scholarly journals Ehlers-Danlos syndromes: state of the art on clinical practice guidelines

RMD Open ◽  
2018 ◽  
Vol 4 (Suppl 1) ◽  
pp. e000790 ◽  
Author(s):  
Alberto Sulli ◽  
Rosaria Talarico ◽  
Carlo Alberto Scirè ◽  
Tadej Avcin ◽  
Marco Castori ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Clinical Decision Making ◽  
Unmet Needs ◽  
Musculoskeletal Diseases ◽  
Clinical Decision ◽  
Current Evidence ◽  
Reference Network ◽  
Publication Type

ObjectiveTo report the effort of the European Reference Network for Rare and Complex CONnective tissue and musculoskeletal diseases NETwork working group on Ehlers-Danlos syndromes (EDS) and related disorders to assess current available clinical practice guidelines (CPGs) specifically addressed to EDS, in order to identify potential clinician and patient unmet needs.MethodsSystematic literature search in PUBMED and EMBASE based on controlled terms (MeSH and Emtree) and keywords of the disease and publication type (CPGs). All the published articles were revised in order to identify existing CPGs on diagnosis, monitoring and treatment of EDS.ResultsLiterature revision detected the absence of papers reporting good quality CPGs to optimise EDS patient care. The current evidence-based literature regarding clinical guidelines for the EDS was limited in size and quality, and there is insufficient research exploring the clinical features and interventions, and clinical decision-making are currently based on theoretical and limited research evidences.ConclusionsMany clinician and patient unmet needs have been identified.

scholarly journals Idiopathic inflammatory myopathies: state of the art on clinical practice guidelines

RMD Open ◽  
2019 ◽  
Vol 4 (Suppl 1) ◽  
pp. e000784 ◽  
Author(s):  
Alain Meyer ◽  
Carlo Alberto Scirè ◽  
Rosaria Talarico ◽  
Tobias Alexander ◽  
Zahir Amoura ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Unmet Needs ◽  
Musculoskeletal Diseases ◽  
Reference Network ◽  
Idiopathic Inflammatory Myopathies ◽  
Inflammatory Myopathies ◽  
European Reference Network ◽  
Multidisciplinary Working

Idiopathic inflammatory myopathies (IIMs) encompass a heterogeneous group of rare autoimmune diseases characterised by muscle weakness and inflammation, but in antisynthetase syndrome arthritis and interstitial lung disease are more frequent and often inaugurate the disease. Clinical practice guidelines (CPGs) have been proposed for IIMs, but they are sparse and heterogeneous. This work aimed at identifying: i) current available CPGs for IIMs, ii) patients ’ and clinicians’ unmet needs not covered by CPGs. It has been performed in the framework of the European Reference Network on rare and complex connective tissue and musculoskeletal diseases (ReCONNET), a network of centre of expertise and patients funded by the European Union’s Health Programme. Fourteen original CPGs were identified, notably recommending that: i) extra-muscular involvements should be assessed; ii) corticosteroids and methotrexate or azathioprine are first-line therapies of IIMs. ii) IVIG is a treatment of resistant-DM that may be also used in other resistant-IIMs; iii) physical therapy and sun protection (in DM patients) are part of the treatment; v) tumour screening for patients with DM include imaging of chest, abdomen, pelvis and breast (in woman) along with colonoscopy (in patients over 50 years); vi) disease activity and damages should be monitor using standardised and validated tools. Yet, only half of these CPGs were evidence-based. Crucial unmet needs were identified both by patients and clinicians. In particular, there was a lack of large multidisciplinary working group and of patients ’ preferences. The following fields were not or inappropriately targeted: diagnosis; management of extra-muscular involvements other than skin; co-morbidities and severe manifestations.

scholarly journals Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey

RMD Open ◽  
2020 ◽  
Vol 6 (2) ◽  
pp. e001344
Author(s):  
Rosaria Talarico ◽  
Diana Marinello ◽  
Stefano Bombardieri ◽  
Gerd Burmester ◽  
Joao Fonseca ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Connective Tissue ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Healthcare Professionals ◽  
Musculoskeletal Diseases ◽  
Family Members ◽  
Disease Patient ◽  
Connective Tissue Diseases ◽  
Reference Network

IntroductionThe European Reference Network (ERN) ReCONNET is the ERN aimed at improving the management of rare and complex connective tissue and musculoskeletal diseases (rCTDs) across the European Union (EU). In the mission of ERN ReCONNET, clinical practice guidelines (CPGs) play a crucial role, representing a valid tool towards the harmonisation of the management of rCTDs while improving effectiveness and quality of care delivered to patients.MethodsERN ReCONNET developed two surveys to map the adherence to rCTDs CPGs among healthcare providers and to assess the knowledge and awareness of CPGs for their diseases among patients, family members and caregivers.ResultsThe results of the surveys highlighted that healthcare professionals find it useful to apply CPGs in clinical practice (93%), while 62% of them experience difficulties and barriers in the application in their centres. Healthcare professionals also highlighted the need to develop CPGs for all rCTDs and to implement the use of the existing CPGs in clinical practice. On the other hand, patients, families and caregivers are relatively aware of the purpose of CPGs (51%) and 62% of them were aware of the existence of CPGs for their disease. Patient-friendly versions of CPGs and patients’ lifestyle guidelines should be systematically developed contributing to the empowerment of patients in the disease management.ConclusionERN ReCONNET is addressing the main issues identified in the results of the survey, promoting practical actions for the local adaptation of CPGs across Europe, improving their routine clinical use and increasing the awareness on CPGs among rCTDs patients, family members and caregivers.

scholarly journals A user guide to the American Society of Hematology clinical practice guidelines

2020 ◽  
Vol 4 (9) ◽  
pp. 2095-2110
Author(s):  
Ariel Izcovich ◽  
Adam Cuker ◽  
Robert Kunkle ◽  
Ignacio Neumann ◽  
Julie Panepinto ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Immune Thrombocytopenia ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Cell Disease ◽  
Presentation Formats ◽  
American Society ◽  
The Many

Abstract Since November 2018, Blood Advances has published American Society of Hematology (ASH) clinical practice guidelines on venous thromboembolism, immune thrombocytopenia, and sickle cell disease. More ASH guidelines on these and other topics are forthcoming. These guidelines have been developed using consistent processes, methods, terminology, and presentation formats. In this article, we describe how patients, clinicians, policymakers, researchers, and others may use ASH guidelines and the many related derivates by describing how to interpret information and how to apply it to clinical decision-making. Also, by exploring how these documents are developed, we aim to clarify their limitations and possible inappropriate usage.

Clinical Practice Guidelines: What Are They? Where Are They? How Good Are They?

2009 ◽  
Vol 28 (5) ◽  
pp. 343-350 ◽  
Author(s):  
Joan Renaud Smith ◽  
Ann Donze
Keyword(s):  
Clinical Practice ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Health Care Team ◽  
Decision Making Process ◽  
Evidence Based ◽  
Practice Setting ◽  
Team Members

PREVIOUS COLUMNS HAVE FOCUSED on utilizing evidence-based practice to incorporate the best evidence into clinical practice. This column builds upon that knowledge and describes a specific type of presynthesized evidence meant to guide and inform practice: clinical practice guidelines (CPGs). Clinical practice guidelines have been in existence for years, and their development is based on the desire to move research into practice and promote consistency among practitioners.1 Clinical practice guidelines are tools for health care team members to use to enhance their knowledge and skill in integrating evidence into the clinical decision making process. This column defines CPGs and the significance they have in the practice setting and provides tools and resources necessary to locate, develop, and critically appraise them.

scholarly journals A71 RECOMMENDATION REVERSALS IN GASTROENTEROLOGY CLINICAL PRACTICE GUIDELINES

2021 ◽  
Vol 4 (Supplement_1) ◽  
pp. 34-37
Author(s):  
R Gholami ◽  
N Gimpaya ◽  
R Khan ◽  
M A Scaffidi ◽  
R Bansal ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Clinical Decision Making ◽  
Epidemiologic Study ◽  
Clinical Decision ◽  
Primary Objective ◽  
Accepted Practice ◽  
Meta Analyses ◽  
Quality Evidence

Abstract Background Clinical practice guidelines are evidence-based resources designed to inform clinical decision making. Often, superior evidence will support the inclusion of novel procedures and practices to replace older recommendations. Recommendation reversals occur when (a) superior quality evidence emerges to suggest the harm or non-beneficence of prior recommendations, and (b) that recommendation is not supplanted by a newer one. Aims The primary objective of this study was to describe the content, frequency and rationale for recommendation reversals in CPGs published by gastroenterological societies. Methods For this meta-epidemiologic study, we considered two criteria to define a recommendation reversal: (a) the more recent CPG makes a recommendation that contradicts a previously accepted practice; and (b) the prior recommendation is not replaced by any novel intervention. We searched CPGs published by 20 major GI societies from 1991- 2019. Guidelines were included if had at least two iterations with the same title and used a valid evidence rating system (such as GRADE). Explicit recommendations which reported definite levels of evidence and strength of recommendation were extracted. Results We identified 1022 clinical guidelines from GI societies over 28 years. 292 CPGs were included for data synthesis. 5985 explicit statements were extracted. 12 reversals were confirmed and are summarized in the Table. Six reversals (50.0%) occurred due to studies reporting non-beneficence and 3 (25.0%) occrred due to studies reporting harm. Three recommendations (25.0%) were reversed due to new clinical trials; 3 (25.0%) due to systematic reviews or meta-analyses; and 2 to conform with CPGs of other societies (16.7%). Conclusions We describe recommendation reversals made in gastroenterology CPGs, and the reasons thereof. Investigation of recommendation reversals allows for the identification of low-value medical practices. This reinforces the need for GI CPG committees to (1) iteratively review guidelines to re-evaluate recommendations made on low-quality evidence and; (2) refrain from making recommendations when evidence for the same is weak. Funding Agencies None

scholarly journals Barriers and facilitators affecting implementation of the Canadian clinical practice guidelines for the diagnosis of acute aortic syndrome

2021 ◽  
Vol 2 (1) ◽  
Author(s):  
Caitlin Dmitriew ◽  
Robert Ohle
Keyword(s):  
Decision Making ◽  
Clinical Practice ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Decision Aid ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Barriers And Facilitators ◽  
Acute Aortic Syndrome ◽  
Potential Barriers

Abstract Background Acute aortic syndrome (AAS) is an uncommon, life-threatening emergency that is frequently misdiagnosed. The 2020 Canadian clinical practice guidelines for the diagnosis of AAS incorporate all available evidence into four key recommendations. In order to facilitate the implementation of these recommendations, a clinical decision aid was created. The objective of this study was to identify barriers and facilitators among physicians prior to implementation of the guideline recommendations in a multicentre step wedge cluster randomized control trial. Methods We conducted semi-structured interviews with nine emergency room physicians working at five sites distributed between urban academic and rural settings. We used purposive sampling, contacting physicians until data saturation was reached. Interview questions were designed to understand potential barriers and facilitators to guideline recommendation uptake and use. Responses were analysed according to the Theoretical Domains Framework, and overarching themes describing these barriers and facilitators were identified. Results Two themes and six subthemes encompassing 13 theoretical domains were identified. These included clinical decision-making support, awareness of the evidence, social factors, expected consequences, ability of physicians to acquire the necessary data and ease of use. A majority of interviewees anticipated that the guideline recommendations would support clinical decision making and more effectively risk-stratify patients. Other facilitators included endorsement of the guidelines by professional organizations and peers. Barriers to implementation include the fact that laboratory testing and knowledge of the rationale for its use in the investigation of AAS were not widespread. The complexity of the clinical decision aid and concerns about test specificity were also identified as potential barriers to use. Conclusion Physicians were amenable to using the AAS guideline recommendations to support clinical decision-making and to reduce resource use. A structured intervention should be developed to address the identified barriers and leverage the facilitators in order to ensure successful implementation. Our findings may have implications for the implementation of other guidelines used in emergency departments.

scholarly journals IgG4-related diseases: state of the art on clinical practice guidelines

RMD Open ◽  
2019 ◽  
Vol 4 (Suppl 1) ◽  
pp. e000787 ◽  
Author(s):  
Luca Iaccarino ◽  
Rosaria Talarico ◽  
Carlo Alberto Scirè ◽  
Zahir Amoura ◽  
Gerd Burmester ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Unmet Needs ◽  
Plasma Cells ◽  
Group Discussion ◽  
Reference Network ◽  
Evidence Based ◽  
Immunoglobulin G4 ◽  
Damage Indices

Immunoglobulin G4-related diseases (IgG4-RD) are a group of chronic relapsing–remitting inflammatory conditions, characterised by tissue infiltration with lymphocytes and IgG4-secreting plasma cells, fibrosis and a usually favourable response to steroids.In this narrative review, we summarise the results of a systematic literature research, which was performed as part of the European Reference Network ReCONNET, aimed at evaluating existing clinical practice guidelines (CPGs) and recommendations in IgG4-RD. From 167 publications initially obtained from a systematic literature search, only one was identified as a systematic multispecialist, evidence-based, consensus guidance statement on diagnosis and treatment of IgG4-RD, which may be recommended for use as CPG in IgG4-RD.With the recognition of a limited evidence based in this increasingly recognised disease, the group discussion has identified the following unmet needs: lack of shared classification criteria, absence of formal guidelines on diagnosis, no evidence-based therapeutic recommendations and lack of activity and damage indices. Areas of unmet needs include the difficulties in diagnosis, management and monitoring and the scarcity of expert centres.

AMERICAN ASSOCIATION OF CLINICAL ENDOCRINOLOGISTS/AMERICAN COLLEGE OF ENDOCRINOLOGY CLINICAL PRACTICE GUIDELINES FOR THE DIAGNOSIS AND TREATMENT OF POSTMENOPAUSAL OSTEOPOROSIS—2020 UPDATE EXECUTIVE SUMMARY

2020 ◽  
Author(s):  
Pauline M. Camacho ◽  
Steven M. Petak ◽  
Neil Binkley ◽  
Dima L. Diab ◽  
Leslie S. Eldeiry ◽  
...  
Keyword(s):  
Clinical Practice ◽  
High Risk ◽  
Postmenopausal Osteoporosis ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Clinical Decision Making ◽  
American Association ◽  
Clinical Decision ◽  
Evidence Base ◽  
Executive Summary

Objective: The development of these guidelines is sponsored by the American Association of Clinical Endocrinologists (AACE) Board of Directors and American College of Endocrinology (ACE) Board of Trustees and adheres with published AACE protocols for the standardized production of clinical practice guidelines (CPG). Methods: Recommendations are based on diligent reviews of the clinical evidence with transparent incorporation of subjective factors, according to established AACE/ACE guidelines for guidelines protocols. Results: The Executive Summary of this 2020 updated guideline contains 52 recommendations: 21 Grade A (40%), 24 Grade B (46%), 7 Grade C (14%), and no Grade D (0%). These detailed, evidence-based recommendations allow for nuance-based clinical decision-making that addresses multiple aspects of real-world care of patients. The evidence base presented in the subsequent Appendix provides relevant supporting information for the Executive Summary recommendations. This update contains 368 citations: 123 (33.5%) EL 1 (highest), 132 (36%) EL 2 (intermediate), 20 (5.5%) EL 3 (weak), and 93 (25%) EL 4 (lowest). New or updated topics in this CPG include: clarification of the diagnosis of osteoporosis, stratification of the patient according to high-risk and very high-risk features, a new dual action therapy option, and transitions from therapeutic options. Conclusion: This guideline is a practical tool for endocrinologists, physicians in general, regulatory bodies, health-related organizations, and interested laypersons regarding the diagnosis, evaluation, and treatment of postmenopausal osteoporosis.

scholarly journals Relapsing polychondritis: state of the art on clinical practice guidelines

RMD Open ◽  
2018 ◽  
Vol 4 (Suppl 1) ◽  
pp. e000788 ◽  
Author(s):  
Simona Rednic ◽  
Laura Damian ◽  
Rosaria Talarico ◽  
Carlo Alberto Scirè ◽  
Alexander Tobias ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Unmet Needs ◽  
Age Groups ◽  
Relapsing Polychondritis ◽  
Anaesthetic Management ◽  
Medical Subject Headings ◽  
Publication Type ◽  
Patient Reported

Due to the rarity of relapsing polychondritis (RP), many unmet needs remain in the management of RP. Here, we present a systematic review of clinical practice guidelines (CPGs) published for RP, as well as a list of the most striking unmet needs for this rare disease. We carried out a systematic search in PubMed and Embase based on controlled terms (medical subject headings and Emtree) and keywords of the disease and publication type (CPGs). The systematic literature review identified 20 citations, among which no CPGs could be identified. We identified 11 main areas with unmet needs in the field of RP: the diagnosis strategy for RP; the therapeutic management of RP; the management of pregnancy in RP; the management of the disease in specific age groups (for instance in paediatric-onset RP); the evaluation of adherence to treatment; the follow-up of patients with RP, including the frequency of screening for the potential complications and the optimal imaging tools for each involved region; perioperative and anaesthetic management (due to tracheal involvement); risk of neoplasms in RP, including haematological malignancies; the prevention and management of infections; tools for assessment of disease activity and damage; and patient-reported outcomes and quality of life indicators. Patients and physicians should work together within the frame of the ReCONNET network to derive valuable evidence for obtaining literature-informed CPGs.

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