The results of this study highlight the long-term effects of early NPSLE-related events on organ damage and recurrences of NPSLE-related events over time, in those having NPSLE-related events around the time of lupus diagnosis.
Validation of a Self-Reported Questionnaire for Neuropsychiatric Lupus Events
SF-36 summary and subscale scores are reliable outcomes of neuropsychiatric events in systemic lupus erythematosus. Hanly JG, Urowitz MB, Jackson D, Bae SC, Gordon C, Wallace DJ, Clarke A, Bernatsky S, Vasudevan A, Isenberg D, Rahman A, Sanchez-Guerrero J, Romero-Diaz J, Merrill JT, Fortin PR, Gladman DD, Bruce IN, Steinsson K, Khamashta M, Alarcón GS, Fessler B, Petri M, Manzi S, Nived O, Sturfelt G, Ramsey-Goldman R, Dooley MA, Aranow C, Van Vollenhoven R, Ramos-Casals M, Zoma A, Kalunian K, and Farewell V; for the Systemic Lupus International Collaborating Clinics (SLICC). (2011). Annals of the Rheumatic Diseases 70: 961-967.
What is the topic?
The incidence of neuropsychiatric disease in people with lupus varies widely, from 21% to 95%, depending on the stringency of the criteria used. In 1999, the American College of Rheumatology defined 19 neuropsychiatric syndromes that can occur in people with lupus. In reality, only about 13% to 38% of these neuropsychiatric events are attributable to lupus. Regardless, it is recognized that the occurrence of neuropsychiatric disease is associated with reduced self-reported quality of life in people with lupus. The use of standardized measures of health-related quality of life associated with neuropsychiatric events has not yet been validated.
What did the researchers hope to learn?
The investigators sought to examine changes in health-related quality of life associated with clinical outcomes of neuropsychiatric events in people with lupus over the course of one year.
Who was studied?
The study included 274 people with newly diagnosed lupus having at least one neuropsychiatric event.
How was the study conducted?
The researchers collected information about lupus patients upon entry into the study and, in addition, about one year later. The following were documented for each patient: age, gender, ethnicity, education, medication use, lupus disease activity, and degree of organ damage. Health-related quality of life was also determined for each patient by use of the Short Form 36 (SF-36), which includes questions about both mental and physical status.
For each patient, new neuropsychiatric events since the previous study visit, as well as identification of their cause, were determined. Importantly, the results of the SF-36 self-reports were compared to physician-determined assessments of the patients’ neuropsychiatric statuses. Physicians making evaluations of the patients’ neuropsychiatric statuses were not aware of the patient self-reports.
What did the researchers find?
The patients included in the study were mostly Caucasian women with an average age of about 37. Upon enrollment into the study, patients had an average disease duration of about six months, and had moderate disease with minimal organ damage. Patients were taking typical lupus medications upon enrollment into the study.
A total of 912 neuropsychiatric events were recorded in the study. These events included 17 of the 19 neuropsychiatric events defined for people with lupus by the American College of Rheumatology.
The most frequent neuropsychiatric events included the following; headache (48%), mood disorders (20%), cognitive dysfunction (6.9%), anxiety disorder (6.4%), cerebrovascular disease (3.4%), multiple kinds of nerve inflammation (6.8% total), and seizures (2.9%). The remaining 11 neuropsychiatric syndromes defined by the American College of Rheumatology occurred in less than 6% of all patients.
After making statistical adjustments for gender, ethnicity, research center contributing the data, and previous SF-36 mental component score, there was a significant difference in the mental component SF-36 scores for the groups compared. Importantly, physician-determined changes in the neuropsychiatric statuses of patients were significantly similar to SF-36 self-reports provided by patients.
What were the limitations of the study?
This study has several limitations. First, some of the 19 neuropsychiatric events defined by the American College of Rheumatology were either underrepresented or absent in the lupus patients studied. Second, some patients experiencing severe or very active neuropsychiatric events may have been unable to complete the SF-36 self-report. Third, some psychosocial variables, such as fibromyalgia or low socioeconomic status, were not part of the dataset.
What do the results means for you?
The results indicate that changes in SF-36 scores, and particularly the mental component scores, are associated with clinical outcomes of neuropsychiatric events in people with lupus. The SF-36 thus appears to be a valid measure of changes in neuropsychiatric status in people with lupus that may complement other ancillary tests.
Neuropsychiatric lupus (NPSLE) is difficult to diagnose and can be present when disease activity in other organs cannot be identified. The researchers hoped to learn whether antibodies to ganglioside M1 could predict childhood NPSLE any better than standard laboratory measures currently in use.