Maximizing clinical research participation in vulnerable older persons: identification of barriers and motivators.
OBJECTIVE
To identify barriers and motivators to participation in long-term clinical research by high-risk elderly people and to develop procedures to maximize recruitment and retention.


METHODS
Quantitative and qualitative survey.


METHODS
Academic primary care medicine and pre-anesthesia testing clinics.


METHODS
Fifty patients aged 70 and older, including 25 medical patients at high risk of hospitalization and 25 patients with planned major surgery.


METHODS
Fifteen- to 20-minute interviews involved open- and closed-ended questions guided by an in-depth script. Two planned study protocols were presented to each participant. Both involved serial neuropsychological assessments, blood testing, and magnetic resonance brain imaging (MRI); one added lumbar puncture (LP). Participants were asked whether they would be willing to participate in these protocols, rated barriers and incentives to participation, and were probed with open-ended questions.


RESULTS
Of 50 participants (average age 78, 44% male, 40% nonwhite), 32 (64%) expressed willingness to participate in the LP-containing protocol, with LP cited as the strongest disincentive. Thirty-eight (76%) expressed willingness to participate in the protocol without LP, with phlebotomy and long interviews cited as the strongest disincentives. Altruism was a strong motivator for participation, whereas transportation was a major barrier. Study visits at home, flexible appointment times, assessments shorter than 75 minutes, and providing transportation and free parking were strategies developed to maximize study participation.


CONCLUSIONS
Vulnerable elderly people expressed a high rate of willingness to participate in an 18-month prospective study. Participants identified incentives and barriers that enabled investigators to develop procedures to maximize recruitment and retention.
Marcantonio
Edward R
ER
Department of Medicine, Beth Israel Deaconess Medical Center, harvard Medical School, Boston, Massachusetts 02446, USA. emarcant@bidmc
Aneja
Jasneet
J
Jones
Richard N
RN
Alsop
David C
DC
Fong
Tamara G
TG
Crosby
Gregory J
GJ
Culley
Deborah J
DJ
Cupples
L Adrienne
LA
Inouye
Sharon K
SK
D000368:Aged; D000369:Aged, 80 and over; D035843:Biomedical Research; D005260:Female; D006306:Health Surveys; D006801:Humans; D007406:Interview, Psychological; D008279:Magnetic Resonance Imaging; D008297:Male; D009042:Motivation; D009483:Neuropsychological Tests; D010342:Patient Acceptance of Health Care / Q000523:psychology; D018579:Patient Selection; D018962:Phlebotomy / Q000523:psychology; D013129:Spinal Puncture / Q000523:psychology