Measuring personal and functional changes in prostate cancer survivors: development and validation of the FADE data from the TROG 03.04 RADAR trial

Abstract

There are more survivors of prostate cancer (PCa) than any other cancer. Although there are a number of successful treatments for PCa such as prostatectomy, radiation therapy, hormone therapy or active surveillance (for men with low grade cancer that is monitored until there is evidence of need for curative treatment), there is evidence that each of these carries some adverse symptomatic side effects which last into 'survivorship', or at least 5 years post-diagnosis as defined by the American Cancer Society. These symptomatic side effects have been investigated by measures such as the EORTC QLQ PR-25 and associated scales, the National Comprehensive Cancer Network's Distress Thermometer Screening Tool and the Expanded Prostate Cancer Index Composite for Clinical Practice. Self-report scales that measure anxiety, depression and quality of life are also used when investigating the longer-term effects of PCa treatment upon survivors. However, all of these scales are focussed upon the side effects themselves or the final often adverse results of those side effects. While this is valuable information for treating the concerns these men have, there is some research that suggests a parallel focus upon the life changes that PCa patients have undergone and the decreases in functionality that they have experienced as a result of the symptomatic side effects may provide a linkage between the symptoms arising from treatment and the resultant anxiety/depression. From a behaviour analytic perspective, these changes represent loss of previously available sources of pleasure or the gaining of previously absent unpleasant consequences of PCa. There is a well-established literature on this kind of change in access to positive/negative experiences that demonstrates it to be a major pathway from stress to depression in general, and some evidence that it is significantly correlated with depression severity in PCa patients. Therefore, because there are many scales which measure treatment-related symptoms in PCa patients, plus others that assess resultant anxiety and/or depression, the field is open to development and evaluation of a scale that measures the steps between those symptoms and resulting anxiety/depression via assessment of the Personal Changes and consequent Functional Changes that PCa patients experience following diagnosis and treatment. These steps could provide focussed targets for interventions aimed at blocking the pathway between PCa symptoms and anxiety/depression.