Impact of perception of illness on quality of life in juvenile systemic lupus erythematosus

Objective Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that affects multiple organs, notably the skin, joints, and kidneys. The primary goal in managing SLE is to enhance patients’ quality of life (QoL). Illness perception can influence QoL in patients with chronic disease. We assessed illness perception in juvenile SLE (jSLE) patients and its effect on patient’s and parental QoL. Method Patients diagnosed with jSLE according to the SLICC 2012 criteria between January and November 2023 were included. Patients’ illness perceptions were gaged using the brief illness perception questionnaire (B-IPQ), while patient’s and parental QoL were evaluated using PedsQL and WHOQOL- BREF, respectively. Results The study comprised 32 patients and 32 parents, predominantly female (78.1%). Musculoskeletal involvement was the most common (65.6%), followed by mucocutaneous (59.4%), renal, and hematological involvement (50% each). Neuropsychiatric involvement was absent. The median SLEDAI-2K score at the last outpatient clinic visit, which was documented in the patient’s file was 2 (0–18) and was not correlated with the B-IPQ score (r = 0.121, p = .51). A significant negative correlation was found between B-IPQ and patient QoL, indicating poorer QoL in patients with negative illness perceptions (r = −0.576, p < .001). No correlation was observed between parental QoL and B-IPQ ( p => .05). Of note, 56.3% of patients had poor QoL, scoring below the PedsQL cut-off, while 43.8% of parents had poor QoL for general health, scoring below the WHOQOL-BREF cut-off for general health. Conclusion Although disease perception did not correlate with disease activation in jSLE, it significantly impacted patient QoL. Enhancing patients’ perceptions of jSLE may improve their overall QoL.