Engaging citizens living in vulnerable circumstances in research: a narrative review using a systematic search.
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ABSTRACT:
SUBMITTER: Goedhart NS
PROVIDER: S-EPMC8414765 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:The Research Domain Criteria (RDoC) initiative was implemented to reorient the approach to mental health research from one focused on Diagnostic and Statistical Manual of Mental Disorders (DSM) nosology to one oriented to psychological constructs constrained by neurocircuitry and molecular entities. The initiative has generated significant discussion and valuable reflection on the moorings of psychiatric research. The purpose of this article is to illustrate how a basic or clinical investigator can engage RDoC to explore the neurobiological underpinnings of psychopathology and how a research question can be formulated in RDoC's framework. We utilize a brain region with significant growing interest, the habenula, as an example for probing RDoC's utility. Opportunities to enhance neurocircuitry-psychological construct associations and problems associated with neuronal populations that enable bidirectional circuitry influence are discussed. The exercise reveals areas for further development that could move RDoC from a promising research idea to a successfully engaged foundation for catalyzing clinically relevant discoveries.
| S-EPMC4988756 | biostudies-literature
Project description:BACKGROUND: Patients with rare diseases have limited access to useful information to guide treatment decisions. Engagement of patients and other stakeholders in clinical research may help to ensure that research efforts in rare diseases address relevant clinical questions and patient-centered health outcomes. Rare disease organizations may provide an effective means to facilitate patient engagement in research. However, the effectiveness of patient-engagement approaches, particularly for the study of rare diseases, has not been well studied. OBJECTIVES: To synthesize evidence about engagement of patients and other stakeholders in research on rare diseases, including the role of rare disease organizations in facilitating patient-centered research. METHODS/RESEARCH DESIGN: A systematic review and gray literature search were guided by a technical expert panel composed of patient representatives, clinicians, and researchers. English-language studies that engaged patients or other stakeholders in research on rare diseases or evaluated engagement were included. Studies were assessed on how well key research questions were answered, based on the level of detail describing engagement activities and whether outcomes from engagement were assessed. RESULTS: Thirty-five studies were included, although many reported minimal information on engagement. Patients and other stakeholders were most commonly engaged to identify patient-centered research agendas, to select which study outcomes were important to patients, to provide input on study design, and to identify strategies for increasing enrollment in trials. Rare disease organizations mainly helped provide access to patients and communicated research opportunities and findings. They also helped promote collaborative networks and provided financial support for research infrastructures. Although authors reported benefits of engagement and identified changes to their research processes, no empirical assessments of engagement practices and their effectiveness were found. CONCLUSIONS: Researchers studying rare diseases can obtain patient input regarding which research questions and health outcomes to study; however, the most effective approaches to engagement have not been well defined.
| S-EPMC4124116 | biostudies-other
Project description:BackgroundHow best to prioritise COVID-19 vaccination within and between countries has been a public health and an ethical challenge for decision-makers globally. We reviewed epidemiological and economic modelling evidence on population priority groups to minimise COVID-19 mortality, transmission, and morbidity outcomes.MethodsWe searched the National Institute of Health iSearch COVID-19 Portfolio (a database of peer-reviewed and pre-print articles), Econlit, the Centre for Economic Policy Research, and the National Bureau of Economic Research for mathematical modelling studies evaluating the impact of prioritising COVID-19 vaccination to population target groups. The first search was conducted on March 3, 2021, and an updated search on the LMIC literature was conducted from March 3, 2021, to September 24, 2021. We narratively synthesised the main study conclusions on prioritisation and the conditions under which the conclusions changed.ResultsThe initial search identified 1820 studies and 36 studies met the inclusion criteria. The updated search on LMIC literature identified 7 more studies. 43 studies in total were narratively synthesised. 74% of studies described outcomes in high-income countries (single and multi-country). We found that for countries seeking to minimise deaths, prioritising vaccination of senior adults was the optimal strategy and for countries seeking to minimise cases the young were prioritised. There were several exceptions to the main conclusion, notably that reductions in deaths could be increased if groups at high risk of both transmission and death could be further identified. Findings were also sensitive to the level of vaccine coverage.ConclusionThe evidence supports WHO SAGE recommendations on COVID-19 vaccine prioritisation. There is, however, an evidence gap on optimal prioritisation for low- and middle-income countries, studies that included an economic evaluation, and studies that explore prioritisation strategies if the aim is to reduce overall health burden including morbidity.
| S-EPMC8632563 | biostudies-literature
Project description:IntroductionAlthough bDMARDs are effective in the treatment of RA, they are associated with dose-dependent side effects, patient burden, and high costs. Recently, many studies have investigated the possibility of discontinuing or tapering bDMARDs when patients have reached their treatment goal. The aim of this review is to provide a narrative overview of the existing evidence on bDMARD dose reduction and to provide answers to specific dose-reduction-related questions that are of interest to clinicians.MethodsWe systematically searched for relevant studies in four scientific databases. Furthermore, we screened the references of reviews and relevant studies.ResultsOur searches resulted in 45 original studies of bDMARD dose reduction in RA patients (15 RCTs and 30 observational studies). Current evidence shows that bDMARD dose reduction can be considered in all RA patients who achieve stable (e.g., ≥6 months) low disease activity or remission. The best strategies seem to be disease-activity-guided dose optimization and fixed dose reduction, since direct bDMARD discontinuation (without restarting) results in a high flare rate, worse physical functioning, and more joint damage. When tapering the bDMARD treatment of a patient, disease activity should be monitored closely, and if a flare occurs, the dose should be increased to the lowest effective dose. Current evidence shows that restarting bDMARD treatment is effective and safe. Unfortunately, no clear predictors of successful dose reduction have been identified so far.ConclusionThe current evidence and rising healthcare costs urge that dose reduction should be considered for eligible patients. However, the decision to start dose reduction should be made in shared decision-making. Future research should focus not only on a better understanding of the effects of dose reduction on clinical outcomes but also on the perspectives of patients and physicians as well as the implementation of this new treatment principle.
| S-EPMC5443724 | biostudies-literature
Project description:Background and Aims. The lived experience of HCV has not been well documented in the literature. The aim of this systematic review was to understand the experiences of living with Hepatitis C Virus (HCV). Methods. Five databases were searched from inception until January 19, 2015. Studies were included if they focused on adults diagnosed with HCV; reported experience living with HCV; and described original research. Results. 46 studies were included. Studies found that participants had reduced quality of life due to physical symptoms. Due to physical symptoms and discrimination, many participants switched to part-time work or quit their jobs. Many individuals reported negative experiences with the healthcare system; themes of feeling unsupported, not having adequate information, and not feeling involved in decisions were reported. Stigma significantly impacted those living with HCV. Conclusions. Published literature indicates that those with HCV often feel stigmatized and unsupported in their care, relationships, and work environments, while simultaneously coping with physical and psychological symptoms. This synthesis points to areas where greater education, compassion, and patient-centered healthcare could improve the experience of people living with HCV.
| S-EPMC5424189 | biostudies-literature
Project description:ObjectiveThe concept of living with and beyond cancer is now emerging in policy and literature. Rather than viewing this notion simply as a linear timeline, developing an agreed understanding of the lived experience of people affected by cancer will aid the development of person-centred models of care.MethodsA systematic review was conducted. The review question was "What does the term 'living with and beyond cancer' mean to people affected by cancer?" The protocol for the review was preregistered in the PROSPERO database (PROSPERO CRD42017059860). All included studies were qualitative, so narrative synthesis was used to integrate descriptions and definitions of living with and beyond cancer into an empirically based conceptual framework.ResultsOut of 2345 papers that were identified and 180 that were reviewed, a total of 73 papers were included. The synthesis yielded three interlinked themes: Adversity (realising cancer), Restoration (readjusting life with cancer), and Compatibility (reconciling cancer), resulting in the ARC framework.ConclusionsThree themes describe the experience of living with and beyond cancer: adversity, restoration, and compatibility. The ARC framework provides an empirically informed grounding for future research and practice in supportive cancer care for this population.
| S-EPMC6594071 | biostudies-literature
Project description:The incidence of strain injuries continues to be high in many popular sports, especially hamstring strain injuries in football, despite a documented important effect of eccentric exercise to prevent strains. Studies investigating the anatomical properties of these injuries in humans are sparse. The majority of strains are seen at the interface between muscle fibers and tendon: the myotendinous junction (MTJ). It has a unique morphology with a highly folded muscle membrane filled with invaginations of collagen fibrils from the tendon, establishing an increased area of force transmission between muscle and tendon. There is a very high rate of remodeling of the muscle cells approaching the MTJ, but little is known about how the tissue adapts to exercise and which structural changes heavy eccentric exercise may introduce. This review summarizes the current knowledge about the anatomy, composition and adaptability of the MTJ, and discusses reasons why strain injuries can be prevented by eccentric exercise.
| S-EPMC8032995 | biostudies-literature
Project description:Structural adjustment programmes of international financial institutions have typically set the fiscal parameters within which health policies operate in developing countries. Yet, we currently lack a systematic understanding of the ways in which these programmes impact upon child and maternal health. The present article systematically reviews observational and quasi-experimental articles published from 2000 onward in electronic databases (PubMed/Medline, Web of Science, Cochrane Library and Google Scholar) and grey literature from websites of key organisations (IMF, World Bank and African Development Bank). Studies were considered eligible if they empirically assessed the aggregate effect of structural adjustment programmes on child or maternal health in developing countries. Of 1961 items yielded through database searches, reference lists and organisations' websites, 13 met the inclusion criteria. Our review finds that structural adjustment programmes have a detrimental impact on child and maternal health. In particular, these programmes undermine access to quality and affordable healthcare and adversely impact upon social determinants of health, such as income and food availability. The evidence suggests that a fundamental rethinking is required by international financial institutions if developing countries are to achieve the Sustainable Development Goals on child and maternal health.
| S-EPMC5810102 | biostudies-literature
Project description:Background: Global health policy recommends exclusive breastfeeding until infants are 6?months. Little is known about the cost-effectiveness of breastfeeding promotion strategies. This paper presents a systematic search and narrative review of economic evaluations of strategies to support or promote breastfeeding. The aim of the review is to bring together current knowledge to guide researchers and commissioners towards potentially cost-effective strategies to promote or support breastfeeding.Methods: Searches were conducted of electronic databases, including MEDLINE and Scopus, for economic evaluations relevant to breastfeeding, published up to August 2019. Records were screened against pre-specified inclusion/exclusion criteria and quality was assessed using a published checklist. Costs reported in included studies underwent currency conversion and inflation to a single year and currency so that they could be compared. The review protocol was registered on the PROSPERO register of literature reviews (ID, CRD42019141721).Results: There were 212 non-duplicate citations. Four were included in the review, which generally indicated that interventions were cost-effective. Two studies reported that breastfeeding promotion for low-birth weight babies in critical care is associated with lower costs and greater health benefits than usual care and so is likely to be cost-effective. Peer-support for breastfeeding was associated with longer duration of exclusivity with costs ranging from £19-£107 per additional month (two studies).Conclusions: There is limited published evidence on the cost-effectiveness of strategies to promote breastfeeding, although the quality of the current evidence is reasonably high. Future studies should integrate evaluations of the effectiveness of strategies with economic analyses.
| S-EPMC7712610 | biostudies-literature
Project description:Despite the fact that millions of individuals living in the United States are coping with disabilities associated with traumatic brain injury (TBI), limited work has explored strategies for patient engagement in research among those with such injuries. The Coalition for Recovery and Innovation in Traumatic Brain Injury Care Across the Lifespan (CRITICAL) brought together those living with TBI, caregivers, clinicians, researchers, and advocates with the goal of developing a new patient-centered research agenda. This platform was also used to explore strategies to engage those with moderate to severe TBI in the research process. The CRITICAL was formed of 6 survivors of moderate to severe TBI, 2 caregivers of survivors of moderate to severe TBI, and 8 TBI professionals. The CRITICAL identified 3 priority topic areas: Relationship Quality, Caregiver Needs, and Thriving. Furthermore, strategies associated with Communication, Preparation, and the Environment facilitated research engagement. Employing the strategies outlined in this article is expected to promote patient engagement in clinical research, which can improve patient-centered interventions and outcomes for individuals living with TBI.
| S-EPMC8205400 | biostudies-literature