Skip to main content

Patient Perspectives and Narratives

  • Chapter
  • First Online:
Telerheumatology

Abstract

An understanding of telerheumatology is incomplete without considering the perspective of people who are living with rheumatic conditions and their experience using telehealth for the management of their disease. Notably, all but one of the authors of this chapter are patients themselves, individuals diagnosed in childhood or adulthood and living daily with inflammatory arthritis. This chapter first defines what is meant by the term “patient perspective” as it concerns access to, expectations of, and use of telerheumatology. The advantages and disadvantages of telerheumatology from patients’ point of view are described, including previous research reporting collective patient satisfaction with telerheumatology. An overview of patient preparation needed for telerheumatology is also offered along with resources that rheumatologists may refer to when helping their patients plan for telemedicine visits. The chapter concludes with patient narratives of telerheumatology encounters during the COVID-19 pandemic.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

eBook
USD 16.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 129.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

References

  1. Zanini C, Sarzi-Puttini P, Atzeni F, Di Franco M, Rubinelli S. Doctors’ insights into the patient perspective: a qualitative study in the field of chronic pain. Biomed Res Int. 2014;2014:514230.

    Article  Google Scholar 

  2. Collective Patient Perspective National Cancer Institute Dictionary: National Cancer Institute at the National Institution of Health. Available from: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/collective-patient-perspective.

  3. Rowland P, McMillan S, McGillicuddy P, Richards J. What is “the patient perspective” in patient engagement programs? Implicit logics and parallels to feminist theories. Health (London). 2017;21(1):76–92.

    Article  Google Scholar 

  4. Arnold LM, Crofford LJ, Mease PJ, Burgess SM, Palmer SC, Abetz L, et al. Patient perspectives on the impact of fibromyalgia. Patient Educ Couns. 2008;73(1):114–20.

    Article  Google Scholar 

  5. Cockburn J, Pit S. Prescribing behaviour in clinical practice: patients’ expectations and doctors’ perceptions of patients’ expectations–a questionnaire study. BMJ. 1997;315(7107):520–3.

    Article  CAS  Google Scholar 

  6. Cheraghi-Sohi S, Hole AR, Mead N, McDonald R, Whalley D, Bower P, et al. What patients want from primary care consultations: a discrete choice experiment to identify patients’ priorities. Ann Fam Med. 2008;6(2):107–15.

    Article  Google Scholar 

  7. Valori R, Woloshynowych M, Bellenger N, Aluvihare V, Salmon P. The patient requests form: a way of measuring what patients want from their general practitioner. J Psychosom Res. 1996;40(1):87–94.

    Article  CAS  Google Scholar 

  8. Tähepold H, van den Brink-Muinen A, Maaroos HI. Patient expectations from consultation with family physician. Croat Med J. 2006;47(1):148–54.

    PubMed  PubMed Central  Google Scholar 

  9. Deledda G, Moretti F, Rimondini M, Zimmermann C. How patients want their doctor to communicate. A literature review on primary care patients’ perspective. Patient Educ Couns. 2013;90(3):297–306.

    Article  Google Scholar 

  10. Ramaswamy A, Yu M, Drangsholt S, Ng E, Culligan PJ, Schlegel PN, et al. Patient satisfaction with telemedicine during the COVID-19 pandemic: retrospective cohort study. J Med Internet Res. 2020;22(9):e20786.

    Article  Google Scholar 

  11. Almathami HKY, Win KT, Vlahu-Gjorgievska E. Barriers and facilitators that influence telemedicine-based, real-time, online consultation at patients’ homes: systematic literature review. J Med Internet Res. 2020;22(2):e16407.

    Article  Google Scholar 

  12. Halpern J. What is clinical empathy? J Gen Intern Med. 2003;18(8):670–4.

    Article  Google Scholar 

  13. Davidson E. Telehealth for chronic illness: the pros, cons, and why it needs to stay an option no matter what creakyjoints 2020. Available from: https://creakyjoints.org/doctor-patient/telehealth-visits-chronic-illness-pros-cons/.

  14. Miserandino C. The spoon theory 2003. Available from: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.

  15. Dudley J, Sung I. What patients like-and dislike-about telemedicine. Harvard Business Review [Internet]. 2020. Available from: https://hbr.org/2020/12/what-patients-like-and-dislike-about-telemedicine.

  16. Contreras CM, Metzger GA, Beane JD, Dedhia PH, Ejaz A, Pawlik TM. Telemedicine: patient-provider clinical engagement during the COVID-19 pandemic and beyond. J Gastrointest Surg. 2020;24(7):1692–7.

    Article  Google Scholar 

  17. George M, Danila MI, Watrous D, Reddy S, Alper J, Xie F, et al. Disruptions in rheumatology care and the rise of telehealth in response to the COVID19 pandemic in a community practice-based network. Arthritis Care Res (Hoboken). 2021;73(8):1153–61.

    Article  CAS  Google Scholar 

  18. Kruse CS, Krowski N, Rodriguez B, Tran L, Vela J, Brooks M. Telehealth and patient satisfaction: a systematic review and narrative analysis. BMJ Open. 2017;7(8):e016242.

    Article  Google Scholar 

  19. McDougall JA, Ferucci ED, Glover J, Fraenkel L. Telerheumatology: a systematic review. Arthritis Care Res (Hoboken). 2017;69(10):1546–57.

    Article  Google Scholar 

  20. Poulsen KA, Millen CM, Lakshman UI, Buttner PG, Roberts LJ. Satisfaction with rural rheumatology telemedicine service. Int J Rheum Dis. 2015;18(3):304–14.

    Article  Google Scholar 

  21. Raizada SR, Cleaton N, Bateman J, Mulherin DM, Barkham N. Are telephone consultations here to stay in rheumatology? Rheumatol Adv Pract. 2021;5(1):rkaa071.

    Article  Google Scholar 

  22. Wood PR, Caplan L. Outcomes, satisfaction, and costs of a rheumatology telemedicine program: a longitudinal evaluation. J Clin Rheumatol. 2019;25(1):41–4.

    Article  Google Scholar 

  23. Palcu P, Munce S, Jaglal SB, Allin S, Chishtie JA, Silverstein A, et al. Understanding patient experiences and challenges to osteoporosis care delivered virtually by telemedicine: a mixed methods study. Osteoporos Int. 2020;31(2):351–61.

    Article  CAS  Google Scholar 

  24. Kernder A, Morf H, Klemm P, Vossen D, Haase I, Mucke J, et al. Digital rheumatology in the era of COVID-19: results of a national patient and physician survey. RMD Open. 2021;7(1):e001548.

    Article  Google Scholar 

  25. Cavagna L, Zanframundo G, Codullo V, Pisu MG, Caporali R, Montecucco C. Telemedicine in rheumatology: a reliable approach beyond the pandemic. Rheumatology. 2021;60(1):366–70.

    Article  Google Scholar 

  26. Reed ME, Huang J, Graetz I, Lee C, Muelly E, Kennedy C, et al. Patient characteristics associated with choosing a telemedicine visit vs office visit with the same primary Care clinicians. JAMA Netw Open. 2020;3(6):e205873.

    Article  Google Scholar 

  27. George MD, Venkatachalam S, Banerjee S, Baker JF, Merkel PA, Gavigan K, et al. Concerns, healthcare use, and treatment interruptions in patients with common autoimmune rheumatic diseases during the COVID-19 pandemic. J Rheumatol. 2021;48(4):603.

    Article  Google Scholar 

  28. CMS.gov. Comprehensive care for joint replacement model Baltimore, MD: Centers for Medicare and Medicaid Services. Updated January 3, 2019. Available from: https://innovation.cms.gov/initiatives/cjr.

  29. Will my insurance cover telemedicine? ChironHealth: ChironHealth. Available from: https://chironhealth.com/definitive-guide-to-telemedicine/telemedicine-info-patients/will-insurance-cover-telemedicine/.

  30. 2021 ATA Halftime Report. American Telemedicine Association: American Telemedicine Association; 2021.

    Google Scholar 

  31. Kulcsar Z, Albert D, Ercolano E, Mecchella JN. Telerheumatology: a technology appropriate for virtually all. Semin Arthritis Rheum. 2016;46(3):380–5.

    Article  Google Scholar 

  32. Barton JL, Criswell LA, Kaiser R, Chen YH, Schillinger D. Systematic review and metaanalysis of patient self-report versus trained assessor joint counts in rheumatoid arthritis. J Rheumatol. 2009;36(12):2635–41.

    Article  Google Scholar 

  33. Scott IC, Scott DL. Joint counts in inflammatory arthritis. Clin Exp Rheumatol. 2014;32(5 Suppl 85):S-7-12.

    Google Scholar 

  34. Cheung PP, Gossec L, Mak A, March L. Reliability of joint count assessment in rheumatoid arthritis: a systematic literature review. Semin Arthritis Rheum. 2014;43(6):721–9.

    Article  Google Scholar 

  35. Cheung PP, Dougados M, Gossec L. Reliability of ultrasonography to detect synovitis in rheumatoid arthritis: a systematic literature review of 35 studies (1,415 patients). Arthritis Care Res (Hoboken). 2010;62(3):323–34.

    Article  Google Scholar 

  36. Levy G, Cheetham C, Cheatwood A, Burchette R. Validation of patient-reported joint counts in rheumatoid arthritis and the role of training. J Rheumatol. 2007;34(6):1261–5.

    PubMed  Google Scholar 

  37. Radner H, Grisar J, Smolen JS, Stamm T, Aletaha D. Value of self-performed joint counts in rheumatoid arthritis patients near remission. Arthritis Res Ther. 2012;14(2):R61.

    Article  Google Scholar 

  38. Smolen JS, Aletaha D, Bijlsma JWJ, Breedveld FC, Boumpas D, Burmester G, et al. Treating rheumatoid arthritis to target: recommendations of an international task force. Ann Rheum Dis. 2010;69(4):631.

    Article  Google Scholar 

  39. ArthritisPower arthritispower.creakyjoints.org: ArthritisPower, CreakyJoints. Available from: https://arthritispower.creakyjoints.org/.

  40. Nowell WB, Gavigan K, Kannowski CL, Cai Z, Hunter T, Venkatachalam S, et al. Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower. Arthritis Res Ther. 2021;23(1):53.

    Article  Google Scholar 

  41. Mistry J, Sharif M, Prideaux A, Smith C, Sumbwanyambe M, Sibley M, et al. Use of rheumatoid arthritis impact of disease (RAID) in routine care; identification of DAS28 remission and unmet patient-reported outcomes. Rheumatol Adv Pract. 2020;4(2):rkaa013.

    Article  Google Scholar 

  42. Calabrese L. Wellness research and education now center stage for patients with autoimmune diseases. Cleveland Clinic; 2018. Contract No.: June 26.

    Google Scholar 

  43. Hamine S, Gerth-Guyette E, Faulx D, Green BB, Ginsburg AS. Impact of mHealth chronic disease management on treatment adherence and patient outcomes: a systematic review. J Med Internet Res. 2015;17(2):e52.

    Article  Google Scholar 

  44. Borries TM, Dunbar A, Bhukhen A, Rismany J, Kilham J, Feinn R, et al. The impact of telemedicine on patient self-management processes and clinical outcomes for patients with types I or II diabetes mellitus in the United States: a scoping review. Diabetes Metab Syndr. 2019;13(2):1353–7.

    Article  Google Scholar 

  45. Care CoR. American College of Rheumatology Position Statement- Telemedicine. rheumatology.org: the American College of Rheumatology; 2020.

  46. Teleconsult Center at UPMC Bedford UPMC: UPMC; 2021. Available from: https://www.upmc.com/locations/hospitals/bedford/services/upmc-teleconsult-center.

  47. Barnard C. Telemedicine in rheumatology: COVID-19 and beyond 2020. Available from: https://rheumatology.medicinematters.com/covid-19/telehealth/telemedicine-in-rheumatology-covid-19-and-beyond/18528754.

  48. Quarterly Report, October 2020–December 2020 [press release]. GHLF: Global Healthy Living Foundation; 2020.

    Google Scholar 

  49. CreakyJoints Launches eRheum.org to Educate Patients on Getting the Most from their Telehealth Appointment [press release]. GHLF: Global Healthy Living Foundation; 2020.

  50. Appointment Tips eRheum: Global Healthy Living Foundation; 2021. Available from: https://erheum.org/appointment-tips/.

  51. Foundation GHL. Webinar: telehealth vs. in-person doctor visits: optimizing your rheumatology care. Webinars. CreakyJoints 2021. p. https://creakyjoints.org/education/webinar/webinar-telehealth-vs-in-person-doctor-visits-rheumatology/.

  52. Danila MI, Gavigan K, Rivera E, Nowell WB, George MD, Curtis JR, Christopher-Stein L, Banerjee S, Merkel PA, Young K, Shaw DG, Gordon J, Venkatachalam S. Patient perceptions and preferences regarding telemedicine for autoimmune rheumatic diseases care during the covid-19 pandemic. Arthritis Care Res (Hoboken). 2022;18:10.1002/acr.24860. https://doi.org/10.1002/acr.24860. Epub ahead of print. PMID: 35040274; PMCID: PMC9011874.

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to W. Benjamin Nowell .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2022 The Author(s), under exclusive license to Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Nowell, W.B., K. Wells, C., Rothblatt, Z., Venkatachalam, S. (2022). Patient Perspectives and Narratives. In: Peoples, C. (eds) Telerheumatology. Springer, Cham. https://doi.org/10.1007/978-3-031-00936-5_22

Download citation

  • DOI: https://doi.org/10.1007/978-3-031-00936-5_22

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-031-00935-8

  • Online ISBN: 978-3-031-00936-5

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics