As a rheumatoid arthritis patient, you probably care more about your daily experiences with pain and fatigue than you care about the precise number of swollen joints you have during a doctor’s appointment. A large portion of speakers at the American College of Rheumatology Conference this weekend feels the same way. The first two days of the conference included 20 speakers discussing the challenges and benefits of patient-centered and patient-reported outcomes.
What Patients Care About
Patient centered outcomes are precisely what they sound like- they are the outcomes that patients understand and care about most. Sometimes they differ from the ones doctors and researchers consider the most valuable ones to monitor. For example, many RA patients suffer from intense fatigue and would prefer a treatment that minimizes it. However, Saturday morning, one rheumatologist explained why she would rather not collect data on fatigue. “Let’s capture sleep, physical function, but not fatigue – because if a patient—like many lupus or fibromyalgia patients—has fatigue, there are not good solutions for what to do about it.” Not only is fatigue difficult to monitor, but it is also difficult to treat, which discourages doctors from monitoring it.
How Doctors and Researchers Understand Patient Needs
One approach to the problem of capturing and quantifying patient centered outcomes like fatigue, is employing measures called patient reported outcomes. These are the types of symptoms or feelings that a patient can relay directly to a doctor. Along with the familiar tests for physical and biological signs of disease severity, researchers are looking to collect valuable data regarding the patient’s physical, mental, and social quality of life, directly from the patient. The problem is that all patients are different. If a doctor or researcher just asks the patients how they are doing, the answers would be extremely difficult to compare to each other. How can you quantify fatigue?