Assessment of perceived cost to the patient and other barriers to clinical trial participation.
OBJECTIVE
Less than 5% of patients with cancer participate in trials. Few studies have specifically addressed the role of cost to the patient as an influence on trial participation. Our main purpose was to determine the importance of added cost as a barrier to clinical trial participation in the community setting. Our secondary goal was to determine the most prevalent barriers to trial participation for patients.


METHODS
Four community practices in New England issued surveys to consecutive cohorts of patients with cancer. Patients were assessed for eligibility for clinical trials at their practice site. Trial-eligible patients who declined participation were asked to select reasons that contributed to their decision.


RESULTS
Surveys were issued to 1,755 patients. Seventy-one percent of all trial-eligible patients returned surveys. Forty-four percent of nonparticipating trial-eligible patients did not recall hearing about clinical trials from their provider. The most common reasons cited by trial-eligible patients for declining trial participation were fear of adverse effects (50%) and discomfort with random assignment (44%). Twenty-eight percent cited concerns about added cost, and 12% noted cost as the most important factor in their decision.


CONCLUSIONS
Concerns about adverse effects and random assignment were the most common reasons cited by patients declining trial participation in four community oncology practices in New England. Cost considerations were important for a significant proportion of these patients. Many patients eligible for trial participation were not informed by their provider about the availability of research trials.
New Hampshire Oncology Hematology, Hooksett; Seacoast Cancer Center-Wentworth Douglass Hospital, Dover, NH; Vermont Center for Cancer Medicine, Burlington, VT; and Maine Center for Cancer Medicine, Scarborough, ME.
Douglas J
DJ
Weckstein
Christian A
CA
Thomas
Ivette F
IF
Emery
Barbara F
BF
Shea
Alison
A
Fleury
Margaret E
ME
White
Elizabeth
E
Chase
Cindy
C
Robinson
Stacey
S
Frazier
Christine
C
Pilar