15,321 research outputs found

    Blueprint for a european calciphylaxis registry initiative. the european calciphylaxis network (eucalnet)

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    Calcific uraemic arteriolopathy (CUA) is a rare disease and continues to be a clinical challenge. The typical course of CUA is characterized by painful skin discolouration and induration evolving to necrotic ulcerations. Medial calcification of cutaneous arterioles and extensive extracellular matrix remodelling are the hallmarks of CUA. The epidemiology and risk factors associated with this disease are still not fully understood. Moreover, CUA treatment strategies vary significantly among centres and expert recommendations are heterogeneous. Registries may provide important insights and information to increase our knowledge about epidemiology and clinical aspects of CUA and may help to optimize its therapeutic management. In 2006, we established an internet-based registry in Germany (www.calciphylaxie.de) to allow online notification of patients with established or suspected CUA. The registry includes a comprehensive database with questions covering >70 parameters and items regarding patient-related and laboratory data, clinical background and presentation as well as therapeutic strategies. The next phase will be to allow international patient registration via www.calciphylaxis.net as part of the multinational EuCalNet (European Calciphylaxis Network) initiative, which is supported by the ERA-EDTA scientific working group 'CKD-MBD'. Based on the valuable experience with the previous German CUA registry, EuCalNet will be a useful tool to collect data on the rare disease CUA and may become a basis for prospective controlled trials in the near future

    Current clinician perspective on non-vitamin K antagonist oral anticoagulant use in challenging clinical cases.

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    OBJECTIVE: The evolution of non-vitamin K antagonist anticoagulants (NOACs) has changed the horizon of stroke prevention in atrial fibrillation (SPAF). All 4 NOACs have been tested against dose-adjusted warfarin in well-designed, pivotal, phase III, randomized, controlled trials (RCTs) and were approved by regulatory authorities for an SPAF indication. However, as traditional RCTs, these trials have important weaknesses, largely related to their complex structure and patient participation, which was limited by strict inclusion and extensive exclusion criteria. In the real world, however, clinicians are often faced with complex, multimorbid patients who are underrepresented in these RCTs. This article is based on a meeting report authored by 12 scientists studying atrial fibrillation (AF) in diverse ways who discussed the management of challenging AF cases that are underrepresented in pivotal NOAC trials. METHODS: An advisory board panel was convened to confer on management strategies for challenging AF cases. The article is derived from a summary of case presentations and the collaborative discussions at the meeting. CONCLUSION: This expert consensus of cardiologists aimed to define management strategies for challenging cases with patients who underrepresented in pivotal trials using case examples from their routine practice. Although strong evidence is lacking, exploratory subgroup analysis of phase III pivotal trials partially informs the management of these patients. Clinical trials with higher external validity are needed to clarify areas of uncertainty. The lack of clear evidence about complex AF cases has pushed clinicians to manage patients based on clinical experience, including rare situations of off-label prescriptions

    Extracorporeal membrane oxygenation with multiple-organ failure: Can molecular adsorbent recirculating system therapy improve survival?

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    BACKGROUND: Liver dialysis, molecular adsorbent recirculating system (MARS) particularly, has been used in liver failure to bridge to transplantation. We expanded the indication for MARS to patients with acute shock liver failure and cardiopulmonary failure on extracorporeal membrane oxygenation (ECMO), aiming to improve survival to wean from ECMO. METHODS: Retrospective chart analysis of patients on ECMO between 2010 and 2015 found 28 patients who met the criteria for acute liver failure, diagnosed by hyperbilirubinemia (total bilirubin ≥10 mg/dl) or by elevated transaminase (alanine transaminase \u3e1,000 IU/liter). Of these patients, 14 underwent MARS treatment (Group M), and 14 were supported with optimal medical treatment without MARS (Group C). Patient characteristics, liver function, and survival were compared between groups. RESULTS: Demographics, clinical risk factors, and pre-ECMO laboratory data were identical between the groups. MARS was used continuously for 8 days ± 9 in Group M. Total bilirubin, alanine transaminase, and international normalized ratio were improved significantly in Group M. There were no MARS-related complications. Survival to wean from ECMO for Group M was 64% (9/14) vs 21% (3/14) for Group C (p = 0.02). Mortality related to worsening liver dysfunction during ECMO was 40% (2/5 deaths) in Group M and 100% (11/11 deaths) in Group C (p = 0.004). The 30-day survival after ECMO was 43% (6/14) in Group M and 14% (2/14) in Group C (p = 0.09). CONCLUSIONS: MARS therapy in patients on ECMO safely accelerated recovery of liver function and improved survival to wean from ECMO, without increasing complications

    Acute kidney disease and renal recovery : consensus report of the Acute Disease Quality Initiative (ADQI) 16 Workgroup

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    Consensus definitions have been reached for both acute kidney injury (AKI) and chronic kidney disease (CKD) and these definitions are now routinely used in research and clinical practice. The KDIGO guideline defines AKI as an abrupt decrease in kidney function occurring over 7 days or less, whereas CKD is defined by the persistence of kidney disease for a period of > 90 days. AKI and CKD are increasingly recognized as related entities and in some instances probably represent a continuum of the disease process. For patients in whom pathophysiologic processes are ongoing, the term acute kidney disease (AKD) has been proposed to define the course of disease after AKI; however, definitions of AKD and strategies for the management of patients with AKD are not currently available. In this consensus statement, the Acute Disease Quality Initiative (ADQI) proposes definitions, staging criteria for AKD, and strategies for the management of affected patients. We also make recommendations for areas of future research, which aim to improve understanding of the underlying processes and improve outcomes for patients with AKD

    Patients' experiences of transitioning between different renal replacement therapy modalities : a qualitative study

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    BACKGROUND: Different kidney replacement therapy modalities are available to manage end-stage kidney disease, such as home-based dialysis, in-center hemodialysis, and kidney transplantation. Although transitioning between modalities is common, data on how patients experience these transitions are scarce. This study explores patients' perspectives of transitioning from a home-based to an in-center modality. METHODS: Patients transitioning from peritoneal dialysis to in-center hemodialysis were purposively selected. Semi-structured interviews were performed, digitally recorded, and transcribed verbatim. Data analysis, consistent with Charmaz' constructivist approach of grounded theory was performed. RESULTS: Fifteen patients (10 males; mean age 62 years) participated. The conditions of the transitioning process impacted the participants' experiences, resulting in divergent experiences and associated emotions. Some participants experienced a loss of control due to the therapy-related changes. Some felt tied down and having lost independence, whereas others stated they regained control as they felt relieved from responsibility. This paradox of control was related to the patient having or not having (1) experienced a fit of hemodialysis with their personal lifestyle, (2) a frame of reference, (3) higher care requirements, (4) insight into the underlying reasons for transitioning, and (5) trust in the healthcare providers. CONCLUSIONS: Care teams need to offer opportunities to elicit patients' knowledge and fears, dispel myths, forge connections with other patients, and visit the dialysis unit before transition to alleviate anxiety. Interventions that facilitate a sense of control should be grounded in the meaning that the disorder has for the person and how it impacts their sense of self
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