Factors That Motivate Older Adults to Participate in Research: Typologies and Implications

A key challenge for scholars who study aging is identifying a pool of research volunteers willing to participate. Toolkits and strategies acknowledge the differences in recruitment needed for older adults relative to younger adults, but there is little information about variations among older adult research volunteers. Based on a community sample of older adults age 60+, this study evaluates differences across seven specific motivators across three broad categories: values/altruism, personal growth/improvement, and immediate gratification. We then identify and evaluate four typologies of older adult volunteers based on the combinations of motivations the older adults in our sample identify as important to participation in research studies. Based on these analyses, we describe how our results might inform recruitment and retention practices in aging studies. Further, we will discuss how these results will help shape our technology-based reminder system with a greater understanding of motivations.

Regulation of professional clinical trial volunteers in New Zealand

<p>This paper aims to form a starting point for a discussion of the regulation of paid clinical research volunteers (professional volunteers) in New Zealand. It will argue that professional volunteers, who are currently unregulated as a class of research participants, present unique issues which are not addressed by existing regulation. The major arguments will be that: by restricting the value of financial compensation that can be provided for volunteering in a clinical trial, existing regulation allows professional volunteers to be exploited; professional volunteers are exposed to unregulated compounded risks and it is unlikely that they are properly informed of these risks; and in failing to recognise the existence of professional volunteers, current regulation fails to address their commodification and dehumanisation. Proposals to address these issues will be evaluated through a human rights lens for consistency with the New Zealand Bill of Rights Act 1990 and the Code of Health and Disability Services Consumers’ Rights 1996. Recommendations for reform will be put forward on the basis of this analysis.</p>

Regulation of professional clinical trial volunteers in New Zealand

<p>This paper aims to form a starting point for a discussion of the regulation of paid clinical research volunteers (professional volunteers) in New Zealand. It will argue that professional volunteers, who are currently unregulated as a class of research participants, present unique issues which are not addressed by existing regulation. The major arguments will be that: by restricting the value of financial compensation that can be provided for volunteering in a clinical trial, existing regulation allows professional volunteers to be exploited; professional volunteers are exposed to unregulated compounded risks and it is unlikely that they are properly informed of these risks; and in failing to recognise the existence of professional volunteers, current regulation fails to address their commodification and dehumanisation. Proposals to address these issues will be evaluated through a human rights lens for consistency with the New Zealand Bill of Rights Act 1990 and the Code of Health and Disability Services Consumers’ Rights 1996. Recommendations for reform will be put forward on the basis of this analysis.</p>

Patient and public involvement and engagement: Practice case study with reflections and learnings from a small rural district general hospital

The notion of patient and public involvement and engagement (PPIE) in research has been around for some time, and it is considered essential to ensure high-quality relevant research that is shared and that will make a difference. This case study of practice aims to share the PPIE practice from Dorset County Hospital NHS Foundation Trust, a small rural district general hospital. It describes the process of recruiting patients and members of the public as research volunteers, as well as the plethora of engagement and involvement activities with which they have been involved to date. This is followed by a reflection on the process and an overview of plans for the future, highlighting key challenges as well as learnings. A dedicated role to support/oversee PPIE activities is recommended to coordinate large groups of research volunteers, as well as to monitor the important impact of their input, which is considerable. Increasing diversity and access to under-served groups, and embedding the research volunteer role within the wider clinical research team, are also highlighted as fundamental challenges, as well as opportunities to make the most from this valuable resource. The case study of practice puts forward a recommendation to all research departments to embed PPIE in all of the work that they do.

Differences Between Older Adults Who Do and Do Not Try Hearing Aids and Between Those Who Keep and Return the Devices

The focus of this study was on the differences between older adults who complied with a clinical recommendation for hearing-aid acquisition (adherents; N = 105) and those who did not (nonadherents; N = 34) among a group of research volunteers from the community. All participants were first-time hearing-aid users. Differences between adherents and nonadherents were examined across several domains, including demographic variables, audiometric measures, measures of affect and personality, cognitive variables, hearing-aid expectations, and the perceived hearing difficulties of the older adults and their adjustments to those difficulties. It was found that the adherents differed significantly ( p < .05) from the nonadherents primarily in their perceived difficulties and reactions to them as well as their expectations for hearing aids. Importantly, the pattern of differences between the adherents and nonadherents was primarily confined to measures that could potentially be shaped by appropriate counseling and education of the older adult. In a secondary analysis, among the 105 adherents, a small group ( N = 21) returned their hearing aids for credit with 15 of them completing the outcome measures at the end of a 1-month trial period. When comparisons were made between the adherents who kept their hearing aids ( N = 84) and those who returned them, the primary differences between these two groups of adherents were in the poorer aided outcomes obtained by those who returned their devices.

Limbic-predominant age-related TDP-43 encephalopathy differs from frontotemporal lobar degeneration

TAR-DNA binding protein-43 (TDP-43) proteinopathy is seen in multiple brain diseases. A standardized terminology was recommended recently for common age-related TDP-43 proteinopathy: limbic-predominant, age-related TDP-43 encephalopathy (LATE) and the underlying neuropathological changes, LATE-NC. LATE-NC may be co-morbid with Alzheimer’s disease neuropathological changes (ADNC). However, there currently are ill-defined diagnostic classification issues among LATE-NC, ADNC, and frontotemporal lobar degeneration with TDP-43 (FTLD-TDP). A practical challenge is that different autopsy cohorts are composed of disparate groups of research volunteers: hospital- and clinic-based cohorts are enriched for FTLD-TDP cases, whereas community-based cohorts have more LATE-NC cases. Neuropathological methods also differ across laboratories. Here, we combined both cases and neuropathologists’ diagnoses from two research centres—University of Pennsylvania and University of Kentucky. The study was designed to compare neuropathological findings between FTLD-TDP and pathologically severe LATE-NC. First, cases were selected from the University of Pennsylvania with pathological diagnoses of either FTLD-TDP (n = 33) or severe LATE-NC (mostly stage 3) with co-morbid ADNC (n = 30). Sections from these University of Pennsylvania cases were cut from amygdala, anterior cingulate, superior/mid-temporal, and middle frontal gyrus. These sections were stained for phospho-TDP-43 immunohistochemically and evaluated independently by two University of Kentucky neuropathologists blinded to case data. A simple set of criteria hypothesized to differentiate FTLD-TDP from LATE-NC was generated based on density of TDP-43 immunoreactive neuronal cytoplasmic inclusions in the neocortical regions. Criteria-based sensitivity and specificity of differentiating severe LATE-NC from FTLD-TDP cases with blind evaluation was ∼90%. Another proposed neuropathological feature related to TDP-43 proteinopathy in aged individuals is ‘Alpha’ versus ‘Beta’ in amygdala. Alpha and Beta status was diagnosed by neuropathologists from both universities (n = 5 raters). There was poor inter-rater reliability of Alpha/Beta classification (mean κ = 0.31). We next tested a separate cohort of cases from University of Kentucky with either FTLD-TDP (n = 8) or with relatively ‘pure’ severe LATE-NC (lacking intermediate or severe ADNC; n = 14). The simple criteria were applied by neuropathologists blinded to the prior diagnoses at University of Pennsylvania. Again, the criteria for differentiating LATE-NC from FTLD-TDP was effective, with sensitivity and specificity ∼90%. If more representative cases from each cohort (including less severe TDP-43 proteinopathy) had been included, the overall accuracy for identifying LATE-NC was estimated at &gt;98% for both cohorts. Also across both cohorts, cases with FTLD-TDP died younger than those with LATE-NC (P &lt; 0.0001). We conclude that in most cases, severe LATE-NC and FTLD-TDP can be differentiated by applying simple neuropathological criteria.

Key Success Factors for Doing Business in Hot Air Balloon Riding

The presented study analyzes the relation between customer satisfaction with balloon riding experience and related support activities. The field research by the method of the questionnaire survey of the hot balloon ride events participants was conducted in the Pamukkale district of Denizli province in Turkey. The target group of the research consisted of people who came to Pamukkale and who have participated in the balloon riding activity which is a memorable tourism experience. The questionnaire survey of participants was realized right after their balloon ride experience by research volunteers. Collected data were analyzed through reliability, factor, and regression analyses using package software. In the scope of memorable tourism experiences, the highest average value among the effects of the balloon ride experience was identified in case of happiness, followed by satisfaction and spending level. The effects of the balloon ride experience on happiness, satisfaction, and spending level were positively impacted by the support given for the improvement of hot air balloon activities. The variables describing satisfaction, happiness, and spending level were determined as the most important determinants in relation to support given to hot air balloon activities. The results of this study show that balloon businesses have to increase satisfaction, happiness, and spending levels for the customers who participate in the balloon riding experience. In this way, consumers will support hot air balloon activities, thus increasing the demand for hot air balloon experiences.

4382 All IN for Health: Promoting good health and engaging a health research volunteer community in the Hoosier state

OBJECTIVES/GOALS: To improve and expand health and research literacy throughout Indiana by sharing health-focused resources and research outcomes.To encourage and increase health research participation throughout Indiana by promoting health research opportunities, including clinical studies.METHODS/STUDY POPULATION: Discover and understand community concerns and barriers to good health and clinical research participation by providing a platform for individuals and communities to share their voices.Educate Indiana residents on the importance of participating in health research.Engage with the community to meet them where they are (online) and continue to build relationships throughout the state.Promote healthy living for Indiana residents by sharing health education and resources from existing state health organizations and initiatives.Develop and maintain the largest statewide database of research volunteers.RESULTS/ANTICIPATED RESULTS: The anticipated results from this program include engagement of all populations and all communities throughout the state in conversation and education around good health and health research, as well as participation in health research across the CTSI’s partner organizations. Large-scale growth is expected in both the online community and consented volunteer registry is expected to include and engage racially and ethnically diverse populations, as well as special health populations, such as representatives of rural communities, aged, rare disease survivors, and transgender individuals.DISCUSSION/SIGNIFICANCE OF IMPACT: Thorough this work, the Indiana CTSI has developed a unique program, educating the public about health research and opportunities to participate, while simultaneously supporting research departments with marketing promotion of their efforts, and a ready statewide volunteer community.

Persistent postural perceptual dizziness is on a spectrum in the general population

ObjectiveTo examine the idea that symptoms of persistent postural perceptual dizziness (PPPD) are more common than previously assumed and lie on a spectrum in the general population, thus challenging current theories that PPPD is only a consequence of a vestibular insult.MethodsWe collected 2 common clinical questionnaires of PPPD (Visual Vertigo Analogue Scale [VVAS] and Situational Characteristics Questionnaire [SCQ]) in 4 cohorts: community research volunteers (n = 1941 for VVAS, n = 1,474 for SCQ); paid online participants (n = 190 for VVAS, n = 125 for SCQ); students (n = 204, VVAS only); and patients diagnosed with PPPD (n = 25).ResultsWe found that around 9%, 4%, and 11%, respectively, of the 3 nonclinical cohorts scored above the 25th percentile patient score on 1 PPPD measure (VVAS) and 49% and 54% scored above the 25th percentile patient score on the other measure (SCQ). Scores correlated negatively with age (counter to expectation). As expected, scores correlated with migraine in 2 populations, but this only explained a small part of the variance, suggesting that migraine is not the major factor underlying the spectrum of PPPD symptoms in the general population.ConclusionWe found high levels of PPPD symptoms in nonclinical populations, suggesting that PPPD is a spectrum that preexists in the population, rather than only being a consequence of vestibular insult. Atypical visuo-vestibular processing predisposes some individuals to visually induced dizziness, which is then exacerbated should vestibular insult (or more generalized insult) occur.

Satisfaction and perceptions of research participants in clinical and translational studies: An urban multi-institution with CTSA

Purpose:To examine research participants’ levels of satisfaction and perceptions and aid researchers to better engage research volunteers from all racial and ethnic populations in clinical trials. A participant satisfaction survey was developed that focused on three domains to reflect satisfaction with delivery of care, environment, and center operations. In addition, the survey contained open-ended questions to reflect overall experiences and perceptions. Two hundred and seventy-eight participants (55% African American and 29% non-Hispanic Whites) with an average age of 52 years completed the survey.Results:The results indicated that the majority of the participants rated their satisfaction very highly across all domains. Ninety percent stated they were very satisfied/satisfied or very strongly agreed/agreed in the three domains. Obtaining high-quality care/access to health care professionals (60%), learning more about their illness/disease (60%), and helping others (57%) were noted as important factors in choosing to participate in a trial. Regarding overall experience, majority of respondents stated that friendliness, expertise of staff, learning more about their disease, and contributing to science were important. Further, financial compensation was not a primary motivation for participation. A majority of participants stated that they would participate in future studies and would recommend a friend or a family member to participate in clinical trials.Conclusions:The findings indicate that the degree of satisfaction with the research staff and with the specific trial itself are important determinants for enrolling, completing a study, and for participating in future trials.