Rheumatoid Arthritis

Patient-Reported Outcomes in RA

Introduction

Why should PROs be incorporated into clinical practice?

PROs reveal the patient’s perspective and provide unique information about symptoms and disease impact.^1,2Additionally, physician-derived measures rarely assess factors important to patients, such as sleep, fatigue, psychological well-being, and ability to work.¹

Patients with RA can experience barriers to in-person clinic visits due to mobility limitations that can affect driving and walking.³ Fewer in-person visits emphasise the importance of reliable PROs for rheumatology practice as they allow maintenance of tight control of inflammation, potentially limiting RA disease activity and damage and reducing risks associated with inadequately managed disease.^4,5

Furthermore, self-reported disease activity provides a more comprehensive assessment of patients with RA, going beyond measures of inflammation and structural damage that rely on the physician or laboratory and imaging tests.²

Insight

What makes a useful PRO?

PROs must gather meaningful information from the patient perspective that can be incorporated into clinical practice and inform treatment decisions.⁶

PRO measures for routine use

* Preference based on feasibility for routine use, favourable psychometric properties, and ability to categorise disease activity into at least 3 states⁷
† Preference based on feasibility for routine use and favourable psychometric properties⁸

Management

RA disease flare management with PROs

Access to frequent and reliable information on disease activity, symptoms, and flares is key to maintaining tight control of RA.^9,10 Fluctuations in disease activity that can often occur between scheduled clinic visits may be missed by reduced in-person consultation.¹¹

In telemedicine, PROs may help capture past and present flare data to inform the need for patient consultation.^2,5

PROs to assess RA disease flares:

OMERACT Flare Questionnaire^2,12

5 flare domains: pain, physical function, fatigue, stiffness, and participation in life activities and self-management
Rated over the past week

FLARE-RA Questionnaire^2,9

11 questions: 5 items related to joint symptoms and 6 items related to general symptoms
Associated with disease activity over a 3-month period

RAID Questionnaire¹³

7 domains of impact: pain, functional disability, fatigue, emotional well-being, physical well-being, sleep, and coping
Rated over the past week

For more information on RA disease flare management with PROs, consult learnjakstat.com

PROs

PROs in the digital era: ePROs

With telemedicine becoming more common, some traditional disease activity measures are not possible, which emphasises the usefulness of PROs. Digital technology is increasingly present in patients’ daily lives and can be utilised to assess disease activity through ePROs^5,9,14,15

Advantages of ePROs:

More complete and accurate data capture^10,11,16
More frequent disease assessment^10,11,16
Increased patient compliance, engagement¹⁶
Less administrative burden^11,16

PROs and the COVID-19 pandemic

The reliance on PROs for patient management has increased due to the circumstances of the COVID-19 pandemic.⁵

Addressing patient needs beyond physical function and disease activity with PROs

Disease domains important for patient care that may not be adequately addressed by current RA management include^1,2:

Fatigue
Pain
Morning stiffness
Sleep
Emotional well-being
HRQoL
Work participation
Ability to cope

Additional challenges include:

Accessing validated PRO tools¹
Availability of RA-specific tools¹³

Patient-Reported Outcomes in RA

Download the patient-reported outcomes infographic.

DOWNLOAD THE INFOGRAPHIC

ACR, American College of Rheumatology; CDAI, Clinical Disease Activity Index; COVID-19, coronavirus disease 2019; DAS28-ESR/CRP, Disease Activity Score in 28 Joints with Erythrocyte Sedimentation Rate or C-Reactive Protein; ePRO, electronic patient-reported outcome; FLARE-RA, Flare Assessment in Rheumatoid Arthritis; HAQ-II, Health Assessment Questionnaire II; HRQoL, health-related quality of life; MDHAQ, Multidimensional Health Assessment Questionnaire; OMERACT, Outcome Measures in Rheumatoid Arthritis Clinical Trials; PAS-II, Patient Activity Scale II; PRO, patient-reported outcome; PROMIS PF10a, Patient-Reported Outcome Measurement Information System Physical Function 10-Item short form; RA, rheumatoid arthritis; RAPID3, Routine Assessment of Patient Index Data 3; SDAI, Simplified Disease Activity Index.

REFERENCES

1. Gossec L, Dougados M, Dixon W. RMD Open. 2015;1(1):e000019. 2. Fautrel B, Alten R, Kirkham B, et al. Rheumatol Int. 2018;38(6):935-947. 3. InformedHealth.org [Internet]. Everyday life with rheumatoid arthritis. Cologne, Germany: Institute for Quality and Efficiency in Health Care (IQWiG); 2006-. Updated May 20, 2020. Accessed March 31, 2021. https://www.ncbi.nlm.nih.gov/books/NBK384458/ 4. Grigor C, Capell H, Stirling A, et al. Lancet. 2004;364(9430):263-269. 5. Taylor PC. Nat Rev Rheumatol. 2020;16(9):477-478. 6. Jagpal A, O’Beirne R, Morris MS, et al. BMC Rheumatol. 2019;3:36. 7. England BR, Tiong BK, Bergman MJ, et al. Arthritis Care Res (Hoboken). 2019;71(12):1540-1555. 8. Barber CEH, Zell J, Yazdany J, et al. Arthritis Care Res (Hoboken). 2019;71(12):1531-1539. 9. de Thurah A, Stengaard-Pedersen K, Axelsen M, et al. Arthritis Care Res (Hoboken). 2018;70(3):353-360. 10. Say P, Stein DM, Ancker JS, Hsieh C-K, Pollak JP, Estrin D. AMIA Annu Symp Proc. 2015;2015:1130-1139. 11. Nowell WB, Curtis JR, Nolot SK, et al. JMIR Res Protoc. 2019;8(9):e14665. 12. Bykerk VP, Bingham CO, Choy EH, et al. RMD Open. 2016;2(1):e000225. 13. Santos EJF, Duarte C, da Silva JAP, Ferreira RJO. Rheumatology (Oxford). 2019;58(Suppl 5):v3-v9. 14. Mobile fact sheet. Pew Research Center. June 12, 2019. Accessed March 12, 2021. http://www.pewresearch.org/internet/fact-sheet/mobile/ 15. Vogels EA. About one-in-five Americans use a smart watch or fitness tracker. Pew Research Center. January 9, 2020. Accessed March 12, 2021. http://www.pewresearch.org/fact-tank/2020/01/09/about-one-in-five-americans-use-a-smart-watch-or-fitness-tracker/ 16. Bingham CO 3rd, Gaich CL, Engstrom KD, et al. Trials. 2019;20(1):182.