Department of Pediatric Rheumatology, Faculty of Medicine, Kocaeli University, Kocaeli, Turkey.
Department of Pediatric Rheumatology, Ümraniye Research and Training Hospital, University of Health Sciences, Istanbul, Turkey.
Lupus. 2024 Nov;33(13):1476-1482. doi: 10.1177/09612033241285622. Epub 2024 Sep 17.
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.
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.
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, = .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, < .001). No correlation was observed between parental QoL and B-IPQ ( => .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.
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.
系统性红斑狼疮（SLE）是一种影响多个器官的慢性自身免疫性疾病，尤其是皮肤、关节和肾脏。管理 SLE 的主要目标是提高患者的生活质量（QoL）。疾病认知会影响慢性病患者的 QoL。我们评估了幼年特发性关节炎（jSLE）患者的疾病认知及其对患者和家长 QoL 的影响。
纳入了 2023 年 1 月至 11 月期间根据 SLICC 2012 标准诊断为 jSLE 的患者。使用简短疾病认知问卷（B-IPQ）评估患者的疾病认知，同时使用 PedsQL 和 WHOQOL-BREF 分别评估患者和家长的 QoL。
该研究纳入了 32 名患者和 32 名家长，以女性为主（78.1%）。最常见的是肌肉骨骼受累（65.6%），其次是黏膜皮肤受累（59.4%）、肾脏和血液学受累（各 50%）。神经精神受累不存在。在患者档案中记录的最后一次门诊就诊时的 SLEDAI-2K 评分中位数为 2（0-18），与 B-IPQ 评分无相关性（r = 0.121， =.51）。B-IPQ 与患者 QoL 呈显著负相关，表明对疾病有负面认知的患者 QoL 更差（r = -0.576， <.001）。家长 QoL 与 B-IPQ 之间无相关性（ =>.05）。值得注意的是，56.3%的患者 QoL 较差，低于 PedsQL 截止值，而 43.8%的家长一般健康 QoL 较差，低于 WHOQOL-BREF 一般健康截止值。
尽管疾病认知与 jSLE 疾病活动度无相关性，但它显著影响了患者的 QoL。增强患者对 jSLE 的认知可能会提高他们的整体 QoL。
