We particularly focus on the information patients need to choose treatment, anticipate complications and fully participate in their care. Patient-reported information may directly help clinicians evaluate and improve their treatments. By better measuring the complex, profound impact of our treatments on patients, we can better provide humane, technically optimal, and cost-effective cancer care.
Measuring cancer outcomes uses methods with increasingly robust scientific foundations. In our work, we have investigated specific cancers, particularly prostate cancer, but also bladder and rectal cancer, clinical syndromes, such as fever and neutropenia after chemotherapy, and cancer treatments, including prostate cancer surgery, brachytherapy and proton radiation. While curing cancer remains the primary goal of cancer care, most tumors we treat medically will not be cured but rather palliated, and the increasingly powerful therapies we use have manifold effects we must manage carefully. Therefore, the importance of measuring cancer outcomes beyond traditional biological endpoints such as tumor shrinkage is more obvious. Patient-reported outcomes (PRO) are especially helpful to assess our success in achieving palliation and minimizing treatment toxicity.
Patients differ in the distress a particular dysfunction from cancer and its treatment causes. Using qualitative and quantitative survey research tools, we have developed validated instruments to explore and measure cancer patients' outcomes. Because patients respond more freely in questionnaires than to their physician's questions, we have been able to provide more accurate information to patients. For example, physicians report that nerve-sparing prostatectomy preserves potency in up to 85% of men, but fewer than 30% of patients reported adequate erections to us after such surgery. We have been able to define how various treatment-related symptoms vary by symptom and treatment over time, allowing patients to better understand the consequences of treatment options and to anticipate and adjust to complications that arise.
We have made innovative efforts to get more useful and rich information back to patients. Numbers and percentages are useful to researchers but not good enough for patients. We developed a technique to translate our numerical quality of life results into levels of function (normal, intermediate and poor), so that patients can better understand what lies in store for them after various prostate cancer treatments. Further, even when patients understand the likelihood of a complication, they may not fully understand its impact. We found that impotence affects men in complex ways: anxiety about sexual performance, social interactions with women, sexual fantasy, and gender-related traits and abilities. Similarly, urinary and bowel complications have complicated effects on men’s lives, and reporting other men’s experiences to newly diagnosed patients helps them make better decisions.
More recently, we have focused on developing ways to measure and improve patient-physician collaborative decision-making. We have developed tools to measure how patients process information about their clinical course, assess their decision-making up to 8 years after treatment, and whether they successfully included crucial information about bodily functioning in their decisions. We have adapted an intervention to support collaborative decision-making to prostate cancer. Our goal is to develop techniques to identify evidence of inadequate decision-making and test techniques to address it.
In ongoing research, we hope to develop new valid instruments to measure outcomes of other cancers, such as rectal cancer; to better understand what information patients need to make the best treatment choice and get it to them; to address problems arising from adverse socioeconomic position that affect decisions and outcomes; use patient-reported outcomes to measure and improve care; and use our results to improve communication between physicians and patients and other physicians.
James A. Talcott, MS, SM