Quality of Life

This is just an abstract or summary from an article, not the whole thing, but even a para graph says a lot.

Ethan Basch from Sloan-Kettering is the lead author on "Recommendations for Incorporating Patient-Reported Outcomes Into Clinical Comparative Effectiveness Research in Adult Oncology," published in the most recent Journal of Clinical Oncology.


"Patient-Reported Outcomes" are what they seem -- what the patient says the effects of a treatment are, in addition to more "objective" measures.

The article is recommending that these Patient-Reported Outcomes be included when results are reported for clinical trials. So while it's easy to report that a certain percentage of patients in a trial had a partial or complete response, and it's easy to report on certain side effects like hair loss, the authors of this article recommend that we try to do something harder: report on how individual patient's quality of life are affected.

That is indeed going to be hard, and among the nine key recommendations is "to assure that PRO measures used are valid, reliable, and sensitive in a comparable population"; in other words, to make sure that everyone is collecting the data in the same way, so things can be compared accurately.

 Especially with patients with a disease like Follicular Lymphoma (but really, with any cancer), when you're faced with a choice between a bunch of different treatments, it would be nice to say "I'm interested in making this thing go away, but I still want to be able to go to work." A stem cell transplant might have better overall survival numbers, but it might also knock you out of work for a while.  On the other hand, Bendamustine might not last a slong, but it won't have you flat on your back for quite as long. (I don't have the numbers for those two treatments in front of me, so don't take that as a recommendation, just an example.) It would be nice to have more information than just "percentage of patients who had a response" when we have to make that kind of decision.

It's a small step, but a necessary one. It will be interesting to see how it is received, and if researchers are comfortable with including data that's a little fuzzier than they might be used to.