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P3–251: Why they stay: Understanding participant retention in Alzheimer's disease research
Author(s) -
Geramian Helene,
Neugroschl Judith,
McGovern Cleopatra,
Benson Gloria,
Creighton Judy,
Lopez Sabrina,
Sano Mary,
Luo Xiaodong,
Sewell Margaret
Publication year - 2013
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2013.05.1325
Subject(s) - disease , empowerment , medicine , dementia , family caregivers , psychology , clinical trial , gerontology , political science , law
Background:Although recruitment is a major challenge to successful completion of clinical trials, retention of subjects in longitudinal studies is also challenging. Retention in Alzheimer’s disease (AD) trials presents a unique set of difficulties as investigators need to work with both patients and caregivers. There is little data on this topic. To begin to understand factors involved in retention we conducted surveys with subjects and caregivers who have been long term participants in our Alzheimer Disease Research Center.Methods: Fifty three individuals from the Mount Sinai Alzheimer’s Disease Research Center (ADRC) (33 subjects ranging from normal to dementia and 20 study partners who had been in the ADRC for more than one year) were interviewed fromAugust 2012 to January 2013. Individuals were asked, "We are interested in identifying reasons why research volunteers like you choose to continue participation over time..can you tell us your main reason(s) for staying?" Open ended responses were categorized and the pattern of responses from subjects and caregivers were tallied. Results: Eight categories were identified for the 82 responses: "concern about my health" (14 subjects), "value relationship with ’experts’ and staff over time" (10 subjects, 15 caregivers), "giving something of value to society" (9 subjects, 5 caregivers), "help to find a cure/better understand AD" (6 subjects, 6 caregivers), "value to future generations of my family" (5 subjects, 1 caregiver), "financial benefits" (2 subjects), "obligation" (3 subjects, 2 caregivers) and "empowerment" (4 caregivers). The most frequent type of response for subjects was "concern about my health" (28.6%), while for caregivers at 45.4% (and secondary response for participants at 20.4%) was "Value relationship with ’experts’ and staff over time". Notably, no caregivers reported financial benefits as an incentive; no subjects reported empowerment.Conclusions: This data provides insight into factors relevant to retention in research. This preliminary data suggests that retention efforts should be directed toward fostering strong relationships between research staff and study participants and reinforcing the opportunity to demonstrate altruism. They provide basis for developing a standardized questionnaire for further research to confirm these factors and to assess retention interventions.