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1.
J Prev Alzheimers Dis ; 11(3): 558-566, 2024.
Article in English | MEDLINE | ID: mdl-38706272

ABSTRACT

BACKGROUND: Clinical trial satisfaction is increasingly important for future trial designs and is associated with treatment adherence and willingness to enroll in future research studies or to recommend trial participation. In this post-trial survey, we examined participant satisfaction and attitudes toward future clinical trials in the Dominantly Inherited Alzheimer Network Trials Unit (DIAN-TU). METHODS: We developed an anonymous, participant satisfaction survey tailored to participants enrolled in the DIAN-TU-001 double-blind clinical trial of solanezumab or gantenerumab and requested that all study sites share the survey with their trial participants. A total of 194 participants enrolled in the trial at 24 study sites. We utilized regression analysis to explore the link between participants' clinical trial experiences, their satisfaction, and their willingness to participate in upcoming trials. RESULTS: Survey responses were received over a sixteen-month window during 2020-2021 from 58 participants representing 15 study sites. Notably, 96.5% of the survey respondents expressed high levels of satisfaction with the trial, 91.4% would recommend trial participation, and 96.5% were willing to enroll again. Age, gender, and education did not influence satisfaction levels. Participants reported enhanced medical care (70.7%) and pride in contributing to the DIAN-TU trial (84.5%). Satisfaction with personnel and procedures was high (98.3%). Respondents had a mean age of 48.7 years, with most being from North America and Western Europe, matching the trial's demographic distribution. Participants' decisions to learn their genetic status increased during the trial, and most participants endorsed considering future trial participation regardless of the DIAN-TU-001 trial outcome. CONCLUSION: Results suggest that DIAN-TU-001 participants who responded to the survey exhibited high motivation to participate in research, overall satisfaction with the clinical trial, and willingness to participate in research in the future, despite a long trial duration of 4-7 years with detailed annual clinical, cognitive, PET, MRI, and lumbar puncture assessments. Implementation of features that alleviate barriers and challenges to trial participation is like to have a high impact on trial satisfaction and reduce participant burden.


Subject(s)
Alzheimer Disease , Antibodies, Monoclonal, Humanized , Patient Satisfaction , Humans , Alzheimer Disease/drug therapy , Alzheimer Disease/psychology , Male , Female , Middle Aged , Antibodies, Monoclonal, Humanized/therapeutic use , Double-Blind Method , Adult , Surveys and Questionnaires , Clinical Trials as Topic
2.
J Affect Disord ; 190: 362-368, 2016 Jan 15.
Article in English | MEDLINE | ID: mdl-26544620

ABSTRACT

BACKGROUND: Current estimates of the prevalence of depression in later life mostly arise from studies carried out in Europe, North America and Asia. In this study we aimed to measure the prevalence of depression using a standardised method in a number of low and middle income countries (LMIC). METHODS: A one-phase cross-sectional survey involving over 17,000 participants aged 65 years and over living in urban and rural catchment areas in 13 sites from 9 countries (Cuba, Dominican Republic, Puerto Rico, Mexico, Venezuela, Peru, China, India and Nigeria). Depression was assessed and compared using ICD-10 and EURO-D criteria. RESULTS: Depression prevalence varied across sites according to diagnostic criteria. The lowest prevalence was observed for ICD-10 depressive episode (0.3 to 13.8%). When using the EURO-D depression scale, the prevalence was higher and ranged from 1.0% to 38.6%. The crude prevalence was particularly high in the Dominican Republic and in rural India. ICD-10 depression was also associated with increased age and being female. LIMITATIONS: Generalisability of findings outside of catchment areas is difficult to assess. CONCLUSIONS: Late life depression is burdensome, and common in LMIC. However its prevalence varies from culture to culture; its diagnosis poses a significant challenge and requires proper recognition of its expression.


Subject(s)
Cross-Cultural Comparison , Depression/epidemiology , Developing Countries/statistics & numerical data , Late Onset Disorders/epidemiology , Aged , Aged, 80 and over , China/epidemiology , Cross-Sectional Studies , Cuba/epidemiology , Dominican Republic/epidemiology , Female , Humans , India/epidemiology , Male , Mexico/epidemiology , Nigeria/epidemiology , Peru/epidemiology , Prevalence , Puerto Rico/epidemiology , Rural Population/statistics & numerical data , Venezuela/epidemiology
3.
Mt Sinai J Med ; 59(1): 57-60, 1992 Jan.
Article in English | MEDLINE | ID: mdl-1734240

ABSTRACT

We reviewed the clinical characteristics and outcome of cases of acute myocardial infarction occurring from January 1, 1985, through December 31, 1987, in the population of a long-term care institution for the elderly. The total number of patients in the series was 43. Comparisons were made between those patients transferred to a general acute-care hospital and those who remained at the facility. The most common initial symptoms of acute myocardial infarction in 32 of 48 patients were, in order, dyspnea, dizziness or syncope, precordial pain, and abdominal pain. Nine (of 43) patients were asymptomatic. In the 14 (of 43) patients transferred to an acute-care hospital, cardiac failure, arrhythmias, and cardiogenic shock were much more frequent than among those retained in the long-term care facility. We concluded that a high index of suspicion for the diagnosis of acute myocardial infarction in the institutionalized elderly is indicated. Patients with mild infarction can be retained in long-term care institutions; resulting mortality from cardiac disorders should be low in adequately staffed and equipped long-term care institutions.


Subject(s)
Homes for the Aged/statistics & numerical data , Myocardial Infarction/epidemiology , Nursing Homes/statistics & numerical data , Aged , Female , Hospitalization/statistics & numerical data , Humans , Long-Term Care , Male , Myocardial Infarction/mortality , Myocardial Infarction/nursing , New York City/epidemiology
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