Investigation of the effects of disease process and parent-child disease perception on quality of life in childhood chronic rheumatic diseases

Introduction

Chronic rheumatic diseases in childhood can affect the quality of life of both children and their parents due to long-term inflammation, recurrent flare-ups and immunosuppressive treatments. Differences in the course of autoinflammatory diseases (such as Familial Mediterranean Fever [FMF]; Periodic Fever, Aphthous Stomatitis, Pharyngitis and Adenitis [PFAPA]) and autoimmune diseases (such as Juvenile Idiopathic Arthritis [JIA], Systemic Lupus Erythematosus [SLE]) are key factors shaping the course of the disease, psychosocial impacts and disease perception. This study aims to evaluate the relationships between quality of life, disease perception and psychological well-being in these disease groups.

Methods

A total of 83 patients diagnosed with PFAPA, FMF and JIA were assessed at the Paediatric Rheumatology Clinic of the Faculty of Medicine, Kocaeli University. Quality of life (Pediatric Quality of Life Inventory, World Health Organization Quality of Life-BREF), illness perception (Brief Illness Perception Questionnaire) and the children’s psychological state (anxiety [Screen for Child Anxiety Related Emotional Disorders], depression [Children’s Depression Inventory]) were assessed in both children and parents. Only parental assessments were conducted for children under the age of seven. Diagnosis groups were compared using the Kruskal–Wallis test, and relationships were analysed using Spearman’s correlation.

Results

The median age of the 83 children included in the study was 120 months (IQR: 84–192); diagnoses were distributed as PFAPA (22.9%), FMF (39.8%) and JIA (37.3%). PFAPA patients were concentrated in the younger age group, whilst JIA patients were concentrated in the older age group (p<0.001). Quality of life in parents and children did not differ between diagnostic groups (p>0.05). Children’s perception of illness was similar across groups (p=0.720). A weak but statistically significant negative correlation was found between parental perception of the illness and parental quality of life (r = –0.225, p = 0.040). There was a moderate negative correlation between the child’s perception of the illness and the child’s quality of life (r = –0.490, p < 0.001). A significant positive correlation was also observed between children’s and parents’ perceptions of illness (r=0.551, p<0.001). Quality of life showed a negative correlation with depression and all anxiety subscales (p<0.05).

Conclusions

There was no difference in quality of life between children and their parents in three chronic rheumatic diseases with different clinical courses. Parents’ and children’s perceptions of the disease were interrelated, and a worsening of the perception of the disease had a negative impact on quality of life. These findings demonstrate the effect of disease perception on quality of life in chronic rheumatic diseases, regardless of the type of disease. This study demonstrates that children with chronic rheumatic diseases should be assessed not solely on the basis of physical symptoms, but within a biopsychosocial framework; in particular, it highlights that multidisciplinary collaboration between child psychiatrists and rheumatologists plays a critical role in improving both patients’ and parents’ perceptions of the disease, thereby enhancing quality of life.

Funding

The authors declare that this study has received no financial support.

References

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