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Insights Into Oropharyngeal Dysphagia From Administrative Data and Clinical Registries: A Literature Review.

ABSTRACT: Purpose:The call for data-driven health care has been bolstered by the digitization of medical records, quality initiatives, and payment reform. Administrative databases and clinical registries are increasingly being used to study oropharyngeal dysphagia and to facilitate data-driven decision making. The objective of this work was to summarize key findings, etiologies studied, data sources used, study objectives, and quality of evidence of all original research articles that have investigated oropharyngeal dysphagia or aspiration pneumonia using administrative or clinical registry data to date. Method:A literature search was completed in MEDLINE, Scopus, and Google Scholar (January 1, 1990, to February 1, 2017). Each study that met inclusion criteria was rated for quality of evidence on a 5-point scale. Results:Eighty-four research articles were included in the final analysis (n = 221-1,649,871). Over the past 20 years, the number of new publications in this area has quintupled. Most of the administrative database and clinical registry studies of dysphagia have been retrospective cohort studies and cross-sectional studies and limited to quality of evidence levels of 3-4. In these studies, much has been learned about risk factors for dysphagia and pneumonia in defined populations and health care costs and usage. Little has been gleaned from these studies regarding swallowing physiology or dysphagia management. Conclusions:Investigators are just beginning to develop the methods to study oropharyngeal dysphagia using administrative data and clinical registries. Future research is needed in all areas, from the fundamental issue of how to identify individuals with dysphagia with high sensitivity in these data sets to evaluating treatment effectiveness. Supplemental Material:https://doi.org/10.23641/asha.6066515.

SUBMITTER: Bartlett RS

PROVIDER: S-EPMC6105122 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Insights Into Oropharyngeal Dysphagia From Administrative Data and Clinical Registries: A Literature Review.

Bartlett Rebecca S RS Thibeault Susan L SL

American journal of speech-language pathology 20180501 2

<h4>Purpose</h4>The call for data-driven health care has been bolstered by the digitization of medical records, quality initiatives, and payment reform. Administrative databases and clinical registries are increasingly being used to study oropharyngeal dysphagia and to facilitate data-driven decision making. The objective of this work was to summarize key findings, etiologies studied, data sources used, study objectives, and quality of evidence of all original research articles that have investi ...[more]

PMID: 29710238

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Project description:Study Design Review. Objective Postoperative oropharyngeal dysphagia is one of the most common complications following anterior cervical spine surgery (ACSS). We review and summarize recent literature in order to provide a general overview of clinical signs and symptoms, assessment, incidence and natural history, pathophysiology, risk factors, treatment, prevention, and topics for future research. Methods A search of English literature regarding dysphagia following anterior cervical spine surgery was conducted using PubMed and Google Scholar. The search was focused on articles published since the last review on this topic was published in 2005. Results Patients who develop dysphagia after ACSS show significant alterations in swallowing biomechanics. Patient history, physical examination, X-ray, direct or indirect laryngoscopy, and videoradiographic swallow evaluation are considered the primary modalities for evaluating oropharyngeal dysphagia. There is no universally accepted objective instrument for assessing dysphagia after ACSS, but the most widely used instrument is the Bazaz Dysphagia Score. Because dysphagia is a subjective sensation, patient-reported instruments appear to be more clinically relevant and more effective in identifying dysfunction. The causes of oropharyngeal dysphagia after ACSS are multifactorial, involving neuronal, muscular, and mucosal structures. The condition is usually transient, most often beginning in the immediate postoperative period but sometimes beginning more than 1 month after surgery. The incidence of dysphagia within one week after ACSS varies from 1 to 79% in the literature. This wide variance can be attributed to variations in surgical techniques, extent of surgery, and size of the implant used, as well as variations in definitions and measurements of dysphagia, time intervals of postoperative evaluations, and relatively small sample sizes used in published studies. The factors most commonly associated with an increased risk of oropharyngeal dysphagia after ACSS are: more levels operated, female gender, increased operative time, and older age (usually >60 years). Dysphagic patients can learn compensatory strategies for the safe and effective passage of bolus material. Certain intraoperative and postoperative techniques may decrease the incidence and/or severity of oropharyngeal dysphagia after ACSS. Conclusions Large, prospective, randomized studies are required to confirm the incidence, prevalence, etiology, mechanisms, long-term natural history, and risk factors for the development of dysphagia after ACSS, as well as to identify prevention measures. Also needed is a universal outcome measurement that is specific, reliable and valid, would include global, functional, psychosocial, and physical domains, and would facilitate comparisons among studies. Results of these studies can lead to improvements in surgical techniques and/or perioperative management, and may reduce the incidence of dysphagia after ACSS.

Project description:INTRODUCTION:Oropharyngeal dysphagia (OD) is a major disorder following stroke. OD can produce alterations in both the efficacy and safety of deglutition and may result in malnutrition, dehydration, frailty, respiratory infections and pneumonia. These complications can be avoided by early detection and treatment of OD in poststroke patients, and hospital stays, medication and mortality rates can be reduced. In addition to acute in-hospital costs from OD complications, there are other costs related to poststroke OD such as direct non-healthcare costs or indirect costs. The objective of this systematic review is to assess and summarise literature on the costs related to OD in poststroke patients. METHODS AND ANALYSIS:A systematic review of studies on the cost of OD and its complications (aspiration, malnutrition, dehydration, aspiration pneumonia and death) in patients who had a stroke will be performed from the perspectives of the hospital, the healthcare system and/or the society. The main outcomes of interest are the costs related to poststroke OD. We will search MEDLINE, Embase and the National Health Service Economic Evaluation Database. Studies will be included if they are partial economic evaluation studies, studies that provide information on costs in adult (>17 years) poststroke patients with OD and/or its complications (malnutrition, dehydration, frailty, respiratory infections and pneumonia) or economic evaluation studies in which the cost of this condition has been estimated. Studies will be excluded if they refer to oesophageal dysphagia or OD caused by causes other than stroke. Main study information will be presented and summarised in tables, separately for studies that provide incremental costs attributable to OD or its complications and studies that report the effect of OD or its complications on total costs of stroke, and according to the perspective from which costs were measured. ETHICS AND DISSEMINATION:The results of this systematic review will be published in a peer-reviewed journal. PROSPERO REGISTRATION NUMBER:CRD42018099977.

Project description:ObjectiveDysphagia develops with low frequency in patients with dermatomyositis. Our objective was to determine the clinical and laboratory features that can estimate the development of dysphagia in dermatomyositis.MethodsThis study included 92 Japanese patients with adult-onset dermatomyositis. The associations between dysphagia and clinical and laboratory features including disease-specific autoantibodies determined by immunoprecipitation assays were analyzed.ResultsVideofluoroscopy swallow study (VFSS) was performed for all patients with clinical dysphagia (n = 13, 14.1%) but not for patients without clinical dysphagia. Typical findings of dysphagia (pharyngeal pooling, n = 11 and/or nasal regurgitation, n = 4) was detected by VFSS in all patients with clinical dysphagia. Eleven patients with dysphagia (84.6%) had anti-transcription intermediary factor 1γ (TIF-1γ) antibody. By univariate analysis, the average age and the male to female ratio, internal malignancy, and anti-TIF-1γ antibody were significantly higher and the frequency of interstitial lung diseases and manual muscle testing (MMT) scores of sternomastoid and dertoid muscles were significantly lower in patients with dysphagia than in patients without dysphagia. Among patients with anti-TIF-1γ antibody, the mean age, the ratios of male to female and internal malignancy were significantly higher and mean MMT scores of sternomastoid muscle were significantly lower in patients with dysphagia compared with patients without dysphagia. By multivariable analysis, the risk of dysphagia was strongly associated with the existence of internal malignancy and ant-TIF-1γ antibody and was also associated with reduced scores of manual muscle test of sternomastoid muscle. Dysphagia was markedly improved after the treatment against myositis in all 13 patients.ConclusionThese findings indicate that dysphagia can develop frequently in patients with internal malignancy, anti-TIF-1γ antibody, or severe muscle weakness of sternomastoid muscle.

Project description:The habenula is a small bilateral epithalamic structure that plays a key role in the regulation of the main monoaminergic systems. It is implicated in many aspects of behavior such as reward processing, motivational behavior, behavioral adaptation, and sensory integration. A role of the habenula has been indicated in the pathophysiology of a number of neuropsychiatric disorders such as depression, addiction, obsessive-compulsive disorder, and bipolar disorder. Neuromodulation of the habenula using deep brain stimulation (DBS) as potential treatment has been proposed and a first successful case of habenula DBS was reported a decade ago. To provide an overview of the current state of habenula DBS in human subjects for the treatment of neuropsychiatric disorders we conducted a systematic review of both the published literature using PUBMED and current and past registered clinical trials using ClinicalTrials.gov as well as the International Clinical Trials Registry Platform. Using PRISMA guidelines five articles and five registered clinical trials were identified. The published articles detailed the results of habenula DBS for the treatment of schizophrenia, depression, obsessive-compulsive disorder, and bipolar disorder. Four are single case studies; one reports findings in two patients and positive clinical outcome is described in five of the six patients. Of the five registered clinical trials identified, four investigate habenula DBS for the treatment of depression and one for obsessive-compulsive disorder. One trial is listed as terminated, one is recruiting, two are not yet recruiting and the status of the fifth is unknown. The planned enrollment varies between 2 to 13 subjects and four of the five are open label trials. While the published studies suggest a potential role of habenula DBS for a number of indications, future trials and studies are necessary. The outcomes of the ongoing clinical trials will provide further valuable insights. Establishing habenula DBS, however, will depend on successful randomized clinical trials to confirm application and clinical benefit of this promising intervention.

Project description:ImportanceDespite the large health burden, reliable data on sepsis epidemiology are lacking; studies using International Statistical Classification of Diseases and Related Health Problems (ICD)-coded hospital discharge diagnosis for sepsis identification suffer from limited sensitivity. Also, ICD data do not allow investigation of underlying pathogens and antimicrobial resistance.ObjectivesTo generate reliable epidemiological estimates by linking data from a population-based database to a reference standard of clinical medical record review.Design, setting, and participantsThis was a retrospective, observational cohort study using a population-based administrative database including all acute care hospitals of the Scania region in Sweden in 2019 and 2020 to identify hospital-treated sepsis cases by ICD codes. From this database, clinical medical records were also selected for review within 6 strata defined by ICD discharge diagnosis (both with and without sepsis diagnosis). Data were analyzed from April to October 2022.Main outcomes and measuresHospital and population incidences of sepsis, case fatality, antimicrobial resistance, and temporal dynamics due to COVID-19 were assessed, as well as validity of ICD-10 case identification methods compared with the reference standard of clinical medical record review.ResultsOut of 295 531 hospitalizations in 2019 in the Scania region of Sweden, 997 patient medical records were reviewed, among which 457 had sepsis according to clinical criteria. Of the patients with clinical sepsis, 232 (51%) were female, and 357 (78%) had at least 1 comorbidity. The median (IQR) age of the cohort was 76 (67-85) years. The incidence of sepsis in hospitalized patients according to the Third International Consensus Definitions for Sepsis and Septic Shock (Sepsis-3) criteria in 2019 was 4.1% (95% CI, 3.6-4.5) by medical record review. This corresponds to an annual incidence rate of 747 (95% CI, 663-832) patients with sepsis per 100 000 population. No significant increase in sepsis during the COVID-19 pandemic nor a decrease in sepsis incidence when excluding COVID-19 sepsis was observed. Few sepsis cases caused by pathogens with antimicrobial resistance were found. The validity of ICD-10-based case identification in administrative data was low.Conclusions and relevanceIn this cohort study of sepsis epidemiology, sepsis was a considerable burden to public health in Sweden. Supplying administrative data with information from clinical medical records can help to generate reliable data on sepsis epidemiology.

Project description:IntroductionAdministrative data are a valuable research resource, but are under-utilised in the UK due to governance, technical and other barriers (e.g., the time and effort taken to gain secure data access). In recent years, there has been considerable government investment in making administrative data "research-ready", but there is no definition of what this term means. A common understanding of what constitutes research-ready administrative data is needed to establish clear principles and frameworks for their development and the realisation of their full research potential.ObjectiveTo define the characteristics of research-ready administrative data based on a systematic review and synthesis of existing literature.MethodsOn 29th June 2021, we systematically searched seven electronic databases for (1) peer-reviewed literature (2) related to research-ready administrative data (3) written in the English language. Following supplementary searches and snowball screening, we conducted a thematic analysis of the identified relevant literature.ResultsOverall, we screened 2,375 records and identified 38 relevant studies published between 2012 and 2021. Most related to administrative data from the UK and US and particularly to health data. The term research-ready was used inconsistently in the literature and there was some conflation with the concept of data being ready for statistical analysis. From the thematic analysis, we identified five defining characteristics of research-ready administrative data: (a) accessible, (b) broad, (c) curated, (d) documented and (e) enhanced for research purposes.ConclusionsOur proposed characteristics of research-ready administrative data could act as a starting point to help data owners and researchers develop common principles and standards. In the more immediate term, the proposed characteristics are a useful framework for cataloguing existing research-ready administrative databases and relevant resources that can support their development.

Project description:BACKGROUND:Clinical trials generally each collect their own data despite routinely collected health data (RCHD) increasing in quality and breadth. Our aim is to quantify UK-based randomised controlled trials (RCTs) accessing RCHD for participant data, characterise how these data are used and thereby recommend how more trials could use RCHD. METHODS:We conducted a systematic review of RCTs accessing RCHD from at least one registry in the UK between 2013 and 2018 for the purposes of informing or supplementing participant data. A list of all registries holding RCHD in the UK was compiled. In cases where registries published release registers, these were searched for RCTs accessing RCHD. Where no release register was available, registries were contacted to request a list of RCTs. For each identified RCT, information was collected from all publicly available sources (release registers, websites, protocol etc.). The search and data extraction were undertaken between January and May 2019. RESULTS:We identified 160 RCTs accessing RCHD between 2013 and 2018 from a total of 22 registries; this corresponds to only a very small proportion of all UK RCTs (about 3%). RCTs accessing RCHD were generally large (median sample size 1590), commonly evaluating treatments for cancer or cardiovascular disease. Most of the included RCTs accessed RCHD from NHS Digital (68%), and the most frequently accessed datasets were mortality (76%) and hospital visits (55%). RCHD was used to inform the primary trial (82%) and long-term follow-up (57%). There was substantial variation in how RCTs used RCHD to inform participant outcome measures. A limitation was the lack of information and transparency from registries and RCTs with respect to which datasets have been accessed and for what purposes. CONCLUSIONS:In the last five years, only a small minority of UK-based RCTs have accessed RCHD to inform participant data. We ask for improved accessibility, confirmed data quality and joined-up thinking between the registries and the regulatory authorities. TRIAL REGISTRATION:PROSPERO CRD42019123088.

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Insights Into Oropharyngeal Dysphagia From Administrative Data and Clinical Registries: A Literature Review.

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Insights Into Oropharyngeal Dysphagia From Administrative Data and Clinical Registries: A Literature Review.

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