Demented patients' participation in a clinical trial: factors affecting the caregivers' decision

Proxy Decision-Making for Clinical Research in Nursing Home Residents with Dementia: A Qualitative Analysis

“…This study confirms previously defined aspects affecting proxy decision-making on research, such as the fear of side effects, 13 earlier preferences, 14 and the patient's disease stage. 15 Also more abstract proxy-related factors that we identified, including altruism, [16][17][18][19] trust, 17,19 and past experiences 13 accord with prior studies.…”

“…This study confirms previously defined aspects affecting proxy decision-making on research, such as the fear of side effects, 13 earlier preferences, 14 and the patient's disease stage. 15 Also more abstract proxy-related factors that we identified, including altruism, [16][17][18][19] trust, 17,19 and past experiences 13 accord with prior studies. Although corresponding with existing literature, these factors were to our knowledge not earlier recognized as an interconnected framework leading to an overall (modifiable) benefit-risk evaluation.…”

Why Participate in an Alzheimer’s Disease Clinical Trial? Is It of Benefit to Carers and Patients?

“…This study supports the findings of previous studies suggesting that research volunteers approach clinical trials altruistically (Elad et al, 2000;Madsen et al, 2000;Terenius, ZOOO), feel a need to d o anything possible for their relative (Karlawish et al, ZOOl), and view the research center as an important source of support and information for carers (Elad et al, 2000;Mastwyk et al, 2002). This study also adds to our knowledge by providing a profile of potential study participants and gives an indication of how t o make contact with research volunteers.…”

The attitudes of people with Huntington's disease and their carers to research

“…Study participants cited altruism and potential relief of symptoms as reasons for research participation, as also described in previous studies of individuals with Alzheimer's disease (Elad et al, 2000;Mastwyck et al, 2002). The word "guinea pig" was used by four service users to describe their research participation and trying something novel.…”