As we all look forward to next week’s virtual ACR Convergence 2020, it is a good time to reflect on the key topics in the field of rheumatology, especially in the era of virtual patient care necessitated by COVID-19.
One topic that has continued to be important over the past 9 months is patient-reported outcomes (PROs). Due to the increase in telemedicine for routine visits in this “new normal” of the COVID-19 pandemic, some physicians are considering using PROs to identify which patients could be best suited for telehealth visits and to identify patients’ unmet needs using short, easy-to-complete surveys.1 This role for PROs suggests that telehealth will continue to grow in acceptance and popularity, and as a result, we expect to see several presentations on these topics at this year’s ACR Convergence 2020 and beyond.
In a recent study of 251 patients with rheumatic diseases, patients self-reported the outcomes they felt were most important.2 Overall, patients ranked fatigue, pain, and mental health, including depression, as the top 3 unmet needs.2
Forty-two to eighty percent of patients living with RA experience fatigue, which they describe as overwhelming, unpredictable, difficult to handle, and unimproved by sleep.3,4 If not managed appropriately, fatigue can lead to mental health symptoms, problems functioning both physically and socially, and worsening general perception of health.3 Oftentimes, those with fatigue find that these symptoms pose a persistent threat to their employment.4
While patients notice these symptoms, most do not discuss their fatigue with their rheumatologists because they are afraid it will be dismissed or they find it difficult to describe.3 Many have simply accepted fatigue as part of their disease.3 However, several tools have been developed to track fatigue, such as FACIT-F and PROMIS.5-7 Additionally, patient lifestyle changes have also been shown to improve fatigue.8-9
Sixty-six to eighty-eight percent of patients living with RA list managing pain as their top priority.10 However, many patients, including those classified as being in remission, are dissatisfied with their current levels of pain.11,12 Ongoing pain is a top concern as it may indicate improper disease control, which may lead to patients seeking additional medications for pain relief.12,13 This was highlighted in a recent study from the Corrona registry, which showed persistent opioid use has significantly increased among patients with RA.12,13 Improving pain levels has been associated with greater daily activity and higher levels of work productivity, and also could be a sign of better-controlled RA.14 Regular conversations between you and your patients about any pain they feel, and any potential influencing factors, is a simple but important pain-management approach highlighted in the 2010 ACR report from the Pain Management Task Force.15
Research shows that the rate of depression for patients living with RA is 2 to 4 times higher than that in the general population.16 This disparity is even larger when we look at women with RA, who experience rates of depression 1.6 times higher than men with RA.17 Depression in patients living with RA has been shown to not only decrease RA health outcomes but also to increase healthcare utilisation, healthcare costs, and mortality.16 Despite the prevalence of depression in patients with RA, only 1% of patients are screened for depression.18 There are tools, such as the Patient Health Questionnaire (PHQ9), that you can use to screen your patients for depression, but talking with your patients about their risk for depression it is also recommended.19 The perceived stigma of mental health issues may decrease the visibility of depression, and data indicate that it often goes undiagnosed and untreated in patients with RA.19
Over the past decade, we have seen significant advances in the treatment of RA and management of disease activity and joint damage.20 However, these changes have not always been in line with improvements in patient quality of life.21,22 In fact, improvements in various PROs, such as pain, fatigue, and morning stiffness, have lagged behind the improvements in disease outcome measures, such as swollen and tender joint counts.22 We look forward to seeing the updates coming out of this year’s ACR Convergence and how the role of PROs is changing due to the increased use of telemedicine.
See Dr. Roberto Caporali’s perspective on the applications of PROs in a virtual setting.
ACR, American College of Rheumatology; FACIT-F, Functional Assessment of Chronic Illness Therapy – Fatigue; PROMIS, Patient Reported Outcomes Measurement Information System; RA, rheumatoid arthritis.
References: 1. Taylor PC. Nat Rev Rheumatol. 2020:16(9):477-478. 2. Nowell B, et al. ACR/ARP2019 [abstract 435]. 3. Repping-Wuts H, van Riel P, van Achterberg T. Rheumatology. 2009;48(3):207-209. 4. Santos EJF, Duarte C, da Silva JAP, Ferreira RJO. Rheumatology (Oxford). 2019;58(Suppl 5):v3-v9. 5. Stebbings S, Treharne GJ. Int J Clin Rheumatol. 2010;5(4):487-502. 6. Pope JE. RMD Open. 2020;6(1):e001084. 7. Sandıkçı S, Özbalkan Z. Eur J Rheumatol. 2015;2(3):109-113. 8. Cella D, Yount S, Sorensen M, Chartash E, Sengupta N, Grober J. J Rheumatol. 2005;32(5):811-819. 9. Bingham CO 3rd, Gutierrez AK, Butanis A, et al. J Patient Rep Outcomes. 2019 Dec;3:14. 10. Lee YC. Curr Rheumatol Rep. 2013;15(1):300. 11. Taylor P, et al. J Int Med Res. 2010;38(4):1213-1224. 12. Lee YC, et al. Arthritis Rheumatol. 2019;71(5):670-677. 13. Lee YC, Cui J, Lu B, et al. Arthritis Res & Ther. 2011;13(3):R83. 14. Michaud K, Pope JE, Emery P, et al. Rheumatol Ther. 2019;6(3):409-419. 15. American College of Rheumatology Pain Management Task Force. Arthritis Care Res. 2010;62(5):590-599. 16. Margaretten M, Julian L, Katz P, Yelin E. Int J Clin Rheumatol. 2011;6(6):617-623. 17. Jacob L, Tockel T, Kostev K. Rheumatol Ther. 2017;4(1):195-200. 18. Healio Rheumatology. August 29, 2018. Accessed September 18, 2018. https://www.healio.com/news/rheumatology/20180828/only-1-of-patients-with-ra-screened-for-depression-despite-increased-adverse-event-risk 19. Withers MH, Gonzalez LT, Karpouzas GA. Rheumatol Ther. 2017;4(2):281-291. 20. Fautrel B, Alten R, Kirkham B,. Rheumatol Int. 2018;38(6):935-947. 21. Matcham F, Scott IC, Rayner L, et al. Semin Arthritis Rheum. 2014;44(2):123-130. 22. Nieuwenhuis WP, de Wit MP, Boonen A, van der Helm-van Mil AH. Ann Rheum Dis. 2016;75(11):2054-2056