DOS 741 - Week 2 Discussion
Reflecting on the quote above, why do you think more people don't participate in clinical trials?
Initial Post: Participation Rates in Clinical Trials
Clinical trials are a critical source of new knowledge for the improvement of cancer care. Testing a drug or treatment technique on animals or on human tissue cultures may provide some limited data about toxicities or effects on cellular processes, but they can not take the place of tests on an actual human patient, where the complex interlinkages of biological processes and disease progression may provide very different data. The participation rate in clinical trials varies drastically between pediatric and adult patient; more than 60% of pediatric patients participate in clinical trials while only 3% of adults participate.1
This wide disparity likely had several factors influencing it. Many adults report not being aware that participation in a clinical trial was an option, and many say that they would have participated if they had known it was an option.1 The high participation of children could be related to the common practice of referring children to specialized children's hospitals, which are often academic in nature and participate in NCI-sponsored research at a rate of about 90%.2 Simply being in an environment where research is on everyone's mind may lead to higher participation rate.
Among adults who are aware of clinical trials, a focus group study revealed that the most common reasons to decline participation in clinical trials included fear of person harm, uncertainty about the study outcome, and unwillingness to take on the extra burden of participation such as additional appointments and years of followup.3 On the other hand, the most commonly cited reasons to participate were a sense of altruism, a hope for personal benefit, and a desire to advance research. People are often willing to participate in research if they know that it is available, so increasing participation rate may be an information availability problem more than a fundamental flaw in the population itself.
- Lenards N. Protocols and Studies: Clinical Trials. [Softchalk]. La Crosse, WI: UW-L Medical Dosimetry Program; 2010.
- Kufe DW, Pollock RE, Weichselbaum RR et al, eds. Cancer Medicine 6. Hamilton, ON: BC Decker; 2003.
- Keusch F, Rao R, Chang L, Lepkowski J, Reddy P, Choi SW. Participation in clinical research: perspectives of adult patients and parents of pediatric patients undergoing hematopoietic stem cell transplantation. Biol Blood Marrow Transplant. 2014;20(10):1604-11. http://dx.doi.org/10.1016/j.bbmt.2014.06.020