W. Benjamin Nowell
ATLANTA — A vast majority of patients with a cross-section of rheumatic diseases reported that pain, fatigue and mental health issues were those they would like researchers to track, according to a speaker at ACR/ARP 2019.
“In this longitudinal study, we wanted to understand what symptoms of rheumatic diseases were most salient for patients,” W. Benjamin Nowell, PhD, director of Patient-Centered Research at CreakyJoints, told Healio Rheumatology. “From here, we hope to operationalize research and treatment programs to match the level of importance they placed on these symptoms.”
Nowell and colleagues used data from the ArthritisPower registry to survey patients with self-reported rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, systemic lupus erythematosus, osteoporosis, osteoarthritis or fibromyalgia syndrome.
Patients were invited to use a smartphone and web-based app to track up to 10 patient-reported outcome measures that they felt were important for their condition. The measures included parameters related to pain, physical and cognitive function, mental health, fatigue, social function, work impact, sexual function and sleep.
Most patients with rheumatic diseases reported that pain, fatigue and mental health issues were those they would like researchers to track, according to Nowell.
Patients then had the option to continue tracking measures at 1, 2 and 3 months after the initial assessment. At these time points, they could change the measures they wanted to track. An exit survey at 3 months also allowed patients to write in measures that had not been included on previous assessments. “We were interested in seeing what was sticking with these patients over time,” Nowell said.
Nowell discussed findings for 253 patients. Results showed that both pain and fatigue were tracked by 83% of the cohort, while 82% chose to track mental health issues.
“There were three different pain measures included,” Nowell said, noting that pain intensity, interference and behavior were the selections from which patients could choose.
“Mental health issues included depression, anxiety, applied cognition ability — which patients would commonly call ‘brain fog’ — and anger,” Nowell said. “The most common measure we saw had to do with depression.”
Physical function, social health, sleep and morning stiffness were each tracked by more than 50% of patients.
For Nowell and his colleagues, the take-home message is that pain, fatigue, and mental health are not the measures that are typically highlighted in conventional clinical trials, or even in the clinical setting. “Clinicians tend to focus on treatment effectiveness and disease activity,” he said. “The measures we saw from our patients often do not get much attention. It is helpful and important for us to know that patients think pain, fatigue, and mental health issues are significant to their overall, global well-being.” – by Rob Volansky
Nowell WB. Abstract #435. Understanding which patient-reported outcomes are important to rheumatology patients: Findings from ArthritisPower. Presented at: American College of Rheumatology/Association of Rheumatology Professionals Annual Meeting; Nov. 9-13, 2019; Atlanta.
Disclosure: Nowell reports associations with AbbVie, Allergan, Biogen, BMS, CVS, Eli Lilly, the Global Healthy Living Foundation, GSK, Merck, Pfizer, and Stryker.