Objective: To describe an interdisciplinary and methodological framework for applying single case study designs to self-experimentation in personalized health. The authors examine the framework's applicability to various health conditions and present an initial case study with irritable bowel syndrome (IBS).
Methods And Materials: An in-depth literature review was performed to develop the framework and to identify absolute and desired health condition requirements for the application of this framework. The authors developed mobile application prototypes, storyboards, and process flows of the framework using IBS as the case study. The authors conducted three focus groups and an online survey using a human-centered design approach for assessing the framework's feasibility.
Results: All 6 focus group participants had a positive view about our framework and volunteered to participate in future studies. Most stated they would trust the results because it was their own data being analyzed. They were most concerned about confounds, nonmeaningful measures, and erroneous assumptions on the timing of trigger effects. Survey respondents (N = 60) were more likely to be adherent to an 8- vs 12-day study length even if it meant lower confidence results.
Discussion: Implementation of the self-experimentation framework in a mobile application appears to be feasible for people with IBS. This framework can likely be applied to other health conditions. Considerations include the learning curve for teaching self-experimentation to non-experts and the challenges involved in operationalizing and customizing study designs.
Conclusion: Using mobile technology to guide people through self-experimentation to investigate health questions is a feasible and promising approach to advancing personalized health.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6095104 | PMC |
http://dx.doi.org/10.1093/jamia/ocv150 | DOI Listing |
Background: In Alzheimer's Disease trials, the Mini-Mental State Examination (MMSE) and Clinical Dementia Rating (CDR) are commonly utilized as inclusionary criteria at screening. These measures, however, do not always reaffirm inclusionary status at baseline. Score changes between screening and baseline visits may imply potential score inflation at screening leading to inappropriate participant enrollment.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, Netherlands.
Background: The first disease-modifying treatments (DMTs) for Alzheimer's disease (AD) have been approved in the USA, marking profound changes in AD-diagnosis and treatment. This will bring new challenges in terms of clinician-patient communication. We aimed to collect the perspectives of memory clinic professionals regarding the most important topics to address and what (tools) would support professionals and their patients and care partners to engage in a meaningful conversation on whether (or not) to initiate treatment.
View Article and Find Full Text PDFIntroduction: The United States is undergoing a demographic shift with increasing proportions of older adults. Currently, one in three older adults pass away with a form of Alzheimer's disease or related dementias (ADRD). This figure is higher in underrepresented and underserved groups including older adults in rural Appalachian communities.
View Article and Find Full Text PDFBackground: The LatAm-FINGERS trial marks a pioneering initiative as the first non-pharmacological clinical trial encompassing participants from 12 Latin American countries, including Argentina, Brazil, Bolivia, Chile, Colombia, Costa Rica, Ecuador, Dominican Republic, Mexico, Peru, Puerto Rico, and Uruguay. This initiative represents a significant advancement in promoting inclusivity and diversity in clinical trial recruitment, particularly in underserved populations.
Method: The LatAm-FINGERS trial is a multicenter randomized clinical trial evaluating a lifestyle intervention tailored for the Latin American population.
Background: It is essential that both drug and lifestyle-based interventions aimed at delaying the functional decline in conditions like Alzheimer's disease and related dementias (ADRDs) capture change in functioning that incorporates the person's voice. Such brain health priorities can vary across populations and it is unclear to what degree findings from the ePSOM program in the UK might apply to the US.
Methods: We conducted an online nationwide study to understand what matters to people aged 50 and older about their brain health in the US.
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