Who enrolls in observational end of life research? Report from the cultural variations in approaches to end of life study.
BACKGROUND
Response bias in end of life research is important though not well understood.


OBJECTIVE
To compare consenting advanced cancer patient participants and refusers in observational end of life research. We hypothesized that, compared with refusers, consenters would: 1) have a stronger belief in personal gain from research participation, 2) be more satisfied with their medical care, 3) be more satisfied with support from family and friends, and 4) be in less physical discomfort compared with refusers.


METHODS
Sixty eight patients consented to enroll in the 'parent' observational study. Thirty six patients refused to participate. Reasons for refusal were recorded verbatim and coded using qualitative techniques. Both patient consenters and patient refusers were asked the same questions regarding personal gain, satisfaction with medical care, family and social support, and physical discomfort.


RESULTS
Consenters believed that they had more to gain from participation in research compared with refusers (p = 0.04). Consenters felt that aches or pain were more of a problem for them compared with refusers (p < 0.001). Both satisfaction with medical care and with support from family and friends were similar between consenters and refusers.


CONCLUSIONS
Consenting study participants in observational research at end of life believe they have more to gain from study participation than do refusers. Contrary to our hypothesis, consenting participants were those who were experiencing greater physical discomfort compared to refusers.
Phipps
Etienne
E
Center for Urban Health Policy, Thomas Jefferson University, Office of Research and Technology, Philadelphia, Pennsylvania, USA. phippst@einstein.edu
Harris
Diana
D
Braitman
Leonard E
LE
Tester
William
W
Madison-Thompson
Nora
N
True
Gala
G
D018864:Cultural Diversity; D006801:Humans; D017060:Patient Satisfaction; D018579:Patient Selection; D013727:Terminal Care / Q000523:psychology*; D019452:Terminally Ill / Q000523:psychology*; D016312:Treatment Refusal / Q000523:psychology