Establishing the motivations of patients with dementia and cognitive impairment and their carers in joining a dementia research register (DemReg)

Avent, Cerian; Curry, Lisa; Gregory, Sarah; Marquardt, Sonia; Pae, Lauren; Wilson, Danielle; Ritchie, Karen; Ritchie, Craig W.

doi:10.1017/s1041610213000252

Cited by 15 publications

(14 citation statements)

References 12 publications

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“…The current study showed that individuals were more likely to enroll in research studies when they believed that their participation would help improve the health of others and themselves, as well as learn about their health. These findings are congruent with those of prior studies examining the decision-making of both AD patients and caregivers, two of which found that the main reasons patients joined a dementia registry, were to help others (44% of patients) and themselves (29%) [ 21 ], [ 23 ]. Similar to previous work, individuals in the current study were less likely to enroll if participation would require significant amounts of time and traveling (i.e., traveling to the study site several times per week) [ 14 ], [ 34 ].…”

Section: Discussionsupporting

confidence: 89%

“…However, other barriers are related to an individual’s interest in a study and decision to enroll or decline participation. For example, fewer positive attitudes towards research and an aversion to drug-related side effects have been associated with disinterest in clinical trial participation [ 11 ], [ 13 ], [ 21 – 23 ]. In this study, we explored how interest in pharmaceutical trials compared with interest in clinical research studies with different characteristics, including studies using other types of interventions.…”

Section: Discussionmentioning

confidence: 99%

“…Participants and caregivers who participate in AD research, including clinical drug trials, most commonly cite the potential for direct benefits and a desire to help others as reasons for participation [ 21 – 23 ]. Among those already enrolled in an AD research registry, more favorable attitudes toward research was associated with a larger number of positive responses to being approached about research studies [ 24 ].…”

Section: Introductionmentioning

confidence: 99%

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I'd Do Anything for Research, But I Won't Do That: Interest in Pharmacological Interventions in Older Adults Enrolled in a Longitudinal Aging Study

2016

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Alzheimer’s disease (AD) ranks as the 6th leading cause of death in the United States, yet unlike other diseases in this category, there are no disease-modifying medications for AD. Currently there is significant interest in exploring the benefits of pharmacological treatment before the onset of dementia (e.g., in those with mild cognitive impairment); however, recruitment for such studies is challenging. The current study examined interest in pharmacological intervention trials relative to other types of clinical interventions. A total of 67 non-demented older adults enrolled in a longitudinal cognitive aging study completed a questionnaire assessing interest in participating in a variety of hypothetical research study designs. Consistent with past research, results showed that the opportunities for participants to advance science, receive feedback about their current health, and help themselves or others, were associated with increased interest in clinical trial participation. Some factors were not associated with change in interest (e.g., a doctor not recommending participation) while others were associated with decreased interest (e.g., having to come in for multiple visits each week). Relative to other types of interventions, pharmacological intervention trials were associated with the least interest in participation, despite pharmacological interventions being rated as more likely to result in AD treatment. Decreased interest was not predicted by subjective memory concerns, number of current medications, cardiovascular risk, or beliefs about the likely success of pharmacological treatments. These results highlight the challenges faced by researchers investigating pharmacological treatments in non-demented older individuals, and suggest future research could contribute to more effective ways of recruiting participants in AD-related clinical trials.

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Section: Discussionsupporting

confidence: 89%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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I'd Do Anything for Research, But I Won't Do That: Interest in Pharmacological Interventions in Older Adults Enrolled in a Longitudinal Aging Study

2016

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“…Cronbach's α was good for all four factor-based scores, as shown in the bottom row in table 1 . As in some other studies, 40 monetary reward was not rated to be very important and did not load uniquely on any factor. Time and effort for participation also did not load uniquely on a single factor, although the length of the study did load on the who and what factor.…”

Section: Resultsmentioning

confidence: 67%

Principal components analysis to identify influences on research communication and engagement during an environmental disaster

et al. 2016

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ObjectivesTo discern community attitudes towards research engagement in Libby, Montana, the only Superfund site for which a public health emergency has been declared.Study designSurvey study of convenience samples of residents near the Libby, Montana Superfund site.ParticipantsResidents of the Libby, Montana area were recruited from a local retail establishment (N=120, survey 1) or a community event (N=127, survey 2).MeasuresTwo surveys were developed in consultation with a Community Advisory Panel.ResultsPrincipal components of survey 1 showed four dimensions of community members' attitudes towards research engagement: (1) researcher communication and contributions to the community, (2) identity and affiliation of the researchers requesting participation, (3) potential personal barriers, including data confidentiality, painful or invasive procedures and effects on health insurance and (4) research benefits for the community, oneself or family. The score on the first factor was positively related to desire to participate in research (r=0.31, p=0.01). Scores on factors 2 and 3 were higher for those with diagnosis of asbestos-related disease (ARD) in the family (Cohen's d=0.41, 0.57). Survey 2 also found more positive attitudes towards research when a family member had ARD (Cohen's d=0.48).ConclusionsPrincipal components analysis shows different dimensions of attitudes towards research engagement. The different dimensions are related to community members' desire to be invited to participate in research, awareness of past research in the community and having been screened or diagnosed with a health condition related to the Superfund contaminant.

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“…For example, participation may yield positive psychological impact on self-confidence, self-worth and the perceived benefit that the volunteer provides societal value [41] and even free physical exam and testing. In addition, it has also been shown that altruism (aspirational benefit) – that is, potential benefit to their relatives, to future sufferers or to society – also may be a perceived benefit of entering a clinical trial [42]. …”

Section: The Ethical Challengesmentioning

confidence: 99%

Ethical challenges in preclinical Alzheimer's disease observational studies and trials: Results of the Barcelona summit

Molinuevo

Camı́

Carné

et al. 2016

Alzheimer's & Dementia

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Alzheimer’s disease (AD) is among the most significant healthcare burdens. Disappointing results from clinical trials in late-stage AD persons combined with hopeful results from trials in persons with early-stage suggest that research in the preclinical stage of AD is necessary to define an optimal therapeutic success window. We review the justification for conducting trials in the preclinical stage and highlight novel ethical challenges that arise and are related to determining appropriate risk-benefit ratios and disclosing individuals’ biomarker status. We propose that to conduct clinical trials with these participants, we need to improve public understanding of AD using unified vocabulary, resolve the acceptable risk-benefit ratio in asymptomatic participants and disclose or not biomarker status with attention to study type (observational studies versus clinical trials). Overcoming these challenges will justify clinical trials in preclinical AD at the societal level and aid to the development of societal and legal support for trial participants.

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Establishing the motivations of patients with dementia and cognitive impairment and their carers in joining a dementia research register (DemReg)

Cited by 15 publications

References 12 publications

I'd Do Anything for Research, But I Won't Do That: Interest in Pharmacological Interventions in Older Adults Enrolled in a Longitudinal Aging Study

I'd Do Anything for Research, But I Won't Do That: Interest in Pharmacological Interventions in Older Adults Enrolled in a Longitudinal Aging Study

Principal components analysis to identify influences on research communication and engagement during an environmental disaster

Ethical challenges in preclinical Alzheimer's disease observational studies and trials: Results of the Barcelona summit

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