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Clinical Genetics Dec 2021Exome sequencing (ES) enhanced the diagnostic yield of genetic testing, but has also increased the possibility of uncertain findings. Prenatal ES is increasingly being...
Exome sequencing (ES) enhanced the diagnostic yield of genetic testing, but has also increased the possibility of uncertain findings. Prenatal ES is increasingly being offered after a fetal abnormality is detected through ultrasound. It is important to know how to handle uncertainty in this particularly stressful period. This systematic review aimed to provide a comprehensive overview of guidelines available for addressing uncertainty related to prenatal chromosomal microarray (CMA) and ES. Ten uncertainty types associated with prenatal ES and CMA were identified and defined by an international multidisciplinary team. Medline (all) and Embase were systematically searched. Laboratory scientists, clinical geneticists, psychologists, and a fetal medicine specialist screened the papers and performed the data extraction. Nineteen papers were included. Recommendations generally emphasized the importance of trio analysis, clinical information, data sharing, validation and re-analysis, protocols, multidisciplinary teams, genetic counselling, whether to limit the possible scope of results, and when to report particular findings. This systematic review helps provide a vocabulary for uncertainties, and a compass to navigate uncertainties. Prenatal CMA and ES guidelines provide a strong starting point for determining how to handle uncertainty. Gaps in guidelines and recommendations were identified and discussed to provide direction for future research and policy making.
Topics: Clinical Decision-Making; Disease Management; Female; Genetic Association Studies; Genetic Predisposition to Disease; Genomics; Health Policy; Humans; Practice Guidelines as Topic; Pregnancy; Prenatal Diagnosis; Uncertainty
PubMed: 34155632
DOI: 10.1111/cge.14010 -
Frontiers in Neuroscience 2023Cochlear implants (CIs) are considered an effective treatment for severe-to-profound sensorineural hearing loss. However, speech perception outcomes are highly variable...
BACKGROUND
Cochlear implants (CIs) are considered an effective treatment for severe-to-profound sensorineural hearing loss. However, speech perception outcomes are highly variable among adult CI recipients. Top-down neurocognitive factors have been hypothesized to contribute to this variation that is currently only partly explained by biological and audiological factors. Studies investigating this, use varying methods and observe varying outcomes, and their relevance has yet to be evaluated in a review. Gathering and structuring this evidence in this scoping review provides a clear overview of where this research line currently stands, with the aim of guiding future research.
OBJECTIVE
To understand to which extent different neurocognitive factors influence speech perception in adult CI users with a postlingual onset of hearing loss, by systematically reviewing the literature.
METHODS
A systematic scoping review was performed according to the PRISMA guidelines. Studies investigating the influence of one or more neurocognitive factors on speech perception post-implantation were included. Word and sentence perception in quiet and noise were included as speech perception outcome metrics and six key neurocognitive domains, as defined by the DSM-5, were covered during the literature search (Protocol in open science registries: 10.17605/OSF.IO/Z3G7W of searches in June 2020, April 2022).
RESULTS
From 5,668 retrieved articles, 54 articles were included and grouped into three categories using different measures to relate to speech perception outcomes: (1) Nineteen studies investigating brain activation, (2) Thirty-one investigating performance on cognitive tests, and (3) Eighteen investigating linguistic skills.
CONCLUSION
The use of cognitive functions, recruiting the frontal cortex, the use of visual cues, recruiting the occipital cortex, and the temporal cortex still available for language processing, are beneficial for adult CI users. Cognitive assessments indicate that performance on non-verbal intelligence tasks positively correlated with speech perception outcomes. Performance on auditory or visual working memory, learning, memory and vocabulary tasks were unrelated to speech perception outcomes and performance on the Stroop task not to word perception in quiet. However, there are still many uncertainties regarding the explanation of inconsistent results between papers and more comprehensive studies are needed e.g., including different assessment times, or combining neuroimaging and behavioral measures.
SYSTEMATIC REVIEW REGISTRATION
https://doi.org/10.17605/OSF.IO/Z3G7W.
PubMed: 36816114
DOI: 10.3389/fnins.2023.1046669 -
Frontiers in Psychology 2023Inflammatory Bowel Disease (IBD) affects the quality of life. Patient education and support needs are crucial components of comprehensive chronic illness care. The main...
BACKGROUND
Inflammatory Bowel Disease (IBD) affects the quality of life. Patient education and support needs are crucial components of comprehensive chronic illness care. The main purposes of this review were to (i) explore the informational and supportive needs of these patients to improve the quality of life in the existing literature and (ii) identify the gaps related to the needs of the patients in articles.
METHODS
The scoping review is based on the Daudt methodological framework, a modified version of Arksey and O'Malley. Electronic databases were extensively searched from January 01, 2000 to April 30, 2022. Four electronic databases (PubMed/Medline, CINAHL, APA PsycInfo, Psychology and Behavioral Sciences Collection, APA PsycArticles, and ProQuest) were searched using controlled vocabulary, and specific keywords. The searched terms were matched to each database. We manually searched two key journals, namely the Journal of Inflammatory Bowel Disease and the Journal of Crohn's and Colitis.
RESULTS
In the review, 75 studies on the assessment of the information and support needs of patients with IBD were reviewed. In this regard, 62 and 53 studies were regarding information needs and support needs, respectively. Most of the information needs of patients with IBD reported in the studies were related to diet needs, and educational needs were the most essential support needs.
CONCLUSIONS
Health policymakers and managers can develop care and educational programs related to this disease in health centers according to the needs of the patients. Health professionals, especially gastroenterologists, are the primary referral sources for information on patients. Therefore, gastroenterologists can take the lead in planning and educating the patients and sharing their decisions.
SYSTEMATIC REVIEW REGISTRATION
OSF, https://doi.org/10.17605/OSF.IO/3MWGJ.
PubMed: 37251032
DOI: 10.3389/fpsyg.2023.1055449 -
PLOS Global Public Health 2024Torture survivors experience chronic, somatic pain that may be exacerbated by environmental, social, and structural factors that extend beyond immediate traumatic events...
Torture survivors experience chronic, somatic pain that may be exacerbated by environmental, social, and structural factors that extend beyond immediate traumatic events and diagnoses. We conducted a systematic review of research describing the types and efficacy of treatments for chronic somatic pain in a global population of torture survivors. In this systematic review, we searched Ovid MEDLINE, Ovid EMBASE (1974 to present), and PubMed. We used all appropriate controlled vocabulary and keywords for interventions and treatments for chronic somatic pain in torture survivors. The population included survivors of torture of any age and in any country. Outcomes included pain relief, pain intensity, distress level, and quality of life. Four authors participated in screening, full-text review, and quality assessment, with each title and abstract being independently reviewed by two authors. This study is reported according to the PRISMA guidelines and registered in PROSPERO. We included six pre-post intervention studies and four pilot or modified randomized controlled trials (RCTs), for a total of ten studies included in the analysis. Different combinations of interventions targeted pain reduction in refugees, the majority of whom were torture survivors as the primary (n = 1) or secondary (n = 9) outcome. Sample sizes varied from eight to 470 participants. We identified three main types of interventions: multimodal combined, manual therapy, and specific types of talk therapy. Five studies demonstrated positive outcomes on pain and its intensity, three reported no effect, and two had mixed outcomes. Pain in torture survivors is often considered a symptom secondary to mental health illness and not targeted directly. Instead, combined interventions are mainly directed at posttraumatic stress disorder (PTSD), depression, and anxiety. Most studies noted promising preliminary results and plans to conduct RCTs to increase the reproducibility and quality of their pilot data.
PubMed: 38547161
DOI: 10.1371/journal.pgph.0003070 -
PLOS Digital Health Oct 2022Lack of interoperability and integration between heterogeneous health systems is a big challenge to realize the potential benefits of eHealth. To best move from siloed...
Lack of interoperability and integration between heterogeneous health systems is a big challenge to realize the potential benefits of eHealth. To best move from siloed applications to interoperable eHealth solutions, health information exchange (HIE) policy and standards are necessary to be established. However, there is no comprehensive evidence on the current status of HIE policy and standards on the African continent. Therefore, this paper aimed to systematically review the status of HIE policy and standards which are currently in practice in Africa. A systematic search of the literature was conducted from Medical Literature Analysis and Retrieval System Online (MEDLINE), Scopus, Web of Science, and Excerpta Medica Database (EMBASE), and a total of 32 papers (21 strategic documents and 11 peer-reviewed papers) were selected based on predefined criteria for synthesis. Results revealed that African countries have paid attention to the development, improvement, adoption, and implementation of HIE architecture for interoperability and standards. Synthetic and semantic interoperability standards were identified for the implementation of HIE in Africa. Based on this comprehensive review, we recommend that comprehensive interoperable technical standards should be set at each national level and should be guided by appropriate governance and legal frameworks, data ownership and use agreements, and health data privacy and security guidelines. On top of the policy issues, there is a need to identify a set of standards (health system standards, communication, messaging standards, terminology/vocabulary standards, patient profile standards, privacy and security, and risk assessment) and implement them throughout all levels of the health system. On top of this, we recommend that the Africa Union (AU) and regional bodies provide the necessary human resource and high-level technical support to African countries to implement HIE policy and standards. To realize the full potential of eHealth in the continent, it is recommended that African countries need to have a common HIE policy, interoperable technical standards, and health data privacy and security guidelines. Currently, there is an ongoing effort by the Africa Centres for Disease Control and Prevention (Africa CDC) towards promoting HIE on the continent. A task force has been established from Africa CDC, Health Information Service Provider (HISP) partners, and African and global HIE subject matter experts to provide expertise and guidance in the development of AU policy and standards for HIE. Although the work is still ongoing, the African Union shall continue to support the implementation of HIE policy and standards in the continent. The authors of this review are currently working under the umbrella of the African Union to develop the HIE policy and standard to be endorsed by the head of states of the Africa Union. As a follow-up publication to this, the result will be published in mid-2022.
PubMed: 36812615
DOI: 10.1371/journal.pdig.0000118 -
BMC Public Health Aug 2023The objective of this systematic review is to identify tuberculosis (TB) high-risk among the general population globally. The review was conducted using the following...
INTRODUCTION
The objective of this systematic review is to identify tuberculosis (TB) high-risk among the general population globally. The review was conducted using the following steps: elaboration of the research question, search for relevant publications, selection of studies found, data extraction, analysis, and evidence synthesis.
METHODS
The studies included were those published in English, from original research, presented findings relevant to tuberculosis high-risk across the globe, published between 2017 and 2023, and were based on geospatial analysis of TB. Two reviewers independently selected the articles and were blinded to each other`s comments. The resultant disagreement was resolved by a third blinded reviewer. For bibliographic search, controlled and free vocabularies that address the question to be investigated were used. The searches were carried out on PubMed, LILACS, EMBASE, Scopus, and Web of Science. and Google Scholar.
RESULTS
A total of 79 published articles with a 40-year study period between 1982 and 2022 were evaluated. Based on the 79 studies, more than 40% of all countries that have carried out geospatial analysis of TB were from Asia, followed by South America with 23%, Africa had about 15%, and others with 2% and 1%. Various maps were used in the various studies and the most used is the thematic map (32%), rate map (26%), map of temporal tendency (20%), and others like the kernel density map (6%). The characteristics of the high-risk and the factors that affect the hotspot's location are evident through studies related to poor socioeconomic conditions constituting (39%), followed by high population density (17%), climate-related clustering (15%), high-risk spread to neighbouring cities (13%), unstable and non-random cluster (11%).
CONCLUSION
There exist specific high-risk for TB which are areas that are related to low socioeconomic conditions and spectacular weather conditions, these areas when well-known will be easy targets for intervention by policymakers. We recommend that more studies making use of spatial, temporal, and spatiotemporal analysis be carried out to point out territories and populations that are vulnerable to TB.
Topics: Humans; Tuberculosis; Africa; Asia; Cities; Climate
PubMed: 37598144
DOI: 10.1186/s12889-023-16493-y -
Life (Basel, Switzerland) Mar 2021This systematic review sheds light on the effectiveness of auditory-verbal therapy (AVT) outcomes in children with cochlear implants (CIs). The presented outcome is... (Review)
Review
This systematic review sheds light on the effectiveness of auditory-verbal therapy (AVT) outcomes in children with cochlear implants (CIs). The presented outcome is based on research findings from the last 10 years. The systematic review was designed based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and Critical Appraisal of Treatment Evidence (CATE) checklist. Specific keywords were chosen based on the research question and searched on the PubMed database. All searched papers were analysed based on specific exclusion criteria and classified into four evidence levels. The results revealed that children who participated in AV therapy can achieve linguistic skills at the same level as their hearing peers. Voice quality seemed positively affected, placing young children with CIs in the normal range for receptive vocabulary development. In contrast, reading skills seemed less benefited. AV therapy seems to contribute to integration into mainstream society. Despite the recorded speech and language improvements of young children with CIs, the aim of AV therapy is still not fulfilled. AV therapy can be seen as the best clinical practice for young children with CIs till now, but the lack of well-controlled studies is undermining.
PubMed: 33805711
DOI: 10.3390/life11030239 -
International Journal of Molecular... Dec 2023Breast implant-associated anaplastic large cell lymphoma (BIA-ALCL) is a distinct subtype of T-cell non-Hodgkin lymphoma that arises in the context of prolonged exposure... (Review)
Review
Breast implant-associated anaplastic large cell lymphoma (BIA-ALCL) is a distinct subtype of T-cell non-Hodgkin lymphoma that arises in the context of prolonged exposure to textured breast implants. The intent of this manuscript is to explore whether the bacterial presence in biofilms on these implants is a mere incidental finding or plays a pivotal role in the pathogenesis of BIA-ALCL. Our goal is to delineate the extent of bacterial involvement, offering insights into potential underlying mechanisms, and establishing future research priorities aimed at resolving the remaining uncertainties surrounding this complex association. A comprehensive systematic review of several databases was performed. The search strategy was designed and conducted by an experienced librarian using controlled vocabulary with keywords. The electronic search identified 442 publications. After evaluation, six studies from 2015 to 2021 were included, encompassing 201 female patients aged 23 to 75. The diagnosis span post-implantation ranged from 53 to 135.6 months. Studies consistently found bacteria near breast implants in both BIA-ALCL cases and controls, with varied microbial findings. Both BIA-ALCL cases and controls exhibited the presence of specific bacteria, including , , , and spp., without any statistically significant differences between groups. The use of antiseptic and antimicrobial agents during implant insertion did not demonstrate any impact on reducing or altering the risk of developing BIA-ALCL. Our systematic review reveals that the current evidence is inadequate to link bacterial etiology as a central factor in the development of BIA-ALCL. The limitations in the existing data prevent a complete dismissal of the role of biofilms in its pathogenesis. The observed gap in knowledge underscores the need for more focused and comprehensive research, which should be structured in a multi-faceted approach. Initially, this involves the utilization of sophisticated genomic and proteomic methods. Following this, it is crucial to delve into the study of immunological reactions specifically induced by biofilms. Finally, this research should incorporate extended observational studies, meticulously tracking the evolution of biofilm development and its correlation with the emergence of BIA-ALCL. In light of the inconclusive nature of current findings, further investigation is not only justified but urgently needed to clarify these unresolved issues.
Topics: Humans; Female; Breast Implants; Lymphoma, Large-Cell, Anaplastic; Proteomics; Breast; Bacteria
PubMed: 38203524
DOI: 10.3390/ijms25010355 -
Epidemiology and Psychiatric Sciences Oct 2019Despite the magnitude and protracted nature of the Rohingya refugee situation, there is limited information on the culture, mental health and psychosocial wellbeing of...
AIMS
Despite the magnitude and protracted nature of the Rohingya refugee situation, there is limited information on the culture, mental health and psychosocial wellbeing of this group. This paper, drawing on a report commissioned by the United Nations High Commissioner for Refugees (UNHCR), aims to provide a comprehensive synthesis of the literature on mental health and psychosocial wellbeing of Rohingya refugees, including an examination of associated cultural factors. The ultimate objective is to assist humanitarian actors and agencies in providing culturally relevant Mental Health and Psychosocial Support (MHPSS) for Rohingya refugees displaced to Bangladesh and other neighbouring countries.
METHODS
We conducted a systematic search across multiple sources of information with reference to the contextual, social, economic, cultural, mental health and health-related factors amongst Rohingya refugees living in the Asia-Pacific and other regions. The search covered online databases of diverse disciplines (e.g. medicine, psychology, anthropology), grey literature, as well as unpublished reports from non-profit organisations and United Nations agencies published until 2018.
RESULTS
The legacy of prolonged exposure to conflict and persecution compounded by protracted conditions of deprivations and displacement is likely to increase the refugees' vulnerability to wide array of mental health problems including posttraumatic stress disorder, anxiety, depression and suicidal ideation. High rates of sexual and gender-based violence, lack of privacy and safe spaces and limited access to integrated psychosocial and mental health support remain issues of concern within the emergency operation in Bangladesh. Another challenge is the limited understanding amongst the MHPSS personnel in Bangladesh and elsewhere of the language, culture and help-seeking behaviour of Rohingya refugees. While the Rohingya language has a considerable vocabulary for emotional and behavioural problems, there is limited correspondence between these Rohingya terms and western concepts of mental disorders. This hampers the provision of culturally sensitive and contextually relevant MHPSS services to these refugees.
CONCLUSIONS
The knowledge about the culture, context, migration history, idioms of distress, help-seeking behaviour and traditional healing methods, obtained from diverse sources can be applied in the design and delivery of culturally appropriate interventions. Attention to past exposure to traumatic events and losses need to be paired with attention for ongoing stressors and issues related to worries about the future. It is important to design MHPSS interventions in ways that mobilise the individual and collective strengths of Rohingya refugees and build on their resilience.
Topics: Armed Conflicts; Bangladesh; Culturally Competent Care; Culture; Humans; Mental Health; Myanmar; Psychological Trauma; Quality of Life; Refugees; Stress Disorders, Post-Traumatic; Stress, Psychological
PubMed: 31006421
DOI: 10.1017/S2045796019000192 -
PeerJ 2023The emerging field of environmental DNA (eDNA) research lacks universal guidelines for ensuring data produced are FAIR-findable, accessible, interoperable, and...
The emerging field of environmental DNA (eDNA) research lacks universal guidelines for ensuring data produced are FAIR-findable, accessible, interoperable, and reusable-despite growing awareness of the importance of such practices. In order to better understand these data usability challenges, we systematically reviewed 60 peer reviewed articles conducting a specific subset of eDNA research: metabarcoding studies in marine environments. For each article, we characterized approximately 90 features across several categories: general article attributes and topics, methodological choices, types of metadata included, and availability and storage of sequence data. Analyzing these characteristics, we identified several barriers to data accessibility, including a lack of common context and vocabulary across the articles, missing metadata, supplementary information limitations, and a concentration of both sample collection and analysis in the United States. While some of these barriers require significant effort to address, we also found many instances where small choices made by authors and journals could have an outsized influence on the discoverability and reusability of data. Promisingly, articles also showed consistency and creativity in data storage choices as well as a strong trend toward open access publishing. Our analysis underscores the need to think critically about data accessibility and usability as marine eDNA metabarcoding studies, and eDNA projects more broadly, continue to proliferate.
Topics: DNA, Environmental; Biodiversity; DNA Barcoding, Taxonomic
PubMed: 36992947
DOI: 10.7717/peerj.14993