Overview - Letter from the AANS / CNS Section on Tumors

Welcome | Letter from the Joint Section on Tumors AANS/CNS | Slideshow

Measuring outcomes for patients with malignant glioma has been a high priority project for the Tumor Section of the AANS and the CNS. We are happy to tell you that such a program has been initiated, and are pleased to attach the prototype of a data collection instrument that will allow reliable and validated outcome studies to be done on patients with malignant glioma.

We believe that all of the membership recognizes the importance of satisfactory outcome studies. They allow us to determine the state of the art, ranges of standard of practice, and benchmark the ability of individual neurosurgeons to obtain satisfactory outcomes for various diseases. Properly constructed outcomes studies consist of several components. There is a demographic component that allows a registry function to take place, an assessment of comorbidity and its influence on outcomes, an assessment of disease specific outcomes with regard to the goals of surgery and also the complications of management, and most importantly, an assessment of the quality of life and patient satisfaction. Most outcome studies should be designed also to allow for an assessment of cost and cost benefit of various types of treatment.

The outcomes instruments were developed in conjunction with Dr. Fred Anderson of the Center for Outcomes Research of the Department of Surgery at the University of Massachusetts. Dr. Anderson has significant experience in preparing outcome instruments for other disease entities, and they have been very successful. An Advisory Committee has been formed that is comprised of representatives from the Tumor Section of the AANS/CNS, the Society for Neuro-Oncology, and a panel of Neurosurgeons, Neuro-Oncologists, and Radiation Oncologists and Epidemiologists and a Neurophyschologist.

Financial support for this effort has been provided by Sanofi through an educational grant to the Center for Outcomes Research at the University of Massachusetts Medical Center, which will maintain the confidentiality of all patient, physician and hospital specific data collected in this project.

There are several phases of the outcome study. The attached instrument is designed for personal use by practicing neurosurgeons so that they can register and keep track of their glioma patients and perform their own outcome analyses. In addition, a pilot study which is multi-institutional, has been designed to collect and review data from a significant number of patients with malignant gliomas. This will provide validation of the analytical instrument and allow it to be perfected. It will also provide the benchmarks against which practicing neurosurgeons may gauge their own outcomes.

The goal is to enroll patients from 20-25 centers and to have the study completed within two years, with a meaningful interim analysis at one year. We are soliciting input from individual neurosurgeons and institutions that can provide significant numbers of newly diagnosed malignant glioma patients. It was the committee's decision that criteria for entry would include patients with malignant gliomas after first or second surgical procedures recognizing that many patients have an initial stereotactic biopsy and then have a more definitive resection shortly thereafter.

Please review and use the instrument. Comments and questions can be sent to the Tumor Section leadership. Those neurosurgeons who wish to volunteer to participate in the pilot study should fill out and return the enclosed reply card.

We are excited about the prospects for this outcomes study, and hope that it will be one of many successful efforts put forth by organized neurosurgery.

Sincerely,

Edward R. Laws, MD, FACS
President, AANS

Mark Bernstein, MD, FRCSC
Chairman
Section on Tumors, AANS/CNS