Narrative Reports Research Articles

Advances in the use of dried blood spots on filter paper to monitor kidney disease

Patients with kidney disease require frequent blood tests to monitor their kidney function, which is particularly difficult for young children and the elderly. For these people, the standard method is to evaluate serum creatinine or cystatin C or drug levels through venous sampling, but more recently, evaluation using dried blood spots has been used. This narrative review reports information from the literature on the use of dried blood spots to quantify the main markers used to detect kidney diseases. The ScienceDirect and PubMed databases were searched using the keywords: “dried blood on filter paper,” “markers of renal function,” “renal function,” “creatinine,” “cystatin C,” “urea,” “iohexol,” and “iotalamate.” Studies using animal samples were excluded, and only relevant articles in English or Spanish were considered. Creatinine was the most assessed biomarker in studies using dried blood spots to monitor kidney function, showing good performance in samples whose hematocrit levels were within normal reference values. According to the included studies, dried blood spots are a practical monitoring alternative for kidney disease. Validation parameters, such as sample and card type, volume, storage, internal patterns, and the effects of hematocrit are crucial to improving the reliability of these results.

Writing effective narrative valuation reports: the storytelling imperative

ABSTRACT The modern valuation profession faces a significant challenge in providing high-quality narrative reports that are both effective and customisable. Clear communication of the valuation story is essential, yet there is a recognised gap in understanding how to implement storytelling successfully within narrative valuation reports. This study aims to bridge this gap using semi-structured, in-depth interviews with 19 New Zealand valuers to explore the essential principles of crafting effective narrative valuation reports. This study identifies six critical components of valuation storytelling that are necessary for a high-quality narrative report: accuracy, balance, clarity, data-driven, efficiency in using multimodal tools, and reporting flawlessness. The establishment of strong relationships and robust processes within valuation practices is emphasised to reinforce these principles. This study also proposes a conceptual framework for valuation storytelling and suggests incorporating this framework into professional guidelines to equip emerging valuers with compelling narrative valuation reports.

The management of pemphigus vulgaris and mucous membrane pemphigoid in a joint oral medicine and dermatology clinic: a five-year narrative review

Pemphigus disease and mucous membrane pemphigoid are autoimmune blistering diseases (AIBDs) which may involve both oral and extra-oral tissues. The Bristol Joint Oral Medicine and Dermatology Combined Clinic was set up in 2014, with the primary aim of improving the standard of care for patients with AIBDs. This interdisciplinary approach aimed to address the medical management challenges due to the multisite nature of these AIBDs.We present a narrative report of the clinical work undertaken within this clinic, focused on the management of this patient cohort within a five-year span (2017-2022). This report outlines the multisite nature of AIBDs and the range of topical and systemic treatments that were employed to achieve adequate disease control and optimise outcomes for patients. We reflect on the experiential benefits of this multidisciplinary clinic extended beyond immediate patient benefits to areas such as specialist training, both from a dermatologist's and oral physician's perspective.

Efficacy and safety of ozone therapy for knee osteoarthritis: an umbrella review of systematic reviews.

The objective of this study is to evaluate the effectiveness and safety of ozone therapy (OT) in the treatment of knee osteoarthritis (KOA), which is the most common form of the disease. We analysed systematic reviews (SRs) of randomised controlled trials (RCTs) using the "A MeaSurement Tool to Assess systematic Reviews" (AMSTAR2) instrument to evaluate their quality. We developed a narrative synthesis report with eight SRs (15 RCTs/3,685 patients) to summarise the findings. The AMSTAR2 analysis indicated that all reviews had critically low confidence ratings. Statistically significant effects in pain reduction using OT compared to placebo groups were reported in three SRs. OT was shown to be comparable to other therapies in one SR and not superior in the other five. Six SRs highlighted the need for additional RCTs with improved methodological quality to confirm the efficacy of OT for KOA. SRs found fewer consistent effects for improving joint function. Regarding safety, seven SRs reported a low prevalence of minor adverse events linked with OT. Finally, this umbrella review highlights the beneficial effects and safety of OT in the treatment of KOA, particularly in pain control. The low methodological quality of RCTs and SRs limits the possibility of drawing conclusions on the effectiveness of the procedure in comparison to other therapies. Ensure adequate compliance with guidelines such as Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) and AMSTAR2 has the ability to improve the quality of SRs in this area.

APCs in sinus floor augmentation.

After tooth loss in the posterior area of the maxilla, sinus floor elevation is often required to compensate the vertical bone loss due to sinus pneumatization. This narrative review reports on the potential benefits of autologous platelet concentrates (APCs) during this procedure. As for transcrestal approach, APCs have been used as "sole" substitute/graft. However, because of the low number of clinical trials available with PRGF, and even none for PRP, no definitive conclusions can be made regarding their efficacy. The number of studies on the use of L-PRF were outnumbered indicating good feasibility for vertical bone gain, with a high implant survival rate and a low degree of complications. PRP and PRGF have not been studied as a "single/sole" substitute for a one-stage lateral window approach, probably because of the weak physical characteristics of the membranes. L-PRF alone appears to be a predictable grafting material for lateral maxillary sinus grafting and a reduced RBH should not be considered as a risk factor. Compared to a "standard" bone substitute L-PRF shows slightly less vertical bone gain (consider enough membrane application and use of bony window as new sinus floor roof over the implant apices), enhanced early resorption (first 6 months after application), but a similar stable bone gain afterward. For a two-stage lateral window approach, APCs "alone" cannot be recommended, due to their weak withstand to the sinus pneumatization forces. APCs combined with bone substitutes seem to accelerate bone formation, without any additional benefits on the long-term new bone gain. The use of L-PRF membranes for the treatment of perforations appears to be an effective treatment option, but further clinical studies are needed to confirm this. Even though the abovementioned statements are based on large numbers of studies, additional RCTs comparing APCs with different types of grafting procedures for sinus elevation are needed.

Soigner au seuil de la mort : l’expérience mystique d’un patient avec la thérapie assistée par la psilocybine

<p>Patients with serious illnesses like advanced cancer often experience existential and psychospiritual distress. Alleviating this form of pain and suffering has proven to be very challenging using conventional treatments. Psilocybin-assisted therapy (PAT) employs the psychoactive effects of psilocybin as a catalyst for a psychotherapeutic process grounded in indigenous traditions and within the context of a therapeutic mindset and environment (“set and setting”). This carefully curated experience of an altered state of consciousness can promote healing and psychospiritual growth independently of the disease trajectory. Current research supports the use of this form of therapy as a safe and effective therapeutic tool for such patients. This narrative case report, based upon and written from the perspective of the treating physician, describes the therapeutic journey of a patient with the fictitious name Martin, as he receives his diagnosis of a terminal illness, engages in PAT, and on to his deathbed. Martin was the first patient in Quebec to receive psilocybin treatment through Canada’s Special Access Program (SAP) and chose to end his life with medical assistance in dying (MAID), both done in the context of homecare and paid for in its entirety by the public healthcare system of Quebec.</p>

An integrated approach to the analysis of NRSA for translation. Mansfield Park in Spanish and German

In Jane Austen’s novels conversation provides internal evidence of the “moral and social nature of characters” (Morini, 2009, p. 9). Among the interplay of speech presentation forms (Page, 1972/2011), Narrative Report of Speech Acts (Leech & Short, 2007) has drawn less scholarly attention than others, for example Free Indirect Speech. However, NRSA condenses information about two communicative acts and therefore two addressers, namely the reporting narrator and the reported speaker (the character). Investigating this superposition of voices requires an integrative approach combining a speech-act theory analysis of the character’s speech with an analysis of both the character’s and the narrator’s dialogic stance, here set in the system of Engagement in Martin and White (2005). This paper aims to present this approach and to apply it to the description of Mansfield Park and its translations into Spanish and German. A sample of instances of NRSA and their translation solutions is analysed. While the most frequent type is literal translation, with both layers of meaning successfully reproduced, instances of translation shifts have been identified involving illocutionary force (addition, elimination or change of illocutionary features) and/or engagement value, combined with changes in certain cooccurring distancing devices. Such shifts suggest possible distortions to characterization cues.

“You Shall Make Lake Victoria, and Become a Goddess of Love”: A Case Report about Traditional Female Ejaculation Techniques in Kenya

Kunyaza is a traditional sexual technique reported in some regions of Central Africa that aims to trigger peri-orgasmic fluid production. A personal narrative experience of a 29-year-old unmarried woman from Kenya suggested that this particular technique may have also been practiced in Kenya for a long time. Indeed, an oral tradition about “how to make Lake Victoria”, a peculiar local expression used to indicate peri-orgasmic fluid production, is reported here. This tradition is transmitted from grandmothers to granddaughters and concerns not only fluid emission but also teachings on personal hygiene, sexual interactions with a partner, and, interestingly, the importance of the woman’s sexual pleasure. In this narrative case report, we compared anecdotes and personal experiences with literature evidence about herbal medicine and traditional practices, suggesting the presence of a particularly woman-centered sexual culture in some more sex-positive ethnic groups in Kenya.

On the possibilities of digital storytelling and reflective reports in the formation of FL teachers’ narrative competence

Relevance. The article describes an action research study on the use of digital storytelling and narrative reflective reports as tools for developing future foreign language teachers’ narrative competence. Purpose. The central purpose was to experiment ways of formation foreign language teachers’ narrative competence in context-based teaching. Methodology. The study involved 68 students of pedagogical faculty of foreign languages. Participants were divided into two groups: 34 third year students who have been involved in narrative project and 34 freshmen of master’s. Throughout their pedagogical practice, the third-year students practiced the course of digital storytelling and writing reflective reports. DS focuses on the students’ own personal experiences in the process of multimedia project creation and implies shaping of the story as well as sharing it with others. Through systematic reflection and analysis, students can develop reflexive and critical awareness, which can also provide the benefit of a documentation of their own professional development. In terms of developing reflective reports, authors revealed that future foreign language teachers are encouraged to examine their story-making processes productively, to create and re-create fresh accounts from different perspectives. Results and Conclusions. The results provide evidence indicating that students’ personal narratives guide classroom activities through the continuum of educational process. Creating narratives, students are cognitively involved, they pay attention to the crucial moments and results, analyzing and looking at themselves critically, developing narrative competence. The implications of these findings in relation to the foreign language teachers are also presented.

Generative Language Models and Open Notes: Exploring the Promise and Limitations.

Patients' online record access (ORA) is growing worldwide. In some countries, including the United States and Sweden, access is advanced with patients obtaining rapid access to their full records on the web including laboratory and test results, lists of prescribed medications, vaccinations, and even the very narrative reports written by clinicians (the latter, commonly referred to as "open notes"). In the United States, patient's ORA is also available in a downloadable form for use with other apps. While survey studies have shown that some patients report many benefits from ORA, there remain challenges with implementation around writing clinical documentation that patients may now read. With ORA, the functionality of the record is evolving; it is no longer only an aide memoire for doctors but also a communication tool for patients. Studies suggest that clinicians are changing how they write documentation, inviting worries about accuracy and completeness. Other concerns include work burdens; while few objective studies have examined the impact of ORA on workload, some research suggests that clinicians are spending more time writing notes and answering queries related to patients' records. Aimed at addressing some of these concerns, clinician and patient education strategies have been proposed. In this viewpoint paper, we explore these approaches and suggest another longer-term strategy: the use of generative artificial intelligence (AI) to support clinicians in documenting narrative summaries that patients will find easier to understand. Applied to narrative clinical documentation, we suggest that such approaches may significantly help preserve the accuracy of notes, strengthen writing clarity and signals of empathy and patient-centered care, and serve as a buffer against documentation work burdens. However, we also consider the current risks associated with existing generative AI. We emphasize that for this innovation to play a key role in ORA, the cocreation of clinical notes will be imperative. We also caution that clinicians will need to be supported in how to work alongside generative AI to optimize its considerable potential.

P19 The role of policy and key stakeholder decision-making in the propagation, and deceleration, of resistance evolution

Abstract Background Antimicrobials have an intangible value on reducing global health burden of infection, yet current valuation methods do not holistically capture the enablement of healthcare as a result of antimicrobials. A lack of incentive and subsequent investment into the novel antimicrobial pipeline demonstrates the urgent need for collaboration amongst those influencing the decision-making process, namely key stakeholders such as governmental bodies, industry and academia. Studies into resistance evolution focus almost entirely on proximate causes, such as the number of antibiotics used in clinical settings, or the understanding of evolutionary pathways to resistance under controlled laboratory conditions. Comparatively, the association between resistance evolution and policy decisions from governments, industry and regulatory bodies is poorly understood. Objectives The primary aim was to evaluate the multifactorial associations between β-lactam development and evolution of β-lactam resistance to inform the current and future antibiotic development pipeline. Methods To undertake this narrative report, we focussed on β-lactam antibiotics, given their clear development timeline and continuous molecular refinement to meet arising clinical and microbiological needs. As such, the evolution of resistance to β-lactams poses a significant threat to mortality, quality of life, and societal function. This report consists of six historical case studies, all of which have significantly influenced the antimicrobial resistance landscape since Fleming’s discovery of penicillin in 1928. We include lesser-known events in our narrative, such as the establishment of the National Research and Development Corporation (NRDC), which propelled the mass commercialization of penicillin, and the subsequent emergence of penicillinases. Pivotal events such as the emergence of ESBL and MBLs into clinical settings also provide insight into the historical decision-making process by key stakeholders such as governmental bodies, industry and academia. Literature reviews were conducted with a focus on the initial introduction of a particular β-lactam into the clinic and when resistance arose. Key stakeholder activities and policy decisions made during these time periods influenced the formation of case studies. Results The case studies are as follows: (i) the influence of the NRDC in accelerated antimicrobial development; (ii) the introduction of the β-lactamase inhibitor—the influence of short-term clinical and financial benefit on prescribing behaviour; (iii) the ‘golden era’ of antibiotics—cephalosporin development and the consequences of short-term market forces; (iv) knowledge of MBL resistance prior to introduction of carbapenems in clinical settings; (v) consequences of controlled manufacturing for the global supply of piperacillin/tazobactam; and (vi) early surveillance studies and the beginning of the antimicrobial stewardship agenda. Conclusions In each case study we provide insight into how key stakeholders can improve practices by learning from past experiences, to inform the future stewardship agenda. We built a case for the need to incorporate evolutionary microbiology into policy and industrial decision-making in order to improve the mitigation of antimicrobial resistance.

Generative artificial intelligence writing open notes: A mixed methods assessment of the functionality of GPT 3.5 and GPT 4.0

Background Worldwide, patients are increasingly being offered access to their full online clinical records including the narrative reports written by clinicians (so-called “open notes”). Against these developments, there is growing interest in the use of generative artificial intelligence (AI) such as OpenAI's ChatGPT to co-assist clinicians with patient-facing documentation. Objective This study aimed to explore the effectiveness of OpenAI's ChatGPT 3.5 and GPT 4.0 in generating three patient-facing clinical notes from fictional general practice narrative reports. Methods On 1 October 2023 and 1 November 2023, we used ChatGPT 3.5 and 4.0 to generate notes for three validated fictional general practice notes, using a prompt in the style of a British primary care note for three commonly presented conditions: (1) type 2 diabetes, (2) major depressive disorder, and (3) a differential diagnosis for suspected bowel cancer. Outputs were analyzed for reading ease, sentiment analysis, empathy, and medical fidelity. Results ChatGPT 3.5 and 4.0 wrote longer notes than the original, and embedded more second person pronouns, with ChatGPT 3.5 scoring higher on both. ChatGPT expanded abbreviations, but readability metrics showed that the notes required a higher reading proficiency, with ChatGPT 3.5 demanding the most advanced level. Across all notes, ChatGPT offered higher signatures of empathy across cognitive, compassion/sympathy, and prosocial cues. Medical fidelity ratings varied across all three cases with ChatGPT 4.0 rated superior. Conclusions While ChatGPT improved sentiment and empathy metrics in the transformed notes, compared to the original they also required higher reading proficiency and omitted details impacting medical fidelity.

Activity of a Medical Relief Team from Shizuoka Hospital that was Dispatched to the Noto Peninsula Earthquake in Reiwa 6 (2024).

The present study aimed to report on the activity of a medical relief team from Juntendo Shizuoka Hospital that was dispatched to the Noto Peninsula Earthquake in Reiwa 6. Narrative report. The activities conducted on-site in the Noto Peninsula involved multiple deployments of the Juntendo University Shizuoka Hospital Disaster Medical Assistance Team (JS-DMAT). The first deployment from January 2nd to January 6th faced challenges due to damaged infrastructure, particularly roads, affecting mobility. The team focused on hospital medical support, patient transportation, and DMAT headquarters assistance. The second deployment, from January 8th to January 12th, encountered persistently damaged roads, leading to incidents but no significant vehicle damage. The team engaged in screening, zoning, medical examinations, and DMAT headquarters support in evacuation shelters. The third team's planned activities in early February were canceled by Shizuoka Prefecture.Additionally, on January 7, 2024, personnel from Juntendo Shizuoka Hospital participated in the Shizuoka Prefectural DMAT Coordination Headquarters activity, documenting DMAT activities and assessing team members' health. The Ministry of Health, Labour and Welfare's request for the fourth Shizuoka Prefecture DMAT dispatch led to the selection of the second JS-DMAT for deployment. The activities related to the Noto Peninsula earthquake by JS-DMAT were reported. Lessons from this disaster are being sought to guide future disaster response preparations.

THE EFFECT OF COVID-19 ON E-LEARNING DELIVERY AS AN APPLICATION PROJECT IN RWANDAN HIGH SCHOOLS

The study adopted descriptive research design using quantitative and qualitative approaches. Agent theory of E-Learning projects planning, and Project management theory of change were used in this study. The population involved in this was staff from NU Vision High School. The total population for this study was therefore composed by 214 persons. Purposive sampling technique was used to sample 139 respondents taken as sample size. Descriptive statistics with frequency distribution and correlation and regression analysis were used to analyse the data. Frequency tables were used to present the data to facilitate understanding and interpretation. The qualitative data was consolidated, analysed in terms of content and a narrative report was produced presenting the respondents' views on explore effect of COVID-19 on E-learning delivery: As an application of project based at NU Vision High School. The study will be a great important to the existing knowledge in E-Learning delivery and will contribute to increasing E-Learning projects planning standards amongst the project management professionals and the entire project industry. Findings indicated that of Access point, internet security database have an effect on E-Learning delivery in NU Vision High School. Besides, findings also revealed the coefficient of correlation equal to r= 0.802, p value=0.000. In this regard, regression analysis was used to conclude the results of the undertaken study and to provide some recommendations. This study recommends that prevent issues regarding the session security, NU Vision High School, should use session ID which is adequately long and unpredictable.

Challenges and Counteracting Strategies Including Optimum Health Service Practices for Frontline Nurses During the Mpox Outbreak and Futuristic Vision.

Monkeypox (mpox) is an evolving infectious disease caused by the monkeypox virus (MPXV). On July 23, 2022, the WHO declared the recent mpox outbreaks a public health emergency of international concern (PHEIC), which terminated on May 11, 2023. As of July 11, 2023, 88,288 confirmed cases and 149 deaths have been reported from 112 countries and territories. Currently, mpox is not a PHEIC, as the outbreak and its impacts are nearly over. Nurses played significant roles during the mpox 2022 outbreak as frontline workers. In light of the impending mpox global outbreak in 2022, this brief report provides an update on the enormous difficulties faced by frontline nurses while playing a crucial role in handling the mpox outbreak and some potential solutions to these difficulties. The methodological framework employed in this narrative brief report involves conducting a comprehensive analysis and synthesis of relevant literature and hypothetical scenarios. The aim is to put forth practical strategies that can effectively tackle the difficulties encountered by frontline nurses in the context of the mpox outbreak. Additionally, the report seeks to envision a healthcare system that is more resilient in the face of future challenges. It is important to understand the challenges the nurses face from their perspective. As frontline health care workers, the various health issues of nurses and their concerns must be taken care of appropriately by adopting optimum health service practices, adequate safety measures, recommended precautionary measures, and boosting them mentally while handling mpox patients. Counseling and the arrangement of workshops are required. Appropriate care should be taken to address the various health issues concerning nurses by adopting health service practices at optimum levels. Side by side, recommended safety and precautionary measures should be followed.

Telepsychiatry in Australia: A Scoping Review.

Telepsychiatry formed part of the Australian mental health response to COVID-19, but relevant reviews pre- and post-pandemic are sparse. This scoping review aimed to map the literature on telepsychiatry in Australia and identify key research priorities. We searched databases (Medline, PubMed, PsycINFO, Scopus, Web of Science, EBSCO Psychology & Behavioral Sciences Collection, Proquest databases, and Cochrane Central Register of Controlled Trials) and reference lists from January 1990 to December 2022. Keywords included telepsychiatry, videoconferencing, telephone consultation, psychiatry, mental health, and Australia. Two reviewers independently screened titles, abstracts, and full texts. We identified 96 publications, one-third of which appeared since 2020. Extracted data included article types, service types, usage levels, outcome measures, perceptions, and research gaps. Most publications were quantitative studies (n = 43) and narrative reports of services (n = 17). Seventy-six papers reported mostly publicly established services. Videoconferencing alone was the most common mode of telepsychiatry. There was increased use over time, with the emergence of metropolitan telepsychiatry during the pandemic. Few papers used validated outcome measures (n = 5) or conducted economic evaluations (n = 4). Content analysis of the papers identified perceptions of patient (and caregiver) benefits, clinical care, service sustainability, and technology capability/capacity. Benefits such as convenience and cost-saving, clinical care issues, and implementation challenges were mentioned. Research gaps in patient perspectives, outcomes, clinical practice, health economics, usage patterns, and technological issues were identified. There is consistent interest in, and growth of, telepsychiatry in Australia. The identified perception themes might serve as a framework for future research on user perspectives and service integration. Other research areas include usage trends, outcome measures, and economic evaluation.

Synthesising Practice-Based Case Study Evidence From Community Interventions: Development of a Method

Practice-based case studies that describe learning from implementation are a useful source of evidence for policy makers, practitioners and researchers. Despite the value of narratives developed in context as a form of experiential or applied evidence, little is known about appropriate qualitative review and synthesis methods to deal with multiple practice-based case studies. This paper reports on a methodological study to develop and pilot a synthesis method using a sample of community wellbeing case studies focused on interventions to improve community infrastructure. The study was conducted in four interlinked phases: (i) literature review to scope synthesis methods (ii) piloting search and selection methods to identify a sample of relevant practice-based case studies that reported experiential learning (iii) undertaking cross case analysis and qualitative synthesis based on framework analysis methods (iv) review and reflection to produce a summative account of the method and agreed definition. The main output from the study was a staged approach to qualitative synthesis of practice-based case studies based on seven steps, which move from identification of a conceptual framework through to producing a narrative report. The potential transferability of this approach and its application in research and policy are critically discussed. Synthesis of case studies derived from community-based interventions could address knowledge gaps in the formal evidence base. While further methodological development is warranted, it is argued that study results form a credible qualitative framework for synthesising practice-based evidence.

Open notes in psychotherapy: An exploratory mixed methods survey of psychotherapy students in Switzerland.

In a growing number of countries, patients are offered access to their full online clinical records, including the narrative reports written by clinicians (the latter, referred to as "open notes"). Even in countries with mature patient online record access, access to psychotherapy notes is not mandatory. To date, no research has explored the views of psychotherapy trainees about open notes. This study aimed to explore the opinions of psychotherapy trainees in Switzerland about patients' access to psychotherapists' free-text summaries. We administered a web-based mixed methods survey to 201 psychotherapy trainees to explore their familiarity with and opinions about the impact on patients and psychotherapy practice of offering patients online access to their psychotherapy notes. Descriptive statistics were used to analyze the 42-item survey, and qualitative descriptive analysis was employed to examine written responses to four open-ended questions. Seventy-two (35.8%) trainees completed the survey. Quantitative results revealed mixed views about open notes. 75% agreed that, in general open notes were a good idea, and 94.1% agreed that education about open notes should be part of psychotherapy training. When considering impact on patients and psychotherapy, four themes emerged: (a) negative impact on therapy; (b) positive impact on therapy; (c) impact on patients; and (d) documentation. Students identified concerns related to increase in workload, harm to the psychotherapeutic relationship, and compromised quality of records. They also identified many potential benefits including better patient communication and informed consent processes. In describing impact on different therapy types, students believed that open notes might have differential impact depending on the psychotherapy approaches. Sharing psychotherapy notes is not routine but is likely to expand. This mixed methods study provides timely insights into the views of psychotherapy trainees regarding the impact of open notes on patient care and psychotherapy practice.

Natural history of rare diseases using natural language processing of narrative unstructured electronic health records: The example of Dravet syndrome.

The increasing implementation of electronic health records allows the use of advanced text-mining methods for establishing new patient phenotypes and stratification, and for revealing outcome correlations. In this study, we aimed to explore the electronic narrative clinical reports of a cohort of patients with Dravet syndrome (DS) longitudinally followed at our center, to identify the capacity of this methodology to retrace natural history of DS during the early years. We used a document-based clinical data warehouse employing natural language processing to recognize the phenotype concepts in the narrative medical reports. We included patients with DS who have a medical report produced before the age of 2 years and a follow-up after the age of 3 years ("DS cohort," 56 individuals). We selected two control populations, a "general control cohort" (275 individuals) and a "neurological control cohort" (281 individuals), with similar characteristics in terms of gender, number of reports, and age at last report. To find concepts specifically associated with DS, we performed a phenome-wide association study using Cox regression, comparing the reports of the three cohorts. We then performed a qualitative analysis of the surviving concepts based on their median age at first appearance. A total of 76 concepts were prevalent in the reports of children with DS. Concepts appearing during the first 2 years were mostly related with the epilepsy features at the onset of DS (convulsive and prolonged seizures triggered by fever, often requiring in-hospital care). Subsequently, concepts related to new types of seizures and to drug resistance appeared. A series of non-seizure-related concepts emerged after the age of 2-3 years, referring to the nonseizure comorbidities classically associated with DS. The extraction of clinical terms by narrative reports of children with DS allows outlining the known natural history of this rare disease in early childhood. This original model of "longitudinal phenotyping" could be applied to other rare and very rare conditions with poor natural history description.

Mapping sex and gender differences in falls among older adults: A scoping review.

There is growing recognition of the importance of sex and gender differences within falls literature, but the characterization of such literature is uncertain. The aim of this scoping review was to (1) map the nature and extent of falls literature examining sex or gender differences among older adults, and (2) identify gaps and opportunities for further research and practice. We used a scoping review methodology. Eligible studies included participants with a mean age of 60 years and study aims specifying falls and either sex or gender concepts. MEDLINE, Embase, CINAHL, Ageline, and Psychinfo databases were searched from inception to March 2, 2022. Records were screened and charted by six independent reviewers. Descriptive and narrative reports were generated. A total of 15,266 records were screened and 74 studies were included. Most studies reported on sex and gender differences in fall risk factors (n = 52, 70%), incidence/prevalence (n = 26, 35%), fall consequences (n = 22, 30%), and fall characteristics (n = 15, 20%). The majority of studies (n = 70, 95%) found significant sex or gender differences in relation to falls, with 39 (53%) identifying significant sex differences and 31 (42%) identifying significant gender differences. However, only three (4%) studies defined sex or gender concepts and only nine (12%) studies used sex or gender terms appropriately. Fifty-six (76%) studies had more female participants than males. Four (5%) were intervention studies. Studies did not report falls in line with guidelines nor use common fall definitions. Sex and gender differences are commonly reported in falls literature. It is critical for future research to use sex and gender terms appropriately and include similar sample sizes across all genders and sexes. In addition, there is a need to examine more gender-diverse populations and to develop interventions to prevent falls that address sex and gender differences among older adults.