-50.36), concomitant corticosteroid use at baseline (adjusted HR = 5.70, 95% CI: 1.13-28.68) and female sex (adjusted HR = 6.59; 95% CI: 1.04-41.62). The median duration of follow-up was 89 (IQR: 32-158) weeks. The drug retention at the most recent follow-up was 35.1%. Predictors of golimumab discontinuation at the most recent follow-up were corticosteroid use at baseline (adjusted HR = 2.60, 95% CI: 1.17-5.79) and female sex (adjusted HR = 2.24; 95% CI: 1.19-4.23).CONCLUSION: Patients with CD treated with golimumab were a treatment-refractory group. Despite this, more than one-third of the patients appeared to have had clinical benefit after a median follow-up of more than 1.5 years.
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