Chapter 4: Outcomes Research

INTRODUCTION

In 2013, an estimated 1.7 million people in the United States will be newly diagnosed with cancer.¹ With advances in multidisciplinary care, there has been a consistent decline in cancer death rates. Over the past two decades 1,177,300 cancer deaths were averted.² However, cancer is still the second most common cause of death, exceeded only by heart disease, and accounts for nearly one of every four deaths in the United States.¹ The cost of cancer care is rising faster than the other sectors of medicine, having increased from $72 billion in 2004 to $125 billion in 2010; costs are expected to increase further 39% to $173 billion by 2020.³ Even with improving survival rates, there remain gaps in cancer care, with large variations in access, quality, and outcomes. Coupled with the rising costs of health care over the past decades, as well as the discordance between spending and the overall quality of care, cancer care has become increasingly scrutinized in an era of ongoing health care reform.⁴

Thus, there has become an increasing need for an integrated multidisciplinary field of inquiry that guides practice and policy toward providing high-quality care, focusing on effectiveness, efficiency, and costs. Outcomes research has emerged as a robust field of study, with a focus on improving health by evaluating all aspects of health care delivery.

The field of outcomes research has evolved significantly over the past decade that no single definition fully encompasses its broadening spectrum. In essence, outcomes research is “the study of the end results of health services that takes patients' experiences, preferences, and values into account and is intended to provide scientific evidence relating to decisions made by all who participate in health care.”⁵ In surgical oncology these end results include, but are not limited to “the 5 D's”: Death, Disability, Disease, Discomfort, and Dissatisfaction.

This chapter provides an overview of the history and significance of outcomes research, reviews the key study designs and outcome measures relevant to surgical oncology, and examines the multiple aspects of quality in cancer surgery. The intent is to understand the scope of outcomes research and its implications for the field of surgical oncology.

HISTORY

The earliest reports of “outcomes” can be traced back to the early 1900s. Hospitals were reporting how many patients they treated, but not how many patients benefited from treatment. Ernest Codman, an acknowledged founder of the outcomes movement, was the first American surgeon to follow the progress of patients through their recovery in a systematic manner.⁶ He kept track of his patients, for at least a year, via “End Result Cards” which contained basic demographic data on every patient, along with the diagnosis, the treatment rendered, and their outcomes. It was his lifelong pursuit to establish an “End Results System” to track the outcomes of patient treatments as an ...