Roberta Simon, RN, Illinois
Research is an important aspect for the medical community in dealing with any health difficulty that has no previous history of known causes or treatments. Unfortunately, as we are all aware, post-polio syndrome falls into this category. Since many of us have been or will in the future be asked to participate in research, I think it is wise for us to consider a few questions and options.
Of course, the first consideration is what the physician conducting the research hopes to learn. You would also want to know if there is a risk to you by participating in the research and if there would be any charges to you or your insurance company. Most research is funded totally by either a grant or the institution conducting the research. All research plans must be reviewed by that institution's review board for the use of human subjects, so that they can evaluate the ethical use and the amount of risk to the prospective participant. These results should be available to you if you inquire.
You will also want to know how many visits the research will require and evaluate your personal situation to see if this is a possibility for you. Some research programs require only yearly evaluations. Others may require weekly or even more frequent visits. If this is the case, are you willing and able to cooperate? This follow-up is extremely important to the physician or institution, so try to be fair in evaluating this aspect.
Would the results of this research benefit your treatment in any way? Would it improve your function and slow the progression of post-polio syndrome? Or would it give clinical information that would be of benefit only to other clinicians trying to determine the cause of the problem? I do not mean to imply that this is not important, because answers often come from the knowledge gained by understanding the cause.
Lastly, but certainly not least, is the consideration, "Is this procedure invasive?" Muscle biopsies or spinal fluid studies are invasive and increase the risk to the subject. If you participate in such a study, you might want to be informed not only of the risks, but also who will finance the treatment and costs if complications occur. Exposure to radiation is also an important consideration. If this type of study is proposed, be certain to discuss it with your family physician or primary caregiver. If you are having numerous x-ray studies for other health problems, this may not be the study for you.
Research holds the key to understanding and treating post-polio syndrome, and we should all try to contribute in some small way to finding these answers. If you feel uncomfortable with participation in one research study, do not feel guilty or embarrassed to say no. There will be other possibilities, and perhaps another would be better for you. Remember: you are in control, and-the decision is yours.
©Post-Polio Health (ISSN 1066-5331), Vol. 6, No. 1, Winter 1990
Tagged as: research