scholarly journals Healthcare Transition from Pediatric- to Adult-Focused Care in X-Linked Hypophosphatemia: Review and Expert Consensus

Author(s):  
Kathryn Dahir ◽  
Ruban Dhaliwal ◽  
Jill Simmons ◽  
Erik A Imel ◽  
Gary S Gottesman ◽  
...  

Abstract Context X-linked hypophosphatemia (XLH) is an inherited skeletal disorder that can lead to lifelong deleterious musculoskeletal and functional consequences. Although often perceived as a childhood condition, both children and adults experience the negative impacts of XLH. Adolescents and young adults (AYA) benefit from effective healthcare transition preparation to support the transfer from pediatric- to adult-focused care. Whereas transition timelines, milestones, and educational tools exist for some chronic conditions, they do not meet the unique needs of patients with XLH. Evidence Acquisition To produce the first expert recommendations on healthcare transition preparation for AYA with XLH developed by clinical care investigators and transition experts, a formal literature search was conducted and discussed in an advisory board meeting in July 2020. A modified Delphi method was used to refine expert opinion and facilitate a consensus position. Evidence Synthesis We identified the need for psychosocial and access-related resources for disease education, genetic counselling, family planning, and AYA emancipation from caregiver-directed care. Additionally, we recognized that it is necessary to facilitate communication with patients through channels familiar and accessible to AYA and teach patients to advocate for their healthcare/access to specialists. Conclusions Clear healthcare transition preparation guidelines and treatment-related goals are defined. Individualized timelines and practical strategies for healthcare transition preparation are proposed to optimize health outcomes resulting from continuous clinical care throughout the patient lifecycle. We provide an expert consensus statement describing a tailored healthcare transition preparation program specifically for AYA with XLH to aid in effective transfer from pediatric- to adult-focused healthcare.

Critical Care ◽  
2020 ◽  
Vol 24 (1) ◽  
Author(s):  
Arif Hussain ◽  
Gabriele Via ◽  
Lawrence Melniker ◽  
Alberto Goffi ◽  
Guido Tavazzi ◽  
...  

AbstractCOVID-19 has caused great devastation in the past year. Multi-organ point-of-care ultrasound (PoCUS) including lung ultrasound (LUS) and focused cardiac ultrasound (FoCUS) as a clinical adjunct has played a significant role in triaging, diagnosis and medical management of COVID-19 patients. The expert panel from 27 countries and 6 continents with considerable experience of direct application of PoCUS on COVID-19 patients presents evidence-based consensus using GRADE methodology for the quality of evidence and an expedited, modified-Delphi process for the strength of expert consensus. The use of ultrasound is suggested in many clinical situations related to respiratory, cardiovascular and thromboembolic aspects of COVID-19, comparing well with other imaging modalities. The limitations due to insufficient data are highlighted as opportunities for future research.


Episteme ◽  
2021 ◽  
pp. 1-15
Author(s):  
Boyd Millar

Abstract Very often when the vast majority of experts agree on some scientific issue, laypeople nonetheless regularly consume articles, videos, lectures, etc., the principal claims of which are inconsistent with the expert consensus. Moreover, it is standardly assumed that it is entirely appropriate, and perhaps even obligatory, for laypeople to consume such anti-consensus material. I maintain that this standard assumption gets things backwards. Each of us is particularly vulnerable to false claims when we are not experts on some topic – such falsehoods have systematic negative impacts on our doxastic attitudes that we can neither prevent nor correct. So, when there is clear expert consensus on a given scientific issue, while it is permissible for experts to consume anti-consensus material, laypeople have an epistemic obligation to avoid such material. This argument has important consequences for philosophical discussions of our epistemic obligations to perform or omit belief-influencing actions. Such discussions typically abstract away from the important differences between experts and laypeople. Accordingly, we should reject this typical practice as problematic, and insist instead that laypeople and experts have fundamentally different epistemic obligations.


2021 ◽  
pp. 219256822110126
Author(s):  
Yong Hai ◽  
Jingwei Liu ◽  
Yuzeng Liu ◽  
Tie Liu ◽  
Xinuo Zhang ◽  
...  

Study Design: Modified Delphi study. Objective: The objective of this study was to establish expert consensus on the application of lateral lumbar interbody fusion (LLIF) by using the modified Delphi study. Methods: From June 2019 to March 2020, Members of the Chinese Study Group for Lateral Lumbar Spine Surgery were selected to collect expert feedback using the modified Delphi method where 65 spine surgeons from all over China agreed to participate. Four rounds were performed: 1 face-to-face meeting and 3 subsequent survey rounds. The consensus was achieved with ≥a 70.0% agreement for each question. The recommendation of grade A was defined as ≥90.0% of the agreement for each question. The recommendation of grade B was defined as 80.0-89.9% of the agreement for each question. The recommendation of grade C was defined as 70.0-79.9% of the agreement for each question. Results: A total of 65 experts formed a panelist group, and the number of questionnaires collected was 63, 59, and 62 in the 3 rounds. In total, 5 sections, 71 questions, and 382 items achieved consensus after the Delphi rounds including summary; preoperative evaluation; application at the lumbar spinal stenosis, lumbar disc herniation, lumbar spondylolisthesis, adult degenerative scoliosis, postoperative adjacent segmental degeneration, and revision surgery; complications; and postoperative follow-up evaluation of LLIF. Conclusion: The modified Delphi method was utilized to ascertain an expert consensus from the Chinese Study Group for Lateral Lumbar Spine Surgery to inform clinical decision-making in the application of LLIF. The salient grade A recommendations of the survey are enumerated.


Hematology ◽  
2013 ◽  
Vol 2013 (1) ◽  
pp. 286-291 ◽  
Author(s):  
Cheng Hock Toh ◽  
Yasir Alhamdi

Abstract Disseminated intravascular coagulation (DIC) is a devastating clinical condition that is characterized by the loss of normal hemostatic control in response to sustained and systemic cell injury. The inciting injury may be from infection, trauma, or malignancy, but the consequent pathophysiology is multifactorial involving intertwined feedback loops between the coagulant, immune, and inflammatory pathways. Central to this is thrombin generation, but the ubiquitous nature of its in vivo functional consequences can make it difficult to dissect away the separate but overlapping components to the clinical problem. Therefore, early recognition and resolution of the precipitating events leading to DIC remains the central tenet to clinical care. This article refreshes our conceptual understanding of DIC pathogenesis and draws in recent advances in the cycle of cell death caused by extracellular nuclear proteins. It also aims to delineate recognition of response pathways that can be predominantly procoagulant or profibrinolytic to enable a more personalized and evidence-based approach to be delivered to the patient with DIC.


Author(s):  
Chandani Patel Chavez ◽  
Kenneth Cusi ◽  
Sushma Kadiyala

Abstract Context The burden of cirrhosis from NAFLD is reaching epidemic proportions in the United States. This calls for greater awareness among endocrinologists, who often see but may miss the diagnosis in adults with obesity or type 2 diabetes mellitus (T2D) who are at the highest risk. At the same time, recent studies suggest that GLP-1RAs are beneficial versus steatohepatitis (NASH) in this population. This minireview aims to assist endocrinologists to recognize the condition and recent work on the role of GLP-1RAs in NAFLD/NASH. Evidence acquisition Evidence from observational studies, randomized controlled trials, and meta-analyses. Evidence Synthesis Endocrinologists should lead multidisciplinary teams to implement recent consensus statements on NAFLD that call for screening and treatment of clinically significant fibrosis to prevent cirrhosis, especially in the high-risk groups (i.e., people with obesity, prediabetes or T2D). With no FDA-approved agents, weight loss is central to their successful management, with pharmacological treatment options limited today to vitamin E (in people without T2D) and diabetes medications that reverse steatohepatitis, such as pioglitazone or GLP-1RA. Recently the benefit of GLP-1RAs in NAFLD, suggested from earlier trials, has been confirmed in adults with biopsy-proven NASH. In 2021, the FDA also approved semaglutide for obesity management. Conclusion A paradigm change is developing between the endocrinologist’s greater awareness about their critical role to curve the epidemic of NAFLD and new clinical care pathways that include a broader use of GLP-1RAs in the management of these complex patients.


Circulation ◽  
2021 ◽  
Vol 144 (Suppl_2) ◽  
Author(s):  
Florian F Schmitzberger ◽  
Nathan L Haas ◽  
Ryan A Coute ◽  
Jason Bartos ◽  
Amy E Hackmann ◽  
...  

Introduction: Extracorporeal cardiopulmonary resuscitation (ECPR) has emerged as a promising resuscitation strategy for select patients suffering out-of-hospital cardiac arrest (OHCA), though limited data exists regarding detailed best practices for the complex process of initiating ECPR following OHCA. Hypothesis: Expert consensus using a modified Delphi process can systematically identify detailed best practices for ECPR initiation following adult non-traumatic OHCA. Methods: We utilized a modified Delphi process consisting of two survey rounds and a virtual consensus meeting to systematically identify best practices for ECPR initiation following adult non-traumatic OHCA. A modified Delphi process builds content validity and is an accepted method to develop consensus by eliciting expert opinions through multiple rounds of questionnaires. Consensus was achieved when items reached a high level of agreement, defined as greater than 80% responses for a particular item rated a 4 or 5 on a 5-point Likert scale. Results: Snowball sampling generated a panel of 14 content experts, composed of physicians from four continents and four primary specialties. Seven existing institutional protocols for ECPR cannulation following OHCA were identified and merged into a single comprehensive list of 216 items. The panel ultimately reached consensus on 95 items: Prior to Patient Arrival (8 items), Inclusion Criteria (8), Exclusion Criteria (7), Patient Arrival (8), ECPR Cannulation (21), Go On Pump (17), and Post-Cannulation (26). Conclusion: We present a list of essential items for initiation of ECPR following adult non-traumatic OHCA, generated using a modified Delphi process from an international panel of content experts. These findings can benefit centers currently performing ECPR for OHCA in quality assurance and performance improvement, and can serve as a template for new ECPR programs to follow.


2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 218-218
Author(s):  
Carrie Tompkins Stricker ◽  
Beth Faiman ◽  
Diana Harris ◽  
Nicole Rozario

218 Background: Rapidly emerging therapeutics for multiple myeloma (MM) have diverse and sometimes life-threatening toxicities, underscoring the need for proactive screening, assessment, and management to mitigate symptoms and adverse events [AEs] (i.e., “supportive care (SC) practices”). Little is known about the real-world systematic use of such strategies in routine MM clinical care. A 3 center pilot study aims to describe documented adherence to evidence-based SC practices, and then intervene with a novel ePRO and supportive care planning system (CPS) technology designed to improve adherence. Methods: 90 patients and 90 controls with MM from 3 sites are being evaluated in this pilot study. A scorecard to measure provider use of evidence-based SC practices, at the patient level, was developed by an interdisciplinary team, using an iterative process of literature review and a modified Delphi technique to gain metric consensus. The scorecard is applied to medical records of intervention subjects and controls over an 8-12 week period. Results: Scorecards have been completed to date for 20 historical controls & 7 intervention subjects; remaining to be complete by meeting. For controls, screening for specific symptoms was fairly consistent, but documentation of detailed assessments (e.g., severity, functional impact) and management strategies was poor. For intervention subjects to date, screening almost always was documented, and both detailed assessment and intervention was better than for controls in most cases. See table. Conclusions: For controls, providers regularly documented symptom/AE screening, yet detailed assessments and evidence of interventions were inconsistently documented. Barriers may include the limited availability of effective interventions for symptoms such as CIPN & fatigue, as well as time barriers to effective symptom assessment and management, and its documentation. Almost all metrics were better in intervention subjects to date. Although documentation may not reflect actual practice, improvement in detailed assessment and management strategies is likely needed, and a novel CPS technology may improve this state of affairs; evaluation ongoing. [Table: see text]


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