Update of EULAR recommendations for the treatment of systemic sclerosis

The aim was to update the 2009 European League against Rheumatism (EULAR) recommendations for the treatment of systemic sclerosis (SSc), with attention to new therapeutic questions. Update of the previous treatment recommendations was performed according to EULAR standard operating procedures. The task force consisted of 32 SSc clinical experts from Europe and the USA, 2 patients nominated by the pan-European patient association for SSc (Federation of European Scleroderma Associations (FESCA)), a clinical epidemiologist and 2 research fellows. All centres from the EULAR Scleroderma Trials and Research group were invited to submit and select clinical questions concerning SSc treatment using a Delphi approach. Accordingly, 46 clinical questions addressing 26 different interventions were selected for systematic literature review. The new recommendations were based on the available evidence and developed in a consensus meeting with clinical experts and patients. The procedure resulted in 16 recommendations being developed (instead of 14 in 2009) that address treatment of several SSc-related organ complications: Raynaud's phenomenon (RP), digital ulcers (DUs), pulmonary arterial hypertension (PAH), skin and lung disease, scleroderma renal crisis and gastrointestinal involvement. Compared with the 2009 recommendations, the 2016 recommendations include phosphodiesterase type 5 (PDE-5) inhibitors for the treatment of SSc-related RP and DUs, riociguat, new aspects for endothelin receptor antagonists, prostacyclin analogues and PDE-5 inhibitors for SSc-related PAH. New recommendations regarding the use of fluoxetine for SSc-related RP and haematopoietic stem cell transplantation for selected patients with rapidly progressive SSc were also added. In addition, several comments regarding other treatments addressed in clinical questions and suggestions for the SSc research agenda were formulated. These updated data-derived and consensus-derived recommendations will help rheumatologists to manage patients with SSc in an evidence-based way. These recommendations also give directions for future clinical research in SSc

Phenotypes Determined by Cluster Analysis and Their Survival in the Prospective European Scleroderma Trials and Research Cohort of Patients With Systemic Sclerosis

Objective: Systemic sclerosis (SSc) is a heterogeneous connective tissue disease that is typically subdivided into limited cutaneous SSc (lcSSc) and diffuse cutaneous SSc (dcSSc) depending on the extent of skin involvement. This subclassification may not capture the entire variability of clinical phenotypes. The European Scleroderma Trials and Research (EUSTAR) database includes data on a prospective cohort of SSc patients from 122 European referral centers. This study was undertaken to perform a cluster analysis of EUSTAR data to distinguish and characterize homogeneous phenotypes without any a priori assumptions, and to examine survival among the clusters obtained. / Methods: A total of 11,318 patients were registered in the EUSTAR database, and 6,927 were included in the study. Twenty‐four clinical and serologic variables were used for clustering. / Results: Clustering analyses provided a first delineation of 2 clusters showing moderate stability. In an exploratory attempt, we further characterized 6 homogeneous groups that differed with regard to their clinical features, autoantibody profile, and mortality. Some groups resembled usual dcSSc or lcSSc prototypes, but others exhibited unique features, such as a majority of lcSSc patients with a high rate of visceral damage and antitopoisomerase antibodies. Prognosis varied among groups and the presence of organ damage markedly impacted survival regardless of cutaneous involvement. / Conclusion: Our findings suggest that restricting subsets of SSc patients to only those based on cutaneous involvement may not capture the complete heterogeneity of the disease. Organ damage and antibody profile should be taken into consideration when individuating homogeneous groups of patients with a distinct prognosis

Selkeäkielisen potilasohjeen kehittäminen varfariinihoitoa saavalle potilaalle

Tässä opinnäytetyössä on tarkoituksena selvittää selkeän kielen tarvetta eteisvärinäpotilaan kirjallisessa ohjauksessa sekä tuottaa juurruttamisen menetelmällä varfariinihoitoa saavan potilaan selkeäkielinen hoito-opas. Opinnäytetyö on tehty yhteistyössä perusturvakuntayhtymä Karviaisen terveyskeskuksien henkilökunnan kanssa. Opinnäytetyö on osa Laurea-ammattikorkeakoulun Pumppu-osahanketta. Pumppu-hanke on ylimaakunnallinen vuosina 2011–2014 toteutettava teemahanke, jota rahoittavat Päijät-Hämeen liitto ja Etelä-Suomen maakuntien EU-yksikkö. Laurea-ammattikorkeakoulun Pumppu-osahankkeessa etsitään keinoja asiakkaan terveyden ja hyvinvoinnin edistämiseen sekä hoitamiseen erilaisilla hyvinvointipoluilla. Aineiston tiedonkeruu tehtiin teemahaastattelulla sekä sähköisellä kyselylomakkeella. Vastaukset analysoitiin sisällönanalyysin avulla. Kehittämistoiminnan lopputuotoksena laadittiin selkeäkielinen Marevan®-hoidon miniopas. Marevan®-hoidon miniopas sisältää selkeäkielistä tietoa Marevan®-lääkityksestä, veren hyytymiskyvyn seurannan merkityksestä, lääkkeen annostelusta sekä ruokavalion, alkoholin että muiden lääkkeiden ja luontaistuotteiden vaikutuksista Marevan®-lääkityksessä. Oppaassa on myös kerrottu Marevan®-lääkityksen erityistilanteista, kuten lääkitykseen liittyvistä vaaratekijöistä. Marevan®-hoidon miniopas on otettu työyhteisössä käyttöön toukokuussa 2013. Työyhteisö kerää asiakkailta palautetta minioppaasta puolistrukturoidulla arviointilomakkeella. Palautteiden pohjalta he tulevat jatkossa arvioimaan oppaan käytön ja kehittämisen tarvetta.The development of a clear language patient guide for a patient with warfarin therapy In this thesis the purpose is to find out the need for a clear language written guidance for a patient with atrial fibrillation and produce a clear language patient´s Guide for a patient with warfarin therapy by using dissemination method. The thesis is made in cooperation with the staff of health centers in Karviainen Health District. The thesis is a part of Pumppu subproject in Laurea University for Applied Sciences. The Pumppu project is an interregional theme of the project which to be carried out in 2011- 2014, and is financed by Päijät-Häme Region Association and the EU unit of southern provinces of Finland. A subproject Pumppu in Laurea University for Applied Sciences is searching for ways to promote and care for a customer`s health and welfare by different welfare paths. The material for this thesis was gathered by using a theme interview and an electronic questionnaire. The answers were analyzed by using content analysis. As the final result of development, a clear language mini guide of Marevan® therapy was drawn up. A Marevan® therapy mini guide includes clear language information about Marevan® therapy, the importance of blood clotting ability monitoring, drug delivery and the effects of diet, alcohol, other medicines and natural remedies for medicine in Marevan® therapy. The guide tells also about the specific situations in Marevan® therapy, such as the risk factors of Marevan® therapy. Marevan® therapy mini guide has been introduced at workplace in May 2013. The workplace collects the feedback of the mini guide from the patients with a semi- structured form. On the basis of feedback they will estimate the need of use and development of the guide in the future