Background/Purpose:

There is a need for educational interventions to boost chronic disease management skills among patients.  To address this need, we created a lupus patient education event comprised of a panel of multidisciplinary experts to provide information to lupus patients.  The study objectives were (1) to survey the local lupus population regarding their lupus-related questions and (2) to assess the impact of this event on patient knowledge about lupus.

Methods:

A planning team including representatives from the community, medical school, and rheumatology division oversaw the creation and execution of the event.  Patients with lupus (n=550) who had given permission to be contacted were invited to the event and those who registered were sent a pre- and post-event lupus knowledge survey via email.  Rheumatologists presented topics including a lupus overview, cardiovascular health, reproductive health and contraception for teens and adults, clinical research trials, and answered questions submitted from the audience.  A motivational speaker discussed ways to overcome challenges in managing a chronic disease, and a nurse educator presented material on speaking to your doctor about lupus. 

Results:

91 individuals attended the Lupus Patient Education Event in October 2011.  The pre- and post-event surveys were sent via email to all attendees, of which 39 individuals responded to the pre-test and 22 individuals responded to the post-test.  The mean age of responders was 39 +/- 14 years.  81% of total responders were lupus patients.  Respondents had limited awareness about belimumab as an FDA-approved medication for lupus (59% pre, 86% post), meaning of a positive ANA (64% pre, 73% post), malar rash as a symptom of lupus (67% pre, 91% post), and age groups most at risk (74% pre, 86% post). 

The knowledge questionnaire demonstrated an increase in patients’ knowledge about lupus after attending the event, especially regarding risk factors and knowledge about the disease state. Overall patients had less awareness about the meaning of a positive ANA, biologic medications (e.g. belimumab) and some of the characteristics of lupus including symptoms and risk factors prior to the event, with scores improving after attending the event (Table 1). 

Of 48 individuals who responded to the post-event evaluation, 91.3% said they felt we achieved the goal of providing information and education about lupus which will impact disease management and overall health. 

Conclusion:

The improvements in scores suggests efficacy of the patient education event in increasing awareness and knowledge about lupus in those who attended. The interactive nature of a symposium enables quality information to be disseminated to patients and families, and for patient questions to be answered.  Future events will emphasize topics suggested by participants and provide more interactive sessions.

Table 1.  Pre-test and post-test results from participants.

Theme	Question	Pre-Test (% Correct)	Post-Test (% Correct)	p value
Etiology	how lupus damages body	100	100	NS
Etiology	what is the cause of lupus?	100	95	NS
Knowledge/Acuity	what SLE stands for	100	100	NS
Knowledge/Acuity	meaning of a positive ANA	64	73	0.472
Knowledge/Acuity	medications safe in pregnancy	89	86	NS
Knowledge/Acuity	FDA-approved medication	59	86	0.036
Knowledge/Acuity	malar rash	67	91	0.036
Knowledge/Acuity	protein in urine	97	100	NS
Risk Factors	age group most at risk	74	86	0.275
Risk Factors	risk in men vs. women	90	86	0.6375
Risk Factors	African Americans and SLE	90	100	0.125
Comorbidities	comorbidities (CVD, Vit D)	92	95	NS

*NS = non-significant

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/impact-of-a-lupus-patient-education-event-on-knowledge-about-systemic-lupus-erythematosus/