scholarly journals Communication of Pharmacogenomic Test Results and Treatment Plans in Pediatric Oncology: Deliberative Stakeholder Consultations with Parents

2021 ◽  
Author(s):  
Cristina Longo ◽  
Vasiliki Rahimzadeh ◽  
Gillian Bartlett
Keyword(s):  
Small Group ◽  
Brain Cancer ◽  
Clinical Decision Making ◽  
Treatment Options ◽  
Effective Communication ◽  
Clinical Decision ◽  
Current Treatment ◽  
Communication Strategy ◽  
Communication Preferences ◽  
Care Experience

Abstract Background: Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis. Objective: We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations.Methods: Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations – a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the ‘mixed’ consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT.Results: Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended.Conclusions: Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.

scholarly journals Communication of Pharmacogenomic Test Results and Treatment Plans in Pediatric Oncology: Deliberative Stakeholder Consultations with Parents

2020 ◽  
Author(s):  
Cristina Longo ◽  
Vasiliki Rahimzadeh ◽  
Gillian Bartlett
Keyword(s):  
Small Group ◽  
Brain Cancer ◽  
Clinical Decision Making ◽  
Treatment Options ◽  
Effective Communication ◽  
Clinical Decision ◽  
Current Treatment ◽  
Communication Strategy ◽  
Communication Preferences ◽  
Care Experience

Abstract Background: Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis. Objective: We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations.Methods: Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations – a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the ‘mixed’ consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT.Results: Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended.Conclusions: Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.

scholarly journals Communication of Pharmacogenomic test results and treatment plans in pediatric oncology: deliberative stakeholder consultations with parents

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Cristina Longo ◽  
Vasiliki Rahimzadeh ◽  
Gillian Bartlett
Keyword(s):  
Small Group ◽  
Brain Cancer ◽  
Clinical Decision Making ◽  
Treatment Options ◽  
Effective Communication ◽  
Clinical Decision ◽  
Current Treatment ◽  
Communication Strategy ◽  
Communication Preferences ◽  
Care Experience

Abstract Background Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis. Objective We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations. Methods Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations – a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the ‘mixed’ consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT. Results Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended. Conclusions Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.

scholarly journals Communication of Pharmacogenomic Test Results and Treatment Plans in Pediatric Oncology: Deliberative Stakeholder Consultations with Parents

2020 ◽  
Author(s):  
Cristina Longo ◽  
Vasiliki Rahimzadeh ◽  
Gillian Bartlett
Keyword(s):  
Brain Cancer ◽  
Clinical Decision Making ◽  
Treatment Options ◽  
Effective Communication ◽  
Clinical Decision ◽  
Communication Strategy ◽  
Communication Preferences ◽  
Care Experience ◽  
Unbiased Manner ◽  
Treatment Plans

Abstract Background: Effective communication in support of clinical decision making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) to diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment, but may hinder effective communication since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis.Objective: We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding implementation of the LDT in standard care using deliberative stakeholder consultations.Methods: Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended single deliberative consultations. Parents discussed four questions about potential communication issues that may arise with the LDT in practice. Of these, five parents attended a mixed consultation for the purpose of developing concrete recommendations for implementation of the LDT.Results: Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended.Conclusions: Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists implementing the test in practice.

scholarly journals A Review of the Current Treatment of Tourette Syndrome

2020 ◽  
Vol 25 (5) ◽  
pp. 401-412
Author(s):  
Mary F. Seideman ◽  
Travis A. Seideman
Keyword(s):  
Tourette Syndrome ◽  
Clinical Decision Making ◽  
School Attendance ◽  
Treatment Options ◽  
Clinical Decision ◽  
Current Treatment ◽  
Obsessive Compulsive ◽  
Compulsive Disorder ◽  
Wide Range ◽  
Hyperkinetic Movement Disorder

Tourette syndrome is a hyperkinetic movement disorder that presents before age 18 years and involves motor and phonic tics that may present with a wide range of severity. The severity and presentation of tics in an individual may fluctuate over time. Tourette syndrome may affect social relationships and school attendance, and may result in depression. Comorbidities are common, with attention-deficit/hyperactivity disorder and obsessive-compulsive disorder being most common. The literature supporting optimal treatment is limited but provides a framework for clinical decision-making. The focus of this review is to discuss the symptoms and possible causes of Tourette syndrome and current non-pharmacologic and pharmacologic treatment options, to help practitioners optimize care for pediatric patients with this disease.

Management of thoracic aortic lesions - the future is endovascular

VASA ◽  
2012 ◽  
Vol 41 (3) ◽  
pp. 163-176 ◽  
Author(s):  
Weidenhagen ◽  
Bombien ◽  
Meimarakis ◽  
Geisler ◽  
A. Koeppel
Keyword(s):  
Thoracic Aorta ◽  
Clinical Decision Making ◽  
Treatment Options ◽  
Clinical Decision ◽  
Clinical Results ◽  
Treatment Modalities ◽  
Traumatic Rupture ◽  
Descending Thoracic Aorta ◽  
New Treatment ◽  
Aneurysm Dissection

Open surgical repair of lesions of the descending thoracic aorta, such as aneurysm, dissection and traumatic rupture, has been the “state-of-the-art” treatment for many decades. However, in specialized cardiovascular centers, thoracic endovascular aortic repair and hybrid aortic procedures have been implemented as novel treatment options. The current clinical results show that these procedures can be performed with low morbidity and mortality rates. However, due to a lack of randomized trials, the level of reliability of these new treatment modalities remains a matter of discussion. Clinical decision-making is generally based on the experience of the vascular center as well as on individual factors, such as life expectancy, comorbidity, aneurysm aetiology, aortic diameter and morphology. This article will review and discuss recent publications of open surgical, hybrid thoracic aortic (in case of aortic arch involvement) and endovascular repair in complex pathologies of the descending thoracic aorta.

scholarly journals ALK inhibitors, resistance development, clinical trials

2018 ◽  
Vol 25 ◽  
pp. 59 ◽  
Author(s):  
J.M. Rothenstein ◽  
N. Chooback
Keyword(s):  
Clinical Trials ◽  
Patient Outcomes ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Current Treatment ◽  
Resistance Development ◽  
Ongoing Research ◽  
Alk Positive ◽  
Emergence Of Resistance ◽  
Key Questions

The treatment of advanced non-small-cell lung cancer (nsclc) has undergone a paradigm shift since the early 2000s. The identification of molecular subtypes of the disease, based on oncogenic drivers, has led to the development of personalized medicine and the ability to deliver molecularly targeted therapies to patients. In the 10 years that have elapsed since the discovery of the ALK gene in a patient with nsclc, several active drugs have moved rapidly from bench to bedside, and multiple others are currently in clinical trials. Those developments have led to important improvements in patient outcomes, while simultaneously raising key questions about the optimal treatment for ALK-positive nsclc. The inevitable emergence of resistance to alk-directed therapy is central to ongoing research and daily clinical practice for affected patients. In the present review, we highlight the current treatment landscape, the available and emerging clinical trials, and the evolving clinical decision-making in ALK-positive nsclc, with a focus on Canadian practice.

Aortoiliac Reconstruction

2017 ◽  
Author(s):  
Mark K. Eskandari ◽  
Michael J Nooromid
Keyword(s):  
Clinical Decision Making ◽  
Preoperative Evaluation ◽  
Treatment Options ◽  
Surgical Techniques ◽  
Clinical Decision ◽  
Occlusive Disease ◽  
Aortobifemoral Bypass ◽  
Aortoiliac Occlusive Disease ◽  
Atherosclerotic Occlusive Disease ◽  
Aortoiliac Reconstruction

This review outlines the preoperative evaluation, clinical decision making, and surgical treatment options for patients with aortoiliac occlusive disease. It also details the open surgical techniques for the treatment of aortoiliac occlusive disease and reviews endovascular treatment options. The discussion of treatment options includes the potential complications and expected outcomes, as well as steps that can be taken to optimize surgical results. Key words: aortobifemoral bypass, aortoiliac reconstruction, atherosclerotic occlusive disease, endovascular reconstruction, femoral endarterectomy, iliac angioplasty, iliac stenting, peripheral vascular disease 

Neuralgic amyotrophy: a paradigm shift in diagnosis and treatment

2020 ◽  
Vol 91 (8) ◽  
pp. 879-888 ◽  
Author(s):  
Clemens Gstoettner ◽  
Johannes A Mayer ◽  
Stephanie Rassam ◽  
Laura A Hruby ◽  
Stefan Salminger ◽  
...  
Keyword(s):  
High Resolution ◽  
Peripheral Nerve ◽  
Clinical Decision Making ◽  
Current Knowledge ◽  
Treatment Options ◽  
Treatment Algorithm ◽  
Clinical Decision ◽  
Neuralgic Amyotrophy ◽  
Positive Effects ◽  
Nerve Surgery

Neuralgic amyotrophy (NA), also known as Parsonage-Turner syndrome, is characterised by sudden pain attacks, followed by patchy muscle paresis in the upper extremity. Recent reports have shown that incidence is much higher than previously assumed and that the majority of patients never achieve full recovery. Traditionally, the diagnosis was mainly based on clinical observations and treatment options were confined to application of corticosteroids and symptomatic management, without proven positive effects on long-term outcomes. These views, however, have been challenged in the last years. Improved imaging methods in MRI and high-resolution ultrasound have led to the identification of structural peripheral nerve pathologies in NA, most notably hourglass-like constrictions. These pathognomonic findings have paved the way for more accurate diagnosis through high-resolution imaging. Furthermore, surgery has shown to improve clinical outcomes in such cases, indicating the viability of peripheral nerve surgery as a valuable treatment option in NA. In this review, we present an update on the current knowledge on this disease, including pathophysiology and clinical presentation, moving on to diagnostic and treatment paradigms with a focus on recent radiological findings and surgical reports. Finally, we present a surgical treatment algorithm to support clinical decision making, with the aim to encourage translation into day-to-day practice.

A Multiscale Specimen-Specific Data Set to Enable Comprehensive Modeling and Simulation of the Tibiofemoral Joint

2013 ◽  
Author(s):  
Snehal Chokhandre ◽  
Ahmet Erdemir
Keyword(s):  
Clinical Decision Making ◽  
Mechanical Response ◽  
Multiple Scales ◽  
Treatment Options ◽  
Complex Structure ◽  
Clinical Decision ◽  
Fe Analysis ◽  
Data Set ◽  
Tibiofemoral Joint ◽  
Joint Biomechanics

The tibiofemoral joint is a complex structure and its overall mechanical response is dictated by its numerous substructures at both macro and micro levels. An in-depth understanding of the mechanics of the joint is necessary to develop preventative measures and treatment options for pathological conditions and common injuries. Finite element (FE) analysis is a widely used tool in joint biomechanics studies focused on understanding the underlying mechanical behavior at joint, tissue and cell levels [1]. Studies, regardless of their purpose (descriptive or predictive), when employing FE analysis, require anatomical and mechanical data at single or multiple scales. It is also critical that FE representations are validated and closely represent specifics of the joint of interest, anatomically and mechanically. This is an utmost need if these models are intended to be used to support clinical decision making (in surgery or for rehabilitation) and for the development of implants.

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