How do quantitative studies involving people with dementia report experiences of standardised data collection? A narrative synthesis of NIHR published studies
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ABSTRACT:
SUBMITTER: Gridley K
PROVIDER: S-EPMC10870617 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
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Project description:BackgroundThe majority of patients with chondrosarcoma of bone have an excellent overall survival after local therapy. However, in case of unresectable locally advanced or metastatic disease the outcome is poor and limited treatment options exist. Therefore we conducted a survey of clinical phase I or II trials and retrospective studies that described systemic therapy for chondrosarcoma patients.Materials and methodsUsing PubMed, clinicaltrials.gov, the Cochrane controlled trial register and American Society of Clinical Oncology (ASCO) abstracts a literature survey was conducted. From the identified items, data were collected by a systematic analysis. We limited our search to semi-recent studies published between 2000 and 2013 to include modern drugs, imaging techniques and disease evaluations.ResultsA total of 31 studies were found which met the criteria: 9 phase I trials, 11 phase II and 8 retrospective studies. In these studies 855 chondrosarcoma patients were reported. The tested drugs were mostly non-cytotoxic, either alone or in combination with another non-cytotoxic agent or chemotherapy. Currently two phase I trials, one phase IB/II trial and three phase II trials are enrolling chondrosarcoma patients.ConclusionBecause chondrosarcoma of bone is an orphan disease it is difficult to conduct clinical trials. The meagre outcome data for locally advanced or metastatic patients indicate that new treatment options are needed. For the phase I trials it is difficult to draw conclusions because of the low numbers of chondrosarcoma patients enrolled, and at different dose levels. Some phase II trials show promising results which support further research. Retrospective studies are encouraged as they could add to the limited data available. Efforts to increase the number of studies for this orphan disease are urgently needed.
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Project description:Ancient DNA and RNA are valuable data sources for a wide range of disciplines. Within the field of ancient metagenomics, the number of published genetic datasets has risen dramatically in recent years, and tracking this data for reuse is particularly important for large-scale ecological and evolutionary studies of individual taxa and communities of both microbes and eukaryotes. AncientMetagenomeDir (archived at https://doi.org/10.5281/zenodo.3980833 ) is a collection of annotated metagenomic sample lists derived from published studies that provide basic, standardised metadata and accession numbers to allow rapid data retrieval from online repositories. These tables are community-curated and span multiple sub-disciplines to ensure adequate breadth and consensus in metadata definitions, as well as longevity of the database. Internal guidelines and automated checks facilitate compatibility with established sequence-read archives and term-ontologies, and ensure consistency and interoperability for future meta-analyses. This collection will also assist in standardising metadata reporting for future ancient metagenomic studies.
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Project description:Patient accrual is essential for the success of oncology clinical trials. Recruitment for trials involving the development of quantitative imaging biomarkers may face different challenges than treatment trials. This study surveyed investigators and study personnel for evaluating accrual performance and perceived barriers to accrual and for soliciting solutions to these accrual challenges that are specific to quantitative imaging-based trials. Responses for 25 prospective studies were received from 12 sites. The median percent annual accrual attained was 94.5% (range, 3%-350%). The most commonly selected barrier to recruitment (n = 11/25, 44%) was that "patients decline participation," followed by "too few eligible patients" (n = 10/25, 40%). In a forced choice for the single greatest recruitment challenge, "too few eligible patients" was the most common response (n = 8/25, 32%). Quantitative analysis and qualitative responses suggested that interactions among institutional, physician, and patient factors contributed to accrual success and challenges. Multidisciplinary collaboration in trial design and execution is essential to accrual success, with attention paid to ensuring and communicating potential trial benefits to enrolled and future patients.
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Project description:BackgroundOlder people are commonly prescribed complex multi-drug regimens while also experiencing declines in the cognitive and physical abilities required for medication management, leading to increased risk of medication errors and need for assisted living. The purpose of this study was to review published instruments designed to assess patients' capacity to self-administer medications.MethodsSearches of Medline, EMBASE, CINAHL, PsycINFO, International Pharmaceutical Abstracts, Health and Psychosocial Instruments, Google, and reference lists of identified publications were conducted to identify English-language articles describing development and validation of instruments designed to assess patients' capacity to self-administer medications. Methodological quality of validation studies was rated independently against published criteria by two reviewers and reliability and validity data were reviewed.ResultsThirty-two instruments were identified, of which 14 met pre-defined inclusion criteria. Instruments fell into two categories: those that used patients' own medications as the basis for assessment and those that used a simulated medication regimen. The quality of validation studies was generally low to moderate and few instruments were subjected to reliability testing. Most instruments had some evidence of construct validity, through associations with tests of cognitive function, health literacy, activities of daily living or measures of medication management or adherence. Only one instrument had sensitivity and specificity data with respect to prediction of medication-related outcomes such as adherence to therapy. Only three instruments had validity data from more than one independent research group.ConclusionA number of performance-based instruments exist to assess patients' capacity to manage their own medications. These may be useful for identifying physical and cognitive barriers to successful medication management, but further studies are needed to determine whether they are able to accurately and reliably predict medication outcomes.
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Project description:ObjectivesTo identify and synthesise qualitative research from 2001 investigating older people's (65+ years) experiences of dying in nursing and care homes.Methods and outcomesEight electronic databases (AMED, ASSIA, CINAHL Plus, Embase, HMIC, Medline, PsychINFO and Scopus) from 2001 to July 2017 were searched. Studies were included if they were qualitative, primary research and described the experiences of dying in nursing or care homes from the perspectives of the older people themselves, their families or staff. Study quality assessment was undertaken to systematically assess methodological quality, but no studies were excluded as a result.Results1305 articles were identified. Nine met the inclusion criteria. North American studies dominated. Most used a mixture of observations and interviews. All the included studies highlighted the physical discomfort of dying, with many older people experiencing potentially avoidable symptoms if care were to be improved. Negative psychosocial experiences such as loneliness and depression were also often described in addition to limited support with spiritual needs.ConclusionsMore qualitative research giving a holistic understanding of older people's experiences of dying in residential care homes is needed. Undertaking research on this topic is challenging and requires great sensitivity, but the dearth of qualitative research from the perspectives of those most closely involved in older people's deaths hampers service improvement.
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Project description:BackgroundThe Oral Health Observatory (OHO), launched in 2014 by FDI World Dental Federation, aims to provide a coordinated approach to international oral health data collection. A feasibility project involving 12 countries tested the implementation of the methodology and data collection tools and assessed data quality from 6 countries.MethodsNational dental associations (NDAs) recruited dentists following a standardised sampling method. Dentists and patients completed paired questionnaires (N = 7907) about patients' demographics, dental attendance, oral health-related behaviours, oral impacts, and clinical measures using a mobile app. In addition, participating dentists (n = 93) completed an evaluation survey, and NDAs completed a survey and participated in workshops to assess implementation feasibility.ResultsFeasibility data are presented from the 12 participating countries. In addition, the 6 countries most advanced with data collection as of July 2020 (China, Colombia, India, Italy, Japan, and Lebanon) were included in the assessment of data quality and qualitative evaluation of implementation feasibility. All NDAs in these 6 countries reported interest in collecting standardised, international data for policy and communication activities and to understand service use and needs. Eighty-two percent of dentists (n = 76) reported a patient response rate of between 80% and 100%. More than 70% (n = 71) of dentists were either satisfied or very satisfied with the patient recruitment and data collection methods. There were variations in patient oral health and behaviours across countries, such as self-reporting twice-daily brushing which ranged from 45% in India to 83% in Colombia.ConclusionsOHO provides a feasible model for collecting international standardised data in dental practices. Reducing time implications, ensuring mobile app reliability, and allowing practitioners to access patient-reported outcomes to inform practice may enhance implementation.
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Project description:OBJECTIVE:Most babies receive at least some formula milk. Variations in formula-feeding practices can have both short- and long-term health consequences. The literature on parents' experiences of bottle-feeding was systematically reviewed to understand how formula-feeding decisions are made. METHODS:Relevant English-language papers, identified by searching 12 electronic databases, reference lists and related articles and by contacting first authors of included papers, were systematically searched for and appraised. The included studies were analysed and synthesised using a combination of narrative and thematic approaches. Consensus on the final inclusion, interpretation and synthesis of studies was reached across the research team. RESULTS:Six qualitative studies and 17 quantitative studies (involving 13 263 participants) were included. Despite wide differences in study design, context, focus and quality, several consistent themes emerged. Mothers who bottle-fed their babies experienced negative emotions such as guilt, anger, worry, uncertainty and a sense of failure. Mothers reported receiving little information on bottle-feeding and did not feel empowered to make decisions. Mistakes in preparation of bottle-feeds were common. No studies examined how mothers made decisions about the frequency or quantity of bottle-feeds. CONCLUSIONS:Inadequate information and support for mothers who decide to bottle-feed may put the health of their babies at risk. While it is important to promote breastfeeding, it is also necessary to ensure that the needs of bottle-feeding mothers are met.
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| S-EPMC3525193 | biostudies-literature