1,925 research outputs found
Behavior change interventions: the potential of ontologies for advancing science and practice
A central goal of behavioral medicine is the creation of evidence-based interventions for promoting behavior change. Scientific knowledge about behavior change could be more effectively accumulated using "ontologies." In information science, an ontology is a systematic method for articulating a "controlled vocabulary" of agreed-upon terms and their inter-relationships. It involves three core elements: (1) a controlled vocabulary specifying and defining existing classes; (2) specification of the inter-relationships between classes; and (3) codification in a computer-readable format to enable knowledge generation, organization, reuse, integration, and analysis. This paper introduces ontologies, provides a review of current efforts to create ontologies related to behavior change interventions and suggests future work. This paper was written by behavioral medicine and information science experts and was developed in partnership between the Society of Behavioral Medicine's Technology Special Interest Group (SIG) and the Theories and Techniques of Behavior Change Interventions SIG. In recent years significant progress has been made in the foundational work needed to develop ontologies of behavior change. Ontologies of behavior change could facilitate a transformation of behavioral science from a field in which data from different experiments are siloed into one in which data across experiments could be compared and/or integrated. This could facilitate new approaches to hypothesis generation and knowledge discovery in behavioral science
A critical analysis of the legal and institutional frameworks for the realisation of the rights of persons with disabilities in Zimbabwe
The Zimbabwean society views persons with disabilities (PWDs) ‘as useless
liabilities that have no role to play in society.’ The Zimbabwean Government has
also forgotten PWDs since they are not mentioned in all the country’s national
budgets. This has led to uncountable barriers faced by PWDs in their bid to be
included as equal members of the society. Some of the barriers are constant
discrimination, sheer poverty, lack of access to mainstream public services and
stigma. Hundreds to thousands of PWDs beg for alms in the streets of every
town and city. Zimbabwe then has to be reminded that all PWDs have:
a right to enjoy a decent life, as normal and full as possible, a right which lies at the
heart of the right to human dignity. This right should be jealously guarded and forcefully
protected by all states party to the African Charter in accordance with the well
established principle that all human beings are born free and equal in dignity and
rights.
Thus, the era of silence when it comes to the realisation of the rights of PWDs in
Zimbabwe has to come to an end. All PWDs in Zimbabwe should know that it is
by right and not by privilege to be guaranteed full and effective participation,
and inclusion in society. It is time for Zimbabwe to embrace all the rights for
PWDs without any hesitation. It is time for humanity to celebrate the inherent
dignity, individual autonomy, independence and the right not to be
discriminated against for all PWDs. Every lawmaker in Zimbabwe has to be reminded to delete from the statute books all laws which view disability as a
medical problem and instead, pass laws which are in line with the human rights-based approach which is a more enlightened, realistic and people-centred
approach to disability. No time to play but plenty of time to work…!Thesis (LLM (Human Rights and Democratisation in Africa)) -- University of Pretoria, 2011.http://www.chr.up.ac.za/nf2012Centre for Human RightsLL
Development of aquatic skills in a child with visual and intellectual disability
El objetivo de este estudio de caso fue analizar el desarrollo de las
habilidades acuáticas de un niño con deficiencia visual total e intelectual severa.
Para esto, este niño, de siete años de edad, participó en un programa de
actividades acuáticas, con atención individualizado, durante 12 sesiones. La
matriz de evaluación de las habilidades acuáticas de Winnick (2010) fue utilizada
como instrumento para recolectar datos. El análisis de los datos sucedió de
forma descriptiva. El alumno presentó desempeño positivo en tres categorías:
Entradas, salidas y orientación en el agua. Se destaca la comprensión de la
entrada y de la salida por la rampa adaptada; el dominio en la realización del giro
lateral y del zambullida frontal; y, la mejoría en las 14 habilidades de la categoría
orientación en el agua. Las actividades acuáticas le permitieron al alumno
superar sus dificultades dando un salto cualitativo en la ejecución de
determinadas habilidadesThe purpose of this descriptive case study was to analyze the development of
aquatic skills of a child with total visual and severe intellectual disability.
Therefore, this child, seven years old, participates in a program of water
activities, with individualized service for 12 sessions. The assessment matrix of
aquatic skills, Winnick (2010), was used as a tool for data collection. The
student showed positive performances in three categories: entering and coming
out of the water and in the water orientation. The understanding of the entry is
emphasized and exit through the adapted ramp; controlling the performance of
lateral bearing and frontal diving; and, improvement on the 14 skills in the
category of water orientation. The water activities allowed the student to
overcome difficulties by making a qualitative improvement in the performance of
certain skill
Physiotherapy and neuro rehabilitation on stroke evidence and needs
Scientific knowledge in the area of rehabilitation and physiotherapy for stroke is booming and leading to more sustainable models of practice. Several interventions show positive effects with strong scientific support. However, some issues remain to be clarified like what are the effects of PT on brain activity and what are the effects of hands on interventions. Also a general coherence of interventions and outcomes and outcomes measures need to improve.
With the intent to clarify these questions and to give an overview of Physiotherapy evidence and needs on stroke rehabilitation, this thesis will present the state of the art on a literature review and the four studies developed on the context of this PhD: Physiotherapy Hands-on Interventions and Stroke - Systematic Review; Physiotherapy and Brain Activity on Stroke - Systematic Review; Brain activity during lower limb movement with physiotherapy manual facilitation – an fMRI study; ICF Linking Process for Categorization of Interventions and Outcomes Measures on Stroke Physiotherapy - Delphi panel.
As innovative aspects of this thesis, we highlight: the organization within the ICF framework for the outcomes related with movement; the study of brain activity during a complex multijoint movement of lower limb; the study of immediate effects of manual facilitation of movement, as no similar studies was found on our literature search for this thesis.
Regardless the limitations encountered, the non-conclusive findings and some non-identified evidence, it seems still valid to conclude that Physiotherapy is no longer a “black box”, instead is a evidence-based profession.
Exists clear and evidence based information for clinical settings and scientific community, that hands off physiotherapy is relevant and has efficacy proved on the rehabilitation of stroke patients on the domains of Structure & Functions and Activities & Participation.
This efficacy is extended to the brain activity, which validates the idea that PT can influence neuroplasticity process and consequently contribute for a better recovery in a neurobiological perspective with impact on human performance and autonomy.O conhecimento científico na area da intervenção em utentes com sequelas após Acidente Vascular Cerebral (AVC) e especificamente na área da Fisioterapia, tem crescido nos últimos ano, conduzindo a modelos de prática mais sustentados. São várias as intervneções da Fisioterapia com eficácia comprovada. Contudo, alguns aspectos ainda necessitam de clarificação, como seja quais os efeitos da Fisioterapia na actividade cerebral e quais são os efeitos das intervenções baseadas na manualidade do Fisioterapeuta. É ainda necessária, uma maior coerência entre as intervenções, as variáveis em estudo e os instrumentos de avaliação utilizados.
Com o objectivo de contribuir para o esclarecimento destas questões e de oferecer uma visao global da evidência da intervenção da Fisioterapia e as necessidades de desenvolvimento na intervenção e utentes com AVC, esta tese apresenta um estado da arte na revisão de literature e os quarto estudos desenvolvidos no contexto deste doutoramento: Efeitos da Fisioterapia manual em utentes com AVC - revisão sistemática; Efeitos da Fisioterapia na actividade cerebral em utentes com AVC - revisão sistemática; Efeitos imediatos da facilitação manual na actividade cerebral - estudo com RMf; Processo de categorização de intervenções e intrumentos específicos da intervenção em utentes com AVC - Painel de Delphi.
Como aspectos inovadores, salientamos a organização de acordo com a estrutura da CIF, para as variaveis relacionadas com o movimento; o estudo a actividade cerebral durante um movimento complexo e multi-articular do membro inferior; o estudo dos efeitos imediatos da facilitação manual na actividade cerebral.
Independentemente das limitações encontradas, dos achados não conclusivos e alguns achados de não benefício de intervenções, parece-nos ser válido concluir que a Fisioterapia deixou de ser uma “caixa negra” sendo uma profissão científicamente suportada. Existe informação clara e suportada cientificamente, disponível para os locais de prática e para a comunidade científica, de que a Fisioterapia “hands off” é relevante e tem eficácia comprovada no contexto da intervenção em utentes com AVC, nos domínios da Estrutura e Função e da Actividade e Participação. Esta eficácia estende-se à actividade cerebral, validando a ideia de que a Fisioterapia pode influenciar a neuroplasticidade e consequentemente contribuir para uma recuperação neurobiológica mais adequada, com impacto no desempenho humano e autonomia
Behavior change interventions: the potential of ontologies for advancing science and practice
A central goal of behavioral medicine is the creation of evidence-based interventions for promoting behavior change. Scientific knowledge about behavior change could be more effectively accumulated using "ontologies." In information science, an ontology is a systematic method for articulating a "controlled vocabulary" of agreed-upon terms and their inter-relationships. It involves three core elements: (1) a controlled vocabulary specifying and defining existing classes; (2) specification of the inter-relationships between classes; and (3) codification in a computer-readable format to enable knowledge generation, organization, reuse, integration, and analysis. This paper introduces ontologies, provides a review of current efforts to create ontologies related to behavior change interventions and suggests future work. This paper was written by behavioral medicine and information science experts and was developed in partnership between the Society of Behavioral Medicine's Technology Special Interest Group (SIG) and the Theories and Techniques of Behavior Change Interventions SIG. In recent years significant progress has been made in the foundational work needed to develop ontologies of behavior change. Ontologies of behavior change could facilitate a transformation of behavioral science from a field in which data from different experiments are siloed into one in which data across experiments could be compared and/or integrated. This could facilitate new approaches to hypothesis generation and knowledge discovery in behavioral science
Methods and metrics for the improvement of the interaction and the rehabilitation of cerebral palsy through inertial technology
Cerebral palsy (CP) is one of the most limiting disabilities in childhood, with 2.2 cases
per 1000 1-year survivors. It is a disorder of movement and posture due to a defect or
lesion of the immature brain during the pregnancy or the birth. These motor limitations
appear frequently in combination with sensory and cognitive alterations generally result
in great difficulties for some people with CP to manipulate objects, communicate and
interact with their environment, as well as limiting their mobility.
Over the last decades, instruments such as personal computers have become a popular
tool to overcome some of the motor limitations and promote neural plasticity, especially
during childhood. According to some estimations, 65% of youths with CP that present
severely limited manipulation skills cannot use standard mice nor keyboards. Unfortunately,
even when people with CP use assistive technology for computer access, they face
barriers that lead to the use of typical mice, track balls or touch screens for practical
reasons. Nevertheless, with the proper customization, novel developments of alternative
input devices such as head mice or eye trackers can be a valuable solution for these
individuals.
This thesis presents a collection of novel mapping functions and facilitation algorithms
that were proposed and designed to ease the act of pointing to graphical elements on
the screen—the most elemental task in human-computer interaction—to individuals with
CP. These developments were implemented to be used with any head mouse, although
they were all tested with the ENLAZA, an inertial interface. The development of such
techniques required the following approach:
Developing a methodology to evaluate the performance of individuals with CP in
pointing tasks, which are usually described as two sequential subtasks: navigation
and targeting.
Identifying the main motor abnormalities that are present in individuals with CP
as well as assessing the compliance of these people with standard motor behaviour
models such as Fitts’ law.
Designing and validating three novel pointing facilitation techniques to be implemented
in a head mouse. They were conceived for users with CP and muscle
weakness that have great difficulties to maintain their heads in a stable position.
The first two algorithms consist in two novel mapping functions that aim to facilitate
the navigation phase, whereas the third technique is based in gravity wells
and was specially developed to facilitate the selection of elements in the screen.
In parallel with the development of the facilitation techniques for the interaction
process, we evaluated the feasibility of use inertial technology for the control of
serious videogames as a complement to traditional rehabilitation therapies of posture
and balance. The experimental validation here presented confirms that this
concept could be implemented in clinical practice with good results.
In summary, the works here presented prove the suitability of using inertial technology
for the development of an alternative pointing device—and pointing algorithms—based
on movements of the head for individuals with CP and severely limited manipulation
skills and new rehabilitation therapies for the improvement of posture and balance. All
the contributions were validated in collaboration with several centres specialized in CP
and similar disorders and users with disability recruited in those centres.La parálisis cerebral (PC) es una de las deficiencias más limitantes de la infancia, con
un incidencia de 2.2 casos por cada 1000 supervivientes tras un año de vida. La PC
se manifiesta principalmente como una alteración del movimiento y la postura y es
consecuencia de un defecto o lesión en el cerebro inmaduro durante el embarazo o el
parto. Las limitaciones motrices suelen aparecer además en compañía de alteraciones
sensoriales y cognitivas, lo que provoca por lo general grandes dificultades de movilidad,
de manipulación, de relación y de interacción con el entorno.
En las últimas décadas, el ordenador personal se ha extendido como herramienta para la
compensación de parte de estas limitaciones motoras y como medio de promoción de la
neuroplasticidad, especialmente durante la infancia. Desafortunadamente, cerca de un
65% de las personas PC que son diagnosticadas con limitaciones severas de manipulación
son incapaces de utilizar ratones o teclados convencionales. A veces, ni siquiera la
tecnología asistencial les resulta de utilidad ya que se encuentran con impedimentos que
hacen que opten por usar dispositivos tradicionales aun sin dominar su manejo. Para
estas personas, los desarrollos recientes de ratones operados a través de movimientos
residuales con la cabeza o la mirada podrían ser una solución válida, siempre y cuando
se personalice su manejo.
Esta tesis presenta un conjunto de novedosas funciones de mapeo y algoritmos de facilitaci
ón que se han propuesto y diseñado con el ánimo de ayudar a personas con PC
en las tareas de apuntamiento de objetos en la pantalla —las más elementales dentro
de la interacción con el ordenador. Aunque todas las contribuciones se evaluaron con
la interfaz inercial ENLAZA, desarrollada igualmente en nuestro grupo, podrían ser
aplicadas a cualquier ratón basado en movimientos de cabeza. El desarrollo de los
trabajos se resume en las siguientes tareas abordadas:
Desarrollo de una metodología para la evaluación de la habilidad de usuarios con
PC en tareas de apuntamiento, que se contemplan como el encadenamiento de dos
sub-tareas: navegación (alcance) y selección (clic).
Identificación de los tipos de alteraciones motrices presentes en individuos con PC
y el grado de ajuste de éstos a modelos estándares de comportamiento motriz como
puede ser la ley de Fitts.
Propuesta y validación de tres técnicas de facilitación del alcance para ser implementadas
en un ratón basado en movimientos de cabeza. La facilitación se ha centrado
en personas que presentan debilidad muscular y dificultades para mantener
la posición de la cabeza. Mientras que los dos primeros algoritmos se centraron
en facilitar la navegación, el tercero tuvo como objetivo ayudar en la selección a
través de una técnica basada en pozos gravitatorios de proximidad.
En paralelo al desarrollo de estos algoritmos de facilitación de la interacción, evaluamos
la posibilidad de utilizar tecnología inercial para el control de videojuegos en
rehabilitación. Nuestra validación experimental demostró que este concepto puede
implementarse en la práctica clínica como complemento a terapias tradicionales de
rehabilitación de la postura y el equilibrio.
Como conclusión, los trabajos desarrollados en esta tesis vienen a constatar la idoneidad
de utilizar sensores inerciales para el desarrollo de interfaces de accesso alternativo al
ordenador basados en movimientos residuales de la cabeza para personas con limitaciones
severas de manipulación. Esta solución se complementa con algoritmos de facilitación
del alcance. Por otra parte, estas soluciones tecnológicas de interfaz con el ordenador
representan igualmente un complemento de terapias tradicionales de rehabilitación de
la postura y el equilibrio. Todas las contribuciones se validaron en colaboración con
una serie de centros especializados en parálisis cerebral y trastornos afines contando con
usuarios con discapacidad reclutados en dichos centros.This thesis was completed in the Group of Neural and Cognitive Engineering (gNEC) of the CAR UPM-CSIC with the financial support of the FP7 Framework EU Research Project ABC (EU-2012-287774), the IVANPACE Project (funded by Obra Social de Caja Cantabria, 2012-2013), and the Spanish Ministry of Economy and Competitiveness in the framework of two projects: the Interplay Project (RTC-2014-1812-1) and most
recently the InterAAC Project (RTC-2015-4327-1)Programa Oficial de Doctorado en Ingeniería Eléctrica, Electrónica y AutomáticaPresidente: Juan Manuel Belda Lois.- Secretario: María Dolores Blanco Rojas.- Vocal: Luis Fernando Sánchez Sante
Impacts of electronic invoicing in the portuguese healthcare sector: potential savings on accounts payable
The manual processes for exchanging commercial and financial documents between an entity
and its suppliers create inefficiencies in the supply chain. However, there are electronic
solutions able to eliminate errors and decrease the costs in accounting departments.
This work aims to study the potential savings of migrating from manual to electronic invoicing
process in accounts payable operations, on the Portuguese healthcare system. Besides invoices,
other commercial documents are taking into account during this process: purchase orders and
transport guides. There are considered three suppliers’ types: medicines and medical devices,
utilities and services. The study includes seven healthcare entities belonging to Portuguese
Health Service (Centro Hospitalar de Lisboa Central, Centro Hospitalar de Lisboa Norte,
Centro Hospitalar de Lisboa Ocidental, Centro Hospitalar do Porto, Hospital Professor Doutor
Fernando Fonseca, Centro Hospitalar de Trás-os-Montes e Alto Douto) and two service
providers (Indra and Saphety). Data was collected by two different questionnaires, sent by
electronic mail to each entity.
In order to migrate to an electronic process for receiving invoices, it is needed an Electronic
Data Interchange technology. The results show that the Ministry of Health is able to save around
€2,435,249, considering the seven entities, in the first year of implementation. In a horizon of
three years, the potential savings are €8,435,249. In addition, the usage of electronic data
interchange allows the Ministry of Health to use a business intelligence technology and create
policies with a higher degree of accuracy.O processo manual de troca de documentos comerciais e financeiros, entre empresas e os seus fornecedores, cria ineficiências na cadeia de abastecimento. No entanto, existem soluções eletrónicas capazes de eliminar erros e diminuir custos nos departamentos de contabilidade.
Este trabalho tem como objetivo o estudo da potencial poupança originada pela migração do sistema de faturação manual para o eletrónico, nas contas a pagar do sistema de saúde português. Além das faturas, são tidos em conta outros documentos comerciais: as ordens de encomenda e as guias de transporte. São considerados três tipos de fornecedores: medicamentos e dispositivos médicos, utilities e serviços. O estudo inclui sete entidades de saúde pertencentes ao Sistema Nacional de Saúde (Centro Hospitalar de Lisboa Central, Centro Hospitalar de Lisboa Norte, Centro Hospitalar de Lisboa Ocidental, Centro Hospitalar do Porto, Hospital
Professor Doutor Fernando Fonseca, Centro Hospitalar de Trás-os-Montes e Alto Douto) e dois prestadores de serviços (Indra e Saphety). Os dados foram recolhidos através de dois questionários diferentes, enviados, por correio eletrónico, para cada entidade.
De forma a migrar para um processo eletrónico na receção de faturas, é necessária a tecnologia electronic data interchange. Os resultados mostram que o Ministério da Saúde é capaz de poupar cerca de 2.435.249€, considerando as sete entidades, no primeiro ano de implementação.
Num horizonte de três anos, as potenciais poupanças são 8.435.249€. Para além disso, a utilização de electronic data interchange permite ao Ministério da Saúde o uso da tecnologia
business intelligence e criar políticas com maior grau de precisão
Measuring physiotherapy outcomes in chronic low back pain: Moving forward to a patient-centred approach
ABSTRACT - Background
Chronic low back pain (CLBP) is a common health condition worldwide affecting multiple domains of people's health and life. The management of CLBP has now a greater emphasis on conservative interventions, such as physiotherapy treatments, and a growing research effort has been undertaken to analyse their effectiveness. Ensuring the integration of the patient’s perspective in the measurement of health outcomes is a critical element for effectiveness research and it has become increasingly important in the current patient-centred healthcare paradigm. In particular, the assessment of meaningful outcome domains for patients is now an essential requirement for the adequate outcomes measurement of health interventions. However, growing evidence has suggested that the outcome domains measured in research are not fully aligned with the patients' perspective.
Purpose
The aim of this thesis was to analyse the relationship between the outcome domains used in research and the perception of patients with CLBP about physiotherapy outcomes, contributing to reinforce the patient’s role in the physiotherapy outcomes measurement.
Materials and Methods
To achieve this purpose, five studies were developed: 1) The first systematically analysed how the outcomes are being measured in physiotherapy research; 2) The second focused on the cultural adaptation and the psychometric properties analysis of a measure representative of the patient's perception of improvement; 3) The third and fourth analysed the relationship between pain intensity and functional disability domains and the patient's perception; 4) The fifth explored the relevant outcome domains for patients undergoing physiotherapy.
Results
A wide variety of outcome domains are used to determine the physiotherapy effectiveness in patients with CLBP, but poor compliance with a biopsychosocial framework was found. Pain intensity and disability are widely used, while other outcome domains covering the psychological and social health areas are rarely used in the physiotherapy research. However, pain intensity and disability changes during physiotherapy treatment were not sufficient to capture the set of outcomes as perceived by patients, explaining only partially the global patients’ perception of improvement. In addition, the most used pain and disability cut-off values showed a poor ability to identify patients with CLBP who perceived a meaningful improvement after physiotherapy treatment. Patients with CLBP undergoing physiotherapy perceived gains in multiple health domains that ranged beyond those of pain and disability, such as “reducing medication intake”, “improving sleep quality”, “ability to self-manage” and “sense of well-being and normality”.
Conclusions
This thesis contributed to understanding the present gap between the outcome domains used in physiotherapy research and the patients' perspective. Current outcome measurement in physiotherapy research is incomplete and partially covers the set of outcomes perceived as meaningful by patients with CLBP. The outcome measurement model for physiotherapy treatments needs to be rethought and probably expanded to reflect the set of outcome domains valued by patients.RESUMO - Introdução
A dor lombar crónica (DLC) é uma condição de saúde comum a nível global que afeta vários domínios da saúde e vida das pessoas. O tratamento da DLC tem agora maior ênfase nas intervenções conservadores, como os tratamentos de fisioterapia, e um esforço crescente de investigação tem sido realizado para analisar a sua efetividade. Garantir a integração da perspetiva do paciente na avaliação de resultados de saúde é um aspeto fundamental na investigação de efetividade e tornou-se cada vez mais importante no atual paradigma de cuidados de saúde centrados no paciente. Em particular, a avaliação de domínios de resultados relevantes para os pacientes é agora uma condição essencial para uma adequada mensuração dos resultados das intervenções de saúde. Contudo, evidência crescente tem sugerido que os domínios de resultado mensurados na investigação não estão completamente alinhados com a perspetiva do paciente.
Objetivo
O objetivo desta tese foi analisar a relação entre os domínios de resultado utilizados na investigação e a perceção dos pacientes com DLC sobre os resultados da fisioterapia, contribuindo para reforçar o papel do paciente na mensuração dos resultados da fisioterapia.
Materiais e Métodos
Para concretizar este objetivo, foram desenvolvidos 5 estudos: 1) O primeiro analisou sistematicamente a forma como os resultados da fisioterapia têm sido mensurados na investigação; 2) O segundo centrou-se na adaptação cultural e análise das propriedades psicométricas de um instrumento de medida representativo da perceção de melhoria dos pacientes; 3) O terceiro e o quarto analisaram as relações entre os domínios da intensidade da dor e incapacidade, e a perceção de melhoria dos pacientes; 4) O quinto explorou os domínios de resultados relevantes para os pacientes sujeitos a fisioterapia.
Resultados
A efetividade da fisioterapia em pacientes com DLC é determinada através de uma ampla variedade de domínios de resultados, contudo foi encontrada uma baixa concordância com um quadro conceptual biopsicossocial. A intensidade da dor e incapacidade são amplamente utilizados enquanto outros domínios de resultados abrangendo as áreas de saúde psicológica e social são raramente utilizados na investigação de fisioterapia. Porém, as mudanças na intensidade da dor e incapacidade durante o tratamento de fisioterapia não mostraram ser suficientes para captar o conjunto de resultados tal como percecionados pelos pacientes, explicando apenas parcialmente a perceção global de melhoria. Para além disso, os valores de corte mais usados para a dor e incapacidade mostraram uma baixa capacidade em identificar os pacientes com DLC que percecionaram uma melhoria significativa após o tratamento de fisioterapia. Os pacientes com DLC sujeitos a fisioterapia percecionam ganhos em vários domínios de saúde para além dos domínios da dor e incapacidade, tais como “redução da toma de medicação”, “melhoria da qualidade do sono”, “capacidade de autogestão” e “sensação de bem-estar e normalidade”.
Conclusões
Esta tese contribuiu para compreender a lacuna existente entre os domínios de resultados usados na investigação de fisioterapia e a perspetiva dos pacientes. A atual mensuração de resultados na investigação de fisioterapia é incompleta e abrange parcialmente o conjunto de resultados percecionados como importantes pelos pacientes com DLC. O modelo de mensuração de resultados para os tratamentos de fisioterapia precisa de ser repensado e provavelmente expandido de forma a refletir o conjunto de domínios de resultados valorizados pelos pacientes
Surveillance of Cerebral Palsy in Europe: Development of the JRC-SCPE Central Database and Public Health Indicators
The Surveillance of Cerebral Palsy in Europe (SCPE) network was established in 1998, bringing together professionals and researchers working in population-based registries of children with Cerebral Palsy (CP) across Europe. The aims of the network are to collect population data on CP to inform and improve understanding of the disease, to raise standards of care for children with CP, disseminate knowledge for patients, health care professionals and key stakeholders, and to provide a framework for collaborative research.
In 2016, to provide sustainability for this very important network, the SCPE Central Registry and European level coordination activities were transferred to the JRC and became part of the European Platform for Rare Diseases Registration. The SCPE Central Database is annually updated with new cases submitted by the SCPE Registries.
In line with the mission of the JRC for providing evidence-based policy support, and in order to extend the use of the SCPE Central database to public health relevant outputs, the JRC-SCPE Central Registry launched the initiative of developing public health indicators. The public health indicators have been developed by based on collaboration between the JRC and the University Hospital of Toulouse. The input for the calculations of these indicators is based on data included in the standard SCPE dataset and collected annually by the registries in the JRC-SCPE Central Database.
The current report describes the development of the JRC-SCPE Central Database after the transfer from the University of Grenoble, and the definition of a first set of key health indicators.JRC.F.1-Health in Societ
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