And there’s something else: Clinical tests don’t measure the symptoms that trouble and debilitate arthritis patients most, such as fatigue, sleep disturbance, and depression.
This is where PRO comes in.
Asking patients to report on how they feel and on its impact on their daily lives—not only during doctor appointments, but on an ongoing basis—reveals a more accurate picture of how a disease is behaving and progressing, how well treatment is working, and how effectively the disease is being managed.
“What’s exciting is that PRO complement objective clinical measures, like lab data and swollen joint counts done by your doctor, to tell the true story of how you’re doing as a patient,” says Seth Ginsberg, President of CreakyJoints and an arthritis patient himself. “It’s like adding missing chapters to a book.”
To gain insight into the importance of PRO, CreakyJoints talked with Clifton O. Bingham, III, M.D., Susan Bartlett, Ph.D., and Victoria Ruffing, R.N., at the Johns Hopkins Arthritis Center, who are championing a movement toward increasing and enhancing the use of PRO in arthritis research and treatment.
“We are learning more and more that patients have other concerns beyond pain and physical function they’d like to communicate to their physicians,” Dr. Bingham says. Bingham and his group are studying PRO in a pilot project funded by the Patient-Centered Outcomes Research Institute (PCORI). “PRO is a way of collecting information in a standardized manner that better reflects what patients care about.”
Dr. Bartlett, on faculty at both Johns Hopkins and McGill University, adds “There’s been a huge shift in the last ten years as we understand that patients have a unique perspective on their disease and can provide information not available anywhere else. If you want to know how the patient is doing, you have to ask the patient.
“For instance, what patients find most disabling is fatigue,” Dr. Bartlett notes. “It also seems to be a sensitive indicator for rheumatoid arthritis. If a person’s fatigue level goes up, it reflects what else is going on—pain, not sleeping well, mood shifts—but most doctors don’t ask about fatigue.”
She offers a second example. “Patients experience flares more often than we [doctors and researchers] believed,” she says. “They get through a difficult couple of days and they move on. People are hard-wired not to remember episodes of pain. Once you get past them, you forget. Doctors don’t routinely ask how a patient’s been between visits, and patients tell us they don’t want to complain to their doctors so these episodes go unreported.”
This, she notes, is a big problem. “When you’re experiencing flares, that’s when damage is occurring to the joints,” she says. If you’re not keeping track of your flares—when, how often, and under what circumstances they occur—you’re missing a vital opportunity to understand your arthritis and to help your rheumatologist devise a plan to treat it.
Perhaps more importantly, Victoria Ruffing points out, such a truly comprehensive treatment plan will include “what the patient needs, not just what the disease needs.” It’s holistic, it’s realistic, it’s sensible, and practical.
This is where you come in.
With the creation of the Arthritis Power ™ research registry and the Arthritis Power app (developed with support from PCORI and in cooperation with the University of Alabama at Birmingham), CreakyJoints is encouraging arthritis patients to become part of the PRO movement. Simply join the Arthritis Power registry, download the app, and begin reporting on various aspects of your arthritis—the things your doctor typically asks about and other things that might be overlooked. The more regularly you report (we recommend weekly), the more clearly a picture emerges of your arthritis, how it’s affecting you, and how your treatment is affecting it.
In addition to Arthritis Power, CreakyJoints will be working with the Johns Hopkins team to better understand PRO by finding out what levels of symptoms and changes in PRO should trigger an immediate discussion between a patient and her doctor.
“The thing about arthritis is it’s not ‘one size fits all,’” Victoria Ruffing explains. “PRO focuses on treating patients as individuals, not as ‘RA’ or ‘PsA.’ For instance, the waxing and waning of your pain may have a pattern that we can identify from the PRO and go on to address.”
Keeping track of information such as fatigue, activity participation, sleep patterns, and changes in mood, might even help anticipate and prevent flares. “PRO will help us develop tools to identify when your disease is at a level you can manage and when it reaches the tipping point where your doctor needs to make changes,” Dr. Bartlett adds. “We hope it will lead to better estimates of what’s normal for people with RA and what are critical thresholds where we need to pay attention and take action. We want to catch things early. The longer you wait, the harder it is to get things back in control.”
This is what you can do now.
When you join Arthritis Power and download the app from CreakyJoints, you’ll be asked to complete questionnaires from the PROMIS (Patient-Reported Outcomes Measurement Information System) developed by the National Institutes of Health. Your responses will be logged and tracked, effectively compiling a journal of your arthritis and the characteristics that are unique to your personal experience with the disease. Use the app to chart your progress and look for patterns in the way your arthritis behaves. Share the information with your rheumatologist to give him or her a clearer picture of what’s happening with you between office visits.
From time to time, Arthritis Power will give you the option to participate in studies and surveys that are part of research projects conducted at universities and hospitals. Opt in or opt out; it’s up to you.
Every person’s experience is valid and important, no matter what form of arthritis you have; no matter whether you’re newly diagnosed or an arthritis veteran; no matter what medication you’re taking; even if—in fact, especially if—you’re in remission. (People in remission are of special interest to researchers because they’re underrepresented in survey data.)
To register for Arthritis Power, visit arthritispower.creakyjoints.org.