Background The influence of psychosocial aspects on Juvenile Systemic Lupus Erythematosus (JSLE) is known both in the triggering of the disease and in reactivation. Since it is a chronic disease in pediatric patients, its diagnosis has an important impact on both the patient and the family. The understanding of the diagnosis, evolution and treatment of the disease leads to a better adherence to the treatment, consequently better evolution.Objective: To evaluate the impact of the diagnosis of JSLE in the life of patients and parents and the degree of understanding about the disease and treatment.
Methods Pilot study with application of a questionnaire containing epidemiological data, questions about the understanding of the disease, psychological impact on diagnosis and currently and association with a stressor event. This questionnaire was applied to the jSLE patients and their parents accompanied at pediatric rheumatology department of Santa Casa de São Paulo. Qualitative data were submitted to exploratory descriptive analysis.
Results 24 patients and 21 parents answered the questionnaire. 84% of the patients were female and 95% of the relatives were mothers. The age ranged from 9 to 17 and from 28 to 46 years for the patients and the parents, respectively. The follow-up time was 33.3±5.7 months. Only 21% of the patients and 38% of the parents were able to define SLE as an autoimmune disease. Regarding the cause of SLE, 29% of parents and 13% of children do not know but many parents associated with the emotional issue, while patients related to altered immune system. Both parents and patients associated a stressor event with the onset of jSLE. Regarding treatment both children and parents demonstrated an awareness of the need for appropriate medication and follow-up, but also described the importance of sun protection.
The main feeling reported at the time of diagnosis was sadness for both parents and patients. Already today, 50% of children and parents express a feeling of conformity and tranquility, knowing how to deal better with the disease, but still have some degree of concern.
Conclusions jSLE is a disease that brings a sense of sadness and there is an association of a stressor event for both patients and parents. The health team must be able to clarify the lupus disease, considering limitations of understanding of the patients and parents, which allows a better control of the disease, bringing tranquility.
Funding Source(s): None
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