Radiomics workflow definition & challenges - German priority program 2177 consensus statement on clinically applied radiomics.

OBJECTIVES: Achieving a consensus on a definition for different aspects of radiomics workflows to support their translation into clinical usage. Furthermore, to assess the perspective of experts on important challenges for a successful clinical workflow implementation. MATERIALS AND METHODS: The consensus was achieved by a multi-stage process. Stage 1 comprised a definition screening, a retrospective analysis with semantic mapping of terms found in 22 workflow definitions, and the compilation of an initial baseline definition. Stages 2 and 3 consisted of a Delphi process with over 45 experts hailing from sites participating in the German Research Foundation (DFG) Priority Program 2177. Stage 2 aimed to achieve a broad consensus for a definition proposal, while stage 3 identified the importance of translational challenges. RESULTS: Workflow definitions from 22 publications (published 2012-2020) were analyzed. Sixty-nine definition terms were extracted, mapped, and semantic ambiguities (e.g., homonymous and synonymous terms) were identified and resolved. The consensus definition was developed via a Delphi process. The final definition comprising seven phases and 37 aspects reached a high overall consensus (> 89% of experts "agree" or "strongly agree"). Two aspects reached no strong consensus. In addition, the Delphi process identified and characterized from the participating experts' perspective the ten most important challenges in radiomics workflows. CONCLUSION: To overcome semantic inconsistencies between existing definitions and offer a well-defined, broad, referenceable terminology, a consensus workflow definition for radiomics-based setups and a terms mapping to existing literature was compiled. Moreover, the most relevant challenges towards clinical application were characterized. CRITICAL RELEVANCE STATEMENT: Lack of standardization represents one major obstacle to successful clinical translation of radiomics. Here, we report a consensus workflow definition on different aspects of radiomics studies and highlight important challenges to advance the clinical adoption of radiomics. KEY POINTS: Published radiomics workflow terminologies are inconsistent, hindering standardization and translation. A consensus radiomics workflow definition proposal with high agreement was developed. Publicly available result resources for further exploitation by the scientific community.

Co-creating an educational resource to promote the uptake of Skin-to-Skin Contact in Saudi Arabia.

AIM: This paper focuses on the co-creation approach to develop culturally and linguistically appropriate educational interventions to promote the uptake of skin-to-skin contact. BACKGROUND: Skin-to-skin contact is beneficial to mothers and newborns, but it is rarely practised in Saudi Arabia. Co-creation involving service users to develop evidence-based resources about skin-to-skin contact relevant to the target population is an approach increasingly used to improve health outcomes. METHOD: A three-step method was used to develop the educational intervention including: (1) a systematic scoping review to identify the evidence-based information for education regarding skin-to-skin contact between mother and baby post-birth; (2) Co-creation of the resources using the Knowledge to Action Framework. The resource was developed collaboratively with academic staff from Australia and health care staff from Saudi hospital; and (3) Finalisation of the educational materials through a consensus development conference and Implementation. FINDINGS: The systematic scoping review generated useful information about the gaps in knowledge and barriers to skin-to-skin practice. Information was tailored and translated according to the needs of the Saudi population. A variety of educational materials including pamphlets, a PowerPoint presentation and a short video were co-created with the help of the stakeholders. Consensus was reached when 93% (87-100%) of the participants agreed about the mode of delivery and appropriateness of the PowerPoint and 100% agreed on the e-pamphlets and video. DISCUSSION: The skin-to-skin online educational resource was created by integrating co-creation principles and the Knowledge to Action framework with the aim of developing and customizing a culturally appropriate intervention using the best available evidence. By engaging in co-creation stakeholders gained a sense of ownership and were more willing to adopt and implement the intervention.

Placenta accreta spectrum: treatment consensus in a resource-limited setting.

BACKGROUND: Management options for placenta accreta spectrum disorder are multiple, without a clear picture of which one is superior. Management guidelines describe the use of a wide range of human and technological resources that are not always available in resource-limited settings. OBJECTIVE: This consensus seeks agreement on general guidelines that facilitate the management of placenta accreta spectrum in low- and middle-income countries. STUDY DESIGN: Consensus was developed using the modified Delphi methodology, incorporating 3 successive rounds in which 6 dimensions of placenta accreta spectrum treatment were discussed: pathway for placenta accreta spectrum care, roles at different levels of care, organization of the interdisciplinary teams at the reference hospitals, training interdisciplinary teams, placenta accreta spectrum surgical treatment, and management of placenta accreta spectrum patients without prenatal diagnosis. RESULTS: Consensus was achieved on all questions on placenta accreta spectrum management. Specific low- and middle-income countries problems were addressed, trying to establish guidelines for the construction of trained placenta accreta spectrum interdisciplinary teams, as well as the rational use of the different therapeutic options available in a limited resources setting. In addition, it is highlighted the need to facilitate contact between patients affected by this disease and the interdisciplinary groups, overcoming administrative barriers typical of some health systems. CONCLUSION: We present a consensus on the treatment of placenta accreta spectrum in a low- and middle-income countries, based on local experts' opinions. Construction of high-quality scientific evidence is essential in settings with limited resources.

Cultural and linguistic appropriateness of a web-based breastfeeding educational resource for Saudi women: Consensus development conference approach.

AIM: The purpose of this study was to investigate the cultural and linguistic appropriateness of the content, images and layout of the web-based breastfeeding educational resource for Saudi women using a consensus development approach. BACKGROUND: Although the World Health Organization highly recommends exclusive breastfeeding, there is a decline in breastfeeding rates in Saudi Arabia, especially during hospital stay. The combining of health professional support with e-technology tools has been proposed as a method to increase exclusive breastfeeding. However, the cultural and linguistic appropriateness of an e-technology-based approach has not been explored in Saudi women. METHODS: After developing a content draft of the web-based breastfeeding educational resource specific to Saudi culture, an online consensus development conference was organised with ten participants including two university researchers and eight health care providers to investigate the cultural and linguistic appropriateness of the educational content. The participants from Saudi Arabia were Saudi mothers who had breastfeeding experiences and were key maternity health professionals employed at the Maternity and Children Hospital of Dammam, Saudi Arabia. The SQUIRE checklist was used in the reporting of this study. RESULTS: Feedback received prior to the meeting showed that 81% of the content was acceptable and minor changes were required. Changes were made to the content based on the suggestions and feedback received. The consensus group accepted all the changes and the content was finalised. CONCLUSIONS: The online consensus development conference was found to be a very convenient way to decide on the cultural and linguistic appropriateness of the content of the web-based breastfeeding educational resource allowing the participation of experts from different countries; this was considered a critical step in ensuring the successful implementation of the intervention.

ACCORD guideline for reporting consensus-based methods in biomedical research and clinical practice: a study protocol.

BACKGROUND: Structured, systematic methods to formulate consensus recommendations, such as the Delphi process or nominal group technique, among others, provide the opportunity to harness the knowledge of experts to support clinical decision making in areas of uncertainty. They are widely used in biomedical research, in particular where disease characteristics or resource limitations mean that high-quality evidence generation is difficult. However, poor reporting of methods used to reach a consensus - for example, not clearly explaining the definition of consensus, or not stating how consensus group panellists were selected - can potentially undermine confidence in this type of research and hinder reproducibility. Our objective is therefore to systematically develop a reporting guideline to help the biomedical research and clinical practice community describe the methods or techniques used to reach consensus in a complete, transparent, and consistent manner. METHODS: The ACCORD (ACcurate COnsensus Reporting Document) project will take place in five stages and follow the EQUATOR Network guidance for the development of reporting guidelines. In Stage 1, a multidisciplinary Steering Committee has been established to lead and coordinate the guideline development process. In Stage 2, a systematic literature review will identify evidence on the quality of the reporting of consensus methodology, to obtain potential items for a reporting checklist. In Stage 3, Delphi methodology will be used to reach consensus regarding the checklist items, first among the Steering Committee, and then among a broader Delphi panel comprising participants with a range of expertise, including patient representatives. In Stage 4, the reporting guideline will be finalised in a consensus meeting, along with the production of an Explanation and Elaboration (E&E) document. In Stage 5, we plan to publish the reporting guideline and E&E document in open-access journals, supported by presentations at appropriate events. Dissemination of the reporting guideline, including a website linked to social media channels, is crucial for the document to be implemented in practice. DISCUSSION: The ACCORD reporting guideline will provide a set of minimum items that should be reported about methods used to achieve consensus, including approaches ranging from simple unstructured opinion gatherings to highly structured processes.

Posicionamento da ANCP e SBGG sobre tomada de decisão compartilhada em cuidados paliativos / Posicionamiento de la ANCP y SBGG sobre la toma de decisiones compartida en cuidados paliativos / Position statement of ANCP and SBGG on shared decision-making in palliative care

Os cuidados de saúde com pacientes portadores de doenças graves usualmente implicam a necessidade de tomada de um grande número de decisões, envolvendo desde a forma como a informação é compartilhada até quais procedimentos diagnósticos ou terapêuticos serão adotados. A maneira como tais decisões são tomadas têm importantes implicações do ponto de vista individual e coletivo, podendo contribuir tanto para o alívio como para o agravamento do sofrimento. No presente documento de consenso, o Comitê de Bioética da Academia Nacional de Cuidados Paliativos (ANCP) e a Comissão Permanente de Cuidados Paliativos da Sociedade Brasileira de Geriatria e Gerontologia (SBGG) adotam os princípios da escuta compassiva proposto por Saunders, da natureza do sofrimento proposto por Cassel, dos cuidados preservadores da dignidade propostos por Chochinov e da humildade cultural como ponto de partida para a construção de um posicionamento oficial da ANCP e SBGG acerca do processo de tomada de decisão compartilhada em cuidados paliativos. O posicionamento estabelece que, em contraposição aos modelos paternalistas e consumistas, o processo de tomada de decisão no âmbito dos cuidados paliativos deve seguir o modelo mutualista de decisão compartilhada, no qual as decisões são construídas a partir do diálogo entre profissionais de saúde e pacientes/familiares. O documento estabelece os pressupostos deste processo, os limites da autonomia de pacientes/familiares e profissionais de saúde, a distinção entre tratamentos fúteis e potencialmente inapropriados, bem como ratifica sua incompatibilidade com quaisquer formas de coerção e conflitos de interesse alheios ao melhor interesse dos pacientes.

Los cuidados de salud de pacientes portadores de enfermedades graves usualmente implican la necesidad de tomar un gran número de decisiones, que abarcan desde cómo se comparte la información hasta qué procedimientos diagnósticos o terapéuticos se adoptarán. La forma en que se toman tales decisiones tiene importantes implicaciones desde el punto de vista individual y colectivo, y puede contribuir tanto a aliviar como a agravar el sufrimiento. En el presente documento de consenso, el Comité de Bioética de la Academia Nacional de Cuidados Paliativos (ANCP) y la Comisión Permanente de Cuidados Paliativos de la Sociedad Brasileña de Geriatría y Gerontología (SBGG) adoptan los principios de la escucha compasiva propuesta por Saunders; de la naturaleza del sufrimiento propuesta por Cassel, de los cuidados preservadores de la dignidad propuestos por Chochinov y de la humildad cultural como punto de partida para la construcción de un posicionamiento oficial de la ANCP y SBGG sobre el proceso de toma de decisiones compartidas en cuidados paliativos. El posicionamiento establece que, en contraposición a los modelos paternalistas y consumistas, el proceso de toma de decisiones en el ámbito de los cuidados paliativos debe seguir el modelo mutualista de decisión compartida, donde las decisiones son construidas a partir del diálogo entre los profesionales de salud y los pacientes/familiares. El documento establece los supuestos de este proceso, los límites de la autonomía de los pacientes/familiares y de los profesionales de la salud, la distinción entre los tratamientos inútiles y los potencialmente inapropiados, así como ratifica su incompatibilidad con cualquier forma de coerción y los conflictos de intereses distintos del interés superior de los pacientes.

Health care for patients with serious illnesses usually implies the need to make a large number of decisions, ranging from how information is shared to which diagnostic or therapeutic procedures will be adopted. The method of such decision-making has important implications from an individual and collective point of view and may contribute to either relieving or aggravating suffering. In this consensus document, the Bioethics Committee of the Brazilian National Academy of Palliative Care (ANCP) and the Permanent Committee on Palliative Care of the Brazilian Geriatrics and Gerontology Society (SBGG) adopt the principles of compassionate listening proposed by Saunders, of the nature of suffering proposed by Cassel, of dignity-preserving care proposed by Chochinov, and of cultural humility as a starting point for the construction of an official position of ANCP and SBGG on shared decision-making in palliative care. The position statement posits that, unlike paternalistic and consumerist models, the decision-making process in the sphere of palliative care must follow the mutualistic model of shared decision, where decisions are built based on dialogue between healthcare professionals and patients/family. The document sets forth the assumptions of this process, the limits of autonomy of patients/family and healthcare professionals and the distinction between futile and potentially inappropriate treatments, besides ratifying its incompatibility with any forms of coercion and conflict of interest foreign to the best interests of patients.

Consensus on the treatment of dysphagia in Parkinson's disease.

BACKGROUND: Dysphagia is common in Parkinson's disease (PD). The effects of antiparkinsonian drugs on dysphagia are controversial. Several treatments for dysphagia are available but there is no consensus on their efficacy in PD. OBJECTIVE: To conduct a systematic review of the literature and to define consensus statements on the treatment of dysphagia in PD and related nutritional management. METHODS: A multinational group of experts in the field of neurogenic dysphagia and/or Parkinson's disease conducted a systematic evaluation of the literature and reported the results according to PRISMA guidelines. The evidence from the retrieved studies was analyzed and discussed in a consensus conference organized in Pavia, Italy, and the consensus statements were drafted. The final version of statements was subsequently achieved by e-mail consensus. RESULTS: The literature review retrieved 64 papers on treatment and nutrition of patients with PD and dysphagia, mainly of Class IV quality. Based on the literature and expert opinion in cases where the evidence was limited or lacking, 26 statements were developed. CONCLUSIONS: The statements developed by the Consensus panel provide a guidance for a multi-disciplinary treatment of dysphagia in patients with PD, involving neurologists, otorhinolaryngologists, gastroenterologists, phoniatricians, speech-language pathologists, dieticians, and clinical nutritionists.

[Guidelines-a European project]. / Leitlinien ­ ein europäisches Projekt.

Clinical guidelines represent the latest standard of medical knowledge concerning diagnostics, treatment and follow up of diseases and should support doctors and patients to choose the best treatment. Depending on the prevalence of a disease there exist less or more published data. Therefore, several levels of guidelines are possible. In case of few data the expertise of the attending physicians is of greater importance (S1, S2-guidelines). In case of a huge amount of literature, especially phase III studies or metaanalyses, a S3-guideline can be written. The article describes the process of developing a guideline in Germany under the guidance of the Association of the Scientific Medical Societies in Germany (AWMF) in comparison to the process by the European Association of Urology (EAU). The aim for the future is to join resources. Another aspect of the article is to inform about different procedures how to control the implementation of the guidelines.

Dysphagia in multiple system atrophy consensus statement on diagnosis, prognosis and treatment.

Multiple system atrophy (MSA) is a neurodegenerative disorder characterized by a combination of autonomic failure plus cerebellar syndrome and/or parkinsonism. Dysphagia is a frequent and disabling symptom in MSA and its occurrence within 5 years of motor onset is an additional diagnostic feature. Dysphagia can lead to aspiration pneumonia, a recognized cause of death in MSA. Guidelines for diagnosis and management of dysphagia in MSA are lacking. An International Consensus Conference among experts with methodological support was convened in Bologna to reach consensus statements for the diagnosis, prognosis, and treatment of dysphagia in MSA. Abnormalities of the oral and pharyngeal phases of swallowing, esophageal dysfunction and aspiration occur in MSA and worsen as the disease progresses. According to the consensus, dysphagia should be investigated through available screening questionnaires and clinical and instrumental assessment (videofluoroscopic study or fiberoptic endoscopic evaluation of swallowing and manometry) at the time of MSA diagnosis and periodically thereafter. There is evidence that dysphagia is associated with poor survival in MSA, however effective treatments for dysphagia are lacking. Compensatory strategies like diet modification, swallowing maneuvers and head postures should be applied and botulinum toxin injection may be effective in specific conditions. Percutaneous endoscopic gastrostomy may be performed when there is a severe risk of malnutrition and pulmonary complications, but its impact on survival is undetermined. Several research gaps and unmet needs for research involving diagnosis, prognosis, and treatment were identified.

Definition and management of colorectal polyposis not associated with APC/MUTYH germline pathogenic variants: AIFEG consensus statement.

An expert consensus panel convened by the Italian Association for Inherited and Familial Gastrointestinal Tumors (Associazione Italiana per lo Studio della Familiarità ed Ereditarietà dei Tumori Gastrointestinali, AIFEG) reviewed the literature and agreed on a number of position statements regarding the definition and management of polyposis coli without an identified pathogenic mutation on the APC or MUTYH genes, defined in the document as NAMP (non-APC/MUTYH polyposis).

Implications of the COVID-19 Pandemic for the Development and Update of Clinical Practice Guidelines: Viewpoint.

Following the rapid spread of a new type of coronavirus (SARS-CoV-2), nearly all countries have introduced temporary restrictions affecting daily life, with "social distancing" as a key intervention for slowing the spread of the virus. Despite the pandemic, the development or actualization of medical guidelines, especially in the rapidly changing field of oncology, needs to be continued to provide up-to-date evidence- and consensus-based recommendations for shared decision making and maintaining the treatment quality for patients. In this viewpoint, we describe the potential strengths and limitations of online conferences for medical guideline development. This viewpoint will assist guideline developers in evaluating whether online conferences are an appropriate tool for their guideline conference and audience.

Understanding minimum and ideal factor levels for participation in physical activities by people with haemophilia: An expert elicitation exercise.

INTRODUCTION: The benefits of physical activity (PA) for people with haemophilia (PWH) may include improvements in joint, bone and muscle health. However, the factor VIII activity level required to avoid a bleeding episode associated with PA is unknown. AIM: To elicit the opinion of clinical experts on the minimum level and ideal factor VIII activity ('level') required to avoid a bleeding episode during participation in different types of PA for PWH. METHODS: Based on the 2017 National Hemophilia Foundation PA descriptions, clinical experts estimated a minimally acceptable and an ideal factor level at which a bleed could be avoided. The uncertainty around estimates was quantified using an approach to construct a probability distribution to represent expert opinion. RESULTS: Minimum and ideal factor level increased with higher risk PA, whether or not joint morbidity was present, as did the experts' uncertainty in their estimates (ie the range between lowest and highest estimates for minimum and ideal levels). Mean minimum levels ranged from 4% to 48% for low to high risk for people without joint morbidity, and from 7% to 47% for those with joint morbidity. For ideal factor levels, corresponding figures were 9%-52% and 12%-64%, respectively. CONCLUSION: To support a patient-centric outcome, expert opinion indicates that the clinical norm of 0.01 IU/mL (1%) trough level is insufficient. It is anticipated that introducing a more targeted approach to meet the needs of patients who are increasingly physically active will benefit patients further in addition to recent treatment advances.

[Diagnostics and treatment of cervical spine trauma in pediatric patients : Recommendations from the Pediatric Spinal Trauma Group]. / Diagnostik und Therapie von Verletzungen der Halswirbelsäule im Kindesalter : Empfehlungen der AG Wirbelsäulentrauma im Kindesalter.

BACKGROUND: Severe cervical spine injuries in children under the age of 17 years are rare. Recommendations or even guidelines for the diagnostics and treatment of such injuries in children are currently not available. OBJECTIVE: The aim of the study was to formulate recommendations for diagnostics and treatment of injuries of the cervical spine in pediatric patients. MATERIAL AND METHODS: First, a search of primary and secondary literature on the topic complex of diagnostics and treatment of cervical spine injuries in children was carried out. An appropriate internal literature database was defined and maintained. Second, within the framework of 9 meetings from April 2017 to December 2019 the members of the Pediatric Spinal Trauma Group of the Spine Section of the German Society for Orthopaedics and Trauma (DGOU) systematically formulated recommendations for the diagnostics and treatment of injuries of the cervical spine in pediatric patients by a consensus process. RESULTS: Recommendation for the diagnostics and treatment for injuries of the cervical spine could be formulated for three age groups (age group I: 0-6 years; age group II: 7-9 years; age group III: 10-16 years). The diagnostic and therapeutic principles known from adult patients suffering from injuries to the cervical spine cannot be easily transferred to pediatric patients. CONCLUSION: Injuries to the pediatric spine are rare and should be treated in specialized spine centers. Pediatric patients with a stable cardiopulmonary status should undergo magnetic resonance imaging (MRI) if a spinal trauma is suspected. Classification systems and therapeutic recommendations for injuries to the cervical spine known from adult patients could also be used for adolescent patients. This is not possible for children under the age of 10 years. Only few classification systems exist for this age group. Basic principles of the treatment of spinal trauma in children is the restoration of spinal stability and correct anatomical relationships as well as the protection of all neural structures.

[Diagnostics and treatment of thoracic and lumbar spine trauma in pediatric patients : Recommendations from the Pediatric Spinal Trauma Group]. / Diagnostik und Therapie von Verletzungen der Brust- und Lendenwirbelsäule im Kindesalter : Empfehlungen der AG Wirbelsäulentrauma im Kindesalter.

BACKGROUND: Spinal injuries in pediatric patients are overall very rare. Current reference studies including large patient numbers that enable the formulation of evidence-based recommendations on diagnostics and treatment of these injuries do not exist. OBJECTIVE: The aim of the current study was to formulate recommendations on the diagnostics and treatment for injuries of the thoracic and lumbar spine in pediatric patients. MATERIAL AND METHODS: Firstly, a search for primary and secondary literature on the topic of diagnostics and treatment of spinal injuries in children was carried out. From this, a literature database was established and maintained. Secondly, within the framework of 9 meetings in the time period from April 2017 to December 2019 the members of the Pediatric Spinal Trauma Group of the Spine Section of the German Society for Orthopaedics and Trauma (DGOU) documented recommendations on diagnostics and treatment of injuries of the thoracic and lumbar spine in pediatric patients by a consensus process. RESULTS: Recommendations on the diagnostics and treatment of injuries of the thoracic and lumbar spine could be given for 3 age groups (age group I: 0-6 years; age group II: 7-9 years; age group III: 10-16 years). Diagnostic and therapeutic principles known from adult patients suffering from injuries to the thoracic or lumbar spine cannot easily be transferred to pediatric patients. CONCLUSION: Spinal injuries in childhood are rare and should be treated in specialized spine centers. Pediatric patients with a stable cardiopulmonary status should undergo magnetic resonance imaging (MRI) if a spinal trauma is suspected. The basic principles of the treatment of spinal trauma in children is the restoration of spinal stability and correct anatomical parameters as well as the protection of all neural structures. The potential for correction and regeneration of the individual spinal sections depending on the age of the patient must be considered for deciding between operative vs. conservative treatment. Whenever operative treatment is needed, it should be performed by minimally invasive techniques as a sole instrumentation without spondylodesis. An early removal of the screw-rod-system should be performed.

Decision-making around resuscitation of extremely preterm infants in the Philippines: A consensus guideline.

While the vast majority of preterm births globally occur in low- and middle-income countries, existing published guidelines relating to the decision-making and resuscitation of extremely preterm infants (EPIs) largely focus on high-income countries. In 2018-2019, a working group of the Philippine Society of Newborn Medicine aimed to develop the first national guideline relating to the care of EPIs. The working group reviewed data on the outcomes of EPIs in the Philippines, surveyed paediatricians and neonatologists in the Philippines about current practice and held a consensus workshop. This paper describes the guideline development process and presents a summary of the guidelines. The national guidelines endorse consistency in decision-making. Health professionals should take into consideration the views and wishes of the infant's parents and the availability of resources to treat the newborn infant. Active management would be appropriate to provide for potentially viable preterm infants at moderate to high risk of poor outcomes, where parents have expressed their wish for this management (and where there are resources available to provide this treatment). For such infants, where parents have expressed their wish to withhold active management, palliative management would also be appropriate to provide. The guideline endorses a grey zone for neonatal resuscitation from approximately 24 to 28 weeks' gestation in the Philippines, reflecting the context for resuscitation in low- and middle-income countries. Disparities in resource availability are themselves an ethical concern for neonatologists and should be a stimulus for advocacy and improvements in health-care delivery.

Meta-analysis and multidisciplinary consensus statement: exome sequencing is a first-tier clinical diagnostic test for individuals with neurodevelopmental disorders.

PURPOSE: For neurodevelopmental disorders (NDDs), etiological evaluation can be a diagnostic odyssey involving numerous genetic tests, underscoring the need to develop a streamlined algorithm maximizing molecular diagnostic yield for this clinical indication. Our objective was to compare the yield of exome sequencing (ES) with that of chromosomal microarray (CMA), the current first-tier test for NDDs. METHODS: We performed a PubMed scoping review and meta-analysis investigating the diagnostic yield of ES for NDDs as the basis of a consensus development conference. We defined NDD as global developmental delay, intellectual disability, and/or autism spectrum disorder. The consensus development conference included input from genetics professionals, pediatric neurologists, and developmental behavioral pediatricians. RESULTS: After applying strict inclusion/exclusion criteria, we identified 30 articles with data on molecular diagnostic yield in individuals with isolated NDD, or NDD plus associated conditions (such as Rett-like features). Yield of ES was 36% overall, 31% for isolated NDD, and 53% for the NDD plus associated conditions. ES yield for NDDs is markedly greater than previous studies of CMA (15-20%). CONCLUSION: Our review demonstrates that ES consistently outperforms CMA for evaluation of unexplained NDDs. We propose a diagnostic algorithm placing ES at the beginning of the evaluation of unexplained NDDs.

Methodological evaluation of reviews that support recommendations from three consensus workshops in periodontology.

OBJECTIVE: This study aimed to evaluate comprehensiveness and reproducibility of reviews that support consensus guidelines in periodontology. METHODS: We included the reviews that support consensus guidelines from three workshops in periodontology, which were overseen by likely the two most important organisations in the field: the European Federation of Periodontology and the American Academy of Periodontology. We independently evaluated the comprehensiveness of literature searches by determining whether authors had searched reference lists, journals, registries and grey literature and whether the searches were limited to only one or a few languages. We evaluated whether review authors reported the eligibility criteria, the search strategies, and the list of included/excluded articles. We tested whether the search and selection of articles in one major database was reproducible. RESULTS: Twenty-nine reviews were evaluated. Two (7%) reviews reported grey literature searches, and more than two-thirds of the reviews did not report hand-searching. Almost half of the reviews did not report whether there was language restriction for the literature searches. Two-thirds of the reviews reported the use of keywords only (without Boolean operators). One-fourth of the reviews reported the presence of a list of excluded articles after the full-text assessment. None of the reviews reported a detailed list of excluded articles after screening of titles/abstracts. None of the reviews reported enough information to allow reproduction of the findings of the PubMed search. CONCLUSIONS: There is room to improve the reporting of the methodologies that are used in reviews that support periodontology consensus guidelines, although heterogeneity in reporting was found across all the reviews.

Evaluating Public Engagement for a Consensus Development Conference.

BACKGROUND: Effectively engaging Canadians to help improve the quality and delivery of healthcare to dying Canadians is a priority for healthcare administrators and policy makers. This report shares our evaluation and learnings, applying a series of strategies to encourage policy formation. The Palliative Care Matters consensus development conference held in Ottawa on November 7-9, 2016 brought together members of the public, stakeholders, scientific experts, and a lay panel of interested Canadians to examine Canadian public opinions on palliative care and question experts on how palliative care could be enhanced. OBJECTIVE: This report shares our evaluation and learnings applying a series of strategies to encourage policy formation. METHODS: An evaluation was conducted to measure the short, intermediate, and identify long-term outcomes of the conference. The overall performance of the conference for public engagement from November 2016 to mid June 2017 is shared. RESULTS AND CONCLUSION: The outcome of the conference was positive. It was attended and watched online by over 400 participants, received national print, radio and television coverage, and generated high exposure and engagement on social media. Survey results showed that the majority of steering committee, expert, and lay panel members felt a high level of engagement and agreed that the engagement process was successful. Evaluation will be conducted on an ongoing basis for at least another year.

Rapid Review and Synthesis of the Palliative Care Matters Scientific Evidence.

BACKGROUND: This article details the methods used for a rapid literature review. OBJECTIVE: The eight scientific articles contained in this Palliative Care Matters supplemental issue synthesize and interpret evidence from the rapid review process outlined in this study. METHODS: The methods of the rapid review were adopted from the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA-P) statement of PRISMA. RESULTS: The current article contains the literature search strategies for both gray and academic literature, resource eligibility criteria for inclusion and exclusion, and tables and figures to outline the literature search process, and delimit the number of resource items captured at each step in the process.

Consensus Development Conference: Promoting Access to Quality Palliative Care in Canada.

OBJECTIVE: This article outlines the development and implementation of a consensus development conference (CDC). BACKGROUND: As a rapid method for data synthesis, a CDC affords a timely and methodic means of evaluating data to effect change in healthcare policy. METHODS: The CDC methodology was adopted for the Palliative Care Matters initiative due to its engagement with the public, scientific community, and palliative care stakeholders. RESULTS: It requires the involvement of seven key groups/roles to successfully effect change: a manager, steering committee, scientific expert panel, public lay panel, a lay-panel facilitator, a public audience, and the media for dissemination. DISCUSSION: This article also details the background information and guiding principles on which the Palliative Care Matters initiative was formed. A Canadian Reference Working Group was formed to develop the Palliative Care Matters guiding principles into six scientific questions. The scientific articles in this supplemental issue each present evidence and expert recommendations that speak to one of the Palliative Care Matters scientific questions.