Avaliação da qualidade de vida dos pacientes com lúpus eritematoso sistêmico juvenil atendidos no ambulatório de reumatologia pediátrica do Centro Universitário do Estado do Pará

Abstract

Introduction. Juvenile Systemic Lupus Erythematosus (JSLE) is a chronic condition characterized by loss of immunoregulatory control during the disease activity. The most prevalent JSLE clinical manifestations are on females, in the pediatric age. The high incidence of disease damage are related to lower quality of life, besides to the physical, psychosocial and school negative repercussions secondary to the health situation. Objectives. To evaluate the impact of JSLE on the quality of life in patients under follow-up at the pediatric rheumatology outpatient clinic of CESUPA. Methods. The survey was in three phases. The first phase had an exploratory documentary analysis, to identify patients diagnosed with JSLE according to the SLICC criteria. In the second phase, a cross-seccional study was conducted, using PedsQLTM 4 questionnaire for patients and parents and guardians, to evaluate the health-related quality of life. The last phase, the SLEDAI-2K and SLICC/ACR-DI indices were used to score disease activity and cumulative damages. Results. A good quality of life, according to PedsQLTM 4, are present in most patients of this study. The was no direct relationship between the SLICC/ACR-DI score evaluate in the last outpatient clinic follow-up and the improvement of the quality of life. The same thing happened when comparing with the SLEDAI-2K score; in the latter, among the patients with low disease activity, there were 1/3 with low HRQoL, while 2/3 presented high HRQoL. In relating HRQoL to time diagnosis, was observed a better quality of life in patients who had a shorter time since diagnosis. In isolated evaluation of quality of life, the social and physical domains had higher score than emotional domain. For parents and guardians, among children, the social and school aspects had the higher averages and the emotional aspect lower avarages. On the other hand, among adolescents, the social e physical domains had higher avarages. Both children and adolescents had higher SLEDAI-2K on the first appointment. The children compared to adolescents, had higher SLEDAI-2K on the first appointment and lower on the last appointment. The most frequent clinical manifestations on the first appointment were arthritis, alopecia and seizure, in SLEDAI-2K; and the laboratory manifestations was a decrease in the complement system and anti-dna, besides proteinuria. The majority of patients had no score on cumulatives damages - there were only 38,8%. Clinical and laboratory manifestations were varied on SLICC criteria for diagnosis on the first appointment. Demographically, there was female prevalence and brown skin color among patients; the majority diagnosis was in childhood. Conclusion. For patients, JSLE has a greater emotional impact. For parents and guardians, on the other hand, the emotional impact is greater only on children; and school impact is greater on adolescents. The damages had no impact on HRQoL and the disease activity decreased during course of the illness.