As the statistician and Principal Investigator for the NWTS Late Effects Study, I sometimes receive e-mail from former Wilms tumor patients who have just been diagnosed with a second tumor or who have had a problem pregnancy. What many former patients fail to recognize is the importance of hearing also from the great majority of you who have not experienced problems with your health. This enables us to report to you and to the physicians who treated you, via articles in the medical literature, accurate information on rates of occurrence of second tumors, low birth weights and the other endpoints we track. Such rates consist of both a numerator and a denominator. The numerator is the number of cases (e.g., of a second tumor or a low birth weight baby) that occur before a certain age. The denominator is the much larger total number of former patients who have been followed through that same age. We can only include you in the denominator if we receive news from you regarding your health status on or after the age in question. If we hear more frequently from patients in the numerator, we overestimate the rate and make it appear that the medical conditions following diagnosis of and treatment for Wilms tumor are worse than they really are. This is sometimes known as the principle that “bad news travels fast”. It can lead physicians to make treatment decisions for their current patients based on wrong information.
Please help us make sure that the advice we give all Wilms tumor survivors is the best medical and health advice possible. I urge you to keep in touch with us on a regular, annual basis. While of course we need you to report any adverse medical condition, we also need to hear your good news – of your good health, marriage, pregnancy or the fact that you are still at the same address and receiving our newsletters. If for any reason you need a new copy of one of our forms, please download them from www.nwtsg.org. I hope to hear from you soon.
Yours sincerely,
Norman Breslow, Ph.D.
NWTS Statistician