Purpose A pandemic emergency could represent a source of concern for Systemic Lupus Erythematosus (SLE) patients and their rheumatologists; the unexpected arrival of the COVID-19 emergency could determine the loss of health status control, with anxiety and stress development. Here, we performed a descriptive and explanatory study to describe the expectations and potential concerns related to COVID-19 vaccination in SLE subjects, by using a narrative approach and thus providing the patients’ perspectives.

Methods SLE patients filled out an anonymous self-administered web-based questionnaire consisting of four questions regarding their experience with SLE over the past year and with vaccination, as reported below:

1. How have you experienced your condition as a Lupus patient in the last year?

2. How did you feel when you were called for the vaccination? What did it mean for you to be called for the vaccination?;

3. Describe the day of vaccination;

4. Do you think anything will change in your life now that you have been vaccinated? (If so, what)?).

Furthermore, the Positive and Negative Affect Schedule (PANAS) and the Generic Risk Perception (GRP) were performed in all the patients.

Results Thirty-one patients were recruited [M/F 29/2; mean age 45.2 years (SD 8.9)]. The experience during the last year was described with a predominantly negative connotation, referring to the fear of infection, feelings of fear or anxiety, concern for own frailty or for contracting the virus. Concerning the question on vaccination, people basically answered in two ways, referring either to the fear or concern related to the risk to their health and possible side effects, or to the feeling of relief, opportunity/freedom/health protection and gratitude for having received the vaccine.

The application of PANAS questionnaire referring to the period before and after vaccination demonstrated a significant improvement in the majority of investigated positive items and the reduction of those negative. In detail, we observed the significant improvement in the following positive items: determined (p=0.03), active (p=0.001), enthusiastic (p=0.0005), alert (p=0.01), and strong (p=0.02). Finally, a substantial change in the risk perception was observed: in particular the proportion of patients perceiving high risk of being infected with SARS-Cov2 decreased from 29.4% to 2.9%.

Conclusion The present descriptive and explanatory study provides information about the experience with vaccination against COVID-19 of SLE patients. Our results indicated that vaccination substantially changed the patients’ perspective, with a positive direction towards the future.