Strategies to Improve Participation of Older Adults in Cancer Research.
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ABSTRACT:
SUBMITTER: Liu J
PROVIDER: S-EPMC7291007 | biostudies-literature | 2020 May
REPOSITORIES: biostudies-literature
Publications
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]
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Project description:Background and objectivesHomebound older adults and their caregivers have not historically been engaged as advisors in patient-centered outcomes research. This study aimed to understand the attitudes of homebound older adults and their caregivers toward research and participation as research advisors.Research design and methodsDescriptive thematic analysis of semistructured interviews conducted with 30 homebound older adults and caregivers recruited from home-based medical care practices. Interview questions addressed opinions on research and preferences for engaging as research advisors.ResultsOf 30 participants, 22 were female, 17 were people of color, and 11 had Medicaid. Two themes emerged related to perceptions of research overall: (a) utility of research and (b) relevance of research. Overall, participants reported positive attitudes toward research and felt that research could affect people like them. Three themes emerged related to participating as research advisors: (a) motivators, (b) barriers, and (c) preferences. Participants were open to engaging in a variety of activities as research advisors. Most participants were motivated by helping others. Common barriers included time constraints and caregiving responsibilities, and physical barriers for homebound individuals. Participants also reported fears such as lacking the skills or expertise to contribute as advisors. Many were willing to participate if these barriers were accommodated and shared their communication preferences.Discussion and implicationsDiverse homebound older adults and caregivers are willing to be engaged as research advisors and provided information to inform future engagement strategies. Findings can inform efforts to meet new age-inclusive requirements of the National Institutes of Health.
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Project description:Social engagement and autonomy are vital for life satisfaction among older adults. We measured multiple domains of social participation and autonomy in 120 adults over age 55 years that were part of an educational program at pretest, posttest, and follow-up. Quantitative and qualitative data were analyzed for differences between Black and White participants. White participants reported worse engagement in the family role domain and a lower Total Participation Score at posttest than pretest; however, scores returned to baseline levels by follow-up. Black participants reported better levels of participation in the social relationship domain at follow-up than at pretest. We found no evidence of qualitative differences between racial groups. Barriers to social participation and autonomy included challenges related to health, ageism, transportation, and mobility. Adequate housing, social support, socialization, and perception of individual utility contributed to feeling independent. Educational programs for older adults may provide an opportunity for increased social participation.
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Project description:Background Heterogenous older adult populations are underrepresented in clinical trials, and their participation is necessary for interventions that directly target them. The purpose of this study was to evaluate reasons why hospitalized older adults declined participation in two deprescribing clinical trials. Methods We report enrollment data from two deprescribing trials, Shed-MEDS (non-Veterans) and VA DROP (Veterans). For both trials, inclusion criteria required participants to be hospitalized, age 50 or older, English-speaking, and taking five or more home medications. Eligible patients were approached for enrollment while hospitalized. When an eligible patient or surrogate declined participation, the reason(s) were recorded and subsequently analyzed inductively to develop themes, and a Chi-square test was used for comparison. Results Across both trials, 1226 patients (545 non-Veterans and 681 Veterans) declined enrollment and provided reasons, which were condensed into three themes: (1) feeling overwhelmed by their current health status, (2) lack of interest or mistrust of research, and (3) hesitancy to participate in a deprescribing study. A greater proportion of Veterans expressed a lack of interest or mistrust in research (42% vs 26%, chi-square value = 36.72, p < .001); whereas a greater proportion of non-Veterans expressed feeling overwhelmed by their current health status (54% vs 35%, chi-square value = 42.8 p < 0.001). Across both trials, similar proportion of patients expressed hesitancy to participate in a deprescribing study, with no significant difference between Veterans and non-Veterans (23% and 21%). Conclusions The inclusion of older adults in clinical trial research broadens its impact. Understanding the reasons older adults decline participation can inform future strategies to engage this multimorbid population.
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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.
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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.
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Project description:Nutritional issues among older adults with cancer are an understudied area of research despite significant prognostic implications for treatment side effects, cancer-specific mortality, and overall survival. In May of 2015, the National Cancer Institute and the National Institute on Aging co-sponsored a conference focused on future directions in geriatric oncology research. Nutritional research among older adults with cancer was highlighted as a major area of concern as most nutritional cancer research has been conducted among younger adults, with limited evidence to guide the care of nutritional issues among older adults with cancer. Cancer diagnoses among older adults are increasing, and the care of the older adult with cancer is complicated due to multimorbidity, heterogeneous functional status, polypharmacy, deficits in cognitive and mental health, and several other non-cancer factors. Due to this complexity, nutritional needs are dynamic, multifaceted, and dependent on the clinical scenario. This manuscript outlines the proceedings of this conference including knowledge gaps and recommendations for future nutritional research among older adults with cancer. Three common clinical scenarios encountered by oncologists include (1) weight loss during anti-cancer therapy, (2) malnutrition during advanced disease, and (3) obesity during survivorship. In this manuscript, we provide a brief overview of relevant cancer literature within these three areas, knowledge gaps that exist, and recommendations for future research.
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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.
| S-EPMC10802039 | biostudies-literature