Implementing patient reported outcome measures (PROMs) in palliative care - users' cry for help

<p>Abstract</p> <p>Background</p> <p>Patient-reported outcome measurement (PROM) plays an increasingly important role in palliative care. A variety of measures exists and is used in clinical care, audit and research. However, little is known about professionals' views using these measures. The aim of this study is to describe the use and experiences of palliative care professionals with outcome measures.</p> <p>Methods</p> <p>A web-based online survey was conducted in Europe and Africa. Professionals working in clinical care, audit and research in palliative care were invited to the survey via national palliative care associations and various databases. Invitation e-mails were sent with a link to the questionnaire.</p> <p>Results</p> <p>Overall participation rate 42% (663/1592), overall completion rate 59% (392/663). The majority of respondents were female (63.4%), mean age 46 years (SD 9). 68.1% respondents from Europe and 73.3% from Africa had experiences with outcome measures in palliative care. Non-users reported time constraints, burden, lack of training and guidance as main reasons. In clinical care/audit, assessment of patients' situation, monitoring changes and evaluation of services were main reasons for use. Choice of OMs for research was influenced by validity of the instrument in palliative care and comparability with international literature. Main problems were related to patient characteristics, staff, and outcome measures. Participants expressed the need for more guidance and training in the use of PROMs.</p> <p>Conclusions</p> <p>Professionals need more support for the use and implementation of PROMs in clinical practice and research through training and guidance in order to improve patient care.</p

Administration and Probate Act Amendment Act, 1970, No. 4

Context. As the European population ages and the number of cancer deaths annually increases, there is an urgent requirement to provide high-quality, effective care. The measurement of outcomes in advanced disease is complex, and to conduct comparative research and meta-analyses, appropriate tool selection is essential. Objectives. This study aimed to identify the outcome tools currently in use in end-of-life care (both clinically and for research) across Europe and investigate the preferred features of outcome tools from the perspective of those who select and apply them. Methods. A pan-European Internet-based survey of tool users was conducted in research and clinical populations. Respondents were asked to identify the tools they are using and describe ideal features of the measures. The study was conducted in accordance with guidance for best practice in web-based research. Results. Of the 311 participants who completed a survey, 99 tools in clinical care and audit, and 94 in research, were cited by less than 10 participants. Further data revealed that respondents require the number of potential tools to be rationalized and that brief tools are favored. Conclusion. The selection of valid and appropriate tools for palliative care populations requires expert guidance and support to ensure that clinicians and researchers are collecting data that have validity and potential for comparison within and between populations and countries. J Pain Symptom Manage 2011;42:493-500. (C) 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved

Evaluating complex interventions in end of life care: the MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews.

BACKGROUND: Despite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. We aimed to develop evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field. METHODS: The Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation. We synthesised all findings to develop a guidance statement on the best methods to research EoLC. RESULTS: We integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project. CONCLUSIONS: The MORECare statement provides 36 best practice solutions for research evaluating services and treatments in EoLC to improve study quality and set the standard for future research. The statement may be used alongside existing statements and provides a first step in setting common, much needed standards for evaluative research in EoLC. These are relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors.RIGHTS : This article is licensed under the BioMed Central licence at http://www.biomedcentral.com/about/license which is similar to the 'Creative Commons Attribution Licence'. In brief you may : copy, distribute, and display the work; make derivative works; or make commercial use of the work - under the following conditions: the original author must be given credit; for any reuse or distribution, it must be made clear to others what the license terms of this work are

Análise da experiência multidisciplinar na construção do livro 3d de embriologia humana

A abordagem do tema sobre o desenvolvimento humano requer uma maior abstração do estudante no que concerne a compreensão e visualização tridimensional dos diversos estágios embrionário e fetal. Isso requer a utilização de novos recursos didáticos ou ferramentas que os apoiem, principalmente as que não utilizem material humano. O objetivo deste trabalho é relatar a experiência na elaboração do Livro 3D de Embriologia Humana, um projeto multidisciplinar e apresentar o resultado final do projeto. A equipe foi composta por 9 professores e 15 alunos dos cursos de Medicina, Design, Sistemas de Informação, Letras e Comunicação Social do Centro Universitário de Volta Redonda-UniFOA. O conteúdo do livro foi discutido e escolhido para ser escrito pelos alunos do curso de Medicina. A revisão ortográfica e gramatical foi realizada pelos graduandos do curso de Letras. Após a finalização do conteúdo, os colaboradores do curso de Comunicação Social gravaram em estúdio a narração do livro que foi ilustrado pelos alunos dos cursos de Medicina e Design. Ficou sob responsabilidade dos colaboradores dos cursos de Design e Sistemas de Informação a construção do livro e dos objetos tridimensionais. Cada núcleo de alunos, por curso, tinha pelo menos um professor orientador dentro de sua área de conhecimento que revisava e supervisionava as etapas de realização. A maior dificuldade encontrada pela equipe foi a construção dos objetos 3D, que exigiu a interação constante dos alunos do curso de Medicina com os de Design para que as imagens fossem as mais próximas do real e tecnicamente corretas. Outra dificuldade superada pelo grupo foi a terminologia técnica utilizada pelos alunos de Medicina, revisada pelos alunos de Letras e narrados pela equipe de Comunicação Social. Um dos pontos positivos foi a multidisciplinaridade e a construção coletiva. Temas como semiótica e reforma ortográfica tiveram que ser debatidos entre os alunos e professores dos diferentes cursos, tornando o projeto um aprendizado ainda maior para o grupo

Abstracts from the NIHR INVOLVE Conference 2017

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