Susan Leonard's rare and aggressive inflammatory breast cancer and treatment left her with swelling all over her body, nerve damage and loss of her hair, fingernails and toenails. Her severe pain necessitated medication that made her sleep 12 hours a day.
Leonard couldn't function at work and couldn't fit into her clothes.
"I wanted to be lazy and hide. You don't want people to see your sadness and your crying," she said. "The physical pain turns your emotional life into turmoil."
Patients like Leonard drive home to physicians that there's more to treating cancer than surgically removing a tumor or pumping chemotherapy drugs into veins. Quality of life cannot be ignored, if for no other reason than it directly affects recovery. An accurate assessment also can be the basis of a treatment plan.
Researchers are working on ways to understand pain from the patient's perspective. They're hoping to develop a universal method to measure such symptoms as pain, fatigue and anxiety, and this month doctors will be able to go online for a free program to help them more accurately assess a patient's quality of life.
The efforts are being pushed by the National Institutes of Health as part of an initiative to better connect research with patient needs, though it remains to be seen how many doctors will use the new pain scale.
"Through this improved measurement system we will be able to personalize symptom care, particularly as cancer care becomes more personalized for each patient," said Dr. Lynne Wagner, a health psychologist at Northwestern University's Robert H. Lurie Comprehensive Cancer Center, who treats Leonard.
The measurement program, called PROMIS, allows doctors to create questionnaires from a database to assess the status of a patient's health. The questions are multiple-choice about levels of discomfort ranging from "none at all" to "excruciating." The test also asks questions like: Does your pain limit going out and enjoying time with your friends?
The system is adaptive and adjusts each new question based on the previous response. With one question you can get a general idea of a patient's discomfort and generally after seven or eight questions you get more precision, said David Cella, an investigator from Northwestern University who helped develop the program.
People have different thresholds of pain, making the usual method of asking how much it hurts relatively unhelpful for a doctor designing a treatment plan. But with the PROMIS questions, they can get a better sense of how a patient's life has been affected by their sickness. Wagner decided to help Leonard find ways to occupy her mind as a means of dealing with the pain. She suggested relaxation and deep breathing along with imagery. An example of imagery would be imagining the pain as a warm red color on your body being swept away by a cool blue cloud.
"Managing their pain is tremendously rewarding for a patient and gives them their life back," Wagner said.
Leonard is grateful she's had help dealing with the mental pain as well as the physical pain from her cancer, saying she thinks many doctors don't understand how distress can lead to isolation from friends and family.
"Not having the right attitude does little good to help with recovery," Leonard said. Addressing a patient's pain with PROMIS can help doctors "understand what people need to survive in life," she added.
The idea of measuring physical and mental pain in a universal way is relatively new; there's no standard.
"I think this is an idea whose time has come," said Dr. Albert Wu, a professor of health policy and management at Johns Hopkins University, who was not involved with the study.
"We are at a point where it is possible to measure health from the patient's point of view," Wu said, "and it's now very important that we take advantage of that knowledge."
Not having a universal system of measuring pain "has hampered our ability to communicate between doctors with different specialties at different institutions and doctors with their patients," Cella said.
Previous attempts at developing universal pain scales have gone nowhere since doctors prefer their own methods, Cella said. Only a few doctors at forward-thinking institutions have incorporated PROMIS into their clinical practices even though some 1,000 researchers are using it now, he said.
The National Institutes of Health is advertising PROMIS at meetings in hopes doctors and researchers will adopt the system. PROMIS, which has been in the works since 2004, also has the financial backing of NIH. Leonard said anything like PROMIS that can help doctors understand and better guide patients through their ordeals is infinitely important.
"Several of my doctors say that I'm the best actress they've ever seen," she said. "If you knew how I felt you'd be shocked. I've learned to put on a good face and how to deal with it.
"Cancer is the easiest part, life after cancer is the hard part."
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