Older Adults' Perspectives on Clinical Research: A Focus Group and Survey Study

Abstract

Objectives Clinical trials can benefit from the patient perspectives to inform their design, such as choice of outcome measures. We engaged older adults in focus groups and surveys to get their perspective regarding needs in clinical research. The goal was to inform the development of a new clinical trial of medication strategies for treatment-resistant depression in older adults. Methods Older adults with depression participated in focus groups and a subsequent survey in St. Louis and New York. They were queried regarding research design features including outcomes, clinical management, mobile technology and iPad-administered assessments, the collection of DNA, and the receipt of their personal results. Results Patients told us: (1) psychological well-being and symptomatic remission are outcomes that matter to them; (2) it is important to measure not only benefits but risks (such as risk of falling) of medications; (3) for pragmatic trials in clinical settings, the research team should provide support to clinicians to ensure that medications are properly prescribed; (4) technology-based assessments are acceptable but there were concerns about data security and burden; (5) DNA testing is very important if it could improve precision care; (6) they want to receive aggregate findings and their own personal results at the end of the study. Conclusions Patients gave useful and wide-ranging guidance regarding clinical and comparative effectiveness research in older adults. We discuss these findings with the goal of making the next generation of geriatric studies more impactful and patient-centered.

Non-pharmacological interventions for depression/anxiety in older adults with physical comorbidities affecting functioning: systematic review and meta-analysis

“…Implications for research PST showed positive short-term effects for reducing depressive symptoms, although it did not show effects upon other outcomes. Large scale RCTs, therefore, need to be powered to assess the effects of PST upon a more comprehensive set of outcomes more relevant to older people, particularly functioning (a key frailty outcome) (Ferrucci et al, 2004) and quality of life (Lenze et al, 2016), especially in the long term. Evaluation of hospitalizations, social care use, and cost-effectiveness is also vital to assist commissioning decisions, as home-based services are potentially costly but may deliver long-term costsavings in health or social care use.…”

Change in patient‐centered outcomes of psychological well‐being, sleep, and suicidality following treatment with intravenous ketamine for late‐life treatment‐resistant depression

“…Psychological well‐being has been identified, along with symptomatic remission and side effects on sleep, as being one of the most important outcomes by patients suffering from depression 9,45 . Our participants experienced an 8.9 T‐score increase in overall psychological well‐being with 4 weeks of treatment with IV ketamine.…”

“…Psychological well-being has been identified, along with symptomatic remission and side effects on sleep, as being one of the most important outcomes by patients suffering from depression. 9,45 Our participants experienced an 8.9 T-score increase in overall psychological well-being with 4 weeks of treatment with IV ketamine. In a recent large comparative study of antidepressant pharmacotherapy in late-life TRD conducted by the same investigators using the same measure of psychological well-being, participants experienced increases of 4.1, 3.7, and 2.6 over 10 weeks of treatment with aripiprazole, bupropion, and lithium, respectively.…”

“…In addition to remission of depression, other outcomes are important for patients with depression, in particular those with TRD. For example, in a recent survey, older adults with TRD were asked what outcomes are most important to them 9 . Responders identified psychological wellbeing, minimizing adverse effects, particularly effects on sleep, and overall remission of depression as most important.…”

Stopping Cognitive Decline in Patients With Late-Life Depression: A New Front in the Fight Against Dementia

“…Participants are followed longitudinally, tracking traditional depressive symptom outcomes as well as critical geriatric outcomes, such as falls, based on perspectives from older adults with depression. 64…”