Letter of Response: Disregarding clinical trial-based patient-reported outcomes is unwarranted: Five advances to substantiate the scientific stringency of quality-of-life measurement

Dear Dr Sprangers;

I want to express my appreciation for your paper detailing these Patient and research issues which have been outstanding and often unheeded far too long. Unfortunately, I must add, even as we speak. These issues have been of great concern to our cancer communities over much time. Without the inclusion of Patients in all that affects the research, at and as the bottom line issue, the value and efforts are, yes, meaningless. Patient QOL measurements, need to be addressed, so that the real life issues are not censured through statistical analyses and re-interpretation.

Without an emphasis encompassing integrity and ethics, if not a moral obligation, QOL research and all research, is futile. It is one of our largest failings. I have never found a way to quite understand how we have gotten to this place, not only in research but often times in practice.

I do see glimmers of hope, but over time these 'glimmers' have been replaced with consistently witnessing, as a patient/survivour, much suffering combined with a profess lack of urgency. While understanding of course that the specific issue of Patient QOL does not operate in a silo, it is because we are.

Acknowledging special exceptions in clinical practice/s, when someone mentions: "I know how you feel" my response is quite simply this: "No, actually, you do not."

Thank you once again, I greatly appreciate your efforts.
Sandi Pniauskas
Canada
http://ovariancancerandus.blogspot.com

abstract:
http://tinyurl.com/ykmf39w

or:

http://informahealthcare.com/doi/abs/10.3109/02841860903440288?prevSearch=authorsfield%253A%2528Sprangers%252C%2BMirjam%2BA.%2BG.%2529&searchHistoryKey=