Issue: April 2021
Disclosures: Nowell is an employee of Global Healthy Living Foundation, which receives research support from AbbVie, Amgen, Eli Lilly & Co., and PCORI. Eli Lilly & Co. sponsored the study reported here.
March 12, 2021
5 min read

Fatigue, pain top treatment priorities for patients with rheumatic disease

Issue: April 2021
Disclosures: Nowell is an employee of Global Healthy Living Foundation, which receives research support from AbbVie, Amgen, Eli Lilly & Co., and PCORI. Eli Lilly & Co. sponsored the study reported here.
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Patient voices are growing louder in rheumatology. The calls for shared decision-making and a dual target strategy of assessing disease remission are increasing with a body of evidence showing that when patient needs are met, outcomes improve.

A recent study by W. Benjamin Nowell, PhD, director of patient-centered research at Global Healthy Living Foundation, and principal investigator of ArthritisPower, and colleagues, added to that body of evidence. They aimed to learn what patient-reported outcomes (PROs) are most important to individuals with a cross-section of rheumatic and musculoskeletal diseases (RMDs).

Source: Adobe Stock.
“Patients are generally interested in being able to do the activities they enjoy doing, they want to go to work, to feel good, to have a good quality of life,” W. Benjamin Nowell, PhD, told Healio Rheumatology. “The more we can come up with concepts that reflect those values, the easier it will be for us to track the outcomes that are important to patients over time.”
Source: Adobe Stock

The study included 253 adult patients with ankylosing spondylitis, fibromyalgia syndrome, osteoarthritis, osteoporosis, psoriatic arthritis, rheumatoid arthritis and systemic lupus erythematosus from the ArthritisPower registry.

Eligible participants were invited to select between three and 10 PRO symptom measures they felt were most important to be tracked digitally through .

W. Benjamin Nowell

During the 3-month follow-up period, participants could continue tracking the measures they had initially selected or remove or add measures at months 1, 2 and 3. Participants were asked to prioritize as many as five measures at study conclusion.

Results showed that 140 patients confirmed or changed PRO selections over the duration of the study period.

Patient Reported Outcomes Measurement Information System (PROMIS) Fatigue was the most commonly selected single measure, according to the findings. PROMIS Physical Function, Pain intensity, and Pain interference, and duration of morning joint stiffness, as well as PROMIS Sleep Disturbance, were the other most important measures. The researchers noted that these preferences remained stable over the study duration.

Healio Rheumatology sat down with Nowell to discuss the outcomes of the study and how these findings may have an effect on both the clinical and research arenas.

Healio Rheumatology: What insights does this study provide about which symptoms are top priority to RMD patients?

Nowell: We undertook this study because the ArthritisPower Patient Registry is based on the premise that integration of outcomes and endpoints that are important to patients in both research and clinical practice will ultimately improve the use of evidence in decision-making. We wanted to quantify the PROs that are most important to the typical patient with RMDs.

What we found was that pain was clearly the most frequently selected outcome to track, specifically, PROMIS Pain Interference and Pain Intensity. PROMIS Fatigue was the single outcome measure that was selected most often. Physical function and morning joint stiffness were also important.

Healio Rheumatology: Beyond the top six selections, what other outcomes seemed to generate a lot of interest?

Nowell: Outcomes associated with mental health and emotional distress were also quite important to patients, including PROMIS Applied Cognition Abilities, which patients used as an assessment of brain fog.

Healio Rheumatology: What else struck you as interesting about these findings?

Nowell: One of the most interesting things that struck us was that these outcomes were seen across RMDs. However, looking at specific conditions, among patients with RA who were in the study from baseline to the end of the third follow-up month, we found that almost two-thirds initially selected the OMERACT RA flare measure. By the end of the third month, however, only 15% of RA patients in the study chose that measure.

Healio Rheumatology: Why did you find this interesting?

Nowell: Well, we did not ask why they chose to select or deselect measures. However, we might infer that patients prefer to track clear disease symptoms that they can understand easily. In general terms, it may be easier for most patients to wrap their head around the PROMIS measures, which tend to represent discrete symptoms across physical, mental and social health domains, whereas OMERACT flare, while a great tool, is a composite of symptoms and tends to overlap with some of the more readily understandable measures we included.

Healio Rheumatology: If patients have trouble wrapping their heads around some of these tools and measures, how do you rectify that? Are better tools necessary? Or more patient education?

Nowell: That is a good question, and anything I suggest would really just be speculation about why RA patients ultimately chose pain, fatigue or morning stiffness over the OMERACT measure, for example. But one thought is that all of these acronyms can be difficult to remember. More difficult to remember than pain or fatigue, of course.

Healio Rheumatology: Did your study attempt to account for some of these education gaps that may exist among patients?

Nowell: Within our study, patients were guided through a workflow that included predefined categories presented to them. We showed them measures of physical, mental and social health, and participants were able to click on a link to learn more about how each one was defined. We then explained that they could confirm which ones they wanted to track and add or subtract from that list over time.

Healio Rheumatology: Are there other ways to help them understand the different outcomes?

Nowell: From a patient-centered perspective, it would help to have patients use their own words to describe what symptoms or outcomes they find meaningful to track. For example, patients could pick outcomes out of a word cloud with links to explanations of outcomes in less clinical language, and then we would match specific instruments with the outcomes patients chose in their own words.

Our main takeaway on this point is that patients are generally interested in being able to do the activities they enjoy doing, they want to go to work, to feel good, to have a good quality of life. The more we can come up with concepts that reflect those values, the easier it will be for us to track the outcomes that are important to patients over time.

Healio Rheumatology: I want to come back to something you mentioned earlier, regarding pain interference versus pain intensity. Could you talk about some of these nuances in the outcomes your patients reported?

Nowell: Within the ArthritisPower Registry, we offer participants access to the PROMIS library, specifically the computerized adaptive testing (CAT) versions of the measures. One of our default measures is PROMIS Pain Interference.

For this particular study, we allowed participants to select either or both PROMIS Pain Interference and Pain Intensity. They were selected about equally often in our study. Pain Interference measures the impact of pain, specifically how pain gets in the way of being able to do those daily activities I mentioned before. In some ways, it can be a more concrete and useful measure to assess pain than even pain intensity. However, patients also have a difficult time ignoring pain when it is intense, so that is why many people also selected to track its intensity.

The fact that patients prioritize pain and fatigue is not a huge surprise and it reiterates the patient-centered work done by the OMERACT group. They also found that fatigue is very important, especially to RA patients, and they went a step further in noting that fatigue is a symptom that may not get adequate attention from providers. Understanding that fatigue is important to patients can motivate us to find ways to track this outcome and take steps to address it.

Healio Rheumatology: Could you talk about finding ways to track and intervene for PROs in both the clinical and research arenas?

Nowell: On the research side, we are excited about the fact that PROs are being included in more and more clinical trials for RA and other diseases. Patients can easily understand and pay attention to how various treatments and interventions can impact physical function. Within clinical practice, there are tools available that some patients may use to help their doctors understand how they are faring between visits.

Our ArthritisPower app can track symptoms over time, for example. This can help communication between individual doctors and patients. It can be difficult for a patient who has not seen their rheumatologist for 3 months to recall how they were feeling in that intervening period. But if they are tracking how they feel on their app each day or week, that information can be available to both the doctor and the patient at their next visit. This can help patients quantify and articulate how they are feeling, and it can help rheumatologists make necessary adjustments to treatments.

Healio Rheumatology: This sounds encouraging. Is there anything else like this that you would like to mention?

Nowell: In the past year, with COVID-19, a lot of patients stayed away from the doctor’s office. This elevated the use and importance of telehealth. Not just the actual telemedicine visits, but the need to use technology, like a smartphone app, to stay connected with patients. Our study also shows promise for the potential to conduct clinical trials virtually, using just a smartphone. There are huge, positive implications for both clinical practice and for research in knowing that patients can provide information back to their doctors in real time and over an extended period.

For more information:

W. Benjamin Nowell, PhD, can be reached at 515 N. Midland Ave., Upper Nyack, NY 10960; email: