Guest Director's Update
Improving Delivery of Quality Cancer Care
During a recent meeting with NCI-funded investigators at Memorial Sloan-Kettering Cancer Center in New York, we saw an older gentleman sitting in the waiting room, his wife by his side, with a small tablet PC on his lap. He was, we learned, completing a questionnaire about any symptoms or side effects he was having from the treatment he was undergoing for metastatic prostate cancer.
“Why are they asking me all of these questions?” he wondered aloud.
Because, we replied, otherwise he might not volunteer the information to the treating oncology staff.
His wife chimed in. “That’s right. He would never tell them these things. He wouldn’t want to bother them with it.”
The conversation affirmed an important fact: Patients often don’t report, or tend to underreport, the problems they are experiencing as a result of their cancer treatment or because of their underlying cancer. Unless, of course, they are asked. Only if a problem is identified can a solution be delivered, or at the very least sought out.
Although palliative care is often equated with end-of-life care, they are not the same. Palliative care is about helping patients maneuver through the travails of cancer diagnosis and treatment, regardless of whether they have early-stage cancer that is highly curable or more advanced disease for which the treatment goals are extending survival as long as possible with as good a quality of life as possible. And according to a recent review we conducted, efforts to achieve survival with good quality of life are progressing, with clinical trials that better capture patients’ experiences during their treatment. That information, in turn, is improving our ability to help patients manage quality-of-life issues, often through palliative care services.
To conduct the review, we looked at NCI-sponsored phase III clinical trials of the four major cancers (breast, prostate, colorectal, and lung) that were published or launched over the last 2 decades to assess their use of health-related quality of life (HRQOL) measures. These measures assess changes in patients’ health status—aside from their underlying cancer—as a result of their treatment, such as changes in bowel function, fatigue, or neuropathy (tingling or burning sensations in the hands or feet, numbness in certain areas, among other things). Several clear trends emerged.
For instance, over time, the number of measures that patients are being asked to assess, often called patient-reported outcomes, have increased. And, second, more trials have begun to shift from global HRQOL measurements to more symptom-specific measures, such as sexual function after prostatectomy.
This shift is important, because while patients may report that, overall, treatment has not altered their health that much, when asked about specific symptoms that can have a significant impact on their day-to-day lives, they are more likely to report them. For example, in one trial that tested two different adjuvant chemotherapy regimens in patients with stage II or III colon cancer, the trial investigators learned that there were significant differences in the impact of the two treatments on patients’ reports of weakness and hand/foot pain related to cold. Having reliable information about symptoms can allow oncology professionals to prepare patients for what they may expect from given treatments and, as we gain more information and experience with different treatment regimens, to learn how these symptoms can be effectively managed or perhaps prevented altogether.
Unfortunately, progress has lagged in developing evidence-based treatments for symptoms and toxicities related to different cancer therapies. In many cases, such as the skin toxicities associated with the use of EGFR inhibitors, we still need to better understand why, at a biologic or physiologic level, patients experience these toxicities so that treatment options that will not interfere with cancer therapy can be developed and tested.
Some studies directly testing palliative treatments, including groundbreaking work by Dr. Betty Ferrell and colleagues at City of Hope cancer center, are already moving ahead. And we eventually hope to begin incorporating palliative care studies into randomized trials of new cancer therapies, something that has been a matter of much discussion and that we will continue to explore at NCI and with clinical trial investigators.
We are also seeing a growing interest in and support for palliative care training programs. So, as we develop more evidence-based treatments for the broad-ranging effects of cancer therapies, we will have a more highly trained workforce that can work in collaboration with treating oncologists to ensure that they are effectively delivered.
Overall, we are clearly witnessing a transition in clinical cancer research, where a higher priority is being placed on gaining the information and taking the steps needed to more effectively treat the whole patient. And that is very encouraging. Because, of course, we want to save lives—as many as possible. But if we truly believe in the idea of personalized medicine, then we must embrace the notion that cancer treatment and a poor quality of life do not go hand-in-hand.
Dr. Ann O’Mara
Head of Palliative Care Research, Community Oncology and Preventive Trials Research Group
NCI Division of Cancer Prevention
Andrea M. Denicoff
Nurse Consultant, Clinical Investigations Branch, Cancer Therapy Evaluation Program
NCI Division of Cancer Treatment and Diagnosis