Health care professionals are accustomed to using clinical practice guidelines to elucidate questions regarding cancer and its treatment. In a recent survey by the Association of Community Cancer Centers, 94% of physicians indicated that they refer to clinical practice guidelines when engaged in direct patient care. Since 1996, the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) have been recognized as an authoritative source of evidence-based recommendations for managing the vast majority of cancers. The NCCN Guidelines recommendations represent a distillation of up-to-date evidence evaluated by expert subspecialty clinicians organized into flow charts that follow the clinical decision-making process. Clinicians can go to the NCCN Guidelines to find out the current thinking of expert clinicians on a wide variety of issues and to find the information they need quickly and efficiently.
For someone diagnosed with cancer, the landscape looks different. The world changes dramatically. A body that has served well for decades suddenly seems far less reliable, and survival itself may be in question. Information that was at most peripheral to daily concerns suddenly takes on tremendous importance. The vocabulary is unfamiliar, almost a foreign language to some patients. What type of cancer is it? What is a primary site? Is it really the same type of cancer when it has spread to the lungs or the bones?
Decisions are needed regarding workup, primary therapy, and whether one treatment is better than the others. Decisions are also needed on where to be treated and by whom, and how to find a specialist and what kind, among many others. Patients are aware that some of these decisions might mean life or death, but, without knowledge and experience, they may not know which ones. It feels like an emergency. Surely there must be somewhere to get answers.