Hearsay and good intentions won’t suffice. If a new treatment is chosen for a patient with cancer, one must first have seen that the treatment is at least as efficient as the conventional treatment. And one must have looked at side effects and right dosages.
Seeing this, however, presupposes that some patients agree to test the treatment… before one has clearly seen its efficacy. This is done in so-called clinical trials arranged in phases where first side effects and dosages are studied, and finally efficacy is compared to conventional treatment.
This gives rise to questions: Why are some patients prepared not to be patients on the same conditions as other patients? Why are they prepared to test a treatment one hasn’t yet seen is most efficient?
Do they understand what they agree to participate in? Since they participate in a study of a new treatment, do they understand that in order to see its efficacy, some in the group will be given just the conventional treatment?
Tove Godskesen, PhD student at CRB, noticed that such questions were relatively unexamined in the context of Swedish clinical cancer trials. She therefore did a survey study with cancer patients in several Swedish phase 3 clinical trials (where experimental and conventional treatments are compared).
Godskesen’s study (done together with Mats G. Hansson, Peter Nygren, Karin Nordin and Ulrik Kihlbom) was recently published online in the European Journal of Cancer Care:
- “Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials”
The article contains many interesting findings. For example, patients-participants seemed generally to have understood the information about the “seeing” that they were willing to support by not being patients quite the same way as others.
Most important and salient, however, was that patients have two main motives for participating. They hope for a cure; and they wish to help future patients.
I would like to say: Patients hope that they will be given the new treatment already and that it will turn out to be more efficient than the conventional one. And they want to help future patients get the treatment that one has seen is most efficient.
Sight and future, patient role and research participant role, hope and altruism, in complex association.