Dataset Information

Strategies to Improve Participation of Older Adults in Cancer Research.

ABSTRACT: Cancer is a disease associated with aging. As the US population ages, the number of older adults with cancer is projected to dramatically increase. Despite this, older adults remain vastly underrepresented in research that sets the standards for cancer treatments and, consequently, clinicians struggle with how to interpret data from clinical trials and apply them to older adults in practice. A combination of system, clinician, and patient barriers bar opportunities for trial participation for many older patients, and strategies are needed to address these barriers at multiple fronts, five of which are offered here. This review highlights the need to (1) broaden eligibility criteria, (2) measure relevant end points, (3) expand standard trial designs, (4) increase resources (e.g., institutional support, interdisciplinary care, and telehealth), and (5) develop targeted interventions (e.g., behavioral interventions to promote patient enrollment). Implementing these solutions requires a substantial investment in engaging and collaborating with community-based practices, where the majority of older patients with cancer receive their care. Multifaceted strategies are needed to ensure that older patients with cancer, across diverse healthcare settings, receive the highest-quality, evidence-based care.

SUBMITTER: Liu J

PROVIDER: S-EPMC7291007 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Strategies to Improve Participation of Older Adults in Cancer Research.

Liu Jennifer J Gutierrez Eutiquio E Tiwari Abhay A Padam Simran S Li Daneng D Dale William W Pal Sumanta K SK Stewart Daphne D Subbiah Shanmugga S Bosserman Linda D LD Presant Cary C Phillips Tanyanika T Yap Kelly K Hill Addie A Bhatt Geetika G Yeon Christina C Cianfrocca Mary M Yuan Yuan Y Mortimer Joanne J Sedrak Mina S MS

Journal of clinical medicine 20200522 5

Cancer is a disease associated with aging. As the US population ages, the number of older adults with cancer is projected to dramatically increase. Despite this, older adults remain vastly underrepresented in research that sets the standards for cancer treatments and, consequently, clinicians struggle with how to interpret data from clinical trials and apply them to older adults in practice. A combination of system, clinician, and patient barriers bar opportunities for trial participation for ma ...[more]

PMID: 32455877

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Project description:BACKGROUND:Recruiting racial/ethnic minorities into health research is challenging. Although researchers affiliated with members of the study population (seen as insiders) may increase research participation of racial/ethnic minorities, little is known about who participants see as insiders and how they respond to insider versus outsider researchers. OBJECTIVES:The aim of the study was to examine perceptions of Hmong older adults toward insider versus outsider researchers and the influence of these perceptions on their willingness to participate in research. METHODS:Participants in a study evaluating use of a culturally and linguistically adapted audio computer-assisted self-interviewing system with helper assistance (ACASI-H) provided information about what they thought would encourage others in their community to participate in research. ACASI-H was used for collection of health data with 30 Hmong older adults. Participants rated the likelihood of participation if the researcher was Hmong and answered open-ended questions about participation when the researcher was not Hmong. Conventional content analysis was used to analyze open-ended questions. RESULTS:Sixteen (53%) participants reported that they would be "likely" to participate in the research if the researcher was Hmong. Fourteen (47%) participants reported that they would participate in research if the researcher was not Hmong. In addition to ethnic affiliation, trust in the researcher could shift the perception of the researcher toward insider status, thereby increasing willingness of Hmong adults to participate in research. Trust in the researcher and movement toward insider status could be increased by calling out a connection between the researcher and the participant or creating reciprocity. DISCUSSION:Findings suggest that increasing research participation of Hmong (and possibly other) participants, particularly when researchers do not share ethnic membership, can be achieved by building trust. This study also suggests a more nuanced perception of insider status, as a continuum, rather than a dichotomy, may be a more accurate reflection of the relationship between participants and researchers.

Project description:BackgroundThe World Health Organization recognizes participation in meaningful life roles as a key component of health. However, the evidence base for interventions to improve participation remains inconclusive. In particular, whether exercise interventions improve participation in life roles is unclear.PurposeThe aim of this review was to evaluate the effect of physical exercise interventions on participation in life roles in older adults residing in the community.Data sourcesThe PubMed, Embase, CINAHL, Cochrane, and PEDro databases were searched from inception through March 2015.Study selectionRandomized controlled trials comparing the effects of an exercise intervention to usual care on participation in life roles in adults who were 60 years of age or older were included in this review.Data extractionTeams of 2 investigators independently extracted data on participation. Methodological quality was appraised using the Cochrane tool for assessing the risk of bias. The protocol was registered with Prospero (CRD42014014880).Data synthesisEighteen randomized controlled trials with a total of 2,315 participants met the inclusion criteria. Standardized mean differences (SMDs) with 95% CIs were calculated using a random-effects model. A meta-analysis of 16 studies showed no overall effect of the exercise interventions on participation (SMD = 0.03; 95% CI = -0.10 to 0.16). Subgroup analysis showed that exercise interventions lasting 12 months or more had a small positive effect on participation (SMD = 0.15; 95% CI = 0.02 to 0.28).LimitationsLimitations included variability in definitions and measures of participation.ConclusionsIn general, exercise interventions do not improve participation in life roles in older adults. The results do not support the implicit assumption that exercise-based interventions associated with improved function/activity also result in improved participation. Investigation of complex interventions that go beyond exercise to address participation in life roles for older adults is warranted.

Project description:BackgroundAn inability to successfully recruit participants into clinical research has consequences that negatively affect the conduct and reliability of research studies. Understanding facilitators of research participation, namely motives for participation and preferred research outcomes, may improve recruitment and retention of clinical trials related to chronic pain. The present study explored research participation facilitators among individuals with chronic pain and their association with demographic characteristics, pain-related characteristics, and factors related to future research engagement.MethodsIndividuals from Michigan who were 18 years or older and self-reported having chronic pain completed an online survey assessing motives for research participation and desired research outcomes. Analyses were conducted in three stages. First, we evaluated underlying factors of motives for participation and research outcome preferences using principal components analysis. Second, we classified individuals according to their patterns of facilitators using latent profile analysis. Finally, we evaluated differences between facilitator profiles in demographic characteristics, pain-related characteristics, and factors related to future research engagement using χ2 analyses and Kruskal-Wallis rank sum tests.ResultsThree components of motives for research participation were identified: social engagement/enjoyment; pain improvement/advancing science; and compensation. Three components of research outcome preferences were identified: co-occurring symptom reduction; behavior reduction modification; and pain and function improvement. Four potential patient-centered profiles utilizing these dimensions of facilitators were identified that had unique demographic characteristics, research participation willingness, and treatment interest.ConclusionsOur data provide a framework of motives and research outcome preferences that may inform recruitment and retention in chronic pain research. It also gives an indication of who may respond best to active or passive recruitment strategies that appeal to a given motive or preferred outcome. This information may be useful for improving recruitment and to monitor any potential biases in participant samples.

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.

Dataset Information

Strategies to Improve Participation of Older Adults in Cancer Research.

Publications

Strategies to Improve Participation of Older Adults in Cancer Research.

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