Process of caring for patients with spinal-cord injury: case management as a strategy of hospital discharge

This study aimed at understanding the process of discharge from hospital of patients with spinal-cord injury according to health professional teams. The research was conducted considering the process of discharge from hospital of patients with spinal-cord injury introducing case management, which is a modality of service that puts one professional in charge of the integral healthcare of patients. Through a qualitative analysis the study was conducted with health professionals from the Emergency Department, Surgery Clinic and Orthopedics Clinic of Ribeirão Preto Emergency Hospital (UE). Semi-structured interviews were used as a technique to collect data during April, 2000, with 3 physicians, 1 physical therapist, 2 social workers, 1 dietician, 5 nurses, 2 nursing technicans and 3 nursing auxiliaries. The thematic units of the research comprised: characterization of the care given to patients with spinal-cord injury during hospital stay; needs or problems of patients with spinal-cord injury; problems or difficulties in caring for patients with spinal-cord injury; preparation for discharge: what is real and what is ideal.Este estudo tem como objeto conhecer como se realiza a assistência ao paciente com lesão medular, segundo a percepção da equipe de saúde. O eixo norteador do trabalho é compreender o processo da alta hospitalar do paciente com lesão medular e trazer, como proposta de organização, o Gerenciamento de Caso, que é uma modalidade de prestação de serviço, responsabilizando um profissional pelo total cuidado de saúde do paciente. Através de uma abordagem qualitativa, o estudo foi desenvolvido na Sala de Trauma e Urgências, Clínica Cirúrgica e Ortopedia de um hospital de nível terciário. Foi utilizada a entrevista semi-estruturada como técnica de coleta de dados. Participaram do estudo três médicos, um fisioterapeuta, dois assistentes sociais, um nutricionista, cinco enfermeiros, dois técnicos e três auxiliares de enfermagem que prestam assistência ao paciente com lesão medular. Os dados foram coletados durante os meses de abril e maio de 2000 e analisados pelo método de análise de conteúdo, através da análise temática. Identificaram-se como unidades temáticas, caraterização da assistência ao paciente com lesão medular durante a internação; necessidades ou problemas do  paciente com lesão medular; problemas ou dificuldades na assistência ao paciente com lesão medular e preparo da alta: o real e o ideal

Health services performance for TB treatment in Brazil: a cross-sectional study

<p>Abstract</p> <p>Background</p> <p>Researches to evaluate Primary Health Care performance in TB control in Brazil show that different cities aggregate local specificities in the dynamics of coping with the disease. This study aims to evaluate health services' performance in TB treatment in cities across different Brazilian regions.</p> <p>Methods</p> <p>This cross-sectional study was conducted in five cities that are considered priorities for TB control in Brazil: Itaboraí (ITA), Ribeirão Preto (RP) and São José do Rio Preto (SJRP) in the Southeast; Campina Grande (CG) and Feira de Santana (FS) in the Northeast. Data were collected through interviews with 514 TB patients under treatment in 2007, using the <it>Primary Care Assessment Tool </it>adapted for TB care in Brazil. Indicators were constructed based on the mean response scores (Likert scale) and compared among the study sites.</p> <p>Results</p> <p>"Access to treatment" was evaluated as satisfactory in the Southeast and regular in the Northeast, which displayed poor results on 'home visits' and 'distance between treatment site and patient's house'. "Bond" was assessed as satisfactory in all cities, with a slightly better performance in RP and SJRP. "Range of services" was rated as regular, with better performance of southeastern cities. 'Health education', 'DOT' and 'food vouchers' were less offered in the Northeast. "Coordination" was evaluated as satisfactory in all cities. "Family focus" was evaluated as satisfactory in RP and SJRP, and regular in the others. 'Professional asking patient's family about other health problems' was evaluated as unsatisfactory, except in RP.</p> <p>Conclusions</p> <p>Two types of obstacles are faced for health service performance in TB treatment in the cities under analysis, mainly in the Northeast. The first is structural and derives from difficulties to access health services and actions. The second is organizational and derives from the way health technologies and services are distributed and integrated. Incentives to improve care organization and management practices, aimed at the integration of primary, secondary and tertiary services, can contribute towards a better performance of health services in TB treatment.</p

The European Reference Genome Atlas: piloting a decentralised approach to equitable biodiversity genomics.

ABSTRACT: A global genome database of all of Earth’s species diversity could be a treasure trove of scientific discoveries. However, regardless of the major advances in genome sequencing technologies, only a tiny fraction of species have genomic information available. To contribute to a more complete planetary genomic database, scientists and institutions across the world have united under the Earth BioGenome Project (EBP), which plans to sequence and assemble high-quality reference genomes for all ∼1.5 million recognized eukaryotic species through a stepwise phased approach. As the initiative transitions into Phase II, where 150,000 species are to be sequenced in just four years, worldwide participation in the project will be fundamental to success. As the European node of the EBP, the European Reference Genome Atlas (ERGA) seeks to implement a new decentralised, accessible, equitable and inclusive model for producing high-quality reference genomes, which will inform EBP as it scales. To embark on this mission, ERGA launched a Pilot Project to establish a network across Europe to develop and test the first infrastructure of its kind for the coordinated and distributed reference genome production on 98 European eukaryotic species from sample providers across 33 European countries. Here we outline the process and challenges faced during the development of a pilot infrastructure for the production of reference genome resources, and explore the effectiveness of this approach in terms of high-quality reference genome production, considering also equity and inclusion. The outcomes and lessons learned during this pilot provide a solid foundation for ERGA while offering key learnings to other transnational and national genomic resource projects.info:eu-repo/semantics/publishedVersio

Identification of genetic variants associated with Huntington's disease progression: a genome-wide association study

Background Huntington's disease is caused by a CAG repeat expansion in the huntingtin gene, HTT. Age at onset has been used as a quantitative phenotype in genetic analysis looking for Huntington's disease modifiers, but is hard to define and not always available. Therefore, we aimed to generate a novel measure of disease progression and to identify genetic markers associated with this progression measure. Methods We generated a progression score on the basis of principal component analysis of prospectively acquired longitudinal changes in motor, cognitive, and imaging measures in the 218 indivduals in the TRACK-HD cohort of Huntington's disease gene mutation carriers (data collected 2008–11). We generated a parallel progression score using data from 1773 previously genotyped participants from the European Huntington's Disease Network REGISTRY study of Huntington's disease mutation carriers (data collected 2003–13). We did a genome-wide association analyses in terms of progression for 216 TRACK-HD participants and 1773 REGISTRY participants, then a meta-analysis of these results was undertaken. Findings Longitudinal motor, cognitive, and imaging scores were correlated with each other in TRACK-HD participants, justifying use of a single, cross-domain measure of disease progression in both studies. The TRACK-HD and REGISTRY progression measures were correlated with each other (r=0·674), and with age at onset (TRACK-HD, r=0·315; REGISTRY, r=0·234). The meta-analysis of progression in TRACK-HD and REGISTRY gave a genome-wide significant signal (p=1·12 × 10−10) on chromosome 5 spanning three genes: MSH3, DHFR, and MTRNR2L2. The genes in this locus were associated with progression in TRACK-HD (MSH3 p=2·94 × 10−8 DHFR p=8·37 × 10−7 MTRNR2L2 p=2·15 × 10−9) and to a lesser extent in REGISTRY (MSH3 p=9·36 × 10−4 DHFR p=8·45 × 10−4 MTRNR2L2 p=1·20 × 10−3). The lead single nucleotide polymorphism (SNP) in TRACK-HD (rs557874766) was genome-wide significant in the meta-analysis (p=1·58 × 10−8), and encodes an aminoacid change (Pro67Ala) in MSH3. In TRACK-HD, each copy of the minor allele at this SNP was associated with a 0·4 units per year (95% CI 0·16–0·66) reduction in the rate of change of the Unified Huntington's Disease Rating Scale (UHDRS) Total Motor Score, and a reduction of 0·12 units per year (95% CI 0·06–0·18) in the rate of change of UHDRS Total Functional Capacity score. These associations remained significant after adjusting for age of onset. Interpretation The multidomain progression measure in TRACK-HD was associated with a functional variant that was genome-wide significant in our meta-analysis. The association in only 216 participants implies that the progression measure is a sensitive reflection of disease burden, that the effect size at this locus is large, or both. Knockout of Msh3 reduces somatic expansion in Huntington's disease mouse models, suggesting this mechanism as an area for future therapeutic investigation