Quality of life in patients with juvenile-onset systemic lupus erythematosus
Background. Childhood-onset systemic lupus erythematosus (cSLE) is a rare, multisystem, and potentially life-threatening autoimmune disease with significant comorbidities and the development of a chronic, debilitating condition for the patient. Modern parameters for assessing disease activity and de...
Saved in:
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
V. N. Karazin Kharkiv National University
2025-02-01
|
| Series: | Journal of V. N. Karazin Kharkiv National University: Series Medicine |
| Subjects: | |
| Online Access: | https://ukrmedsci.com/index.php/visnyk/article/view/141 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| Summary: | Background. Childhood-onset systemic lupus erythematosus (cSLE) is a rare, multisystem, and potentially life-threatening autoimmune disease with significant comorbidities and the development of a chronic, debilitating condition for the patient. Modern parameters for assessing disease activity and developing new treatment approaches, including the use of immunobiological drugs, take into account health-related quality of life (HRQoL) indicators as one of the fundamental principles of therapy for rheumatic diseases.
Purpose – To determine the HRQoL indicators in children with cSLE, considering disease activity, the frequency and nature of irreversible organ and system damages, and a disease duration of more than one year.
Materials and Methods. Over a 12-month interval, 70 children aged 7–18 years with cSLE, who had been diagnosed for more than one year, were examined. The mean disease duration at the time of the initial assessment was 32.97 ± 4.06 months (ranging from 12 to 120 months). A low disease activity level (1–5 points on the SELENA-SLEDAI index) was recorded in 61.11% of patients, a moderate level in 33.33%, and a high level in 5.56%.
The presence of potentially irreversible organ and system damages were assessed using the modified SLICC/ACR Damage Index for pediatric practice (PED/SDI), and HRQoL was evaluated using the LupusQoL questionnaire.
Statistical analysis was performed using application software packages (MS Excel, SPSS). Parametric and non-parametric tests, as well as correlation analysis, were used to determine the statistical significance of differences in the indicators.
Results. The mean Damage Index (DI) among adolescents with cSLE was 1.42 ± 0.17 points. A low DI (1 point) was observed in 19 children (35.85%), a moderate DI (2–4 points) in 8 patients (15.09%), while no cases of high DI (> 4 points) were recorded. The most common irreversible organ damage in children and adolescents with cSLE affected the nervous system (20.75%), lungs (13.21%), and vision (11.32%). After one year, signs of irreversible organ damage were registered in 52.83% of cSLE patients. The mean Damage Index increased to 1.48 ± 0.13 points, with vision impairment and growth retardation becoming the most frequent complications (18.87%).
According to LupusQoL results, children with cSLE demonstrated a significant decline in HRQoL, with an overall mean score across all domains of 65.51 ± 2.09 points. The most affected domains were «intimate relationships» and «body image», while the highest score was observed in the «pain» domain. A significant inverse correlation was confirmed between the overall HRQoL score and the degree of cSLE activity (r = -0.866; p < 0.05) in children without organ damage. Negative correlations were also found between disease activity and the domains of «pain», «planning», «intimate relationships», and «emotional health» (r = -0.530; p < 0.05, r = -0.529; p < 0.05, r = -0.720; p < 0.05, r = -0.728; p < 0.01, respectively).
Positive correlations were identified between the «pain» and «planning» domains and the age of patients at the time of assessment (r = 0.647; p < 0.01 and r = 0.642; p < 0.01, respectively). The «body image» domain scores correlated with the age at disease onset (r = 0.611; p < 0.01), while the «fatigue» domain was associated with disease duration (r = 0.638; p < 0.05). These findings confirm the substantial impact of disease activity on HRQoL deterioration across multiple domains.
Conclusions. Potentially irreversible organ damage was identified in 52.83% of children and adolescents with cSLE, with the disease exerting a negative impact on both the physical and psychological aspects of patientsʼ lives. A decline in HRQoL is associated with disease activity, primarily in individuals without organ damage, as confirmed by the inverse correlation between overall quality of life and cSLE activity level (r = -0.866; p < 0.05).
Significant differences in HRQoL indicators depending on the presence of irreversible organ damage were observed in the «fatigue» domain (patients with organ damage: 59.38 ± 6.60 points vs. those without organ damage: 80.56 ± 5.65 points; p < 0.05). |
|---|---|
| ISSN: | 2313-6693 2313-2396 |