Cancer Pain: Helping Patients Help Themselves
“About 50 percent of patients who are receiving outpatient therapy for cancer report moderate-to-severe pain. And as the disease progresses, as patients go into the terminal phases of their illness, 80 to 90 percent of those patients report moderate-to-severe pain,” explained Dr. Christine Miaskowski, professor of nursing at the University of California, San Francisco, at the NIH Pain Consortium’s first annual symposium, held April 17 - 18 at the NIH campus. “Those percentages…have not changed for 30 years.”
Dr. Miaskowski is one of a growing group of researchers who are focusing on patient education as an important component in the fight against cancer pain. In the past, most experimental behavioral interventions designed to improve the treatment of cancer pain have targeted physicians. “And doctors have been responsive,” said Dr. Miaskowski. “But the link between the prescription and what the patient is doing with it is the missing piece. You have to also educate the patient and their caregivers.”
“If a patient is terrified of becoming addicted, then it doesn’t matter if doctors are waiting in line to hand them pain pills - they’re not going to take them,” explained Dr. Betty Ferrell, a palliative-care researcher at City of Hope Comprehensive Cancer Center in Duarte, Calif., who is also working on education to improve pain treatment. “Overcoming fears and beliefs…is so important before you can move on to try to do something about managing a problem.”
Both researchers have developed education-based pain-management programs to be integrated into patients’ standard care regimens. In a recent randomized clinical trial, Dr. Miaskowski’s PRO-SELF Pain Control Program significantly decreased pain intensity scores and increased the number of appropriate analgesic prescriptions in a group of patients with pain from bone metastases. The PRO-SELF program is based on the concept of academic detailing, which individualizes a teaching program for each patient based on that person’s current knowledge and attitudes.
Patients in the PRO-SELF program are given a pain-control booklet, a pain-management diary, a script to help them communicate their pain-management needs, and a pillbox. After identifying the gaps in patients’ knowledge, a participating nurse coaches them on timing and frequency of medication intake, how to assess their own pain and response to the medication, how to prevent or treat side effects from pain medications, and how to communicate with their physician about their pain and treatment.
Although the program is still being refined, clinicians have already adapted parts of the PRO-SELF program to their practice, says Dr. Miaskowski. The next step, she explained, is to understand what “dose” of the intervention is most effective. “How long does it take for someone who is dealing with the cognitive questions about taking analgesics to process the information?”
In 2004, to encourage research into new methods to improve symptom management, NCI released a Request for Applications (RFA) titled Reducing Barriers to the Delivery of Symptom Management and Palliative Care. Dr. Ferrell is one of the investigators funded by that RFA. In her project, she and her colleagues have created a hospital-wide system called Passport to Comfort, which incorporates patient education into a comprehensive teaching program addressing patient, professional, and systems barriers to adequate symptom management within the cancer center.
“For example,” Dr. Ferrell explained, “a very common thing is that patients believe that if the pain is important then the doctor would ask about it. Patients also don’t want to distract the doctor from their underlying cancer. To fix that problem, we not only need to teach patients that their pain is important and that they need to let their doctor know about it, but to also coach physicians to broach these topics, because the physicians may be coming from a perspective of ‘if the patient has a problem, they’ll tell me about it.’”
In addition to incorporating coaching on pain and fatigue management into their clinic for both patients and physicians, City of Hope researchers have worked on increasing awareness within the hospital environment by, for example, placing signs in every examination room, which include: the Passport logo and the message, “We care about your comfort;” the pain and fatigue rating scales; and reminders for patients and physicians to discuss these issues.
Dr. Ferrell’s team is currently identifying the components of their system that are most effective, so they can be incorporated into a streamlined second phase. “One of the things NCI is interested in as we develop these interventions is the need to create models that can be replicated in other organizations, and models that are realistic, that can continue even when the study is over.”
“We are at a time in 2006 when we have a variety of medications, as well as complementary modalities to treat pain; however, many patients with chronic cancer pain remain undertreated,” said Dr. Ann Berger, chief of the Pain and Palliative Care Service at the NIH Clinical Center. “The barriers to proper care are many…and an important way of overcoming these barriers is to empower the patient and family to ask for what they need. Much like in the childbirth movement, when patients are empowered and request what they need, the health care system will ultimately be changed, and patients will have their pain adequately treated.”
By Sharon Reynolds