8 research outputs found
Standardised data on initiatives—STARDIT: Beta version
Background and objective: There is currently no standardised way to share information across disciplines about initiatives, including fields such as health, environment, basic science, manufacturing, media and international development. All problems, including complex global problems such as air pollution and pandemics require reliable data sharing between disciplines in order to respond effectively. Current reporting methods also lack information about the ways in which different people and organisations are involved in initiatives, making it difficult to collate and appraise data about the most effective ways to involve different people. The objective of STARDIT (Standardised Data on Initiatives) is to address current limitations and inconsistencies in sharing data about initiatives. The STARDIT system features standardised data reporting about initiatives, including who has been involved, what tasks they did, and any impacts observed. STARDIT was created to help everyone in the world find and understand information about collective human actions, which are referred to as ‘initiatives’. STARDIT enables multiple categories of data to be reported in a standardised way across disciplines, facilitating appraisal of initiatives and aiding synthesis of evidence for the most effective ways for people to be involved in initiatives. This article outlines progress to date on STARDIT; current usage; information about submitting reports; planned next steps and how anyone can become involved. Method: STARDIT development is guided by participatory action research paradigms, and has been co-created with people from multiple disciplines and countries. Co-authors include cancer patients, people affected by rare diseases, health researchers, environmental researchers, economists, librarians and academic publishers. The co-authors also worked with Indigenous peoples from multiple countries and in partnership with an organisation working with Indigenous Australians. Results and discussion: Over 100 people from multiple disciplines and countries have been involved in co-designing STARDIT since 2019. STARDIT is the first open access web-based data-sharing system which standardises the way that information about initiatives is reported across diverse fields and disciplines, including information about which tasks were done by which stakeholders. STARDIT is designed to work with existing data standards. STARDIT data will be released into the public domain (CC0) and integrated into Wikidata; it works across multiple languages and is both human and machine readable. Reports can be updated throughout the lifetime of an initiative, from planning to evaluation, allowing anyone to be involved in reporting impacts and outcomes. STARDIT is the first system that enables sharing of standardised data about initiatives across disciplines. A working Beta version was publicly released in February 2021 (ScienceforAll.World/STARDIT). Subsequently, STARDIT reports have been created for peer-reviewed research in multiple journals and multiple research projects, demonstrating the usability. In addition, organisations including Cochrane and Australian Genomics have created prospective reports outlining planned initiatives. Conclusions: STARDIT can help create high-quality standardised information on initiatives trying to solve complex multidisciplinary global problems
PRO149 PATIENT ENGAGEMENT IN RESEARCH: THE EURORDIS PATIENT-LED COMMUNITY ADVISORY BOARDS (CABS)
Condições psicológicas para a observação das terapias antiretrovirais altamente ativas (HAART) Condiciones psicológicas para la observación de las terapias antiretrovirales altamente activas (HAART) Psychological conditions for HAART
Esta pesquisa longitudinal estudou a organização psÃquica dos indivÃduos, gestionários de um tratamento complexo, confrontados à s dificuldades da vida cotidiana, durante o primeiro ano de tratamento pela terapia antiretroviral altamente ativa (HAART). O objetivo da pesquisa era o de discriminar os fatores que favorecem e os que perturbam este processo. Constata-se a importância determinante das relações de apoio para confortar a estima de si que dá sentido ao esforço de prosseguir o tratamento.<br>Esta pesquisa longitudinal estudió la organización psÃquica de los individuos, cuestionarios de un tratamiento complejo, confrontados a las dificultades de la vida cotidiana, durante el primer año de tratamiento por la terapia antiretroviral altamente activa (HAART). El objetivo de la pesquisa era discriminar los factores que favorecen y los que perturban este proceso. Se constata la importancia determinante de las relaciones de apoyo para confortar la estima de sà que da sentido al esfuerzo de proseguir el tratamiento.<br>This longitudinal qualitative research studied psychological conditions patients are required to have in order to manage HAART. It intended to discriminate features that contribute and those that hinder this process. It acknowledges the outstanding role of supportive relationships in making patients comply with the treatment
Does a consumer training work? a follow-up survey of the PartecipaSalute training programs
<p>Abstract</p> <p>Background</p> <p>When properly trained through training programs on epidemiology, clinical research and healthcare policy, members of patients’/consumers’ organizations could be helpful for a patient-oriented healthcare system. Since 2006 the not for profit project PartecipaSalute has organized periodic editions of a training program for representatives of citizens’/patients’ organizations. After five editions of this training program, a survey of the long-term satisfaction and the impact on activities has been carried out.</p> <p>Methods</p> <p>A 17-questions follow-up questionnaire has been developed. The sample comprised 99 people who had taken part in at least one program edition.</p> <p>Results</p> <p>The overall response rate was 89% (89 responders/99 participants). About 98% of participants expressed general satisfaction with the training program and with the knowledge gained. Medical and informative topics were rated better than technical ones for their usefulness (96% versus 86%). The results of the survey showed a strong impact of the training course on single participants, while a weak outcome on the activities of the organizations was reported.</p> <p>Conclusions</p> <p>The training program was positively rated, and improvements in personal knowledge were reported. Less impact was reported on organizations’ activities. Participants showed a remarkable willingness to get more involved in healthcare decisions, and to boost their knowledge of health and research issues. The results show the importance of follow-up to understand the real value of training program and to better organize future programs.</p
The influence of foot and back massage on blood pressure and sleep quality in females with essential hypertension: a randomized controlled study
The present study was conducted with the aim of investigating the influence of foot and back massage on blood pressure and sleep quality in females with essential hypertension. Non-pharmacologic methods like massage may be effective for balancing blood pressure and solving sleep problems. This is a randomized controlled study conducted in accordance with CONSORT rules. Females with essential hypertension were applied a total of six sessions of 30 min of foot and back massage twice weekly during 3 weeks. The study included a total of 90 patients of whom 60 were in intervention group (foot massage group, back massage group) and 30 in control group. Data were collected through personal data form (PDF) which included descriptive characteristics, Pittsburgh Sleep Quality Index (PSQI). Six sessions of foot massage and back massage were detected to lead to a reduction in systolic blood pressure (SBP) and diastolic blood pressure (DBP) values and the difference was statistically significant (p < 0.001). A strong statistical difference was found between mean pretest posttest scores of overall and sub-dimensional scores of PSQI in females in intervention group (p < 0.001). Foot and back massage was found to be effective in reducing blood pressure and improving sleep quality
Combination antiretroviral therapy and the risk of myocardial infarction
Background: It remains controversial whether exposure to combination antiretroviral treatment increases the risk of myocardial infarction. Methods: In this prospective observational study, we enrolled 23,468 patients from 11 previously established cohorts from December 1999 to April 2001 and collected follow-up data until February 2002. Data were collected on infection with the human immunodeficiency virus and on risk factors for and the incidence of myocardial infarction. Relative rates were calculated with Poisson regression models. Combination antiretroviral therapy was defined as any combination regimen of antiretroviral drugs that included a protease inhibitor or a nonnucleoside reverse transcriptase inhibitor. Results: Over a period of 36,199 person-years, 126 patients had a myocardial infarction. The incidence of myocardial infarction increased with longer exposure to combination antiretroviral therapy (adjusted relative rate per year of exposure, 1.26 [95 percent confidence interval, 1.12 to 1.41]; P Conclusions: Combination antiretroviral therapy was independently associated with a 26 percent relative increase in the rate of myocardial infarction per year of exposure during the first four to six years of use. However, the absolute risk of myocardial infarction was low and must be balanced against the marked benefits from antiretroviral treatment
Combination antiretroviral therapy and the risk of myocardial infarction RID C-2464-2008 RID B-4427-2008 RID H-3944-2011 RID B-5656-2009 RID E-7045-2010 RID A-1057-2008
Background: It remains controversial whether exposure to combination antiretroviral treatment increases the risk of myocardial infarction. Methods: In this prospective observational study, we enrolled 23,468 patients from 11 previously established cohorts from December 1999 to April 2001 and collected follow-up data until February 2002. Data were collected on infection with the human immunodeficiency virus and on risk factors for and the incidence of myocardial infarction. Relative rates were calculated with Poisson regression models. Combination antiretroviral therapy was defined as any combination regimen of antiretroviral drugs that included a protease inhibitor or a nonnucleoside reverse transcriptase inhibitor. Results: Over a period of 36,199 person-years, 126 patients had a myocardial infarction. The incidence of myocardial infarction increased with longer exposure to combination antiretroviral therapy (adjusted relative rate per year of exposure, 1.26 [95 percent confidence interval, 1.12 to 1.41]; P<0.001). Other factors significantly associated with myocardial infarction were older age, current or former smoking, previous cardiovascular disease, and male sex, but not a family history of coronary heart disease. A higher total serum cholesterol level, a higher triglyceride level, and the presence of diabetes were also associated with an increased incidence of myocardial infarction. Conclusions: Combination antiretroviral therapy was independently associated with a 26 percent relative increase in the rate of myocardial infarction per year of exposure during the first four to six years of use. However, the absolute risk of myocardial infarction was low and must be balanced against the marked benefits from antiretroviral treatment