Dental patients as partners in promoting quality and safety: a qualitative exploratory study.

OBJECTIVE: Active patient involvement in promoting quality and safety is a priority for healthcare. We investigated how dental patients perceive their role as partners in promoting quality and safety across various dental care settings. METHODS: Focus group sessions were conducted at three dental practice settings: an academic dental center, a community dental clinic, and a large group private practice, from October 2018-July 2019. Patients were recruited through flyers or word-of-mouth invitations. Each session lasted 2.5 h and patients completed a demographic and informational survey at the beginning. Audio recordings were transcribed, and a hybrid thematic analysis was performed by two independent reviewers using Dedoose. RESULTS: Forty-seven participants took part in eight focus group sessions; 70.2% were females and 38.3% were aged 45-64 years. Results were organized into three major themes: patients' overall perception of dental quality and safety; patients' reaction to an adverse dental event; and patients' role in promoting quality and safety. Dental patients were willing to participate in promoting quality and safety by careful provider selection, shared decision-making, self-advocacy, and providing post-treatment provider evaluations. Their reactions towards adverse dental events varied based on the type of dental practice setting. Some factors that influenced a patient's overall perception of dental quality and safety included provider credentials, communication skills, cleanliness, and durability of dental treatment. CONCLUSION: The type of dental practice setting affected patients' desire to work as partners in promoting dental quality and safety. Although patients acknowledged having an important role to play in their care, their willingness to participate depended on their relationship with their provider and their perception of provider receptivity to patient feedback.

Shifts in the coral microbiome in response to in situ experimental deoxygenation.

IMPORTANCE: Marine hypoxia is a threat for corals but has remained understudied in tropical regions where coral reefs are abundant. Though microbial symbioses can alleviate the effects of ecological stress, we do not yet understand the taxonomic or functional response of the coral microbiome to hypoxia. In this study, we experimentally lowered oxygen levels around Siderastrea siderea and Agaricia lamarcki colonies in situ to observe changes in the coral microbiome in response to deoxygenation. Our results show that hypoxia triggers a stochastic change of the microbiome overall, with some bacterial families changing deterministically after just 48 hours of exposure. These families represent an increase in anaerobic and opportunistic taxa in the microbiomes of both coral species. Thus, marine deoxygenation destabilizes the coral microbiome and increases bacterial opportunism. This work provides novel and fundamental knowledge of the microbial response in coral during hypoxia and may provide insight into holobiont function during stress.

Introducing the participant-generated experience and satisfaction (PaGES) index: a novel, longitudinal mixed-methods evaluation tool.

BACKGROUND: Patient-Reported Outcomes or Experience Measures (PROMS / PREMS) are routinely used in clinical studies to assess participants' views and experiences of trial interventions and related quality of life. Purely quantitative approaches lack the necessary detail and flexibility to understand the real-world impact of study interventions on participants, according to their own priorities. Conversely, purely qualitative assessments are time consuming and usually restricted to a small, possibly unrepresentative, sub-sample. This paper, which reports a pilot study within a randomised controlled trial of induction of labour, reports the feasibility, and acceptability of the Participant-Generated Experience and Satisfaction (PaGES) Index, a new mixed qualitative / quantitative PREM tool. METHODS: The single-sheet PaGES Index was completed by hypertensive pregnant women in two hospitals in Nagpur, India before and after taking part in the 'Misoprostol or Oxytocin for Labour Induction' (MOLI) randomised controlled trial. Participants recorded aspects of the impending birth they considered most important, and then ranked them. After the birth, participants completed the PaGES Index again, this time also scoring their satisfaction with each item. Forms were completed on paper in the local language or in English, supported by Research Assistants. Following translation (when needed), responses were uploaded to a REDCap database, coded in Excel and analysed thematically. A formal qualitative evaluation (qMOLI) was also conducted to obtain stakeholder perspectives of the PaGES Index and the wider trial. Semi-structured interviews were conducted with participants, and focus groups with researchers and clinicians. Data were managed using NVivo 12 software and analysed using the framework approach. RESULTS: Participants and researchers found the PaGES Index easy to complete and administer; mothers valued the opportunity to speak about their experience. Qualitative analysis of the initial 68 PaGES Index responses identified areas of commonality and difference among participants and also when comparing antenatal and postnatal responses. Theme citations and associated comments scores were fairly stable before and after the birth. The qMOLI phase, comprising 53 one-to-one interviews with participants and eight focus groups involving 83 researchers and clinicians, provided support that the PaGES Index was an acceptable and even helpful means of capturing participant perspectives. CONCLUSIONS: Subjective participant experiences are an important aspect of clinical trials. The PaGES Index was found to be a feasible and acceptable measure that unites qualitative research's explanatory power with the comparative power of quantitative designs. It also offers the opportunity to conduct a before-and-after evaluation, allowing researchers to examine the expectations and actual experiences of all clinical trial participants, not just a small sub-sample. This study also shows that, with appropriate research assistant input, the PaGES Index can be used in different languages by participants with varying literacy levels. TRIAL REGISTRATION: Clinical Trials.gov (21/11/2018) (NCT03749902).

A Question-and-Answer System to Extract Data From Free-Text Oncological Pathology Reports (CancerBERT Network): Development Study.

BACKGROUND: Information in pathology reports is critical for cancer care. Natural language processing (NLP) systems used to extract information from pathology reports are often narrow in scope or require extensive tuning. Consequently, there is growing interest in automated deep learning approaches. A powerful new NLP algorithm, bidirectional encoder representations from transformers (BERT), was published in late 2018. BERT set new performance standards on tasks as diverse as question answering, named entity recognition, speech recognition, and more. OBJECTIVE: The aim of this study is to develop a BERT-based system to automatically extract detailed tumor site and histology information from free-text oncological pathology reports. METHODS: We pursued three specific aims: extract accurate tumor site and histology descriptions from free-text pathology reports, accommodate the diverse terminology used to indicate the same pathology, and provide accurate standardized tumor site and histology codes for use by downstream applications. We first trained a base language model to comprehend the technical language in pathology reports. This involved unsupervised learning on a training corpus of 275,605 electronic pathology reports from 164,531 unique patients that included 121 million words. Next, we trained a question-and-answer (Q&A) model that connects a Q&A layer to the base pathology language model to answer pathology questions. Our Q&A system was designed to search for the answers to two predefined questions in each pathology report: What organ contains the tumor? and What is the kind of tumor or carcinoma? This involved supervised training on 8197 pathology reports, each with ground truth answers to these 2 questions determined by certified tumor registrars. The data set included 214 tumor sites and 193 histologies. The tumor site and histology phrases extracted by the Q&A model were used to predict International Classification of Diseases for Oncology, Third Edition (ICD-O-3), site and histology codes. This involved fine-tuning two additional BERT models: one to predict site codes and another to predict histology codes. Our final system includes a network of 3 BERT-based models. We call this CancerBERT network (caBERTnet). We evaluated caBERTnet using a sequestered test data set of 2050 pathology reports with ground truth answers determined by certified tumor registrars. RESULTS: caBERTnet's accuracies for predicting group-level site and histology codes were 93.53% (1895/2026) and 97.6% (1993/2042), respectively. The top 5 accuracies for predicting fine-grained ICD-O-3 site and histology codes with 5 or more samples each in the training data set were 92.95% (1794/1930) and 96.01% (1853/1930), respectively. CONCLUSIONS: We have developed an NLP system that outperforms existing algorithms at predicting ICD-O-3 codes across an extensive range of tumor sites and histologies. Our new system could help reduce treatment delays, increase enrollment in clinical trials of new therapies, and improve patient outcomes.

Cytoplasmic convection currents and intracellular temperature gradients.

Intracellular thermometry has recently demonstrated temperatures in the nucleus, mitochondria, and centrosome to be significantly higher than those of the cytoplasm and cell membrane. This local thermogenesis and the resulting temperature gradient could facilitate the development of persistent, self-organizing convection currents in the cytoplasm of large eukaryotes. Using 3-dimensional computational simulations of intracellular fluid motion, we quantify the convective velocities that could result from the temperature differences observed experimentally. Based on these velocities, we identify the conditions necessary for this temperature-driven bulk flow to dominate over random thermal diffusive motion at the scale of a single eukaryotic cell. With temperature gradients of the order 1°C and diffusion coefficients comparable to those described in the literature, Péclet numbers ≥ 1 are feasible and permit comparable or greater effects of convection than diffusion in determining intracellular mass flux. In addition to the temperature gradient, the resulting flow patterns would also depend on the spatial localization of the heat source, the shape of the cell membrane, and the complex intracellular structure including the cytoskeleton. While this intracellular convection would be highly context-dependent, in certain settings, convective motion could provide a previously unrecognized mechanism for directed, bulk transport within eukaryotic cells.

Understanding the implementation and adoption of a technological intervention to improve medication safety in primary care: a realist evaluation.

BACKGROUND: Monitoring for potentially hazardous prescribing is increasingly important to improve medication safety. Healthcare information technology can be used to achieve this aim, for example by providing access to prescribing data through surveillance of patients' electronic health records. The aim of our study was to examine the implementation and adoption of an electronic medicines optimisation system that was intended to facilitate clinical audit in primary care by identifying patients at risk of an adverse drug event. We adopted a sociotechnical approach that focuses on how complex social, organisational and institutional factors may impact upon the use of technology within work settings. METHODS: We undertook a qualitative realist evaluation of the use of an electronic medicines optimisation system in one Clinical Commissioning Group in England. Five semi-structured interviews, four focus groups and one observation were conducted with a range of stakeholders. Consistent with a realist evaluation methodology, the analysis focused on exploring the links between context, mechanism and outcome to explain the ways the intervention might work, for whom and in what circumstances. RESULTS: Using the electronic medicines optimisation system could lead to a number of improved patient safety outcomes including pre-emptively reviewing patients at risk of adverse drug events. The effective use of the system depended upon engagement with the system, the flow of information between different health professionals centrally placed at the Clinical Commissioning Group and those locally placed at individual general practices, and upon variably adapting work practices to facilitate the use of the system. The use of the system was undermined by perceptions of ownership, lack of access, and lack of knowledge and awareness. CONCLUSIONS: The use of an electronic medicines optimisation system may improve medication safety in primary care settings by identifying those patients at risk of an adverse drug event. To fully realise the potential benefits for medication safety there needs to be better utilisation across primary care and with a wider range of stakeholders. Engaging with all potential stakeholders and users prior to implementation of such systems might allay perceptions that the system is owned centrally and increase knowledge of the potential benefits.

An assessment of the impact of herb-drug combinations used by cancer patients.

BACKGROUND: Herb/Dietary Supplements (HDS) are the most popular Complementary and Alternative Medicine (CAM) modality used by cancer patients and the only type which involves the ingestion of substances which may interfere with the efficacy and safety of conventional medicines. This study aimed to assess the level of use of HDS in cancer patients undergoing treatment in the UK, and their perceptions of their effects, using 127 case histories of patients who were taking HDS. Previous studies have evaluated the risks of interactions between HDS and conventional drugs on the basis on numbers of patient using HDSs, so our study aimed to further this exploration by examining the actual drug combinations taken by individual patients and their potential safety. METHOD: Three hundred seventy-five cancer patients attending oncology departments and centres of palliative care at the Oxford University Hospitals Trust (OUH), Duchess of Kent House, Sobell House, and Nettlebed Hospice participated in a self-administered questionnaire survey about their HDS use with their prescribed medicines. The classification system of Stockley's Herbal Medicine's Interactions was adopted to assess the potential risk of herb-drug interactions for these patients. RESULTS: 127/375 (34 %; 95 % CI 29, 39) consumed HDS, amounting to 101 different products. Most combinations were assessed as 'no interaction', 22 combinations were categorised as 'doubt about outcomes of use', 6 combinations as 'Potentially hazardous outcome', one combination as an interaction with 'Significant hazard', and one combination as an interaction of "Life-threatening outcome". Most patients did not report any adverse events. CONCLUSION: Most of the patients sampled were not exposed to any significant risk of harm from interactions with conventional medicines, but it is not possible as yet to conclude that risks in general are over-estimated. The incidence of HDS use was also less than anticipated, and significantly less than reported in other areas, illustrating the problems when extrapolating results from one region (the UK), in one setting (NHS oncology) in where patterns of supplement use may be very different to those elsewhere.

Cancer patients at risk of herb/food supplement-drug interactions: a systematic review.

Herbal medicines and dietary supplements are commonly taken by patients with cancer, leading to concern over interactions with conventional medicines. A literature search was carried out to identify published studies exploring supplement use by patients with a cancer diagnosis. A total of 818 articles were retrieved using the key words, but only 41 are judged to be relevant based on title. Following the review of the abstracts, ten papers were considered to be potentially relevant, but of these, only two met the selection criteria, and three additional papers were identified from published reviews. Of 806 patients surveyed, 433 (53.7%) were reported to be taking combinations of supplements and drugs, and 167 incidents of risk were identified, affecting 60 patients (13.9%). The interactions identified were mainly theoretical and not supported by clinical data. No studies reported any adverse events associated with these combinations; most did not record the actual drug combinations taken, and the risk potential of some supplements appears to have been over-estimated. More effort should be made to investigate supplement use in this vulnerable patient group, based on sound evidence of plausible interaction, not only to avoid harm but also to provide reassurance where appropriate if the patient wishes to take a particular supplement.

Implementing debriefing after cardiac arrest: benefits and challenges.

Healthcare professionals, including nurses, will be involved in the care and management of patients in cardiac arrest. This highly stressful and demanding situation can lead to breakdowns in communication, difficulty in decision-making and emotional distress for members of the healthcare team. Debriefing is a recommended tool that team members can use to acknowledge what went well, what could be improved and areas for learning or development. However, debriefing is often not prioritised due to pressures in clinical practice. This article discusses the benefits of debriefing and outlines some of the approaches and tools that may be used. The author argues that by recognising the importance of debriefing after cardiac arrests in the hospital setting and committing to best practices, nurses can be better prepared for the challenges of resuscitation and improve patient outcomes.

A School Nurse's Experience With Supraventricular Tachycardia.

Students visit school health offices with a variety of complaints, and while some may be minor, others may be more pressing. The challenge for the school nurse is being able to differentiate between the two. This article features a case study of a fourth-grade elementary student who presented to the school nurse with a sudden onset of supraventricular tachycardia (SVT), a rapid cardiac arrhythmia that originates above the ventricles in the heart. The student's complaint was a "racing heart," and it was her first time experiencing a cardiac episode. It was also the school nurse's first time encountering this chief complaint. The article will describe the student's presentation to the health office, will discuss the school nurse's assessments along with SVT management techniques, and will conclude with the student's outcome and a sample individualized healthcare plan.

Patients' Experiences of Dental Diagnostic Failures: A Qualitative Study Using Social Media.

OBJECTIVE: Despite the many advancements made in patient safety over the past decade, combating diagnostic errors (DEs) remains a crucial, yet understudied initiative toward improvement. This study sought to understand the perception of dental patients who have experienced a dental diagnostic failure (DDF) and to identify patient-centered strategies to help reduce future occurrences of DDF. METHODS: Through social media recruitment, we conducted a screening survey, initial assessment, and 67 individual patient interviews to capture the effects of misdiagnosis, missed diagnosis, or delayed diagnosis on patient lives. Audio recordings of patient interviews were transcribed, and a hybrid thematic analysis approach was used to capture details about 4 main domains of interest: the patient's DDF experience, contributing factors, impact, and strategies to mitigate future occurrences. RESULTS: Dental patients endured prolonged suffering, disease progression, unnecessary treatments, and the development of new symptoms as a result of experiencing DE. Poor provider communication, inadequate time with provider, and lack of patient self-advocacy and health literacy were among the top attributes patients believed contributed to the development of a DE. Patients suggested that improvements in provider chairside manners, more detailed patient diagnostic workups, and improving personal self-advocacy; along with enhanced reporting systems, could help mitigate future DE. CONCLUSIONS: This study demonstrates the valuable insight the patient perspective provides in understanding DEs, therefore aiding the development of strategies to help reduce the occurrences of future DDF events. Given the challenges patients expressed, there is a significant need to create an accessible reporting system that fosters constructive clinician learning.

Immunologic Outcomes in Cross-Sex Solid Organ Transplants: A Systematic Review and Meta-Analysis to Inform Vascularized Composite Allotransplantation.

BACKGROUND: Of nearly 90 hand and 50 face transplant recipients, only five have received a cross-sex vascularized composite allotransplantation (CS-VCA). CS-VCA has the potential to expand the donor pool and has been proven anatomically feasible and ethically acceptable in previous studies. However, there is a lack of immunologic data. This study evaluated the immunologic feasibility of CS-VCA through analysis of the solid organ transplant literature, given the paucity of CS-VCA data. The authors hypothesize that rates of acute rejection (AR) and graft survival (GS) in CS versus same-sex (SS) solid organ transplantation are similar. METHODS: A systematic review and meta-analysis were performed. Studies comparing GS or AR episodes in CS and SS adult kidney (KT) and liver transplant (LT) populations were included. Odds ratios were calculated for overall GS and AR for all SS and CS transplant combinations [male-to-female (MTF), female-to-male, and overall]. RESULTS: A total of 693 articles were initially identified with 25 included in the meta-analysis. No significant difference in GS was noted between SS-KT versus CS-KT [OR, 1.04 (95% CI, 1.00 to 1.07); P = 0.07), SS-KT versus MTF-KT [OR, 0.97 (95% CI, 0.90 to 1.04); P = 0.41), and SS-LT versus MTF-LT [OR, 0.95 (95% CI, 0.91 to 1.00); P = 0.05). No significant difference in AR was noted between SS-KT versus MTF-KT [OR, 0.99 (95% CI, 0.96 to 1.02); P = 0.57), SS-LT versus CS-LT [OR, 0.78 (95% CI, 0.53 to 1.16); P = 0.22], or SS-LT versus female-to-male LT [OR, 1.03 (95% CI, 0.95 to 1.12); P = 0.47]. For the remaining pairings, GS was significantly increased and AR was significantly decreased in the SS transplants. CONCLUSIONS: Published data suggest immunologic feasibility of CS-KT and CS-LT with the potential for generalization to the VCA population. CLINICAL RELEVANCE STATEMENT: In theory, CS-VCA could expand the potential donor pool, ultimately leading to decreased wait times for recipients and improve the likelihood of establishing a immunologically favorable donor-recipient match.

Refining mutanome-based individualised immunotherapy of melanoma using artificial intelligence.

Using the particular nature of melanoma mutanomes to develop medicines that activate the immune system against specific mutations is a game changer in immunotherapy individualisation. It offers a viable solution to the recent rise in resistance to accessible immunotherapy alternatives, with some patients demonstrating innate resistance to these drugs despite past sensitisation to these agents. However, various obstacles stand in the way of this method, most notably the practicality of sequencing each patient's mutanome, selecting immunotherapy targets, and manufacturing specific medications on a large scale. With the robustness and advancement in research techniques, artificial intelligence (AI) is a potential tool that can help refine the mutanome-based immunotherapy for melanoma. Mutanome-based techniques are being employed in the development of immune-stimulating vaccines, improving current options such as adoptive cell treatment, and simplifying immunotherapy responses. Although the use of AI in these approaches is limited by data paucity, cost implications, flaws in AI inference capabilities, and the incapacity of AI to apply data to a broad population, its potential for improving immunotherapy is limitless. Thus, in-depth research on how AI might help the individualisation of immunotherapy utilising knowledge of mutanomes is critical, and this should be at the forefront of melanoma management.

A pharmacist-led information technology intervention for medication errors (PINCER): a multicentre, cluster randomised, controlled trial and cost-effectiveness analysis.

BACKGROUND: Medication errors are common in primary care and are associated with considerable risk of patient harm. We tested whether a pharmacist-led, information technology-based intervention was more effective than simple feedback in reducing the number of patients at risk of measures related to hazardous prescribing and inadequate blood-test monitoring of medicines 6 months after the intervention. METHODS: In this pragmatic, cluster randomised trial general practices in the UK were stratified by research site and list size, and randomly assigned by a web-based randomisation service in block sizes of two or four to one of two groups. The practices were allocated to either computer-generated simple feedback for at-risk patients (control) or a pharmacist-led information technology intervention (PINCER), composed of feedback, educational outreach, and dedicated support. The allocation was masked to researchers and statisticians involved in processing and analysing the data. The allocation was not masked to general practices, pharmacists, patients, or researchers who visited practices to extract data. [corrected]. Primary outcomes were the proportions of patients at 6 months after the intervention who had had any of three clinically important errors: non-selective non-steroidal anti-inflammatory drugs (NSAIDs) prescribed to those with a history of peptic ulcer without co-prescription of a proton-pump inhibitor; ß blockers prescribed to those with a history of asthma; long-term prescription of angiotensin converting enzyme (ACE) inhibitor or loop diuretics to those 75 years or older without assessment of urea and electrolytes in the preceding 15 months. The cost per error avoided was estimated by incremental cost-effectiveness analysis. This study is registered with Controlled-Trials.com, number ISRCTN21785299. FINDINGS: 72 general practices with a combined list size of 480,942 patients were randomised. At 6 months' follow-up, patients in the PINCER group were significantly less likely to have been prescribed a non-selective NSAID if they had a history of peptic ulcer without gastroprotection (OR 0·58, 95% CI 0·38-0·89); a ß blocker if they had asthma (0·73, 0·58-0·91); or an ACE inhibitor or loop diuretic without appropriate monitoring (0·51, 0·34-0·78). PINCER has a 95% probability of being cost effective if the decision-maker's ceiling willingness to pay reaches £75 per error avoided at 6 months. INTERPRETATION: The PINCER intervention is an effective method for reducing a range of medication errors in general practices with computerised clinical records. FUNDING: Patient Safety Research Portfolio, Department of Health, England.

Developing consensus on hospital prescribing indicators of potential harms amenable to decision support.

AIMS: To develop a list of prescribing indicators specific for the hospital setting that would facilitate the prospective collection of high-severity and/or high-frequency prescribing errors, which are also amenable to electronic clinical decision support. METHODS: A two-stage consensus technique (electronic Delphi) was carried out with 20 experts across England. Participants were asked to score prescribing errors using a five-point Likert scale for their likelihood of occurrence and the severity of the most likely outcome. These were combined to produce risk scores, from which median scores were calculated for each indicator across the participants in the study. The degree of consensus between the participants was defined as the proportion that gave a risk score in the same category as the median. Indicators were included if a consensus of 80% or more was achieved. RESULTS: A total of 80 prescribing errors were identified by consensus as being high or extreme risk. The most common drug classes named within the indicators were antibiotics (n = 13), antidepressants (n = 8), nonsteroidal anti-inflammatory drugs (n = 6) and opioid analgesics (n = 6). The most frequent error type identified as high or extreme risk were those classified as clinical contraindications (n = 29 of 80). CONCLUSIONS: Eighty high-risk prescribing errors in the hospital setting have been identified by an expert panel. These indicators can serve as a standardized, validated tool for the collection of prescribing data in both paper-based and electronic prescribing processes. This can assess the impact of safety improvement initiatives, such as the implementation of electronic clinical decision support.

Educating the future public health workforce: do schools of public health teach students about the private sector?

CONTEXT: Recent surveys indicate that approximately 40% of graduates from schools of public health are employed within the private sector or have an employer charged with regulating the private sector. These data suggest that schools of public health should provide curricular opportunities for their students--the future public health workforce--to learn about the relationship between the private sector and the public's health. OBJECTIVE: To identify opportunities for graduate students in schools of public health to select course work that educates them about the relationship between the private sector and public health. DESIGN: We systematically identified and analyzed data gathered from publicly available course titles and descriptions on the Web sites of accredited schools of public health. SETTING: Data were collected in the United States. PARTICIPANTS: The sample consisted of accredited schools of public health. MAIN OUTCOME MEASURES: Descriptions of the number and types of courses that schools of public health offer about the private sector and identification of how course descriptions frame the private sector relative to public health. RESULTS: We identified 104 unique courses with content about the private sector's relationship to public health. More than 75% of accredited schools of public health offered at least 1 such course. Nearly 25% of identified courses focused exclusively on the health insurance industry. Qualitative analysis of the data revealed 5 frames used to describe the private sector, including its role as a stakeholder in the policy process. CONCLUSIONS: Schools of public health face a curricular gap, with relatively few course offerings that teach students about the relationship between the private sector and the public's health. By developing new courses or revising existing ones, schools of public health can expose the future public health workforce to the varied ways public health professionals interact with the private sector, and potentially influence students' career paths.

Heterogeneity of Autism Characteristics in Genetic Syndromes: Key Considerations for Assessment and Support.

Purpose of Review: Elevated prevalence of autism characteristics is reported in genetic syndromes associated with intellectual disability. This review summarises recent evidence on the behavioural heterogeneity of autism in the following syndromes: Fragile X, Cornelia de Lange, Williams, Prader-Willi, Angelman, Down, Smith-Magenis, and tuberous sclerosis complex. Key considerations for assessment and support are discussed. Recent Findings: The profile and developmental trajectory of autism-related behaviour in these syndromes indicate some degree of syndrome specificity which may interact with broader behavioural phenotypes (e.g. hypersociability), intellectual disability, and mental health (e.g. anxiety). Genetic subtype and co-occurring epilepsy within syndromes contribute to increased significance of autism characteristics. Autism-related strengths and challenges are likely to be overlooked or misunderstood using existing screening/diagnostic tools and criteria, which lack sensitivity and specificity within these populations. Summary: Autism characteristics are highly heterogeneous across genetic syndromes and often distinguishable from non-syndromic autism. Autism diagnostic assessment practices in this population should be tailored to specific syndromes. Service provisions must begin to prioritise needs-led support.

Assessing the Contribution of Scanned Outside Documents to the Completeness of Real-World Data Abstraction.

PURPOSE: Electronic health record (EHR) data are widely used in precision medicine, quality improvement, disease surveillance, and population health management. However, a significant amount of EHR data are stored in unstructured formats including scanned documents external to the treatment facility presenting an informatics challenge for secondary use. Studies are needed to characterize the clinical information uniquely available in scanned outside documents (SODs) to understand to what extent the availability of such information affects the use of these real-world data for cancer research. MATERIALS AND METHODS: Two independent EHR data abstractions capturing 30 variables commonly used in oncology research were conducted for 125 patients treated for advanced non-small-cell lung cancer at a comprehensive cancer center, with and without consideration of SODs. Completeness and concordance were compared between the two abstractions, overall, and by patient groups and variable types. RESULTS: The overall completeness of the data with SODs was 77.6% as compared with 54.3% for the abstraction without SODs. The differences in completeness were driven by data related to biomarker tests, which were more likely to be uniquely available in SODs. Such data were prone to missingness among patients who were diagnosed externally. CONCLUSION: There were no major differences in completeness between the two abstractions by demographics, diagnosis, disease progression, performance status, or oral therapy use. However, biomarker data were more likely to be uniquely contained in the SODs. Our findings may help cancer centers prioritize the types of SOD data being abstracted for research or other secondary purposes.