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Lupus Guide

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Publication Date: May 2001
Revised September 2006

Lupus: A Patient Care Guide for Nurses and Other Health Professionals
3rd Edition

Introduction

Lupus erythematosus is a unique, complex disease with a wide scope of symptoms. It is also an elusive condition in that it affects individuals differently and often does not follow a predictable course. For example, a patient who appears to be in remission during a routine office visit can present at an emergency room the following week with severe pericarditis or sudden stroke.

A person diagnosed with lupus may have symptoms and disease activity that are easily managed with treatment, but it is not uncommon for health care professionals to encounter a lupus patient with numerous severe symptoms that are difficult to control. No two lupus cases are alike. As a result, care of the patient with lupus erythematosus is a challenge that draws on all the resources, knowledge, and strengths the health care team has to offer. Each member of the health care team—physician, nurse, therapist, dietitian, social worker, among others—has an important role to play in treating specific aspects of the disease and in supporting the patient to cope with his or her condition.

Lupus: A Patient Care Guide for Nurses and Other Health Professionals provides an overview of lupus erythematosus and the elements involved in caring for patients with this disease. It focuses on systemic lupus erythematosus (SLE). The Lupus Guide is intended primarily for nurses and other health professionals who work on an ongoing basis with lupus patients. The guide also presents the tools these professionals need to provide the best care possible for this important group of patients. Many of these patients will be cared for in an outpatient setting, but the Lupus Guide also addresses the needs of hospitalized patients.

Each chapter of the Lupus Guide deals with a specific aspect of the disease. Chapter 1, Lupus Erythematosus, provides a general overview of the disease, including brief discussions of the diagnosis, treatment, medications, and psychosocial aspects.

The chapter closes with a discussion of how these issues affect the way nurses and other health professionals provide care to lupus patients.

Chapter 2, Advances in Lupus Research, summarizes the current understanding of the etiology of lupus and describes areas of ongoing research. Recent research advances have significantly increased the understanding of lupus, and, as current research efforts unfold, there is hope for new treatments, improvements in patients’ quality of life, and perhaps prevention of or cure for the disease.

Chapter 3, Laboratory Tests Used to Diagnose and Evaluate SLE, summarizes the main laboratory tests used to diagnose lupus and to monitor a patient’s condition. These assessments include blood tests, measurements of autoimmunity, and tests for kidney disease.

Chapter 4, Care of the Lupus Patient, gives a system-by-system overview of the most common lupus manifestations and suggests nursing interventions. Several other key issues are also discussed, including general manifestations, pregnancy, infection, and nutrition. Not every patient will experience all of the problems and symptoms described. However, it is important for health professionals to be familiar with the range of possible manifestations so that they can accurately assess their patients and develop sound treatment and care plans.

Chapter 5, Medications Used to Treat Lupus, covers the major categories of drugs currently used to control lupus symptoms: nonsteroidal antiinflammatory drugs, antimalarials, corticosteroids, immunosuppressives, and intravenous immunoglobulins. These medications can often be used successfully to treat lupus symptoms, but their potential side effects can present other problems. Chapter 5 discusses each category of medication, describes its mechanism of action and use in treating lupus, and reviews the potential side effects associated with it.

Chapter 6, Psychosocial Aspects of Lupus, provides information on this critically important aspect of the disease. Because of the chronic, unpredictable, and evolving nature of lupus, patients often have to cope with serious emotional and psychosocial issues along with the physical dimensions of their illness. A good understanding of these issues will help nurses and other health professionals provide the empathetic and supportive care lupus patients need.

Chapter 7, Patient Information, contains 20 short fact sheets covering a broad range of issues related to lupus. Nine of the fact sheets deal with lupus medications. These Patient Information Sheets are designed to help patients understand their disease and its symptoms and complications and to develop effective ways of living with and controlling lupus. Nurses and other health professionals will find the sheets helpful in their ongoing teaching efforts.

The Lupus Guide closes with a chapter of resources for further information on lupus, and an updated bibliography of the source materials used to develop the book.

Today, the prognosis for people with lupus is far brighter than it was 25 years ago. Advances in research, improved treatments, a growing list of support networks and information resources, and an increased emphasis on close cooperation between the patient and the health care team mean that, for many patients, it is possible to have lupus yet remain active and involved with life, family, and work. The Lupus Guide is intended to provide nurses and other health professionals with a solid grounding in this important disease so that they can provide the care to make an active and involved life a reality for women and men with lupus.

Other National Institutes of Health Sponsors

National Center for Minority Health and Health Disparities
National Institute of Nursing Research
Office of Research on Women's Health