Part I: the patient at centre stage

23 The nurse’s perspective

Abstract

Lupus (Latin term for wolf) was used, since the Middle Ages to describe several types of diseases characterized by ulcerous lesions, mainly in the lower limbs. The true turning point in its history occurred at the beginning of the 19th century, with the distinction between lupus vulgaris and cutaneous lupus in its modern sense.1

Today, systemic lupus erythematosus (SLE/lupus) is described as a chronic systemic autoimmune disease of variable severity and course, distinguished by a tendency for flare. It is clinically and serologically, a diverse autoimmune disease that can affect any organ or system of the body and display a wide spectrum of manifestations.2

Evidently, due to the chronic relapsing-remitting nature of SLE,3 a holistic approach, involving a multi-disciplinary team (Physician, Rheumatology/Lupus Nurse Specialist, Physiotherapist etc) is essential to providing high quality care to lupus patients.

The pathway to becoming a Rheumatology/Lupus Nurse Specialist, requires a Registered Nurse undergoing additional specialised education and training, that allows them to provide autonomous advanced care and tasks to meet the patient’s clinical needs (i.e., facilitating screening, initiating, monitoring and reviewing treatment and providing specialty education and timely accessible health advice to patients) in order to ensure effective disease management.4

As early the 1980s, Rheumatology nursing (roles include Rheumatology Clinical Nurse Specialist, Rheumatology Nurse Practitioner), was recognised as a distinct nursing speciality in the UK and USA.5

The Rheumatology Nurse has since remained a significant member of the multi-disciplinary team, in the management of patients with systemic lupus erythematosus.

References

  1. Felten R, Lipsker D, Sibilia J, et al. The history of lupus throughout the ages. J Am Acad Dermatol 2022;87:1361–9. doi:10.1016/j.jaad.2020.04.150.

  2. Hinojosa-Azaola A, Sanchez-Guerrero J : Overview and Clinical Presentation : Dubois’ Lupus Erythematosus and Related Syndromes (Ninth Edition) 2019, Ch 32, Pages 389–394 (Available online 7 November 2018, Version of Record 7 November 2018).

  3. Zen M, Iaccarino L, Gatto M, et al. Prolonged remission in Caucasian patients with SLE: prevalence and outcomes. Ann Rheum Dis 2015;74:2117–22. doi:10.1136/annrheumdis-2015-207347.

  4. Mounce, K., Ryan, S (2001). The historical development of extended clinical roles in rheumatology. In: Carr, A. (Ed.), Defining the Extended Clinical Role for Allied Health Professionals in rheumatology. Arthritis Research Campaign, Chesterfield, pp. 9–10.

  5. American Nurses Association, 1983. Outcome Standards for Rheumatology Nursing Practice. American Nurses Association Publications.

Learning Objectives

  • Explain the role of the Rheumatology Nurse

  • Describe the pathway to becoming a Rheumatology Nurse

  • Describe the benefits of a Rheumatology Nurse to the rheumatology/lupus patient

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