The Quality Of Life And Its Influencing Factors Among Adolescents With Systematic Lupus Erythematosus

Background:The Systematic Lupus Erythematosus(SLE) is one of the common childhood rheumatic diseases, which brings serious impact on children’s physical and mental health and quality of life, for its incurability, high risk of recurrence as well as the pain and discomfort caused by disease itself and treatment. The age peak incidence of childhood-onset SLE is adolescence, which is the key and particular period during the growth. Adolescents are sensitive and less enduring to irritation, frustration and failure, and are thus prone to mental and behavior abnormality problems. Therefore, children with SLE shall be more carefully concerned by the medical staff. With the improvement of treatment standard and prognosis, the quality of life of children with SLE has been attached with increasing importance. There have been some related researches overseas, yet none has been clone at home. Given the fact, it is necessary to use the Chinese version genetic and disease-specific scale of quality of life to adopt the generic and disease-specific scale of quality of life applicable to Chinese culture background to measure the quality of life of Chinese adolescents with SLE with an exploration of its influencing factors, especially intervenable ones, to provide a basis for future clinical intervention, in order to improve children’s quality of life.Objectives:1. To describe the current quality of life of adolescents with SLE.2. To explore the influencing factors that affect the quality of life of adolescents.Methods:Questionnaires were utilized in this study. Consecutively 150 adolescents with SLE and their parents were recruited from pediatric and rheumatism immunity departments of a Tertiary-level hospital in Beijing, between March 2014 and March 2015. Data on children and parents’demography information and children’s disease condition were collected. The Chinese version Pediatric Quality of Life Inventory Generic Core Module Version 4.0(PedsQLTM 4.0-GC) and Pediatric Quality of Life Inventory Rheumatology Module Version 3.0(PedsQLTM 3.0-TM) were applied to measure children’s quality of life, and children’s psychological status was measured by Screen for Child Anxiety Related Emotional Disorders(SCARED) and Depression Self-Rating Scale(DSRSC); Self-evaluating Anxiety scale(SAS) and Self-rating Depression Scale(SDS) were used to measure the parent’s psychological status; while Family Management Measure(FaMM) was employed to measure the family management condition. SPSS 19.0 was used for statistical analysis.Results:150 cases of adolescents with SLE were included in this study eventually.1. The mean summary score of Chinese version of PedsQLTM 4.0-GC was 72.43±14.02, the School function dimension scored 62.14±19.86, the Physical function dimension scored 68.23±20.64, the Emotional function scored 72.48±20.84 and the Social function scored 88.56±13.84; the School function dimension scored the lowest while the Social function dimension was the highest. The mean score of Chinese version of PedsQLTM 3.0-RM was 79.64±15.17, the Worry dimension scored 69.02±22.81, the Communication dimension scored 72.87±24.57, the Pain & Hurt dimension scored 78.33±21.21, the Treatment dimension scored 81.83±18.66 and the Daily activity dimension scored 93.88±15.00, the Worry dimension scored at the bottom while the Daily emerged at the top. The score of Daily activity, Social function, Treatment, and Emotional function dimensions were relatively high while the score of School function, Physical function, Pain & Hurt, Worry, and Communication dimensions were relatively low.2. The Multiple linear regression analyses for the summary score of PedsQLTM3.0-RM indicated that inpatient or outpatient treatment, parent’s management difficulties of the disease, the anxiety of parent, the anxiety of child, and the disease activity were the influencing factors that could explain the 51.4% variance of the summary score.Conclusion:The quality of life of subjects in this study is acceptable, but note satisfactory. The scores of School function, Physical function, Pain & Hurt, Worry and Communication dimensions were relatively low, which need more attention. Inpatient or outpatient, parent’s family life difficulty, the anxiety of parent, the anxiety of child, and disease activity were the main influencing factors that affect the quality of life of adolescents with SLE. The intervenable factors were the anxiety of parent and child, the family management condition.