Background Adolescents with chronic illnesses are faced with a significant burden of the disease due to the illness and its treatment. There are wide spread physical, psychosocial and economical effects of chronic illness on adolescent well-being. Although physical effects are well documented, subjective personal experiences are less known.
Objectives The objectives of this study were mainly: to describe the relationship between Quality of Life (QL) measures and psychiatric symptoms in adolescents with SLE and FMF, and to analyse the perception of the parents and adolescents concerning the disease and its relation to QL and HRQL (Health Related QL).
Methods This study included 51 adolescents, diagnosed with SLE (n=25), FMF (n=26) at Hacettepe University Faculty of Medicine (HUFM), Pediatric Rheumatology Department and 51 healthy adolescents. The HRQL of SLE patients was rated by parent and child using the SMILEY(Simple Measurement of Impact of Lupus Erythematosus in Youngsters). The adolescents with SLE and with FMF also completed CHAQ (Childhood Health Assessment Questionnaire). SLE activity was evaluated with SLEDAI (SLE Disease Activity Index) and PGA (Physician’s Global Assessment). FMF activity was assessed using PGA and CRP. Patients completed the BSI (Brief Symptom Inventory) measuring pscyhiatric symptoms, under the categories of anxiety, depression, negative self, somatization, and hostility.
Results 92,3% of the FMF patients, 56% with SLE, and 76,5% of the healthy adolescents reported their QL as good or very good. There was no significant difference between QL perceptions of parents among the three groups. The QL perceptions of the adolescents and their parents did not correlate [p=0,94(FMF), p=0,16(SLE)]. SLE patients had the highest rate of depression (54.2%) whereas hostility was detected among 54,9% of the healthy adolescents. A Significant relationship was detected between the BSI and SMILEY scores. There was a moderate correlation between the CHAQ and SMILEY scores. A mild correlation was detected between SLEDAI and PGA. CRP did not correlate with QL and the heath status perceptions of the adolescents.
Conclusions The QL perceptions of adolescents with FMF were better than the healthy adolescents; this may be interpreted due to the relief of anguish they suffer during their short-lived attacks. The QL perceptions of adolescents with SLE were the worst probably due to the chronic course and the burden of various medications resulting in an awareness of the limitations. On the other hand adolescents with SLE generally had similar psychopatologic symptom scores with FMF and healthy adolescents. This was attributed to a feeling of acceptance of the illness/disability as a natural part of life and developing resilience. We have shown differences in the perception of the adolescents versus their parents regarding their QL emphasizing the importance of adolescent specific interviews for chronic illnesses. We suggest that assessing the burden of disease in adolescents is complicated and a combination of tests and multidisciplinary follow-up with adolescent medicine may be required for appropriate management.
Disclosure of Interest None Declared