By W. Benjamin Nowell, PhD, Co-Principal Investigator of ArthritisPower and Director, Patient-Centered Research, Global Healthy Living Foundation/CreakyJoints
It will come as no surprise that persistent pain is the chief symptom reported by people living with rheumatologic conditions including, but not limited to, osteoarthritis (OA) and rheumatoid arthritis (RA). Arthritis pain can lead to increased levels of disability and distress.
To some degree, arthritis patients become adept at managing pain through a combination of treatment strategies including prescription medications, physical therapy, exercise or stretching, and a diverse range of coping mechanisms like meditation and social support. Interestingly, there’s evidence that the people who most believe they can cope with arthritis pain tend to report less pain, pain-related disability, physical disability, and psychological distress.
Reporting arthritis pain to your doctor during an office visit is not always adequate to address it. No two patients are completely alike. Even patients who appear similar in terms of disease severity and progression, as measured by objective radiography or serology indicators, may be quite different in their subjective experience of pain. It can be demoralizing and frustrating to live with chronic arthritis pain, since it is often invisible and challenging to treat, especially when you sense that your personal support network cannot fully grasp how you are feeling from day to day.
The good news is there are a few simple things you can do to get more engaged in your care and to help your providers and loved ones “get” you.
The engaged patient
Engaged patients take proactive, patient-centered steps to understand and mark out a treatment plan in partnership with their health care team. (The health care team usually includes a physician or nurse practitioner, but may also include other providers like nurses, nutritionists, physical or occupational therapists, and mental health professionals.)
First, you can better understand your condition from an evidence-based perspective. Reputable websites summarizing information supported by science include medical sites like everydayhealth.com, and health community sites like uspainfoundation.org and CreakyJoints.org. Browse those websites (and others) to learn more about pain management and healthy coping.
For example, at the CreakyJoints website you can read about all forms of arthritis, which link to studies or information provided by rheumatologists from organizations like the American College of Rheumatology.
Second, take note of your symptoms to identify activities that improve how you feel or “triggers” that seem to make pain worse. In addition to a free-form symptom journal, regular self-reporting of symptoms using standardized measures, like the RAPID3 (Routine Assessment of Patient Index Data), helps you record pain and function over time using data that health professionals understand and respect.
The value of patient-reported outcomes
Patient-reported outcome (PRO) measures like the RAPID3 are becoming increasingly important for assessing the quality and effectiveness of health care. In 2010, Congress created the Patient-Centered Outcomes Research Institute (PCORI) as part of the Affordable Care Act. PCORI’s mission is to “help patients and those who care for them make better-informed decisions about the health care choices they face every day, guided by those who will use that information.” PCORI helped support the establishment of patient-powered research networks across different disease categories so scientists can learn more about patients’ experiences of diseases and treatments using PRO measures.
Patients with arthritis and other rheumatologic conditions can now track their own symptoms and treatments while contributing to research by joining a patient-powered research network called ArthritisPower™. Created by CreakyJoints in partnership with the University of Alabama and support from PCORI, ArthritisPower is a free mobile and desktop app that uses the same standardized assessments used by many physicians.
For example, if a person with arthritis wants to track pain interference, they can use the Pain Interference instrument. It measures the self-reported consequences of pain, such as how it affects daily activities. Users can also access a Pain Behavior measure to track reactions to pain that are either verbal (crying, asking for help) or non-verbal (resting). Both pain measures were developed by the National Institutes of Health as part of the Patient-Reported Outcomes Measurement System (PROMIS). PROMIS and other data entered into ArthritisPower can be shared with your health care team and become part of the research database.
A third way to get more engaged in your care and feel a sense of control over illness is to become a health advocate in the community. Advocacy organizations like CreakyJoints or U.S. Pain Foundation regularly assemble patient councils that convene to provide direct feedback on projects and policy. ArthritisPower Patient Governors, for example, beta tested the mobile app and provided guidance about what features to include. Another patient-led group outlined and commented on the first-ever patient-targeted guidelines for rheumatoid arthritis that were published in early 2017.
In addition, many people living with arthritis across the country help affect legislation that will impact people with arthritis and other chronic diseases.
There’s no doubt that arthritis pain can affect quality of life. But by actively working toward understanding symptoms and shaping the treatment and care you receive, better pain management is achievable. For more information about ArthritisPower, visit ArthritisPower.org.
About Dr. Nowell
Benjamin Nowell PhD, LMSW, is Director, Patient-Centered Research at the Global Healthy Living Foundation (GHLF), CreakyJoints, and Co-Principal Investigator of ArthritisPower patient-powered research network. In his role at GHLF, he builds infrastructure to facilitate the meaningful and ongoing participation in research of people living with chronic conditions through partnerships with patient advocates and leading scientists. His research interests include examination of the factors that facilitate patient engagement as research partners, and patient-reported outcomes and shared decision making in rheumatologic conditions. Prior to joining GHLF, Ben worked as a medical social worker and community and long-term care coordinator for the Ottawa Regional Stroke Centre and as Research Coordinator for an evaluation of participant outcomes in Arthritis Foundation chronic disease self-management programs for arthritis. He holds a master’s degree from the University of California at Berkeley and a doctorate in social work from Columbia University.