Including older people in clinical research.
Ontology highlight
ABSTRACT:
SUBMITTER: McMurdo ME
PROVIDER: S-EPMC1283170 | biostudies-literature | 2005 Nov
REPOSITORIES: biostudies-literature
Publications
Including older people in clinical research.
McMurdo Marion E T ME Witham Miles D MD Gillespie Neil D ND
BMJ (Clinical research ed.) 20051101 7524
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Project description:BackgroundOlder people are often explicitly or implicitly excluded from research, in particular clinical trials. This means that study findings may not be applicable to them, or that older people may not be offered treatments due to an absence of evidence.AimsThe aim of this work was to develop recommendations to guide all research relevant to older people.MethodsA diverse stakeholder group identified barriers and solutions to including older people in research. In parallel, a rapid literature review of published papers was undertaken to identify existing papers on the inclusion of older people in research. The findings were synthesised and mapped onto a socio-ecological model. From the synthesis we identified themes that were developed into initial recommendations that were iteratively refined with the stakeholder group.ResultsA range of individual, interpersonal, organisational, community and policy factors impact on the inclusion of older people in research. A total of 14 recommendations were developed such as removing upper age limits and comorbidity exclusions, involving older people, advocates and health and social care professionals with expertise in ageing in designing the research, and considering flexible or alternative approaches to data collection to maximise opportunities for participation. We also developed four questions that may guide those developing, reviewing and funding research that is inclusive of older people.ConclusionOur recommendations provide up to date, practical advice on ways to improve the inclusion of older people in health and care research.
| S-EPMC10234283 | biostudies-literature
Project description:Aging is a condition that may be characterized by a decline in physical, sensory, and mental capacities, while increased morbidity and multimorbidity may be associated with disability. A wide range of clinical conditions (e.g., frailty, mild cognitive impairment, metabolic syndrome) and age-related diseases (e.g., Alzheimer's and Parkinson's disease, cancer, sarcopenia, cardiovascular and respiratory diseases) affect older people. Virtual reality (VR) is a novel and promising tool for assessment and rehabilitation in older people. Usability is a crucial factor that must be considered when designing virtual systems for medicine. We conducted a systematic review with Preferred Reporting Items for Systematic reviews and Meta-analysis (PRISMA) guidelines concerning the usability of VR clinical systems in aging and provided suggestions to structure usability piloting. Findings show that different populations of older people have been recruited to mainly assess usability of non-immersive VR, with particular attention paid to motor/physical rehabilitation. Mixed approach (qualitative and quantitative tools together) is the preferred methodology; technology acceptance models are the most applied theoretical frameworks, however senior adapted models are the best within this context. Despite minor interaction issues and bugs, virtual systems are rated as usable and feasible. We encourage usability and user experience pilot studies to ameliorate interaction and improve acceptance and use of VR clinical applications in older people with the aid of suggestions (VR-USOP) provided by our analysis.
| S-EPMC7156831 | biostudies-literature
Project description:Given the gut microbiota involve aging processing, we performed comparative analysis of gut bacteriophage between older and young subjects using next-generation sequencing (NGS). In our previous study, we found that the Ruminococcaceae is higher in aged subjects comparing to young one. To identify the bacteriophage targeting to the Ruminococcaceae, we also access the composition of phage in the Ruminococcaceae (ATCC, TSD-27) after incubated with human stool samples. The Lactobacillus (ATCC, LGG) targeting phage was used as the control. The virome sequencing analysis using NGS indicated that Myoviridae are high enrich in young subjects and predominate in TSD-27 targeting phage.
2022-07-20 | GSE196622 | GEO
Project description:Genome-wide DNA methylation profiling of blood samples from people living with HIV HIV-1 infection impacts biological ageing, and epigenetic clocks highlight epigenetic age acceleration in people with HIV. Despite evidence indicating sex differences in clinical, immunological, and virological measures, females have been underrepresented in most HIV epigenetic studies. Hence, we generated a more representative epigenetic dataset to examine sex differences in epigenetic ageing and relationships to clinical phenotypes.
2025-03-05 | GSE283506 | GEO
Project description:BACKGROUND:Healthcare services are being increasingly digitalised in European countries. However, in studies evaluating digital health technology, some people are less likely to participate than others, e.g. those who are older, those with a lower level of education and those with poorer digital skills. Such non-participation in research - deriving from the processes of non-recruitment of targeted individuals and self-selection - can be a driver of old-age exclusion from new digital health technologies. We aim to introduce, discuss and test an instrument to measure non-participation in digital health studies, in particular, the process of self-selection. METHODS:Based on a review of the relevant literature, we designed an instrument - the NPART survey questionnaire - for the analysis of self-selection, covering five thematic areas: socioeconomic factors, self-rated health and subjective overall quality of life, social participation, time resources, and digital skills and use of technology. The instrument was piloted on 70 older study persons in Sweden, approached during the recruitment process for a trial study. RESULTS:Results indicated that participants, as compared to decliners, were on average slightly younger and more educated, and reported better memory, higher social participation, and higher familiarity with and greater use of digital technologies. Overall, the survey questionnaire was able to discriminate between participants and decliners on the key aspects investigated, along the lines of the relevant literature. CONCLUSIONS:The NPART survey questionnaire can be applied to characterise non-participation in digital health research, in particular, the process of self-selection. It helps to identify underrepresented groups and their needs. Data generated from such an investigation, combined with hospital registry data on non-recruitment, allows for the implementation of improved sampling strategies, e.g. focused recruitment of underrepresented groups, and for the post hoc adjustment of results generated from biased samples, e.g. weighting procedures.
| S-EPMC6842243 | biostudies-literature
Project description:Homecare is generally understood to refer to services that support people to continue living in their own homes. Older people are the primary users and many countries report an increase in the number using homecare services and greater spending on such provision, driven in part by investment in 'ageing in place' policies. Despite this, and reflecting social care more generally, homecare is relatively under-researched. However, in the UK at least, there is growing interest and investment in social care research. In order that this investment is not wasted, it is essential that research addresses what stakeholders identify as research priorities. This study reports work undertaken in the UK during 2021/22 to identify research priorities for homecare for older people, and a broad scoping of existing evidence. A two-stage consultation process was used. First, topic areas for research were identified through consultations with stakeholders. Second, a survey ascertained agreement and differences between groups regarding the relative importance of topic areas as research priorities. Over 50 people participated including older people (n = 7), family members (n = 11), homecare workers (n = 16), homecare providers (n = 9) and national policy, evidence and advocacy leads (n = 13). Twenty discrete research topic areas were identified. Only one topic area (Joint working between homecare and health services) was a 'Top 5' research priority for all stakeholder groups. Timely engagement with homecare and Workforce: recruitment and retention were 'Top 5' priorities for three stakeholder groups. Scoping of existing research indicates that topic areas receiving the most research attention to date are not among those identified as being of high priority for research. To our knowledge, this is the first time research priorities for homecare have been generated. Findings will be of value to research funders, organisations using research evidence and the research community.
| S-EPMC10087309 | biostudies-literature
Project description:BackgroundThere is growing consensus on the importance of identifying age-related inequities in the receipt of public health and healthcare interventions, but concerns regarding conceptual and methodological rigour in this area of research. Establishing age inequity in receipt requires evidence of a difference that is not an artefact of poor measurement of need or receipt; is not warranted on the grounds of patient preference or clinical safety; and is judged to be unfair.MethodA systematic, thematic literature review was undertaken with the objective of characterising recent research approaches. Studies were eligible if the population was in a country within the Organisation for Economic Co-operation and Development and analyses included an explicit focus on age-related patterns of healthcare receipt including those 60 years or older. A structured extraction template was applied. Extracted material was synthesised in thematic memos. A set of categorical codes were then defined and applied to produce summary counts across key dimensions. This process was iterative to allow reconciliation of discrepancies and ensure reliability.ResultsForty nine studies met the eligibility criteria. A wide variety of concepts, terms and methodologies were used across these studies. Thirty five studies employed multivariable techniques to produce adjusted receipt-need ratios, though few clearly articulated their rationale, indicating the need for great conceptual clarity. Eighteen studies made reference to patient preference as a relevant consideration, but just one incorporated any kind of adjustment for this factor. Twenty five studies discussed effectiveness among older adults, with fourteen raising the possibility of differential effectiveness, and one differential cost-effectiveness, by age. Just three studies made explicit reference to the ethical nature of healthcare resource allocation by age. While many authors presented suitably cautious conclusions, some appeared to over-stretch their findings concluding that observed differences were 'inequitable'. Limitations include possible biases in the retrieved material due to inconsistent database indexing and a focus on OECD country populations and studies with English titles.ConclusionsCaution is needed among clinicians and other evidence-users in accepting claims of healthcare 'ageism' in some published papers. Principles for improved research practice are proposed.
| S-EPMC5505033 | biostudies-literature
Project description:BackgroundThere is limited evidence regarding the needs of older people, including those living with frailty, to inform research priority setting.ObjectivesThis systematic review aimed to identify the range of research priorities of community-dwelling older people living in their own home, including those living with frailty.MethodsIncluded studies were from economically developed countries and designed to identify the priorities for research or unmet needs of community-dwelling older people. Studies were excluded if they described priorities relating to specific health conditions. Medline, Embase, PsycInfo and CINAHL were searched (January 2010-June 2022), alongside grey literature. Study quality was assessed, but studies were not excluded on the basis of quality. A bespoke data extraction form was used and content analysis undertaken to synthesise findings.ResultsSeventy-five reports were included. Seven explicitly aimed to identify the priorities or unmet needs of frail older people; 68 did not specify frailty as a characteristic. Study designs varied, including priority setting exercises, surveys, interviews, focus groups and literature reviews. Identified priorities and unmet needs were organised into themes: prevention and management, improving health and care service provision, improving daily life, meeting carers' needs and planning ahead.DiscussionMany priority areas were raised by older people, carers and health/care professionals, but few were identified explicitly by/for frail older people. An overarching need was identified for tailored, collaborative provision of care and support.ConclusionReview findings provide a valuable resource for researchers and health/care staff wishing to focus their research or service provision on areas of importance for older people.
| S-EPMC10798941 | biostudies-literature
Project description:IntroductionOlder adults have a high disease burden but are often underrepresented in research studies due to recruitment and retention obstacles, among others. Geriatric research specialists have identified solutions to these challenges and designed frameworks to help other researchers. Our team utilized three frameworks to create an interactive webinar series aimed to educate research team members on Age-Friendly practices.MethodsWe recruited 40 non-aging-trained research team members to participate in a six-session, real-time webinar series from October to November 2022. Sessions were comprised of 20-30 minute didactics and 30-40 minute group discussions. Participants completed pre- and post-program surveys, commitment to change forms, and post-webinar session surveys. Responses were examined for strengths and areas for improvement. Wilcoxon signed-rank tests assessed differences in confidence scores.ResultsSelf-reported confidence scores improved after the webinar series. Most participants provided positive feedback and high likeliness to use what they learned and recommend the webinar to others. The strengths were practical tips, applicable tools, and real-world examples. The major area for improvement was information on industry-sponsored trials. The commitment to change responses varied from pledging to use more inclusive language to adapting materials to improve the consent process.ConclusionThis interactive Age-Friendly Research webinar series was feasible and well received by participants. We created an Age-Friendly Research community fostering commitment to change clinical and translational research to be more inclusive of older adults. Future work will include more information on industry-sponsored trials and expand to other research centers.
| S-EPMC10565191 | biostudies-literature
Project description:BackgroundThe use of digital technologies is increasing in health care. However, studies evaluating digital health technologies can be characterized by selective nonparticipation of older people, although older people represent one of the main user groups of health care.ObjectiveWe examined whether and how participation in an exergame intervention study was associated with age, gender, and heart failure (HF) symptom severity.MethodsA subset of data from the HF-Wii study was used. The data came from patients with HF in institutional settings in Germany, Italy, the Netherlands, and Sweden. Selective nonparticipation was examined as resulting from two processes: (non)recruitment and self-selection. Baseline information on age, gender, and New York Heart Association Functional Classification of 1632 patients with HF were the predictor variables. These patients were screened for HF-Wii study participation. Reasons for nonparticipation were evaluated.ResultsOf the 1632 screened patients, 71% did not participate. The nonrecruitment rate was 21%, and based on the eligible sample, the refusal rate was 61%. Higher age was associated with lower probability of participation; it increased both the probabilities of not being recruited and declining to participate. More severe symptoms increased the likelihood of nonrecruitment. Gender had no effect. The most common reasons for nonrecruitment and self-selection were related to physical limitations and lack of time, respectively.ConclusionsResults indicate that selective nonparticipation takes place in digital health research and that it is associated with age and symptom severity. Gender effects cannot be proven. Such systematic selection can lead to biased research results that inappropriately inform research, policy, and practice.Trial registrationClinicalTrial.gov NCT01785121, https://clinicaltrials.gov/ct2/show/NCT01785121.
| S-EPMC7305561 | biostudies-literature