The impacts of an inflammatory bowel disease nurse specialist on the quality of care and costs in Finland

Introduction: A specialized inflammatory bowel disease (IBD) nurse is considered a valuable and cost-effective member of a multidisciplinary team, not all clinics responsible for IBD care employ such nurses. We evaluated IBD nurse resources, quality of care and cost effects on IBD patients care in a nationwide study in Finland. Methods: A healthcare professional electronic survey was conducted in order to assess the impact of an IBD nurse on the quality of care. To study the cost effects, we obtained nationwide comprehensive data covering years between 2008 and 2016 from major administrative healthcare districts of Finland. Patients with a diagnosis of IBD (ICD-code K50 or K51) were identified from the data and their personal contacts and hospitalization were analyzed. The results were compared between healthcare districts with an IBD nurse and healthcare districts without an IBD nurse. Results: Forty-nine physicians and 88 nurses responded to the survey. Of the physicians, 92% reported that an established IBD nurse had released physician's resources. The most important IBD nurse contributions listed were patient support and follow-up (79-81% of the respondents). Healthcare district, which had an established IBD nurse, produced more patient contacts. A larger proportion of the contacts was managed by the IBD nurse. Clinics with an IBD nurse reported less patient hospitalization (4-9% vs 11-19%, p <.001). Estimated annual cost savings while employing an IBD nurse may be significant. Conclusion: The introduction of an IBD nurse led to better quality of care and potentially significant cost savings by reducing hospitalization rates and reallocating physician's time resources.Peer reviewe

Long-term outcome of inflammatory bowel disease patients with deep remission after discontinuation of TNF-blocking agents

Background: Little data exist on the long-term prognosis of patients with inflammatory bowel disease (IBD) after stopping TNF alpha-blocking therapy in deep remission. Existing data indicate that approximately 50% of patients on combination therapy who discontinued TNF alpha-blockers are still in remission 24 months later. The aims of this follow-up analysis were to evaluate the long-term remission rate after cessation of TNF alpha-blocking therapy, the predicting factors of a relapse and the response to restarting TNF alpha-blockers. Methods: The first follow-up data of 51 IBD patients (17 Crohn's disease [CD], 30 ulcerative colitis [UC] and four inflammatory bowel disease type unclassified [IBDU]) in deep remission at the time of cessation of TNF alpha-blocking therapy have been published earlier. The long-term data was collected retrospectively after the first follow-up year to evaluate the remission rate and risk factors for the relapse after a median of 36 months. Results: After the first relapse-free year, 14 out of the remaining 34 IBD patients relapsed (41%; 5/12 [42%] CD and 9/22 [41%] UC/IBDU). Univariate analysis indicated no associations with any predictive factors. Re-treatment was effective in 90% (26/29) of patients. Conclusion: Of IBD patients in deep remission at the time of cessation of TNF alpha-blocking therapy, up to 60% experience a clinical or endoscopic relapse after a median follow-up time of 36 months (95% CI 31-41 months). No individual risk factors predicting relapse could be identified. However, the initial response to a restart of TNF alpha-blockers seems to be effective and well tolerated.Peer reviewe

Combining biological therapies in patients with inflammatory bowel disease : a Finnish multi-centre study

Background and aims Therapy with two concomitant biologicals targeting different inflammatory pathways has emerged as a new therapy option for treatment refractory inflammatory bowel disease (IBD). Data on the efficacy and safety of dual biological therapy (DBT) are scarce and are investigated in this study. Materials and methods Data on all patients treated with a combination of two biologicals in four Finnish tertiary centres were collected and analysed. Remission was assessed by a physician on the basis of biomarkers, endoscopic evaluation and alleviation of symptoms. Results A total of 16 patients with 22 trials of DBT were included. Fifteen patients had Crohn's disease. The most common combination of DBT was adalimumab (ADA) and ustekinumab (USTE; 36%) with median follow-up of nine months (range 2-31). Altogether seven (32%) patients were in remission at the end of follow-up and in two trials response to DBT was assessed to be partial with the relief of patient symptoms. In a total of four trials DBT reduced the need for corticosteroids. The majority of patients achieving a response to DBT were treated with the combination of ADA and USTE (56%). At the end of follow-up all nine (41%) patients responding to DBT continued treatment. Infection complications occurred in three patients (19%). Conclusion DBT is a promising alternative treatment for refractory IBD, and half of our patients benefitted from it. More data on the efficacy and safety of DBT are needed especially in long-term follow up.Peer reviewe

Long-term outcomes of patients with acute severe ulcerative colitis treated with cyclosporine rescue therapy

BACKGROUND AND AIMS: The early outcomes of ulcerative colitis (UC) after rescue therapy with cyclosporine A (CyA) are well known. Published data on the safety of this treatment in perioperative use and data on the long-term prognosis are scarce and are investigated here. METHODS: All UC patients treated with CyA in Tampere University Hospital between 2009 and 2018 were reviewed from patient records. RESULTS: A total of 182 patients were included with the median follow-up of 3.8 (range 0-13) years. Of all patients, 139 (76%) responded to CyA. A quarter of the responders achieved long-term remission and used thiopurines as maintenance therapy at the end of follow-up. Altogether 83 (46%) needed further enhancement of treatment with corticosteroids (Cs) and 57 (31%) with biologicals or small molecules. Of the nonresponders 27 (55%) were treated surgically within admission to index flare. Infliximab was used as a third-line rescue therapy for 16 patients of whom four benefitted. The overall colectomy rate in this series was 45%. When compared to Cs alone CyA did not increase the risk for severe postoperative complications in patients treated for severe treatment-refractory UC. CONCLUSION: In conclusion, despite the good initial response to CyA, a large proportion of patients relapsed during long-term follow-up and the colectomy rates remain high. Other therapy attempts after failure of CyA merely postpone surgery in many. We therefore recommend informing patients about the possibility of surgery prior to the initiation of rescue therapy.publishedVersionPeer reviewe

Combining biological therapies in patients with inflammatory bowel disease: a Finnish multi-centre study

Background and aims: Therapy with two concomitant biologicals targeting different inflammatory pathways has emerged as a new therapy option for treatment refractory inflammatory bowel disease (IBD). Data on the efficacy and safety of dual biological therapy (DBT) are scarce and are investigated in this study.Materials and methods: Data on all patients treated with a combination of two biologicals in four Finnish tertiary centres were collected and analysed. Remission was assessed by a physician on the basis of biomarkers, endoscopic evaluation and alleviation of symptoms.Results: A total of 16 patients with 22 trials of DBT were included. Fifteen patients had Crohn's disease. The most common combination of DBT was adalimumab (ADA) and ustekinumab (USTE; 36%) with median follow-up of nine months (range 2-31). Altogether seven (32%) patients were in remission at the end of follow-up and in two trials response to DBT was assessed to be partial with the relief of patient symptoms. In a total of four trials DBT reduced the need for corticosteroids. The majority of patients achieving a response to DBT were treated with the combination of ADA and USTE (56%). At the end of follow-up all nine (41%) patients responding to DBT continued treatment. Infection complications occurred in three patients (19%).Conclusion: DBT is a promising alternative treatment for refractory IBD, and half of our patients benefitted from it. More data on the efficacy and safety of DBT are needed especially in long-term follow up.</p

Tulehdukselliset suolistosairaudet Suomessa : epidemiologia, maligniteetit ja kuolleisuus

Inflammatory bowel diseases (IBDs), Crohn´s disease (CD) and ulcerative colitis (UC) are characterized by chronic mucosal inflammation and subsequent lesions in the colon or even throughout the gastrointestinal tract with involvement of other organs. They are chronic inflammatory conditions with long-term morbidity and often requiring expensive healthcare. The aetiology of IBD has remained obscure and is thought to be multifactorial. Over the past few years IBD has become a global disease. Western European and North American countries have been traditionally high incidence and prevalence areas. During the last decade, increasing incidence rates has also been observed in Eastern Europe and Asia. It has been suggested that the incidence of IBD has stabilized or slightly increased in Western countries with even decreasing incidence rates for UC in some Western countries. However, new epidemiological data suggest that the incidence and prevalence of the diseases are still increasing in most countries, including Western countries. A North-South gradient has been identifiedfor IBD. In Europe, higher incidence rates have been found in Northern countries. In several countries including the USA, UK and France, North-South gradients have also been reported. Patients with long-lasting IBD, both UC and CD colitis, have been at increased risk of developing colorectal cancer (CRC) and CD patients are at increased risk of small intestine cancer. In most recent studies the risk of CRC has decreased and in some studies no increased risk of CRC has been seen in IBD overall. Male sex, young age at diagnosis, extensive colitis and primary sclerosing cholangitis (PSC) have been shown to increase the risk. Chronic colonic inflammation in UC or CD results in an increased risk of cell proliferation and colon carcinogenesis. Studies have supported the severity of microscopic inflammation as an independent risk factor for dysplasia and CRC in patients with long-standing UC. Patients with CD are at elevated risk of developing extra-intestinal cancers compared to UC patients, whose risk seems to be similar to that of general population. CD patients are at increased risk of developing cancer of the upper gastrointestinal tract, lung, urinary bladder and skin. Patients with UC have a significantly increased risk of liver-biliary cancer, but a decreased risk of lung cancer. Recent studies have shown an increased risk of non‐melanoma skin cancers (NMSCs) in IBD patients, especially in those taking thiopurines. An increased risk of lymphoma has also been observed among IBD patients taking thiopurines. IBD can cause increased mortality. The research on overall and cause-specific mortality in IBD is to some extent contradictory. Earlier studies have documented a slightly increased overall mortality for UC patients compared with general population but most studies have reported no increased mortality risk. In contrast to UC, overall mortality for patients with CD has been increased according to most studies. Among patients with UC mortality from CRCs, gastrointestinal, respiratory and nonalcoholic liver diseases has been increased. The increased mortality among CD patients has been attributed an excess of mortality in gastrointestinal, respiratory, genitourinary, infectious and nonalcoholic liver disease. This thesis aims to evaluate overall burden of IBD in Finland by estimating the nationwide incidence of IBD during the period 2000 2007 and the nationwide prevalence of IBD and changes in the prevalence from 1993 to 2008 by analysing the unique, comprehensive Finnish reimbursement database. Our aim was also to test the North-South gradient hypothesis. We moreover had an opportunity to study vitamin D levels in Finland in the Health 2000 Survey. Our aim was also to assess the long-term risks of malignant diseases and the overall and cause-specific mortality among patients with IBD in a nationwide study in Finland. Finally, our aim was to assess whether the degree of microscopic inflammation is a risk factor for developing dysplasia or CRC in IBD, and to specify the risk for developing dysplasia in patients with no inflammation to better target surveillance in IBD.Tausta: Tulehdukselliset suolistosairaudet, Crohnin tauti ja haavainen paksusuolitulehdus, ovat kroonisia, uusiutuvia tulehduksellisia sairauksia. Tulehduksellisten suolistosairauksien esiintyminen on kehittyneissä maissa huomattavasti tavallisempaa kuin kehittyvissä maissa ja näyttää edelleen lisääntyvän. Tulehduksellisiin suolistosairauksiin, etenkin haavaiseen paksusuolitulehdukseen, on liittynyt selvästi lisääntynyt paksuolisyöpäriski. Crohnin tauti potilaiden kuolleisuus on hiukan lisääntynyt. Potilaat ja menetelmät: Väitöskirjatyö koostui viidestä osatyötä (I-V). Kelan erityiskorvattavien lääkkeiden rekisteristä saatiin tiedot vuosina 2000-2007 myönnetyistä uusista lääkekorvauksista haavaiseen paksusuolitulehdukseen ja Crohnin tautiin sekä vuosina 1993 ja 2008 tiedot voimassa olevista lääkekorvauksista tulehduksellisiin suolistosairauksiin. Tulehduksellisten suolistosairauksien ilmaantuvuus sekä ilmaantuvuuden muutokset selvitettiin 2000 2007 sekä esiintyvyys ja esiintyvyyden muutokset 1993 sekä 2008. Vuosina 1987-1993 sekä 2000-2007 Crohnin tautiin sekä haavaiseen paksusuolitulehdukseen erityislääkekorvauksen saaneiden kuolleisuus ja kuolinsyyt sekä todetut syövät selvitettiin Tilastokeskuksesta ja Syöpärekisteristä. Lisäksi tapaus-verrokkitutkimuksessa selvitettiin takautuvasti vuosina 1996 2008 HUS:ssa tulehduksellisia suolistosairauksia sairastavilla todetut paksusuolisyövät ja dysplasiat sekä selvitettiin syöpäriskiä lisääviä ja siltä suojaavia tekijöitä. Tulokset: Haavainen paksusuolitulehdus lisääntyi 25 %:lla vuosina 2000-2007 ja oli yleisempi miehillä kuin naisilla, ja sen ilmaantuvuus oli lähes kolme kertaa suurempi kuin Crohnin taudin. Tulehdukselisten suolistosairauksien esiintyvyys kolminkertaistui vuosien 1993-2008 välillä. Vuonna 2008 Suomessa 0,6 %:lla väestöstä oli tulehduksellinen suolitosairaus. Paksusuolisyöpäriski oli lisääntynyt haavaista paksusuolitulehdusta sairastavilla. Vaikea mikroskooppinen tulehdus ja pitkäkestoinen tauti lisäsivät syöpäriskiä, sen sijaan tiopuriinien käyttö vähensi sitä. Ihon tyvisolusyöpäriski oli hiukan lisääntynyt sekä haavaista paksusuolitulehdusta että Crohnin tautia sairastavilla. Tulehduksellisiin suolistosairauksiin liittyi noin 14% lisääntynyt kuolleisuus. Tämä johtui lisääntyneestä kuolleisuudesta ruuansulatuskanavan sairauksiin, sappitie- ja paksusuolisyöpään sekä sydän- ja verisuonisairauksiin. Päätelmät: Tulehdukselliset suolistosairaudet ovat lisääntyneet Suomessa merkittävästi viimeisen parinkymmenen vuoden aikana, ja niiden esiintyvyys ja ilmaantuvuus ovat korkeimpia maailmassa. Voimakkaimmin on lisääntynyt haavaisen paksusuolitulehduksen esiintyvyys. Hoidon tavoitteena tulehduksellisia suolistosairauksia sairastavilla tulee olla suolen limakalvon tulehduksen tehokas hoito. Näin voidaan todennäköisesti vähentää riskiä sairastua paksusuolisyöpään samoin kuin kuolleisuutta sekä ruuansulatuskanavan sairauksiin että sydän- ja verisuonisairauksiin

High and increasing prevalence of inflammatory bowel disease in Finland with a clear North-South difference

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