scholarly journals European consensus-based recommendations for the diagnosis and treatment of Kawasaki disease – the SHARE initiative

Rheumatology ◽  
2018 ◽  
Vol 58 (4) ◽  
pp. 672-682 ◽  
Author(s):  
Nienke de Graeff ◽  
Noortje Groot ◽  
Seza Ozen ◽  
Despina Eleftheriou ◽  
Tadej Avcin ◽  
...  

AbstractObjectivesThe European Single Hub and Access point for paediatric Rheumatology in Europe initiative aimed to optimize care for children with rheumatic diseases. Kawasaki disease (KD) is the most common cause of acquired heart disease in children and an important cause of long-term cardiac disease into adulthood. Prompt diagnosis and treatment of KD is difficult due to the heterogeneity of the disease but is crucial for improving outcome. To date, there are no European internationally agreed, evidence-based guidelines concerning the diagnosis and treatment of KD in children. Accordingly, treatment regimens differ widely. The aim of this study is to provide consensus-based, European-wide evidence-informed recommendations for diagnosis and treatment of children with KD.MethodsRecommendations were developed using the EULAR’s standard operating procedures. An extensive systematic literature search was performed, and evidence-based recommendations were extrapolated from the included papers. These were evaluated by a panel of international experts via online surveys and subsequently discussed in three consensus meetings, using nominal group technique. Recommendations were accepted when ⩾80% agreed.ResultsIn total, 17 recommendations for diagnosis and 14 for treatment of KD in children were accepted. Diagnostic recommendations included laboratory and imaging workup for complete as well as incomplete KD. Treatment recommendations included the importance of early treatment in both complete and incomplete KD, use of intravenous immunoglobulin, aspirin, corticosteroids for high-risk cases, and other treatment options for those with resistant disease.ConclusionThe Single Hub and Access point for paediatric Rheumatology in Europe initiative provides international evidence-based recommendations for diagnosing and treating KD in children, facilitating improvement and uniformity of care.

Rheumatology ◽  
2018 ◽  
Vol 58 (4) ◽  
pp. 656-671 ◽  
Author(s):  
Nienke de Graeff ◽  
Noortje Groot ◽  
Paul Brogan ◽  
Seza Ozen ◽  
Tadej Avcin ◽  
...  

Abstract Objectives The European initiative Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) aimed to optimize care for children with rheumatic diseases. Systemic vasculitides are very rare in children. Consequently, despite recent advances, paediatric-specific information is sparse. The lack of evidence-based recommendations is an important, unmet need. This study aimed to provide recommendations for diagnosing and treating children with rare forms of childhood systemic vasculitis. Methods Recommendations were developed by a consensus process in accordance with the European League Against Rheumatism standard operating procedures. A systematic literature review informed the recommendations, which were devised and evaluated by a panel of experts via an online survey, and two consensus meetings using nominal group technique. Recommendations were accepted when ⩾ 80% of experts agreed. Results Ninety-three relevant articles were found, and 78 recommendations were accepted in the two consensus meetings. General, cross-cutting recommendations and disease-specific statements regarding the diagnosis and treatment of childhood-onset PAN, granulomatosis with polyangiitis, microscopic polyangiitis, eosinophilic granulomatosis with polyangiitis, and Takayasu arteritis are provided. Conclusion These Single Hub and Access point for paediatric Rheumatology in Europe recommendations were formulated through an evidence-based consensus process to support uniform, high-quality standard of care for children with rare forms of paediatric systemic vasculitis.


2020 ◽  
Vol 76 (4) ◽  
pp. 182-196
Author(s):  
Hana Malcová

Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in children and uveitis is its most important extra-articular manifestation. Evidence-based recommendations are available only to a limited extent and therefore JIA associated uveitis management is mostly based on physicians’ experience. Consequently, treatment practices differ widely, both nationally and internationally. Therefore, an effort to optimize and publish recommendations for the care of children and young adults with rheumatic diseases was launched in 2012 as part of the international project SHARE (Single Hub and Access Point for Pediatric Rheumatology in Europe) to facilitate clinical practice for paediatricians and (paediatric) rheumatologists. The aim of this work was to translate published international SHARE recommendations for the diagnosis and treatment of JIA associated uveitis and to adapt them for use in the Czech and Slovak Republics. International recommendations were developed according to the standard methodology of the European League against Rheumatism (EULAR) by a group of nine experienced paediatric rheumatologists and three experts in ophthalmology. It was based on a systematic literature review and evaluated in the form of an online survey and subsequently discussed using a nominal group technique. Recommendations were accepted if > 80% agreement was reached (including all three ophthalmologists). A total of 22 SHARE recommendations were accepted: 3 on diagnosis, 5 on disease activity assessment, 12 on treatment and 2 on future recommendations. Translation of the original text was updated and modified with data specific to the czech and slovak health care systems and supplemented with a proposal for a protocol of ophthalmological dispensarization of paediatric JIA patients and a treatment algorithm for JIA associated uveitis. Conclusion: The aim of the SHARE initiative is to improve and standardize care for paediatric patients with rheumatic diseases across Europe. Therefore, recommendations for the diagnosis and treatment of JIA-associated uveitis have been formulated based on the evidence and agreement of leading European experts in this field.


Author(s):  
Kathleen M Hoeger ◽  
Anuja Dokras ◽  
Terhi Piltonen

Abstract Polycystic ovary syndrome (PCOS) is one of the most common reproductive endocrine disorders in women and despite this, diagnostic challenges, delayed diagnosis, and less-than-optimal treatment regimens plague the condition. The International PCOS network, consisting of geographically diverse international experts in PCOS as well as consumers, engaged in a multi-year international evidence-based guideline development process that was jointly sponsored by the European Society for Human Reproduction and Embryology (ESHRE) and the American Society of Reproductive Medicine (ASRM). The guideline was published in 2018 and endorsed by more than 40 international societies involved in PCOS. Translation of this evidence-based guideline to medical practice and consumer groups remains a priority. However, there remain many challenges to both understanding the diagnosis and treatment of PCOS. Evidence suggests that both clinicians and consumers are not satisfied with the timeliness of diagnosis and treatment options. This review summarizes the important findings for diagnosis and treatment from the guidelines and expands on recent developments in the literature since its publication. Special attention to diagnosis at the ends of the reproductive spectrum are discussed and remaining areas of controversy are noted. Additionally, the review highlights some of the remaining challenges in the understanding and management of PCOS to help guide clinicians and investigators in this perplexing condition.


2017 ◽  
Vol 76 (12) ◽  
pp. 1965-1973 ◽  
Author(s):  
Noortje Groot ◽  
Nienke de Graeff ◽  
Stephen D Marks ◽  
Paul Brogan ◽  
Tadej Avcin ◽  
...  

Lupus nephritis (LN) occurs in 50%–60% of patients with childhood-onset systemic lupus erythematosus (cSLE), leading to significant morbidity. Timely recognition of renal involvement and appropriate treatment are essential to prevent renal damage. The Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) initiative aimed to generate diagnostic and management regimens for children and adolescents with rheumatic diseases including cSLE. Here, we provide evidence-based recommendations for diagnosis and treatment of childhood LN. Recommendations were developed using the European League Against Rheumatism standard operating procedures. A European-wide expert committee including paediatric nephrology representation formulated recommendations using a nominal group technique. Six recommendations regarding diagnosis and 20 recommendations covering treatment choices and goals were accepted, including each class of LN, described in the International Society of Nephrology/Renal Pathology Society 2003 classification system. Treatment goal should be complete renal response. Treatment of class I LN should mainly be guided by other symptoms. Class II LN should be treated initially with low-dose prednisone, only adding a disease-modifying antirheumatic drug after 3 months of persistent proteinuria or prednisone dependency. Induction treatment of class III/IV LN should be mycophenolate mofetil (MMF) or intravenous cyclophosphamide combined with corticosteroids; maintenance treatment should be MMF or azathioprine for at least 3 years. In pure class V LN, MMF with low-dose prednisone can be used as induction and MMF as maintenance treatment. The SHARE recommendations for diagnosis and treatment of LN have been generated to support uniform and high-quality care for all children with SLE.


2014 ◽  
Vol 12 (S1) ◽  
Author(s):  
Nienke de Graeff ◽  
Noortje Groot ◽  
Sylvia Kamphuis ◽  
Tadej Avcin ◽  
Brigitte Bader-Meunier ◽  
...  

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e18320-e18320 ◽  
Author(s):  
Andrew Briggs ◽  
Camilla Baba ◽  
Anna Kaltenboeck ◽  
Allison Nicole Lipitz Snyderman ◽  
Emma McIntosh ◽  
...  

e18320 Background: A number of frameworks for assessing the value of cancer treatments such as the National Comprehensive Cancer Network’s evidence blocks, Memorial Sloan Kettering Cancer Center’s Drug Abacus and ASCO’s value framework have been developed to help address the rising cost of cancer treatments. Yet the methodological basis for the inclusion of differing attributes, how to incorporate other contextual considerations and understand stakeholder trade-offs is unclear. This qualitative study aimed to identify contextual factors prioritized by stakeholders for inclusion in oncology value frameworks. Methods: A scoping review identified attributes currently included in value frameworks. Nominal group technique methods were then used in 3 focus groups representing cancer patients, oncology nurses, and physicians across a range of cancer specialties. Each group was tasked with ‘identifying important treatment features’ based on their own experience. Following discussions, participants ranked attributes in order of importance and group consensus identified the ‘top 6’ factors. Results: Twenty-one attributes were identified by the patient (n = 9), nurse (n = 10) and physician (n = 6) focus groups. All identified efficacy and safety/toxicity. Long-term adverse effects, alternative treatment options, quality of evidence and reputation of the treating oncologist/center were prioritized by patients. Nurse preferences centered on mode of administration, quality of life, communication and treatment innovation. Physicians focused on the burden and inconvenience of treatments to patients, functional outcomes, financial toxicity to patients, and societal costs. Conclusions: Although efficacy and safety/toxicity were prioritized in all groups, the prioritization of contextual factors across stakeholders highlights the need to further understand the relative value of possible ‘other’ attributes currently not reflected in frameworks thus, possibly failing to reflect the preferences of stakeholders.


2017 ◽  
Vol 50 (03) ◽  
pp. 87-95 ◽  
Author(s):  
Norbert Wodarz ◽  
Anne Krampe-Scheidler ◽  
Michael Christ ◽  
Heribert Fleischmann ◽  
Winfried Looser ◽  
...  

AbstractConsumption of methamphetamine (“crystal”) has spread dramatically over several European countries. The management of methamphetamine-induced acute disorders has become a growing challenge to the health system. Pharmacological treatment strategies for methamphetamine-induced intoxication syndromes, acute withdrawal symptoms, and methamphetamine-induced psychosis are particularly important.The development of interdisciplinary and evidence- and consensus-based (S3) German Guidelines was based on a systematic literature and guideline search on therapeutic interventions in methamphetamine-related disorders (April, June 2015). Consideration was given to 9 guidelines and 103 publications. Recommendations on pharmacological treatment strategies were drawn up using the nominal group technique.Overall, only limited evidence is available. Benzodiazepines are first-line medication for methamphetamine-induced intoxication syndromes, particularly when they present with acute agitation and aggressive behavior. There is no evidence-based medication for the treatment of methamphetamine-related withdrawal symptoms and cravings. When treating methamphetamine-induced psychosis, second-generation antipsychotics should be favored, given their more favorable side-effect profile. The indication for continuation of antipsychotic medication must be reviewed regularly. In most cases, the antipsychotic should be tapered off within 6 months.


2016 ◽  
Vol 76 (2) ◽  
pp. 329-340 ◽  
Author(s):  
Felicitas Bellutti Enders ◽  
Brigitte Bader-Meunier ◽  
Eileen Baildam ◽  
Tamas Constantin ◽  
Pavla Dolezalova ◽  
...  

BackgroundIn 2012, a European initiative called Single Hub and Access point for pediatric Rheumatology in Europe (SHARE) was launched to optimise and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases. Juvenile dermatomyositis (JDM) is a rare disease within the group of paediatric rheumatic diseases (PRDs) and can lead to significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physicians' experience. Consequently, treatment regimens differ throughout Europe.ObjectivesTo provide recommendations for diagnosis and treatment of JDM.MethodsRecommendations were developed by an evidence-informed consensus process using the European League Against Rheumatism standard operating procedures. A committee was constituted, consisting of 19 experienced paediatric rheumatologists and 2 experts in paediatric exercise physiology and physical therapy, mainly from Europe. Recommendations derived from a validated systematic literature review were evaluated by an online survey and subsequently discussed at two consensus meetings using nominal group technique. Recommendations were accepted if >80% agreement was reached.ResultsIn total, 7 overarching principles, 33 recommendations on diagnosis and 19 recommendations on therapy were accepted with >80% agreement among experts. Topics covered include assessment of skin, muscle and major organ involvement and suggested treatment pathways.ConclusionsThe SHARE initiative aims to identify best practices for treatment of patients suffering from PRD. Within this remit, recommendations for the diagnosis and treatment of JDM have been formulated by an evidence-informed consensus process to produce a standard of care for patients with JDM throughout Europe.


2008 ◽  
Vol 3 (4) ◽  
pp. 135-142 ◽  
Author(s):  
Michelle A. Sandrey ◽  
Sean M. Bulger

Objective: The growing importance of evidence based practice in athletic training is necessitating academics and clinicians to be able to make judgments about the quality or lack of the body of research evidence and peer-reviewed standards pertaining to clinical questions. To assist in the judgment process, consensus methods, namely brainstorming, nominal group technique and the Delphi method can be used. The purpose of this paper is to review the literature related to the Delphi Method and its potential implications for evidence-based practice and peer-reviewed standards in athletic training. Data Sources: We searched PubMed and MEDLINE (1978–2007), CINAHL (1993–2006), Dissertation Abstracts (1979–2006) and Google Scholar (1983–2007) using the terms “Delphi method,” “modified Delphi technique,” “consensus methods,” “Delphi technique,” and combined search terms of “Delphi method AND allied health, AND medicine AND dentistry, AND nursing. Data Synthesis: Textual support for the use of the Delphi Method in athletic training and a brief review of the literature pertaining to the: objectives; advantages; limitations commonly associated with the use of the Delphi Method; and research protocol. Conclusions/Recommendations: The Delphi Method in athletic training has been used to fulfill two objectives; the need for evidence based practice and the need to establish policies and procedures when none are in existence or it is difficult for one individual to make a decision. The Delphi Method and other consensus development methods should not be viewed as a scientific method for creating new knowledge, but rather as processes for making the best use of available information, be that scientific data or the collective wisdom of participants.


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