Attuparambath Sangeeth, Venkataraman Srikumar, Chanu Asem R, Handa Gita, Bagri Narendra
Physical Medicine and Rehabilitation, All India Institute of Medical Sciences, New Delhi, New Delhi, IND.
Pediatrics, All India Institute of Medical Sciences, New Delhi, New Delhi, IND.
Cureus. 2024 Aug 5;16(8):e66178. doi: 10.7759/cureus.66178. eCollection 2024 Aug.
Background Juvenile idiopathic arthritis (JIA) is a common rheumatic disease in children, significantly impacting their functional status and quality of life (QoL), as well as imposing a burden on caregivers. This study aims to assess the functional status of children with JIA, their QoL, and the associated caregiver burden while exploring the correlations between these factors. Methodology A prospective, cross-sectional, observational study was conducted over 18 months. A total of 33 children diagnosed with JIA were evaluated using the Childhood Health Assessment Questionnaire (CHAQ), and Euro Quality of Life-5 Dimension-Youth (EQ-5D-Y). Caregiver burden was assessed using the Family Burden Interview Schedule (FBIS). Data were analyzed using descriptive statistics, regression analysis, and Spearman's rank correlation. Results A total of 33 consecutive children with JIA were prospectively enrolled. The mean age was 10.1 ± 3.7 years, with a male predominance (63.6%, n = 21). Enthesitis-related arthritis was the most common subtype (42%, n = 14). The CHAQ scores indicated moderate disability, with profound impacts on walking and arising. Most children reported "some problems" in all EQ-5D-Y domains, with a mean health status visual analog scale score of 60.97 ± 23.43. The mean FBIS score was 9.64 ± 5.78, indicating a moderate caregiver burden. The majority of caregivers reported moderate financial, family routine, and family leisure disruptions. Significant correlations were found between CHAQ and EQ-5D-Y scores in several domains (p ≤ 0.040), as well as between specific CHAQ domains and FBIS scores (p ≤ 0.037). Conclusions Children with JIA experience significant functional limitations and reduced QoL, which also impacts their caregivers. Early rehabilitation and comprehensive care strategies are crucial for improving functional outcomes and QoL, as well as alleviating caregiver burden.
幼年特发性关节炎(JIA)是儿童常见的风湿性疾病,严重影响其功能状态和生活质量(QoL),同时也给照料者带来负担。本研究旨在评估JIA患儿的功能状态、生活质量以及相关的照料者负担,同时探讨这些因素之间的相关性。
进行了一项为期18个月的前瞻性、横断面观察性研究。使用儿童健康评估问卷(CHAQ)和欧洲五维健康量表-青年版(EQ-5D-Y)对33名诊断为JIA的儿童进行评估。使用家庭负担访谈量表(FBIS)评估照料者负担。采用描述性统计、回归分析和Spearman等级相关分析数据。
前瞻性纳入了33例连续的JIA患儿。平均年龄为10.1±3.7岁,男性占优势(63.6%,n = 21)。附着点炎相关关节炎是最常见的亚型(42%,n = 14)。CHAQ评分表明存在中度残疾,对行走和起床有严重影响。大多数儿童在所有EQ-5D-Y领域都报告有“一些问题”,健康状况视觉模拟量表平均评分为60.97±23.43。FBIS平均评分为9.64±5.78,表明照料者负担为中度。大多数照料者报告在经济、家庭日常事务和家庭休闲方面有中度干扰。在几个领域中,CHAQ与EQ-5D-Y评分之间存在显著相关性(p≤0.040),特定的CHAQ领域与FBIS评分之间也存在显著相关性(p≤0.037)。
JIA患儿存在明显的功能限制和生活质量下降,这也影响了他们的照料者。早期康复和综合护理策略对于改善功能结局和生活质量以及减轻照料者负担至关重要。