Extent of Knowledge on the Disease and Learning Needs of Patients with Systemic Lupus Erythematosus

Song, Byung Eun; You, So Yeon

Abstract

This study was conducted between October 1, 1998, and December 31, 1998, in order to provide basic data to develop better self-management educational programs for systemic lupus erythematosus (lupus) patients. In the study, the extent of each patients knowledge on the disease and their learning needs about it were examined for 100 lupus inpatients and outpatients at the Kangnam St. Marys Hospital. Data were collected by using questionnaires to those patients. Frequencies, percentage, average, standard deviation, t-test, ANOVA, and Duncans multiple range test were examined through the SAS program. The result of study follows: 1) The average score of patients knowledge on the disease was 15.7 (range, 7-20; standard deviation, 2.74). Subjects scored higher as far as the extent of their knowledge in the following categories : management of daily life, diet, characteristics of the disease, risk factors, and medication. Two categories shared the highest percentage of correct answers: 99% of subjects correctly identified that fatigue and stress aggravate symptoms of lupus and symptoms of lupus vary among individuals in range and type. However, when subjects were asked if patients should get a regular examination by an ophthalmologist every 4-6 months while they are on medication to treat rashes, lupus can be completely cured, and contraceptives that include a female hormone (estrogen) are good as contraceptive methods, the percentages of correct answers were low (32%, 31%, and 20%, respectively). In terms of subjects knowledge about the disease by their general characteristics, single subjects had more knowledge about the disease than married subjects did (t=2.14, p=0.0353). The extent of knowledge also varied by monthly income (F=4.96, p=0.0097). Those with more formal education had more knowledge about lupus than those who had less formation education did (t=2.95, 0.0039). Additionally, those who were satisfied with their education about the disease had better knowledge about it than those who were dissatisfied with their education did (t=2.71, p=0.0090). 2) The extent to which lupus patients wanted to be educated about the disease was, on average, 64.5 (range, 46-75; standard deviation, 7.91). Areas for which patients requested education are listed here in order : risk factors, sexual lives and patients associations. Patients who had been hospitalized demonstrated wanting more education than those who had not been did (t=3.73, p=0.0003). The extent to which they wanted the information was different by the number of educational sessions they had (F=3.98, p=0.0249). In conclusion, the results above would be considered when the education programme is planned for SLE patients.