Dr. W. Benjamin Nowell, Ph.D. Director of Patient-Centered Research CreakyJoints, study co-author Co-principal investigator of ArthritisPower

Which Patient-Reported Outcomes are Important to Rheumatology Patients?

MedicalResearch.com Interview with:

Dr. W. Benjamin Nowell, Ph.D. Director of Patient-Centered Research CreakyJoints, study co-author Co-principal investigator of ArthritisPower

Dr. Nowell

Benjamin Nowell, Ph.D.
Director of Patient-Centered Research
CreakyJoints, Principal Investigator of ArthritisPower 

MedicalResearch.com: What is the background for this study?

Response: Patient-reported outcomes (PROs) are important indicators of treatment effectiveness, but little is known about which PRO measures that patients find the most important to track for their disease management and to evaluate treatment effectiveness and health outcomes. In this study, we used the ArthritisPower Research Registry to evaluate which PROs patients with rheumatological conditions voluntarily selected to understand their experience of disease. 

MedicalResearch.com: What are the main findings?

Response: This is an ongoing study where we asked patients to select the patient-reported outcomes they wanted to track at baseline and at three subsequent time points (Month 1, m2, m3). We are reporting our baseline data here.The top three PRO measures chosen at baseline tracked fatigue (83%), pain (83%) and mental health (82%). Physical function (72%), social health (69%), sleep (65%), and duration of morning joint stiffness (57%) were also selected by participants in this ArthritisPower sub-study of 253 participants.

MedicalResearch.com: What should readers take away from your report?

Response: These findings will be useful to inform the design of future patient-centric clinical trials and real-world evidence generation because the symptoms patients consider important are not always the ones that are prioritized in clinical trials and real-world studies.

MedicalResearch.com: What recommendations do you have for future research as a result of this work? 

Response: Our study is ongoing and we hope to present future results that speak to whether patients continue to track these measures over time. We’re also looking at how they prioritize what to track and we’re asking participants for their feedback on what they would like to track, but weren’t able to in this study.

MedicalResearch.com: Is there anything else you would like to add?

Response: Regardless of clinician assessment and lab results that may demonstrate reduced disease activity, a patient will not consider a treatment effective unless they feel better and have a good, functional quality of life. Future studies need to evaluate the impact of rheumatology treatments against the symptoms that patients find most important, such as fatigue, pain and their mental health. Real-world studies will become increasingly important to our understanding of treatment effectiveness because they reflect the actual experience of patients with unique characteristics managing a disease over time while juggling a variety of symptoms and co-morbidities.

Disclosures: W. Benjamin Nowell, Ph.D., is Principal Investigator of ArthritisPower and was involved in the development of the ArthritisPower registry app; he is an employee of Global Healthy Living Foundation (GHLF). GHLF has received research funding support from AbbVie, Amgen, Bristol-Myers Squibb, Eli Lilly, Janssen, Pfizer, Sanofi Genzyme, and UCB. Development of ArthritisPower was partially supported through a Patient-Centered Outcomes Research Institute (PCORI) award (PPRN-1306-04811).

This ArthritisPower research was supported by Eli Lilly and Company and CreakyJoints, the digital patient community of GHLF, funding. 


Understanding Which Patient-Reported Outcomes Are Important to Rheumatology Patients: Findings from ArthritisPower

Benjamin Nowell1, Carol Gaich 2, Kelly Gavigan 1, Zhihong Cai 2, Anabela Cardoso 2, Theresa Hunter 3, Julie Birt 2, Jennifer Workman 2and Jeffrey Curtis 41Global Healthy Living Foundation, Upper Nyack, NY, 2Eli Lilly and Company, Indianapolis, IN, 3Eli Lilly and Company, Indianapolis, 4University of Alabama at Birmingham, Birmingham, AL

Meeting: 2019 ACR/ARP Annual Meeting



Last Modified: Nov 14, 2019 @ 1:21 pm




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