Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 27
Filtrar
1.
Health Care Manag Sci ; 24(4): 716-741, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34031792

RESUMO

Early identification of resource needs is instrumental in promoting efficient hospital resource management. Hospital information systems, and electronic health records (EHR) in particular, collect valuable demographic and clinical patient data from the moment patients are admitted, which can help predict expected resource needs in early stages of patient episodes. To this end, this article proposes a data mining methodology to systematically obtain predictions for relevant managerial variables by leveraging structured EHR data. Specifically, these managerial variables are: i) Diagnosis categories, ii) procedure codes, iii) diagnosis-related groups (DRGs), iv) outlier episodes and v) length of stay (LOS). The proposed methodology approaches the problem in four stages: Feature set construction, feature selection, prediction model development, and model performance evaluation. We tested this approach with an EHR dataset of 5,089 inpatient episodes and compared different classification and regression models (for categorical and continuous variables, respectively), performed temporal analysis of model performance, analyzed the impact of training set homogeneity on performance and assessed the contribution of different EHR data elements for model predictive power. Overall, our results indicate that inpatient EHR data can effectively be leveraged to inform resource management on multiple perspectives. Logistic regression (combined with minimal redundancy maximum relevance feature selection) and bagged decision trees yielded best results for predicting categorical and numerical managerial variables, respectively. Furthermore, our temporal analysis indicated that, while DRG classes are more difficult to predict, several diagnosis categories, procedure codes and LOS amongst shorter-stay patients can be predicted with higher confidence in early stages of patient stay. Lastly, value of information analysis indicated that diagnoses, medication and structured assessment forms were the most valuable EHR data elements in predicting managerial variables of interest through a data mining approach.


Assuntos
Registros Eletrônicos de Saúde , Aprendizado de Máquina , Mineração de Dados , Hospitais , Humanos , Modelos Logísticos
2.
Epilepsy Behav ; 97: 123-129, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31247523

RESUMO

BACKGROUND: Innovative uses of mobile health (mHealth) technology for real-time measurement and management of epilepsy may improve the care provided to patients. For instance, seizure detection and quantifying related problems will have an impact on quality of life and improve clinical management for people experiencing frequent and uncontrolled seizures. Engaging patients with mHealth technology is essential, but little is known about patient perspectives on their acceptability. The aim of this study was to conduct an in-depth qualitative analysis of what people with uncontrolled epilepsy think could be the potential uses of mHealth technology and to identify early potential barriers and facilitators to engagement in three European countries. METHOD: Twenty people currently experiencing epileptic seizures took part in five focus groups held across the UK, Italy, and Spain. Participants all completed written consent and a demographic questionnaire prior to the focus group commencing, and each group discussion lasted 60-120 min. A coding frame, developed from a systematic review of the previous literature, was used to structure a thematic analysis. We extracted themes and subthemes from the discussions, focusing first on possible uses of mHealth and then the barriers and facilitators to engagement. RESULTS: Participants were interested in mHealth technology as a clinical detection tool, e.g., to aid communication about seizure occurrence with their doctors. Other suggested uses included being able to predict or prevent seizures, and to improve self-management. Key facilitators to engagement were the ability to raise awareness, plan activities better, and improve safety. Key barriers were the potential for increased stigma and anxiety. Using familiar and customizable products could be important moderators of engagement. CONCLUSION: People with uncontrolled epilepsy think that there is a scope for mHealth technology to be useful in healthcare as a detection or prediction tool. The costs will be compared with the benefits when it comes to engagement, and ongoing work with patients and other stakeholders is needed to design practical resources.


Assuntos
Comunicação , Epilepsia/terapia , Aceitação pelo Paciente de Cuidados de Saúde , Relações Médico-Paciente , Autogestão , Telemedicina , Adulto , Atitude Frente a Saúde , Gerenciamento Clínico , Feminino , Grupos Focais , Teoria Fundamentada , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Participação do Paciente , Qualidade de Vida , Convulsões , Espanha , Reino Unido , Adulto Jovem
3.
Immunogenetics ; 70(3): 169-177, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-28842783

RESUMO

Influenza epidemics are a serious global public health and economic problem. The IFITM3 allele (rs12252-C) was suggested as a population-based genetic risk factor for severe influenza virus infection by A(H1N1)pdm09. We analyzed the population genetics of IFITM3 variants in the Portuguese general population (n = 200) and Central Africans (largely Angolan) (n = 148) as well as its association to influenza severity in Portuguese patients (n = 41). Seven SNPs, within the 352 bp IFITM3 amplicon around rs12252, were identified. SNP distributions in the Portuguese appeared at an intermediate level between the Africans and other Europeans. According to HapMap, rs34481144 belongs to the same linkage disequilibrium (LD) block as rs12252 and is in strong LD with rs6421983. A negative association with severe relative to mild disease was observed for allele rs34481144-A, indicating a protective effect under the dominant model. Moreover, haplotype Hap4 with rs34481144-A, not including rs12252-C, was significantly associated to mild influenza. Conversely, although with borderline significance, haplotype Hap1 with rs34481144-G, not including rs12252-C, was associated to severe disease. Moreover, in comparison to the general Portuguese population, statistical significant differences in the frequencies of the protective allele rs34481144-A in the severe disease group, the deleterious Hap1 in the mild disease group, and the protective Hap4 in the severe disease group were observed. The population attributable risk (PAR) for the targeted rs34481144 allele or genotype was of 55.91 and 64.44% in the general population and the mildly infected individuals, respectively. Implication of these variants in disease phenotype needs further validation, namely through functional analysis as is discussed.


Assuntos
Genética Populacional , Vírus da Influenza A Subtipo H1N1/genética , Influenza Humana/genética , Proteínas de Membrana/genética , Proteínas de Ligação a RNA/genética , Adulto , África Central/epidemiologia , Alelos , Feminino , Estudos de Associação Genética , Predisposição Genética para Doença , Genótipo , Humanos , Vírus da Influenza A Subtipo H1N1/imunologia , Influenza Humana/epidemiologia , Influenza Humana/imunologia , Influenza Humana/virologia , Masculino , Proteínas de Membrana/imunologia , Pessoa de Meia-Idade , Polimorfismo de Nucleotídeo Único , Portugal/epidemiologia , Proteínas de Ligação a RNA/imunologia , Fatores de Risco , Índice de Gravidade de Doença
4.
J Med Internet Res ; 20(7): e10480, 2018 07 12.
Artigo em Inglês | MEDLINE | ID: mdl-30001997

RESUMO

BACKGROUND: Remote measurement technology refers to the use of mobile health technology to track and measure change in health status in real time as part of a person's everyday life. With accurate measurement, remote measurement technology offers the opportunity to augment health care by providing personalized, precise, and preemptive interventions that support insight into patterns of health-related behavior and self-management. However, for successful implementation, users need to be engaged in its use. OBJECTIVE: Our objective was to systematically review the literature to update and extend the understanding of the key barriers to and facilitators of engagement with and use of remote measurement technology, to guide the development of future remote measurement technology resources. METHODS: We conducted a systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines involving original studies dating back to the last systematic review published in 2014. We included studies if they met the following entry criteria: population (people using remote measurement technology approaches to aid management of health), intervention (remote measurement technology system), comparison group (no comparison group specified), outcomes (qualitative or quantitative evaluation of the barriers to and facilitators of engagement with this system), and study design (randomized controlled trials, feasibility studies, and observational studies). We searched 5 databases (MEDLINE, IEEE Xplore, EMBASE, Web of Science, and the Cochrane Library) for articles published from January 2014 to May 2017. Articles were independently screened by 2 researchers. We extracted study characteristics and conducted a content analysis to define emerging themes to synthesize findings. Formal quality assessments were performed to address risk of bias. RESULTS: A total of 33 studies met inclusion criteria, employing quantitative, qualitative, or mixed-methods designs. Studies were conducted in 10 countries, included male and female participants, with ages ranging from 8 to 95 years, and included both active and passive remote monitoring systems for a diverse range of physical and mental health conditions. However, they were relatively short and had small sample sizes, and reporting of usage statistics was inconsistent. Acceptability of remote measurement technology according to the average percentage of time used (64%-86.5%) and dropout rates (0%-44%) was variable. The barriers and facilitators from the content analysis related to health status, perceived utility and value, motivation, convenience and accessibility, and usability. CONCLUSIONS: The results of this review highlight gaps in the design of studies trialing remote measurement technology, including the use of quantitative assessment of usage and acceptability. Several processes that could facilitate engagement with this technology have been identified and may drive the development of more person-focused remote measurement technology. However, these factors need further testing through carefully designed experimental studies. TRIAL REGISTRATION: International Prospective Register of Systematic Reviews (PROSPERO) CRD42017060644; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=60644 (Archived by WebCite at http://www.webcitation.org/70K4mThTr).


Assuntos
Participação do Paciente/métodos , Tecnologia de Sensoriamento Remoto/métodos , Telemedicina/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Adulto Jovem
5.
Ann Hematol ; 96(11): 1921-1929, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28887661

RESUMO

Inherited deletions of α-globin genes and/or their upstream regulatory elements (MCSs) give rise to α-thalassemia, an autosomal recessive microcytic hypochromic anemia. In this study, multiplex ligation-dependent probe amplification performed with commercial and synthetic engineered probes, Gap-PCR, and DNA sequencing were used to characterize lesions in the sub-telomeric region of the short arm of chromosome 16, possibly explaining the α-thalassemia/HbH disease phenotype in ten patients. We have found six different deletions, in heterozygosity, ranging from approximately 3.3 to 323 kb, two of them not previously described. The deletions fall into two categories: one includes deletions which totally remove the α-globin gene cluster, whereas the other includes deletions removing only the distal regulatory elements and keeping the α-globin genes structurally intact. An indel was observed in one patient involving the loss of the MCS-R2 and the insertion of 39 bp originated from a complex rearrangement spanning the deletion breakpoints. Finally, in another case, no α-globin gene cluster deletion was found and the patient revealed to be a very unusual case of acquired α-thalassemia-myelodysplastic syndrome. This study further illustrates the diversity of genomic lesions and underlying molecular mechanisms leading to α-thalassemia.


Assuntos
Deleção de Genes , Hemoglobinas/genética , Mutação Puntual/genética , Talassemia alfa/genética , Adolescente , Adulto , Sequência de Bases , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem , Talassemia alfa/diagnóstico
6.
Tumour Biol ; 35(5): 4687-95, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-24477574

RESUMO

Oral tumors are a growing health problem worldwide; thus, it is mandatory to establish genetic markers in order to improve diagnosis and early detection of tumors, control relapses and, ultimately, delineate individualized therapies. This study was the first to evaluate and discuss the clinical applicability of a multiplex ligation-dependent probe amplification (MLPA) probe panel directed to head and neck cancer. Thirty primary oral squamous cell tumors were analyzed using the P428 MLPA probe panel. We detected genetic imbalances in 26 patients and observed a consistent pattern of distribution of genetic alterations in terms of losses and gains for some chromosomes, particularly for chromosomes 3, 8, and 11. Regarding the latter, some specific genes were highlighted due to frequent losses of genetic material--RARB, FHIT, CSMD1, GATA4, and MTUS1--and others due to gains--MCCC1, MYC, WISP1, PTK2, CCND1, FGF4, FADD, and CTTN. We also verified that the gains of MYC and WISP1 genes seem to suggest higher propensity of tumors localized in the floor of the mouth. This study proved the value of this MLPA probe panel for a first-tier analysis of oral tumors. The probemix was developed to include target regions that have been already shown to be of diagnostic/prognostic relevance for oral tumors. Furthermore, this study emphasized several of those specific genetic targets, suggesting its importance to oral tumor development, to predict patients' outcomes, and also to guide the development of novel molecular therapies.


Assuntos
Carcinoma de Células Escamosas/genética , Neoplasias Bucais/genética , Reação em Cadeia da Polimerase Multiplex/métodos , Medicina de Precisão , Adulto , Idoso , Idoso de 80 Anos ou mais , Carcinoma de Células Escamosas/patologia , Carcinoma de Células Escamosas/virologia , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias Bucais/patologia , Neoplasias Bucais/virologia , Papillomaviridae/classificação , Papillomaviridae/genética
7.
J Imaging ; 9(3)2023 Mar 08.
Artigo em Inglês | MEDLINE | ID: mdl-36976114

RESUMO

This work presents a novel framework for web-based environment-aware rendering and interaction in augmented reality based on WebXR and three.js. It aims at accelerating the development of device-agnostic Augmented Reality (AR) applications. The solution allows for a realistic rendering of 3D elements, handles geometry occlusion, casts shadows of virtual objects onto real surfaces, and provides physics interaction with real-world objects. Unlike most existing state-of-the-art systems that are built to run on a specific hardware configuration, the proposed solution targets the web environment and is designed to work on a vast range of devices and configurations. Our solution can use monocular camera setups with depth data estimated by deep neural networks or, when available, use higher-quality depth sensors (e.g., LIDAR, structured light) that provide a more accurate perception of the environment. To ensure consistency in the rendering of the virtual scene a physically based rendering pipeline is used, in which physically correct attributes are associated with each 3D object, which, combined with lighting information captured by the device, enables the rendering of AR content matching the environment illumination. All these concepts are integrated and optimized into a pipeline capable of providing a fluid user experience even on middle-range devices. The solution is distributed as an open-source library that can be integrated into existing and new web-based AR projects. The proposed framework was evaluated and compared in terms of performance and visual features with two state-of-the-art alternatives.

8.
Cureus ; 15(1): e33313, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36741627

RESUMO

Hurler syndrome (HS) belongs to the category of mucopolysaccharidosis (MPS), a spectrum of rare genetic disorders of the mucopolysaccharides metabolism. This syndrome is due to a defect in α-iduronidase, an enzyme responsible for the degradation of the glycosaminoglycans (GAGs) heparin and dermatan sulfate. Intra and extracellular accumulation of these non-metabolized substances may lead to multisystemic dysfunction, with severe stomatognathic involvement that may often need treatment. The aim of this article is to present the heterogeneity of orofacial and radiographic findings observed in two patients with HS with long-term follow-up, who were referred to our Stomatology department.

9.
Cureus ; 15(5): e39186, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-37332430

RESUMO

Crohn's disease is an inflammatory granulomatous and chronic disease characterized by inflammation of the gastrointestinal mucosa with extra-intestinal manifestations. Oral lesions seem to occur as specific lesions like lip swelling, cobblestone or tag lesions, or nonspecific lesions like ulcers. The present case report describes an orofacial Crohn's disease case, a rare presentation of Crohn's disease, managed with infliximab. Oral Crohn's disease refers to the spread of manifestations of Crohn's disease and could precede other signs. Physicians have to be aware of oral mucosal changes. The treatment options are based on the use of corticosteroids, immune-modulators and biologics. The best plan and therapy to control oral Crohn's disease requires early and precise diagnosis.

10.
Cureus ; 14(8): e27874, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36110449

RESUMO

Lesch-Nyhan syndrome (LNS) is an inherited recessive X-related disorder caused by a deficiency of the purine salvage enzyme hypoxanthine-guanine phosphoribosyltransferase. It is characterized by dystonia and compulsive self-mutilation, in particular, biting behavior on the oral mucosa, tongue, lips, fingers, and shoulders, typically before one year of age. The majority of these patients require several procedures, including dental extractions, to prevent significant secondary lesions. This article aims to report a clinical case of a 12-year-old boy with an LNS diagnosis who was referred to the Paediatric Stomatology Department of Central Lisbon University Hospital. Since the age of eight, the patient had displayed self-harm behavior, with arm and oral injuries. On evaluation, he presented with deep ulcerated lesions on the lips and tongue, with substance loss associated with a significant decrease in food intake and consequent weight loss. The management included conservative therapy with gabapentin, lorazepam, and botulinum toxin injections. A successful reduction of self-mutilation with no signs of new lesions in the oral cavity and an improvement in nutritional status were reported. The therapeutic approach is essential to provide the best quality of life for patients and their caregivers. To delay radical treatments, multiple therapeutic options can be used. The oral pathology team considered that the most appropriate therapy was botulinum toxin A injections along with therapeutic adjustment, which was effective in wound healing and self-mutilation behavior ceasing at the two-month follow-up.

11.
Cureus ; 14(3): e23205, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35449651

RESUMO

Campylobacter rectus is considered to be a primary periodontal pathogen that is rarely identified in extraoral specimens. We report a case of pleural empyema caused by Campylobacter rectus: the pathogen was isolated in the drained pleural fluid sample. Since the patient had previously undergone multiple antibiotic treatments, oral cultures were highly unlikely to be positive, although poor dental hygiene appears to be the leading risk factor for C. rectus systemic infections. The present case illustrates that C. rectus can be a cause of not only periodontal disease but also pulmonary infection.

12.
Epigenetics ; 17(13): 1961-1975, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35856633

RESUMO

Methylation microarray and bisulphite sequencing are often used to study 5'-methylcytosine (5'-mC) modification of CpG dinucleotides in the human genome. Although both technologies produce trustworthy results, the evaluation of the methylation status of CpG sites suffers from the potential side effects of DNA modification by bisulphite and/or the ambiguity of mapping short reads in repetitive and highly homologous genomic regions, respectively. Nanopore sequencing is an attractive alternative for the study of 5'-mC since it allows sequencing of native DNA molecules, whereas the long reads produced by this technology help to increase the resolution of those genomic regions. In this work, we show that nanopore sequencing with 10X coverage depth, using DNA from a human cell line, produces 5'-mC methylation frequencies consistent with those obtained by 450k microarray, digital restriction enzyme analysis of methylation, and reduced representation bisulphite sequencing. High correlation between methylation frequencies obtained by nanopore sequencing and the other methodologies was also noticeable in either low or high GC content regions, including CpG islands and transcription start sites. We also showed that a minimum of five reads per CpG yields strong correlations (>0.89) in replicate nanopore sequencing runs and an almost uniform linearity of the methylation frequency variation between zero and one. Furthermore, nanopore sequencing was able to correctly display methylation frequency patterns based on genomic annotations of CpG regions. These results demonstrate that nanopore sequencing is a fast, robust, and reliable approach to the study of 5'-mC in the human genome with low coverage depth.


Assuntos
Sequenciamento por Nanoporos , Humanos , Genoma Humano , Sequenciamento de Nucleotídeos em Larga Escala/métodos , Metilação de DNA , Análise de Sequência de DNA/métodos , 5-Metilcitosina , DNA
13.
Int J Infect Dis ; 112: 318-320, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34547489

RESUMO

Re-positivity of SARS-CoV-2 tests is widely reported, raising discussion about guidance for patient discharge and ending isolation. The unsuccessful recovery of replication-competent virus and/or absence of secondary cases has suggested that re-positive patients are not contagious. This study reports SARS-CoV-2 re-positivity in a healthcare professional 16 days after three negative tests, with viral genome sequencing supporting contagiousness leading to secondary cases.


Assuntos
COVID-19 , SARS-CoV-2 , Atenção à Saúde , Genoma Viral , Humanos , Alta do Paciente
14.
Health Syst (Basingstoke) ; 10(2): 138-161, 2020 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-34104432

RESUMO

Structured data formats are gaining momentum in electronic health records and can be leveraged for decision support and research. Nevertheless, such structured data formats have not been explored for clinical coding, which is an essential process requiring significant manual workload in health organisations. This article explores the extent to which fully structured clinical data can support assignment of clinical codes to inpatient episodes, through a methodology that tackles high dimensionality issues, addresses the multi-label nature of coding and optimises model parameters. The methodology encompasses transformation of raw data to define a feature set, build a data matrix representation, and testing combinations of feature selection methods with machine learning models to predict code assignment. The methodology was tested with a real hospital dataset and showed varying predictive power across codes, while demonstrating the potential of leveraging structuring data to reduce workload and increase efficiency in clinical coding.

15.
JMIR Mhealth Uhealth ; 8(6): e15086, 2020 06 10.
Artigo em Inglês | MEDLINE | ID: mdl-32519975

RESUMO

BACKGROUND: Remote measurement technology (RMT), including the use of mobile phone apps and wearable devices, may provide the opportunity for real-world assessment and intervention that will streamline clinical input for years to come. In order to establish the benefits of this approach, we need to operationalize what is expected in terms of a successful measurement. We focused on three clinical long-term conditions where a novel case has been made for the benefits of RMT: major depressive disorder (MDD), multiple sclerosis (MS), and epilepsy. OBJECTIVE: The aim of this study was to conduct a consultation exercise on the clinical end point or outcome measurement priorities for RMT studies, drawing on the experiences of people with chronic health conditions. METHODS: A total of 24 participants (16/24 women, 67%), ranging from 28 to 65 years of age, with a diagnosis of one of three chronic health conditions-MDD, MS, or epilepsy-took part in six focus groups. A systematic thematic analysis was used to extract themes and subthemes of clinical end point or measurement priorities. RESULTS: The views of people with MDD, epilepsy, and MS differed. Each group highlighted unique measurements of importance, relevant to their specific needs. Although there was agreement that remote measurement could be useful for tracking symptoms of illness, some symptoms were specific to the individual groups. Measuring signs of wellness was discussed more by people with MDD than by people with MS and epilepsy. However, overlap did emerge when considering contextual factors, such as life events and availability of support (MDD and epilepsy) as well as ways of coping (epilepsy and MS). CONCLUSIONS: This is a unique study that puts patients' views at the forefront of the design of a clinical study employing novel digital resources. In all cases, measuring symptom severity is key; people want to know when their health is getting worse. Second, symptom severity needs to be placed into context. A holistic approach that, in some cases, considers signs of wellness as well as illness, should be the aim of studies employing RMT to understand the health of people with chronic conditions.


Assuntos
Transtorno Depressivo Maior , Aplicativos Móveis , Doença Crônica , Transtorno Depressivo Maior/diagnóstico , Transtorno Depressivo Maior/terapia , Exercício Físico , Feminino , Humanos , Tecnologia
16.
JMIR Mhealth Uhealth ; 8(5): e16043, 2020 05 07.
Artigo em Inglês | MEDLINE | ID: mdl-32379055

RESUMO

BACKGROUND: Despite the increasing use of remote measurement technologies (RMT) such as wearables or biosensors in health care programs, challenges associated with selecting and implementing these technologies persist. Many health care programs that use RMT rely on commercially available, "off-the-shelf" devices to collect patient data. However, validation of these devices is sparse, the technology landscape is constantly changing, relative benefits between device options are often unclear, and research on patient and health care provider preferences is often lacking. OBJECTIVE: To address these common challenges, we propose a novel device selection framework extrapolated from human-centered design principles, which are commonly used in de novo digital health product design. We then present a case study in which we used the framework to identify, test, select, and implement off-the-shelf devices for the Remote Assessment of Disease and Relapse-Central Nervous System (RADAR-CNS) consortium, a research program using RMT to study central nervous system disease progression. METHODS: The RADAR-CNS device selection framework describes a human-centered approach to device selection for mobile health programs. The framework guides study designers through stakeholder engagement, technology landscaping, rapid proof of concept testing, and creative problem solving to develop device selection criteria and a robust implementation strategy. It also describes a method for considering compromises when tensions between stakeholder needs occur. RESULTS: The framework successfully guided device selection for the RADAR-CNS study on relapse in multiple sclerosis. In the initial stage, we engaged a multidisciplinary team of patients, health care professionals, researchers, and technologists to identify our primary device-related goals. We desired regular home-based measurements of gait, balance, fatigue, heart rate, and sleep over the course of the study. However, devices and measurement methods had to be user friendly, secure, and able to produce high quality data. In the second stage, we iteratively refined our strategy and selected devices based on technological and regulatory constraints, user feedback, and research goals. At several points, we used this method to devise compromises that addressed conflicting stakeholder needs. We then implemented a feedback mechanism into the study to gather lessons about devices to improve future versions of the RADAR-CNS program. CONCLUSIONS: The RADAR device selection framework provides a structured yet flexible approach to device selection for health care programs and can be used to systematically approach complex decisions that require teams to consider patient experiences alongside scientific priorities and logistical, technical, or regulatory constraints.


Assuntos
Telemedicina , Pessoal de Saúde , Humanos , Tecnologia
17.
Mult Scler Relat Disord ; 32: 123-132, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31125754

RESUMO

BACKGROUND: Smartphone apps and wearable devices could augment clinical practice by detecting changes in health status for multiple sclerosis (MS). This study sought to investigate potential barriers and facilitators for uptake and sustained use in (i) people with both relapsing remitting MS (RRMS) and progressive MS (PMS) and (ii) across different countries. METHODS: Twenty four participants with MS took part in four focus groups held in three countries (2 in the UK, 1 in Spain, and 1 in Italy) to investigate potential barriers and facilitators for mHealth technology. A systematic thematic analysis was used to extract themes and sub-themes. RESULTS: Facilitators and barriers were organised into functional technology-related factors and non-functional health-related and user-related factors. Twelve themes captured all requirements across the three countries for both RRMS and PMS. Key requirements included accommodation for varying physical abilities, providing information and memory aids. Potential negative effects on mood and providing choice and control as part of overcoming practical challenges were identified. CONCLUSIONS: We took a cross-national perspective and found many similarities between three European countries across people with RRMS and PMS. Future provision should accommodate the key requirements identified to engage people with MS in scalable mHealth interventions.


Assuntos
Diversidade Cultural , Gerenciamento Clínico , Progressão da Doença , Esclerose Múltipla Recidivante-Remitente/diagnóstico , Esclerose Múltipla Recidivante-Remitente/etnologia , Telemedicina/métodos , Adulto , Estudos Transversais , Feminino , Grupos Focais , Humanos , Itália/etnologia , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/diagnóstico , Esclerose Múltipla/etnologia , Esclerose Múltipla/psicologia , Esclerose Múltipla Recidivante-Remitente/psicologia , Espanha/etnologia , Reino Unido/etnologia
18.
J Interv Card Electrophysiol ; 55(2): 207-211, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30852744

RESUMO

BACKGROUND: Despite the important role of cardiac pacing in preventing syncope and sudden cardiac death in familial amyloid polyneuropathy (FAP), we lack clear guidelines as to the ideal timing and indications for permanent pacemaker implantation. PURPOSE: The purpose of this study was to evaluate the ideal timing for pacemaker implantation in FAP patients submitted to liver transplantation. METHODS: Retrospective study of 258 FAP patients submitted to liver transplantation between 1992 and 2012. Comparison of three groups: (A) patients without pacemaker (N = 122); (B) patients submitted to pacemaker implantation after liver transplantation, with documented conduction disorders (N = 73); and (C) patients submitted to "prophylactic" pacemaker implantation before transplantation, (N = 73). Patients were followed up for 12.2 ± 6.7 years. RESULTS: The majority of patients (57%) were referred for pacemaker implantation, which occurred before liver transplantation in 50% of cases. Patients who required pacemaker after transplantation presented significantly higher Machado-Joseph Score during pre-transplant evaluation than those who did not require pacemaker (24 ± 10 vs 20 ± 10, p = .025), and also exhibited higher levels of hepatic cytolysis enzymes and hyperbilirubinemia. The most common indication for permanent pacemaker was first degree atrioventricular block, with a mean time between transplantation and pacemaker implantation of 8.7 ± 4.2 years. During long-term follow-up, all-cause mortality was 27% and was lowest in the group submitted to pacemaker implantation only after liver transplantation (p = 0.002). CONCLUSION: The majority of FAP patients submitted to liver transplantation will need a pacemaker at some time of follow-up. However, it seems that there is no benefit in "prophylactic" cardiac pacing before liver transplantation.


Assuntos
Neuropatias Amiloides Familiares/complicações , Neuropatias Amiloides Familiares/cirurgia , Morte Súbita Cardíaca/prevenção & controle , Transplante de Fígado , Marca-Passo Artificial , Síncope/prevenção & controle , Adulto , Feminino , Humanos , Masculino , Estudos Retrospectivos
19.
JMIR Mhealth Uhealth ; 7(1): e11325, 2019 01 30.
Artigo em Inglês | MEDLINE | ID: mdl-30698535

RESUMO

BACKGROUND: Mobile technology has the potential to provide accurate, impactful data on the symptoms of depression, which could improve health management or assist in early detection of relapse. However, for this potential to be achieved, it is essential that patients engage with the technology. Although many barriers to and facilitators of the use of this technology are common across therapeutic areas and technology types, many may be specific to cultural and health contexts. OBJECTIVE: This study aimed to determine the potential barriers to and facilitators of engagement with mobile health (mHealth) technology for remote measurement and management of depression across three Western European countries. METHODS: Participants (N=25; 4:1 ratio of women to men; age range, 25-73 years) who experienced depression participated in five focus groups held in three countries (two in the United Kingdom, two in Spain, and one in Italy). The focus groups investigated the potential barriers to and facilitators of the use of mHealth technology. A systematic thematic analysis was used to extract themes and subthemes. RESULTS: Facilitators and barriers were categorized as health-related factors, user-related factors, and technology-related factors. A total of 58 subthemes of specific barriers and facilitators or moderators emerged. A core group of themes including motivation, potential impact on mood and anxiety, aspects of inconvenience, and ease of use was noted across all countries. CONCLUSIONS: Similarities in the barriers to and facilitators of the use of mHealth technology have been observed across Spain, Italy, and the United Kingdom. These themes provide guidance on ways to promote the design of feasible and acceptable cross-cultural mHealth tools.


Assuntos
Depressão/terapia , Participação do Paciente/métodos , Telemedicina/tendências , Adulto , Idoso , Depressão/psicologia , Feminino , Grupos Focais/métodos , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Participação do Paciente/psicologia , Participação do Paciente/tendências , Pesquisa Qualitativa , Espanha , Telemedicina/métodos , Reino Unido
20.
GE Port J Gastroenterol ; 26(1): 54-58, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30675504

RESUMO

INTRODUCTION: Acute liver failure is an uncommon condition associated with a high mortality. Most patients do not survive without liver transplantation. In the last decades, auxiliary liver transplantation has emerged as a therapeutic option. CLINICAL CASE: The authors present two cases of acute liver failure that required liver transplantation. Given the patients' young age and the preserved macroscopic liver pattern evaluated in surgery, auxiliary liver transplantation was executed using different surgical approaches. Afterwards, following confirmed full native liver regeneration, the patients were submitted to auxiliary liver hepatectomy, which was accomplished without complications. CONCLUSION: Auxiliary liver transplantation can be regarded as an effective temporary treatment for acute liver failure in selected cases, allowing an immunosuppression-free life.


INTRODUÇÃO: A falência hepática aguda é uma entidade clínica pouco comum, mas associada a elevada mortalidade. A maioria dos doentes não sobreviverá sem transplante hepático. Nas últimas décadas, o transplante hepático auxiliar tem sido utilizado como uma opção terapêutica valorizável. CASO CLÍNICO: Apresentam-se dois casos de falência hepática aguda tratados com transplante hepático. Tendo em conta a idade jovem dos doentes e a noção de preservação macroscópica do fígado, recorreu-se à opção de transplante hepático auxiliar utilizando técnicas diferentes. Posteriormente, após confirmação de regeneração hepática completa, procedeu-se à hepatectomia do fígado auxiliar. CONCLUSÃO: O transplante hepático auxiliar constitui uma terapêutica transitória eficaz em alguns casos de falência hepática aguda, permitindo um futuro isento de imunossupressão.

SELEÇÃO DE REFERÊNCIAS
Detalhe da pesquisa