New-onset seizure survey of epilepsy centers in the United States.

OBJECTIVES: Children presenting with new-onset seizures have variable access to resources and may not receive timely and adequate treatment. Some may experience adverse consequences when not evaluated in a timely manner by appropriate medical providers. Consequences can be especially severe for children under the age of two and for children who have psychiatric, cognitive, and behavioral comorbidities. There are no published data on how children with new-onset seizure are evaluated and treated across the US. Our goal was to gain insight into how different epilepsy centers across the country evaluate and treat children with new-onset seizures. METHODS: We conducted a survey of Epilepsy Centers in the US that are part of the Pediatric Epilepsy Research Consortium (PERC) and focused on children presenting with new-onset seizures; PERC is a group of pediatric epilepsy providers and researchers who participate in collaborative multicenter research in pediatric epilepsy with the goal of improving outcomes in children with pediatric epilepsy. The questionnaire was developed by the authors of this study. It was designed to provide a descriptive assessment of the consistency and variability in how patients with new-onset seizure are evaluated and treated at epilepsy sites across the country. The questionnaire was designed to assure all points of interest were explored. The questions were aimed at describing access to care, how care is delivered, whether centers prioritize based on clinical presentation and/or age, and availability of resources. The survey was sent to 80 epileptologists at 42 different Epilepsy Centers that are part of PERC. RESULTS: Respondents included 29 pediatric epileptologists representing 24 unique centers. In the cases where there were multiple respondents from each center, response of the most senior epileptologist was used. It is possible that the senior epileptologist may have not known about the center as much as a junior epileptologist, but this was used to establish consistencies among centers with multiple respondents. Results showed that 30% of centers had a dedicated new-onset seizure clinic. The median time for children to be seen was two to four weeks, and 12% reported that it takes more than five weeks until the patient is seen. There was a trend toward centers with new-onset seizure clinic having less wait times. Most centers identified lack of adequate care based on insurance coverage, resources, long wait times, and long travel times. SIGNIFICANCE: Most centers (70%) do not have a dedicated new-onset seizure clinic. Children presenting with new-onset seizures often do not receive timely and comprehensive care because of limitations in resources and lack of established standard of care. Standardizing care for patients presenting with new-onset seizures has not yet occurred in the US. Many centers do not have a screening process and employ staff other than physicians or nurses for screening and triaging patients. This study shows that having a neurologist or epileptologist in charge of triaging does not reduce wait times. This survey revealed that there is substantial variability in how these patients are evaluated. Although this study shows a trend for epilepsy centers with new-onset seizure clinic having less wait times, even when there is a new-onset seizure clinic, wait times can be greater than five weeks. Overall, however, a new-onset seizure clinic may be an effective way to improve access to timely and efficient care for these patients.

Developing clinical practice guidelines for epilepsy: A report from the ILAE Epilepsy Guidelines Working Group.

Clinical practice guidelines (CPGs) contain evidence-based recommendations to guide clinical care, policy development, and quality of care improvement. A recent systematic review of epilepsy guidelines identified considerable variability in the quality of available guidelines. Although excellent frameworks for CPG development exist, processes are not followed uniformly internationally, and resources to develop CPGs may be limited in certain settings. An International League Against Epilepsy (ILAE) working group was charged with proposing methodology to guide the development of future epilepsy-specific CPGs. A comprehensive literature search (1985-2014) identified articles related to CPG development and handbooks. Guideline handbooks were included if they were publicly available, and if their methodology had been used to develop CPGs. The working group's expertise also informed the creation of methodologies and processes to develop future CPGs for the ILAE. Five handbooks from North America (American Academy of Neurology), Europe (Scottish Intercollegiate Guidelines Network & National Institute for Health and Care Excellence), Australia (National Health and Medical Research Council), World Health Organization (WHO), and additional references were identified to produce evidence-based, consensus-driven methodology for development of epilepsy-specific CPGs. Key components of CPG development include the following: identifying the topic and defining the scope; establishing a working group; identifying and evaluating the evidence; formulating recommendations and determining strength of recommendations; obtaining peer reviews; dissemination, implementation, and auditing; and updating and retiring the CPG. A practical handbook and toolkit was developed. The resulting CPG development toolkit should facilitate the development of high-quality ILAE CPGs to improve the care of persons with epilepsy.

Anaphylaxis: Definition and criteria.

Anaphylaxis is a systemic allergic reaction that may be severe and life-threatening. With more than a dozen anaphylaxis definitions proposed over the past several decades and several diagnostic criteria in circulation, there is a need for a multinational consensus definition to simplify management across specialties. Anaphylaxis diagnostic criteria are more alike than they are different, and approaches of the National Institute of Allergy and Infectious Disease, World Allergy Organization, and Brighton Collaborative help to add granularity and perspective to patient management. Anaphylaxis occurs across a spectrum of severity within populations, although, among individual patients, there is some evidence to suggest more consistency for an individual allergen. Still, severity is influenced by a number of factors that demonstrate variability: factors that relate to allergen triggers, patient characteristics, and treatments received. Severity of anaphylaxis impacts management, and recent guidelines provide approaches that consider individual factors to inform both strong and conditional recommendations. Conditional recommendations serve as navigational signals for shared decision-making when patient expertise is leveraged to inform individual preferences and values together with clinician expertise in anaphylaxis management to provide patient care bespoke to each patient. As novel approaches to both prevention and treatment of anaphylaxis emerge, an understanding of the significance of strong and conditional recommendations becomes critical to providing individualized and appropriate care for patients at risk for anaphylaxis.

Trends in the Management of Non-emergent Surgery for Diverticular Disease and the Impact of Practice Parameters.

BACKGROUND: Due to the rise in diverticular disease, the ASCRS developed practice parameters to ensure high-quality patient care. Our study aims to evaluate the impact of the 2014 practice parameters on the treatment of non-emergent left-sided diverticular disease. METHODS: This is a retrospective cohort study using the ACS-National Surgical Quality Improvement Project (ACS-NSQIP). Elective sigmoid resections performed by year were evaluated and compared before and after practice parameters were published. RESULTS: Overall, 46,950 patients met inclusion criteria. There was a significant decrease in the number of non-emergent operations when evaluating before and after guideline implementation (P < .001). There was a significant decrease in the number of patients younger than 50 years of age operated electively for diverticular disease (25.8% vs. 23.9%, P = .005). Adoption of minimally invasive surgery continued to increase significantly throughout the study period. CONCLUSIONS: Publication of the 2014 ASCRS practice parameters is associated with a change in management of diverticular disease in the non-emergent setting.

Impact of the AACAP practice parameters on the metabolic adverse event monitoring for second-generation antipsychotics (SGAs) in children and adolescents.

INTRODUCTION: The objective of our study was to evaluate the impact of the publication of the American Academy of Child and Adolescent Psychiatry (AACAP) practice parameters for SGA metabolic monitoring in 2011 on SGA metabolic monitoring uptake among pediatric SGA recipients. METHODS: This was a retrospective study of children 1-17 years of age who initiated SGA treatment from Jan 2010 to December 2018 using a national Electronic Medical Records database. A segmented regression of interrupted time-series (ITS) analysis was conducted to analyze the change of metabolic monitoring rates for Body Mass Index (BMI), Blood Glucose (BG), and Total Cholesterol (CHL) 9 quarters pre- and 26 quarters post-the publication of the AACAP practice parameters. RESULTS: The analytical cohort included 9620 children and adolescents who initiated SGA treatment during the study period. The ITS results showed that the publication of the AACAP practice parameter for SGA metabolic monitoring was associated with a 12.61 percentage points (p < 0.0002) immediate increase in BMI monitoring rate, (increased from 29.10% in Q4 2011 to 40.10% in Q3 2012). There was a positive trend of BMI monitoring rate prior to the publication of AACAP practice parameters, which continued during the post-publication period. Neither immediate nor sustained changes in the association of monitoring rates for BG and CHL were observed after the issuance of the guidelines. CONCLUSION: The publication of AACAP practice parameters for SGA monitoring was associated with a significant improvement in the monitoring for BMI, but not for BG and CHL in children and adolescents.

Evidence-Based Protocols in Child Neurology.

Medical care has become more complex as the scientific method has expanded medical knowledge. Medicine is also now practiced across different medical systems of varying complexity, and creating standard treatment guidelines is one way of establishing uniform treatment across these systems. The creation of guidelines ensures the delivery of quality medical care and improved patient outcomes. Evidence-based medicine is the application of scientific research to produce these treatment guidelines. This article shall focus on the current treatment guidelines used for inpatient pediatric neurology.

Translating Evidence to Optimize Patient Care Using GRADE.

Optimal evidence-based clinical practice requires systematic summaries of the best available evidence, including ratings of the quality of that evidence, and is facilitated by the availability of trustworthy guidelines. In this review, we describe the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) approach to rating quality of evidence and moving from evidence to recommendations using examples from allergy-immunology. GRADE focuses on systematic summaries of the best evidence, systematic reviews and trustworthy guidelines, and emphasizes a structured approach to determining quality (certainty) of bodies of evidence, absolute magnitude of effects of desirable and undesirable consequences (benefits and harms), and use of evidence to develop clinical recommendations. Adopted by over 110 organizations worldwide, including the American Academy of Allergy, Asthma, and Immunology/American College of Allergy, Asthma, and Immunology Joint Task Force on Practice Parameters, GRADE is foundational to the optimal interpretation of research evidence and its application in clinical practice. This review supports the clinician's ability to find and use the information in GRADE guidelines to help care for patients in the clinic.

Illinois Dental Anesthesia and Sedation Survey for 2016.

A statewide decennial survey was sent to practicing dentists holding sedation or general anesthesia permits to identify office sedation/general anesthesia trends and practices over the last 10 years. This survey constitutes the third such survey, spanning a total of 20 years. Of the 234 respondents in the 2016 survey, 34% held an Illinois moderate sedation permit and 64% held a general anesthesia permit. Oral and maxillofacial surgeons represented the majority of respondents (143/234; 61%). The remainder of responses were from general dentists (39; 17%) pediatric dentists (32; 14%), periodontists (16; 7%), dentist anesthesiologists (3; 1.3%) and 1 periodontist/dentist anesthesiologist. Surveys over the 20 years revealed the following significant trends: an increase in practitioners current in advanced cardiac life support certification, an increase in the number of non-oral maxillofacial surgeons with a sedation permit, an increase in providers of moderate sedation, and an increase in offices equipped with end-tidal CO2 and electrocardiogram monitoring. However, a number of providers were identified as not compliant with certain state mandates. For example, many respondents failed to meet minimum office team staffing requirements during sedation, hold semiannual office emergency drills, and establish written emergency management protocols.

Introduction to supplement: the current status of treatment for ALS.

ALS is a lethal neurodegenerative disease wherein the diagnosis is often delayed. Our understanding of the pathobiology is slowly expanding, and the number of new genes is rapidly increasing. The development of potential treatments targeting specific mechanisms is beginning to offer hope. Evidence-based treatments and the development of quality measures have raised the standard of care. The current status of treatment for ALS includes one drug riluzole that slows progression modestly, and another drug edaravone that was recently approved by FDA to slow ALS progression. Multidisciplinary clinics and symptomatic treatments ease the burden of ALS and prolong life. An overview of these treatments is provided here.

Practice parameter for the assessment and management of youth involved with the child welfare system.

This Practice Parameter presents principles for the mental health assessment and management of youth involved with the child welfare system. Important definitions, background, history, epidemiology, mental health care use, and functional outcomes are described. Practical guidance regarding child welfare-related considerations for evaluation and management are discussed.

Adherence with allergen immunotherapy labeling guidelines.

BACKGROUND: Little is known about the adherence rate to allergen immunotherapy (AIT) labeling guidelines. OBJECTIVE: To assess adherence to labeling guidelines of AIT Practice Parameter 2011 at University of Michigan Health Service. METHODS: AIT vials of 320 patients who received their care at the University of Michigan Health Service were reviewed. Data collected looked at patient identifiers (PI), concentrations in volume/volume (v/v) format, color coding, allergen content, expiration date and instructions about AIT dosing, and systemic reaction treatment. Data were analyzed by using χ(2) test and the Fisher exact test and logistic regression. RESULTS: Of 238 non-university formulated labels, 65% had 2 PIs, 62% had a v/v concentration, 41% had color coding, 71% had the content listed, and 100% had a recorded expiration date. Only 21% had all 5 recommended components. All 82 University vials had 5 components. Labels with 2 PIs were more likely to have a v/v concentration with its corresponding color coding (odds ratio [OR] 3.84 [95% CI, 1.9-7.7]; P < .001). Labels that specified the extract's content were more likely to be color coded or to have a v/v concentration listed (OR 6.3 [95% CI, 3.4-11.8]; P < .001). For all AIT vials, complete labels were significantly more likely to have a clear buildup schedule (OR 9.6 [95% CI, 4.2-23.2]; P < .001), dosing adjustment after a missed dose (OR 8.2 [95% CI, 3.4-19.8]; P < .001) or after a reaction (OR 13.7 [95% CI, 7.8-2.1]; P < .001), and clear systemic reaction treatment instructions (OR 9.7 [95% CI, 7.8-24.1]; P < .001). CONCLUSION: Fewer than 25% of the nonuniversity prescribers adhered to AIT practice parameters 5 years after publication. Recording 2 PIs, the v/v concentration, or the color coding increased the likelihood of having a complete label. Complete label contents were associated with clear instructions about AIT dosing and reaction treatment and/or dose adjustments.

The just right challenge.

This paper is based on a keynote address "The Just Right Challenge" given on October 14, 1993, at Massachusetts Association for Occupational Therapy Annual Conference in Marlborough, MA. The occupational therapy profession is accountable to the society it serves. This paper outlines some key internal and external influences affecting the profession as it prepares for the next decade. Internal influences include the sphere of expertise, role clarification, and competencies. External influences include the use of service extenders, cross training, and practice parameters.

Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder.

Autism spectrum disorder is characterized by patterns of delay and deviance in the development of social, communicative, and cognitive skills that arise in the first years of life. Although frequently associated with intellectual disability, this condition is distinctive in its course, impact, and treatment. Autism spectrum disorder has a wide range of syndrome expression and its management presents particular challenges for clinicians. Individuals with an autism spectrum disorder can present for clinical care at any point in development. The multiple developmental and behavioral problems associated with this condition necessitate multidisciplinary care, coordination of services, and advocacy for individuals and their families. Early, sustained intervention and the use of multiple treatment modalities are indicated.

Phelan-McDermid syndrome: a review of the literature and practice parameters for medical assessment and monitoring.

Autism spectrum disorder (ASD) and intellectual disability (ID) can be caused by mutations in a large number of genes. One example is SHANK3 on the terminal end of chromosome 22q. Loss of one functional copy of SHANK3 results in 22q13 deletion syndrome or Phelan-McDermid syndrome (PMS) and causes a monogenic form of ASD and/or ID with a frequency of 0.5% to 2% of cases. SHANK3 is the critical gene in this syndrome, and its loss results in disruption of synaptic function. With chromosomal microarray analyses now a standard of care in the assessment of ASD and developmental delay, and with the emergence of whole exome and whole genome sequencing in this context, identification of PMS in routine clinical settings will increase significantly. However, PMS remains a rare disorder, and the majority of physicians have never seen a case. While there is agreement about core deficits of PMS, there have been no established parameters to guide evaluation and medical monitoring of the syndrome. Evaluations must include a thorough history and physical and dysmorphology examination. Neurological deficits, including the presence of seizures and structural brain abnormalities should be assessed as well as motor deficits. Endocrine, renal, cardiac, and gastrointestinal problems all require assessment and monitoring in addition to the risk of recurring infections, dental and vision problems, and lymphedema. Finally, all patients should have cognitive, behavioral, and ASD evaluations. The objective of this paper is to address this gap in the literature and establish recommendations to assess the medical, genetic, and neurological features of PMS.