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Monitoring systemic lupus erythematosus in standard clinical care

https://doi.org/10.1016/j.berh.2007.01.003Get rights and content

Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease with a fluctuating and unpredictable course. Monitoring SLE in the routine clinic setting is a challenge because both the disease and its treatment can result in organ damage. Disease activity indices and a cumulative history summary can be used to track complicated patients over time. Monitoring guidelines for damage from the disease and for the toxicity of treatment are available.

Introduction

Systemic lupus erythematosus (SLE) is always challenging for the clinician. Not only can it affect almost any organ system but it is often difficult to determine whether organ dysfunction is due to disease activity, organ damage, or both. Both SLE and its treatment can permanently damage organs. The quality of life in SLE is poor, leading to social and disability issues. This chapter addresses each domain of SLE: disease activity, organ damage, and quality of life, in terms of their monitoring in standard clinical care. The use of disease activity indices in the clinic and of a cumulative history summary to track complicated patients over time is discussed and summaries of monitoring guidelines for damage from the disease and for the toxicity of its treatments included.

Section snippets

Disease activity

SLE activity has three general patterns: ‘flare’ (or ‘relapsing remitting’), ‘chronic’ activity, or ‘long quiescence’ (or ‘remission’).

In the flare pattern, patients are usually well inbetween exacerbations.1 The exacerbations occur suddenly and unpredictably, sometimes overnight. Precipitants of flare are often not identified but can include ultraviolet light, the use of drugs or nutriceuticals that ‘activate’ the immune system (e.g. echinacea), infections, surgery, pregnancy, and sulfonamide

Monitoring disease activity

A stable SLE patient can be seen at quarterly intervals. An unstable SLE patient might require weekly follow-up. At each visit, an interval history is necessary. Because SLE can change over time, it is very helpful to have a summary sheet of past organ manifestations. An example of the Hopkins Lupus Cohort cumulative history form is shown in Figure 1. In a complicated patient, such a historical summary can avoid the need for large paper charts and for reviewing multiple notes in an electronic

Disease activity indices

To be used in standard clinical care, a disease activity index (DAI) must be short and easy to complete. Several such indices have been developed for use in the routine clinic setting. One, the Lupus Activity Index, is a visual analog scale for the physician's estimate of activity overall and for individual organs.11 A second practical DAI is the SLEDAI and its updated versions – the SELENA-SLEDAI12 and the SLEDAI-2K.13 Both types of DAI make it possible to summarize on one page the disease

Conclusion

Although few guidelines have been developed or tested for SLE, there is a general consensus on how to monitor SLE, how to monitor and prevent organ damage; and on the role of fatigue and fibromyalgia in the poor quality of life of the average patient with SLE.

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