This article has been reviewed and updated as of April 28, 2021.
When you have an infection like a cold, you know when you have symptoms and when you feel better. With a condition like diabetes, you can track blood sugar and A1C levels to make sure the condition is well-managed.
But with chronic diseases like arthritis and related rheumatologic conditions, it is not always so clear-cut to know how you’re doing. Doctors can measure blood levels for underlying inflammation and do imaging of joints to look for swelling and damage, but this often doesn’t fully capture how patients feel on a daily basis or how their condition is impacting their ability to function and fully live their lives.
That’s why patient-reported outcomes (PROs) are so important. These are typically short surveys that assess various health symptoms, such as pain, fatigue, sleep, and more.
PROs are a patient’s own assessments of how arthritis affects daily tasks — including how you rank or define the difficulty of simple activities like getting in and out of your car or buttoning your shirt. They are a very important tool for measuring and monitoring disease.
PROs are also important during clinical trials for medications or other treatments, as they can assess how different therapies affect patients and the symptoms that matter to them.
A new study from Global Health Living Foundation (GHLF) and CreakyJoints sought out to determine which PROs matter most to arthritis patients. Initial findings from the study — which was conducted between December 2018 and April 2019 — were first reported in November 2019. The research was then presented during the European E-Congress of Rheumatology 2020 and was recently published in the journal Arthritis and Research Therapy in February 2021.
For the study, we recruited patients from our ArthitisPower research registry with various self-reported conditions — including rheumatoid arthritis (RA), psoriatic arthritis (PsA), ankylosing spondylitis (AS), systemic lupus erythematosus (SLE), osteoporosis (OP), osteoarthritis (OA), and fibromyalgia syndrome (FMS) — and asked them to select three to 10 different symptoms they wanted to track via short health assessment questionnaires. Study participants then went on to complete the assessments once a month for the next three months. The symptoms that patients could track included:
- Physical Function
- Mental Health (including depression, anxiety, and anger)
- Social Health
- Sexual Function
- Sleep Disturbance
- Duration of Morning Joint Stiffness
- RA Flare (for RA patients only)
After the three-month study period, we wanted to find out which symptoms patients found most important to track. How would they rank these various types of assessments relative to each other?
Here is what we learned.
Fatigue, Pain, and Related Symptoms Mattered Most
After three months, patients were asked to rank the symptoms they had chosen to track in order to indicate which they felt were most important, then researchers weighted the responses to come up with a total summary score for each measure. The top five symptoms that patients wanted to track were:
- Physical function
- Pain intensity
- Pain interference
- Joint stiffness duration
“Across many of the conditions included in this study, fatigue is a common and often debilitating and misunderstood symptom,” says study co-author Kelly Gavigan, MPH, manager of research and data science at GHLF. “Patients anecdotally report that fatigue is one of the worst parts of having a chronic inflammatory disease, and that their loved ones and even sometimes health care providers don’t fully understand the magnitude and impact it can have on their lives. It’s therefore not surprising that people considered this symptom as most important to track.”
Number of Symptoms Tracked Stayed Steady
When the study began, participants chose an average of seven symptoms each to track each month. Every 28 days, people could drop PROs, add new PROs, or keep the ones they were tracking. The average number of symptoms patients opted to track remained relatively steady throughout the study period: around seven measures.
It’s interesting that study participants chose roughly seven symptoms to track (with a minimum of three and a maximum of 10).
“Rheumatologic conditions are complex and multifaceted in nature,” says Louis Tharp, executive director of GHLF. “In order to get a full picture of how they’re doing, patients may need to track more than just a single domain, like only pain, or only fatigue, or only depression. Tracking many different kinds of PROs over time, via an app like ArthritisPower, can give you a better sense of how your disease is affecting your health, mood, and lifestyle.”
While most PROs selected were used consistently over time, one PRO — rheumatoid arthritis (RA flare) — had a noticeable drop-off. Although nearly 78 percent of those with rheumatoid arthritis selected this PRO to track at the start of the study, only about 15 percent were still tracking it after month three. More research is needed to understand why participants didn’t keep tracking this measure over time.
Mental Health Symptoms Matter Too
In the initial study, many patients said they wanted to track mental health-related symptoms, like depression, anxiety, applied cognition abilities (“brain fog”), and anger. In fact, 83 percent of participants selected at least one mental health symptoms to measure across all study time points. Sleep was another popular PRO that many patients wanted to track.
The percentage of patients who chose to track these mental health measures stayed fairly steady throughout the three-month study period. For example, 54 percent of patients were tracking depression at the study start and at months one, two, and three.
So why didn’t these mental health PROs crack the top five?
“Regardless of their rheumatologic condition, patients prioritized tracking aspects of pain and physical function,” says says W. Benjamin Nowell, PhD, director of Patient-Centered Research at GHLF. “People generally think of these diseases in terms of their physical manifestations. For many arthritis patients, tracking how the diseases affect them in a physical way — in terms of pain and fatigue and joint stiffness — is most important, though this data show that many people still want to track aspects of mental health.”
Found This Study Interesting? Get Involved
If you are diagnosed with arthritis or another musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.
This study was supported by Eli Lilly, which is a corporate sponsor of the Global Healthy Living Foundation.
Nowell WB, et al. Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower. Arthritis and Research Therapy. February 10, 2021. doi: https://doi.org/10.1186/s13075-021-02430-0.
Nowell WB, et al. Which Patient-Reported Outcomes Do Rheumatology Patients Find Important to Track Digitally? A Real-World Longitudinal Study in ArthritisPower. Annals of the Rheumatic Diseases. 2020. doi: http://doi.org/10.1136/annrheumdis-2020-eular.1016.