Best Practice Guidelines in Managing the Craniofacial Aspects of Skeletal Dysplasia

Abstract Background Recognition and appropriate management of the craniofacial manifestations of patients with skeletal dysplasia are challenging, due to the rarity of these conditions, and dearth of literature to support evidence-based clinical decision making. Methods Using the Delphi method, an international, multi-disciplinary group of individuals, with significant experience in the care of patients with skeletal dysplasia, convened to develop multi-disciplinary, best practice guidelines in the management of craniofacial aspects of these patients. Results After a comprehensive literature review, 23 initial statements were generated and critically discussed, with subsequent development of a list of 22 best practice guidelines after a second round voting. Conclusions The guidelines are presented and discussed to provide context and assistance for clinicians in their decision making in this important and challenging component of care for patients with skeletal dysplasia, in order standardize care and improve outcomes.

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Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia

10.21203/rs.3.rs-61766/v2 ◽

2021 ◽

Author(s):

Ravi Savarirayan ◽

David E. Tunkel ◽

Laura M. Sterni ◽

Michael B. Bober ◽

Tae-Joon Cho ◽

...

Keyword(s):

Decision Making ◽

Practice Guidelines ◽

Delphi Method ◽

Skeletal Dysplasia ◽

Best Practice ◽

Clinical Decision Making ◽

Subsequent Development ◽

Clinical Decision ◽

Best Practice Guidelines ◽

Disciplinary Group

Abstract Background: Recognition and appropriate management of the craniofacial manifestations of patients with skeletal dysplasia are challenging, due to the rarity of these conditions, and dearth of literature to support evidence-based clinical decision making.Methods: Using the Delphi method, an international, multi-disciplinary group of individuals, with significant experience in the care of patients with skeletal dysplasia, convened to develop multi-disciplinary, best practice guidelines in the management of craniofacial aspects of these patients.Results: After a comprehensive literature review, 23 initial statements were generated and critically discussed, with subsequent development of a list of 22 best practice guidelines after a second round voting.Conclusions: The guidelines are presented and discussed to provide context and assistance for clinicians in their decision making in this important and challenging component of care for patients with skeletal dysplasia, in order standardize care and improve outcomes.

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Best practice guidelines for management of spinal disorders in skeletal dysplasia

10.21203/rs.2.23876/v1 ◽

2020 ◽

Author(s):

Klane White ◽

Michael B Bober ◽

Tae-Joon Cho ◽

Michael J Goldberg ◽

Julie Hoover-Fong ◽

...

Keyword(s):

Decision Making ◽

Practice Guidelines ◽

Skeletal Dysplasia ◽

Best Practice ◽

Clinical Decision Making ◽

Case Series ◽

Clinical Decision ◽

Spinal Disorders ◽

Best Practice Guidelines ◽

Group A

Abstract Background: Disorders of the spine present a common and difficult management concern in patients with skeletal dysplasia. Due to the rarity of these conditions however, the literature, largely consisting of small, single institution case series, is sparse in regard to well-designed studies to support clinical decision making in these situations. Methods: Using the Delphi method, an international, multi-disciplinary group of individuals, with significant experience in the care of patients with skeletal dysplasia, convened to develop multi-disciplinary, “best practice” guidelines in the care of spinal disorders in patients with skeletal dysplasia. Results: Starting with 33 statements, the group a developed a list of 31 “best practice” guidelines. Conclusions: The guidelines are presented and discussed to provide context for clinicians in their decision making in this often-challenging realm of care.

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Best practice guidelines for management of spinal disorders in skeletal dysplasia

10.21203/rs.2.23876/v2 ◽

2020 ◽

Author(s):

Klane White ◽

Michael B Bober ◽

Tae-Joon Cho ◽

Michael J Goldberg ◽

Julie Hoover-Fong ◽

...

Keyword(s):

Decision Making ◽

Practice Guidelines ◽

Skeletal Dysplasia ◽

Best Practice ◽

Clinical Decision Making ◽

Case Series ◽

Clinical Decision ◽

Spinal Disorders ◽

Best Practice Guidelines ◽

Group A

Abstract Background: Disorders of the spine present a common and difficult management concern in patients with skeletal dysplasia. Due to the rarity of these conditions however, the literature, largely consisting of small, single institution case series, is sparse in regard to well-designed studies to support clinical decision making in these situations. Methods: Using the Delphi method, an international, multi-disciplinary group of individuals, with significant experience in the care of patients with skeletal dysplasia, convened to develop multi-disciplinary, “best practice” guidelines in the care of spinal disorders in patients with skeletal dysplasia. Results: Starting with 33 statements, the group a developed a list of 31 “best practice” guidelines. Conclusions: The guidelines are presented and discussed to provide context for clinicians in their decision making in this often-challenging realm of care.

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No incentives, no innovation

Bulletin of The Royal College of Surgeons of England ◽

10.1308/147363509x379049 ◽

2009 ◽

Vol 91 (1) ◽

pp. 10-12

Author(s):

Jon Hackett

Keyword(s):

Decision Making ◽

Best Practice ◽

Clinical Decision Making ◽

Clinical Decision ◽

Bottom Up ◽

High Profile ◽

No Innovation

While the NHS has expressed a commitment to innovation with a succession of dedicated 'arms length bodies,' there are numerous high-profile cases in which advances on the ground have not received as much support as they might. In his recent Next Stage Review report, Lord Darzi has emphasised a commitment to clinical decision-making at all levels of the NHS but whether this will involve embracing best practice from the bottom up remains to be seen. For this article I spoke to two surgeons, whose sometimes controversial innovations were admired by many, about the obstacles they faced.

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P114: Barriers and facilitators affecting implementation of a decision aid for the diagnosis of acute aortic syndrome: a qualitative study

CJEM ◽

10.1017/cem.2020.320 ◽

2020 ◽

Vol 22 (S1) ◽

pp. S106-S106

Author(s):

C. Dmitriew ◽

R. Ohle

Keyword(s):

Decision Making ◽

Clinical Practice ◽

Practice Guidelines ◽

Resource Use ◽

Decision Aid ◽

Clinical Decision Making ◽

Clinical Decision ◽

Barriers And Facilitators ◽

Acute Aortic Syndrome ◽

D Dimer

Introduction: Acute aortic syndrome (AAS) is an uncommon, life-threatening emergency that is frequently misdiagnosed. The Canadian clinical practice guidelines for the diagnosis of AAS were developed in order to reduce the frequency of misdiagnoses and number of diagnostic tests. As part of the guidelines, a clinical decision aid was developed in order to facilitate clinician decision-making based on practice recommendations. The objective of this study was to identify barriers and facilitators among physicians to implementation of the decision aid. Methods: We conducted semi-structured interviews with emergency room physicians working at 5 sites distributed between urban academic and rural settings. We used purposive sampling, contacting ED physicians until data saturation was reached. Interview questions were designed to understand potential barriers and facilitators affecting the probability of decision aid uptake and accurate application of the tool. Two independent raters coded interview transcripts using an integrative approach to theme identification, combining an inductive approach to identification of themes within an organizing framework (Theoretical Domains Framework), discrepancies in coding were resolved through discussion until consensus was reached. Results: A majority of interviewees anticipated that the decision aid would support clinical decision making and risk stratification while reducing resource use and missed diagnoses. Facilitators identified included validation and publication of the guidelines as well as adoption by peers. Barriers to implementation and application of the tool included the fact that the use of D-dimer and knowledge of the rationale for its use in the investigation of AAS were not widespread. Furthermore, scoring components were, at times, out of alignment with clinician practices and understanding of risk factors. The complexity of the decision aid was also identified as a potential barrier to accurate use. Conclusion: Physicians were amenable to using the AAS decision aid to support clinical decision-making and to reduce resource use, particularly within rural contexts. Key barriers identified included the complexity of scoring and inclusion criteria, and the variable acceptance of D-dimer among clinicians. These barriers should be addressed prior to implementation of the decision aid during validation studies of the clinical practice guidelines.

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Novel Neurotechnological Interventions for Pediatric Drug-Resistant Epilepsy: Physician Perspectives

Journal of Child Neurology ◽

10.1177/0883073820966935 ◽

2020 ◽

pp. 088307382096693

Author(s):

Patrick J. McDonald ◽

Viorica Hrincu ◽

Mary B. Connolly ◽

Mark J. Harrison ◽

George M. Ibrahim ◽

...

Keyword(s):

Decision Making ◽

Best Practice ◽

Clinical Decision Making ◽

Qualitative Content Analysis ◽

Scientific Evidence ◽

Clinical Decision ◽

Drug Resistant ◽

Ethical Considerations ◽

Pediatric Drug ◽

Drug Resistant Epilepsy

This qualitative study investigated factors that guide physicians’ choices for minimally invasive and neuromodulatory interventions as alternatives to conventional surgery or medical management for pediatric drug-resistant epilepsy. North American physicians were recruited to one of 4 focus groups at national conferences. Discussions were analyzed using qualitative content analysis. A pragmatic neuroethics framework was applied to interpret results. Discussions revealed 2 major thematic branches: (1) clinical decision making and (2) ethical considerations. Under clinical decision making, physicians emphasized scientific evidence and patient candidacy when assessing neurotechnologies for patients. Ongoing seizures without intervention was important for safety and neurodevelopment. Under ethical considerations, resource allocation, among other financial considerations for technology adoption, were considerable sources of pressure on decision making. Access to neurotechnology was a salient theme differentiating Canadian and American contexts. When assessing novel neurotechnological interventions for pediatric drug-resistant epilepsy, physicians balance clinical and ethical factors to guide decision making and best practice.

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Characteristics of knowledge content in a curated online evidence library

Journal of the American Medical Informatics Association ◽

10.1093/jamia/ocx092 ◽

2017 ◽

Vol 25 (5) ◽

pp. 507-514 ◽

Cited By ~ 3

Author(s):

Sowmya Varada ◽

Ronilda Lacson ◽

Ali S Raja ◽

Ivan K Ip ◽

Louise Schneider ◽

...

Keyword(s):

Practice Guidelines ◽

Best Practice ◽

Decision Rules ◽

Clinical Decision ◽

Professional Society ◽

Clinical Decision Rules ◽

Quality Of Evidence ◽

Best Practice Guidelines ◽

Grade 5

Abstract Objective To describe types of recommendations represented in a curated online evidence library, report on the quality of evidence-based recommendations pertaining to diagnostic imaging exams, and assess underlying knowledge representation. Materials and Methods The evidence library is populated with clinical decision rules, professional society guidelines, and locally developed best practice guidelines. Individual recommendations were graded based on a standard methodology and compared using chi-square test. Strength of evidence ranged from grade 1 (systematic review) through grade 5 (recommendations based on expert opinion). Finally, variations in the underlying representation of these recommendations were identified. Results The library contains 546 individual imaging-related recommendations. Only 15% (16/106) of recommendations from clinical decision rules were grade 5 vs 83% (526/636) from professional society practice guidelines and local best practice guidelines that cited grade 5 studies (P < .0001). Minor head trauma, pulmonary embolism, and appendicitis were topic areas supported by the highest quality of evidence. Three main variations in underlying representations of recommendations were “single-decision,” “branching,” and “score-based.” Discussion Most recommendations were grade 5, largely because studies to test and validate many recommendations were absent. Recommendation types vary in amount and complexity and, accordingly, the structure and syntax of statements they generate. However, they can be represented in single-decision, branching, and score-based representations. Conclusion In a curated evidence library with graded imaging-based recommendations, evidence quality varied widely, with decision rules providing the highest-quality recommendations. The library may be helpful in highlighting evidence gaps, comparing recommendations from varied sources on similar clinical topics, and prioritizing imaging recommendations to inform clinical decision support implementation.

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